*sapphoq healing tbi

Sometimes

2012-02-14T01:52:00.000-05:00

This is one of this month's digital art pics that I made from two of my photos. I named it "The Grid" after thinking about information storage and broken synapses.

Sometimes when I am full of brain fog, I am able to stop what I am doing and take the dog out for a walk in a peaceful place.

Sometimes when I don't know what to do, I take a line from one of my favorite singers and ask myself, "What would Jimmy Buffett do?" If I am having a problem that requires clear thought and decision-making, I ask myself, "What would a logical person do?" And if I don't know what a logical person would do, I call up a logical person and ask them.

Sometimes I force myself to slow down, especially when my wheels are spinning and I am restless.
Sometimes I force myself to speed up, especially when I feel mokus and not wanting to move.

Sometimes blogging helps, sometimes social networking helps, sometimes nothing helps. When nothing helps, I can sit or stand and hurt for awhile.

Sometimes things happen that are too big for me to forgive. Not being a churched person, I don't have to offer forgiveness unless it is asked for. And sometimes I forgive "the part of" the person "that didn't know any better." Apathy or indifference is preferable to resentments these days. Forgiveness is not something that can be rushed. The rush to forgive can lead one into fresh revictimization.

Sometimes I make promises and I don't deliver. Sometimes people and organizations make promises and they don't deliver either. I've learned to make less promises.

Sometimes helping people get stuck in traps. They believe in fictions instead of investigating for themselves. Or they don't really think that we can improve much at all or have a real life. That has to be their problem. My responsibility is to lessen the impact of their false, limiting beliefs on anything that has to do with my life and my wishes and my dreams.

Sometimes people don't want to deal with brain damage or the changes that are wrought in us because of our brain damage. People get scared off by what they don't understand. Friends flee. Potential employers hide behind excuses. Past employers don't want us back. I don't waste energy being good enough for anyone else these days. I have to be good enough for me.

Sometimes people label anger as being "negative" or "bad." I have not found this to be true. The truth is quite different. Muddied anger and rage and resentments can all be liabilities which we allow to dictate our thoughts and behaviors. There is a clear anger that is a call to action. What I have found is this: Anger is my truest friend.

sapphoq healing tbi

Fatigue and Fog

2012-02-11T01:26:00.000-05:00

     I lost a bunch of weight and have kept it off for a year now. With the weight loss, my sleep apnea receded. Unfortunately the fog and fatigue from my fibromyalgia (which I didn't have before the accident that gave me my traumatic brain injury) remains. So although I am no longer sleep-walking through life, I just don't have the energy that I used to. On top of that, I have various aches or trigger points which seem to be diagnostic of the fibro.

     Unlike some unknown to me percentage of folks with fibro who treat it with prescribed drugs, I take no drugs for my fibro. I deal with mine through a combination of exercise and extra rest. There are days when I force myself to get up out of bed. There are days when I suddenly have to take a nap. And there are a few days where nothing much at all gets done.

     The brain fog I combat by the little cognitive games I find on the net-- use your search engine and type in "brain games" if you want to try them-- which are designed for kids but do force me to think in a logical manner. I also do research for a few of my blogs as well as sudoku. From time to time when I get stuck on a problem, I ask myself what a logical person would do. If I cannot come up with any thoughts on that one, I call up a logical person and ask them for ideas.

     One of the things that I have learned throughout my brain injury is that there are times when I have to say "enough." When there are events in life which yield more stress, then I have to cut back someway somehow somewhere so I don't get all twittified. An example is that my list of daily todos has gotten shorter over necessity. Another example is that when I feel burned out, I know that is not the time to volunteer to help other folks. The energy just isn't there. When I take on too much, I pay for it. I hung up my superman cape some years ago. After my brain injury, I kicked it to the curb.

     If I don't take care of myself, then I cannot be of service to others. If I say yes to every little request that comes along, then I get fatigued and brain dead. If I never say no, then my yeses won't mean anything.

     I suppose some folks learn all of this without having had a brain injury. I was a go-getter who kept going long beyond any reasonable person would have gone. Keeping my health as my first priority means I can no longer live the way that I used to.

sapphoq healing tbi

I Got Rhythm

2012-01-24T20:21:00.000-05:00

Both my mother and my father were excellent dancers. They won dance contests together. My mom was a wonderful tap dancer. And Dad was an Arthur Murray Dance Instructor for a few years in his younger days. I was naturally drawn to dancing as a child. I wasn't good at running or kickball or basketball but I could dance.

My preferred dancing shoes are my sneakers. I will dance to any kind of music. Even now after my brain injury, I am quick to pick up new dances and put my own spin on them.

After my brain injury, my balance [not in the technical sense of "inner ear damage," but rather more in the lay-person's sense of being able to walk around without falling into walls and things] was really pretty bad. I fell sideways often. The constant presence of external vertigo-- I am not dizzy, the world around me spins to the left-- did not help much at all. I fell in my home. I fell in the neighborhood. I fell in the park. I fell a lot.

A wonderful anesthesiologist in private practice hooked me up with pool therapy. The pool was indoors and there was a whole lot of folks like me in it. The water had a combination of chlorine and salt in it. There were pool therapists, pool therapist assistants, floats, music, laughter, tropical plants. The water was kept warm as was the temperature in the pool room itself. When I got into that pool, the pain melted away. I was able to do the exercises given to me. I found myself improving. I used to spend up to two hours in the pool. It was a relief during a time when not much was comfortable in my life.

I found a float against the wall that was v-shaped. I asked what was done with it and soon I began to incorporate it into my exercises. I would sit on the float and deliberately induce the vertigo to speed up. I did this by spinning myself back and forth randomly in place on the float. I learned to stick to my seat, not fall off. After pool therapy was done, the neurologist remarked that my balance [in the lay-person's sense of the word I am sure] was much improved. I knew this to be true because I was less bruised from falling. I began to dance again. At first with the cane, but it was definitely dancing.

The other thing that happened immediately after my injury is that I began to insist that my husband not turn off the classical music when he was ready to sleep. He wanted to. I didn't want him to. When he tried to turn it off, I cried. After a few nights, he gave up and the music stayed on all night for the next two years.

Those of you who follow my sapphoq reviews blog may be aware that I love the author Oliver Sachs. His book Musicophilia talks about the connection between music and the brain. [ http://www.oliversacks.com/books/musicophilia/ ]. The University of Western Ontario plans to carry out more research on the connection between music and movement.
[ http://communications.uwo.ca/western_news/stories/2012/January/finding_ties_between_music_the_brain_and_how_we_move.html ].

In some of the t.b.i. support groups and functions that I've attended I've heard much talk of a religious or spiritual nature and how that sort of thing has helped other t.b.i. survivors. Being an atheist and happily unchurched, I cannot add my voice to the chorus. But what I can attest to is that music has been a very active and necessary part of my own recovery.

sapphoq healing t.b.i.

http://communications.uwo.ca/western_news/stories/2012/January/finding_ties_between_music_the_brain_and_how_we_move.html

So Here's the Deal

2012-01-19T22:10:00.001-05:00

Censorship stinks. To the DMCA, SOPA, PIPA and the latest attempts by some politicians who appear to me to be idiotic in this latest attempt to police the internet, no love. You fry my brain. sapphoq

Happy Solstice 2011

2011-12-23T01:07:00.000-05:00

I had a pleasant Solstice. This morning, I went to see my dad who has Lewey Body Dementia and is staying at an assisted living house. (More over at my sapphoq on life blogspot...). We had a pleasant visit and then we both went downstairs to hear a fellow sing Christmas songs. He had an excellent voice, very clear with a good range. On my way home, dog and I walked a mile on a local bike trail.

This afternoon, I took the older shyer kitty to the vet for his annual check-up which he passed with flying colors. After dinner, I played some trivia on-line. I've been continuing to challenge my brain daily. Trivia is one of the newer things I've come up with. Trivia forces me to think, to deliver the correct answer before the other triviacs do. Because I type so fast, I am able to deliver rapid-fire guesses and will sometimes score that way. Other times, my guesses are far off the mark. Occasionally, I actually know an answer and that also feels good.

I continue to take pictures and also work on creating backgrounds and textures on my computer. These are two of the pictures that I took today at a construction site. Making textures gives me much happiness. I've recently started creating photo collages out of pictures that I've taken. When I am taking pictures or working on the computer, I do not feel much physical pain at all. I figure that these activities are like crafts or hobbies for me and must trigger the release of endorphins-- the body's natural pain-killers. Working on textures and some rudimentary 3-D building has also improved my perception somewhat.

What are some of the things you do in order to keep your brain stimulated and challenged?

sapphoq healing tbi

Sometimes

2011-05-15T14:52:00.000-04:00

Sometimes I feel that I hate you. You have interrupted my career, cost me my livelihood, made for numerous fights about money and the lack thereof now that I can no longer work full-time. I am tired.

I am tired of being tired, tired of having to explain why it is that I do not understand this or can no longer do that safely. I am tired of the betrayal. You robbed me. Damn you.

I am no saint. There is never a time when I feel that I love you. But there are times when I know that I notice the little things more-- the touch of a lover, the song of a bird, flowers blooming, weather shifts, the moon. I am alive and that sure beats the alternative.

Sometimes I tell myself and others that my brain's name is now Briella-- still brilliant but a bit twisted and sideways.

Sometimes I mourn the old, sometimes I celebrate the new, sometimes I can just be.

sapphoq healing tbi

Seven Year Itch

2010-11-12T23:09:00.002-05:00

Last week my seven year anniversary of living with a traumatic brain injury passed virtually unnoticed. I was engaged in life. Thus, the post didn't get written until now.

Seven things I've learned in the past seven years:

1. I am in charge of my own rehab. I learned this from the helpful folks in the chatroom at tbi.org. I was in there one night of many nights whining about the lack of rehab in my life. Someone spoke up, told me that I had to be in charge of my own rehab. I listened. Although I didn't stop whining immediately, I did locate brain games and other things on-line that helped me.

2. Anything worth having is worth working for. I continue to progress in major ways to this day because I work at not allowing my traumatic brain injury overrun my life. I am not my labels and I am certainly more than my problems and deficits.

3. In order to be able to challenge myself to progress, I have to get extra rest. A disability advocate at an independent living center taught me this. Very early on, I complained that nothing was automatic anymore. I had to think myself through pretty near everything. The brain needs periods of stimulation and periods of rest in order to heal.

4. Relationships change in the face of an ongoing disability. Some friends wandered away for a time, some forever. Some remained. And I made some new friends.

5. I do not have to second-guess people anymore. I can accept others today as doing the best they can most of the time with what they got. Building a psychological profile of anyone is a meaningless activity. Ultimately, mental masturbation is a waste of time.

6. Cyberbullying is alive and well among adults. Cyberbullying is not limited to any specific age group or occupational status or intelligence level. We can disagree, involve ourselves in heated discussions, and moderate comments without engaging in cyberbullying. Cyberbullying shares many of the same characteristics and effects of bullying in the schoolyard or workplace. It sucks and it's wrong.

7. Life with traumatic brain injury is different but still most definitely life and worth living to the max. It's good to be alive, yo.

sapphoq healing traumatic brain injury

Dear Neighbors

2010-05-18T08:08:00.003-04:00

Dear Neighbors,

The other day I noticed that you were adding another panel to your "privacy screen." Although I do not understand why your driveway needs privacy, it is your property over there and you have a right to do as you please over there in accordance with local laws blah blah blah. There are some grand old pines that have been growing between our driveways long before either of us moved in which provide a wind-block and a living natural privacy screen. But no matter. I digress.

I object to your tying of two garbage saplings to a third in order to avoid having to cull them before putting up the latest panel. I found these two saplings tied up to a third with baling twine yesterday. Yesterday was the perfect day to go shopping for another bird feeder, which I hung up on one of the pine branches in front of the tied up saplings and adjacent to the privacy screen on my side of the property line. Yesterday I refrained from digging up some clone saplings of the aspen in my backyard and replanting them on my side of the privacy screen. I also refrained from decorating in front of the fence with some very large bluebells which persist upon reseeding themselves wherever they damn well please. And I ordered myself not to take cuttings of some poison ivy (which seems to irritate my skin much less than most folks' skin) and tuck them in along your privacy screen. I hid the knives and scissors from my mate who had sudden urges to experiment with how much force would be required to cut through baling twine. The problem, dear neighbors, does not lay in the existence of your privacy screen.

You have a pool. It must be an elegant pool. I do know it is an in-ground pool. That much I can see from one of my porch decks. Some Sunday mornings in the summertime you have jazz and champagne pool gatherings. I actually like the jazz-- although the jazz you favor is not the N'Orlins jazz that I remember from living in Louisiana years ago-- and your drinking is not my intimate concern. Although I am brain damaged, I am not brain dead dear neighbors. I distinctly remember pulling into my driveway with the thing held together by duct tape and chicken wire that pretends to be a car and watching the last of your pool contents drain down my driveway that day in early September. I remember thinking, "How odd." This trespassing by your chlorinated water upon my tarmac must have required some finesse. Your driveway lays closer to the source of the water. Indeed I dare to point out that your driveway slopes downward in a direct route to the sewer. This event was not repeated in subsequent years as I happened to be home during the great laying of the pipeline.

You have lilacs. They hang over my yard and that's okay. How it is that you think it is perfectly alright to enter my yard with your shiny shears in hand without so much as a by-your-leave escapes me. Similarly, my rearranged brain cannot wrap itself around the three men I found one day on my property cutting some of your trees down. "It is customary for a neighbor to advise another of the necessity of entry in order to take care of things like trees," I told the workmen. "It is your employers' responsibility to have spoken with me beforehand. I would not have objected had I had that courtesy extended to me. So now that I know what you are doing, carry on."

That reminds me. You have a garage which sits parallel to a portion of my now fenced in back yard. The property line allows for you to maintain your garage and for me to plant columbines. Trimming your trees and then tossing limbs back there onto my columbines is uncool. I also object to your snide comments rendered within my hearing about my supposed need for lessons on where the property lines exist. (I have the map dear neighbors, and my property consists of a square and an added isosceles triangle). And it is difficult for me to ascertain what it is that you "will not put up with" anymore when you declare this within my hearing but fail to tell me directly about your specific objections. If you approach me and calmly state what actions of me and my mate besides breathing that you find so irritating, perhaps we can stand together like adults and work out a neighborly solution to your woes. Until then, there will be no alleviation of your troubles.

Here are some things which you may not know about me dear neighbors: I don't celebrate Christ Mas and I don't have credit card debt. I don't take out massive loans for home improvement. I save up for home repairs and I pay cash. I like doing it that way. My cash paid for the driveway to be paved, the attic to be redone, the new windows to be installed, the fence. My cash will pay for my new clunker after the current clunker gives up the ghost, the window sills to be scraped and painted, and the new linoleum in my kitchen. I never understood the "keeping up with the Jones-es" compulsion and I refuse to participate in it. I choose to live within my means, not above it. We all make our choices.

Today I have chosen this format to put you on formal notice. Dear neighbors, my actions already bespeak my intentions to enjoy life to the fullest for however long I have left on this earth in my present form. I like feeding the birds and watching their antics from my back deck. I like sitting on said deck while my quiet dog snoozes in a patch of sunlight. I like my wildflower patch. I like my trees, bushes, weeds, flowers, bees, and chipmunks. I even like the little violets that grow in my grass. I like watching families of birds in my nesting boxes and forsythia bushes. I like studying the birds and other natural events from my bench on the back deck. I like hanging out on my back deck. The dog likes having a fenced in back yard. My mate likes resting on the back deck after weeding the tomato patch. The back deck and the smaller deck by my driveway both look like two people with brain damage stained it and I like that too. My dad helped me stain both decks.

My dad has dementia and I love him. My mate is fond of sharp edges and I love him. My dog is in love with life and I love her. I am defensive and irritable and brain damaged and I love myself.

No love,
sapphoq healing t.b.i.

Sometimes

2010-03-22T09:14:00.004-04:00

Sometimes, my brain feels like it is exploding.
I remind myself that my brain has been damaged
and that the nice guy at Sunnyview told me
that my multitasking has shit the bed and it
ain't gonna come back.

Sometimes, my brain feels like it is exploding.
I tell myself that I am doing the best I can
with what I got most of the time. A nap might
help, or going out for a walk with the dog.
I feel so old, like an old lady and I wonder if
that part of things can be healed. I watch
the birds from my window and I envy them
for their freedom and ways of being.

Sometimes, my brain feels like it is exploding.
I remember that risk-taking is risky. And so
I put away the bittersweet memories of
what used to be. I can choose instead
to concentrate on the right now, on the cat
that just now jumped up on the desk to remind me
that I know who I am. Although I did care once,
I am no longer interested in your opinions.

Sometimes, my brain feels like it is exploding.
And I wonder at the heat of the fireworks
heading for the sky and then dissolving
before returning to touch the earth.

sapphoq healing tbi
all rights reserved

Jumping through hoops

2010-03-09T08:59:00.004-05:00

A meeting was held between the job developer and myself. We both showed up with an uninvited guest. I came equipped with an advocate whose primary function is to keep me from exploding in fury and the developer with the VESID counselor in tow who "wanted to see" me.

Many things happened during this meeting. Apparently I had met with the VESID counselor in November and we had spoken about going to school for computer repair. I do remember getting a list of questions in an e-mail regarding this and filing the questions under "totally overwhelming and just not able to get started on researching and answering." These questions allow the VESID folks to distinguish between VESID customers who are able to do the required research in order to get VESID to finance a bit of edumacation from those of us who have brain injuries and aren't able to do the extensive interviewing and looking up stats in order to get VESID to finance a bit of edumacation. [This talk of edumacation may be a moot point as I tried taking an online course in computers and stopped doing any of the related assignments after the second or third week]. At any rate, I thought the last time I had met with the VESID counselor was sometime in the summer. And thus I didn't remember to call the VESID counselor in January "after the holidaze" because I don't remember us meeting in November. I believe the VESID counselor when she said we had met-- I just have no recall of it. If I was able to locate last year's appointment book within the disorganized heaps laying around my home, then I would at least have something in my own handwriting showing that there was such a meeting.

Consequently, when the job developer called me whenever she called me to set up the recent meeting and she told me that my employment plan now says part-time work with animals like in a shelter or something I was willing to accept that. Whenever it last was that the job developer and I had a meeting I believe there was a discussion about that. Over the phone, the job handler allowed as how she would go with me to seek out volunteer work related to animals and that she would go with me to get me into such a place. Please bring the names of three animal places you would like to work at. I did.

Once the VESID counselor came into the room though, things changed. Due to funding, this cannot be. They cannot help me get volunteer work, even as a pre-requisite to seeking employment. They can get me "work tryouts" or assessments cleaning animal cages and whatnot. And wasn't I wanting to go to school for computer repair anyway? That was when I found out that the VESID counselor and I had met in November.

Along with work tryouts there was some talk about:
* a "new" t.b.i. day program,
* and t.b.i. residences,
* and the usefullness to them of having reminder notes [I have tons of lists and charts and notes but the problem is I don't remember to look at them IF I remember where they are],
*and a guy doing t.b.i. in private practice at his home evenings,
* and make an appointment with so-and-so regarding getting people in to help me organize and clean my house that isn't based upon Medicaid funding which I don't have.
I became overloaded within twenty minutes but the meeting lasted for forty five minutes.

I told them-- the VESID counselor and the job developer-- three times that I was overloaded with information. The VESID counselor informed me that she wanted me to ask questions if I didn't understand something. I was at the point where I was catching only isolated words of the conversation between the two of them. After the third time of stating that I was overloaded and adding that I was done and had to go, the meeting was brought to a close.

Once in the parking lot, the advocate commented that she was getting overloaded in there-- and she doesn't even have a brain injury. She also said that these two were not "getting" me as far as she can tell and some other things like that. Their whole focus was to push me into working (even as a "cashier" or someone who puts together uretha catheters-- I can't imagine myself succeeding at either occupation). Meanwhile, a friend of mine who lives in the same town was found a volunteer position by the job handler and a couple acquaintances several counties over were both directed by their job developers to do specific volunteer work at specific places related to their job goals.

At any rate, the job developer is supposed to contact me about the next deal-- work assessments cleaning up after animals-- at some point. For those of you whom VESID or O.V.R. has proven useful, that's cool. This has been years now of non-useful for me. I who used to access services and develop resources for others to utilize have been unsuccessful at utilizing services my own self. Ain't that a kick in the head.

sapphoq healing t.b.i.

This blog has moved

2010-03-09T00:28:00.002-05:00

This blog is now located at http://sapphoqhealingtbi.blogspot.com/ because
google is discontinuing support of ftp publishing.

For feed subscribers, please update your feed subscriptions to
http://tbi.sapphoq.com/atom.xml.

On the Edges of Space and Time

2010-02-23T07:29:00.002-05:00

The outskirts. The borderlands. The hedge. Jumping over the broomstick. The threshold. Betwixt and between. Crossroads. Turning point. Tipping point. Diverging roads. Blasting off. Journeying. Caves. Initiations. All of these places of power.

Yes there is power, a sudden wildness coursing through her veins. The traveler packs her solitary knapsack, slinks it over her back, and is off again. Unlike tripping through the throes of past addiction or neurology in sudden reverse, she chooses this time of leaving. The open road and the train tracks lay before her. The subtle recognition of the unfamiliar. She leaves once again to collect pieces of her soul from places she had never been before.

The bags are not packed. The tickets yet unbought. And yet she can taste it. She Knows that she will be leaving once again. Not where or how yet. The traveling nourishes her spirit.

sapphoq healing t.b.i.

Three Out of Four

2010-02-09T08:27:00.000-05:00

I was on the table-- or more accurately, in the bed-- waiting to be put out so the gut doc could peer inside my colon with her fancy camera. I had been in that place just last week and the same gut doc had yanked a polyp out of my stomach. The blond athletic nurse leaning over me this time with a huge needle she intended to jab into one of my contrary jumpy veins began to talk.

"I don't get why people can't work," she said.
"They stay home and get big and fat and lazy," she said.
"It takes work for me to be in this shape," she said. "I work out six days a week at [a local expensive gym]," she said.
"And some people get handicapped parking permits and I see them springing out of their cars," she said.

"I don't have a handicapped parking permit," I said.

sapphoq healing tbi

Chatter

2010-02-09T07:39:00.001-05:00

I am spent and weary with the requirements of a world which I no longer understand.

*sapphoq in need of healing

Absence and Sorrow

2009-12-28T19:09:00.004-05:00

I've been somewhat absent from my blogs (and from as much of life as I can cancel) for several reasons. My dad has dementia and that has involved my own grief as well as his acute sense that his "mind is failing." Dad who is still driving a car (no thanks to the State of New Jersey for giving him back his license even after I informed them of his deteriorating condition) has been up to see us several times over the past few months.

Additionally the iron-deficient anemia (which I thought I had only had since August but the blood doc tells me I've had for three years) remained unmedicated for a month thanks to the shenanigans of the mail-order pharmacy in cahoots with my medical insurance plan. I could not tolerate over the counter iron. The medical insurance plan required a pre-authorization for the iron script. The mail-order company sent me back the script 28 days after they had received it. Insurance company refused to pay. Pre-auth was turned down I guess but I had not been informed directly by the insurance company. Price of prescription that was turned down: 39.99 for a thirty day supply. I need the iron pills and specifically I need the prescription iron due to things like a severe hiatal hernia and an irritated colon. So I shelled out the two twenties and practiced being glad that I had the money.

Meanwhile though, I suffered through several months of extreme heat sickness and tiredness. The t.b.i. gave me cognitive fatigue and some physical fatigue as well. The C-PAP machine stopped the feeling that I was sleep-walking through life, even though t.b.i. fatigue remains. The anemia finished me off for awhile. I am actually looking forward to visiting the gut doc in January. I feel so un-well that I am looking forward to the kind of testing that comes with visiting the gut doc.

Sometimes I think medical insurance companies run the numbers like a bettor would run the horse races. As long as the horse is winning (doesn't access the medical insurance benefits much) everything is gravy. When the horse begins stumbling a bit (needs medical attention for chronic conditions) the bettor begins to doubt his choices. When the stumbling horse falls down deal-- there is no longer any problem. Business is business. I understand that. But I also understand that human beings are not race horses and that somehow our lives should matter. My insurance company insisting that I should be able to tolerate taking over-the-counter iron for an anemia which I've had for three years flies in the face of a certain reality. So the company gets to save on my iron medicine by refusing to pay for it. A certain amount of denial on their part saves them money. But that same denial forces me, an adult on disability through no fault of my own, to spend extra money on a medical necessity. Thanks pal.

There is some inherent wrongness with insisting that a patient be able to take iron over the counter in spite of conditions that are counter-indicative to that. There is some inherent wrongness with the A.A.R.P. lobbying against any state motor vehicle agency requiring adults of a certain age to submit to driving retesting. And along with that consequently, many insurance companies failing to pay for driver evaluations conducted by a professional upon order of a physician. My dad's insurance-- a combination of Medicare and A.A.R.P. supplemental Medicare-- naturally refused to pay a dime toward his eval (one that he utterly failed I will add). That bill amounted to around 400 bucks.

So to say that I am a bit testy, irritable, and sluggish is accurate but doesn't really cover the whole truth. I've had all I can do to continue to be a participant in life rather than an observer on the sidelines. I am filled with grief. Dad knows he has dementia and he is aware that his brain is on strike. He continues to steadfastly refuse medications for all of his medical conditions as well as the brain scans that would make a definitive diagnosis possible. We do not even have a name for the monster that is beating on his brain. I love my dad and when he dies, I will miss him for the rest of my life. I hope he dies in his sleep peacefully before the real misery sets in. I feel like there should be more or better things to hope for but I haven't found those things yet.

sapphoq healing t.b.i.

On Politics and Swear Words

2009-11-14T20:17:00.002-05:00

After reading Steve Michael's three latest rants and Jeremy Crow's Volume 24 over at the Itching for a Coffee blog, I found that I could not resist adding my own thoughts such as they are. In googling the words "a$$ fu3k," I found that there is indeed an internet cafe by that name which in fact does not have to do with political acts. The suggestion that parents can send their college-age kids to D.C. if they "want to be a$$ fu3ks" struck me as hysterical.

I prefer the word asswipe which is more versatile. It has 41 definitions in the Urban Dictionary. Some of those definitions actually reference the political. A Google search also yields a couple of vids, a site that has funny pictures and games on it, a forum insulting owners of a car, and references to a bad contractor in Toronto.

I myself have no inherent love for politicians as a whole nor of crooked ones specifically. Those of us who have gone to college or sought higher edumacation have to exert some effort if we are to aspire to greatness or even to employment. My dad instilled in me a hefty dose of Protestant work ethic. (In my own patchwork of careers I have certainly suffered from a lack of willingness many times to put to use the values he taught me about work but that is simply and utterly not his fault). As I matured I learned the truth of the saying attributed to Albert Einstein: "Insanity: doing the same thing over and over again and expecting different results." I shortened this axiom to "If I want something different, I have to do something different."

When I found that the journey to excellence, achievement, and promotions in my chosen field involved perseverance and hard work, I had to engage in battling my native laziness and inertia if I wanted to get anywhere. After my motor vehicle accident about six years ago and traumatic brain injury which profoundly altered the course of my life, once again I had to really apply myself in order to learn how to compensate for my neurological difficulties. Whining about how my bosses had better connections didn't help me get promotions. Remaining embittered about my current state of affairs hindered me from being able to make any lasting changes to my life and circumstance. And so, my dad's hard-driving work ethic continues to inform me about what it takes for me to achieve my goals even today when the cognitive fatigue prevents me from being able to work. I can sit and whine about how "everyone else" has it better, has it going on, was able to access the services that I cannot access. Or I can continue to strive to be the best spike I can be and never mind who has it better, has it going on, was able to get more help, or never got disabled in the first place.

The concerns that both of my co-team members over at Itching have expressed in regard to the R-word being hurled at anyone who dares criticizes the President I believe are justified. That anyone should have to qualify any criticism of the person or policies or actions of Obama with, "Hey I am not a racist. I have friends who are black. I don't hate blacks..." informs me that this pressure-- this willingness of some segments of society to judge others as being racist because of political views-- is very much a real presence. And yeah, that some of the world's worst are embracing Obama and congratulating him is downright scary.

I have a traumatic brain injury. I curse fluently. I always have cursed fluently. The thing is, that since my injury, I am more likely to curse openly and publicly at times and places where others would rather I did not. With some difficulty, I am able to hold back on the cursing somewhat so that my message is not lost in the flood of colorful language. I may not agree that cursing or appearance should "matter" to those who are listening to me, reading my stuff, trying to help me with my vocational or medical problems. The reality is that it does matter to the more genteel folks around me. And so I endeavor to inhibit my dis-inhibitions for the sake of getting my voice heard.

In this day and age of renewed interest in "protecting the children" it is almost risky to curse in a blog. As some of us learned on Yahoo 360 (may that stinking corpse rot forever), censorship is not something that is applied equally in all circumstances. Criticizing the corporation became inherently more dangerous than putting a picture of a penis on one's profile was. Crow got kicked from 360. Unfortunately my writing was not talented enough to enjoy that distinction. Perhaps someday. Meanwhile, there is Blogspot. The folks at Google don't seem to be as hung up about these things. Yet, I ask myself how many curse words and which ones will get the blog Itching for a Coffee put on restricted status. I don't want that blog to be forced into "by invitation only" because quite frankly we don't have enough readers to remain a viable outreach if that were to happen. So then do I censor my buddy Steven by asking him to "tone it down" or at the very least "not to say the c-word and to limit the cursing" to some arbitrary number per paragraph? Do I dash a panicked e-mail off to Crow asking him for his input? Or do I just allow the chips to fall where they may? Or something else entirely?

Up through my twenties, I did not engage in a whole lot of intercourse because quite frankly I figured that if I got pregnant before marriage my father would "kill" me. I will point out here that I was mostly self-supporting in my twenties and living away from home. Yes, computers and the internet are all over the place. True no one can watch their under-aged kids "all the time." These two realities do not divorce from parents their responsibility to monitor the activities of their children. Parents, tend to your children. It is a dangerous world. Folks curse on blogs. Predators lay waiting in chat rooms. Kids can be exposed to ideas and values different from your own. My dad never told me "Don't get pregnant before you are married or else." Because his values were conveyed to me, my actions reflected those values even when he wasn't watching. Surely you parents of today are able to deliver clear messages about what is acceptable behavior in your offspring to your offspring. And just maybe, if you do so, your kids as adults won't choose to be asswipes living in D.C. or elsewhere whining about how they got left out of the lucky lottery-- or worse-- running for public office.

sapphoq healing t.b.i.

ReCreation for folks with t.b.i.

2009-10-20T16:23:00.003-04:00

A big shout-out to Sun Valley Adaptive Sports http://www.svasp.org/ of Idaho for providing children, teens, and adults with various disabilities opportunities to learn and participate in activities like rock-climbing, fly-fishing, acting, hiking, rafting, and bowling.

S.V.A.S. also serves people returning from the war with traumatic brain injuries. Participants who may be veterans or on active duty (primarily living in Idaho) are offered week-long camps. The camps are free, and for wounded warriors also free to their spouses. The Associated Press article
http://www.google.com/hostednews/ap/article/ALeqM5jLqA0GapHCQTjMuLRWk_-l1qZGJAD9BDKJD00 titled "Veterans Find Healing on the Water," by Jesse L. Bonner talks a bit about a recent fly fishing camp as well as about one vet who has been gifted with paid singing lessons upon his return home. The article left me wistfully wishing for such an organization here.

On my own wish list of things to do before I die are: para-sailing, hang-gliding, jumping out of an airplane with a parachute, and sleeping on the side of a cliff in one of those cool looking cocoon sleeping bags. I want to do each of those things at least once. (I have nixed bungee jumping on the grounds that I don't find the idea of dangling upside down appealing).

After my injury, I found that some friends were unable to hang with my personality changes, self-centeredness that often accompanies t.b.i., and intensity. Some friends backed away for awhile, some left permanently. A few stuck around through the worst of my recovery. I felt isolated because I was no longer able to work and thus lacked the socialization inherent in the workplace. I was in physical pain and mentally depressed. I was excluded from rehab and day program participation due to personal circumstance-- the insurance companies were fighting over who would pay the bills. I was also tired as h3ll most of the time. I socialized in the needle-sticking neurodoc's waiting room with others who were also in physical pain, at the pool where I was able to get some physical therapy (thanks to Ike Boka, a dedicated anesthesiologist in private practice), and in the rooms of recovery (from active addiction). Via the internet, I met others who also have traumatic brain injuries and I re-learned how to write in understandable sentences. There were the many nights in the brain injury chat room http://www.braininjurychat.org/ spent with others trying to remember the names of the seven dwarfs. And there was the dog. I wasn't able to walk her at first and hired folks to do so. When I did resume our daily walks, she too became part of reconnecting with others.

The internet became central to my rehab (along with vision therapy-- a shout-out to Dr. Fox and Judy). The folks in the brain injury chat room informed that I would have to be in charge of my own cognitive rehab. I found sites that offered games and other things to help my injured brain. I found people on the internet. As I progressed, I began to acquire some blogs for writing in. Through blogging, I met my good friend Jeremy Crow who got me involved in creating backgrounds for e-stationary. I also discovered places where I learned how to write goals. I slowly began to dream again. And I realized a dream of traveling cross country alone.

Today I am still walking the dog. And yes, I still like swimming in cold water in the woods, birding, and traveling about. (My tastes in reading have changed. Pre-trauma I read mostly fiction. Post-trauma I read mostly computer-related books). Aside from the t.b.i. support groups in Albany run by Peter Kahrmann and continued participation in rooms of recovery, I am also engaged in various writing pursuits. And I found the virtual world of Second Life where I practice 3D building in an effort to combat my visual perception problems. I crochet cotton washcloths and occasionally create an original pattern in needlepoint. I don't object to spending time alone. I am comfortable with my own company. I also like spending kick-back time with others who have dogs, are interested in crocheting or needlepoint or drinking coffee, or who also enjoy traveling.

I do feel the lack of a work-related role in my life. Some days I miss being able to work. I am slowly accepting my loss of a career-- acceptance is not the same thing as approval-- and tackling the organization and care of our home. I plan to stay happily married. I hope to be able to publish the novel I am writing someday (and actually get paid for it); to travel throughout the world via trains, planes, and cruise ships; to meet Jimmy Buffett.

sapphoq healing t.b.i.

On Forgiveness

2009-09-22T15:13:00.003-04:00

*This blog entry is dedicated to Holly wherever you may be.*

Forgiveness is not something I extend to others without being asked for it. Nor is it something that I "do" for the sake of my own well-being.

Until I was able to accept the premise of the basic humanity of all human beings on this earth, I was unable to forgive either my self or those people who came seeking my forgiveness. Nor was I able to ask forgiveness of those I had wronged by my actions.

Within my own way of being, forgiveness is conditional upon several things. The biggest thing is that the behavior that causes the injury has to stop. When I go to a human being seeking forgiveness and then repeat the action that I am seeking forgiveness for, I am making a mockery. Inherent to the admission of my wrong-doing is a promise that I will stop doing the wrong thing. Likewise, when someone seeks me out and asks for my forgiveness, my forgiveness is predicated upon the condition that they will quit doing the thing that they are asking forgiveness for.

I also don't do blanket forgiveness. I endorse the direct approach. When I cause injury to another human being, I don't expect to be forgiven without asking. Nor do I forgive others unless I am asked. I am not obligated to forgive anyone who is not seeking my forgiveness. Some people do not want it. In the same vein, I am responsible to seek out those from whom I want forgiveness. My rapist has never sought me out to ask for my forgiveness for his actions. Nor have I sought him out to ask for his forgiveness because I remained actively pissed off at him for a number of years. I don't know where he is today. My sincere hope is that he is rotting in a prison cell somewhere, cut off from his access to women.

The man who rammed my car into a house causing my traumatic brain injury did ask for my forgiveness in court before his sentencing to a year in county. As long as he remains a non-driver, I am willing to forgive the part of him that did not know any better. Once he starts a car and drives off, my forgiveness is instantly terminated. I am not in touch with this man so I have no way of knowing whether or not he made good on his promise to surrender his driver's license. I only hope he has for the sake of drivers everywhere.

My mother has never acknowledged her physical and emotional abuse of me as a child and teen. She may not ever. I am not obligated to forgive her. She continues to play her mind games. In the interest of my own health and well-being, I limit my time and involvement with her. I don't dwell on the past history that my mother and I have between us. (Therapy helped me heal from that). I do protect my self from further harm. On the other hand, my step-father did make his amends. He was in a hospital bed in I.C.U. and he thought he was going to die. He said he was sorry that things were difficult between us when I was younger. I forgave him. He didn't die then, but the forgiveness stuck. Our relationship for the remaining years of his life changed for the better.

And finally, I consider some things to be "too big" to forgive. Those things which fall under that category are extraordinary events such as rape, systemic abuse, and arson. I am not Superwoman. I am no saint. I am an average human being.

To wrap this up, there is one human being that I am no longer in touch with whose forgiveness I seek. Holly from Jersey City, if you happen upon this blog, I am sincerely sorry for getting the other summer day camp kids started on calling you "four-fingered Holly." That was mean. I knew better at the time but I did it anyways. I didn't have the guts to apologize when you bolted off the van that day and I didn't have the guts to stop doing it. I don't know where you are now or what you are doing. I have no way of finding you. Instead I write these words. It is to you that this blog entry is dedicated.

sapphoq healing t.b.i.

Growing Back

2009-09-14T04:58:00.002-04:00

shout outs to Dr. Holub, Peter Kahrman and his Life Growth workshops, and Vitolo Rossini

Once again, last night I found myself explaining in layperson's term basic brain factoids to a friend. She proposed the tired misinformation that "the wires of the brain grow back-- and better than ever." I explained that if there is axon shearing, the axons cannot regenerate. When the axons are not sheared, the dendrites can re-connect but there are some difficulties inherent in the process.

Using my arms to represent the axons and fingers to represent the dendrites, I demonstrated that some of the 'wires' reconnect correctly, some reconnect in the wrong places, and a few grow back but do not reconnect at all. I told her about cognitive slowing-- traveling along dirt roads rather than on the expressways. I also told her that when dendrites do not reconnect, there is the resultant central nervous system tremor (something which I myself do have). Thus, one of the side effects of healing is the presence and worsening of a symptom (the tremor) which some of us did not have before. "Well, I'm optimistic," the friend said. "I'm hopeful."

I am also hopeful. Yet my hope lays in a different direction. I am enough of a realist to know that my own brain damage (the words "brain injury" is a nicer way to describe these profound life-altering changes in brain functioning) will not revert to its' former state of affairs and be good as new. My hope is to be able to deal with what is in an effective loving manner. Of course I keep exercising my brain daily in order to access as much improvement as I can. Yet I also continue to employ workarounds for those times when my damaged brain clamps down on my ability to function.

When well-meaning people say, "Oh but the brain rewires itself," I feel discounted. That is not their intention perhaps, but that is my first reaction. When people say, "Oh but I have [insert troublesome symptom] too," I feel that my own experience with brain damage is being trivialized. There is something within us all perhaps that wishes to normalize the traumatic. It is not a kindness to paint masterpieces of normalcy with the brush strokes of my pain. Because what happened within my brain and within the brains of all survivors of brain injury, is not within the realms of average mundane existence.

I have a fairly clear picture of where my brain damage is and the resultant challenges based on medical testing. I have the results of my M.R.I. in an oversized brown envelope at home. I also have the results of my neuropsych testing done at a brain and spinal cord injury rehabilitation hospital. The M.R.I. films and the final report written by a neuropsych demonstrate in black and white the stark reality of my brain injury.

People in recovery from drug addiction (including the drug alcohol) often claim that they have brain damage in an off-handed way. Years ago, I too had also made this claim in my own ignorance. Indeed, what triggered last night's conversation was a dear friend joking about not having two brain cells left to rub together. I remember what my early recovery from the bondage of addiction was like. When comparing the state of my being then to the state of my being after my motor vehicle accident, I find a vast difference between my former unfounded claims and my present reality. Personally, I would prefer that people in recovery and others quit trying to join our ranks unless they have films and neuropsych reports to back their claims.

Brain damage is a profound alteration in functioning imposed by structural changes. The next time you run into a former co-worker at the mall who did not return to work after her accident and she tells you she has a brain injury now, please endeavor to cast aside your own denial instead of discounting the results of her professional testing. If a survivor of a traumatic brain injury shares his pain over recurring troublesome symptoms, please do not attempt to join our ranks with your claim that you "have that too." And people in recovery, please stop saying that you have damaged your brain unless you have medical evidence to back up your claims.

For myself, I strive to keep addressing my defensiveness and to provide basic brain education where possible in a caring and respectful way. Some of you may know of my involvement with the virtual world of Second Life (registered copyright of Linden Labs). I have a role model there, a young man who is himself a t.b.i. survivor. Vito also uses opportunities as they come up in his daily encounters to educate the masses. I've seen Vito in action. He has far more patience than I do when he encounters brain myths. Vito does not present as being defensive. Vito listens quietly and chooses his words carefully. His ending to every conversation is a bow and the words, "With respect."

sapphoq healing t.b.i.

Unsticking

2009-09-08T11:20:00.003-04:00

"This is the year that I will get un-stuck," I told myself at the beginning of 2009. And I am indeed getting un-stuck. Today I am celebrating 29 years of freedom from active drug addiction. [Yes, I got clean before my traumatic brain injury. Ironically, the man driving the vehicle which had run my car into the side of a house was high on marijuana].

Getting un-stuck for me has been and continues to be a process. I am healing from the pain of losing my career in human services as a direct result of my brain injury, very slowly letting go of my obsession with the decision of the agency that I was working for at the time not to take me back in any capacity, addressing my negativistic thoughts and judgment of others, and de-cluttering with pizazz.

Organization was never a strong suit for me. In the before days-- back when my brain was still a regular brain-- I was not a great housekeeper. Since my brain injury however, my difficulties with organization, sticking to any sort of cleaning schedule or chart, and being able to pare down my possessions accelerated. With gentle encouragement by my true friends, I have begun to be able to do the things that I need to do in order to keep my home livable. I find myself discarding stuff that I no longer need or want to hold on to and that feels good. Real good. I still have to take frequent breaks due to t.b.i.-induced fatigue. Now, after I rest, I get up again. "I am getting un-stuck," I tell myself. "After I clean this or sort though that, I will go to the local diner for coffee." And it is working.

When my dad moved up here for a few months last year, in spite of his dementia he was able to get me to clean. We cleaned for an hour every weekday morning before going out for breakfast. Keeping up with housework became infused with emotions. Once dad left, I lapsed backwards into apathy and disinterest.

At a recent t.b.i. support group, I decided to try to motivate myself with the same thing that worked when my dad was visiting. Clean some, then coffee (or something social). The charts (I can make beautiful charts) of what days to de-clutter and clean which parts of the house didn't work. Similar I suppose to my inability to read a crochet pattern for five years after my t.b.i. I could write down the directions and the steps, I could read (and did) a ton of books and websites (including the flylady stuff) about how to whip the household into shape, I could create my own crochet patterns. But I could not translate planning into doing nor symbols into crocheted cotton washcloths. I can follow a crochet pattern now but progress is halting. It is still easier for me to freelance. In finding a new rhythm, I am a creator and not a follower.

One thing that is easier now is throwing out stuff. I no longer remember much of why I acquired clothing, books, artwork, knick-knacks. The false chains of sentimentality lay no claim on me. Because I do not remember why I am holding on to this or that, I can ask myself if the item is something that I love or need. And so I toss stuff merrily into the waiting garbage bag or donation box. I am not bound to hold on to something for the rest of my life because some relative gave it to me. I know other clutterers, messies, and pack rats have real problems with being able to get rid of things (and I did too in the past) due to sentimentalism. I appreciate being able to breathe. De-cluttering is a joy for me today rather than a torment. I am de-cluttering one corner of one room at a time. Several rooms are now neat and I am maintaining them.

I have also returned to blogging. Writing is my first love. I have dreams-- serious dreams. As with the housework thing, I am finding my way through the twisted and broken neurons in my brain to a new rhythm. I am looking forward to more of this un-sticking process. It is a process, a journey into healing.

sapphoq healing t.b.i.

Taming My Inner Critic

2009-09-03T19:19:00.002-04:00

Recently I decided to address what I have referred to in the past as my critical nature. My Inner Critic-- which is really my own thoughts inside my head-- won't shut up. In order to combat the vast flow of negativistic internal conversations about countless people I have decided that whenever I express to myself such thoughts, I immediately will follow it with something good about the person that I am criticizing. And the "something good" cannot be things like, "The sneakers she is wearing are way cool." The "something good" has to be meaningful rather than superficial.

The good news: It is working and working well.

Those of us who have survived brain injuries [just like anyone else who is actively engaged in a change process] are able to overcome those things inside ourselves that hold us back from being our true selves. This is truly something to celebrate!

sapphoq healing t.b.i.

Kicked to the Curb

2009-07-16T14:43:00.002-04:00

I expected it to happen. Even so it stung when it did. Today at long last I have been notified (per my specific request) that-- in so many words-- Running Sores does not want me back. Budget cuts was the excuse given to the job developer. Sure as shit, Running Sores' website lists several job titles, some of them part-time. No matter. I've been kicked to the curb once again because of my traumatic brain injury which came unbidden into my life five and a half years ago. The real killer is that Running Sores has an outstanding reputation in part due to their innovative acquired brain injury day treatment program.

Business is business, my dad's wise counsel. That is the way of it. I do not have to attach judgment to this one. It is what it is, Nathaniel Branden's wise counsel. I have to deal with things the way they are and not the way I wish them to be.

I had lunch with a good friend the other day. She began talking about BOCES and how her kids would not have made it through school otherwise. The professors are wonderful, she said. I'm pretty good with computers-- troubleshooting, removing nasty viruses and spyware and all of that. I've never actually taken one apart but I know I have untapped mechanical ability. That's what the armed forces test said in high school. And another test recently. I want to take computers apart, blow out the dust, fix the insides, add and subtract and put them back together again.

I have a direction, several directions, several unexplored options. That keeps me from total despair. It takes courage to dream new dreams. It takes guts to be who I am in a world that places more value on business sense than on human beings.

sapphoq healing tbi

VESID and teamwork

2009-07-04T18:16:00.002-04:00

As I had suspected, the fellow who was a co-worker years ago and is now a big-wig at VESID was not interested in making a phone call to Running Sores. At least he bothered to answer my e-mail. It was civil enough. No problem.

The job handler had forwarded to me part of an e-mail from the VESID counselor noting that since "we" [VESID counselor and job handler] are the ones "working with her" [her would be me] ergo any contacts should be made by them. I wrote back to them a reminder that this is my life, my limitations with which I am intimately familiar with because after all I do live with them daily, and that I hope that this thing does not degenerate into non-cooperation with other agencies and individuals. This caused a response from the VESID counselor in terms of a phone call on Wednesday.

The VESID counselor wanted to know what accomodations I will need if I get a carved out part-time job as a per diem investigator of serious incidents with Running Sores. This conversation became immediately difficult for me as it was obvious to me that the VESID counselor does not have a clear handle on what investigating using O.M.R.D.D. regs entails. It was also difficult because I cannot decide what accomodations I will need for a job that I do not have yet and most likely will not get. The fact that the job is carved out, part-time, and per diem is in itself an accomodation. From there we got on to other things. One of the things that I endeavored to explain is that I am not an advocate and not a team player. I am a maverick, an independent worker, a researcher, an investigator. Different set of subskills from advocacy. My past advocacy skills did not survive my brain injury. My investigative skills did. Her immediate response was, "Oh, I believe in teamwork." I said to her that teamwork is fine in terms of me seeking help, however in terms of my work environment I am more of a maverick. I realized that the VESID counselor was not responding to what I was telling her about myself. So I terminated the conversation.

I do not do well with being micro-managed. I am far too independent for that. I don't need help doing job searches. I am accustomed to doing my own. That is not why I require VESID services. The orginal plan proposed by the neuropsych who did my cognitive testing was that Running Sores would re-assign me and that VESID would provide a job coach. VESID (several years ago) was supposed to call Running Sores to advocate for my return. To the best of my knowledge, in spite of my requests, this never happened. I called twice on my own and did not get anywhere with it. I got blown off. If it is not possible to return to Running Sores, then I deserve to know that.
If VESID is unwilling or unable to advocate for me with my former employer, then individuals should stop promising that and say that to me up front.

I went down to the Advocacy and Life Growth workshops again today (we meet every Saturday) and was very glad I went. Peter Kahrmann is a wonderful human being. The group itself is based upon the premise of providing a safe, respectful, honest, and non-judgmental space for us. I like the people in the group. I am also learning how to be less critical in my dealings with others. I value the folks in the group there. Peter has a blog at http://thekahrmannblog.blogspot.com and information about the Life Growth program is located at http://www.lifegrowth.net/index2.html

sapphoq healing t.b.i.

VESID, Kahrmann Workshops, and Hope

2009-06-30T22:25:00.003-04:00

Last Thursday I was supposed to have a meeting with the job developer re: my resume. She called that morning several hours before the meeting was to take place having to cancel. These things happen. We re-scheduled for this past Monday. My husband has a co-worker (also an acquaintance of mine who I have known for a number of years) who helps people who have been out of the workforce for awhile with their resumes. Having seen my resume, he offered his help to me. I accepted. That visit was also slated for this past Monday.

First the job developer's meeting with me. She called for me at 1:23 rather than 1:15, citing a telephone call and forgetting that we had an appointment. [But I'm the Unforgettable One, how could she???]. These things happen. She hadn't rearranged my resume [I had sent her a better one, using a book that husband's co-worker had lent me and one other specifically written to help folks like me who have been out of work for awhile]. Last Thursday she found out that the R.C.I.L. fiscal year ends on June 30 and "all these reports" had to be filed by then. These things happen. Unfortunately, her not being able to re-format my resume deemed this particular meeting a waste of my time. She could have sent me the job leads she had given me. But no matter. I told her that I was also having an appointment later that day with husband's co-worker.
Job developer asked me if I want to meet after July 4th as in next week. I looked at her. I told her, "No." I told her she could send me the job postings via e-mail. (Last week, I set up a box specifically for her and VESID. Sigh. 70+ e-mail addys aren't enough I guess.). I told her I was used to doing my own job searches. Job searching is not where I need help. I told her that VESID was supposed to have followed up with my previous employer Running Sores several years ago but never did. I had called myself twice but did not get anywhere. She agreed to advocate for me. Cool.

I went to my semi (unofficial) appointment with husband's co-worker who is also my long-time acquaintance. He looked at the revised resume and said it scans well, that he wouldn't change a thing. Cool. I lent him my book on resumes. We got into the circumstances behind my leaving the last job-- the car accident during lunch hour, the other driver who was high on marijuana allegedly, the immediate effects of my traumatic brain injury (which included a total inability to do paperwork that someone from personnel kept calling me up about during the period of time when I was sleeping 22 hours a day albeit she didn't know how seriously hurt I was and neither did I), the necessity of hiring a lawyer to protect my rights since the "no-fault" automobile insurance company and the workers comp insurance company both thought the other should pay my medical bills, things I think I may be able to do at my old company on a part-time basis with the assistance of a job coach... Acquaintance suggested several areas of job searching that I had not thought about.

Acquaintance also suggested that the VESID supervisor (who used to be my co-worker years ago) call Running Sores rather than the job developer. Acquaintance said it would be harder to brush off the VESID supervisor, especially under the adverse circumstances of my leaving. I went home and fired off an e-mail. Quite frankly, I do not believe that the VESID supervisor will make any such phone call, not even one to give a heads up that the job developer will be calling. I do not believe he will because: (1). it's not his job, and (2). my unfortunate impression is that the higher up the chain of VESID that one goes, the less actual work gets done. I may be wrong about the second, even if not about the first. It would be nice to believe that I am wrong about the second. It doesn't hurt to ask, even if it results in getting me labeled as "having poor boundaries" or "balls of steel" or whatever the current psychobabble is for directness and bluntness.

At first I thought that polishing my resume was an exercise in futility. Much to my surprise, it wasn't. I've got more than fifty publication credits-- and some of those more than once-- plus an appearance in three anthologies. And a ton of a variety of experience in human services. Surely I should be able to find a part-time job-- maybe 10 hours a week to start-- that I can do even with my current difficulties related to brain damage. My visual processing is messed up, double vision in one eye is no fun, I can't multi-task anymore except for driving, my mild expressive aphasia continues to annoy me even though I have learned to work around it really well, 24-hour vertigo sucks balls, and my back is a wreck. I've got some skills still intact along with the stuff that has been wiped. I've got the computer art that I do, internet skills, research skills, computer troubleshooting skills, and a deep desire to physically take computers apart and rebuild them. I've still got my total attention to detail. Oh, and my memory tested out at the 99th percentile, much to my total and utter amazement.

I have renewed my attendance at Peter Kahrmann's Life Growth/traumatic brain injury support group workshops on Saturdays. The first hour is devoted to working around obstacles that prevent us from being who we wish to be. The second is devoted to talking about brain function and how the damage shows up in our lives. I am now also going to the advocacy instructional workshop before the Life Growth ones. Although I am not counting on any ability to do advocacy work, that workshop has been a refresher in some of the regs I used to know like the back of my hand. And my being there with Peter and other folks gives me hope for my future. It may not be what I was aiming for perhaps. Still, I believe now that I can dream new dreams.

sapphoq healing t.b.i.

Uber-Failth Healing and so forth

2009-06-04T14:34:00.003-04:00

I don't know what the stats say. My own informal observation has been that the majority of folks that I have met who have survived traumatic brain injuries are of the fundamentalist christian religious variety. Or perhaps the most outspoken I do not really know. What I am about to write about may upset some of my readers-- too bad.

When I was younger, one of my (now dead) aunts had multiple sclerosis. In fact, she had it up til her death and died of complications from the m.s. This was in spite of her being a faithful watcher of the faith-healer ( http://www.mcwe.com/ ) Morris Cerullo. Those of you who are unfamiliar with this dude-- you have been spared. I remember Morris Cerullo saying, "Expect a Miracle Today." He even had a booklet out by that name. My aunt had it. She was a faithful contributor as well as faithful fan of this feckless "faith" healer. She had lots of faith. Far more than I did even at my most pious stage of my life. If an yone should have gotten her miracle, it should have been that aunt. But she never did.

Morris Cerullo ( check out http://www.cephas-library.com/evangelists/evangelist_morris_cerullo_fraud.html if you wish to) lives in a freaking mansion which back in the year 2000 was reported to be worth a cool 12 million good ol american dollars. (here's a few more if you wish:
http://www.ofcom.org.uk/static/archive/itc/itc_publications/complaints_reports/advertising_complaints/show_complaint.asp-ad_complaint_id=289.html

http://en.wikipedia.org/wiki/Morris_Cerullo

http://www.charlotteobserver.com/408/story/741812.html )

Okay, now obviously my aunt was a grown woman, competent to decide how to spend her money.
I cannot claim that she or any other folks who give their money up to Morris Cerullo and folks like him are guileless. The problem lies in the truthfulness or deception of the message. Morris Cerullo (who has no doctorate degree on record so he does not deserve the designation of "Dr.")
claims that if people give to his ministry (money) they will in turn receive blessings of wealth and health. There is at least one report of someone dieing after believing that Morris Cerullo's god healed up her epilepsy. No one told her to quit taking the medicine. She believed what she wanted to believe, just like my aunt wanted to believe that Morris Cerullo's god would cure her multiple sclerosis up until the day she died in the hospital of respiratory failure. Morris is not the only preacher walking around these days touting miracles. But I pick on him because my aunt had (by her own competent choice yes) helped support his opulent lifestyle while waiting for her expect-a-miracle-today to show up on her doorstep.

The problem with faith healing as I see it and as Sam Harris sees it is that the god of healing hates amputees ( see: http://whywontgodhealamputees.com/ for his site if you wish and also for some other spirited discussions:
http://www.randi.org/site/index.php/swift-blog/453-science-vs-faith-healing.html
and
http://www.motherinchief.com/2007/05/moving-mountains.html
and
http://www.associatedcontent.com/article/1678103/the_ironic_bankruptcy_of_the_atheistic.html <-- there are four pages to this article and all of it ought to be read).

Or, if the god of healing does not hate amputees, we have no records of amputated limbs growing back during or as a result of revivals, faith healing services of Morris Cerullo (or Benny Hinn or any other conductor of faith-healing services). Yet there are folks who leap out of their wheelchairs (whether or not they remain able to walk afterwards is another question), throw away their crutches, claim that their god has healed them of cancers and diabetes and epilepsy and so forth.

Why is it that we never get to see amputees regrowing their limbs?

The argument is tiring to some believers I am sure. And I am also sure that some believers are sick of being called stupid or other insulting words because of their beliefs. And I am equally sure that some degree of those who fall into the atheist or non-theist end of things are angry and/or sound angry over things that believers have done or have been alleged to have done.

But you see, this whole thing is a stumbling block to me. Find me one amputee that is a true verifiable amputee who now has a regrown functional limb due to faith healing and perhaps I will reconsider.

Til then, I will just figure that supernatural cures due to intercessory prayer just don't happen in this day and age.

And t.b.i., survivors. You can claim that your god healed you if you wish to. And I may even listen to you respectfully. However, I don't believe you. And no, I won't be sending any of my money to those who conduct faith-healing services. You can do so if you wish. You can even pray for me. Meanwhile, I will continue to be in charge of my own rehab.

sapphoq healing tbi

The B1tch is Back

2009-05-15T17:06:00.002-04:00

Yeah, I've been gone for far too long. I've been seduced by Second Life (Fuel Burner referred you, if you ever do decide to sign up). I've spent a ton of time learning how to build in 3D. Considering that I've got double vision in one eye from the brain injury as well as perception problems, being able to build something that actually holds together is a feat within itself. Oh yeah, and one of my relatives got married.

Attendance at that wedding was mandatory. Just before leaving for the very expensive hotel (almost 200 bucks for one night), I had my hair cut. Gave my first braid to the Locks of Love. In case you haven't heard about Locks of Love, basically it is an organization that collects lengths of hair to turn into wigs for kids who have lost their hair due to medical baldness. I decided to grow out my hair once in memory of Marie-- my friend Philly David's sister. She had cancer and she died. She was a Quaker. At the meeting hall, there was a little boy there she admired because he was growing his hair out for Locks of Love. He was confident enough not to care about the other kids teasing him for it. So I grew my hair out in honor of Marie.

I felt really good about it when I saw the braid of hair in the bag destined for a kid who really needs it. I've decided to do it again.

More info can be found at: http://www.locksoflove.org/

Bout a month or so ago, I had a "meeting" with the VESID counselor (my fourth in four years) and the job developer. They decided that I want to be an advocate. Getting into any sort of investigative work does not fit in with their limited ability to see beyond my brain injury. During the meeting, I was asked if I would consider full-time advocacy work if I were to make "twenty-five dollars an hour." I recognized this number as being pulled out of a hat (i.e. not based on reality) immediately. I told both of my professional "helpers" that my health and well-being has to come first. Quite frankly, the fatigue is the real killer for me. Lack of imagination is theirs.

Thanks to the friend who came with me who also has a brain injury, I was able to remain calm. That is to say, I was able to refrain from telling these two to feck off. I am the first to admit that I am somewhat obsessed with the "VESID problem."

I was supposed to send off my resume to the job developer. I haven't. I am currrently suffering from lack of belief that this agency which had put "my case" on hold for a year without informing me of that fact (?cuz I refused to get a "return to work" order from my doctor after a routine vertigo attack?) is able to help me. I waited a year for them. They can wait for me. The truth is less glamorous. It took me awhile to remember that my resume is in the computer files.

The job handler to her credit did call me once, leaving a message. Usually she calls from a blocked number and refuses to leave a message, but she counts it as an attempted contact anyways. When I called her back, she asked if I "still want to do advocacy work." Well, no actually, I thought, that is what yous want me to settle for. No matter, I couldn't talk right then anyways. She asked if I want to meet with her. I said, after I send out the resume I will call you. That is how I left it.

Now that I know where the resume is, I can quit tearing the house apart looking for it. I can print the resume out and send it off. I understand there is something there about allowing the professional helpers to help me. I have not been very co-operative. I acknowledge this fully and completely. Yet I also understand that I have to find my own way. As I am able to let go of the problems I've had with VESID, perhaps hope will then be able to return. Yeah, I do feel hopeless.

I feel hopeless because I want to write and I want to write badly. I've had lots of stuff published. Yet there is no current book in my brain. Just a chapter and a vague idea about where to go with it. And a real sense of loss. As in, "I was finally 'making it' career-wise and everything blew apart in a matter of seconds."

So I will send the job developer a resume. I will even meet with her and make nice. I will even listen to the things she suggests, even if they are not things I can do. The last suggestion involved being a home health aide at the agency that is run out of her agency. The biggest problem with that is my back. I can't lift more than ten pounds, period. One of my friends got pushed into doing that, along with being a nursing assistant substitute on call-- and her back is worse than mine. And quite frankly, there are other problems with that line of work. Like I can't do housework for more than ten minutes at a time. I've forgotten how to cook. And I am beyond disorganization. There is that inability to multi-task too that I've been stuck with. The neuropsych told me that my "ability to multi-task has shit the bed and it's not coming back." The shrink explained that I am highly distractible. Uh wow.

The thing is, I am not an advocate. I am an investigator. I've got total attention to detail (in spite of my disorganization and inability to multi-task). I know how to investigate. It's in my blood. I know how to ask questions. And I know how to write up my findings. I know this about myself. If the job market will not bear with an investigator who functions a bit oddly socially and can only work part-time, then I have to come up with some other way to use my investigative skills.

sapphoq healing tbi

MEET THE NEW YEAR 1/2/09

2009-01-02T11:07:00.002-05:00

same as the old year? I hope not.
This is the year that I will get unstuck.

2008 already seems far away, a distant memory. Like a receding shoreline pounded by the waves or a receding hairline.

2008 was the year that the brilliant VESID personnel demanded a return-to-work order after a routine vertigo "attack." Again, I ask, WHAT WORK? Since I don't wish to beat that particular dead horse anymore, I shall leave that one dangling.

2008 was also the year that my dad moved three times. He moved from his home with his almost ex-wife #3 to a pullman apartment to our home in the middle of nowhere and then back to his home with his almost ex-wife #3.

I learned a lot of things when my dad was living here for a couple months. Some of those
things I didn't wish to learn and some I did.

My dad succeeded where no one else had since my accident-- I learned how to maintain a
simple house-cleaning schedule. Now I wish I could have had him visit after my accident.
Earlier after my accident rather. At any rate, the house is slowly rising from the plague of
the dust bunnies.

The other things I learned are more of a private nature and thus I will not record them here.

2008 was the year that I discovered Second Life (tm to Linden Labs). Second Life is total eye candy to someone like me who loves visual effects and animations. Over there I've been learning a bit of simple scripting and some 3D building. That is the part that makes Second Life different from blogging.

My goals for 2009:
to remain abstinent as defined in the program of Narcotics Anonymous.
to complete my book and submit it.
to remain married and faithful.
to increase our financial stability as a couple and mine as me.
to continue to monitor my health proactively.
to blog on any of the blogger blogs twice a week and on the journal blogs once a week.
to address the things that I allow to keep me stuck.

I hope for everyone a well new year. And if not a well one, then at least a weller one.

sapphoq healing tbi

Falling 12/25/08

2008-12-25T19:46:00.002-05:00

Some weeks ago I fell twice in one week.
My feet went out from under me one Saturday afternoon while walking and I fell flat on my back.
That was painful.

That Tuesday evening I took a hot shower in hopes of relieving the soreness in my back from falling a few days before.
I started feeling a bit odd and I noticed my field of vision getting spotty.
I managed to turn off the shower water and got out of the tub using the safety bar.
I went to grab the towel from the towel rack and at that point passed out.
When I came to, my elbow was shielding my head from the floor; I was on my right side; and my arms and legs-- particularly the left leg-- were shaking.

I managed to drag myself to the toilet bowl where I sat until I was able to walk.
Mate was in bed and had missed the whole thing.
We do keep a phone immediately outside the bathroom door for emergency purposes but all I could think about was the bright lights in the emergency room and not wanting to subject myself to all of that. So I didn't go.

The next day I was informed by the primary care doc that I have shower syncope. Basically that means I can faint in or around hot showers. Whatever.

A couple weeks later and I am still sore and having some rather painful right-sided back spasms. As long as I don't get up, shift positions, shit, or breathe I am okay. Back to the primary care doc's. I am starting physical therapy next week.

Meanwhile I have my tens unit running during awake hours. That helps the misery somewhat.

sapphoq healing t.b.i.

VESID sucks

2008-11-12T13:23:00.001-05:00

It has been several months since I've heard from the last VESID counselor. She called me up on the telephone to remind me that I need, in her words, "a return to work" note from my doctor. I am brain damaged. I am not brain dead.

Let's see. Three years before I got to meet with a job handler. Three months for her to decide that I need such a note because I had told her in the middle of a vertigo attack that "this is getting worse."

What work???

sapphoq healing t.b.i.

Driving, Executive Functions, and Stuff

2008-10-27T19:04:00.002-04:00

Yeah, I've been gone for awhile.
(http://life.sapphoq.com)

Now I am back.

I've been to Peter Kahrmann's workshop/peer support group in Albany where I found out that the part of my brain that caused my multi-tasking to "shit the bed" as the neuropsych at Sunnyview had so eloquently expressed it is my frontal lobe. Frontal lobe damage is the reason why I cannot carry laundry from the back porch to the bedroom and converse at the same time.

I took Dad to a driving evaluation at Sunnyview today. I learned a few things while there. I learned that many of Dad's vision problems (his visual acuity which is commonly expressed by numbers like 20/20 or 20/30 or 20/40 is acceptable) from his dementia are the same vision problems

that some of us with brain injuries struggle with. For those who like meaningless stats, 80% of folks with t.b.i.s have vision problems and 20% of us have auditory problems. 99% of us have memory problems. I don't have the memory or the auditory problems. I do have the vision problems.

During the driving eval at Sunnyview, the evaluator tested for visual acuity, visual scanning, visual discrimination, color discrimination, peripheral vision, impulsivity, and reaction time.

The difference between traumatic brain injury and dementia is that we can expect some improvement in some areas over time. Dementia does not improve. Dementia progresses and worsens over time. Brain damage is brain damage though, in spite of different prognoses. Consequently, some of the things we learn from places like B.I.A.-U.S.A. like "every brain injury is different" is also expressed in Alzheimers' circles as "every dementia looks different."

spike

Two Brain-Damaged People

2008-09-30T12:53:00.002-04:00

Dad has come to live with us. He has some dementia and some aphasia. So now there are two brain-damaged people in the house-- me, and Dad.

Now I know that the official words for my brain damage is "t.b.i." or "traumatic brain injury." The reality is that traumatic brain injury equals brain damage. My brain damage was acquired after the age of 21 in a motor vehicle accident. It is brain damage nonetheless. One physical therapist from Sunnyview Hospital in Schenectady tried to tell me that "brain damage" sounds like one is "damaged" somehow. Yes, my brain is damaged. Why not just call it what it is?

Dad has some restlessness and is wanting to do housework and fix up the house when he is not sleeping in front of the television set. Last week, we decided to stain/waterproof the back deck. First we had to locate the two buckets of stain and the brushes. That wasn't any problem as my friend Ed had given us those things and they were sitting by the back door. Then we had to wait for a sunny day. That happened.

It was a very sunny day. And hot, considering that we live next door to Alaska. So Dad insisted that we wear long-sleeved shirts. The stain getting on our skin would ?eat it? stain it? At any rate, on went the hot shirts. Then there are the latex gloves-- same reason. We started working out of one bucket but then that went to, "Here's another bucket spike. You use your own."

There was lots of staining, doing and redoing. I redid some of Dad's area and he redid some of mine. Two half-gallons were left when we got done. Between us, the stained deck was definitely personalized. There are some drips and dots from my work. And some heavier stained areas from Dad's work. With two brain-damaged people staining a deck, the results will be interesting. A guarantee.

Yesterday, Dad decided that we should put together a clothes rack with vinyl bag hooked onto it for the clothes he has that he no longer wears. This particular clothes rack/vinyl bag thing was manufactured in mainland China. And I swear whoever wrote the instructions hit the "from mandarin to english" button on babelfish. To complicate things further, Dad dumped all of the numbered poles out of their respective bags. The first attempt came out with two longer sides and two shorter sides. There was a break then during which I hoped in futility that Dad would forget about this particular tortorous clothes rack/vinyl bag thing. Didn't happen.

After some "Divorce Court" on teevee, we went back upstairs for a second go 'round. This time we managed to get the vinyl bag installed but then the poles kept pulling out of their holes. And so this clothes rack/vinyl bag thing stands loosely in a corner looking more like a modern art structure than anything remotely functional.

Because of my difficulties with multi-tasking, perhaps I would have had a shot at putting the thing together if left alone in a cave far away from human civilization. No chance of success yesterday. Dad kept up a running commentary as we were working. And between my t.b.i.-related perception problems and Dad's dementia-related perception problems, shoving poles into holes at flush 90 degree angles was not a task destined for fantastic results. Husband said he will "look at it" today.

I think there is something to be said for joining a nudist colony and forgetting about clothes and things like that.

sapphoq healing tbi

The Rigging of Failure 8/23/08

2008-08-23T22:51:00.003-04:00

a big shout-out to the unknown damsel

The stoopid saga of VESID sucks carries on. The job handler/job developer/employment consultant whatever has transferred to a different job herself. The VESID-sucks counselor (my third) is apparently absent from work due to personal/medical whatever. Consequently, I have once again attained the status of limbo without the use of drugs.

As damsel has pointed out in a couple of comments over at Blogaholics, VESID-sucks has as a modus operandi the rigging of failure. Specifically and anecdotally only (based on googling various and sundry terms such as "VESID sucks" and "VESID horror stories" and "VESID complaints") one problem is the mindset to shove us into a job any job without much regard to anything. The other problem is the tendency of VESID helpers to declare many of us as being somehow falling short in the intelligence department and the blatant advice to lower our goals. Of course, if picking up pins with a tweezer and putting them in a container is a measure of anything at all-- the stoopid it burns-- then lots of people should automatically settle for a two year community college degree or a secretarial course or a job in retail or at a supermarket packing groceries. Sigh.

Anecdotally only, a good friend of mine was advised by his O.V.R. testers in another state that college would be an "impossible" goal for him to reach as well. Friend is brilliant. Friend went on to achieve 4.0 in college courses. See, the rub is that if any of our employment situations, college enrollment in courses or a pursuit of study, etcetera is not in line with what VESID sucks (or O.V.R. sucks) assumes is "realistic" based on our putting pins into a container using tweezers, they don't have to support it. In other words, I can be denied job coaching if the lousy little part-time job I have demands that I do something that VESID doesn't think I should do or am capable of doing. And folks who wish to obtain bachelor degrees or more can be denied needed funding by VESID or O.V.R. because the rigors of academia are a far stretch from what their stoopid testing shows that those folks should be able to do.

Could it be funding? The organization that is supposed to provide me with job development and job coaching services is getting paid more than three thousand dollars for one year of their non-services. (Just as soon as I provide a doctor's note indicating that a temporary exacerbation of vertigo into a two-week "attack" is now resolved for the time being and I can "return to work" which I don't have, my non-services can resume. Just as soon as someone figures out that I am on their caseload that is.)

VESID stands to benefit financially by talking people down into two years of college or a secretarial course versus bachelor's level studies and more. And VESID benefits financially by setting their counselors' objectives to get the disabled customers working (at anything) as soon as frickin' possible. To hell with our aspirations. To hell with what we want. To hell with MEANINGFUL employment. No love, VESID sucks, no love.

The three thousand bucks VESID has wasted on my non-employment this past year could have been used to send damsel to her very much wanted and sought after bachelor's degree. Ah, damsel wasn't even eligible for financial aid from VESID sucks and they made her take those stupid tests anyways. Those of us who are not totally broke don't get to have our tuitions paid. Books and twelve cents a mile was the last I heard. At the price of gas these days, twelve cents a mile is a bad joke. Considering that the professional VESID helpers are getting around three times that amount for their mileage, it is an insult.

Another two friends recently found themselves as "trainees" or whatever the fancy word is at a local sheltered workshop. Apparently, those of us who are judged severely disabled do get encouraged to spend at least twenty hours a week at one of those places. It's part of the process of getting the disabled into jobs. The two friends were told that this was now their best chance at gaining supportive employment down the road. Other avenues-- community college courses or a job developer calling them up on Fridays and nagging them-- failed to produce a job of any sort for my two friends. Who exactly refers the VESID failures to sheltered workshops? I still have not found the answer to that question. Neither the VESID sucks counselors nor the job developer have admitted to initiating referral. I asked. I searched the website for clues. No clear information was given. But I digress.

It is LEGAL to pay a disabled "trainee" less than the minimum wage at such places. Way less. The assumption is (based on "timed studies" often conducted with staff volunteers) that a disabled worker cannot possibly be fast enough or good enough to make the minimum wage. The disabled worker in a sheltered workshop is subject usually to piecework, pro-rated of course. If the disabled "trainee" is lucky enough to qualify for training off-site (welding or warehouse loading or potato peeling or newspaper insert stuffing or cleaning), the disabled "trainee" still will not receive minimum wage. Under the law, the workshop is not required to pay it. In effect, the "trainee" is furnishing part of the salary of the on-site rehab counselor (separate from the VESID counselor), part of the salary of the workshop supervisor, part of the salary of the off-site trainer, part of the salaries of all of the staff people who come in contact with the trainee. And of course, part of the profit of the sheltered workshop comes from the trainee's pittance because the workshop is able to low-ball other businesses when it comes to bidding.

Meanwhile, the absence of vertigo attacks is the least of my concerns. I continue to have serious problems which concern me far more than the fact that my world drifts to the left 24/7. As usual, anything worth having is worth working for. And I shall have to force my damaged brain to think of other options to reach my goals and other people who can point out some ways to proceed. There is a word for those people who are willing to help yet aren't professional helpers-- natural supports. All of this leads me to tentatively conclude that VESID sucks must therefore be the unnatural supports.

Oh yeah and VESID sucks: fruck you.

sapphoq healing t.b.i.

p.s. damsel, if you ever want to get in touch with me, my insanejournal blog (user name sapphoq) allows anonymous comments which are screened. Or, you can e-mail sapphoq. sapphoq has an e-mail account at google.

VESID sucks comment

2008-08-23T22:47:00.002-04:00

Somehow I missed it. Over at the Blogaholics Anonymous Gr0up Blog, one of my rants against the organization VESID-sucks garnered a comment which can be seen here
If you wish to read the comment by damsel, you will have to scroll down to almost the end of the page.

In case the link does not work, it is at:
http://the-blogaholics-anonymous.blogspot.com/2008/05/
face-to-ass-with-past.html?showComment=1218955740000#c7960326866138253548

sapphoq healing t.b.i.

A Different Kind of Post 7/31/08

2008-07-31T01:34:00.004-04:00

My two favorite songs with the word "Brain" in the title:

Pink Floyd, Brain Damage http://www.lyricsfreak.com/p/pink+floyd/brain+damage_20108608.html

Ray Bolger, If I Only Had a Brain
http://www.jumbojimbo.com/lyrics.php?songid=2539&type=chords

***

One parody song I found that I like and some lyrics written by kids:

Phil Alexander, Brain Glops Keep Fallin' From My Head
http://www.amiright.com/parody/70s/bjthomas8.shtml

Neuroscience for Kids, Brain Songs (collected)
http://faculty.washington.edu/chudler/songs.html

***

Singers and bands I've heard of although I am unfamiliar with these songs:

Malvina Reynolds, D.D.T. on My Brain
http://www.wku.edu/~smithch/MALVINA/mr029.htm

Green Day, Brain Stew
http://www.musicbabylon.com/artist/Green_Day/
Internation_Superhits/42486-brain_stew-lyrics.htm

Pearl Jam, Brain of J
http://www.twin-music.com/artist_p/pearl_jam_lyrics/brain_of_j_lyrics.html

Justin Timberlake, Still On My Brain
http://www.goldlyrics.com/song_lyrics/justin_timberlake/justified/still_on_my_brain/

System of a Down, Ego Brain
http://www.fruitylyrics.com/song/System%2BOf%2BA%2BDown/Ego%2BBrain/

Bob Marley, Brain Washing
http://www.poemhunter.com/song/brain-washing/

Eminem, Brain Damage
http://www.lyricsbay.com/e/eminem/braindamage.html
http://www.lyricskeeper.com/eminem-lyrics/10579-brain_damage-lyrics.htm

***
Singers, bands, and songs that I don't recognize and probably never heard of:

New Brain Soundtrack, Trouble in His Brain
http://www.nomorelyrics.net/new_brain_soundtrack-lyrics/
225300-trouble_in_his_brain-lyrics.html

Annihilator, Brain Dance
http://www.musicsonglyrics.com/A/annihilatorlyrics/annihilatorbraindancelyrics.htm

Deine Lakaien, Brain Fic
http://www.stlyrics.com/songs/d/deinelakaien12429/brainfic451236.html

Pinky and The Brain, Theem Song
http://www.lyricsmode.com/lyrics/p/pinky_and_the_brain/theem_song.html

Paisley Brain Cell, Paisley Brain Storm
http://www.elyrics.net/read/p/paisley-brain-cells-lyrics/paisley-brainstorm-lyrics.html

Jimi the Jet, Song About My Brain
http://www.completealbumlyrics.com/lyric/50561/
Jimi+the+Jet+-+SONG+ABOUT+MY+BRAIN.html

Gene Vincent, Flea Brain
http://www.songlyrics.com/song-lyrics/Gene_Vincent/
Miscellaneous/FLEA_BRAIN/179014.html

Blood for Blood, Evil in the Brain
http://www.musicsonglyrics.com/B/bloodforbloodlyrics/bloodforbloodevilinthebrainlyrics.htm

sapphoq healing t.b.i. and having fun

On T.B.I., Trolls, and Threats

2008-07-24T00:22:00.004-04:00

The pagan community on the internet is not united by any means. There are various factions and splinter groups. That is an average thing. A bunch of pagans together in one room can certainly fight like liberals and fundamentalists. Or, like frogs and snakes. That is probably average also. No biggie. I've been on the internet long enough to have my own opinions about cyberbullies and even to have acquired my very own cute little chicken trollette. That is no great woop either. I became interested in the study of cyberpsychology as a result of interpersonal conflicts on the web. And as I continued to force my brain to think in my own process of healing t.b.i., I grokked a few things about my own behavior and decisions:

1. I have acted like an ass at times on the interwebs. Oh well.
2. I made my apologies and amends. To the best of my ability, I endeavored to offer no excuses for my poor behavior.
3. I moved on.

I don't begrudge my detractors since I certainly have acted like an ass at times. In one instance, I was playing the part of an undercover reporter and that was the height of stupidity. I was deceptive. I was dishonest. People from various sides of that particular dispute were pissed at me for good reason.

In that particular scenario, I took responsibility for what I had done and endured the fallout. I learned from it. And I have to thank my good friend Jer for helping me think about the situation with clarity. Folks displayed various levels of acceptance as is their right. There are still snarks thrown in my general direction from time to time. To that I say, "Whatever." If I am going to champion freedom of electronic expression, I have to be willing to risk running into some expression that I don't approve of. Oh well. I don't have to engage in mental masturbation today. I know how to use the back button. I can put on my big girl panties and move on.

Unlike a few pathological relatives of my childhood who did their best to infest my being with the soul-sickness of not-good-enough, I do not intend to live out the rest of my life apologizing for my own stupidity of a year or two ago. I don't trouble myself with the notion that I am somehow not good enough for or less than any particular person or group of people. It is rather meaningless to me. I have moved on. I am writing about this today because I am making some connections within my own self about my own self.

* * *

Lest any of you misunderstand, the assumptions about me and the snarks do not fall under the category of cyber-bullying. People can fight, disagree, blow up at each other, call each other names, and all sorts of other stuff without that falling under pretend labels and pretend diagnoses. People do not always understand or approve of my choices. I don't have to explain a damn thing to anyone. I am free to associate with the people that I choose to associate with. I am free to go where I go and to do what I do as long as I don't impinge upon the rights of others. Others are free to do the same. Not everyone wishes me well and I don't give a damn about that anyway. The stuff of conflict is not automatically classified as cyberbullying.

The encyclopedia at P.C. magazine defines a cyberbully as "A person who uses the Internet to harass or intimidate someone else." Someone who calls me a troll or stupid or insane or a toxic fluffbunny or a fucktard is expressing an opinion. Their opinion may or may not have some validity. I am free to engage them in some ritualized name-calling or to respond or not respond in any legal way that I choose to.

The folks at tech target add the word "threatening" to the definition of a cyberbully. Sameer at the Cyberbullying Blog points out that the behavior is repetitive. There is a pattern. It is more than one occurrence. Someone e-mailed three requests to me to close her e-mail box on one of my domains. I have an off-line life. I hadn't checked my e-mail box there in a while so I only got the messages yesterday.

The first e-mail (dated June 29) states that there will be mythological salt pits in my future if I contact the young woman again. The second (dated July1) makes an unflattering inference about either my size or some quality of mine. She asks me in the second e-mail to delete her and in the third (dated July 2) to remove her. I know she meant for me to close her e-mail box but the choice of words was amusing to me. I did as requested. I have no intention of contacting her again. As long as the young woman does not continue to threaten me with mythological salt pits in my future or other stuff, we are both free to carry on in the absence of the well-wishes of the other.

The above example falls short on the repeated part of threat inherent in the definitions of cyberbullying. Here are some things that do qualify as cyberbullying:
cyberstalking,
maintaining a website that is designed to harass someone or threaten them,
posts on a website or forum or journal or blog that tell someone to watch out because the poster or friends of the poster may show up at any time,
making up lies about someone and publishing them on the web (e.g. the teen who killed herself on account of some stuff that was posted about her on MySpace and the teen who killed himself after being harassed on Bebo more recently),
texting someone for the purpose of intimidation,
making repeated fun of someone with social difficulties brought on by Asperger's on internet forums,
provoking someone in an e-group into rages and then mocking the rages,
sending someone tons of spam or bogus e-mails,
repeated racial slurs used in a chatroom against another participant.

The thing about traumatic brain injury, as well as many other disabilities, is that we are more vulnerable whether we want to acknowledge that or not. We may be more vulnerable to cyberbullying because of errors in our judgment. We may be too quick to trust others on-line, too eager to expose personal information, too fast to offer up our struggles. We can participate in flame wars without understanding what we are getting into. We can become too casual about what we publish on our websites or blogs. We may wind up communicating via instant messenger with folks who do not wish us well. (In the early days after my brain injury, a woman began to call me every day. Mate was baffled by the sudden appearance of a new close friend in my life and did not understand the almost daily lengthy phone conversations. I didn't remember who this woman was or where I knew her from. Eventually, I discovered that the woman was the daughter-in-law of a friend who just liked to talk to people on the phone).

Below are a few websites referenced in this post and a bunch that aren't. I recommend the "Are you a cyberbully? Quiz," the cyberethics site for those who like academic stuff, the Donna Williams poem, and the "Shrink the Cyberbully Game" by virtue of their being different than the usual offerings.

The other stuff may help you decide what to do if you are being cyberbullied. Inclusion of the links do not imply the endorsement of any of the websites endorsing this post nor does it imply that I totally agree with every freaking thing said.

sapphoq healing t.b.i.

http://www.pcmag.com/encyclopedia_term/0,2542,t=cyberbully&i=40624,00.asp
Definition.

http://whatis.techtarget.com/definition/0,,sid9_gci1023061,00.html
Definition.

http://www.cyberbullying.ca/examples.html
Examples of cyberbullying.

http://www.cyberbullying.ca/info.html
Suggestions on handling cyberbullying.

http://cyberbullying.us/blog/?cat=13
A blog noting laws being passed in the United States.

http://www.wrcbtv.com/Global/story.asp?S=8706000
Suggestions for parents.

http://groups.msn.com/stayingsafeonline/cyberbullies.msnw
Acknowledges that cyberbullying happens to adults too. Some simple advice.

http://deathby1000papercuts.com/2007/12/cyber-bully-quiz-are-you-a-cyber-bully-3/
Are you a cyberbully? Quiz.

http://www.bullyonline.org/workbully/attent.htm
Attention seekers from Bully-Online.

http://www-usr.rider.edu/~suler/psycyber/psycyber.html
Cyberculture-- pretty cool stuff here.

http://cyberethics.cbi.msstate.edu/mason2/
Privacy from a cyber-business perspective.

http://cyberethics.cbi.msstate.edu/
Various links about cyberethics.

http://smg.media.mit.edu/people/Judith/Identity/IdentityDeception.html
Identities, trolls, etc on usenet groups.

http://www.copyscape.com/
Search for copies of your pages on the web.

http://adequacy.org/
Archives of a site where trolls gathered proudly.

http://www.urban75.com/Mag/troll.html
Writing: an excellent troll how to.

https://groups.google.com/group/alt.troll/msg/bc2e71e19c590d8e?ie=UTF-8&oe=UTF-8&as_umsgid=36a7593e.22750214@ruble.net&lr=&hl=en-us
Usenet trolls.

http://www.straightdope.com/mailbag/mtroll.html
Definition.

http://www.jfo.org.uk/info/new/troll.htm
Classification.

http://forums.station.sony.com/mxo/posts/list.m?topic_id=12200012985
More extensive classifications of trolls.

http://www.reuters.com/article/wtMostRead/idUSN0343424320070705
Griefers. [They are on Second Life also].

http://redwing.hutman.net/~mreed/
Classifications of flame warriors *the pictures are priceless.

http://blog.donnawilliams.net/2008/01/21/cyber-bully/
Poem by Donna Williams.

http://curezone.com/forums/troll.asp
Trolls on the Curezone forums [original aol article not on aol anymore.]

http://rkcsi.indiana.edu/archive/CSI/WP/WP02-03B.html
Study on trolls in a feminist forum.

http://www.emoderators.com/papers/flames.html
Flaming, 1992.

http://www.searchlores.org/trolls.htm
More on usenet trolls, attacking in waves, use of the word "sockpuppets" to mean one person
posting to a board under different names in order to agree with themselves!

http://www.theregister.co.uk/2007/10/04/bot_herder_profile/
smurfs and bots

http://www.mcgruff.org/Games/cyberbully.php
shrink the cyberbully game

Kristen Furseth-Mullaney's triumph

2008-07-07T22:01:00.003-04:00

http://www.freep.com/apps/pbcs.dll/article?AID=/20080706/SPORTS17/807060590/1065

A big shout-out to Kristen Furseth-Mullaney who is vying for a spot at the Olympics as a racewalker for the United States. She hails from Okemos, Michigan. Furseth-Mullaney suffered a traumatic brain injury in 2006 when she was hit by a car while biking in the Caribbean. After having to relearn how to walk, she began her athletic comeback in the water and gradually was able to swim laps. She wanted to run but the docs nixed that idea. They did allow her to try race-walking and so she did. The mother of two has left frontal lobe damage but that did not stop her from setting goals and achieving them. The most recent m.r.i. shows the possibility of a brain tumor and she is also now diagnosed with adrenal insufficiency. My baseball cap off to a woman who did not let traumatic brain injury stop her from pursuing a dream.

sapphoq healing t.b.i.

VESID sucks

2008-06-19T17:36:00.002-04:00

A couple of days ago, I actually heard from the VESID rehab counselor instead of from the job developer. The VESID lady wanted to know about my doc's appointment at the end of May. Well no, you see that is yet one more thing that the job developer had gotten wrong. I had told her that the appointment was in June or July, NOT May. May had not been mentioned in the context of a doc's appointment at all. No surprises there. I detest incompetence.

The VESID lady still wants her stupid fruckin' doc "return to work" note. That in itself is a joke. What work? It took several years for me to even meet with a job developer. I finally did and said job developer panicked over a routine (for me) vertigo attack, resulting in the latest stalemate. I been to the CAP agency before. Quite frankly, I don't have the energy for all of this burrsit. And furthermore, VESID sucks.

I cannot point to one "professional" who bothered to find out who I am, or even who bothered to read through all of the medical records. Not one. The percentage of folks who get off of disability is extremely low. Participation in VESID (O.V.R. or B.V.R. in other places) knocks that percentage up a bit. Problem: the professionals' definition of meaningful employment is way different from our definition. VESID is noted as per anecdotal stories available on the web (google "VESID problems," "VESID horror stories," or "VESID sucks" if you wish to read any of them, for an "any job" sort of attitude. That "any job" attitude translates into low-paying down to minimum wage regardless of experience and abilities. Just get us all employed.

The problem is that if we have to go back out on disability at some future date, the S.S.D. folks get to add in the effects of the shit jobs to our benefit checks at that future date. It is no wonder that many of us choose part-time work, especially at first to try to gauge our ability to return to the workforce full-time. And for those of us who are no longer able to do what we used to do (or who are not hire-able into a field which we had years and years of experience due to whatever the hell the last ex-employer is telling folks about us: le sigh), it does not make sense to practically kill ourselves working in a minimum wage job. Sorry, that is the way it is. So if I take a job for subsistent wages and lose the disability after nine months, I screw myself for when I need to be on disability again later on.

Putting up with VESID's shit has been rather taxing for me. Doing more of what doesn't work doesn't work, as Nathaniel Branden says. Trouble is, I can't seem to find what does work. Mate brings home job postings that I am not qualified for and/or not able to perform due to limitations donated to me courtesy of my traumatic brain injury. There are times when having a traumatic brain injury sucks big-time.

*discouraged sapphoq still healing traumatic brain injury giving up on VESID but never on herself.

A Shout-Out to Matt Evans of Kalamazoo

2008-06-13T21:11:00.002-04:00

At the age of eight, Matt Evans was hiking in Colorado and he fell off a cliff. He fractured a skull. His brain injury left him with slowed cognitive processing. On top of that, he had a stroke which left him with some paralysis in an arm, difficulty walking and speaking, and the need for several surgeries on both his right arm and leg. In spite of his difficulties, Matt Evans continued to play golf-- albeit one-handedly-- and it is reported that he indulges in a game of pick-up basketball here and there. He graduated with a 3.5 cum and he hopes to pursue further studies and a career in elementary education.

Matt Evans, I salute you for persevering in spite of your disability and I wish you the best in life.

sapphoq healing traumatic brain injury

http://blog.mlive.com/grpress/2008/06/kalamazoo_central_grad_overcom.html

I Am What I Am-- no, not Popeye the Sailor Man

2008-06-08T22:30:00.003-04:00

This weekend left me hot as hell and thinking about getting a summer shack up in the Aleutian Islands. The dog would love it up there of that I am sure. However, we are where we are and where we happened to be this weekend was humid as all get out. It was the kind of weather that rose off the sidewalks in a deep haze. One time way back when I was working in a nursing home, I had left some old lady's shoes on the radiator. Big mistake. The soles were melting by time someone else rescued them. It wasn't hot enough here to fry an egg perhaps, but it was probably hot enough to melt the rubber soles off of shoes left on some black tarry street. The kids down the block had gotten one of them pint-sized electric cars and they were cruising over their front lawn. I laughed to see their yellow lab slowly lopping after it, reaching out once every so often to bite the tires.

Yesterday I went to a speaker jam. Those that know me well know that I have been in recovery for a very long time-- in fact more than half my life. Yes I still attend meetings of several twelve step groups on a regular basis. I have been accused of all kinds of crimes related to being anti-12 step groups on the internet because I am a sometimes critic of ways and means and probably because I am a Witch/Atheist/currently a Discordian. (If you don't know what Discordianism is, please google it if you care). Or maybe because I am sometimes a jerk. Whatever. In the blogging world as in real life, that is the risk that one takes when expressing oneself: That sooner or later somebody is going to take exception to one's opinions. Oh well. The price of freedom of speech is one that I am willing to pay.

At any rate, I didn't get to the speaker jam at the beginning but that was alright. I am not a morning person, that is fer sure. So I missed the first two speakers out of ten; and the last one. I was there for seven speakers of varying abilities and stories. One thing became immediately clear to me-- from the women speakers as well as from the men speakers-- and that one thing is that a vast majority of those who spoke yesterday have sex on their minds. I learned quite a bit yesterday. Sex problems don't magically disappear when one gets into recovery. I just wasn't expecting them to be so prevalent in what I heard yesterday. A secondary theme was gambling problems in recovery. I was especially appreciative of that since the last couple of months I have wanted to get high and to gamble. The odd thing about wanting to gamble for me is that gambling was never my thing. It didn't do much for me, I only remember getting one gambling "rush" and that was in a small group of folks from Running Sores who were at the race track. I'd been forced to go to that racetrack under the guise of a manager appreciation party when people were still able to force me to be social in a large group but that is a whole other tale. And not a terribly interesting one at that.

About midway through the afternoon, I noticed that someone (who still works at Running Sores) had entered the room and was sitting not far away from me. She was doing a fairly good imitation of being blind to my presence. That was a pretense that I was content to let be. I really didn't care one way or the other. Or at least I had decided not to care for the moment. A bit later as I got up to leave (before speaker number ten and the clean time countdown), the Running Sores woman had moved and I walked right past her to go outside and to my car. Again, she turned away from me. Several thoughts vied for my attention. One of them was along the lines of, "What the hell. Am I a leper? Is brain damage catching?" Some of the other ones were more sane, or at least more of a rationalizing nature. "I didn't want to talk to you either." "Whatever." And there was the ultra-adult thought which ran, "Hey it's been about four and a half years now. Isn't it time to get over this mental masturbation about Running Sores and how 'cruelly' I was treated? Get on with life already."

The thing is, healing doesn't necessarily happen upon demand. Or there would be bunches of people demanding healing, maybe even curing, and getting it. Emotional healing is not much different from the physical in that regard in my opinion. From past experience after a devastating house fire, I know I have to call each thing/person by name and say what they meant to me before I will be able to let go in a real way. So there is more work to do on that score. It's okay though because I have a way to address it and a support network to help me get through it.

I am most fortunate because my support network is not limited to people in recovery. Like the inane commercial for a credit card with frills says, "I got people." This whole life thing, being a citizen of the universe and all of that, is not a simple matter of us versus them. It is not you and me against the world or people in recovery fighting with the aliens (those without a 12 step program, whether they need to be in some form of recovery or not). Nor is it any faction of the gay/lesbian/bisexual/transsexual/transgendered/intersexed/queer communities against the straights, atheists fighting the Christians or other religious groups, disabled against everyone else. Nor even those of us with atypical neurology slugging it out with the neurotypicals.

I sometimes have to remind myself of these things rather forcefully. I have to remind myself that business is business, period. That although I believe that ninety eight percent of those working in the human services field deserve to be eaten by Baba Yaga, really life cannot be reduced to black and white. Consequently, the woman from Running Sores who was at the same speaker jam that I was at yesterday had the same right to be there that I had. And I had the same right to be there that she had.

The last time I saw her was early on after my accident at the local mall. She had gotten my old job but spared no sympathy for her old boss. Hey, I lived anyway. I could obsess over the lack of support from the folks at Running Sores or I could dwell on the support that I was getting elsewhere. Traumatic brain injury has made obsessions the easier softer way and so in truth, for several years I did ruminate excessively over the idea that I did not get a get well card from the folks at Running Sores. [A friend finally sent me a Get Well card, hoping that would help. It did]. What I got from Running Sores was a form from the safety committee which asked, "How could this accident have been prevented?" I wrote down "Shoot all of the pot smokers who drive." [The man who had hit my car was high]. The lawyer was keeping close tabs on my altered states at that time so he was able to convince me to send all forms to him. Whenever I was asked about some form or other, I learned to say, "The lawyer has it. I can't understand it." That much was true. Filling out any kind of form during the first two years post-accident took about an hour and a half and resulted in colossal headaches. And my "answers" were not coherent. The lawyer put all the forms in the round file and had some assistant or other fill them out only when forced to. That is how lawyers do things.

In truth, although my nemesis was ignoring me at the speaker jam, I really didn't have much to say to her either. What could I have said? Hello, how is work? Lame. Good to see you. It wasn't. You are looking well. Like I care. By the way, yes indeed it is a traumatic brain injury just like I had told you at the mall and I am on disability and I hate VESID sucks. She isn't required to care about any of that in even the most superficial way. Just as I am not required to care about her life either.

Traumatic brain injury is a polite word for brain damage. I am brain-damaged. My life got derailed through no fault of my own (for once) four and a half years ago. And yet. The world didn't stop because my world shattered. Since the accident, I've had to deal with lots of stuff. I am not dead. I am very much alive, still breathing. Breathing is a definite plus. I can let the shoes stay on the radiator, their soles melting down into the heat. Or I can take the shoes off of the radiator, open the window to let the stench of burning rubber out, and get on with living the best way I know how.

The metaphor with the shoes bothers me. Like many metaphors that I hear in the rooms of recovery, there is no allowance for more than two ways. Either we are going forwards or we are going backwards. We are progressing in our recovery or we are headed for a fall. We are on g-d's side or we aren't. We are part of the problem or we are part of the solution. I have problems with the whole good-evil dichotomy. For quite awhile now, I've suspected it is just a neat over-simplistic way of saying good g-d-fearing folks to the right and the rest of the infidels to the left. Those of you who know the significance of the numbers 23 and 5 will understand.

The other thing that bothers me is the blending. The whole "all religions are different ways of going up the same mountain." Or "all religions are just different ways of knowing the same g-d." Or, even worse, "all religions kind of meld together." Uh, no they don't. All of the religions of the world cannot even agree on the basics. Christians say Jesus is the Son of g-d. Muslims declare that Allah didn't have a son of any sort. Jews say the Messiah didn't come yet. The Hindus and the Muslims have been fighting each other in India for years and years. Several Muslim factions are also at war. The Koran has produced believers who take on the admonishment to "Kill the infidels" quite literally. Other believers found their ways around that. The Bible has been used to justify slavery, separation of the races, oppression of women and the disabled and those of us who are not straight. And there are believers who find their way around those verses as well. The Buddhists are actually atheistic in their own right with a twist. I think I will read some more of that Richard Dawkins book along with some of the others ones laying around here. (More book reviews coming up by next week at http://sapphoqreviews.blogspot.com). All religions and cultures and peoples are not equally good nor do they all hold equal value to the survival of the humans and other stuff. Call me politically incorrect. I consider that to be a compliment.

I think about the stuff we have lost and the stuff we are losing to political correctness. Like the pot smokers who drive, lets go shoot all of the comedians. Follow that up with the hanging of bloggers and mediacs, gassing of politicians and educators. Oh, but not just the liberals who in my mind are responsible for things like the renaming of the Sambo's restaurants. Let's rid the world of the conservatives too who don't agree with the libs. Let the dems and the pubs drown together as they debate things like a New York State Law that officially makes it illegal to sell a cow which has tuberculosis. If we get rid of everyone who doesn't agree with everyone else, there would be no one left. I have gone off on another flight of fancy. Drat this brain damage.

Drat the Brain Injury Association of the United States of America which had green rubberized bracelets made up. I don't know how or why someone decided that green is the color of brain injury. Myself, I would have opted for a gray/black combination. I would not wear the bracelet when it first came out nor will I now. The bracelet says, "Mind Matters." Screw that. Scientists cannot agree on whether the mind exists at all. Oh it may and it may or may not be part of or the same as the brain or separate from the brain. Or the mind might me a figment of the imagination. No one asked me my opinion when it was time to decide what color to use or what slogan to put on the stupid rubber bracelet. My slogan, "BRAINS matter." My brain matters. The same political correctness that causes "traumatic brain injury" to be preferable to the words "brain damage," is that the reason behind picking the non-specific "mind" over the very specific "brain?"

English does not have a verb to distinguish a temporary state of being from the essence of being. In Spanish, a language whose beauty captivates me, there are two verbs that translate into the English "to be." There is ser-- a state of being which is not intrinsic to the organism. And there is estar which describes the essence of being. Thus, when I straightforwardly say at to a group of people in recovery that I was a failure at teaching I have no way of indicating that I am not claiming that failure permeates and defines me. Along comes the rationalizations. Someone's g-d didn't want them to be a famous fill-in-the-prestigious-career-of-choice. Someone else informs a small group of folks within my earshot that her definition of failure is different than mine. I can't help but wonder if this unwillingness to admit that because some of us failed at some undertakings that means that we were failures at those undertakings is a leftover from the rah-rah cheerleader self-esteem school of thought. Objectivism certainly has its' foes these days from schoolrooms to boardrooms. I owe a debt to objectivism. Objectivism actually helped me to separate my rationalizations from reality. I learned that yes indeed we are not born equal in terms of ability. I learned through objectivism to take responsibility for my actions, to examine how I contributed to my failures. I cannot push my failure at teaching in the classroom off on some higher power or even on some lower power. It was my own internal inability to ask for help that caused my downfall. So yes I failed at teaching. I was a failure as a teacher in the classroom. Those of you who protest that have never seen me with a group of children as I struggled with the expectation that I keep some sort of order and impose some discipline. I was a failure at teaching-- ser. I am not the totality of failure-- estar.

Even when my brain damage a.k.a. traumatic brain injury has made communication difficult, I know that for example the failure of VESID sucks to adequately serve me is also partially my failure as well. The folks at Running Sores were conducting business as usual after my accident, probably in accordance with legal advice. Brain injuries are expensive. Their insurance company didn't want to get stuck with my medical bills just as my automobile insurance company didn't want to get stuck with my medical bills. Business is business. I don't have to personalize any of it. I didn't understand that back in the early days after my accident when I was sleeping for twenty hours a day. I can understand it now. I am not who I used to be. Even my taste in reading material has changed. I am not who I was going to be-- would have been today if the accident hadn't happened. I am certainly not better off. Spare me.

I am who I am. And regardless of the attitudes and actions of people and agencies around me, I know that I am going to keep striving.

sapphoq healing t.b.i.

Stuff that annoys me, stuff I am happy about

2008-05-28T02:45:00.003-04:00

A list in no particular order inspired by a blogger who wrote a list of how to annoy an aspie. Unfortunately, I can't find the link to that particular post at the moment. When/if I do, I will add it.

If you have a brain injury and not all of the stuff on my list annoys you, that is okay.
Write your own wish if you want to.

If you don't have a brain injury and not all of the stuff/most of the stuff on my list annoys you, that is probably okay. Write your own. I don't have the monopoly on being annoyed and some of the stuff mentioned here is not specific to folks with disabilities.

So here goes:

1. "Oh yeah, I have that too." Unless you also have atypical neurology, NO YOU DON'T.

2. Repetitive forms.

3. Too loud, too bright, too scratchy.

4. The world requires multi-tasking for almost everything. My ability to multi-task has shit the bed and ain't coming back.

5. Cognitive art therapists who claim to have degrees from "schools" which are suspected of being diploma mills and reported as such when Googled.

6. Anyone who insists that said cognitive art therapists are loved by gazillions of fans. That whole being loved thing is the emotional stance of infants.

7. Medical doctors who do not listen.

8. Expressive aphasia sucks.

9. "You are a person WITH a traumatic brain injury." No asshole, I have a t.b.i.

10. Referring to t.b.i.-ers or survivors of t.b.i. as t.b.i.s. Uh, hello. We are not our labels. We are not alcoholism, broken legs, or brain injuries. [See number nine.]

11. VESID. VESID sucks. [VESID is called o.v.r. in other states.] And by the way any vocational rehabilitation counselors who may have stumbled across this post, disabled people do NOT spend all of their time home watching television. Even people with developmental disabilities do NOT spend all of their free time home watching television. Your sheltered workshops are a modern form of slave labor and an abomination.

12. Being talked down to by professional "helpers" who don't help.

13. Dealing with the mail order pharmacy.

14. Fatigue.

15. A body that does not bend due to neurology.

16. Inadequate pain management.

17. "The brain rewires itself." Yep, it does. The result is a dirt road where high speed freeways used to exist. And when the neurons don't connect up correctly, say hello to permanent central nervous system tremor.

18. There is a reason why I am not working. Not working does NOT obligate me to be your fetch and step. If I felt well enough to do you all those favors you seem to think I am capable of doing for you, I would be working. So bugger off.

19. Perception problems and visual disturbances getting in the way of a variety of activities.

20. Happy happy joy joy 12 step people who assure me that their g-d wanted this to happen to me as part of some masterful plan. Please take your mental masturbations elsewhere. I have enough of my own.

21. Automatic assumptions that my anger is somehow bad or dysfunction and needs healing. When I want your opinion, I will ask you. And besides, you are not my shrink.

22. Unclear directions.

23. Not enough help to do the things that I can no longer do.

24. A-motivational syndrome-- mine.

25. A social security disability system which denies disability to those of us who have worked all of our adult lives and now can't as well as to people who are on chemo for crying out loud. Along with worker's comp and "no fault" [we ain't paying cuz it ain't our fault] auto insurance companies, health maintenance organizations, and in laws.

***

Stuff I am happy about: being alive, being abstinent, my friends, my family, my dog, my cats, my frogs, the stuff inside of me that enables me to keep striving.

sapphoq healing t.b.i.

Job Handler, Employment Consultant, Job Developer-- oh my

2008-05-13T10:44:00.003-04:00

Laura Hersey's words echoed in my brain this morning as I was dealing with one tiny segment of the bureaucracy-- "You Get Proud by Practicing"
(to read it, goto:
http://www.cripcommentary.com/poetry.html#PROUD).
I was a bit fatigued and consequently not able to play the good grateful consumer role. That is what happens when I am called too early in the morning. I suck at that particular role anyways. My irritable brain makes that role damned near impossible to pull off on a good day.

VESID is helping to wreck the R.C.I.L.s. I read something like that somewheres and I am believing it. The Independent Living Centers in their truest grassroots form are supposed to be teaching us to do it for ourselves, not providing services to do it for us. Ah, my t.b.i. verbosity again. That is a thought to be developed and explored and researched on some other day. Yup, I'm angry. Today is the day that I am in. And today I am angry enough to take a break from seeking out more lindens to play with on secondlife and write this inane little driveling essay. The word essay comes from the French. This essay is my attempt to sort through things.

I asked this morning. Which one are you? Job handler, Employment Consultant, job developer. I was introduced to her by the first title, the most recent communication was signed off with the second title, VESID literature available on-line refers to the third title. In all of this mess, I wanted one straight answer. Indeed, the third title is the official one. Sigh. That led to my observation of what I remember how job developers worked in two neighboring counties when I was running group homes. Which led to her hot defense that she had called the one hospital and gotten nowhere (so she had told me before) and that she had called two other hospitals (oh really?) because I had "seemed interested in working in that setting." She went on to use her hot two dollar words like job carving. Not in this county. If it doesn't apply, let it fly.

The other straight answer-- sort of-- is "right now your case is on Hold but it cannot be on Hold Forever." I don't recall asking for forever. The words she had zeroed in on during my most recent vertigo attack was "getting worse." She had documented this. Of course, she reported this to the VESID Counselor and of course on the recommendation of a puny job developer I am now required to get a note for a two week attack of vertigo. The last three docs I visited within the last three weeks did not seem overly impressed by this. Logically vertigo is worse during an attack. Duh. I wasn't clear enough in my despair immediately after my attack apparently. I think it would not have mattered if I had been.

Benign Positional Vertigo. I found myself explaining this unasked. I informed the job handler that the vertigo is in my records, that surely someone from VESID should not have been surprised by the attack which is standard operating procedure and akin to having the flu. My position remains the same. If VESID has concern about my vertigo interfering with my employability, then perhaps VESID should pay for a work-up. The idea of having to get a doctor's note for having "the flu" is a requirement manufactured out of the brain of someone who is not familiar with medical terminology. It is a ridiculous requirement. I spike declare it to be so. In my unprofessional unasked for opinion, this idea of having to get a doctor's note is stupid. Next time I have a vertigo attack or any other transient business-as-usual medical thing, they can find out by reading this blog. Because I sure as fuck am not going to tell them. Damn them all. I have an appointment with the E.N.T. doc who follows my sleep apnea in June or July. The E.N.T. doc can write the note. The job developer can write that down in her report for the VESID counselor. Screw it.

I have years of experience in human services. I have some really nifty computer skills. VESID's emphasis from the beginning has been to get me into a job as soon as possible. Hang my application for the 55b/c state program. The shrink who follows my t.b.i. as well as my t.b.i. exacerbated major depression said to wait for that to come through. Somehow my wish to have a job coach lined up specifically for a 55b/c position got lost in the VESID mandates. Fuck it all. Let my own individuality and self-determination hang on the clothesline that is the ghetto where the dreams of the disabled are murdered. I refuse to live in that ghetto.

Listening to Peter Kahrmann (on the B.I.A-N.Y.S. board) talk about the brain injury itself making things difficult and how we are not our brain injuries coalesced into my determination not to live in the ghetto. The job developer didn't tell me in so many words to apply for entry-level positions because nothing in human services was coming through for me. She didn't tell me to settle. She didn't say I had to just take any job for the sake of the VESID mission statement. I internalized that idea from somewhere. Quite frankly, traumatic brain injury is an insurance liability. So here I go all dressed up with my need for ankle braces and possibly a cane, hat, glasses, inability to multi-task, a bit of expressive aphasia, don't lift more than ten pounds, don't reach overhead, vertigo, fatigue, out of work for over four years due to a car accident which was not my fault, and who knows w.t.f. the last place is saying about me-- pen at the ready. Hire me. I can't even get a gig delivering newspapers. And I want out of the disability wasteland that I have been consigned to. Yeah right. Yes, that is correct. Up and out. Watch me.

This isn't working for me. As Nathaniel Branden declares, "Doing more of what doesn't work doesn't work." VESID jerked me around for several years before I even got to see a job handler. VESID jerking me around has been VESID's standard operating procedure. Me jerking VESID around gets me labeled hostile, uncooperative, and difficult. I am hostile. To that I will admit. I suspect that most people faced with the loss of a career would not want to be cooperative while being jerked around, even if some lack the gumption to fight it. Difficult? I am not difficult. My brain injury is difficult. Frontal lobe damage makes self-regulation of emotions difficult when fatigued, Peter Kahrmann explained. Coffee soothes the savaged ravaged irritated lobe beasties, my brain screams at me. Coffee now DAMMIT. Oh shut up. In a few minutes.

The thing is, I don't want a job that will leave me starving in more ways than one. I want my career back. Or a new career. I have a traumatic brain injury, yes. I know I am impaired. I can even identify when my impairment sticks out in everyday life. I cannot pass for someone with typical neurology and I am not willing to. I have to do something. I have to do something else. What I've been doing isn't working. The "help" that I have gotten from VESID so far has been less than useless.

Maybe I need to start over and look at this whole thing again. I am sure that VESID works for traditional people [who are willing to be compliant and work for slave wages in sheltered workshops while their futures are canceled out.] Perhaps I do need to take a few courses [or get a Masters degree or more] to update my human services stuff or get some training for computers. It was then explained to me that I get to do one or the other, job hunting via her or some kind of schooling with the VESID counselor. Not both. It has to be one or the other. The job developer assures me she will report these concerns to the VESID counselor as well. Fine. She will write the VESID counselor an e-mail. Go for it. Do I have an e-mail address so she can send me a copy of said e-mail? Let's see. I could have given her fruckVESID at resistant dash witches dot com. Instead I gave her the short answer. No, I don't have an e-mail addy. Send me a copy in the snail mail. Will I be home today so the VESID counselor can call me? She stopped herself there. I heard the maybe. I will be in and out, I said. I am not sitting home in the disability ghetto watching television to wait on a call from the VESID counselor that may or may not arrive today. Damn these people.

Even if I was capable of being meek and mild, why the fuck should I want to be?

sapphoq healing t.b.i.

T.B.I. on SecondLife and on-going VESID stupidity

2008-05-10T13:22:00.006-04:00

I took a break from blogging for a bit in order to explore SecondLife(trademark owned by Linden Labs)-- a virtual world created by Linden Labs. If anyone is interested, well then you can go check it out at:
http://www.secondlife.com/join/?u=492430f4263844fdb2cb9ef952ebf4a1

or at the potentially less threatening:
http://www.secondlife.com/?u=492430f4263844fdb2cb9ef952ebf4a1

and for those of you who aren't interested, obviously you don't gotta. End of unpaid commercial.

Anyways, my avatar (a little figure in clothing used to represent me in Second Life, thus from here on in will be referred to as "my avie" or simply "I" -- past English teachers be dammed) got to pick a gender and some clothing, went through utter confusion of orientation, and then was deposited along with other newbies at a Welcome Center. From there, my avie went off exploring. SecondLife is total eye candy in 3D.

After flying around for a bit and collecting a bunch of free clothes, I found that I was lonely for human communication. I went to some 12-step meetings (we're everywhere!) and found a few folks there to talk to. I began studying the events notices, joined a few groups, bought a bit of land. I began my first brain-damaged experimentation with 3D building and started going to events and classes regularly.

My avie got a job as a stripper in a club, something for which I make no apologies. The Lindens (money in SecondLife) are good. Real life mate doesn't care what I do in SecondLife. Dancing is varied and automated. The mobility and vertigo problems which plague me in real life are absent there. Plus, like most other avies, my avie is younger in appearance, skinnier, hotter, and has better hair than I do!

Besides exotic dancing and other events, I also found that the Asperger's community is alive and well on S.L. That made me happy and I now have some friends to hang with who do not expect great social feats from me. Many of them have some of the same passions that I do and that is excellent!

And yes, there is a t.b.i. group on SecondLife. We meet usually on Saturday mornings S.L. time at a comfortable and extravagant 3D clubhouse on a beach. The house is situated on an island. There is the ocean right there, a pleasant deck, several dogs, the meeting room itself, and offices upstairs. The man who facilitates the t.b.i. group lives in the States. He is very welcoming. I immediately found myself at home there.

When I told him about the most recent VESID stupidity, he was appalled and asked me if I have a case manager, case worker, or service coordinator. I am not eligible for Medicaid and thus not eligible for the T.B.I. waiver in my state (a situation which pisses me off-- the financial hit we have taken from my car accident and subsequent loss of career has been astronomical) and so I could not navigate the system well enough to get a Service Coordinator. I had tried but nothing much happened there. The facilitator-- also a T.B.I. survivor-- offered to meet with his case manager in order to seek out information for me and will be checking back with me soon. He also suggested that I call the Office of the Aging and the United Way in my county. I hadn't thought of that. More on the hunt for service coordination as it evolves.

The last time I had spoken with the job handler (a young woman who means well I suppose but who is young enough to have a MySpace account under her own legal name) she expressed grave "concern" over the latest two week bout of vertigo. This should not have been news to her or to anyone else related to VESID. It has been documented in my records that I have benign positional vertigo. The benign means it isn't a tumor or anything causing it. The positional means it is outside of myself, that is to say that the room/the world slides to the left. Vertigo means dizziness of a sort. Thus, I am not dizzy. The world is dizzy. I am used to it. I consider my 24 hour vertigo to me similar to allergies. And the occasional attack--where the world dips and spins madly-- to be akin to a common cold.

The attacks are annoying. The singular medication which the doctor demands I take during the worst of the attacks is annoying. The med leaves me able to navigate my home looking like someone who is slightly tipsy rather than totally plastered. There is not much that I can accomplish during an attack. Feeling miserable, I spend a bit more time sleeping than I usually do. Although I cannot do what I used to do, I certainly am not "home watching television." (That is what most voc-rehab counselors assume that folks with disabilities not slaving in sheltered workshops are doing with their days.) During the attacks, I am too miserable to even consider much teevee or much of anything else. So sleeping fills the bill. And serves to keep me from descending into total fatigue afterwards.

Consequently, when the job handler expressed her cloying concern over my latest two week attack I was not feeling a need for sympathy. I was feeling pissed off. And I knew that her concern was a smokescreen for another message. I may be brain damaged but I am NOT stupid. The job handler went on to inform me that until I got a doctor's note saying I am healthy enough to be nagged by her on a regular basis over where I had put in job applications and gotten interviews that the VESID counselor was putting my case on hold. I asked her, "Is the VESID counselor paying for my doctor's visit to obtain such a note?" Her answer was obviously no. "Well then, the VESID counselor will have to wait until I go to the doctor anyways for such a note. Do what you have to do." Shit. The primary care doc does not require me to see him before, during, or after these attacks. And as I've said already, vertigo to me is like allergies and colds.

I thought that would be the end of it until I delivered the note. But no. The job handler called my answering machine twice more. I didn't return the calls because: 1. a close friend who is also an addict was in the hospital and I was busy in a daily fight for her to get adequate pain relief, 2. I figured if my "case" was on hold then that meant that I didn't have to deal with the job handler, and 3. I just plain didn't feel like it. Angry? Oh hell yes. I was angry and I still am. I am not grateful for the crumbs. I can't get Walmart's to hire me, never mind any agency that offers jobs in my previous career. Hell. I can't even get the local newspaper to agree to give me a route. And I intensely dislike cloying concern and people nagging me for information about exactly where I've applied for work. To top it off, I am at the point where I am not sure that I am able to get back to work of any description. What part of, "I don't fucking feel well enough to do anything for four hours a day, never mind eight hours" is not clear English?

I am not a quitter by nature. I am tired of VESID, tired of incessant demands, tired of nagging whiny voices, tired tired tired. The shrink who understands t.b.i. has maintained from the start of all of this foolishness that the original plan is NOT to work even part-time until a 55b/c job comes through with the state. He tells me repeatedly that the 55b/c program expects me to be a fuck-up (not in so many words, he says it nicer) because I will be hired with the knowledge that I am disabled. With the 55b/c program, I will provided with a job I can do and a salary that I can live on. And the added benefit because I will be hired as a fuck-up, I would really have to be outrageous in order to get fired. The problem I am having in my interviews is that it is obvious that I have some serious impairments and no company wants to deal with a new employee who has vision problems, auditory processing problems, non-existent capacity for multi-tasking, can't navigate stairs well (the vertigo), and is at risk for falling in spite of the braces and cane. And let's not forget the fatigue.

So there is SecondLife. I have a sort of goal there to amass enough Lindens to go into virtual business for myself. And there is VESID and the professional and para-professional paid "helpers" associated with VESID. And there is my life and there are my crumpled dreams.

Nuttiness and Brain Injuries

2008-02-28T19:49:00.005-05:00

Over at http://www.commiejournal.com/users/sapphoq/18943.html (as well as at http://radical.sapphoq.com hopefully after the f.t.p. thingy quits freaking out and starts working correctly), the reader will find my reaction to the popular and highly inaccurate media frenzy reportage of "Oh Noes. Anti-depressants Don't Work."

This was of concern to me for several reasons. The first one is that 90% of traumatic brain injuries exist in the left frontal temporal lobe. This region of the brain can screw with the head quite literally, in other words-- damage there can make pre-existing mental conditions worse or really un-nice things like major depression of the suicidal variety or schizophrenia can indeed be induced for the first time.

I've gone to at least one RaRa Brain Injury Conference where at least one t.b.i. survivor was willing to vehemently deny that a mental condition of the psychiatric variety can be part of the picture of the problems and symptoms associated with his or her own brain injuries. Thus, some percentage of us who are discriminated against at times because of our state of being still feel free to discriminate against others who have their own state of being and oh noes we cannot be like those mentally ill freakish people. Well, we can. And often we are.

Aside from the neurological difficulties and the chances for increasing psychiatric symptoms, we are also at risk for active addictions-- or for relapses if we were abstinent before our brains got insulted. Active addicts are not known for the clearest thinking or the healthiest-looking behavior. If you don't believe that, head for the nearest barroom or crackhouse. Yes, psych meds are over-prescribed and yes, anyone who can live well without them should do so. Enter a genuine brain injury (not the nami mommies generated "brain disease") and suddenly there is a wrench in the mix. Folks with messed-up neurology often find that no amount of natural supports and total life changes can make up for the malfunctioning of their left frontal-temporal lobes.

The second concern was the media frenzy itself. The public reporting of this was astonishingly bad. For that I totally blame the journalists and editors of the newspapers. The average citizen doesn't have access to Medscape and thus misses out on some of the real deal. The thing is that the literature review of the research studies was not purposed to take sides in the shrinks rule and the nami mommies know best vs. the anti-psychiatry debate. Nor was it designed to address any of the rather serious and excellent questions regarding the state of treatment of people with mental conditions. The literature review team wanted to study biases in the reporting of results of studies of the effectiveness of antidepressants which were done within a certain timespan.

A bit more of background: In the year 2004, Congress began to investigate the F.D.A.-- because the F.D.A. tends to use research studies that are according to the desires of the FDA to justify the yea or nay of licensing drugs for public use-- rightly so, although I do not trust politicians to know what the hell they are doing when trying to create medical policies. Consequently, some folks from the A.P.A. and the child-adolescent shrinks version of the A.P.A. approached the A.M.A. regarding research studies and the idea that they should all be registered in order to be recognized. This was in fact done. However (predictably) making researchers jump through more red tape before conducting research did not help the F.D.A. become less biased in its use of the results of research studies for its own purposes-- approving or disapproving new drugs for the American public to be prescribed. A literature review team decided to review some research studies done on antidepressants and how those results were used by the F.D.A. The literature review team found that the FDA is still biased. The mediacs of the popular press didn't bother informing the public of the expressed purpose of the literature review nor did they deem to mention the background essential to understanding the literature review.

Thus, my third concern. That a few folks may conclude that since the troublesome pills they were advised to take are causing them to gain weight and some other stuff don't work anyways, why bother? Flush 'em. Then again, anyone who is prone to wanting off the psych drugs can use accurate information or inaccurate information as their impetus. So screw that thought.

That (probably a more realistic scenario) the health "maintenance" organizations i.e. medical insurance companies will use the study as erroneously reported to justify denying necessary psych meds to those people who wish to take them and need them in order to have some quality of life or at least to have a break from psych symptoms. I hate insurance companies. Those of us who have had to fight for services and treatments usually do.

To any mediacs who were involved in the latest shameful widespread yellow journalism-- shame on you.

sapphoq healing traumatic brain injury

p.s. In case anyone is curious: As far as the meds vs. meds plus talking vs. meds and natural supports vs. no meds and only natural supports debate, my own beliefs are that in a general way:
-psych meds are over-prescribed,
-antidepressants don't work well on folks who are not clinically depressed nor on folks who have a chronic low grade clinical depression,
+a complete physical should be done before placing a patient on meds,
+anyone who is able to do without the meds ought to, -some of us can't (+Dr. Daniel Fisher of the National Empowerment Center who at one time was diagnosed as having schizophrenia bases his entire psychiatry practice on evaluating people to access whether or not they can function without the meds),
-and that the nami mommies are full of crap when calling psych conditions "brain diseases."
I am also against:
-forced drugging and
-forced court-ordered out-patient treatment and
-forced e.c.t.

Broken Things

2008-02-18T20:27:00.002-05:00

I.

It was cold outside, but not that cold. Still, the ice hadn't fully melted and pissed-off-woman wasn't real good at maintaining an upright position on the slick stuff, even with the fancy smancy ankle braces. The dog required walking and so p-o-w headed to the abandoned building where the roof overhang kept a bit of sidewalk free from the troubling stuff. P-o-w parked along side the building so she didn't have to slide across the parking lot to get to the sidewalk in question. Three women, two golden retrievers, and one schipperke were heading for the same sidewalk. None of the dogs were attached to leads. Two of the women were dragging their goldens along by the collar and the third had picked up the schipperke and was cradling him in her arms.

P-o-w stuck her head out of the car window. "Are your dogs friendly?" she asked. The three women looked at her. "Friendly?" p.o.w. repeated while pointing to the two goldens and the schipperke. "No," one of them spoke up at last. Undeterred, p-o-w parked her car in front of the targeted sidewalk, where the small party of women and allegedly unfriendly dogs had just been heading. They turned around and left. That was their right. And indeed their obligation if their dogs truly weren't friendly and they weren't able to control them.

P-o-w hung the required placard on the mirror since she had just created a parking space. She hooked up the dog and grabbed Benjamin Copernicus Galileo (the cane). She locked the car. She and the dog walked. The dog was happy and p-o-w smiled.

II.

"Are your dogs friendly?"
"No."

"Are your dogs friendly?"
"No. We happen to have the two most vicious golden retrievers with us right here. And the schipperke is a little daemon."

"Are your dogs friendly?"
"We are afraid of other dogs."

"Are your dogs friendly?"
"We are afraid of you because either you intend to kill us or your disability is contagious."

"Are your dogs friendly?"
"We aren't friendly. We don't want to talk with you at all. Your need for an accessible place to walk your dog inconvenienced us."

"Are your dogs friendly?"
"We really just wanted to be alone in this wide space and you weren't invited."

*Epic fail*

III.

Pissed-off-woman stamped out letters in the snow. The letters read: F U c k U 4 J U d g i N g M E . She and the dog walked. The dog was happy and p-o-w smiled.

sapphoq healing tbi

Domestic Violence and Head Trauma

2008-02-16T08:14:00.003-05:00

Who is Christie Prody? She is O.J. Simpson's latest flame of the past nine years-- on and off. You folks do remember O.J.-- the guy who some people believe got away with murder. Currently, he is not being blamed for the fall which led to Ms. Prody's hospitalization in a Florida I.C.U. with a significant head injury. She reportedly fell at a gas station in Miami. Shame on the yellow journalism of the National Enquirer, O.J. and his lawyer say. That paper claims that a neurodoc says the injuries that Ms. Prody has are more often related to assault rather than a fall. O.J. is out on bond and will be going to trial in Las Vegas. He stands accused of armed robbery and kidnapping in connection to an incident at a casino there involving two sports memorabilia collectors and a gun.

I wish Ms. Prody the best, regardless of how her brain injury was acquired. If O.J. is responsible, I hope he fries. If not, I hope the newspapers don't try him for something he may not have done.

sapphoq healing tbi

http://www.startribune.com/local/15638092.html
http://www.kansascity.com/news/nation/story/490699.html
http://www.local10.com/news/15311323/detail.html
http://www.nationalledger.com/artman/publish/article_272618900.shtml
http://www.thecelebritycafe.com/features/13832.html
http://people.monstersandcritics.com/news/article_1391340.php/O.J._Simpson_and_blondes_still_a_bad_combination
http://www.contactmusic.com/news.nsf/article/simpson%20denies%20prody%20assault%20accusation_1059651

Making Work Work

2008-02-06T22:15:00.000-05:00

"Even in the future, nothing works!" -Dark Helmet in the movie Spaceballs

A job interview today. For a job for which before my car accident I was considered to be overqualified for. I interviewed well, she told me. She enjoyed talking to me. It lasted an hour. She said she was leaving for vacation and did not wish to leave me hanging. She would discuss with personnel and tell them to go ahead and have me interview with other people.

Damn this brain injury. Damn these feet, the vision, the inability to multi-task, the bad back.

Her concern-- the position is a third shift and take-downs would surely be involved. Could I do them now? The job is very physical. That was her concern. And it is a legitimate one.

The only thing I could say in response was yes that is a valid concern however (insert words that mean I am one determined mutherfrucker no matter what and that I can learn anything I need to learn) and perhaps I would need some extra practice with the other two staffers that I would be working with...their styles...all of that. What I didn't tell her is that I've always hated doing SKIP-R. I hated doing two-person escorts at my last job the few times I had to. And I didn't tell her about the vertigo even after being asked specifically about all of the t.b.i. crap
and complications and residual effects.

The fairly useless job handler claims she will go in tomorrow to get me those follow-alongs (in the other three departments) that the moronic VESID folks funded me for. "VESID won't support any jobs that are not within your limitations," the job handler tells me. She is young enough to have a MySpace page as her main blog, complete with an exaggerated description of her profession. And stupid enough for her user name to be the same as her legal name.

(Yes I have a MySpace page too, however it is primarily to keep up with heathen
news that a friend publishes there.)

Has she even read the list of limitations from various doctors? One of them says 15 hours a week. I'm guessing that the morons from VESID skipped over that one too. Too inconvenient. It would require a filing of a form to get an exception for the usual requirement of "must be able to work at least 20 hours a week." No overhead reaching. No lifting over 10 pounds. Avoid night driving. No carrying loose things downstairs. There's a bunch of them, along with bunches of diagnoses from various doctors of things all related to my brain injury, or made worse by my brain injury. I specifically pointed out the limitations to her several times. The civil service job she told me about today was for being a corrections officer for crying out loud. I wanted to bang my head against the wall after that revelation. I already have diagnosable brain damage (yes folks, traumatic brain injury is a polite word for brain damage) so I resisted the impulse.

Bits of depression threaten to rain down on me. Time to keep going. Routine helps. E-mail, blogging, and cognitive work tonight. Drug court tomorrow with a friend's daughter and keep putting in those applications. I won't stop with that until a job offer comes through. Walk with the dog. Practice walking on uneven ground with the dog. Housework would be a good thing. Water the plants before death ensues. Do the next clean thing. You drink, you drug, you die. A line from a rehab movie I saw once during my torturous time tutoring adolescents. I prefer adolescents in groups of one. Huge problem. There were 26 of them. But I stuck it out for my obligatory 3 years before beating feet out of there. The money wasn't worth it.

And fuck VESID. It would be nice to have their support (i.e. job coach) on a job however if that becomes "not able to happen by golly because whatever job violates some limitation or other" I'm going to go to work anyways. Even if it means working at the local Walmart as a tire-changer and an oil-changer. Even if it means using a fricking cart to bring the tire to the car.

The local Walmart is so desperate for help that I have an interview to do that on Monday. "Did you apply to be a mechanic by mistake?" the woman asked me on the phone after she found out that I never done either. "No," I told her, "I applied for all of the positions. I am willing to learn whatever you or someone wishes to teach me." Then I heard, "Oh well that is really hard work and blah blah blah I will call you back when there is a service writer position open and blah blah blah." She called me back an hour and a half later. That interview was supposed to be tomorrow but she changed it to Monday. That's okay. I haven't run out of places to apply to.

Because I am going to work this year. Even if it means missing the week in Maine with my husband this summer and the week visiting my friend Philly Dave this summer. I am going to work this year. I am going to work this year no matter what. If nothing in the future works, then I am going to make it work or beat it beyond recognition in my endeavor.

sapphoq healing t.b.i.

Total Aggravation

2008-01-21T02:30:00.000-05:00

I got accepted into a 55b/c program which basically means that I may be able to get a (real) State job with accommodations. The shrink (who is well acquainted with more than drugging people to death and is actually keeping track of what is happening with my traumatic brain injury (from a car accident); and who is familiar with the program) tells me this is my best bet for getting employment after being out of work for four years due to my car accident. I don't just want any old job where the chances are high that the salary will be not enough for me to live on and that I will get fired. I can't multi-task at all anymore. I wasn't really good at it but now any ability I had to multi-task is totally dead. I want a job coach to assist me during the first couple of months or so at the State job which I haven't gotten yet. This has been my plan since I first heard about this 55b/c program.

(VESID is OVR in other places but in New York State it is called VESID).

I told the VESID "counselor" (third in less than three years) this. Apparently, the paperwork, my suppos-ed Individualized Employment Plan-- which took a couple years in the making because I had refused to go to their favored agency connected with the sheltered workshop for job coaching services-- requires a specific job goal. Fine. A couple of months ago, I rattled off several job choices so that way just maybe I could finally get to the agency of my choice to arrange for job coaching.

I finally got to meet with the job handler who then would assist me in helping me find a job. Again, I repeated myself by telling her that I want to get a job with the State via the 55b/c program. (She has never heard of said program). Again, the suppos-ed Individualized Employment Plan requires a specific job to fill in the blank. "Working for the State" is not adequate. The job handler changes the job goal from "animal care technician" to a state job title. This requires the VESID "counselor" to rewrite the I.E.P. but I don't care about that.

During the meeting with the job handler, I learn that VESID approved my request for job trials. A job trial means I would get to follow someone on a job for a couple of hours to see if I could possibly stand doing a job like that one. I am approved for 15 hours. 5 for the job handler to set up a few. 10 for me to actually shadow people on several jobs. I tell the job handler very clearly that I had asked for this and that I want this. This was in December. Okay.

Now it is January. The job handler assumes the role of a nag. She calls me with a lead for a full-time job in the newspaper-- one that would require extensive multi-tasking but no matter. Note full-time. (My plan has been to start part-time to see if my fatigue level will allow me to work up to full-time. I can do this at the State with accommodations under the 55b/c program. (My aunt is the one who is actually helping me regain some stamina because the professionals do not understand how freaking tired I am from the brain injury. I am glad that my aunt is working with me on this because no one else is). I am a bit aggravated but that's okay. I decide to go to the Job Service place which is part of unemployment because they will re-vamp my resume for free. The job handler is nagging me to go there to look for work.

Now it is several days and a weekend later. I am leaving for my appointment with the shrink. I get a letter in the mail from the job handler. It is an advert for a "job fair" listing several full-time positions with an agency and a note advising me to attend said job fair if I am interested in any of these jobs. (The jobs happen to be in direct care with people living in group homes and I cannot lift due to my spinal injuries {car accident}. All of these things are documented in my records which both VESID and the job handler have. But no matter. The job fair ended shortly before the postman came with the letter.

This is January. There is no longer any talk of job trials. There is no acknowledgment by the job handler that I am endeavoring to get a State job at which time a job coach might be useful. I go see the shrink after the mail comes. I determine that I am going to call the 55b/c program people to find out if there is anything I can do to help them get me a State job. The shrink says they are just supposed to find me one and I don't really have to do anything except wait. An acquaintance who had gotten accepted for 55b/c last year in fact was offered a job some time later without having to do anything. Still, I think that sending them a new fancy resume and talking to them on the phone might be a good idea.

VESID's whole focus is to get me working ASAP and it doesn't matter about what is best for me. And VESID in the region where I live is the worst one in this state.

I would tell VESID and the job handler to bugger off except that if I quit VESID, the delayed review of my disability would then take place. I can't afford to lose disability right now unless I am working and able to maintain the full-time thing. My mate is totally obsessed with money and thinks I should have magically gone back to who I was before my car accident several years ago so there is that. My good friend keeps pushing me to get jobs at various places where I know I just can't do it. (For example-- a bilingual staff at a telephone hotline for tax help. Problem. I can write Spanish better than I can read it and read it far better than I can speak it. My voice is too soft to be effective on the phone, I can't multi-task, and people who speak Spanish tell me they cannot understand me and I am butchering their language). My primary care doctor thinks I should have gone back to work full-time two weeks after my car accident and the last two times I saw him, I got a bit angry when he asked me, "So, where are you working now?"

I have determined my course of action and I am taking steps toward my goal. I even have a plan B in case the 55b/c program can't come up with a state job for me in the three years allotted for this before I would have to apply again.

I feel like the people around me (except for my aunt and the shrink) are all nagging me to hurry up, go to work full-time and forget about what I want to do. Additionally, the people around me (except for my aunt and the shrink) are acting as if I am nuts and they are the sane ones. My fatigue is real. I am not a faker or a poser. The last several years have been really really taxing to say the least. I now have sleep apnea (I love my c-pap machine and before that, I felt like I was sleepwalking through life) and supposedly I now have "hypertensive heart disease, undifferentiated, without hypertension" (a gift from the pc doc and I may have to go on a cholesterol-lowering drug if the diet hasn't done enough. I've had untreated high cholesterol for seven years now because my good cholesterol is really really high. After awhile, the good cholesterol can stop being as effective and then a script has to be given). I have the fibro-related aches and pains which I treat with exercise. The brain fatigue which I treat with extra sleep. The cognitive difficulties which I keep doing the computer exercises for. And a bunch of people who are nagging me who I keep trying to ignore. Because trying to explain to them my Plan A and Plan B hasn't worked.

If there is anything that I am not perceiving here, please tell me.
Thanks,
spike

Soliloquy 1/20/07

2008-01-20T13:35:00.000-05:00

There is a drive in me to find people to connect with. Yet somehow my efforts are often futile. I am the unconnected, the untouchable one in a society that shuns the atypical. And yet what choice is there? It is between finding something to connect with, if not someone; and sitting in a rusted broken down automobile staring at the railroad tracks knowing that the freight trains just aren't fast enough. Oh tragic despair! Of what is the stuff of neurology that leads me to this place where
even the loners dare not go? I who was once so full of promise watch as my dreams slowly turn to dust.

As my dreams dwindle, obesity takes over and balloons obscenely-- trapping me in folds of putrid flesh-- until I am unrecognizable. Diets failed. Lifestyle changes failed miserably. This is who I am today. I define myself by numbers on a scale. Society defines me by my non-existent paycheck.

When I was working, I had arrived several times but I hated it. Now that I am not working, I no longer have teary outbursts or meltdowns. I am old and my body is falling apart. "So where are you working now?" Fuck you. Thanks for still believing in me when I don't believe in myself.

And fuck you. And fuck you too. The stupid VESID morons told me lies. They strung me along for three years. Three VESID "counselors." The cunt I used to smoke pot with when we were co-workers. The man with a handshake like a dead fish. The new one with no discernible personality. All of you left me to rot. And I let you do it. That is my largest failure.

My get up and go and my AC-shun Ac-shun drum drum A-C-T drum drum I-O-N were casualties of sheared neuronic pathways and synapses which no longer have any electrical charge. "Get out of bed," my elderly aunt tells me over the telephone wire. "Get dressed." I do. I just keep forcing myself. Any alternative is worse.

Waiting. Waiting until I feel well. Waiting until I feel well enough to. Waiting until I feel. Waiting until. Doesn't work. I know this as truth from my past. I remember.

And so I get up. Get dressed. Spend time on the computer. Take care of the dog, cats, frogs, fish. Blog about my reluctance to do housework and my severe procrastination. And then I force myself to do something. Anything. Sweep the floors. Pick up. Move things around. Spent too easily, I sleep. Get up again. Force myself to do more. Buy the newspaper. Look for a part-time job that I might be able to stand doing. Call the 55b/c personnel office to ask what I can do to expedite the getting of a state job.

Perhaps dreaming isn't so elusive after all. Hope is not dead entirely. I lean over, adjusting the ankle braces against my white athletic socks. I breathe. And I begin the task at hand. Building my life anew.

sapphoq healing t.b.i.

Drunken Principal Principles 1/12/07

2008-01-12T23:48:00.000-05:00

An Indiana school principal, Scott Syverson, was stopped on December 22, 2007 by an officer. Dr. Syverson was drunk. The police officer was told to use his discretion, so he elected to have the principal driven home rather than arresting him. A prosecutor later fixed that by filing charges. The principal is currently on administrative leave until sometime in February when the school board will meet.

Of note particularly is this letter written by Lorrie Bjornstad about what could have happened:
http://www.indystar.com/apps/pbcs.dll/article?AID=/20080112/OPINION01/801120386/-1/LOCAL17
but didn't. Well, it did happen to her daughter. Although Principal Scott Syverson was not the cause of her daughter's traumatic brain injury, he could have been. The driver who did was also intoxicated and also drove that way after a party celebrating the beginning of Christmas/Winter vacation.

(The school board member who had hosted the party that Dr. Syverson attended has said that he did not appear to be impaired upon leaving her home-- self-serving interest? perhaps. The official trouble was that he and two other buddies had gone on to a pub and stayed there for two more hours. Regardless of where he was when his blood alcohol level rose above what is allowed by the State of Indiana, the point remains. Dude was drunk. Dude could have gifted Lorrie Bjorstad's daughter with her t.b.i.)

Dr. Scott Syverson should suffer the consequences of his actions legally; and professionally depending upon the policies of the school board. Additionally, he should be required to get treatment before resuming any duties at any school in the state in any capacity. There should be no extra punishment or no lesser punishment than that afforded to anyone else caught driving drunk.

Having the "disease" of alcoholism or any other addiction-- sorry disease concept fans. I am an old diehard who maintains that it is a condition-- should not be used to excuse bad behavior, period. I fully support Drug Court because there are specific stringent requirements which must be met there and participants have a real chance of turning their lives around. I hope that the principal winds up in a drug court program after serving some jail time and I hope that his being a prominent public figure in his town will not interfere with any consequences of his actions.

Active addiction sucks. Having to live with a traumatic brain injury also sucks.

It's "nice" I suppose that some students are circulating a petition in support of their principal. My sympathies are not with the principal. My sympathies lie with every victim of every driver who has gotten behind the wheel of any transport vehicle while drunk or high or both. Some of us live. Some of us die. Some of us live and our lives and brains are forever changed.

sapphoq healing t.b.i.

Brain Injuries and P.T.S.D. 12/25/07

2007-12-26T00:22:00.000-05:00

Several articles have cropped up declaring that brain injuries "cure" Post Traumatic Stress Disorder. In reading through them, I found that what they meant to say is that brain injuries demonstrated in either of two specific areas of the brains of research subjects lessen the incidence of P.T.S.D. The two areas are the amygdala and the vmPFC or the ventromedial prefrontal cortex. The research results reported are actually fairly impressive. Folks with insults to the amygdala had zero incidence of P.T.S.D. And only 18% of folks with insults to the vmPFC developed P.T.S.D.

No one is planning to go out and deliberately inflict brain injuries upon those with P.T.S.D. The idea of surgery to insert clips to dull activity in one or both areas is rather uninviting. Use of magnetic stuff is more palatable but also more suspect as junk science.

Nothing reported over on Medscape yet so it is too early for me to get excited.

sapphoq healing t.b.i.

http://www.washingtonpost.com/wp-dyn/content/article/2007/12/23/AR2007122300601.html

http://www.sciencedaily.com/releases/2007/12/071224124639.htm

http://timesofindia.indiatimes.com/Brain_injury_may_be_a_cure_for_PTSD/
articleshow/2647593.cms

http://www.guardian.co.uk/science/2007/dec/24/medicalresearch.neuroscience

Circle Work with Insects

2007-11-30T00:28:00.001-05:00

I have been thinking about stealing spiritual practices from other cultures, particularly [in the Untied States] the indigenous tribes of the Americas. There are new agers, white lighters, wiccans, and some folks who don't know what else to do with their money who are all souped up on shamanism, medicine circles, and other practices which they believe to be the real thing. And because there is an average of a sucker born every minute, there are lots of grown up suckers willing to part with their hard-earned cash to go on vision quests. And there is a market for those glossy slick-backed "Medicine Cards" with the nice drawings of Bear and Shells and stuff on them.

Awhile back, I posted to an e-group which I no longer belong to asking about how come no one ever claims the cockroach as their special animal. Everyone wants wolves, lions, tigers, bears, eagles, buffaloes, deer, frog. But absolutely no one wants to have any sort of spiritual relationship with a cockroach. The cockroach is the most successful evolutionary experiment, able to adapt under a myriad of conditions, and quite the traveler too. The spiritually bent should be fasting and begging for Cockroach to be their power insect or totem animal. But alas, not.

Now and again, there are folks who assign mythical beasties to the four cardinal directions or elements in a working circle. Dragons and unicorns abound, right along with the more traditional undines and salamanders. Phoenix and sirens, gargoyles and mermaids yet nary a real insect is noted.

For those who are so inclined, I present the Circle of Insects!

earth: deer tick, cockroach, wood bee, head louse, termite, house fly, ground killer wasp

air: flea, white-faced hornet, pubic crab, fruit fly, horse fly, jumping spider, hover fly

fire: firefly, honey bee, wasp, sweat bee, fire ant, red ant, scorpion

water: skate, diving beetle, mosquito, springtail, noctuid moth, leech, stone fly
sapphoq healing t.b.i.

Job Ideas for spike q. poet

2007-11-22T02:01:00.000-05:00

*Disclaimer: not necessarily approved of by the local unimaginative VESID/O.V.R. office*

1. Grow hissing cockroaches, crickets, and earthworms-- may distress lover.

2. Photograph frogs.

3. Breed frogs-- too technical. Apparently frogs in captivity can't figure out how to do it without
human intervention.

4. Rescue unwanted or hurt amphibians-- lover thinks fifteen frogs are enough.

5. Raise llamas--- may really distress lover.

6. Trail guide and llama trekking-- requires llamas.

7. Breed snakes-- lover will move out.

8. Receptionist at very quiet office with no telephone lines.

9. Starving artist-writer.

10. Inspirational speaker.

11. Career coaching.

12. Have year round yard sales.

13. Sell things on the web-- requires things that people will want to buy.

14. Drive a truck-- spinal problems will rebel.

15. Teacher's aide-- hate kids in groups of more than one.

16. Landlord-- been there, done that, ain't doing that to myself again.

17. Event planner-- poor organizational skills.

18. Be a clown or stand-up comic.

19. Start a new religion-- bad karma.

20. Grow flowers in a greenhouse-- requires greenhouse.

21. Professional poker player.

22. Raise corn, hay, and other stuff-- requires farm.

23. Own a human services agency-- would rather manually shovel cow shit.

24. Restaurant hostess at a very slow restaurant.

25. Cook at a small diner-- people will die.

sapphoq healing t.b.i.

Four Years

2007-11-12T00:09:00.000-05:00

Last week I passed my four year anniversary since my car accident and my traumatic brain injury. I thought somehow I would be working by now. Although I am closer to working now than I've been. Yeah, I am writing a novel and that is cool. To me though, that doesn't really "count" until the contract has been signed and an advance check is in my sweaty hands. I have one potential job substituting for a dishwasher should they get sick and another possibility to work for a friend who is manager at a restaurant. I don't think I will mind washing dishes once in awhile. Working at the friend's restaurant-- well, I gotta start over again somewhere. I haven't even been able to get an interview to deliver newspapers. So I will take what I can get and remember it is just for now, just until I can find something else.

I still have my vision problems, the mild expressive aphasia, and the occasional vertigo. As far as medical experts say, traumatic brain injury is permanent. We improve over time at some stuff, especially if we keep working at it but the basic brain injury itself is there and will be there. Folks say that "the brain can regenerate isn't that amazing?" sort of thing until I am sick of hearing it. Again, I will tell yas that yes, some neurons can regenerate however they do not always reconnect to the correct halves [causing cognitive slowdowns] or at all to anything [causing a central nervous system tremor which yes I do have].

I will never be who I was. I won't lie for the sake of the comfort of others and claim that who I am is a new improved model because it isn't. I don't believe that "all things happen for a reason" or that "I'm right where some god wants me to be" or that "there are no true coincidences." What I think is that life is sacred-- neither fair nor unfair-- and that it is the finite part of our selves that requires and maybe even demands meaning, thus we create it. I don't particularly feel bound by any compulsion to have reasons and lessons for learning. I think that life is far beyond our petty little explanations. Most other folks I know find comfort in believing that there is some sort of grand plan. That stuff doesn't help me though so I dumped it.

Some things have improved. My hearing-- which was supersonic before my accident and right on the borderline of needing a hearing aid or two afterwards-- has re-established itself into the supersonic category as per the last audiology test this summer. The addition of a c-pap machine after two sleep studies and a diagnosis of sleep apnea has really helped me to have a life [although it takes me much longer than average to get into REM sleep, at least I am dreaming again at night]. I keep working on my aphasia and now most folks don't notice it. I got involved with an incredimail creators' group [thanks Jeremy Crow] and that has been of immense help to me in restoring motivation.

If the accident didn't happen, we would have been better off financially and I would not have had my career viciously kicked out from under me. If suffering builds character and strength, I certainly could have done with a bit less of both of those things. In a perfect world, folks who smoke pot would be picked up by the magic yellow submarine bus and driven anywheres they had to go. [The driver who ran my car into a house was high on marijuana]. In a perfect world, we wouldn't need lawyers to protect us from our places of employment after we get hurt, little kids wouldn't be abused or die of starvation and diseases and all stuff like that. But it is not a perfect world. So I just have to do the best I can [most days] with what I got. As Nathaniel Branden would say, "It is what it is."

By this time next year, I hope that my novel will be written and submitted. I also hope to be working at least part-time at a job that I can tolerate. Still be married and in love with my husband and he with me. Saving money for my next cross-country trip. [I want to go every year or every two years for the rest of my life]. And still enjoying my animals, the woods, and life.

spike

I am writing a novel, as I've said before and thus am behind once again in visiting all of your blogs and commenting. Sorry for that. I will get to visiting all of yas to leave comments over the next few weeks or so.

And anyone who has a dog, if you haven't watched The Dog Whisperer, you ought to give it a whirl. He has most excellent ideas about dog psychology and communication. My current dog who is really angelic has become even more perfect since I started doing some of the things he suggests.

A QUESTIONNAIRE

2007-10-09T20:04:00.000-04:00

The wonderful folks at Medscape bring an article detailing a questionnaire which NCNeuropsychiatry P.A. has made available on-line to medical personnel which their patients and/or family members can take. It has 207 questions which are correlated to groups of symptoms and specific conditions indicated by them.

The questionnaire is notable for traumatic brain injury patients because it includes a short test for problems related to concussion. Results below for a fictitious patient who presents with moderate disability from a traumatic brain injury have been directed pasted from the test site:

*****************************************************************************

SYMPTOM SCALE

CONDITIONAL SCALE

[end of cut and paste from site]

********************************************************************

It is noted that report of symptoms does not indicate that the patient has or doesn't have any of the conditions associated with them. Some patients may over-report symptoms and some others may under-report. The test results of the fictitious patient above may indicate perception of mild problems with attention, mood stability, fatigue, and sleep. The symptom clusters aggregate into a possible clinical picture of the presence of post-concussion difficulties as well as mild autism and Asperger's. An experienced qualified clinician can utilize the testing results in fact gathering and diagnostic interviewing. Because the patient can re-take the test throughout treatment as well as at termination, there is a direct way to measure any progress in reduction of symptomology.

NC Neuropsychiatry P.A. offers evaluation, treatment, and medication management for those people who have symptoms of a variety of disorders including but not limited to serious psychiatric conditions, learning disabilities, cognitive impairments, A.D.D. ad A.D.H.D., and broad autism spectrum disorders as well as traumatic brain injuries. Clinicians are researchers as well as qualified specialists and the practice also offers clinical trials.

The website itself is easy to read and easy to navigate. From the well-written section on traumatic brain injury, I found that traumatic brain injury is one subset of acquired brain injuries. The practice also offers for purchase a series of tests which measure things like working memory, ability to shift tasks, and flexibility in cognitive tasks. The tests may also be accessed from a computer [the clinician can download a complete battery] and norms are included. The series of tests together is referred to as the CNS Vital Signs Assessment Battery. The things that the tests propose to measure have implications for traumatic brain injury patients and for those with mild cognitive impairments, A.D.H.D., and stroke.

The subject of words, definitions, and labels has recently come up in two e-lists I belong to which deal with brain injuries. One of the ideas that was expressed was that researchers are only in it to "make a name" for themselves thus they have a vested interest in the nomenclature associated with brain injury.

From my own perspective, it is vitally important to recognize the medical terminology associated with brain injuries. Common civilian words that are used to describe brain injuries and the effects of are not adequate when reading peer-review research studies. The N.C. Neuropsychiatry P.A. website illustrates the commitment of the researchers associated with that practice. Doctor Johnson has a long list of publication credits and Doctor Gaultieri's is even longer.

Researchers do not work in ivory towers. With the increasing religiosity inherent in the U.S.A. government decisions of who gets what funding as well as competition for research dollars, researchers by and large do have to possess a commitment to the subject of their research as well as to displaying verifiable results.

I encourage anyone reading this who is a medical consumer with a specific chronic condition or disorder to familiarize yourselve with medical terms and research protocols. Medicine continues to advance at a rapid pace. We can become our own best advocates if we are willing and able to gather information in order to communicate intelligently with the professional helpers on our medical teams.

Financial Disclosure: sapphoq has never been a patient at N.C. Neuropsychiatry P.A. located somewhere or other in North Carolina. Neither they nor Medscape paid sapphoq for the nice things she said about them. Thank-you.

sapphoq healing traumatic brain injury

traumatic brain injury

symptom scale

N.C. Neuropsychiatry P.A.

cognitive testing

Places

2007-10-06T12:01:00.000-04:00

That excitement of finding new places or re-finding old ones.
Pieces of me scattered in places I had never been.
I set off in April alone to find those pieces and indeed
they have been found. I knew. Never any doubt or question.

In my brain, I have snapshots of the many places I've been.
Places I have loved and places of tragedy or apathy.
Sacred places and places that have lost their holiness to me.
I have lived and loved and died many times over.

I have always been able to navigate through fairly well even those cities which I've visited after lapses of decades.
I remember how to get around neighborhoods and I can still see houses, apartments, stores, trees.
There are very few maps in my world; and very little need to ask strangers for directions.
An acute sense of direction combined with almost no sense of distance and a marked indifference to time.
Time leaks onto the fabric of the pages of my life,
muddying the words therein. I can still sing the words and I do.
I can read upsidedown with no problem.
I can write with two hands in various combinations of left, right, forward, backwards, rightsideup, upsidedown.
These things I have always taken for granted.
A long list of "Can't everyone?"

Just like the phone numbers from childhood and the addresses I can still recall.
First memory-- learning how to walk. And the revelation of a secret tryst inherent.
I was on the second floor of a house being encouraged by an old Italian man with missing fingers
to walk around the coffee table with no hands to steady me.
That old Italian man turned out to be the father of my step-father.
That is how old the affair of my mother and step-father was.
She was still married to my dad at the time.
From that memory, I understood how the two of them had met.
My mother had happened to hire an old Italian woman as a babysitter.

Odd. Almost everyone with a traumatic brain injury winds up with deficits in memory.
I am not one of those. I tested in the 99th percentile in both working and long-term.
My t.b.i.-er friends all tell me that they can't remember. I can't forget.

I did forget for a time who I was before my brain injury.
I could not describe my self pre-bonk.
And then random memories of my life began to return at random times.
Not anything I'd been counting on or even expected to happen.
More memories to add to an already bulging mental scrapbook.

Oh, I did forget how to cook.
The burnt pot of wilted herbs in a smoky kitchen told me so.
Cooking, like so many other things now, not automatic pilot.

I cannot take much for granted.
No. Having walked with death, I've been catapulted into life.
Vision like a permanent acid trip took some getting used to.
The world was too fast. I got used to my own pace, my own music.
I've "adjusted." Those who say otherwise know not of what they speak.
Yes, today I can describe my character traits before the accident.
Today, that doesn't feel important.

My mother told me when I was moving out, "You can never go home again."
I thought that meant she would not take me back in. I was too traumatized to care.
She had lost me through her abuse years before I was able to leave her house.

I understood a different meaning to not going home again many years later.
That people and places change, that my memories of those people and places
were expected to dull to inaccuracy, that returning does not render magical healing of heartbreak.
She was wrong.
So fundamentally wrong
in ways that I cannot explain and don't want to.

I have gone home again.
To places where I had never been before.

spike

spike manifesto

2007-09-20T18:17:00.000-04:00

I am spike. I am who I am and not who you want me to be. I was never good at being what you wanted me to be and now I am even worse at it. So I gave that up. I have my own way of being, my own dreams. I have my own timetable. What you think I should be able to do by now means nothing in my world. I am healing. I am experiencing a remarkable albeit slow recovery process. Nothing is automatic anymore. Being on manual overdrive is the way it is for me now. I march, skip, dance, and fly to the beat of my own steel drum band.

I am spike. I don't "look" disabled. Casual observers do not recognize my double vision in one eye or my physical pain or my expressive aphasia which I have learned to work around. Only doctors note the hyper-reflexia and the ocular-motor dysfunction, sleep apnea and sometimes the fatigue that plagues me. I take naps almost daily. When I don't, I fall more on uneven ground. I don't like falling. So I've learned to manage my energy and to take naps. I can be a citizen of the universe on those days when I am not screaming with fatigue. On days when I exist in a swirl of fatigue, I need solitude and rest. I am comfortable with my own company. This is my brain, my life. Not yours.

I am spike. I do not care much for instructions on standards or how to behave properly or things like that. I compare myself to myself, not to some impossible standard of normalcy. I know that there is much to be said for blending in, for fitting in when and where I am able to. The world does not owe me a living. I intend to work at something just as soon as I can. Try hard to remember that a traumatic brain injury diagnosis means no open machinery, period. That test for factory work that you are dieing to give me is not going to happen. I cannot do it. I am not equipped to work in a factory. Nor am I able to stand on my feet cashiering. Any ability I had to multi-task is dead. I have not given up on myself. I am my own best advocate, not you. You are someone who is being paid to offer a service. I don't engage in false displays of admiration and gratitude when you the professional "helper" finally do something that is in your job description. You don't get to live vicariously off my back any longer.

I am spike. Do not tell me that "mind matters" or show me your stupid green rubber bracelet. I am not placated by meaningless empty platitudes. Do not tell me that you "know" what or how I feel unless you have had to have three sets of six very long needles stuck into the back of your skull in order to ease the severe constant t.b.i.-induced headache. We are all alone in our own skins. You better hope and pray with all the fervor that you possess that you never have to deal with the things I've had to face in the past almost three years. You may not be able to get through it as well as I have.

I am spike. I cannot bend. My body doesn't allow it. When I am able to work on the garden or rip up carpeting, I have to do it my own way-- sitting. Do not criticize my lack of speed unless you are willing to offer your help. I am not emotionally invested in doing anything because you say I should or at your whim. This is the way of it. I am also not interested in hearing any wangst about "how difficult it is to live with [someone who has] a t.b.i." I don't complain loudly about how hard it is to live with a neuro-typical. Take your wangst to a support group for families and friends. I claim my right not to listen to it and not to get caught up in it. I have no time for bullshit.

I am spike. I am not interested in your pity or your displays of affection. I do not want to be swallowed in your vampiric bear hugs or have the life sucked out of me by your neediness. I have no energy to spare. I don't care for your crises or your drama. If you cannot relate to me friend to friend, I will reject your overtures. Anger is my truest friend. If you are afraid of my anger, chances are that any interconnection between us will be limited. If you are looking to get me "healed" of my anger or want to convert me to your religion or your way of being, save your breath. If you want to be my friend, you must remember that I am living on borrowed time. Those of us who have a nodding acquaintance with Death are forever changed. I offer no apologies for my attitude. I am not a t.b.i. I am spike. I can be a great friend. Or I can leave you in the dust as I and my dog go wandering off into the sunset happily.

I am spike.

sapphoq healing t.b.i.

Hints for Living

2007-09-12T08:30:00.000-04:00

I declare myself inspired by both
ranting dyke: http://ranting-dyke.insanejournal.com/
and tigresslilly: http://tigresslilly.insanejournal.com/ .
Kudos and thanks.

Hints for survival while employed by a human servitude agency:

1. Keep looking for another more saner job. Sanity of existence is one benefit that you will never hear about at your human servitude agency. Sanity of existence is priceless.

2. Don't go to office parties or dinners unless you wish to be accosted by the c.e.o who absolutely must dance with you while the d.j. is playing "It's Your Thang. Do what you want to do..." and experience him shaking his thang. Alcohol does not account for all random acts of bad behavior.

3. Remember that you have a life. The other workers do not know this. Keep it up front. Say no to overtime. If you never say no, then your yesses won't mean anything at all.

4. The people you work with and for are not your buddies. When push comes to shove, they will rat you out in order to gain brownie points. Anyone who says, "Trust no one here. Except for me." upon first introductions should be watched.

5. You are expendable. When you wind up in a car wreck, the human servitude agency will quickly forget that you too are human. Instead, they will call you and argue with you about meaningless paperwork when you are sleeping 20 hours a day because now you have a traumatic brain injury. They will also fax you a safety committee form to the place where your mate works. The form will ask, "How can this accident be avoided in the future?" Knowing that the answer is something akin to, "Ensure that all those who get stoned are picked up by the magic bus instead of being allowed behind the wheel of an automobile," give the paper to your lawyer so he can promptly lose it. When you are down and out, the human servitude agency will not watch your back. You are an insurance
liability now. All insurance companies wish you would go away or drop dead and so does your former employer.

Hints for getting over your loss of a career after a bad car wreck and traumatic brain injury:

1. The helping agency which is supposed to help you get gainful employment that you can do is also a human servitude agency. Remember that. Do not allow any organization or person to take control of your life and how it's gonna be. Advocate for you. There is a high probability that no one else there will.

2. Get rid of toxicity, especially toxic people wherever and whenever you can. They are a strain on the brain. Become involved in disability culture instead.

3. To badly paraphrase the folks at http://www.biausa.org/aboutbi.htm , life is different after a traumatic brain injury. It is still very much a life. Celebrate life.

4. Surround yourself with cute doctors. Fire all ugly docs and replace them with eye candy. When you don't feel well anyways, pretty helps immensely.

5. You are not expendable. You are sacred. Remember this always.

9/11 came and went. I woke up wanting to cry. It is six years later. I grieve for all of us having to live on this planet and trying to kill each other off.

9/08 came and went. 9/8 is my birthday but not the day I was born in a hospital. I have been free from active drug addiction [including the drug alcohol] since 9/8/80.

sapphoq healing t.b.i.

Excuses

2007-08-28T01:07:00.000-04:00

Excuses-- something that I think about quite a bit and guard against. Making excuses can be confused with that amotivational stuff that I fight with due to the t.b.i.

Do I make explanations for myself out in public? Usually, I consider things as "need to know info." The casual human being I meet in a store does not have to know that I have mild expressive aphasia. My talking is too soft but understandable even if I miss a word and find a similar one to stick in there instead. The jogger that appears down the street does not need to know that I might see him as having two heads, two necks, four arms, two trunks somehow connected to one waist like a morphed out hydra. [The double vision in one eye thing].

It is important for me to know when I am tired and to pace myself so my energy is more even.
And important for me to know when taking time for healing turns into a convenient sort of laziness and unwillingness to extend myself and get out there and job-hunt [again]. Maybe I can't do what I used to do. Maybe I can do something. Even if it is part-time, "something" is better than sitting home crying about my unlucky break and all of that. Taking risks is risky.
And yes, I have used my own t.b.i. as an excuse not to take risks because I am afraid.

The c-t scans and the m.r.i.s don't always show the extent of the damage. Mine showed the specific damage in the left frontal-temporal lobe but not the stretching of the axons that were part of the more diffuse damage. No way am I allowing radiation to be shot into my head [PET or SPECT scans] even if some insurance company would like to spend that kind of money.

The hyperreflexia and double vision in one eye,
the refusal of my eye muscles to move unless forced,
the inability of my eyes to work together or with my brain,
the borderline hearing loss [which has now cleared up],
the difficulty navigating on uneven ground,
the true photophobia,
the objective vertigo [not dizziness, not a balance problem--
the room slides to the left],
the pervasive lack of ability to multi-task;
all are things I live with daily.

I don't get to add those things up in an attempt to justify quitting. I don't get to whine about things being harder for me than the average person even if sometimes they might be.

I am alive and I shouldn't be. My car was rammed into a house at a high speed. I opened the one door that wasn't stuck and let myself out of that car. The last neurodoc didn't understand why I "walk so well" as he put it. My hyperreflexia is very high on the spastic scale. I'm glad he wasn't checking me out in the emergency room. Else I might not be walking today. I walked because no one told me that I shouldn't be able to.

I was lazy before my t.b.i. That didn't go away. I got another crack at life. Maybe I can do it a bit better this time. I hope so. I've got to try. And that means attempting to blend in whenever possible and being as productive as I can be in whatever form it takes. It means not blaming others for my problems. It means being able to see my self as a sacred human being, not as my symptoms or my labels. It means ignoring those who tell me that I am not able to. I can wallow in my self-pity or I can turn my excuses into determination to get back up again and get going. I have to keep striving. I am part of this society, a citizen of the world, and I intend to make my contributions to the society that I live in.

sapphoq healing tbi

A Reminder

2007-08-20T19:57:00.001-04:00

I had another t.b.i. reminder on Saturday when I could not remember how to connect to the library hotspot from my
laptop. Damn it. Some things I have always had and some things I haven't. Making the same mistake over and over
sucks. It was only after I was in bed to take a nap that I remembered which button I was supposed to click.

There are worse things in life to be sure.

Maybe during my next snit, I will be able to remember that.

sapphoq healing tbi

Don't put those books on a chair...

2007-08-04T00:25:00.001-04:00

Late afternoon husband and I went to a bookstore as we do almost every Friday. It is one of those bookstores with overstuffed chairs and couches distributed throughout so that way I don't have to stand in the aisles to read the books that I have no intention of buying. It also has a coffee bar and tables and cafe chairs.

Usually I go through the bookstore and meet husband at the cafe with my bunch of books and magazines to thumb through. Husband comes back with four books. We sit at the too small table. Husband goes up to get the drinks. I like rasberry-chocolate freezes and cherry-chocolate freezes. In the winter, I like hot chocolate with a shot of coffee in it. Husband likes caramel freezes. In the winter, he likes hot coffees. I usually snag an extra chair and pile the rejects on it. This has not been a problem in the more than ten years that I have been going to bookstores in this area.

A man in a brown suit made his way over to us. He stared at the 14 books and 5 magazines which I had gone through and which were in the reject pile on the chair. "It is against the rules to put the books on a chair," he told us seriously. "The chairs are for other customers to use."

"I don't see a crowd of customers waiting for that chair, but thanks for telling us that," I said. "Are you buying any of those books?" When I indicated that I wasn't, he said, "I have to put them back," and he walked off rather stiffly with an armful.

I don't mind following the rules if I know what they are and if they make some sort of sense. But that rule was (a). one I had never been confronted with before in my entire life of going to bookstores and (b). made no sense, especially given that there were no customers who required a chair. The bookstore was almost empty. There were four other customers in the cafe area; and three adolescent gamers sitting in the overstuffed chairs discussing the idea that the next president has to have both charisma and experience.

The man in the brown suit had a fancy tag by which I took that he was some sort of mucky-muck manager. When he told us he had to put the books back, I couldn't figure out why he was telling us that. We were done with them. It appears to be the habit that most people leave stacks of unwanted books around. If he hates his job that much, he can always go get hired by the human servitude agency where I used to work and find out what real aggravation is. Those were some of my thoughts. I refrained from saying things that I really wanted to say since I don't like cops being called and I do want to go back there again sometime.

Rather baffling it was.
spike

2007-07-17T18:02:00.000-04:00

The United State Army has released a teaching program which will aid soldiers and their families in recognizing the symptoms of both mTBI and post-traumatic stress disorder. 1.2 million soldiers in groups of 40 to a class will be put through the mandatory training. Both the Pentagon and the American Psychological Association claim that army mental health services are lacking in funding and staff. Teaching resources are available for download at the army site to soldiers and to Family Readiness Group Leaders, but not to [any other] civilians.

I am glad to see the Army [at last?] taking a pro-active approach to both head injury and p.t.s.d.

sapphoq healing t.b.i.

Something Different

2007-07-01T02:49:00.001-04:00

This is the results of a "brain test." Non-scientific but still fun. sapphoq healing t.b.i.

Your brain: 60% interpersonal, 160% visual, 40% verbal, and 140% mathematical!

Congratulations on being 400% smart! Actually, on my test, everyone is. The above score breaks down what kind of thinking you most enjoy doing. A score above 100% means you use that kind of thinking more than average, and a score below 100% means you use it less. It says nothing about how good you are at any one, just how interested you are in each, relatively. A substantial difference in scores between two people means, conclusively, that they are different kinds of thinkers.

Matching Summary: Each of us has different tastes. Still, I offer the following advice, which I think is obvious:

Don't date someone if your interpersonal percentages differ by more than 80%.
Don't be friends with someone if your verbal percentages differ by more than 100%.
Don't have sex with someone if their math percentage is over 200%.

Link: The 4-Variable IQ Test written by chriscoyne on OkCupid Free Online Dating, home of the The Dating Persona Test

Letters to My Self suicide, trigger

2007-06-29T14:23:00.000-04:00

Dear Heartlove,

Forgive me, if you will, my familiarity. I have known you for your whole life, although--like one in the deepest of comas-- you have consistently failed to recognize me. I am skin of your skin, blood of your blood, your breath, your everything. And you are mine.

You say you are endeavoring to fit your life together like a puzzle. Yet the puzzle has no pieces and nothing can be glued together. Stop that.

Here is something for you that you can do. Throw out those old puzzle boxes. Your life is an intricate weaving together of diverse elements into patterns. Patterns that defy the status quo. You are you.

You are not your labels, problems, disabilities. You are you and only you. There is no path for you to be on. You are a trailblazer who has been growing new legs. Get up now and walk on those legs, receiving the strength that is yours and yours alone. Then go out and share that strength. Only in the interconnection of all life will you ever find happiness.

Love Always,
All That Is

Dear "All That Is,"

What kind of stupid-ass name is that? I don't much like you. You and your talk about interconnections and weavings and patterns.

I have suicidal thoughts. They are my Plan B. Plan B is persistent and seductive in her constant whisperings. Plan B says,

"You won't find any jobs. Look, see there are no state jobs waiting for you in the wings. You are
scheduled to language away trying to catch up to the grindstone. There is poverty and degradation .
I'm a secret Plan B. You mustn't tell. Anyone."

You try living with Plan B, always there in the background with her twirly sheer skirts and flirty ways. It's not easy to be me and I may die. Still, it is a lot better than being you. You pompous assinine zipperhead. And by the way, I am no one's "heartlove."

In Total Apathy,
spike

Dear Heartlove,

"I always have options. I just don't always know what they are." Didn't you used to say that?

Love,
All That Is

Dear Pompous One,

Bugger off.

spike

Dear Plan B,

You are not a real Plan B. I name you Imposter. You are a collection of lies and old tapes. I repudiate you.

I may not know where I am going. I do know that I will make it through this.

You can bugger off too, along with that "All There Is" Pompous Asshole.

Basta,
spike

Excuses, excuses, excuses

2007-06-25T22:20:00.000-04:00

Anthony O'Toole told the court that an old head injury [not several pints of alcohol] caused him to have seizure activity which necessitated the calling of an ambulance and himself being intubated in order to maintain airflow. The stupid judge bought that story. The cop who arrested him for public intoxication apparently knew better.

To those of us who have a traumatic brain injury or any other disability or belong to any minority group-- the way to acquire equal protection under the law is through taking equal responsibility [i.e. the same responsibility that everyone else takes] for our bad behavior. We have choices and we can choose to lie about what we do or to face the consequences just like everybody else. Until we learn to quit using our otherness as an excuse, we have virtually no recourse in the dialogue for equal rights, period. Get a clue. Anything worth having is worth working for. If we want equal rights, then let's start taking equal responsibility.

Dude was drunk in public. Dude claims his seizures were from a head injury. That is possible. However, folks with traumatic brain injuries [even those without an addiction problem] should not drink or use street drugs at all. For a doctor not to know enough to access someone with a brain injury is negligence in my book. For a doctor not to know enough to advise that we should not drink or use street drugs at all is criminal.

Here's the link.

sapphoq healing tbi

A.B.C. Memories Meme

2007-06-04T14:16:00.000-04:00

A. "Does anyone here have an aardvark?..."
B. Batman bangs one summer, cut by my mother. I thought they rocked.
C. Celantano's, a store on Roosevelt Avenue.
D. I used to help Miss Davis in the school library. She had her left leg amputated cuz of cancer.
I was saddened by her death years later.
E. "Everything is beautiful in its' own way..."

F. I swam "like a fish" and I still do.
G. My friend Peggy H. took me to see the play "Grease" in New York City.
H. Life magazine did a spread on the play "Boys in the Band." It was my first exposure to
information on homosexual men and I was fascinated.
I. "i before e except after c."
J. Jesus-tripping. My friend Nancy T. and I drinking Moygan David wine and eating matzas
in a Bloomfield park.

K. I liked bat kites.
L. "L is for the way you look at me..."
M. The first time I saw a mouse in the kitchen, I stood on a chair.
N. The word 'nigger' was socially acceptable in the house I grew up with. I learned better in
seventh grade with the advent of two black classmates and I got to be close friends with
one of them. Thank-you Ann P!
O. I smoked oregano for a whole summer, thinking it was pot.

P. An aunt and uncle had a poodle named Pepe. He liked to do tricks.
Q. I was a founding member of the short-lived Queer Nation in Albany New York.
R. Rehabilitation assumes that I was habilitated in the first place. I wasn't.
S. "Wednesday is Prince Spaghetti Day." It was Ronzoni in our household though.
T. Another uncle was into model trains. He had a set-up in his basement with a miniature
village and everything.

U. From first through twelfth grade, I went to schools that required uniforms.
V. Nancy T. joined the Air Force and was stationed at Valdosta, Georgia.
W. My mother used to tell me, "The world doesn't revolve around you." Still, a modicum of
attention or interest from her directed my way would have been nice.
X. "X marks the spot." I was quite taken by the book "Treasure Island" and by all things pirate
when I was in grade school.
Y. I used to hate the color yellow.

Z. I remember watching zebras running in Africa on Mutual of Omaha's "Wild Kingdom."

spike: sapphoq healing t.b.i.

Cleaning 5/21/07

2007-05-21T21:26:00.000-04:00

Today I removed the garbage from my car.

Just a bag's worth, besides the returnable soda cans and the triple A tourbooks from my recent cross-country extravaganza.

There was an old newspaper clipping and several sheets of photocopy from another survivor of traumatic brain injury regarding the protocol he wanted to have put in place in New York State. While I admired his effort, I figured it has already been done. According to the protocol the docs are always right about what they decide to do. The cost-effectiveness of the un-treatment I had gotten from the emergency room could have had dire consequences for me.

I was alert after the accident, having extricated myself from the car. I knew that "Monday was Halloween so it must be November." I knew the year. I knew that a guy had smashed into my car but not that my car had been runned into a house. I knew that the ambulance took forty minutes to get to my accident. The two ambulances were engaged in the accident down the street. The guy had caused a head-on collision after my accident and everyone down that way had broken bones and were being flown to a nearby trauma center. I knew that my list of meds was in my wallet in my pocket. I knew I had one hell of a headache, which the nurse claimed was from the oxygen. And I was having trouble following directions as x-rays were being taken of everything but my head. I had hit my head repeatedly on the ceiling of my car. Also back-and-forth between airbag and headrest.

I wanted to sue the hospital but the lawyer was strangely uninterested in that.

Screw the protocol.

The aftercare instructions neglected to inform me that I might have a concussion, never mind an official mild traumatic brain injury [abbreviated as m.T.B.I.]. I was more than mildly pissed as I began to realize that life had been altered on some deep cellular level.

Getting back to the junk in my car: There were also bunches of candy wrapper. Mute testimony to part of my problem with not losing weight. Mostly chocolate bars.

Some receipts for vet bills for the oldest kitty, who two months later is still ailing. This is in spite of getting most of the polyps surgically removed from her left ear and several return trips. She is nine. I don't know how much longer she will last. She is not slated to die. But I can feel her slipping away from us. The operation was 400 bucks and then we got told that she also has stuff wrong with her spine. The visit after, the other vet said, "No, this is all from her ear problem and now she has an ear infection." I threw the receipts out. They were sticky from spilled soda.

A green cloth and some steering fluid got to stay up front. I should have put them in the emergency plastic bin in the trunk. Old cars and "be prepared for anything, anywhere, anytime" sort of thinking tend to go together like sandwiches and pickles. I was no boy scout but I have learned to keep extra stuff on hand. None of the extra stuff helped me this weekend. What helped this weekend was close proximity to my house.

Two blankets for the dog covering up the back seat. Bunches of stuffed animals for her-- mostly frogs-- and one bone. One of the frogs plays music. The dog has learned to activate that feature by mouthing or pawing the frog's tummy. Not necessarily something I welcome when driving but the dog likes to do it. A stuffed duck, a basket, a broken windshield scraper. The broom part for pushing snow away is gone but it is still useful. [I use a broom in the trunk for the snow and an old pickax for freeing the car from ice ruts]. An emergency cane and some old white sneakers "just in case." A vibrating back pillow stuffed under the driver's seat in case things begin hurting.

In the console are various pads for scribbling notes and things, a few maps, a pen. More maps in the glove box. Rocks in the ashtray, rocks on the floor. Rocks in the side panel. I like rocks. One of my obsessions. I have rocks all over the house. An extra pair of sun glasses for my rare but real photophobia. Irfan's syndrome I've heard it called, although the special eye doc has never called it that. Photophobia is a pain. That "sunlight dances in my eyes" of my journal references my strong intense painful experience with bright lights and glare these days.

The dog hair stays. The tracked in dirt stays. The fingerprints and muzzle prints stay. I am not cleaning the car out in order to sell it. Just pitching the garbage like so many broken things.

I like rooting through castoffs and unexpected finds in abandoned old partial foundations in the woods. Once I found a top to a blue tin coffee pot, a remnant. I use it to hold incense. It brings me pleasure. This treasure hunting, perusing antique shops and flea markets and thrift stores for "the find" that is going to change my life or at least my finances. Curbside raids during city-wide clean-up days have gifted me with a bureau, some cool old pictures in old frames. Other peoples' memories thrown out for me to find and cherish.

I am a reluctant pruner of my own memories and outgrown clothing. After my accident, I was immediately aware that I no longer understood the world and its' inner workings. I forgot random parts of my life. Those parts are slowing coming back as I continue to heal. Reluctant to lose them again, I write them down over at http://life.sapphoq.com for electronic prosperity. I had a sweater once that I hated. It was ugly. Pumpkin orange tweed, with green scotties. I packed it when I moved cross-country and then packed it again when I moved back. 3000 miles and I never wore it.

The neuropsych testing which all t.b.i. survivors should have revealed that my memory is even better than those without a brain injury. 99th percentile, the laid-back guy told me. I could remember 9 numbers [almost 10] and repeat them forwards and backwards. In real life that meant I could remember phone numbers. I didn't remember who called on any morning. I knew what I had for breakfast because most days I eat the same thing-- a nutrition bar that is supposed to give me energy. I'm still waiting for that one.

As I began to remember more and more of what I forgot, I began to respect the power of my memory. I am one of the two percent that cannot forget. Two percent of folks with a traumatic brain injury survive with intact short-term memory. My memory, in spite of those things that were inaccessible to me for a time, was in the category of brilliance. Block design too. I finished all of them, though for the last two I got a bit distracted by the p.a. outside the door announcing phone calls and all of that.

Before the accident, I didn't realize how powerful my memory for events and phone numbers was [and is still]. If I had been asked, I would have told you that my memory was a mess. It wasn't. I had too much to do is all. It took an accident for me to realize how intelligent I am. My brain is broken, yes. But not to be discarded. To be cherished. I have names for various medical ailments and body parts. My period is Matilda. My recurrent ulcer responds to Medusa. Medusa for the snake-like vise she grips my gut with. My "piles" [how's that for an old-fashioned word?] are Frick and Frack. My post-injury brain is Briella. Briella, like a beach in New Jersey in the summertime. Twisted a bit. Briella is brilliant sideways.

I have written some of these things before in other places. I will probably write them again. I have to keep writing it. And writing it. And writing it. Get it down. Track my healing with words. In my writing I force my words to sing. When I set out across country, I hoped to find some scattered pieces of my self in places I had never been. I did. Like me in my very first memory of learning how to walk, my haphazard soul retrieval picked up momentum across the miles. I am back now, more myself than I have been in years.

sapphoq healing t.b.i.

INSTITUTIONALIZATION VS. REHABILITATION 5/17/07

2007-05-17T21:22:00.000-04:00

In the state that is dieing to pay for almost everyone's health problems, it was interesting to note that some folks with brain injuries are crying "foul." The dirty little secret of nursing homes everywhere is that in the bid for dwindling funds, they have become repositories for folks with brain injuries [both acquired and traumatic], folks found to be mentally ill, folks unable to go home immediately after hospitalization but not sick enough to take up hospital beds and so forth. Anyone who has had direct experience with a loved one in a coma being shipped off to a nursing home [uh, thanks managed care and health mediphorical discintegrarganizations] is familiar with exactly what kind of "rehabilitation" such places offer. It is about time that folks with brain injuries stuck in nursing homes raise their voices in protest. Apparently, Massachusetts provides some services for some folks with t.b.i. but has ignored those folks with strokes and other acquired brain injuries by shutting them away in nursing homes.

Community living with natural supports is much preferred for any civil [civil= human being who is not a law-breaker, able to live in society without being a threat to that society] over institutionalization. Group homes are far down on the list of preferences, yet congregate living is still better than existence in a nursing home. The ideal is for folks with any disability to be able to choose where they will live and then given the means to utilize the [hopefully natural] supports needed to be successful. No doubt, most folks want to be in their own home surrounded by their loved ones. Some may wish to live in an apartment with or without a roommate or two. [N.B. Keeping one of us in a nursing home is far more expensive than allowing us to have a true say in our lives].

To those of you who talk about "special needs," we do not have "special needs." We have the same needs that you do. We have the same needs for self-determination, love, friendships, communications, mobility, sexual expression, productivity, societal roles, a space to call our own, and community participation that you have. Get a clue people. By calling our needs "special," you divorce yourselves from our humanity. Are you afraid that you will wind up like us? We are not contagious. [Wait. Maybe I am. Two of my friends came down with traumatic brain injury after I did]. I remember a woman boarding a bus in Phoenix. I was attempting to get my fare out to put it in the little fare grabbing machine which was new to me. She appeared to be afraid of my walking stick. Or maybe it was what the walking stick represented. Or maybe that somehow I was going to leap off of the bus and steal her bicycle on the rack outside in front of the bus. I dunno. Fear this. Fear a bunch of us united together in our anger and strength determined not to be locked away in nursing homes.

In this society, those of us who become disabled quickly find out what it is like to be a second-class citizen. Some surrender to despair, some ignore the situation, and the rest of us get angry and politically active through organizations like A.D.A.P.T. My sincere hope is that Massachusetts will choose to spend healthcare dollars on her disabled citizens stuck in nursing homes rather than continue to spend them on those pesky illegal aliens who are snapping up construction jobs [and cluttering up emergency rooms] all over the country.

sapphoq healing t.b.i.

Please read this.

2007-05-10T01:56:00.000-04:00

I am totally pissed off. I have been part of an email support group for three years. It is for folks who have survived traumatic brain injury. Now my posts to the group [not that there are very many lately] have been put on "moderated" status because of the e-mail address I use for the group ending in "resistant-witches.com." Resistant-witches.com is my ten dollar push button domain that I bought a few months ago in order to stand with a couple of friends who were being bullied on-line. [Consequently, I also became a target, but oh well].

The owner of the group had originally written to me about others in the t.b.i. group who were writing to her because of their concern/paranoia that I am a witch, and/or the e-mail addy itself. I didn't save that short letter because I never expected it to escalate into this foolishness.
Excerpts of our correspondence follow:

Hi ________ ,

...It was another part of your e-mail that concerned me...you mentioned something about "how many people have written [to you] regarding the witch thing."

Are you meaning the domain name where I get my e-mails now? [which was set up to help people who have been targeted by on-line bullies]. Or my personal beliefs? [which I am not asking for anyone's approval of]
Or something else?
I am not understanding why either should be a matter of concern.

I have been willing to set aside my differences in order to remain on the t.b.i. list by practicing
celebration of diversity to include those who are christian of varying political persuasions or
who are heterosexual or who have different views of medications and natural healing etc.

Please clarify this thing about witches so that way I may contribute to an orderly t.b.i. survivor list.
I have no need to hijack threats or to convert people [forbidden in my religion, actually]
and at the same time when an adult asks me on the list what is the "iq" part of "glbtiq"
I would like the freedom to answer the same without going into any sort of gross detail.

And I certainly am not willing to hide my spirituality just as I am not willing for anyone else to hide theirs.

At the same time, I understand what an undertaking running a list is-- especially of folks who do not necessarily have to be similar
to each other except for the circumstance that we happen to share the experience of living with a brain injury.

sincerely,
spike q.

***

Hi Spike,

...After a B.I. so many are "paranoid" when something doesn't "look" or "sound" right
and they get antsy and unsubscribe...go through the subscribing thing all over again....

...Now the "witches" thing is what I've had a few people refer to and they are
wondering why anyone who would be a "witch" would be on this list, and it makes
them paranoid. So, I was hoping that you'd keep one of your old email addresses
that doesn't have anything about "witches" in any part of it....we're trying to keep
some sort of "family" and "normalcy" on the list...

...For those like me who aren't aware of why you got this email addy, the
"resistant-witches" sounds more like a "cult" than anything else and I really
don't want to give anyone on the list any reason to "doubt" or "wonder" about the
T.B.I. group. It just "looks" like something they should worry about, you know?

...You may give some thought as to "why" people are bugging you...

...___________...

***

Thanks for explaining stuff to this brain, _______...

...There are a few folks on the list from time to time with alternative spirituality practices
and it is for those folks that I will not go back into the closet of assumption.
I am what I am. And yes, I am a witch, and not even of the wiccan variety.
Part of dealing with a traumatic brain injury involves learning or re-learning how to live
in the world among folks who do not believe or think the way we do now.

...There are non-christians who come down with this t.b.i. thing
and maybe "ask spike" might also serve [in some cases, for the less jittery]
just as well as explaining that resistant-witches is an e-mail provider
or even that not everyone on the list is a christian-- depending upon who
you are responding to...

...[I will continue to]...leave my personal spiritual practices
off-list unless there is a compelling reason to do otherwise
[and there never has been to date]....

...Peace to ya,
spike q.

***

Hi Spike!
I did some thinking about how to answer you...and then
decided to do a search for "resistant witches" because you
"said" it was an I.S.P. server....[dots hers] it was not. What I found was your web site
http://www.resistant-witches.com and found the "definition" of what you
practice...I also noticed that there was nothing about
"email bullies" , but only about witches and that you were tired of being quiet
(so to speak).

I also noticed that this web page was very "negative" and showed lots of
"anger." This is NOT what we are trying to pass on to the T.B.I. list either...
your...Yahoo profile page which is also very "expressive."...gays and all sorts of other religions
and polotics are being forced upon me, offensive clothing and such...
...but when a sex offender molests a child and is allowed to live close to
my neighborhood I don't like it...collecting welfare...I still have to fight for
my own rights. Fairness has nothing to do with it. As long as I live in
this country, I must abide by their rules...

...If you'll read the rules of the list once more, you'll see that "politics,
religion and sex" are NOT allowed...By letting you publically use this email name on this list you
are pushing your religious beliefs onto the list, whether you are talking about
it in an email or not. This is NOT allowed...

If my email address ended in JesusIsLord.com, I would be in violation of the
same rules. You don't have to "talk" about your beliefs because you've already
made a "statement" that you are a witch and that statement is shown in your
email address...

...I think if you thought
about the possibilities, you would understand why this can be trouble for a list
like this one and if you cared about being on the list or those on it, you would
say "ok, no problem."..."Why" give them a chance to bring up this subject on the list?

...Your posts will be moderated
at this time until you get your email address changed...following the rules....

_________

***

apparently i expressed myself wrongly.
resistant-witches is a domain which has e-mail addys attached to it.

i am to be judged because of an email addy.
i will not justify my beliefs or practices to you or to anyone.
nor will i justify the homepage that you found that is indeed
in response to internet bullies--
not "email bullies."
i have other avenues of support.
i am not defenseless.

furthermore, you know nothing of the situation at hand that
i have been dealing with.

choosing to exclude people whose email addys happen to end
in resistant-witches.com
or even in jesusislord.com is your perogative.

i am also tired of assumptions.
spike q.

I unsubbed from the group. Fuck it.

IMPULSIVITY AND DECISION-MAKING 5/6/07

2007-05-06T21:59:00.000-04:00

On my trip to various cities out west, I was directly confronted with my increased impulsivity courtesy of my traumatic brain injury. My first day in Chicago, I cursed out a store employee at the airport [under my breath] because he claimed not to have change "even if" I "bought something" which I was willing to do. I needed a single for the subway so I could get to the train station. I removed myself and reminded myself that he was doing his job and that was that. Mentally, I congratulated myself for exercising some restraint. I did get my change but not from him. I cursed out someone else somewheres else-- again under my breath-- but I remember neither the time nor the circumstance.

In Phoenix I had to admit that my impulsivity could lead to dangerous consequences. When I took one bus that turned before I needed it to and didn't allow the driver to complete an explanation [which she gave to another passenger a few stops later] that another bus was coming which would take me to my destination, I was left on a corner wondering if I should "walk" the remaining distance. Fortunately, I remembered something about calling and asking someone with sense about these things. So I called my friend with my [borrowed] cellphone and I learned that I should not walk through Papago Park on a hot day. So I waited for the bus. The first few days in the Sonoran Desert which was Phoenix Arizona, I noted that people carried water or Gatorade with them. It took me several days [and a very long walk to and from the zoo-- from and to a bus stop-- with no taxis in sight] for me to connect with the idea that I need to drink more fluids AND to also carry water or Gatorade with me.

In trying to keep up with the demands involved in re-learning how to utilize public transit, I put myself at risk for dehydration. I was "lucky" not to endure medical consequences for my poor decision-making combined with my impulsivity. By time I got to Sedona, I was carrying water with me almost everywhere I went. Sedona's weather was a tad cooler but hydration still a necessity. I also elected to take jeep tours rather than walk great distances to unfamiliar hiking trails.

This impulsivity is polar opposite to my pre-injury personality which involved cursing people out [not always under my breath] but did not involve risk-taking, especially with health concerns. I survived the Sonoran and learned a few things about my vulnerabilities and liabilities in the process. When the airplane taking me home was landing, I felt triumphant for managing to [mostly] take care of myself and [mostly] making good enough decisions over the past three weeks alone.

sapphoq healing t.b.i.

SHOULD FOLKS WITH T.B.I. OWN GUNS? 4/22/07

2007-04-22T02:31:00.001-04:00

Many of us with traumatic brain injuries wind up with an exacerbation of mental symptoms or with new ones, depending. For most of us, the deal is clinical depression-- Major Depression. For a few, it's schizophrenia. Furthermore, those of us who weren't addicted [to alcohol and/or to other drugs] before the t.b.i. run an increased risk of addiction afterwards. And those of us who have maintained some sort of recovery run an increased risk of relapse.

No, I don't own a gun and don't have access to any guns.
No, I don't think that gun ownership is a worthwhile goal for those of us with traumatic brain injuries to go after.

If there ever becomes a list of names of people who are forbidden to own guns, I will voluntarily ask that my name be put on it.

sapphoq healing tbi

SHOULD FOLKS WITH T.B.I. OWN GUNS? 4/22/07

2007-04-22T02:31:00.000-04:00

ENDO 4/14/07

2007-04-14T14:32:00.000-04:00

Two endocrinologists from Italy have noted a correlation between traumatic brain injury and the onset of hypopituitarism based on their literature review. Because of costs, they recommend referral to an endocrinologist on a case-by-case basis.

Post-concussion Syndrome was mentioned and the similarity between symptoms noted. Correlation does not prove causality however. The superficial sharing of symptoms on a list proves nothing.

I was not pleased by the authors' suggestion that folks in vegetative comas be thrown out and folks with mTBI be thrown out.

Why not throw everyone out except for those unfortunates with P.C.S. whose complaints are very often viewed with skepticism by the medical community on the whole and many practitioners of medicine individually?

Or why not do the research to further identify patients with traumatic brain injury who should be referred to an endocrinologist who is familiar with t.b.i.?

sapphoq healing t.b.i.

SLEEP DISORDERS AND mTBI 4/9/07

2007-04-09T10:34:00.000-04:00

Researchers in Israel have figured out what some of us mT.B.I.-ers have suspected: We have sleep disorders. [Some of us, anyways]. Duh.

This article should be photocopied and presented to every professional who doesn't follow-up on our complaints of sleepiness, fatigue, cognitive difficulties, or headaches.

I myself have delayed sleep-phase syndrome as part of my sleep apnea which is treated by c-pap machine.

sapphoq healing t.b.i.

N.B. the study was small-- 42 patients.

http://www.medscape.com/viewarticle/554741

BRAIN FOG 4/2/07

2007-04-02T00:36:00.000-04:00

While surfing around Medscape, I found a reference to this website about Post-Polio Sequelae:
http://postpolioinfo.com/PostPolio/
The open letter to physicians is worth reading.

Along the left-hand side are tabs, one of which will take you to the library.
The library hosts links to a variety of articles, some of which deal with similarities found between the fatigue that a Post-Polio Sequelae patient experiences and the fatigue associated with Chronic Fatigue Syndrome. Also mentioned in the articles is the brain fog which I have become very well-acquainted with in my own struggle with fibro courtesy of traumatic brain injury.

Although the articles are not specifically written about T.B.I., they are worth reading. Folks who have sleeping problems or fibro not associated with t.b.i. will also find a visit to the site worthwhile.

sapphoq healing tbi

BRAIN INJURY PLUS ADDICTIONS 3/30/07

2007-03-30T10:34:00.000-04:00

There's yet another criminal in the news-- this time in England-- using the brain injury defense for what he done. At least this time, William McHenry is admitting to stealing pocketbooks from library patrons AND getting help for a drinking problem. McHenry has been sober since February [hats off to him for that!] and lists his alcohol addiction as the motivation for stealing. It costs money to drink and that is that.

The development [or sometimes exacerbation] of addiction is common sequelae to a traumatic brain injury. McHenry got his from his house ceiling falling upon his head back in 2005. I wish him the best of luck as he is taking responsibility for what he done and is getting treatment for his alcoholic addiction.

People with traumatic brain injuries should not drink or use illicit drugs at all. Seems that the injury itself lends to addictive behaviors. I think as research is done in addictions treatment, it may very well dawn on someone that here is a population of underserved potential customers. Yes, folks with t.b.i. need education in things like addiction and doctors need education in things like t.b.i. and pain management.

Unfortunately, the classic classroom approach to addictions treatment is doomed for failure with t.b.i.-ers. So those who wish to run such programs will have to quit the cookie cutter approach if they want some stats showing that treatment can work.

Addictions treatment right now is rather hideous on the whole. The often touted un-success rate is an indictment against such treatment rather than an indication of any 'truth' to the current party line excuse "relapse is part of recovery." The idea that especially vulnerable populations-- such as t.b.i.-ers and those folks who have been labeled as mentally ill plus addicts-- are getting especially disaster-prone results out of addictions treatment should be serving as a wake-up call. Real people are dieing. We are not a bunch of statistics. With the money poured into the addictions treatment industry, it's about time that the industry be held accountable for some real results.

At any rate, I certainly wish William McHenry the very best in his endeavors to turn his life around.

sapphoq healing tbi

PLANNING 3/26/07

2007-03-26T13:00:00.000-04:00

I am going away cross-country. When planning an itinerary, I discovered that thinking ahead in a linear fashion [the way I used to] was no longer second nature. [Drat the damage to my executive functions.] Instead, my t.b.i.-related random chaotic style of doing things has infiltrated far beyond the boundaries of household organization. Yeah, that is what travel agents are for.

Unfortunately, the travel agent was doing a good job of imitating a nervous wreck during my three hour session with her. She was in a mad rush to get me out of there. At the end, she threw the itinerary on the desk and said, "This is it. If you sign this, there can be no changes." It appears that I have already posted about this singularly difficult encounter with the forces of order. Onward ho.

Upon getting everything home, I was informed that no, I did not have to be back for a commitment at the end of April. That commitment is at the end of May. I also realized that one of the connections that the harried travel agent had provided me with was of the "no way Hosea" variety-- as in, no way could I move fast enough for that. I took the weekend off to recuperate and to think about my options.

This morning I got on the phone to fix and amend and alter what I had to.
The upshot after spending a morning's worth of aggravation and phone calls is that I will be leaving a day earlier than I thought and coming back four days later. And renting a car for a day in order to make it to one spot which wasn't doable without spending most of a night in a train station waiting for a transfer.

Now I have several choices. I can continue to grieve the change in my thinking processes-- a total waste of time. I've done enough of that. Something in my inner core was permanently altered by my whacked out neurological landscape. I've known this since I got out of the car after the accident. I can accept it without having to wear the shackle of must stamp the seal of approval on it today. I can bitch and moan. That option is also rather unattractive. A constant diet of cognitive stew is boring. There are a few other options I'm sure that I am missing here. What I am putting my self-determination to is the idea of being happy that I am able to go on an extensive vacation. Because not everyone can.

sapphoq healing t.b.i.

sapphoq
executive function
frontal lobe damage

T.B.I AND DEAD PEOPLE 3/23/07

2007-03-23T11:31:00.000-04:00

I like mornings alright. It's something inside of me really. Something that resents change. Those between times where I shake myself from infested sleep, where the boundaries are blurred. Tapping into power. It is not something inside of me. It is I who doesn't care for the murky undefined borderlands of between.

The dog is instantly awake. She is my startling opposite. Frizzly energy to my melancholy. She explodes with happiness. My dog celebrates mornings for both of us. We are a community intertwined in Destiny herself, my dog and I. Without her, my fear would have rendered me sterile. Taken me down and drowned me in the onslaught of my atypical neurology.

It is my fear that chokes me. I will not be remembered. I will not have made enough of a difference. That is my fear. My dog knows this. She pushes me on and out into the sunlight. Blinking with pain and photophobia, I shield my eyes, always glad to return to the safety of home and dim lighting.

Home is where I hang my hat, hang the dog leash, stash my protein breakfast bars of power and frozen colored ices. Those bars of power are the breakfasts of champions.

Mrs. Eugenia Simpson gyrates onto the stage, clickety-clack, screaming for notice. It is a curse, this 99th percentile memory which survived through my broken brain. It is a curse, this second sight, third eye, and fourth dimension. "Eugenia," I address her, "I don't care what you think about my breakfast. I didn't know you thought about me after all of these years. You are dead you know. D-E-A-D dead." She throws my eighth grade health book at me. It opens to the how to eat correctly and what to eat when triangle. I laugh. She keeps dancing.

Some wise fool once defined nirvana as a day without dead people and traumatic brain injury. The ghosts keep floating through me as more memories filter in, like sunlight stinging my eyes. Rebuilding neurons and synapses yield dead ends of central nervous system tremor. Permanent. Another mark of progress. I have been marked beyond skin and sinew.

Community is the who around me, the us, dead people and all. I have neglected so much in my artificial quest for wholeness. I have forgotten the Other. The Other whose land we have stolen. I am also the Other. The interior landscapes of my brain has also been stolen, twisted beyond recognition, and left in a dumpster.

I am a second generation American. Briella is my second generation brain. Brilliant but sideways. Doing the two-step to Eugenia's celebratory dance. My dog nudges me. She dances and sings to me, "It's okay to let go of the gilded lily. It is not yours to pay. Come play with me in the wilderness." Somehow I think that didn't translate so well. I sigh and pick up the dog leash. We step out into the wilderness together.

sapphoq healing t.b.i.

BOB WOODRUFF TO SPEAK 3/18/07

2007-03-18T17:03:00.000-04:00

W-A.B.C. News Anchor Bob Woodruff and his wife Lee will be making the opening address at the Brain Injury Association of New York State 25th Annual Conference in Albany New York. They will be taking the stage after Michael Kaplan and Judy #1 have their say at 10:45 a.m. on Thursday June 7th. The two day conference as usual will be hosted at the Marriott on Wolf Road.

Those of you living in a news vacuum may not know that Bob Woodruff got a t.b.i. from an exploding bomb over in Iraq in January 2006. He and his wife Lee wrote a book about the ordeal. The book is called, "In an Instant."

The scoop among the t.b.i.-ers on e-groups was a bit of grumbling and remarking that his results are proof of what money can buy in terms of cognitive rehabilitation and dedicated professionals. So it was shortly after a docu aired on teevee. Certainly, money and terrific insurance policies and some fame does go farther in the world in terms of posh rehabs and all of that. What I don't want our community to forget is that there is that word motivation too. The human spirit surely rises above the envy of those of us who have been cast into the role of the have-nots by our subsequent t.b.i.-related disabilities. At least I want to believe that.

As for the Conference itself: The food at the Marriott is good, workshops good, pool outstanding. I've been to two of them-- I skipped last year's due to a scheduling conflict with a writing workshop that I co-facilitate with one of my editors-- and that is what I remember of them. Oh sure, the not so wonderful VESID folks from New York State put in their annual appearance. Aside from their noxious presence, it is a nice thing to meet up with other t.b.i.-ers who continue to strive for healing.

sapphoq healing t.b.i.

sapphoq
traumatic brain injury
BIANYS
VESID

SIGN, SIGN, EVERYWHERE'S A SIGN 3/14/07

2007-03-14T01:42:00.000-04:00

When I first came down with my traumatic brain injury, I became very self-focused out of necessity. Nothing was automatic anymore. I had to think constantly about what I was doing-- everyday things that we take for granted required excessive thinking. And so I navigated my way through a world that had suddenly transformed itself into an alien landscape. The familiar became strange. I didn't recognize my own self.
My taste in music changed. Later, when I was able to tolerate reading, I found that I no longer enjoyed the same kinds of books. New interests took over. I found that I could not assemble the old pieces of my old life. I had to reconstruct myself. And no one could do that for me.

It came to me that I had to force myself to think, even when not thinking would have been easier. I had to force myself to think about my future and what I wanted. I had to force myself to think about how to advocate for what I needed medically. In re-learning the patterns of living, I turned to the internet. I stumbled into a t.b.i. chatroom. In that chatroom, we spent many serious hours attempting to name the seven dwarves. I learned how to read t.b.i-typese. [None of us could spell worth a damn.] And with my new internet buddies, I learned how to laugh again.

The folks in the chatroom told me that I would have to be in charge of my own rehabilitation. I was getting vision therapy and physical therapy but no cognitive rehabilitation. Following the advice I was given in chat, I sought out various brain games on the internet. I became obsessed with Snood. And at a store, I found a large-screen hand-held Tetris. I also crocheted cotton washcloths and went to the gym as soon as I was able to. When I did get kicked out of cognitive art rehabilitation therapy months later, I continued the things I had been doing already. I discovered blogging and computer art. Now I am slowly learning how to animate. I have to think that through since I am unable to follow the directions as of yet.

Once or twice throughout my life, I have been accused of "thinking too much" as if that were a bad thing. Forcing myself to think has served me well in my own healing journey. Some days I sit and think about thinking. Like the sign says: Thinking really does tickle the brain cells.

sapphoq healing tbi

I AM A WITCH 3/9/07 language

2007-03-09T00:51:00.000-05:00

I am a witch.
I am a witch with blue eyes.
I am vicious, spiteful, and hateful.
I am a cunt, a hermit, a player.
I am a star shining in the night sky.
I was born on Sirius, I live on Earth, I will die Alone.
I am alone in my own skin.

I am my own destiny, my passage through the caverns of the Mother.
I talk too little, too much, I am neurologically fucked.
I am a thief by trade, but not a very good one.
The words in me scream,
"Witch! Witch! Witch!"
louder and louder through my brain.
Anger is my truest friend.

I embrace myself wholly and skate off
away into the glittering stars.
I am a witch and my name is spike.

sapphoq healing t.b.i.

KILLING THE KILLERS AND TREATING OUR VETS 3/5/07

2007-03-05T17:55:00.000-05:00

Rocky Mountain News reports that a prisoner with a traumatic brain injury [and P.T.S.D. who also hears voices] along with his cousin allegedly killed a third inmate back in 1999. William Sablan-- the prisoner with the t.b.i.-- was taped pulling out guts [from the sliced abdomen] of dead man Joey Estrella and showing them to a guard who was awaiting entry into the prison cell. William Sablan, who had arrived at the prison three days earlier and not given a psych exam at that time, also drank from a bottle which he said contained Estrella's blood and boasted loudly that he had killed Estrella. His clothing was covered with the blood of the murder victim.

Sablan's cousin Rudy Sablan was the third cellmate. He is also accused of the murder of Estrella. Both men face the death penalty if convicted. Estrella was choked with a headphone cord around his neck allegedly by Rudy Sablan. This was followed by the slitting of his throat with a prison-issued razor allegedly by William Sablan. It is the loss of blood from the throat wound that caused Estrella's death. Neuropsych Reuben Gur testified that William Sablan's brain injury limited his ability to plan the murder and to control his behavior.

Another inmate, Arthur Peck, testified that William Sablan and Joey Estrella were drinking and fighting in the cell on the evening of the murder. He also maintained that he saw Rudy Sablan choking Estrella with the headphone cord.

William Sablan's other criminal activities included burglary, assault, and the takeover of a fed pen. He has confessed to the crime, adding that it wasn't any big deal. The defense team is maintaining that "he couldn't help it."

Oh pluuu---ease. Dude did it. Dude said he did it. Dude had enough of a functioning brain to play a significant part in the planned takeover of a fed pen in Saipan. And now what? We are supposed to feel sorry for him. If dude is "unable" to control his behavior, dude is still a huge risk for doing it again. Furthermore, dude was drinking. Folks with t.b.i. are not supposed to drink even a little bit, whether in the penal system or not. radical sapphoq says: guy needs to fry.

Meanwhile, some real heroes are going without adequate treatment for traumatic brain injuries received in the blasted war over in Iran and all the rest of those places. The Veteran's Admin can boast all it wants to about assigning case managers to soldiers. Soldiers are being kicked out of the hospital early, being given inadequate directions to find caseworkers or out-patient clinics, being threatened with cutoff of treatment because their families didn't want them to be sleeping all the time so private treatment was sought and obtained, or being told they were "always slow" and are faking brain injuries for show.

I'd say our priorities are mixed up. Taxpayers are footing the astronomical bill for William Sablan's defense lawyer. Yet our soldiers are going without. Our soldiers deserve the absolute best state-of-the-art treatment for every single medical ailment they have in clean and beautiful surroundings for the rest of their lives, not just for two years after combat as currently allowed. Apparently Walter Reed Hospital has a mold problem. I'd say that is the very least of what is wrong with the system of health care for our returning vets. Let's hope that the new head of the hospital can get the hospital's act together a bit better.

radical sapphoq

http://www.rockymountainnews.com/drmn/local/article/0,1299,DRMN_15_5388591,00.html

http://www.postbulletin.com/newsmanager/templates/localnews_story.asp?z=10&a=285682

http://www.thekansascitychannel.com/news/11139919/detail.html

http://presszoom.com/story_124920.html

http://www.nytimes.com/2007/03/05/washington/05cnd-medical.html?hp

http://www.rockymountainnews.com/drmn/local/article/0,1299,DRMN_15_5352887,00.html

http://origin.denverpost.com/lacrosse/ci_5213142

http://www.rockymountainnews.com/drmn/local/article/0,1299,DRMN_15_5348167,00.html

http://www.denverpost.com/news/ci_5164805

http://www.kktv.com/home/headlines/5770311.html

http://www.shortnews.com/shownews.cfm?id=60193

HOSPITAL ADMISSIONS FOR TRAUMATIC BRAIN INJURY 3/3/07

2007-03-03T17:59:00.000-05:00

Caroline Cassels for Medscape Medical News reports on results of a study* which demonstrated that hospital admission rates for traumatic brain injuries [t.b.i.] increased from 2002 to 2003. The rates of hospitalization were 79/100,000 and 87.9/100,000 respectively. Motor vehicle accidents remained at the top with 32.1/100,000. Falls were a close second at 29.8/100,000. At third place, assaults were at 7.1/100,000. Rates of hospitalizations were highest for older men over the age of 75 and lowest for children.

64.9% of the patients were discharged home with no care or with unskilled assistance, 3.7% home with home health care, 9% to residential health-care facilities, and 7.7% to rehabs. 6.8% of in-patient hospital admissions died before discharge.

It is noted that the study's limitations were due to:
"Preadmission deaths that might have been TBI-related.
Persons treated and discharged from emergency departments
. Persons who sought care in outpatient clinics and physicians' offices.
Persons who did not seek medical care after injury." [end of direct quote]

*Authored by V.G. Coronado, MD, K.E. Thomas, and S.R. Kegler, PhD

sapphoq healing t.b.i.

http://www.medscape.com/viewarticle/553025

MMWR Morb Mortal Wkly Rep. 2007;56:167-170.

SHOULD I STAY OR SHOULD I GO 3/3/07

2007-03-03T17:21:00.000-05:00

Restless, that is me. Twitching, unable to be still in my own spirit.
Touching the things that give me connection, and yet a desire to
be away, away, away. Now I must seek out the counsel of those
who perhaps have logical thinking skills that I lack. I want to buy
a ticket for a month-long bustrip. See Amerika! Take pictures
with my digital camera through the windshield. Maybe find a
temp job in New Orleans. Then head West. California here I come.
Bring back some sand. Stop in Minnesota and small-town living.
Could I? Should I? When I was whole-- blank there. I cannot
even proceed with the question. No. Is there another way to
possess the freedom of my daydreaming without uprooting
my stability? Will I miss out? New Orleans the obsession.
I miss her bright shining like the sun. She rises out of the River
calling me home. My feet are itching. Or maybe a mere fungal
infection settling in calling for yellowed medicated powder.

sapphoq healing tbi

DISCONNECTED MEMORIES 2/28/07

2007-02-28T23:55:00.000-05:00

My memory has been tested and rated as rather superior in spite of my t.b.i. "Superior even to people without brain injuries," the nice neuropsych doc told me. "At the 99th percentile superior."

The test showed that I could recite 9 and almost 10 numbers forwards and backwards-- meaning I suppose that I remain wonderfully equipped to remember phone numbers. I was never told if that translates somehow into a magical ability to remember who called me this morning.

Remembering what I had for breakfast this morning is easy because I eat the same thing for breakfast every morning. Yet, some of my memories fall into the category of, "I remember that I remembered doing this. I no longer have the actual memory itself. But I do have the memory of remembering."

There are whole sections of my life that have been wiped. I have found those memories gradually seeping back in, like a steady leak of water. Drops of water that hit me at random intervals instead of the pot placed on the floor for that purpose. Those I record in one of the other blogs for posterity or hilarity.

I was with a good friend today who asked me if I remember her doing such-and-such. "Oh, you are the one who did that?" I replied. I sorted through and attached that particular disconnected memory to my friend. I remembered details of having been told about the such-and-such, but not who had done them. I filed her name away. Now there is a storage part of Briella* that contains the following: It was this here good friend who did the such-and-such that I remember having been told about. Another link in the mess of necklaces partially restored. Still no memory of the friend telling me about it. But a name to go with one of the such-and-suches floating around in the cerebral atmosphere.

Interior fragmented landscape not withstanding, I am not complaining. Briella* is rather cheeky and as I reach up mentally to give her a hug, she slaps my hand away and says in stern reproach: I don't like being fondled by strangers.

"Briella* it's me," I attempt to reassure her. She walks away muttering under her breath words that I dare not write for English class or in any blog.

sapphoq healing tbi

*Briella is my post-t.b.i. brain-- brilliant, just a bit sideways.

HEAD INJURY STUDY CALLED INTO QUESTION 2/24/07

2007-02-24T00:26:00.000-05:00

The practice of using Mannitol in high doses rather than in conventional doses for patients with brain injuries may not be based on studies after all. The leading doctor of the study, a neurologist by the name of Dr. Julian Cruz of Brazil, died in 2005. His claimed affiliation with the institution where the study was supposed to have occurred is in serious doubt. The institution-- the Federal University of Sao Paulo-- has stated that it doesn't know who he is and in fact never hired him. The remaining authors of the study refused to offer a retraction.

Three trials were supposedly conducted between 2001 and 2004. The results were published in peer-reviewed literature. The results purported that fatalities and long-term disabilities were lowered at six months post-injury in the group of patients which received the higher dose of mannitol.

The Cochrane Collaboration was unable to verify that the study had even occurred or where the patients had been gotten from. The death of Dr. Cruz and his lack of genuine affiliation with the institution listed on the study leaves the Cochrane Collaboration with no recourse. Thus, a serious quandary exists when making critical dosing decisions regarding mannitol when the drug is otherwise indicated in the treatment of t.b.i.

sapphoq healing tbi

http://www.medscape.com/viewarticle/552607
and British Medical Journal February 24, 2007;334:392-394.

surprise- I AM WHAT I AM 2/22/07

2007-02-22T20:10:00.000-05:00

Here is this week's blinkie. Some folks think of Popeye the Sailor Man when they hear or read this phrase. I think of La Cage aux Folles.

In life, not everyone wishes us well. If we are really honest within our selves, we don't wish everyone else well either. We do not have to love everyone today. Nathaniel Branden calls that "spiritual promiscuity" and I quite agree with him.

If your self-esteem has been bruised and battered, you might benefit from some of the books written by him. You may not agree with everything he says. [Trauma survivors in particular may disagree with some of his material]. You may not have the same politics or spiritual outlook. [He is a libertarian and an atheist]. You may not be of the same social class or sexual orientation [He is rich and definitely a total heterosexual].

I found Nathaniel Branden's work pre-t.b.i. And because I engage in practicing the six pillars of self-esteem, when really bad crap happens I don't give up.

Here's to hoping that none of us give up-- ever!

sapphoq healing tbi

*sapphoq healing tbi

Sometimes

Fatigue and Fog

I Got Rhythm

So Here's the Deal

Happy Solstice 2011

Sometimes

Seven Year Itch

Dear Neighbors

Sometimes

Jumping through hoops

This blog has moved

On the Edges of Space and Time

Three Out of Four

Chatter

Absence and Sorrow

On Politics and Swear Words

ReCreation for folks with t.b.i.

On Forgiveness

Growing Back

Unsticking

Taming My Inner Critic

Kicked to the Curb

VESID and teamwork

VESID, Kahrmann Workshops, and Hope

Uber-Failth Healing and so forth

The B1tch is Back

MEET THE NEW YEAR 1/2/09

Falling 12/25/08

VESID sucks

Driving, Executive Functions, and Stuff

Two Brain-Damaged People

The Rigging of Failure 8/23/08

VESID sucks comment

A Different Kind of Post 7/31/08

On T.B.I., Trolls, and Threats

Kristen Furseth-Mullaney's triumph

VESID sucks

A Shout-Out to Matt Evans of Kalamazoo

I Am What I Am-- no, not Popeye the Sailor Man

Stuff that annoys me, stuff I am happy about

Job Handler, Employment Consultant, Job Developer-- oh my

T.B.I. on SecondLife and on-going VESID stupidity

Nuttiness and Brain Injuries

Broken Things

Domestic Violence and Head Trauma

Making Work Work

Total Aggravation

Soliloquy 1/20/07

Drunken Principal Principles 1/12/07

Brain Injuries and P.T.S.D. 12/25/07

Circle Work with Insects

Job Ideas for spike q. poet

Four Years

A QUESTIONNAIRE

Places

spike manifesto

Hints for Living

Excuses

A Reminder

Don't put those books on a chair...

Something Different

Your brain: 60% interpersonal, 160% visual, 40% verbal, and 140% mathematical!

Letters to My Self *suicide, trigger*

Excuses, excuses, excuses

A.B.C. Memories Meme

Cleaning 5/21/07

INSTITUTIONALIZATION VS. REHABILITATION 5/17/07

Please read this.

IMPULSIVITY AND DECISION-MAKING 5/6/07

SHOULD FOLKS WITH T.B.I. OWN GUNS? 4/22/07

SHOULD FOLKS WITH T.B.I. OWN GUNS? 4/22/07

ENDO 4/14/07

SLEEP DISORDERS AND mTBI 4/9/07

BRAIN FOG 4/2/07

BRAIN INJURY PLUS ADDICTIONS 3/30/07

PLANNING 3/26/07

T.B.I AND DEAD PEOPLE 3/23/07

BOB WOODRUFF TO SPEAK 3/18/07

SIGN, SIGN, EVERYWHERE'S A SIGN 3/14/07

Letters to My Self suicide, trigger

I AM A WITCH 3/9/07 language