Thursday, December 25, 2008

Falling 12/25/08

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.

Wednesday, November 12, 2008

VESID sucks

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.

Monday, October 27, 2008

Driving, Executive Functions, and Stuff

Yeah, I've been gone for awhile.

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."


Tuesday, September 30, 2008

Two Brain-Damaged People

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

Saturday, August 23, 2008

The Rigging of Failure 8/23/08

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

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:

sapphoq healing t.b.i.

Thursday, July 31, 2008

A Different Kind of Post 7/31/08

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

Pink Floyd, Brain Damage

Ray Bolger, If I Only Had a Brain


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

Phil Alexander, Brain Glops Keep Fallin' From My Head

Neuroscience for Kids, Brain Songs (collected)


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

Malvina Reynolds, D.D.T. on My Brain

Green Day, Brain Stew

Pearl Jam, Brain of J

Justin Timberlake, Still On My Brain

System of a Down, Ego Brain

Bob Marley, Brain Washing

Eminem, Brain Damage

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

New Brain Soundtrack, Trouble in His Brain

Annihilator, Brain Dance

Deine Lakaien, Brain Fic

Pinky and The Brain, Theem Song

Paisley Brain Cell, Paisley Brain Storm

Jimi the Jet, Song About My Brain

Gene Vincent, Flea Brain

Blood for Blood, Evil in the Brain

sapphoq healing t.b.i. and having fun

Thursday, July 24, 2008

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

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:
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.,2542,t=cyberbully&i=40624,00.asp


Examples of cyberbullying.
Suggestions on handling cyberbullying.
A blog noting laws being passed in the United States.

Suggestions for parents.
Acknowledges that cyberbullying happens to adults too. Some simple advice.

Are you a cyberbully? Quiz.
Attention seekers from Bully-Online.
Cyberculture-- pretty cool stuff here.
Privacy from a cyber-business perspective.
Various links about cyberethics.
Identities, trolls, etc on usenet groups.
Search for copies of your pages on the web.
Archives of a site where trolls gathered proudly.
Writing: an excellent troll how to.
Usenet trolls.
More extensive classifications of trolls.

Griefers. [They are on Second Life also].
Classifications of flame warriors *the pictures are priceless.
Poem by Donna Williams.
Trolls on the Curezone forums [original aol article not on aol anymore.]
Study on trolls in a feminist forum.
Flaming, 1992.
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!

smurfs and bots

shrink the cyberbully game

Monday, July 07, 2008

Kristen Furseth-Mullaney's triumph

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.

Thursday, June 19, 2008

VESID sucks

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.

Friday, June 13, 2008

A Shout-Out to Matt Evans of Kalamazoo

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

Sunday, June 08, 2008

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

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 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.

Wednesday, May 28, 2008

Stuff that annoys me, stuff I am happy about

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.

Tuesday, May 13, 2008

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

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:
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.

Saturday, May 10, 2008

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

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:

or at the potentially less threatening:

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.

Thursday, February 28, 2008

Nuttiness and Brain Injuries

Over at (as well as at 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.

Monday, February 18, 2008

Broken Things


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.


"Are your dogs friendly?"

"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*


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

Saturday, February 16, 2008

Domestic Violence and Head Trauma

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

Wednesday, February 06, 2008

Making Work Work

"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.

Monday, January 21, 2008

Total Aggravation

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.