Monday, December 28, 2009

Absence and Sorrow


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.

Saturday, November 14, 2009

On Politics and Swear Words

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.

Tuesday, October 20, 2009

ReCreation for folks with t.b.i.

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.

Tuesday, September 22, 2009

On Forgiveness

*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.

Monday, September 14, 2009

Growing Back

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.

Tuesday, September 08, 2009

Unsticking

"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.

Thursday, September 03, 2009

Taming My Inner Critic



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.

Thursday, July 16, 2009

Kicked to the Curb



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

Saturday, July 04, 2009

VESID and teamwork

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.

Tuesday, June 30, 2009

VESID, Kahrmann Workshops, and Hope

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.

Thursday, June 04, 2009

Uber-Failth Healing and so forth

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

Friday, May 15, 2009

The B1tch is Back

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

Friday, January 02, 2009

MEET THE NEW YEAR 1/2/09

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