HOW IT HAPPENED 3/24/06

3/24/06

Within a circle that is not a circle
In a space and time that are not
The deep of the forest holds a secret
Shining brightly beyond.

I am here because I can no longer tolerate the Lie that would strangle my soul. The Lie that says, "You are cursed if you dare to venture out onto paths unknown." The Lie that claims "This is the way." The Lie that shouts, "You must conform or die."

Traumatic Brain Injury: My traumatic brain injury came as a result of another car slamming my car into a house, leaving a hole in the foundation. I saw the house coming and I thought, "This is it. I'm going to be dead."
I do not remember actually hitting the house. I do remember my head. My head whipping back and forth and up and down. My head hit the car roof numerous times before smashing into another car and stopping.
I also remember concentrating on getting the shock to travel down to my feet, telling myself to stay loose. I did not break any bones.
Nick the old guy from the bait shop across the street heard the metallic grinding. He ran out of his back office yelling, "He didn't even fucking stop!" After slamming into my car, the other driver went careening off down the street where he hit a second car head-on. They all got the broken bones. I got the tbi.
I thought my car was going to be on fire. I did not know that the airbag going off would generate a puff of smoke. I got out. I was surprized to still be alive and I did not want to die burning up in my car.
The ambulance did not come. Finally, after three 9-1-1 calls, the emergency services realized that I was the first part of the accident. Nick went to the police station and yelled at the desk sargeant telling him that I needed help too.
The ambulance worker kept talking to me. All I wanted to do was sleep. I was sooo tired. She kept insisting that I talk back, stay awake, answer her questions. Once at the emergency room, everyone forgot that I had injured my head. X-rays were taken of my face, back, ribs. I was sent home to "rest" after two hours in the emergency room. The aftercare form did not even indicate that I might have a concussion. Touching my head hurt for four months afterwards.
After the emergency room, I went home to sleep. I slept almost constantly for two months, began telling my very old mother-in-law absolutely filthy jokes when I was awake, drank lots of coffee, and fought withsomeone from my [ex-] employer's human services whenever she called. She always managed to call when I was sleeping. She kept insisting that I go to THEIR doctor 34 miles away. I had no car. I could not drive. I could not see straight. I was barely coherent. She kept insisting that I fill out forms. I would send the forms to my lawyer. Filling out forms was very difficult for many months after the accident.
I could no longer read the letters on the teevee screen. I went to a regular eye doctor. He kept shining lights into my eyes [very painful!] and demanding that I follow his finger with my eyes only, not my head [impossible to this day]. At the end of it all he told me that I am near-sighted, told the assistant to write down "post head trauma" and he left the room. She left the room too. I had to get on the internet to find out what "post head trauma" meant. Turns out it was another word for tbi.
I called up the local Resource Center for Independent Living. The disabilitiy advocate there has his own tbi. He suggested I go see 'the special eye doctor.' ['The special eye doctor' was a developmental optometrist.] I did. There, I was treated with respect, allowed to ask all of my questions, and given eight months of vision therapy during the time when the insurance companies were still fighting over who would pay my medical bills. Eventually, I was able to tolerate prism lenses. They help my eyes to focus together. Vision originates in the brain. 80% of traumatic brain injury survivors have vision problems due to the brain injury itself. I was in a majority in that respect.
I also had twenty-four hour headaches-- three kinds. They were billed as tbi migraines. I had two sets of nerve blocks put in by a needle-sticking neurologist before the headaches loosened their grip. The pain doctor [anesthesiologist in private practice] sent me to pool therapy. That and the chiropractor's traction table and a tens unit soothed my many trigger points and body aches.
I got some neuropsych testing done, and a hearing test. I don't have the short-term memory problems that 98% of traumatic brain injury survivors have. Nor do I have the hearing loss or auditory problems that 20% of survivors have. I do have objective vertigo [I am not dizzy but the world spins to the left] due to my vision problems. And I do have a gap in my ability to multi-task that I did not have before. I was told that my multi-tasking ability was dead and that it was not coming back-- except for driving. I have also been told that my balance has now improved to "excellent" in spite of the vertigo; and that it is remarkable that I am able to walk as well as I do. My traumatic brain injury left me with hyperreflexia and a central nervous system tremor. I have some permanent disability due to my traumatic brain injury.
The neuropsychologist recommended a job coach through VESID [OVR or office of vocational rehab in other places]. That did not work out. It took months to get "accepted" by VESID. After that followed ten months of fighting over cognitive rehab. VESID was unwilling to help me unless I could work twenty hours a week. I suffer from enormous fatigue. That was [and to date still is] an impossibility. The VESID professionals wanted me to apply for medicaid in order to get cognitive rehab. I didn't. Our household income made me ineligible for medicaid in the first place. I did have one stint at cognitive rehab though. It was one of the last things the no-fault ["it ain't our fault so we ain't paying"] automobile insurance company paid for.
I went to "cognitive art therapy rehabilitation" and I found it to be anything but. The basic premise was excellent. I knew that creative expression could be healing and so I was willing to try it. The art therapist referred to the claims adjuster in a letter as the claims "approver." She made some other grammar mistakes in my records which I thought was odd. I could run the office computer better than either she or her assistant could. The final straw for me was her written evaluation about me. It contained several well-known cliches about tbi survivors. It was not me. I did tell her so. I would be nobody's textbook case.
By that time, I had had far enough of being pigeonholed into the tbi mode. The art therapist extradinaire was an alleged graduate of an alleged diploma mill. Her phD was hanging on the wall. I looked up her "school" on the web and that is how I found out. She was making money hand over fist off the backs of the tbi community.
I left. And I quit VESID. If they weren't going to help me, then they needed to get the fuck out of my way. I actively took charge of my own rehab. I continued the stuff I was doing on my own to help myself-- exercise, sleep, cognitive game sites on the internet, a tbi survivor e-list, a tbi chat room, a local tbi support group, two BIA-NYS [brain injury association--new york state] conventions, volunteer work, (r) tetris, coffee, and regular friends.
Recently I went to an ent and found myself signed up for a sleep study. I have been diagnosed with hypersomnia [that means I am over-tired or over-fatigued, depending upon who is doing the talking] and with moderate primary sleep apnea. I went for a c-pap machine calibration just last night. Very soon now, I will have my own c-pap machine and perhaps most of my fatigue will also loosen its stranglehold on my life, just as the headaches were forced to.
One thing I have grown weary off over the past few years is gangs of well-meaning people who feel obligated to tell me that "the brain re-wires." Yes, the brain can do some re-wiring after a tbi. The part that people don't realize is that the re-wiring job is like having a dirt road replace a superhighway. The wires do not all re-wire back to pre-tbi status. Actually, some of them fail to re-connect after re-generation. That is the explanation for the central nervous system tremor.
Every brain injury is different. My own brain injury took my life and tossed it around. I have a few permanent personality changes as well. It may not be the life I used to have and it may not be the life that I signed up for. It is still life. This is my life. My life is sacred because I am sacred. And so are all of you.


~Blessed be!
sapphoq