When I first came down with my traumatic brain injury, I didn't know I had it. The emergency room instructions didn't even mark the little box next to "possible concussion." After taking x-rays of everything but my head, I suppose there was very little reason to suspect that the oncoming headache might just be a result of my car being slammed into the side of a house at a high rate of speed. I went home with the message that all of this was temporary and that it would go away.
It didn't go away. After several false starts, an opthamologist muttered "post-head trauma" to his assistant and stalked out of the room. I had to look up the phrase on the internet. That was how I found out. It was a hell of a way to find out. I called the local RCIL.
After meeting with a disability advocate from the local RCIL and a consultation with a developmental optomotrist familiar with traumatic brain injury vision difficulties, I slowly began to navigate in the new world I found myself in. I had ocularmotor dysfunction and double vision in one eye and true photophobia. I got vision therapy. After nine months of vision therapy, I was able to tolerate the prism lenses that I need for my remaining vision problems. I had pain, severe pain. My twenty-four-hours-a-day-seven-days-a-week headaches eventually required three sets of nerve blocks [read: long needles injected into the back of my skull] to kill them off. A traction table and pool therapy mollified my back and neck pain. My worsening major depression [a common scenerio with tbi survivors with left frontal-temporal lobe injuries] got treated with the wonders of modern pharmacology. I had testing which demonstrated to some of the professionals involved what I already knew to be true, even if I didn't know the words. Any ability to multi-task-- except for driving a car-- was dead and not coming back.
And I fought. I argued with my husband, the doctors, the lawyer, the lawyer's assistant, VESID [OVR in other places], a bill collector [I refused to pay the $50 co-pay for the emergency room whose personnel forgot about my head], my former employers, a cognitive art therapist who allegedly might have gotten her phd from Pacific Western University, and insurance companies.
Early on, I stumbled into a traumatic brain injury survivors' chatroom on the internet. We spent quite a bit of time trying to remember the names of the seven dwarves. Some of my chat buddies told me that I would have to be in charge of my own rehab. That prospect was initially terrifying to me.
As time went on and no cognitive rehabilitation was forthcoming, I slowly took up the responsibility of my own rehabilitation. It was after all still my life. My life had been rudely interrupted; I no longer recognized my self; I'd had some personality changes that rocked my world. Yet it was MY life.
The folks in the chatroom directed me to free cognitive re-training exercises available over the internet, to an e-group of traumatic brain injury survivors where I went from fractured posts with no capitalizations and tbi-typese to caps, grammar, and proper spelling, and to readings about the long-term effects of mTBI. I became willing to explore.
In short order I learned how to WYSIWYG myself some simple websites, create links, cut and paste, download drivers and upload pictures, and fix some of the things my incessant button-pushing had done to the computer. I also started volunteer work at a local museum once a week for three hours, something I still do. I went to a couple of BIANYS conferences, visited some friends, and slowly began to clear up mentally.
After ten months of disagreeable disagreements with the VESID helping professionals, I quit. VESID is an agency whose website acknowledges to its employees that the customers are NOT in charge of their plans. Thus, I heard that my plan to return to school was unrealistic. And I was told that my best bet was to allow the nice job coaches from the agency down the road that also runs the sheltered workshop to "help" me. VESID was also insistent that I apply for Medicaid-- which I am not eligible for because of my husband's income-- so that way Medicaid would pay for cognitive rehabilitation for my tbi. I had needed the cognitive rehab months before but it wasn't forth-coming in spite of my best efforts. At that point, it wasn't needed. I had become fully in charge of my own rehabilitation and VESID was not helping me. VESID was hindering me. I needed that agency to get out of my way and I told them so.
I continued exploring the internet. I discovered blogging. One blog wasn't enough so I got several more. I developed friendships with some of my blogging buddies. I joined e-groups that weren't about traumatic brain injury. I found http://www.download.com and http://www.sourceforge.net . I discovered computer art and that I was good at it. I learned that Micro$oft was not the only option and I learned about open sourceware. I became interested in Linux. I decided that I wanted to work in the field of computer security.
Several times within this blog site and within others, I have told and re-told about my experiences with living with a traumatic brain injury. The telling is part of the healing. Today's message: I am in charge of my own rehabilitation. And so are some of you.
~sapphoq healing tbi
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