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How Brain Injury Recovery Can Shatter You

When rehab and doctor assurances don't pan out, despair sets in.

Justus Menke/Pexels
Source: Justus Menke/Pexels

Twenty years and nine months after the car crash that injured my brain and destroyed my life, brain injury recovery continues.

My recovery began with hope yet dread at the words, "Wherever you're at in two years, there you'll remain." I’m appalled that doctors still give that advice. When you see the two years pass and spontaneous recovery slowing to a crawl — and you also realize that the injury is actually worsening — dread turns into creeping despair that claws at your rigorous adherence to rehab myths that strategies work. You watch your core self and dreams turn into ash. Such was the place I entered five years after the crash and before I found salvation. I recount that time, which began in January 2005, in my memoir Concussion Is Brain Injury: Treating the Neurons and Me:

Twelve months after I began, I flipped open Don’t Forgive Too Soon with dread. I read and reread and reread the first sentence of the last page. Suddenly my brain caught and absorbed the words. I understood. I read the next sentence, its words pinging off my forehead until finally my reading engine roared to life again. I came to the end of the paragraph and began to summarize it in my notebook.

I couldn’t recall the first sentence. My timer declared break time!

I deep-breathed for three minutes, letting my stomach rise and fall rhythmically, calming my fear and panic that after four years, I was having the same trouble reading as when first diagnosed. What did “turn the other cheek” mean again?

I resisted the urge to check and attempted the next paragraph. My forehead grew cold behind my skull as the familiar concentration headache crystallized. I’d forgotten to do my concentration exercise first. Again.

But did it really help? Was my reading worse? I had to admit that it made little difference. I still couldn’t recall what “turn the other cheek” meant to people two thousand years ago.

I forged to the end.

I stared at the back cover of Don’t Forgive Too Soon.

I cannot read. I don’t remember one single new concept and not even some old ones. My utter failure sank my mind into paralyzing anxiety.

I turned my back on reading.

I kept writing, practicing, practicing, for I had to get back to Lifeliner. I had made a commitment to so many people. How could I let them down? Besides, I couldn’t let go of my dream!

Tick. Tick. Tick.

Angst grew within me.

The dark cloud that obscured my perspective of the world, keeping me from being in the world, seemed to be a permanent part of me now. Trying to write a chapter of Lifeliner eluded me. But I needed to write. Pressure cooked and carbonized deep within me. I wanted to join the online community. Maybe I could write a blog to practice my writing and get this angst out of me.

But my lawyer warned that the defence would use it against me. “Every word you utter, every sentence you write can be turned around and made to sound different from what you intended.” He wasn’t too happy about my request.

“I can make it anonymous,” I said.

He thought about it. He assented but with conditions. I wasn't to write about health, the law, insurance companies, or myself.

OK, I could do that. I had set up a website for Lifeliner back in the 1990s. I didn’t know how to use it or design it anymore, but I had seen the Blogger platform. I wrote my first post on it. The obsidian block of angst vanished. Weightlessness lifted my soul in my dense fatigue. In the vast bad news of my life, I had a success!

I rose stiffly while I danced in my head. I couldn’t wait to tell Mum, to spread the joyous news! I had set up a blog. I had written a post. This was an achievement everyone could celebrate with me.

I posted every time that black angst began rebuilding itself. Some times I could read what I wrote to edit it, to make it better, to fix it to say what I really wanted to say. It was difficult. It took more energy to take in information (to read) than to express what was already in my head through my writing. Some times I couldn’t, and I'd tell myself, write and post, if you try to read it, it’ll take so long, you’ll never post it. Just write. But was anyone reading it? I learnt of a service that gathered blog stats, and I added it. Suddenly, there they were, my readers, identified by country and ISPs. I had ten!

I didn’t know any of them, but I had readers. And even better, people began to comment on my posts. They thought I was male, and I didn’t disabuse them. It wasn’t new for people to confuse my gender, and anyway, it would make it harder for the defence to find my blog. I tried to reciprocate by reading their blogs, pacing myself as my OT [Occupational Therapist] had taught me, to let their words process in my head until I understood, until a response effortfully emerged into my consciousness so that I could comment on their blogs.

On Canada’s birthday, Mum checked out my blog and liked my collage of old photographs.

Copyright ©2017-2021 Shireen Anne Jeejeebhoy.

References

Linn D., Linn S.F., & Linn, M. (1997). Don't Forgive Too Soon: Extending the Two Hands That Heal. Mahwah, NJ: Paulist Press.

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