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Traumatic Brain Injury
A Concussion Diagnosis Is Impossible to Understand
Grappling with the reality of a concussion diagnosis.
Posted June 15, 2018
Receiving a diagnosis of concussion doesn't prepare you for how much your life will change; not just your own life, but the lives of the people around you as they grapple with the new person that's suddenly replaced the one that they had loved for many years. Going to rehab, understanding the diagnosis, doing the homework, trying to perceive where the brain injury and recovery will take you, consumes the mind and life of the injured person. They cannot help the people around them cope with the changes. I wrote Concussion Is Brain Injury: Treating the Neurons and Me to share what the diagnosis really means and how to repair the injured brain. The early years are in a sense the toughest yet the easiest because you don't know what lies ahead, only the present moment. An excerpt:
My OT suggested journaling to help me sleep better, I wrote on the lines below my last entry from October 2000. My husband had walked out of our marriage but not our house that month, saying, “You oughta know why.” Crisis has a habit of disrupting things. My hand, weak under the command of my brain, gripped my pen. It was mid-January 2001. I didn’t notice that the next day was the first anniversary of the car crash. Instead the meeting the day before with the marriage counsellor, who was not counselling our marriage but the separation Mistral had demanded, filled my memory as I wrote: My last entry became the last because after I wrote that…I kept on writing, my aching fingers producing the words deep from within my subconscious while my mind read what I was thinking and feeling.
The day before, he had left our session, saying, “I’m going to the airport and will be back next week.” He would not say where he was going.
I sobbed into the phone as I laid out the news to my pastor. The next day, I felt flat as I told my OT. It was like death had crept in. The day after, I smiled to my pastor and talked about my husband’s walkout as if I was talking about a fantastic new play I had just seen.
“You’re serene,” my pastor noted. My eyebrows almost popped off. Me? Serene? But yes, my anger and irritation were almost gone. I felt fine. I could smile. I could laugh. My psychologist had taught me how to touch the peace deep within me. It was saving my sanity.
Or my brain injury was.
Tick. Tick. Tick.
I was making reading progress. I had begun with only five minutes per page of reading, and now I was reading articles in a journal! I picked up the journal and flipped to the article on tap. I laid out my notebook and pen and began to read. I wasn't sure how well I was retaining the information, but I was following my OT’s suggestions. I was taking copious notes: read a point, write it down…except I couldn’t remember the point. I read it again and wrote down another word about it. Oh, it’s gone. Read it again. Ah, the point was there on the page, I was fired up to see as I watched my hand weakening from the effort of writing down the rest of the point. I moved on to the next sentence. This was working. I was following my OT’s instructions, and I was reading! With relief, I heard my timer ding.
Tick. Tick. Tick.
Infection settled into my nose and crept into my sinuses and dripped into my lungs, turning me OCD-like with washing my hands over and over in my forgetfulness. I learned to fear colds. I hadn’t had a puffer for asthma in years. I dug out my Flonase for my seasonal spring allergies. Later, my GP told me I had traumatic rhinitis.
Tick. Tick. Tick.
One day, Glenda had gently spoken to me about positive talk. She related that it was amazing how the corporate environment changed when people were banned from making negative statements. I listened, straining my brain to grasp what she was saying, to absorb her point that my talk was negative: the pain, the fatigue, my husband leaving, feeling unable to cope with taking on a tenant like he wanted me to, the insurance company denying another treatment plan, and the rehab homework and my hopes for it working. Her words echoed what others had said. My brain injury and seatbelt injuries had eaten up my life. There was no room for work. Energy drained out of my cheeks, and my body grew heavy as I struggled to shut my mouth against mentioning to her whatever sensation or thought or errant feeling popped into my consciousness to comply with what they all wanted to hear. It was a losing battle. I needed to talk out what I didn’t understand. And I didn’t understand this injury of the brain.
Tick. Tick. Tick.
Early in March 2001, my psychologist sat me down to tell me gently that my brain had plateaued. This is my life. He said acceptance wasn’t giving up and that my brain would take its own time recovering from this bad injury. He suggested that it couldn’t respond to treatment at the moment, and we should see how I do on my own for the month. The news ricocheted through me. The sound and light show he provided was the only thing that kept my brain working. I prayed before each appointment with him that I would receive life in my brain and hoped it would last more than a few hours or days. I’d arrive feeling so dead inside, like my brain was battened down. And then he’d put the giant sunglasses-like screen with its LED lights in it over my eyes, fit the headphones over my head, and adjust the light intensity and sound volume to low because the least amount of stimulation aggravated my brain. I’d lie back in his zero-gravity chair and gradually, gradually, as colours wove themselves into patterns in my view, thoughts appeared into the empty cave of my mind. Ideas and ability to converse popped up. At first, after the lights went off, I’d feel so tired. So, so tired. I’d nap within the cocoon of the crowd on the subway yet unable to sleep. And then I’d come alive like a mummy from out of a tomb.
After my appointment, I steered my feet away from Yonge Street into the deserted streets beyond it so that I could sob into my scarf unseen. Black despair surrounded me like death veils as I walked with my drunken gait toward the road then lurched back to the middle of the sidewalk, unfeeling the increasing pain in my right leg, its muscles unable to relax and protesting against this unusually lengthy walk. I took so long to arrive home that my husband, the one who was leaving me, was waiting for me at the door, worried that something had happened to me. I cried into his chest the news, the last time I would be comforted with unconditional unhesitating arms.
Tick. Tick. Tick.
I forged on, committed to returning to Lifeliner [the book I had been in the midst of writing] in six weeks. The first week of March, my rehab team gently told me I was nuts and suggested I write a newsletter to everyone about my injury, where I was at, my goals, etc. It would force me to confront my reality and give people a clear picture of my situation. I agreed to do that and to take TRI’s ten-week stress management course. My stress was high. I coped well. But I was at 80 percent risk of sickness. I blinked at that tiny piece of information.
Copyright ©2017-2018 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.
