“What do you wish was done differently after you brain injury?”
I was surprised to see myself type: “I wish I had a list of deficits, symptoms.”
Why has it taken me so long to make that connection?
The question came up in a survey about the aftermath of brain injury. I added to my response, “A list with examples and explanations.”
When I came home after the surgeries, I felt lost. I had no idea where to begin. I didn’t understand what had happened to me. I didn’t think to associate some of the symptoms with my brain injury. When grief filled me, I thought I wasn’t handling things adequately. When anxiety overwhelmed for no apparent reason, I thought I was going mad. I wondered whether my difficulties following conversations were because I wasn’t trying hard enough to focus. My “supposed” issues with my balance and “seizure-like” episodes, made me question myself—was being melodramatic?
A couple of months into my recovery, my neuropsychologist explained some of the symptoms, that they were indeed bona fide deficits related to my brain injury. My meltdowns were a consequence of issues processing sensory input—my brain now had difficulties keeping up with high volumes of sensory input. This deficit, named “sensory overload,” was common among brain injury survivor, though my version was more extreme than any he’d encountered among his other patients. He also told me that my “seizure-like” were real neurological events, not psychogenic seizures, or pseudo-seizures, as many neurologist label them—I wasn’t being melodramatic.
My issues with procrastination were in fact normal. He used the word “task-initiation.” I wasn’t just being lazy—indeed it wasn’t the same as procrastination. It felt different. It was as if there was a physical obstacle between me and the act of beginning a task. He even came up with a strategy to manage it, which works, sometimes.
His assurances came in bits and pieces over time. Each one calmed my fears and helped me cope with and compensate for my deficits. But progress was slow—I still occasionally wonder whether I’m over-dramatizing or malingering.
If only part of the discharge instructions included a manual, a list of issues I would face as I recovered. It would have been so much easier, especially if it had come with examples and explanations. I wouldn’t have suffered from as much anxiety and fear that I would always remain as I was, deficient. I would have found ways to manage deficits before my difficulties swamped me with self-doubt.
I did eventually learn that my ability to think sequentially was damaged, but it would improve. I hadn’t lost capacity, only facility—the brain power was still there, but the bloody brain had harmed my ability to access data. I was relieved when he assured me that my brain was in the process of healing and rewiring. In time, I learnt that I would never be as I was, but I was not less for my losses. In fact, I was more.
I discovered passion, for writing and teaching. I had more compassion and became more open to the world. As I took a crash course in learning to ask for and accept help, my social skills grew and with them my world became richer. I became more aware and self-aware.
I asked my neuropsychologist a lot of questions. I went through a lot of “Aha!” moments in his office.
When I spoke to other brain injury survivors, I discovered that many of them underwent similar difficulties, except that, unlike me, the vast majority weren’t relentless in searching for answers. And most gave in to the self-doubt, convinced that they were handling their new life inadequately.
When I first started writing my memoir about my recovery from brain injury, my motivation was to help friends and relations understand my issues. More importantly, I hoped to help brain injury survivors along their paths to recovery. I hoped that by reading my story, they would have the guidance that I lacked on my own journey.
In addition, in the hopes of helping students with brain injuries, a few years into my recovery, I wrote a pamphlet where I describing deficits that such students might be facing. Every deficit on the list was accompanied by an explanation, an example, and suggestions on how to accommodate it.
Despite the conscious purposes behind writing my book and the pamphlet, I failed the connection—I too would have benefited enormously from such a list.