How Brain Injury Wrests Away Control

Source: geralt/Pixabay

One of the nice things about having my reading comprehension restored is that background research for my novels is much easier. I read relevant books quicker and glean far more information and nuance from them. But sometimes what I research to make my fiction believable also informs my brain injury-related writing. Currently, I’m reading Tyler Henry’s newest book Here & Hereafter as I flesh out how Heaven works for the second book in my Resurrection trilogy. Henry writes:

“Since we can’t undo traumatic events, the only control we have is what we do with it. The more acceptance we can establish over that which we cannot control, the closer to contentedness we’ll be….By knowing what we can’t control, we can put more energy into what we can.”

Variations of this advice appear in self-help books and on talk shows and is used in brain injury rehab. The serenity prayer reflects this concept. The problem is that brain injury takes away control over whatever part is damaged. For me, with a diffuse axonal injury, that covers the gamut from cognition to body function, from deep breathing to conversation to anger.

Deep breathing is one of the first methods you’re taught to de-stress. Once I started attending brain biofeedback, I finally saw on a computer screen how my deep breathing affected my heart. The clinicians exclaimed over my perfect deep breathing, yet it barely budged my low heart rate variability. Instead of synchronizing with my breathing, my heart rate looked like spiky waves that suddenly shot up or plunged down. This relaxation method didn’t work well for me because the part of my brain that controls the heart was damaged. Only the combination of gamma brainwave biofeedback and the concussion protocol of photobiomodulation therapy finally improved my heart rate variability and brought my heart rate down consistently into the double digits and even into the 60s.

We know swear words emerge after brain injury. They don't exist in the brain like the rest of our vocabulary; thus they’re less prone to injury. That may be why I went from being someone who rarely swore, and only then used the mildest of words, to f-bombing all over the place. That wasn’t some personality change. My speech-language pathologist tested me and found my vocabulary remained intact but my access was abnormally slow and low. Swearing, on the other hand, was instantly accessible; it was like swear words substituted for any word I couldn’t access and for when my brain didn’t pop out a verbo (a nonsense or wrong word). This substitution meant I didn’t stall for minutes while my brain retrieved the correct word. Neurostimulation treatment, including tDCS, which restored my conversational skills, gradually reduced it to mostly controllable, occasional use.

Emotions, affect, and anger can change dramatically after brain injury. Many of my health care professionals adhered to the idea that anger after injury was resolved through strategies and anger management. Luckily, one of my psychologists understood brain injury anger and that the injured person has no idea they’re about to explode until they do. The only strategy that works, he told me, was to have another person alert me when they spotted the signs because they'd be able to see it before I did (and probably recognize a pattern of situations that create irritation and brain injury anger). In alerting me, they could get me away from the cause before brain injury anger took over. But I was alone and didn’t have anyone to play that role for me. Fortunately, brain biofeedback began healing it.

Those are only three of many areas brain injury ripped out of my control.

Contentedness for me—and I believe for anyone with brain injury—didn’t come from accepting all of these things that brain injury had rendered uncontrollable. It’s no fun having your heart beat erratically in the triple digits for most of the day, resulting in shortness of breath. It’s no fun mastering a skill research had determined relaxes a person physiologically only for it to not work for you. It’s no fun suddenly starting to swear when your whole life you hadn’t, and worse, to not have access to your vocabulary. It’s no fun being subjected to brain injury anger and being blamed, judged, and labelled for it. But pursuing treatment to heal the injury, or as much of the damage as possible, gave me the possibility of contentedness.

When my heart rate variability began to improve and my heart rate dropped into the 90s, I felt like I had a chance. When my processing speed, response time, and cognition improved and I regained more and more access to my vocabulary, I regained confidence in my conversation. My swearing dropped. I’m not back to where I was, and I don’t have the absolute control I had prior to my brain injury, but it’s like night and day. When the irritation, like nails on chalkboard, and the brain injury anger pretty much vanished, I felt liberated and able to start thinking about my moral anger and other forms of anger like a non-injured person does. I have a chance to view non-brain injury anger, discover its cause, and regain control.

“We must all do our part to live in alignment with who we are and what we stand for.…through every hurdle there is an opportunity to learn, internalize, and grow.”

My concussion giving me diffuse axonal injury meant it was impossible to live in alignment with my true self. Realizing that brain injury took away control over so many aspects of myself, led me to put my energy into learning about and pursuing treatments that worked. Neurostimulation therapies transferred significant control from the injury back to me. I’m free to start learning about my true self—no longer just the injury—and growing again as a person.

Copyright ©2022 Shireen Anne Jeejeebhoy