How my brain injury changed my definition of “hard”

My body has always been pretty healthy. My brain, not so much.

I can identify what I believe were at least two concussions growing up. Once I had the wind knocked out of me in a soccer practice in third grade and I felt woozy and lay on the grass for a while, trying to rise. The first had occurred when I was around six years old, running exuberantly down my aunt’s cement driveway. After face planting I discovered a giant goose egg on my forehead. Neither of these were ever diagnosed as brain injury, but I’m certain they weakened my brain function for the years that followed.

In eleventh grade a case of mononucleosis flattened me physically and mentally. On the verge of making it onto the varsity tennis team, I was forced to quit, much to my sorrow. I remember how foggy my brain was while I tried to study for chemistry. Sleep was of no use. I woke up just as exhausted in the morning as I was the night before. It took until my sophomore year in college for my energy to return to pre-mono levels.

From my teenage years on, I also faced increasingly difficult battles with depression and anxiety. By the time I emerged with my graduate degree at 25, my brain health was at one of its all-time lows. The internal mental struggle was second by second and minute by minute. I rarely had a moment of peace.

In spite of these nearly debilitating challenges, I worked and went to social events as I pleased. I drove long distances without needing to rest; I read for hours a day without a second thought. My reading comprehension was always exceptionally high, and I waded through complex academic texts. Many able-bodied people my age with similar educations consider those things a given, I imagine.

My entire life changed when I accidentally slammed my head into a wall in February 2015. I did not know all of the ways a malfunctioning brain could go wrong. To that point I had not yet experienced a fraction of them. Since then, I have been inching my way back to a level of functionality that, although somewhat impaired before the injury, was still much higher than my post-injury abilities.

After my injury, the sensory overload was acute. A regular amount of visual and auditory input caused sharp ringing in my ears, eye pain, and migraine headaches. My head hurt constantly, with stabbing pains. Random pains gripped various parts of my body–my hands, my armpit, my neck, my back. My emotional regulation was completely out of control; I cried uncontrollably daily, multiple times a day and for hours. My cognitive function was much reduced. Whenever I would try to think in the complex ways my brain had been trained to work, my head pain would increase and my emotions would brim to the surface and overflow.

I bumped into things, drove far to the right side of whatever lane I was in. I could not recall words or the definitions of words, names of neighbors. I did not know what time it was. I could not sing on key. My body could not get more than three hours of sleep a night. Fatigue held me in a vice grip. I could not walk faster than a slow shuffle, whereas I had always been a very rapid walker. My family went to a play where a fake cannon went off, sending an unbearable ripple through my brain, and I screamed in pain all the way home and required helping arms to even walk into my house.

Writing, my passion and my profession, caused pain, and forced me to quit my job. Blessedly, I could still write, and at a very similar and high level thanks to a neural muscle memory. Creating prose was not much of a problem, although it was riddled with errors (any errors were more than I was used to since I had trained as an editor and had a very high level of error detection), and I was unsure if my syntax was correct just by reading it.

Poetry, my mother tongue, on the other hand, was very hard to create. I lost access to the metaphorical valences of language; I would hear everything literally. And I actually lost the ability to know what the antecedent referents of words in conversation were. If someone mentioned “this” or “that” in reference to something they had just been talking about, I had to ask what “that” meant. I could not trace the line of meaning back in my mind.

My injury knocked my reading comprehension down to less than a full sentence. I could not read the words and understand what they meant, nor could I remember what I had just read. My short-term memory was so destroyed that I would read a verse of scripture and it would be as though I had never read it.

Socializing was out of the question, since ambient noise jarred my brain and made it shut down. Aside from traveling to doctors’ appointments and therapy visits, I spent most waking moments in bed for more than a year. I could not easily prepare meals for myself and I had a host of new food sensitivities that could send me careening into a worse migraine. I could not organize my time or focus on a series of tasks. I experienced a waking nightmare wherein my internal experience of myself was not what I was accustomed to over the first 29 years of my life. This created emotional horror and despair I had never experienced. I did not know who I was; had no sense of ever being well in the future, and could barely remember who I had been before my injury. I could not perform my “self,” and my life ground to a halt.

Living with emotional impairments had been challenging; but I had never experienced the degree of cognitive, neuromuscular, proprioceptive, emotional, or other limitations that wove themselves throughout my experience. Various brain functions were impaired simultaneously, leaving me completely and profoundly disoriented. I cannot adequately communicate the level of difficulty of putting all of these back together. It’s not like one thing is wrong, but many things at once, leaving you lurching around on a tempest-tossed boat that is your body and brain, wondering when you will be able to find your footing. It’s the hardest, most excruciating thing I have ever done.

Being so painfully separated from my self and my performance of self for so long has left me with PTSD, wherein sometimes it feels like I am still back in those most terrible times. The emotional processing takes place in waves, and this is no doubt part of why I am writing this blog post today. The experience must be told over and over until the memories lose their sting and their power of control.

The complex interplay of balance, vision, memory, and executive functioning makes a linear recovery a distant dream. Because brain systems are intricately interconnected and rely upon one another to function properly themselves, wiring everything back together has taken 2 years and 9 months and counting. No doctor or therapist has been able to provide me with all the answers, although some have been much more helpful than others. I have spent hundreds of hours researching the brain to find treatments and learning to put myself back together again.

My progress has been slow, but I believe it will be lasting. Last week I read 50 to 70 pages a day for three days in a row without losing comprehension or experiencing head pain. That is a huge improvement. On most days I am able to get up and moving around my house. My normal walking speed has returned and I sleep 6 to 8 hours a night. My cognition and emotional regulation are still trying to work things out together, but it improves every week. My capacity to go places and do things I care about are growing all the time. These gains are the result of relentless effort and miraculous grace.

Thanks to this experience, I will never take what many people would consider to be normal brain function for granted ever again because I know just how hard it can be.

***

If you are experiencing recovery from brain injury yourself, please don’t give up. Because of the brain’s natural neuroplasticity, its ability to adapt to challenges, you will continue to improve. If you are a caretaker or a friend of someone with TBI, here is an article I wrote to help you know how to assist those with these challenges. It’s not easy for anyone involved, but I know we can do this together.

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