Living with an invisible brain injury is often suffocating and lonely. It sounds trite, but you won’t understand it unless you’ve dealt with one yourself.
I’m short of two decades since I woke up from a coma and yet memory nuisances are often dismissed. On more than one occasion, more than one person has told me to be grateful for life now that I have a second chance at it. I lived eight days in a coma. I can walk and I can think for myself.
Yes, yes, and yes. However, this is not to say that the neurological deficiencies present are not inhibiting in some way.
I learned that although most people mean well when they say, “Well at least you aren’t dead,” or “You should be grateful that you are alive,” these bandage words leave me unfilled and empty.
They dismiss the fact that I regressed, and although I made much progress since then, it does not mean that my brain is completely healed. I know it isn’t. I have a very difficult time speaking, often talking faster than my brain can keep up with. I know I also often ask questions that get lost on others. Sometimes I mix my words, say things backwards, or readily feel the words spewing out like a water filter.
I know this because there are numerous times when my mouth speaks faster than my brain can process and out come my words like child-like wonder. I once said during my brain fritz that my head was the shape of a letter D in describing the incredible detail of what people saw first in me. It was more of a prose question that someone asked a group of us, but my naivete said something or other about having a flat head and large side profile. It made sense to say that in my head, but a lot of people burst out laughing. I do this a lot and I often catch myself after the fact.
Or that one time I loudly exclaimed that I was growing simply one black whisker in the middle of my chin right after a week of consuming five hour energy drinks. Context was that the gym regulars and I were speaking on pre-workouts that tended to do their job. Laughter ensued.
I don’t know where that came from, in all honesty, and I don’t know how to stop it.
I do berate the fact that I am no longer the same. I am not dumb, but I don’t process information the same. My eyes are shifty. My arm gestures are all over the place. I probably scare my superiors as I zap them with direct eye contact merely to watch their mouth and eyes move. I do this to understand direction better.
I am constantly fighting with inner turmoil. I know everyone means well. Write stuff in my notes app on my phone for faster viewing, make sure you repeat “keys, wallet, phone” before you head out, I remind myself. I always try my best to stuff in ways that I can remember besides repetition because I can repeat a phrase 5 times correctly, but by the 6th time my eyes start dancing or I begin to move my body in restless movements if I don’t quickly write whatever down.
I make up a singsong chain of words to add to my cluttered mind. If and when that gets to be too much, I stick notes on my calendar and on my computer screen. I have a pile of sticky notes that lay on each other, and they often get thrown out as each task is tallied and completed. So many notes, so many useful reminders to eventually throw out.
For the most part, I too believed that my earlier progress was only going up from here, most especially when I willed my legs to stand upright while walking with a steel rolling walker. Even then, I felt like that assistance was a crutch. The last thing I wanted was to be seen as a child with a rolling walker to help steady my gait. When I mastered the ease of my legs going up and down, I was very hard on myself. Negative thoughts about “being normal again” plagued me. I was really determined to walk in time.
Everyone was fully confident in my healthy body. I am not sure if it’s the belief in myself or my method of dealing with prior negative treatment as a child, but I tended to view any helpful advice as whiplash. It lodged tightly into my already low self-esteem.
I can take criticism, but one thing that I tend to hold on to negatively is tone. Any inflection in someone’s voice hits me like a jolt. It is often not subtle, but I always try to prepare for the worst. I know that is the worst way to live life. It’s probably not the right way to live life, in all honesty. I think a little of my perfectionistic tendencies creates high expectations for myself by myself. I never want to do anything that will make me stray from any progress I need to make.
Sometimes I may seem a lot like the old me, but I am a new me. I tend to be a clucking hen and other times a selective mute. Those moments when I am searching for the right words leaves me frustrated and lonely.
Maybe, just maybe, I may just start getting tattoos to match the electrons moving around in my brain.
Stephen King once said, “I’m most afraid of losing my mind. You lose your identity, your sense of who you are, where you are.”
I had it bad, but not like others. I am not bedridden. I did not succumb to a vegetative state, depending on others. I do not suffer from chronic conditions like I hear from others that have also survived. I don’t have chronic back aches, I don’t suffer from diabetes. I have not lost the ability to feel either side of my appendages. I lived despite nurses and doctors telling me I would be a vegetable. I am awake, but I am not truly awake.
I lived. My old self died, and I often wonder if the old me will ever come back. I often wish I could replace the brain I have now with the brain I had then, because it feels like everyone has taken a jab at who I am now. “That’s an April thing to do,” they say. “You’re so stupid,” or “idiot,” or “stupid, dumb broad.”
That April died, and I often wonder if everyone is still waiting for the old me to come back. I often wish I could, but I didn’t even like myself then.
It’s a day-to-day process for me. It consumes me feverishly on some days more than others.
What is my purpose? I don’t have the slightest clue. In Larysa Smith’s account of her sister’s successes and then rapid decline soon after her coma, she writes, “[my sister’s] brain injury continues to evolve and manifest in new ways. She is simply living it.”
It’s not that I am fine with the rollercoaster ride that my brain trauma is putting me through, but I’ve submitted to the fact that every day my brain is pulling dendrites together, filling in the gaps with memories for better things to come.