Brain injuries are called an invisible disease. You don’t see the effects of brain injury, and people being the kind beings they are tend to ignore minor frailties. We think if you have a brain injury you should be a drooling idiot, unable to dress yourself, so we don’t see the damage when someone is struggling with everything they have to appear “normal.” Brain Injury survivors don’t make it any easier, putting on a brave face, compensating for our deficits; we are accomplices in hiding brain injury. We are trying to keep going.
My injury hid from me. I didn’t see it but my personality changed a number of times, and probably still is changing. I realize my injury is invisible to others, which makes applying for disability, or asking for help, all the more difficult.
I have never been much for clothing, a few years ago a girlfriend commented about how I disrobed when I came home. As I remember, she was naked at the time; I have put up with a number of hypocritical girlfriends over the last few years. When I got out of the hospital, I was not comfortable naked and wore pajamas for the first time since childhood. It felt normal, and although I have returned to sleeping nude, I still cover myself when walking around the apartment. I’m sure my flatmate appreciates that. Possibly related, I have no desire to be intimate, I don’t even kiss Sam very often. It took a while for me to notice, it appears to be endocrine related, as I was once exceptionally passionate.
I am fairly certain I could speak a couple of languages. Not always fluently, when I visited my father in Mexico with my second wife, my Spanish was adequate, but I have never taken a lesson. Three years of French and I could follow and participate in a conversation. A short course in Russian and it was me, not the linguists, who published a guide to pronouncing Russian place names for my wing in the Air Force. A Rosetta Stone course and I could struggle through Flemish with my ex-wife’s family in Belgium. And of course I was eloquent and precise in English. Today, I don’t call my mother on the phone because I cannot maintain a conversation. I am uncomfortable meeting strangers because my speech is broken. I have moments when I speak clearly, but I never know how long they will last. I still fall into Flemish occasionally (and uncontrollably, subconsciously), but the others are fragments, words but not sentences. At one point I could not complete a vision test because I did not know what to call the letters. I was more comfortable using the phonetic alphabet, and then I slipped back into (and out of) the more common American English letters.
At one time I would wake up and watch the news (I can’t bear to watch now, with all the election hatred). Something would spark and I would write an article, polish it, provide links and images, and publish that day. My schedule has not allowed that since I went back to work in 2014, but I was still able to put a thousand eloquent words together on demand. Since the accident several minor issues have prevented prolific writing, at first I couldn’t move my arm and hand, I was typing with one finger. Then as my arm healed, my brain faded, my drives, the self-motivation which causes me to write, disappeared. This article has taken a week, and I’m pushing hard because the exercise is good therapy.
I never realized how exhausting simple thinking can be. I can recall multitasking quite easily, working in the field as a technician I kept two dozen unique machines in my head, and although I was unusual in remembering an incredible number of part numbers (I had figured out the pattern so they made sense, like another language), other technicians handled as many machines. Today, I do puzzles that would bore my grandchildren and I get a headache. At today’s conference of the Brain Injury Alliance I had to leave early, and won’t be moving for the remainder of the day. I cannot commit myself to more than one task at a time, “multi-tasking” means getting both the garbage and the recycling out on the same day, and having leftovers for dinner.
Some things are intermittent. I had good practice dealing with intermediate afflictions over the last thirty years of Multiple Sclerosis. I can “pass” as unimpaired, I don’t often fall to the ground, and typically keep up my sense of humor. My life is mostly free of stress, so I can prepare myself for outings. I will be attending a Halloween party at the end of the month, and I am already panicking. I am thinking the best idea is to tell people I have had too much to drink, and not touch a drop.
One of the intermittent things is my memory. I can’t remember if Biogen is delivering my Tecfidera next week or if I missed it last week, but I can remember a campaign ad for Lyndon Johnson which only aired once in 1964. Okay, that ad is infamous but I remember seeing it air, as opposed to seeing it discussed. There are quite a few things in my life that now seem incredible, some I can verify, others I cannot. Were it not for the ones I can verify, I would simply discount everything; now I question everything. This results in a good deal of confusion and hesitancy, and requires an enormous amount of energy. I am tired constantly, but a spark still exists which tells me to keep going, to push through. Bad spark, I drive myself into the ground when I should just take a break and rejuvenate. One thing a speaker at the conference said struck me, she had been a police officer and was able to talk about what she was wearing at the time of her injury; like me she has no memory of the days surrounding the injury. She rebuilt the scene from reports and protocol, it was a cold day so she would have been wearing certain items, her uniform consisted of certain items, she has read the reports of the incident. You might think she remembers it to hear her tell the story, but I recognized the crutches I use, “according to reports,” “I have been told,” “standard protocol required.”
I am getting better at admitting “I don’t remember,” I can recall, but the explanation takes too long; kind of like when someone says “how are you?” and you say “Okay” even when you are not. The stories are there but I have no ties to them, the number of incredible stories causes me to hesitate; is it a memory or hallucination?
So I keep going. In the words of Robert Frost, “In three words I can sum up everything I’ve learned about life; it goes on.” Just because my injury is invisible does not mean I need to be.