“… they were not really afraid. They were just afraid of being afraid.”
― Malcolm Gladwell, David and Goliath: Underdogs, Misfits, and the Art of Battling Giants
People have asked me what it feels like. I have hesitated to answer, largely because I am only now coming to understand what has been going on inside my head. I have struggled to articulate how I ‘feel’ ever since the first neurologist asked me, “so what’s the problem?”
This is not a subject I wish to spend even a modicum of time thinking about so I shall endeavour to satisfy that question once and for all; if for no other reason than I will be able to send an email link the next time one of my friends asks, “So what do you mean by brain injury?”
I am not entirely sure why I am even writing this article. It reeks of self-indulgence and Oh someone please tell me I’m awesome passive-aggression. I loathe this tone of desperation.
I must confess, however, that I often have little direction as I start to write about a certain topic. Like some 360+ other articles on this blog, most of my thoughts develop as I think out loud, on paper. This one ended up being about my screwed-up brain. Nothing is out-of-bounds, so let’s pry a little. It is no accident that I spend so much of my professional life researching things like neurons and dendrites and dopamine and brain stuff. I regularly endeavour to analyze my own malady, just for kicks and giggles. Still, letting you watch the process is a disclosure I am not entirely comfortable with. I’ve edited this 29 times.
This is dedicated to all of you out there with concentration problems, short-term memory loss or impairment; and to those who just feel like they are going crazy every once in a while.
Apparently a certain percentage of the population, those who shall henceforth be known as my homies (I know, rad right?), have suffered from some sort of mental or physical malady which has fundamentally changed them as a person. I have mentioned before, albeit ever so briefly, that I had a Tonic-clonic seizure. We used to call it a “Grand mal”. Millions of people will have only one in their lifetime, or so I have been informed by a neurologist with an accent. Have more than one seizure and they want to label you an epileptic and scrutinize your driver’s license. If you google Tonic-clonic you will read that most seizures, if they are of average intensity and under 20 minutes in length, leave no lasting neurological effect. I was Jonesing for more than 20 minutes. A lot of nasty things happened in that time; I have written briefly of this in the past. I kicked a doctor in the head.
People who have chronic pain, for example, know what it is like when people forget you are broken. I look fine. I talk good enough to confuse a neurologist. I’ve always had a crappy short-term memory so what’s the big deal?
It is like hitting a memory wall, sometimes a few times a day. This must be what temporary amnesia feels like. Without any warning whatsoever I can completely drop a thought or memory. I know I had the memory, I just cannot seem to find it right now. We could be at coffee and I will forget who your wife is. I can completely forget that we met. You can ask me about an appointment we have arranged and I will not remember we talked. I have no memory of that huge martial arts event that I MC’d. I had no idea I was at the afterparty.
It’s not personal, and as much as it pains me to say it, not even an authentic personality flaw. My Fibromyalgia patient who sleeps 14 hours a day does not do this because she is inherently lazy, quite the reverse. She is not a flawed personality; she has an illness. Imagine, if only for a moment, walking into your ‘mind palace’ and all of a sudden the door is slammed in your face. You know something is wrong but for some reason you can’t remember. You cannot remember why you were supposed to remember what you cannot remember. Sometimes you have to think for a minute to recall where you are. That would suck…
I cannot remember what I need to remember. Usually I cannot remember why I was supposed to remember what I cannot remember. I can miss a period of time, or so they tell me. I’m in a bad remake of Memento. Am I chasing him or is he chasing me? If we wait 10 minutes the information may magically appear, although from which direction I have no idea. My first day back at work, after being in the hospital, I could not remember any of my clients. I do better with people I am close to, but I offer no guarantees. Things have vastly improved since that day, not so many years ago, but some scarring remains.
My wife tells me I’m “different”, and I’m pretty sure she doesn’t mean in a good way.
Like many of us, I have learned to cope. I use memory tricks like Linking and the Loci System that anyone can learn in 10 minutes. I keep a phone calendar with my wife. Friends who know me will remind me, gently, of what we discussed. Don’t get me wrong, I’m not an invalid and this does not happen all the time. I can go days, even weeks, with few issues. The freaky part is the lack of regularity, along with a few hundred other reasons.
A doctor offered to help me go on disability. I help people get on disability every week and I inherently knew that this was not to be a part of my journey, at least not unless things get much worse. I am too busy, too engaged. I help run an organization or two. I speak a lot. I consult. I have no desire to denigrate those who have had to go down that road; the truth is that my issue is simply not bad enough to warrant such an option. Many of my clients deal with problems that would stagger my imagination. My issue is not the kind of thing that keeps you home; it’s the kind of thing that can only scare the crap out of you if you let it.
This is a mind game, in every sense of the word. I am incredibly lucky to have grown up in a good home and so do not have some of the fear that others have had to feel. I never worried about being raped, or abandoned, or homeless. Many of my patients are the way they are because of horrific memories that have altered their lives. My family had cable. Unfortunately, however, that doesn’t mean I don’t struggle with insecurity or fear. Everyone is afraid, sometimes. Everyone wonders if people would like them if they really knew them. We all wanted to be popular. It’s very natural to be a little afraid of death, or dying, or disease, or the fact that a couple of times a week an asteroid screams by the earth, close enough to notice. We have ISIL and terrorism and relatives who are psychotic and the fear of getting old alone. Wondering if I’ll forget where I am, or even who I am, could probably keep a guy awake at night, if he let it. In counselling that is referred to as catastrophizing and we are neurologically hardwired to go there. You can quote that line about 85 or 90% of things you worry about don’t come true but most of us cannot stop our imaginations from running down dark streets where we should not tread.
Fear does funny things to a person. It can sneak up on you when you least expect it. You can believe you have it beaten, only to find out it was waiting for you in the places you least expected. I find it interesting, the ways we describe those places – cold, dark, stone, death, barren. Theologians call it “the dark night of the soul”. Dr. Seuss called it “the waiting place”. Scrooge confronts his grave on a pale winter day. Fear always seems to be in the snow or in the rain. Decay does not seem to like the sun.
Fear eats a person up, if we let it. It shows up in something you may have heard of called anxiety. Childhood trauma or neglect can plant the seeds of fear. Someone who didn’t know if dad or mom would come home sober, someone who knew what it meant to run and hide, that person learns fear. This may help to explain why so many trauma survivors are control freaks, by their own definition. When you are raised in a scary world that is beyond your control you grow up looking for ways to control your uncontrollable life. Some trauma survivors are hoarders and when you think about it on a psychological level, that makes a level of sense. It might be reasonable to conjecture that growing up in a world of violation and loss could lead to a desire to grab onto life and hold on. Other trauma survivors have difficulty finishing projects, or committing to monogamy, or struggle with addictions more than their friends at the PTA.
Some of us found fear as an adult, at the hands of another. There are many ways to be afraid of the dark.
I am learning to slow down when I get to the wall. There is an immanent fear of panic that must be immediately mediated and wrenched aside. Time to breathe, time to think. Recalibrate. Relax. Return. It’s not rocket science and I taught this to myself because I get paid to think about weird stuff. It doesn’t work all the time, I’m half an idiot and that’s the good half. Once again, there are things in our lives over which we have little control. It is up to me how I will respond.
We can do nothing to mitigate the events when someone we love dies, or our health hits the crapper, or we lose our job. I can wish upon a star all I want but that isn’t going to change what is inevitable. You may not want to accept the fact that you have a problem but it’s not a matter of if, it’s a matter of when. Reality seems to care not a tinker’s dam whether or not I am ready; I can only learn to surf.
It’s easy to be afraid. I’m a professional. I love what Gladwell says in David and Goliath, “Courage is not something that you already have that makes you brave when the tough times start. Courage is what you earn when you’ve been through the tough times and you discover they aren’t so tough after all.”
I sort of get that. Like most of us, I have spent most of my life trying to predict which way the wind will blow, only to find out that life rarely turns out the way we thought it should. No one is going to give us a magic pill so I may as well try to make the best of this and learn to leverage my stupidity so that I can get someone else to do all the heavy-lifting.