The Wall

“… they were not really afraid. They were just afraid of being afraid.”
― Malcolm GladwellDavid 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 memento-okay-so-what-am-i-doing-im-chasing-this-guy-nope-hes-chasingchasing 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. worrying-twainMy 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.

Casual Friday – How Long Have You Been Alive?

Empire State BuildingTony Campolo tells a story about how he challenged his students at Eastern College by asking them, “how long have you been alive”? They responded by reciting their birthdays, almost without thinking. Then he turned to them and asked again, “how long have you really been alive”? He went on to tell of a time that as a child, he stood on the Empire State Building and for a few brief moments, as the wind whipped his hair and the panorama overwhelmed him, felt fully alive. Then he turned to his students again and said, “now, how long have you been alive?”

Some years ago I went skydiving with my friends Fergus and Wendy in Fort McMurray, Canada during an impending rain storm. It was one of those days when you could see the vistas of the horizon and watch the heavy grey clouds roll in like a blanket. It was undoubtedly not a pristine skydiving opportunity but we were anxious to get in a jump, despite our best interests. As we rose to meet the sky the clouds extended over us like a cotton canopy. We leveled out at approximately 6500 feet and flew just under the clouds. I climbed out of the door and held on to the top rim. The wind in my hair I watched the plane skim just under the unbroken cloud. On a whim I reached up and wiped my hand through the fluffy billows, splaying them behind me. For that moment, I was truly alive.

So much of life I have not lived really alive. Days meld into days without end, seasons come and go. It is easy to just exist but not really live. The older I get the more I understand that my life is so short. It’s very easy to live day after day like time doesn’t matter, wasting hours, even months doing nothing notable, nothing meaningful, taking people and situations for granted.

I had a pretty brutal car accident last year. I was in Saskatchewan, visiting friends and attending a wedding. I broke a few ribs and totalled one of best friend’s cars. Everything initially seemed to work out fine. It was a little later that I realized I was quite shaken by the experience and afraid to drive. I had to use some of the cheesy stuff I teach patients to work through it. Things are fine now but I was left with a pervading sense that I am mortal. Last month when I had a grand mal seizure I was again reminded that we are finite beings and need our lives count. Like you, I still have some things to do and want to make my life count for something.

I want to be awake and alive. I want to fan my had through a few more clouds.

If I close my eyes I can see myself clearly from a distance, standing in the doorway, the solid bank of clouds, looking up – then pushing my hand into the solid mass. There is joy on my face. Truly alive.

Casual Friday: Does Anybody Out There Know Who I Am?

English: Cover of Undead Fishtank album, for u...

Tony Campolo tells a story in one of his books about something that happened after World War II. There were more than 200 Frenchmen who returned to Paris suffering from amnesia. They had been in prison camps and were so psychologically devastated by their ordeal that they had lost the conscious awareness of who they were.

In most cases, their identities were quickly established, but after all that was done, there were still 32 men whose identities couldn’t be verified. The doctors who were treating them were convinced that their chances for recovery were slim unless they were connected with former friends and relatives and restored to their once-familiar settings.

Someone had an idea to help. They published photographs of the men on the front page of newspapers throughout the country, and gave a date and time when anyone having information about any of these amnesia victims could come to the Paris Opera House. Well, on the appointed day, a crowd gathered to view these war veterans who didn’t know who they were. In a dramatic moment, the first of the amnesia victims walked onto the stage of the darkened opera house, stood alone in the spotlight, and slowly turned completely around. Before the hushed audience, in a halting voice, he said to the crowd, “Does anybody out there know who I am?”

It is a profound question.

I mentioned on this blog that recently I had a Grand Mal seizure at work. Fortunately I work at a doctor’s office and two of the best doctors I have ever met were on the scene within seconds. At least that is what I was told. I don’t remember any of it. Apparently I also became physically violent at one point as well, although I wasn’t there to see it.

It is a scary thing to wake up on a gurney and not know what is happening. It is very similar to waking up from an operation with that foggy pseudo-understanding that something has happened and you should know what that is. You understand, on some level, that you shouldn’t be in an ambulance – it’s a work day. It gradually dawns on you that you don’t know where you are or for that matter, who you are.

I could not remember where I lived.

It is a bizarre thing to realize you do not know who you are.

Many of us spend our entire lives trying to find out who we are. We jump through hoops and do things hoping to be loved, only to find out that we have lost a sense of ourselves. We grew up believing we were going to be rock stars and multi-millionaires, at the very least healthy, wealthy and wise, but we aren’t, and we may not get there anytime soon. It is easy to build your identity on the wrong things, trying to impress the wrong people for the wrong reasons. It is no wonder than that so many of us have come to the conclusion that the real world is boring and life has little meaning unless we find it from within.

The older I get the more I realize that life does not hand you meaning, you have to grab it for yourself. The paltry drive to acquire more money and status is so entirely meaningless yet enticing. How many rock stars and celebrities have to kill themselves or end up in rehab before we as a people stop spending our lives wishing for something that does not heal our souls?

So who are you? As Billy Crystal says in the immortal Princess Bride, “Hey! Hello in there! Hey! What’s so important? Whatcha got here, that’s worth living for?”

 

And Therein, As The Bard Would Tell Us, Lies The Rub*

I had a Grand Mal Seizure (tonic-clonic) last week. Apparently 10% of people will have one in their lifetime. My neurologist was explaining this to me last week and flippantly commented, “So if there are ten people out in that waiting room, one of them will have a seizure.” My wife, not missing a beat, said, “So as long as Scott is in the room we should be ok.” I love her.

The seizure took place at the medical clinic where I work. I have been told that I smashed my head against the wall, tried to bite my good friend and doctor, attempted to spinning back-kick another doctor, developed a case of Turrets, and basically held the medical office hostage. There is some speculation that I stopped breathing at one point. I woke up on a gurney, then in the ambulance, than at the hospital. I have significant short-term memory loss and have no remembrance of the situation. Weird.

Every so often we are reminded that we are not immortal. A little over a year ago I had a major traffic accident on a prairie road in the middle of nowhere. Other than some broken ribs, I walked away unharmed. After that accident I spent some time reflecting on the fact that my life was spared because I turned left (into oncoming traffic) instead of the logical choice, right. I spent a few months practicing the techniques I teach others, and was able to glean some healthy insights.

People have asked me since if I learned anything from these experiences. I have. Coming out of the hospital, after two days in the overflow wing that I shared with three female senior citizens I learned that old women really snore, and do vile things to a bathroom if left unattended. I also learned that I have been taking time for granted and have become lazy. When I am tired it is far easier to watch television than do something productive. It is tempting to waste my life on things that don’t matter. I am a driven person, but can truly be lazy between dreams. The older I grow the easier it is to sit around, skip my martial arts classes, and sit around with a remote control in my hands. Because I have a bad knee it is a simple thing to find a pseudo-sensible reason for my lethargy. And the clock continues to tick.

These are lessons one would expect to learn from any near-death or feels-near-death experience. The world is replete with stories about how the accident survivor felt they had a fresh start, a new chance and opportunity. This is, it would seem, a natural and hopeful response to these things. What I didn’t expect was to lose my short-term memory. I didn’t expect to forget where I lived, where my son’s bedroom was, how to put a key in the lock, and virtually all the meaningful experiences I have had in the recent past. I cannot remember Thanksgiving three weeks ago. Apparently we went out to the lake the next day for a picnic. I could not remember how to check my email, how to Skype, how to do case notes at work. I had no idea how to edit this blog. I actually phoned Godaddy and had them walk me through it. The first morning back at work I had four clients I apparently knew well but could not, for the life of me, remember their names.

It all started when I woke up in the ambulance. I felt normal, clear, and wondered why I was so vigorously strapped to the gurney. They asked me the normal questions – name, address, did I know what happened… I got the first one right. I knew my name, why would you ask me something like that? My address, what is my address? Something felt wrong. It was as if I had a space in my head where my address was supposed to fit. It is hard to explain to someone who has never experienced it.

I am back at work today. It only took me thirty seconds to remember which key opened the front door. I watched my wife drive away (my license is suspended for thirty days) and then nonchalantly stood by the door. And the clock continued to click. It eventually came to me, all of a sudden, that it was the weird flower key that stuck out like a sore thumb. I got my inner office door opened in only two tries.

This is very frustrating. I still remember what I have learned, still can engage clients in counseling. In some ways I am more in tune with counseling than I ever have been. I feel like I am at the top of my game, until you hand me keys. I will not remember certain details, and will not know I do not know.

This is very hard on my ego. I get paid to be smart, to be present, insightful, intuitive, engaging. If i let myself dwell on this, it will be easy to become anxious, or depressed, and begin to panic. And therein, as the bard would tell us, lies the rub.*

I teach people everyday to control their emotions before they become controlled. I am an evangelist for CBT, REBT, DBT, psychoanalysis, etc. I believe with my whole heart that this stuff works. Of course it is one thing for me to believe this works for other people.

It is another thing altogether to believe this works for me.

“Physician heal thyself.”

*stolen from “Inside Man“.