Monday, September 3, 2012

As You Draw Near.

I've been wrestling with this post all morning, trying to sort it out in my head before I commit it to words. I like to have some kind of clarity before I start typing, but some days it just won't come.

As part of my job - working with kids who have behavioural issues -  I sometimes have to work with kids who have Asperger's Syndrome, which is sometimes also known as an Autism Spectrum Disorder. I like this latter name better, as it indicates that the severity of the disorder varies significantly from person to person. While folks on the spectrum all display similar symptoms - difficulty interpreting social cues, intense interest in a particular subject, a need to explicitly decipher situations that others intuitively understand, reliance on rules and structures, and considerable anxiety and anger when they are unable to figure out what is going on - some of them are all but incapacitated by the disorder, whereas some - like the kids we usually end up with - are quite social, can form and maintain friendships. These friendships usually occur in the computer room - Asperger's kids tend to love computer games, as those are worlds that are dependable - when they press a button, the gun will shoot, or their character will jump. If there's a bonus life behind a door today, it will be there again tomorrow. That's the kind of consistency that just doesn't occur in real life.

But I gotta say, the more I learn about Asperger's, the more I think that the spectrum isn't broad enough, that by drawing a defining line at one end of the spectrum folks are missing out on the chance to understand better the way all of our brains work. At the far end of the spectrum, with people who are social and communicate well and can get by, the distinction between those who have it and those who don't seems at best arbitrary and at worst false. Put bluntly, we all seem to have Asperger tendencies, and the diagnostic tests seem to only be a matter of measuring its severity rather than discovering its existence.

With this in mind, the techniques used to help folks manage Asperger's - mostly Cognitive Behavioural Therapy (CBT) - are probably techniques that would help most of us, in one way or another. Mostly CBT is just about taking charge of your thoughts, recognizing when you are thinking something damaging or false and working to, in a way, control those thoughts, then consequently alter the behaviour accompanying those thoughts.

And this is where I start to wonder about myself. When I first started dealing with this fatigue, and doctors started ruling things out left right and centre, it wasn't long before they started recommending I go see a sports psychologist. I resisted the idea at first, because I don't have a great history with psychologists - I have this tendency to turn my sessions into intellectual contests, chess games that I have to win, which probably isn't the point. I was also really fucking angry that they were suggesting that the problem was psychological rather than physical, that it was somehow within the nexus of my control. I kept going to different doctors, more niche specialists, kept ruling out increasingly esoteric options. Just last week, on the day that the photo above was taken, I was able to rule out any immune disorders, coeliac disease, and a whole assortment of cancers.

While this seems like a good thing, it still leaves a bunch of questions unanswered. The worst thing about this fatigue has been the uncertainty, of not knowing how or when it would crop up again. All I need is to know that if there's a bonus life behind a door today, it will be there tomorrow. Then I'd be able to put in place some training, some coping strategies, work around it. But because it comes and goes, because I'll be able to string together a few months of solid training before it recurs out of no where, this can't be the case. What I'm capable of doing changes from day to day. And occasionally that freaks me out. I can't figure out what's going on, and I get the anger and anxiety and fear.

Aww, hell, I still can't figure this out now. Last week at the track my body completely deserted me and I got rolled by a bunch of folks who usually ride B grade. I was pissed and frustrated and looking for answers. When I couldn't find any I started freaking the fuck out, thinking that the fatigue was back, that I'd need to take another six months off, that perhaps I should just give it away altogether. It didn't make any sense, and I couldn't figure it out. After pulling out of the last race I sat down and didn't move, didn't talk to anyone, didn't do anything, just sat and silently contemplated the end of everything. I was fucking ropeable. Eventually, though, folks started coming up to me. And I eventually started talking again. And they started talking to me. And somewhere, in the midst of that discussion, I started to recognize that I was thinking about things in way that was damaging or false, and in turn began to turn it around. At least a little bit. An hour after the race had finished - when the fatigue usually hits hardest - I was ok, still awake and talking. And the next day - the litmus test of this weird disorder - my body was alright. I even rode my bike over to the doctors. As the photo above shows, the sun was shining.

I still don't think this sickness is all in my head, but I also don't think that the way I think about it is separate from the way it feels. There's a false dichotomy for you. Like the Asperger's kid who freaks out when they can't figure out what is happening in the playground, I've been freaking out every time I can't figure out what's happening with my body. Perhaps it's the same thing. Perhaps I'm a little Asperger's too. And perhaps it's time for me to work on how I think about that.

1 comment:

Anonymous said...

I'm in the same boat as you - I was a cyclist, got up to B grade while I was 15, got sick and then exhausted, and have been dancing between specialists for the last 8 years. I'll have periods some where I have enough energy to survive; some where I have enough to train and race; some where I'm completely useless and can barely move.

I've been seeing a psychologist based out of Olympic Park Sports Med for the last four years, and some of the things I've done with her have helped me manage the fatigue, and have given me a more functional life than I did have. It hasn't solved anything - I'm still going down the medical route (as encouraged by the psych) and I'm still fucking tired - but it has made a difference.

In the end, the main thing is getting back on the bike and being able to be confident in your health while training and racing. You've spent a bunch of time with specialists, and trying a psych is just another medical avenue you can go down and try and use to sort out what's going wrong with your body.