Thursday, August 1, 2013

Fraudulent Brain Damage? No Such Thing.

When I was in England at the end of May, I went back to the ASPIRE group as the alum guest speaker. It was the day after I had flown in, but I didn't let the travel affect me, because I think the group is really good, does important work with people who've had strokes, and they gave me a chance to run my mouth, which is always welcome.

Before I started talking, though, one of the group's members, a woman about my age escorted by her mother, said that she felt "a bit of a fraud" attending the group. She had had her stroke quite recently (like many in the group) and had not been hit very badly: she suffered some left-side weakness, and that was it. The worst thing for her was that she got tired knitting, and could only wield the needles for short periods. Compared to the people in wheelchairs, she was fine and dandy, she thought.

Soon after I joined Fitocracy (and started the "stroke recovery" group there), I found a group for "people with disabilities" and even though I did not consider myself disabled, I joined it. Almost at once, I posted to the group that I felt like "a bit of a fraud" joining the group because I expected to recover. As if, somehow, the possibility that I might one day recover disqualified me. I was going to the gym regularly, after all. 

Over a year later, I don't have that problem any more. It is going to take me years to get better, and there are some things (vision, balance) that may never truly recover. In the meanwhile I am disabled. I am not making shit up. I am not a fraud. I worry that I say I can't work, but I write this blog, don't I? I make funny on the Internet, don't I? I can play games and read comics can't I?

Then I remember that it takes hours to write blog posts, and far longer than it once did, to read the context to make the funny. I recall that I read comics because I have to read and even novels are damnably hard work. When I play video games, there are whole classes of games I can't play, when I play tabletop games, I can't run them weekly, and I can barely sustainable length of a normal session. 

So, although I joke that I am a welfare queen, I am profoundly glad that the social safety net has not failed me, at least. Both because it will be several years before I take out what I put in, but more because it should not fail anyone. That's part of what it means to live in a civil society: we help each other out. Put baldly, it also makes economic sense to afford me the recovery time to become a productive member of society again. Maybe not everyone is fiscally worth it, but that's the cost of coming down from the trees and deciding to band together to build a society, instead of just flinging poo at each other. 

In the end, I told the knitter that she should not feel any kind of fraud: she had brain damage and it was affecting her life. Knitting was symptomatic, but useful as a metric: she should use it to measure how long she can now knit, each day, and celebrate as that time gets longer, gradually or in spurts. She may not be as badly affected as many who get brain damage from a stoke or otherwise, but it's a mistake to trivialize your own damaged brain; if you are to recover, you must be honest with yourself.

It is hard to be comfortable with the idea that I am damaged, perhaps permanently, and still sustain optimism that I will recover. It's harder still not to consider myself diminished, when in some respects I clearly am: trivially I couldn't run to save my life from zombies. One thing I am sure I am not, though, is a fraud.