Wednesday, May 13, 2009

what does disability/illness look like?

Many years ago when I first got my disability parking pass I started encountering peoples' assumptions of what disability looks like. When I got out of my car, parked in those spots, time and again a few people would actually get the nerve to come up to me and inform me that those spots were reserved. After I showed them my pass they backed off, and usually if I was feeling sassy that day I'd follow the showing of the pass by saying something along the lines of "it's a disability parking spot not an elderly or ugly people spot".

Of course, that did not make me any new friends, but when people are coming up to you to inform you you (perhaps) parked in the wrong spot, they're not there to makes friends with you either.

I get that I look good. I'm not saying this from a cocky place. Most times I like to take pride in how I look. I won't go over the top and clutch my lipstick on my death bed - I don't even wear it in my day to day life - but I don't think that being ill is an excuse for not taking care of my outer self. The outside self, our appearances, also help improve our mental state. There are now beauty programs for women going through cancer that deal with that. How we present our package is another form of medicine for the soul.

What I don't quite understand are societal expectations of the chronically ill. I don't understand how these people (we) are expected to look yucky. I am shocked and surprised at other people's surprise to how I look. It's as if because I look good or sound good then I couldn't' possibly be doing as bad as some of the days I describe. Where on earth does that come from? Why aren't "sick people" allowed to take pride in their appearance? I get that my spirit is still strong and fighting and living. I get that in the end it's the spirit that carries us through long past our death-dates. (There exists plentiful research on this and my Mentor happens to be one of these researchers in chronic illness and spirit body medicine: but that's a whole other post). I get that "if I was truly sick" my spirit would also reflect my physicality: look like shit. I disagree. Sometimes the spirit is stronger than the physical container we live in. Yes, studies show that ill people know when they're on the way out: they just get tired. I don't mean sleepy tired, but things get hard. It's hard to describe - perhaps because I'm not yet completely tired but I am tired nonetheless. Time and again research has shown that even the most energetic, sassy spiritual person just gets fatigued. And that fatigue does show (or do I hide it all for show?).

As for me, why am I not allowed looking good or sounding good? Why can I not revel in the good days? And why does looking good take away from the reality and gravity of the situation.
OK so that part's simple: people only see me when I'm out and about and I'm only out and about when I have the energy. If you don't see me, I'm usually on my home O2 or resting up. It's that simple. However on the days that I feel more human, I sure as hell want to look human. What's wrong with that?

Do I have to look shitty just to prove I deserve that parking spot? Do I have to bring my medical records everywhere to prove that I'm allowed to ask for a seated teller at the bank? (They have seated stations, usually taken up by the elderly). I suppose it's no body's business why I have the parking pass, or why I look as good as I do when I'm out and about.

I won't be clutching a tube of lipstick during my last moments on earth but I do want to be who I am - to the very end. If I was cute coming into this world, why can't I be going out? It's bad enough that those loved ones close by will have to deal with some inhuman moments - as I get more ill. I'm very thankful it's just extreme fatigue that those people witness, however if not for them , then for myself I find it important to put on my strappy turquoise sandals and keep on trucking! (Besides, I've figured out that heals actually slow me down a little... This, is a good thing!)

For the record, to tonight's class I wore my turquoise strappy heals, a cute embroidered skirt I made last summer and a matching top, and I felt good - despite taking it slow today (I feel I'm not absorbing enough O2 these days).