Sunday, August 29, 2010

Knowing abilities

One of the worst things about having and having to register a disability is that the authority over your own body is placed in the hands of another.  Or at least they often think they have authority or expert knowledge.  You should think that it can be taken for granted that, if nothing else, we are all experts on ourselves.  Yet so many responses to disability want to remove of us even that.

I should be able to feel whatever degree of pain I feel, and be honest about it.  Doctors want to tell us, however, that something "won't hurt very much," or "can't be all that bad."  "If you are able to make it through the day, it can't be that bad," "trigger point injections don't hurt very much."  It delegitimizes our experiences-- makes us feel like we are weak or some kind of freaks.

It is also exhausting being told what you can or cannot do on account of your pain.  For years, I did not jog or do any really difficult cardio because my back doctors told me I couldn't-- they forbade me to go running.  Then a few months ago, I am suddenly told that that diagnosis was crazy-- in fact, cardio is said to be one of the best things a person can do for one's aching neck because pain-causing cortisol is destroyed. 

When I first wanted to go to Japan as an undergrad, I went to speak with the disability specialist at Seattle U.  He would not believe that I could climb Mt. Fuji, even in light of other successful hiking endeavors.  I really wanted to prove him wrong (alas, Fuji-san was closed while I was in Japan, however, I did "summit" Mt. Takae). 

Now I am worried about telling any of the health care professionals on my "case" that I'm training for a triathlon.  Just telling some of my family has received a raised-eyebrow response.  I work my ass off every day at the gym despite chronic pain, why would a triathlon be any different?  It's just making my training more specific and being willing to accept "no pain, no gain," which any athlete must do.  Working out really hard hurts anyone to some extent- muscle pain associated with muscle gain.  I would just like to have the benefit of the doubt and the ability to judge for myself what I can and cannot do.

I have terrible asthma as well, and that's one reason I was so willing to give up running in the first place.  I don't much like running, but now I feel like I have to do the triathlon to prove something.  Why do I have to prove my ability to do something that any other 22-year-old woman would be assumed to be capable of? 

Then it's the medications.  I am now told that I shouldn't be placed on certain medications because, on account of my age, I am succeptible to addiction.  It is exhausting having to deal with this god-like guardianship doctors hold over their patients sometimes--  I was on Vicodin for years without getting addicted, yet somehow I haven't yet proved myself.  Apparently, my "stupid punk ass kid" perceived subjectivity trumps my "in obvious pain" subjectivity. 

I think this is what they call "medical patriarchy," but I'll have to look it up when I'm less pissed off.  In any case, I'm training for a triathlon in June and another in August, and the next person who hints at me being incapable of this feat is going to be attacked by my bottled up rage/silence.  I guess I should stop being quiet about it-- "quiet desperation," alas.  Grrr.

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