Sunday, October 04, 2009

Being a good sick person

I still am totally fascinated with my brain thing. It's been nearly a year and a half since I had surgery, and most people I meet have no idea what happened to me. I don't have a shaved head or black eye I need to explain away anymore. For a while, I tried to be more vague when it came up that I had ongoing medical issues, but I only ever came up with a more spooky and ominous impression that way. I had a major medical incident which I'm pretty much better from now, even though it completely turned my life upside down - but let's move on to something more interesting. When I saw Rachel Getting Married, I was completely mortified when I recognized Kym's self-absorption in myself. I think it's probably a stage everyone with a huge illness goes through. When your entire world is what medications to take and when, you don't have a lot else to talk about. I have a couple of factors contributing to me being a broken record about my issues - there's the almost died, life changed thing, plus, the technical issues behind it are exactly the kind of thing that tickles my intellectual curiosities.

Both of my younger sisters got engaged to their long-time boyfriends over the past few months, and one of the first things I thought (besides "yay!") was, "Oh thank god -- something exciting is happening to someone in my family and it's not me having a stupid medical problem." I've been grateful to have such a supporting family and set of friends, but being brain surgery lady gets kind of old. Getting a new job where no one knew what happened to me was pretty thrilling - they aren't handicapping my performance with my condition in the backs of their minds. The crowd at Disability Support Services probably has a handle on the etiquitte necessary to have a working relationship knowing about a person's particular difficulties, but I've decided not to really disclose my issues, since it gives me a place not to be Brain Surgery Lady. The mood at DSS is kind of one of don't ask don't tell, where we work hard to let clients keep their privacy in general. I haven't met most of my clients (not that I have a lot), even now that I'm in the classroom providing services.

Rachel at Women's Health News wrote a post about the reception Penelope Trunk has gotten after tweeting something related to her miscarriage: Trunk got a lot of grief about oversharing, and she wrote a great rebuttal about how we do our best to ignore major medical issues women have because they make us uncomfortable. It's even more uncomfortable to have shame heaped upon you for even mentioning your ongoing miscarriage than it is to hear about it. Right on, sister. Miscarriage is often a Big Deal in a woman's life, and everyone tries to ignore it as much as possible. I'm sorry if it's awkward for you to hear about my bizarre medical condition (and I promise you, whatever it was that happened to me really was bizarre). If you had the patience and empathy to deal with other peoples' problems, you would realize that it's not all that bizarre for miscarriage or neurological problems to occur.

Rachel mentions that she has always found Trunk's blog to be off-puttingly self-promoting and sensationalistic. And then once something interesting happens to Trunk, she mentions it, and all of the sensationalism backfires on her. I spent most of my life kind of cultivating an eccentric personality, and all of a sudden it backfires when my neuro-immunity goes bonkers one day. I was weird before, and I'm still strange now. Very soon after I had surgery, one supposed supporter of mine decided to explain away my support for gay rights as a delusional side-effect of my condition. So if I'm going to have a different outlook on things, I have to conform in every other possible way to get anyone to take me seriously.
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