Ooh, That Pesky Nexus of Health and Personal Identity

[attackfish]

Back when I was still young enough to register as a Girl Scout without checking the “adult” box, I attended a lot of Girl Scout leadership building events.  In all of them it seemed, the councilor had each of us introduce ourselves by saying our names and something about ourselves. The format, (hi, I’m so and so and so, and I’m a whatever it is I am) made for countless twelve step jokes.  It was all a bit pointless, because as everyone said their names, I was too busy trying to figure out what I was that day.  Most days I just settled on “Hi, I’m Fish, and I’m a writer.”

At one of these events, a girl who I had only spoken to briefly but who had a apparently overheard me telling my troop mates that I hated it when I couldn’t eat anything at the events asked me outright why I hadn’t said “hi, my name is Fish, and I have allergies.”  It hadn’t even occurred to me, that’s why.  I stammered and left, unable to think of anything to say to her, feeling demeaned and uncertain, and stunned.

I spent so much of my childhood trying to be anything other than just the weird girl with allergies, and in that moment, I felt as if I had failed.  If a girl who had only just met me and happened to overhear me talking to my friends could only remember me as Fish, the one with allergies, what was all my hard work about?

But of course, I knew I was more than just the girl with allergies.  My friends and parents knew I was more than just the girl with allergies.  I had shaped what I wanted to be from what I had, the same way anyone else did, and that’s all I could show to anyone.

Yes, I was born with numerous allergies that cause everything from hay fever and indigestion to seizures, anaphylaxis, and asthma.  Yes, I have a strange and complicated rotation diet free of almost all prepared food.  Yes, I give myself my own allergy shots every three days.  Yes, I get sick ridiculously often because my immune system doesn’t work right.  Yes I have to leave if someone is wearing perfume or hand lotion, and I have to take medication and go to bed if I’m anywhere near smoke.  Yes, I have to carry an oxygen tank wherever I go for emergencies.  I can’t deny any of this, nor can I deny that this has been a huge part of my life and that it has helped shape who I am.

What I can say however, is that it is not the sum total of who I am.  Instead, I am a writer, a jeweler, a student, a reader, a friend, a bad musician, a poet, a daughter, a sister, an aunt, a niece, a granddaughter, a Jew, a voter, a liberal, a feminist, a political activist, a gold award recipient, a volunteer, a Girl Scout, a political science major, a cook, a lover of food both homegrown and exotic, a pet owner, a fantasy lover, a musical lover, and a thousand other things, but I am not disabled.  I have a disability, and that’s very different.

Comments

Re: could be worse

[ivanoma.livejournal.com]

My friend's young involuntary vegan is the way she is due to the mother's exposure to chemicals during pregnancy and she did get her payout from the people who her mother worked for AND she was diagnosed VERY early. Anne does not mind anyone out there knowing that this is in no small part do to her. the fact that the little girl's twin (who aside from Down's syndrome does not have as many problems as his sister) is the godson of the daughter who happens to live with her also contributed. Evidently, the children felt better when they visited Anne's chemical free household, eating chem free snacks. And you can get something from somebody to help if you supposed to be insured. Anne handles these people very well I would seek her advice. The ADA does include chemical sensitivity but I do not believe the cost of food is included in any insurance policy but it simply isn't right that they refuse to pay medical bills. My sense of injustice wishes that you were younger so that it could still be fixed. I wish I knew more personally cause I KNOW that help is out there. In my last few messages I was merely trying to convey how fast the number of people with the same problems appears to be growing. On another note, I think you need a sentinel if you don't have one already.

Re: could be worse

[attackfish.livejournal.com]

Unfortunately, as I said, the company my father works for is self insured with a managing firm. The expense of paying out for coverage goes right back to my father's employer, as does the cost of any law suit. My father, who is high up in the company, says that at management seminars, he learned exactly how to make a person who made trouble for the company go away without a wrongful termination suit. Theoretically and legally, we have a good case, but in actuality, we can't bring it to court. Equally unfortunately, I'm not typically chemically sensitive. I am chemically sensitive, but mine is genetic, and immune based. Because of this, the immune therapy and treatment I receive is different from most chemically sensitive. It's this much rarer treatment for my specific orphan illness that my insurance refuses to pay for.

One of my close friends has allergies, and she always likes coming over because my house, and my room especially are a bit like a fortress against allergens and chemicals. it's nice