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

[attackfish.livejournal.com]

I have to eat all organic. I have had to since birth (well, until I was weened anyway). Actually, I didn't eat organic until I was nine, nor was i on any kind of treatment. Fortunately (or unfortunately, it might have clued Mom and Dad into what was going on) I hadn't developed asthma or anaphylaxis yet, so this period didn't kill me. It just left my growth stunted and gave me brain damage because of the number of times I had seizures, three and four times a day. And because I have the sort of seizure that makes me run around acting like a maniac (exaggerated fight or flight response coupled with an inability to respond to verbal cues or have any regard for my own or others' safety)no one knew they were seizures until I was nine either.

As a child, I was alternately diagnosed with depression (and I was obviously acting out because of it) paranoid schizophrenia, catatonic schizophrenia, ADD, (which I have in a mild form, but the medication sends me straight into these seizures) autism (that was a doctor's favorite) and deeply spoiled, in other words, my strange behavior was my parents' fault. Those diagnoses all ignored the fact that I slept until I was seven months old (I mean solid. I woke up to eat and fell asleep still sucking.) I didn't talk until I was two, I have violent heart arrhythmia during these seizures, if I'm having a reaction at night and it doesn't go into a full seizure, I have violent nightmares, I had virtually no hand eye coordination, I was always sick, and I had the worst touchy stomach and hay fever of anyone my parents had ever met.