attackfish | Ooh, That Pesky Nexus of Health and Personal Identity

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Ooh, That Pesky Nexus of Health and Personal Identity

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.

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My friend's mongoloid godson's twin sister has quite a few allergies since birth, among them or perhaps a separate condition is her inability to have meat of any kind...or else she dies. Part of her condition is she must also have it organic all the way. My friend's mother is also chemically sensitive. She keeps cats who are as sensitive as sentinels for early warning purposes(she gets to have extra pets and pay a lower pet deposit as they classify just like seeing eye dogs.) I generally give organic snacks as gifts because the only sorts of stuff she can eat cost 2-4 times more than what I buy. She is so badly off for so long, Disney resorts call her as the expert as to what sort of things they need to do in order to maintain compliance with the disability laws that affect businesses like theirs. The conditions these people live with aren't even their fault...a pest control company mixed things wrong and accidentally made nerve gas in her apartment. Her unborn son failed to develop eyes or a complete digestive system and had to be aborted. she would never be able to have any others after that. She is still in a lawsuit 18 years later now in no small part do to the fact that the official responsible for making certain that this sort of thing doesn't happen without severe penalties owns the company in question...and keeps getting re-elected.

If YOU ever stay in a resort hotel at Disney, Orlando, chances are it was designed for people like you by Anne McCauley(a Person like you)

I can't go to amusement parks because my immune system can't handle being around that many people and their assorted germs.

The whole point of this post is that there is no group called "people like me" there are people with this illness and people without it, but others with this illness may not be like me at all except for that one thing.

but you ARE a person

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.

When my parents finally did figure out what was wrong with me, I had to be on an extremely restrictive diet and immune treatments for a full year before we could even figure out what my allergies are (as it turns out I'm one of the lucky people allergic to almost everything) because my immune system was too out of whack for us to tell.

Probably because I didn't form memories until I was nine, and therefore have no recollection of anything before that (would this explain my late reading? Yea, maybe.) I remember being nine very vividly. It was as if I had walked out of madness and fog into the sudden ability into think. it should have been wonderful, and on one level it was, but I was a pariah. Supposedly I was mostly left alone while I had seizures, but once I stopped having them, I wasn't frightening anymore. I was socially abused, emotionally abused, physically abused, and miserable because of the way my peers treated me. When boys would beat me up, they wouldn't get in trouble even when they kicked me in the face because my teacher and my principal both believed I was an evil wicked child who had it coming. No one spoke to me. I hid in the library and went from being unable to read to having a seventh grade reading level in two months. By the end of my tenth year, I had a twelfth grade reading level. I switched schools three times because of the cruelty of my fellow students and my personal notoriety. Unfortunately, I lived in a small town, so everyone knew me at my new schools too. We eventually moved when i was in eighth grade, long after I had stopped having seizures (except very rarely) because of my dad's work, and finally I was able to have a free start. No one in my small town ever let me forget I was a dangerous weirdo, no matter how many Girl Scout awards I received, no matter how good my grades were, no matter that I won the school science fair without the sort of help from my parents most of the kids got, no matter that I was first chair flute, no matter that I was the apple of my history teacher's eye, no matter that I had the highest standardized tests of anyone in the school, to them I would always be that weird little girl that I was in third grade.

My mother and father both have this illness in more mild forms, and without the seizures, and in my dad's case, his compromised immune system led to prostate cancer.

Along with industrial chemicals, food additives, and products of combustion, I'm also allergic to perfectly normal things like dogs, cats, pollen, dust, limes, eggs (or more specifically the sulfur in the yolk) certain herbs, and mold, especially mold.

I cannot have children, and even if I could, my illness is genetic. I found this out when I was eleven. I can't go to theme parks, because that many people in one place is something my immune system can't cope with. Actually, since they used to sell organic fruit at Disneyland, it's better than the rest.

I am very glad that I do not have more than one severe illness. My doctor has a child with this and schizophrenia, and she had a child with this and cystic fibrosis. He died very young indeed. I just have this and Raynaud's, a circulatory disease. However, with just this alone, I have been battling my insurance company to pay for my treatment for years because they claim I'm not sick. good luck getting them to pay for my food too. Worse, we can't sue them for breach of contract, because my dad's company is self insured, and the company has a policy of firing people who sue for made up infractions to avoid a wrongful termination suit.

None of this was of course the point of this post. I merely wanted to say that despite the fact that I have a severe illness, I want to be seen as a person, with important facets of my being that have nothing to do with health.

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.

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

Hi, you linked me to this post in

sarahtales's comments and I just wanted to say that it's awesome. When I was growing up I was the weird girl whose arms and legs didn't work right. Watch out, kids, Becky's not allowed to play crack-the-whip in gym class, because her joints might come apart. It isn't something anybody can ever tell by looking at me, and never has been, which has been interesting because in high school and college I put off quite a few possible dates at parties when they tried to pull me out of my chair to go dance and I screamed "NO! Don't do that, you'll dislocate my elbow!" I don't even know how true that is anymore because it's so ingrained in me to be careful; I haven't actually dislocated anything since I was a kid, but when I was three I was in twice in the same week having dislocated the same arm and the doctors thought my parents were abusing me. But it's never been something I think about consciously all the time--just a subconscious thing, don't hyperextend, don't hang from things, don't let anyone pull on your arms and legs. If you ask me to tell you something about myself I'll probably say, I'm a knitter, I'm a feminist, I like to read, I play video games, I make historical clothing. Those are the things that make me me. My body, my disability, is a part of me. That's all.

I have very weak decalcified bones, and I was in martial arts all through middle school and high school. My best friend and often partner in martial arts classes freaked out when my forearm actually bent around hers, the bone, not the elbow bent, I mean. I broke bones all the time, and coupled with the fact that my parents had to physically hold me down during my seizures so that I wouldn't hurt myself and I got a lot of bruises from this, a lot of the parents and teachers whispered about abuse. It sucks.

I get what you mean about the ingrained behaviors. I became so used to not doing things that might be a problem, that they became the habits of a lifetime. You and I both have invisible disabilities, which means our disabilities are more likely to be questioned or assumed not to exist. Well, now that I'm oxygen dependent, not so true for me anymore, but... so
We're more likely to get the weird looks. You look like you're fine, stop making a big deal out of everything!

Exactly. My disability is not me any more than my green eyes or the mole on my neck is me. it's just something I have to deal with, like car trouble.

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Ooh, That Pesky Nexus of Health and Personal Identity

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