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.
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branchandroot
Re: could be worse
Date: 2008-05-24 04:01 pm (UTC)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.