This is the beginning of a major project I'm undertaking, to tell the story of my body, and particularly of my chronic illnesses, in the context of the poisoning of our planet for profit.
I was born on a farm in western Puerto Rico in 1954. My parent, blacklisted communists from New York, were unable to find work in the political climate of the 1950s, and bought an abandoned coffee farm, where they started growing vegetables and raising hens. This way, they guaranteed their food supply in spite of McCarthyism. During my mother's pregnancy with me and the first two years of my life, I was exposed to large quantities of the pesticides DDT, dieldrin and lindane, as well as smaller doses of parathion. As it turns out, I also have a genetic variation in my liver enzymes that makes my body very inefficient at breaking down and getting rid of a large range of toxicants, so that what I get exposed to hang around for a long time.
By the time I was nine, I was getting out of breath going up hills, and I began having what I now know were partial seizures. Time would slow to a crawl, my mouth filled with a foul, metallic taste, and I was unable to move. It must only have lasted seconds, because no-one noticed, and I just took it as one of the odd things about being alive, and didn't tell anyone.
We moved to Chicago when I was 13, where the coal smoke and steel mill fumes irritated my lungs and combined with the cold meant I spent all winter, every year, with bronchitis and all kinds of other respiratory infections. I was also getting too tired to walk even a six or seven blocks, often preferring to wait 45 minutes for the bus. At 17 I had my first grand mal seizure, but I didn't know. It was only last year that a friend told me what she'd seen. At 18 I went away to college in northern New Hampshire, to clean air, snow-covered mountains, and flaming forests punctuated by the white slashes of birch trunks...and ts likely that it was there, sometime during my three and a half years there, I was bitten by a tick and infected with Lyme disease and Bartonella.
The years since then have been a slow decline into chronic illness. I've got the usual sheaf of diagnoses: chronic fatigue immune dysfunction syndrome, multiple chemical sensitivities--OK that's the last time Im using that term on here, because the disruption to my body isn't the result of "sensitivity." It's from overexposure to toxicants, so from now on I'm saying Multiple Chemical Injury--fibromyalgia, ocular migraine, Irritable Bowel Syndrome (again, who wouldn't be irritated!,) diabetes, food allergies, chronic pain...on top of which is epilepsy, a migraine-induced stroke and multiple head injuries.
Last summer my body could no longer stand the levels of mold in my apartment or the Downy my neighbors pumped out of their dryer vent toward my door, and I stopped being able to breath in my home. Some of you followed my house-hunting drama. My body's reactivity has reach the point that I can no longer live in most houses.
So I have designed a small, chemically safe house on wheels which I'm raising funds to build. My plan is to spend a year traveling around the US, a nomadic artist in residence speaking, writing and making art about ecology and health, through the story of my own health, my own ecosystems. The journey will be documented through video photography and all the other stuff I said, and posted as a series of web movies.
And tonight I'm sitting at my desk shaking, because I just finished reading about how low repeated doses of the pesticides lindane and dieldrin cause chemical kindling of epilepsy, a process by which the excitability of the brain is permanently increased, seizure thresholds lowered and there are changes in gene expression that affect how our brains respond to neurotransmitters like GABA and glutamate. In all the years that I've been seeing neurologists, not one of them has ever mentioned environmental causes of epilepsy, but tonight I found a series of articles by a woman who works at the EPA and writes about this and about MCI (remember?) as the result of chemical kindling. I'm shaking because while it's exciting to find evidence of what was done to me, it's also horrifying to be face to face at last with proof. My epilepsy is quite likely a product of capitalism and its effects on the environment.
Aurora Levins Morales is a disabled and chronically ill, community supported writer, historian, artist and activist. It takes a village to keep her blogs coming. To become part of the village it takes, donate here.
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