| Fireworks and Footpaths |
[Jul. 4th, 2009|01:50 pm] |
Happy 4th of July! I love the traditional Americana of the 4th--cookouts and music and the visual splendor of the fireworks, but I hate the noise of it. Gimps aren't designed for sudden noises. Our nervous systems, miswired as most are, simply cannot handle the abrupt sensory input. Our overdeveloped startle reflex, which most folks master by early childhood, goes into overdrive. Once startled, it's very difficult to stop being startled. We get stuck in the fight-or-flight reflex, and since we can neither fight nor flee, we can only wait it out. What's fun for my fellow Americans, who bless them, have an affinity for things that go boom, is a nightmare for me. Once the spasticity kicks in, I can no longer control my body, and the loss of control feeds my fear and confusion. I don't want to be a hysterical, sobbing mess at a fireworks display. I like the fireworks. I want to enjoy the colors, the beautiful sky flowers, and participate in the community bonhomie, but my body will not permit it. My body reduces me to a rational adult trapped in an unreasoning child's body.
And no, I can't just "control it". Attempts to manfully repress the unreasonable physiological response to what I know is harmless redoubles the spastic response, which, in turn, ratchets up the pain and fear. If you've never experienced spasticity, it's a body-wide charlie horse that affects both voluntary and involuntary muscles. It can affect breathing and the ability to swallow; the sensation of drowning in your own saliva is not one I recommend. The body, which gives not a shit for human niceties, counteracts the risk of suffocation by ordering me to scream like an opera singer being deflowered by a weedeater, or sob, anything to maintain the flow of oxygen. And I do. Because I want to live.
My mother was always horribly embarrassed by these outbursts, and once, after a particularly nasty episode at my uncle's wedding reception, prompted by the gleeful stomping of white balloons, she beat and berated me unmercifully, screaming at me to "grow up" and "stop embarrassing her", as if I wanted to be sitting there with snot running out of my nose, hyperventilating so badly that my bones felt too light and my skin felt loose and my chest hurt, as though I were doing it for shits and giggles. I was twelve and desperate to be a young lady, and loved my uncle(he was, in fact, my favorite and appreciated my emerging sense of humor). I was mortified. I wanted to stop, but my mother's anger only made things worse. The more she hit me, the worse the anxiety got, and the more gimpy I looked. She eventually dragged me to the car, where the beating continued in private all the way to the convenience store, where a concerned woman who'd seen me crying asked my mother if I was abused. My mother duly exited the store with her cigarettes and resumed the beating, this time for "making that woman think I was being abused." Yes, that certainly proved the accusation groundless.
I didn't know what was happening during these episodes until I became an adult and began to read other gimps' experiences. It was ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) maccaj who turned the light on for me when she discussed her own battles with spasticity. Until then, I thought I was just a hysterical, weak wimp who couldn't control herself, who was, in fact, a sniveling child despite my pretensions to adulthood. After all, strong people didn't behave this way. It never occurred to me that my grossly disproportionate response to loud noise had a physiological basis. I had always assumed it to be psychological, a moral failing by a needy girl who just wanted attention. That's what my mother said it was, and no one had ever told me differently. Certainly not doctors, who were too concerned with ensuring that I was as convenient as possible for my poor, poor mother, who suffered so under the unbearable yoke of me.
I wish doctors had told me these things about the body I inhabit, had told my mother. It would've made things easier for both of us. I wish they had told me that I age differently, am more prone to arthritis and other bone disorders, that my sedentary lifestyle would cause muscular and bowel problems, that sex would be more difficult because of my spasticity. But they were so focused on treating the maternal inconvenience caused by my Cerebral Palsy that they never bothered to treat me, that life spark that inhabits this inadequate meatsuit. I was left on my own, to fend for myself. I learned these things the hard way, and no lesson was harder than the last one, nor more psychologically and spiritually painful. I never felt more defective than when I realized I couldn't "just" have sex like everyone else. It was the simplest of acts, and I couldn't achieve it the first time I tried, or the second, or third, or fourth.
And when I called my mother in search of support and sympathy, she said, "Be careful. You'll ruin him." Him. She wasn't worried by my feelings of inadequacy, but by the possibility that I'd give my boyfriend a sexual dysfunction. It was then that I decided I didn't want anything from my mother but the inheritance when it came due. It sounds bad. It is bad, but it's what there is when the person who's supposed to love you unconditionally views you as nothing but a a set of conditions to be borne unless there's something in it for her, a scrap of reflected glory she can wring for herself from your meager accomplishments. I love my mother because that biological imperative runs deep, but I hate her, too, and it's the hatred that keeps me sane. Love alone would have driven me mad.
I eventually found a sympathetic doctor who gave me the medical means to successfully achieve sexual intercourse, but by then, I didn't trust my boyfriend enough to fuck him, and shortly thereafter, he left me for another woman. I still haven't used the pills for their intended purpose. God knows if I will. I hope so, but hope is thin and life is hard. For now that aspect of my life thrives and breathes inside my head, where it is unfettered by these bitter bones of mine.
I started this post to abjure my fellow celebrants to bear us limpers in mind once the official celebrations are over and perhaps refrain from detonating that M-80 in the terra cotta flowerpot at three in the morning because the beer and bratwurst says it's a really keen idea, but the path I intended clearly diverged into a darker wood by far, and so I shall stop now, lest the trees close in around me and I cannot find home again. |
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