My Fictional Selves

My fictional selves are like Charlie's Angels or intergalactic ninjas. They get so much done while wearing silver lamé bodysuits. Actually, there's no version of me that looks right in that kind of an outfit, but I make up these women–and then they irritate me. I'm so not a superhero. A few days ago I sat at my desk, decidedly un-silver-lamé, pretty much wrecked by 2 pm. My hands hurt. My neck muscles knotted up. My elbows and shoulders throbbed. The joints in my toes stung. But I didn't even take physical inventory; I didn't have that much sympathy for myself. I wanted vengeance. Me and myself were going to have a little snit with each other. I looked at the little clock in the upper-right-hand corner of my computer's screen and thought, Three hours. You're wasting three hours. Three years ago, that would have been a fresh half a day, an oasis. Programs would have been designed, proposals and essays written, projects cracked open. Remember that fantasy caffeinated self? I saw a glimpse of her silver cape as she sped by outside my window. Up until three years ago, I had been relatively lucky, health-wise. Then after a thyroid problem, the symptoms of rheumatoid disease exploded full-bore, and I gradually pieced together my diagnosis: an auto-immune disease that attacks the joints and in general messes with things. Before that point, I had thirty-nine years of thougtless and lovely mobility. They were wonderful, and I am so lucky I had them. Still, today, I have some good days–most days I do have a lot of mobility, and some days I have almost all. I do still have days of 90 percent mobility, but I don't take them for granted. It's been three years, and three years would seem like long enough to get used to a new situation, but my mind and my body both struggle with the burden of the other people we used to be. I recently finished reading Emily Rapp's Poster Child, about the experience and effects of a birth defect that limited her mobility, requiring a foot amputation and multiple prostheses. She includes a vivid explanation of phantom limb syndrome, the effect of a mind that has already mapped its body and continues to signal the emergency of a missing appendage. Rapp explores deeply the effects of this challenge on her sense of self, how it changed every experience, creating new adaptations and permutations. She writes honestly instead of aiming to create a fantasy of unreachable saintliness. She doesn't push the “learning” and the “peace” of her experience, because it doesn't end. She also writes about the effect of constantly imagining the other versions of her life, the what-if bodies, the alternate universes in which she had two symmetrical legs. So–my disease is not at all crippling. And I've had years–decades–to take my body for granted. That past of taking myself for granted has birthed the silver-lamé superstars. I still want a body I can take for granted, a body I can push, a body–the body of a twenty-year-old, I suppose–that occasionally needs sleep and food but bounces back stronger after a glass of water and a donut. If you have a brain then you're constantly imagining, so I think it's unrealistic for me to tell myself to “stop it” and to forget about what it felt like to be pain free. I will probably have longing toward those other bodies, how it felt to be them, for a while. Maybe for the rest of my life. I suppose that's normal. At the same time, this phantom body syndrome, the fantasy version of myself, can easily take over if I let it. It's a video game of shame in which this body, the one I have, always ends up losing, judged as inadequate. I can't help but imagine a paradise in which I would get everything done that I felt I needed to do. Those silver lamé women are fantasies, a kind of efficiency porn, two-dimensional bodies. They're not real. One of the ways I'm working on living with this disease is to shake my head and try to clear my eyes of the flashes of silver, and I have to first name them, to realize they exist, that they flit through my vision when I'm frustrated, when like a little kid I want to throw down my purse and my keys and swear. I suppose everyone has to contend with these former bodies in some form as they age and their bodies change. My break-up with my phantom selves is happening faster, sooner, so maybe I'm getting a challenge done that other people have to face later. Yeah, I like that: check it off the to-do list. That's another fantasy, but it's one that's slightly more realistic. And I have to remember that I have strange and powerful mental silver-lamé abilities, and I believe in powers that develop to compensate for others that wither. I have to imagine new superheros: that on bad days I can wield my metal cane to trip ninjas. As I squint for my close-up, the thoughts and ideas I have are sometimes foggier, but sometimes the plans I hatch are brilliant. ————- This is for a “blog carnival” about “How Do You Prevent the Disease from Taking Over?” from a prompt by Kelly Young, whose blog RA Warrior is an essential part of the rheumatoid community.


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