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I was 12, and I was standing at my school's snack bar, waiting to buy a sandwich. Next to me was Susan, who, like me, was on break from rehearsing the sixth grade play. Susan didn't like me. I knew this for a fact, since she once announced it publicly. I don't know why she disliked me. I didn't have any classes with her; I never really spoke to her. But it was middle school. She didn't need a reason.
"You're ugly."
She didn't say it in a mean way. It was kind of offhand, like she was talking about the weather.
"You're ugly, too."
I was just as casual, but that got her. She was flustered. I don't know what she expected from me. Maybe I was supposed to cry?
"Well," she mumbled at last, not looking at me. "At least I'm not deformed."
I pretended not to hear. I had won, and she knew it. And I knew it. But she was right. While beauty may be in the eye of the beholder, let's face it -- at 12, in sixth grade, I was deformed.
I am deformed. I was diagnosed with rheumatoid arthritis at age 5, and this was the picture the doctor painted of my future: hammer toes, "swan-necked" fingers. No movement in my wrists, ankles, eventual crippling of knees, elbows, hips. Much of it has now come to pass. And because of that, I've faced a lifelong struggle when it comes to sex -- not the physical act so much as the most crucial part of getting it on: feeling desirable. In this society, being sexy is required if you're a woman, and from Susan's hurtful comments onward, it's been made clear to me that my arthritis -- and, in fact, any physical shortcoming -- is not hot. What I can say, though, is that we can get past it, with a little defiance ("You're ugly, too"), a little denial, and a little patience until the right partner comes along (he has).
We are obsessed with being sexy -- so obsessed that we get implants, suck out fat, pump ourselves with Botox and even mess with areas best left unmessed with. But sadly, my condition is one thing plastic surgery can't fix. Finger joint replacement is still experimental, and usually not recommended unless you're over 40. Nor are cosmetic procedures. For a while, I considered getting a nose job. And a chin implant. The arthritis had impaired the development of my chin. (As for my nose -- gee, thanks, mom.)
When I mentioned this to my rheumatologist, she was horrified. "Do you have any idea what that would do to your immune system?" You see, rheumatoid arthritis is an immune system disease, where cells attack healthy tissue, particularly in the joints, and destroy it.
Boy, talk about self-hatred, huh?
My condition is most obvious in my hands, with the left worse than the right, my left middle finger frozen at the middle joint. It comes in useful when I need to make obscene hand gestures, but other than that, it's awkward and unsightly. The finger right next to it, the ring finger, is a bit more flexible, though equally twisted. But the sparkly new ring I have been sporting there for the past two months makes it easier to look at.
And to wonder over, because I never thought this would happen. I never thought I would get engaged, much less married. After all, being deformed isn't sexy. And neither is the disability that comes with it.
It's not like there are many role models out there in the media. The disabled are rarely portrayed as sexy. Brave, yes. Melancholy, sure. Angry about their lot, check. Objects of concern and pity (stop calling me "special"!). But sexy? No. The hot babe who gets the guy isn't limping toward him, gnarled fingers grasping his strong shoulders as they kiss. And if she is in a wheelchair, it is only temporary.
Because if you're disabled, you're pretty much unfuckable.
But I'm not about to ask you to strike up the violins for me. I started dating in ninth grade, which is perfectly respectable. I was, in fact, the first in my circle of perfectly abled friends to get a date. As a bonus, he was the guy I had been crushing on for months in French class.
I went to the Winter Formal, I went to the prom. College was an arid experience, but that's because I went to an all-female school. The few men around were either terrified or had harems. If I'd had any sapphic leanings, I would surely have scored (something my fiance bemoans to this day).
After college, my luck improved. For a few tumultuous passionate months, I was sleeping with a man who can only be described as a hottie, and who told me, point-blank (after he'd already gotten some!), "You are really sexy." It was such a Harlequin moment, but I know he meant it.
One time, I was driving home from his place, listening to "Love Line." A woman was talking about being disabled. "I can't get laid to save my life!" she told Dr. Drew. I felt for her, thought about how much I could relate. And then I realized I was going home after getting laid.
Why wasn't I unfuckable then? I was in denial. About being disabled. I never thought of myself that way. Dry dating spells had nothing to do with the way my fingers or toes or elbows looked. I just needed to lose a few pounds, needed to get out and meet more guys. I am a decent conversationalist, I have led an interesting life, and I have an interesting job. And there was never much wrong with my legs, or my hair, or my skin. Woo them with the good things, I figured, and ignore the bad.
See more stories tagged with: relationships, sex, rheumatoid arthritis, disabilities
Alessandra Djurklou is the food editor and theater critic at the Press-Telegram in Southern California.
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