Klippel Trenaunay Syndrome

Perry Hagopian

On this first date in a long string of first dates, I'm in a dimly lit bar on New York's Lower East Side, bewitching a stranger with my hip wit, my shiny blonde hair, my ability to keep pace with his drinking. This guy (we'll call him Joel) likes me. I can tell, but then he says so: "This is the best first date I've been on." It's a nice sentiment, but I've heard it before, so I swallow it with a swig of PBR. It's easy to do when I know he hasn't even seen me yet, not really.

I was born with the rare circulatory disorder Klippel-Trenaunay syndrome (K-T), which translates differently for everyone who has it. For me, it means my right leg is larger than my left and trails slightly when I walk; my back is an uneven, fatty slab with a dense lump above the waist (which a guy in high school once called a meatball); and a gigantic port-wine stain reaches around my broad torso and down toward my right thigh. I know it could have been worse. I might have been blind; I might have needed amputation. I know that I'm lucky.

But K-T definitely complicates things. Tonight Joel hasn't a clue. The dating site where he found me promised that my body type was "Average," and as far as he can tell, it is. What else could I have chosen? There was no space for categorizing just my left leg as "Slim" and my back as "Not At All Back-like." No casual way to mention K-T along with my taste for Middle Eastern food and mistrust of cats. I can conceal my body for a time, to a point, with clever dressing and maneuvering, so what Joel sees stacks up to the pictures I've posted: yoga arms, bony clavicle, long, graceful neck in full view. And my pretty face -- my beautiful face, if I choose to indulge the flattery I've heard on occasion.

He's cute, but nothing terribly special, so when we go on a second date and I struggle to stay awake ("Wow, you play guitar? How fascinating . . . and rare"), it'll be easy to let him go.

I've let a lot of men go, for much lesser reasons than boredom. Tell me you're happy to be out with someone smart and attractive and see if I call you again. E-mail me to say you think I'm pretty -- watch what happens. After one date, a med student named Noah IMed to say that my body-type designation of Average was off-base. "You're slender," he said. Noah had seen me in pieces -- I'd made sure of it. Then I made sure he wouldn't see me again.

Because they're so disposable, first dates never make me nervous -- especially when I stick to my routine. I meet the guy at a bar I've been to so I can take into account the lighting, the dress code, the chairs. Once there, I keep my arms pressed against the drooping jowls of my sides, and my left leg crossed over my right. I flip my hair, display adequate knowledge of indie bands, and thank the bartender each time he refreshes my drink. I think about my sculpted shoulders and that line about how a woman needs a man like a fish needs a bicycle. If my companion suggests something spontaneous mid-date, as a lawyer named Steve once did ("I have an idea -- burgers at Shake Shack!"), I'll politely decline and hope he doesn't think I'm difficult. I'll get over it if he does.

But if I make it to a third date, it means I like the guy. That's when I imagine myself as Jaye Davidson in "The Crying Game": When my secret is revealed -- when my date chivalrously ushers me through a door and gets a good look at my back, or kisses me and glides his hand over a ridge he didn't know was there -- I am abandoned. Which is why I rarely let things get to that point.

Sometimes, though, my desire to be understood is overwhelming.

Next: Revealing Her Condition