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My last-ditch option for buying more time is lung transplantation. If I don't die waiting, a surgeon will scrape out my lungs and replace them with a cadaver's, and my great rack will be sacrificed — the scarring from the surgery will mutilate it. That's the trade-off: a functioning interior for a disfigured surface. The success rate of lung transplants is increasing, but it's still an imperfect science. Mortality — my own, or my breasts' — looms large.
I'd like to say that, spurred on by the prospect of an early death, I've made impressive headway into my lifetime sexual to-do list. I haven't. When it comes to sex, I'm equally convinced that I've missed my window, and that the best is yet to come. I imagine the future as one of loss, in which I'm debilitated, exhausted and tethered to an oxygen concentrator. I also fantasize, like my peers, that the next five years will bring sophistication, money for lingerie, and a roommate-free home with extravagant granite countertops upon which to have sex.
She still has CF, that woman I dream of becoming. She needs someone who can take that. And while there are potential mates out there who don't want a sick girlfriend, there are also those who can cope just fine. "You have nothing to be ashamed of," a dormmate once said after seeing me topless. I can imagine a partner feeding me the same line in reference to CF. He fancies himself understanding; he finds my body attractive in spite of what's wrong with it.
But there's a difference between the absence of shame and the presence of desire. There's a difference between someone who can overlook what's wrong with me and someone who wants to look directly at it. This is how I want to be loved. I want the disease inside my chest to be recognized, and touched with as much tenderness as the flesh on top, and maybe even lusted after like that, or loved.
Last spring I met a guy who liked my body. He contacted me after reading an essay I'd written, so he knew about my CF before knowing I was stacked. He had his own medical problems, and he said I felt like home. Lucky for us both, he was a breast man.
He wanted sex to be a break from our bodies' freakish tendencies, not a showcase for them. I wanted the opposite. I dreamed of an eroticized wound, one that could be circled with permanent marker, licked and coated in semen. I wanted my disease to have the same substantiality that my flesh did when clamped between his teeth.
One Saturday during sex — the best, most strenuous sex I'd had to date — my breathing became ragged and painful. Afterward, I got gloomy. "I'm not going to be able to do this when my lung function goes down," I told him. I wanted normal. I wanted fifty more years of heart-pumping sex, with him, and with other people. At such times, it hurts that my disease is an issue, that it shapes sex, makes its presence known. But the alternative hurts more.
"My lips are all salty," he said, after he'd kissed his way down my torso and up again. "That's so cool." He knew what the taste meant. It had been covered in his biology textbook: faulty chloride channels affect the movement of salt throughout my body, giving the skin its telltale flavor. I touched his lips; they had the crinkly texture that comes after eating a bucket of popcorn. My disease, made manifest on his mouth. I held my breasts up to him, and trusted that even if he wanted them for their size, for how they felt in his hands and how they looked in a t-shirt, he remembered what lay beneath.