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Nerve Classics: Double-Edged

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Home to a fatal disease and a great rack, my chest is a complicated place. 

by Kayla Rachlin Small

Perhaps it's the bourbon, but lately, we've been feeling nostalgic. With writing this good, can you blame us? "Double-Edged" originally ran in 2008.

There is no question: I have a good chest. Not so big that it demands bras from specialty retailers, but big enough so that button-down shirts always pull. My breasts are firm enough to let me saunter down the block in layered tank tops, no bra.

People look, and I let them. I used to have a tomato-red swimsuit that came undone every time I leapt into the water. I dove and dove, put my breasts back in place and redid the halter's clasp, aware that even underwater, I was being ogled by the adolescent lifeguard.

My chest has commanded attention my whole life. At age one I was diagnosed with cystic fibrosis, a disease that wreaks havoc on the respiratory, gastrointestinal, endocrine, and exocrine systems. No organ goes untouched, but the lung damage is what ultimately proves fatal.

 

Long before I understood why my brother could go shirtless at the beach and I couldn't, I knew my chest was problematic. It made itself heard through relentless coughing, my lower lungs contracting in fits. It made itself seen in the Kleenexes I filled with mucus as I coughed and spit, coughed, spit, coughed. Cover your mouth, the adults scolded. Nothing contagious, but still, something that makes people nervous.

My father learned to perform physical therapy when I was first diagnosed, and the routine remained his responsibility. The treatments were intended to loosen the mucus in my lungs — caked in there like dried Elmer's, it made breathing hard and infections persistent. "I'd sit in that chair and you'd fall asleep in my lap," he'd tell me later, wistful for my toddler-aged compliance. After I outgrew my dad's lap, PT sessions were relocated to my parents' bed. For twenty minutes before school, my dad would thump my chest while I watched Small Wonder or Underdog, television being the sole incentive for cooperation on my part.

When I was ten, we switched to a less complex method of airway clearance: exercise. My dad handed me a jump rope each morning; at night, unconvinced by my fake snoring, he pulled me out of bed to jump. Still in my pajamas, I whipped the rope around while he sat on our pink couch and counted aloud.

We stopped doing traditional chest percussion because I got busy and belligerent, not because I had developed the breasts to render it awkward. "You're going to develop a couple years late," my pediatrician informed me. Just another symptom of the illness.

So I waited. My mother bought me a bra when I was eleven, after I had constructed my own by cutting ten inches off the bottom of a teddy-bear-patterned undershirt. I weighed seventy pounds and had nothing to support other than the delusion that my body was normal for my age. I filled Ziploc bags with pudding, a trick my best friend learned from the film Now and Then. She was growing rapidly. I'd borrow her bra and tuck the pudding bags inside, then tour the mirrors of the house. I took shoulder pads from my mother's sewing table and tried those. Tried tissues. Looked at the gel cups advertised in fashion magazines and thought, if it comes to that…

But I knew from Seventeen that healthy girls need not panic over permanent flatness unless they were over sixteen. And by sixteen, I was growing. When the radiology tech asked, "Are you wearing anything metal?" I pulled my bra out through my sleeve. Enough time in medical institutions can make anyone lose their modesty. You lose the property rights to your body. But I owned my breasts. I wanted to show them off. At the children's hospital I attended, the gowns were sized for pre-pubescents. My flesh swelled under the fabric; cartoon clowns splashed across my nipples. I told the nurse she didn't need to hunt down a larger size.

My one piece of fancy A-Cup lingerie, a teal lace bra, was forced into the giveaway pile. Certain styles of clothes, I learned, would never work on my body. This was caused partly by my breast size, and partly by the shape of my ribcage — the muscles surrounding my lungs had overdeveloped after years of exertion. The air trapped in my small airways gave me a barrel chest. I wanted fifties-style sundresses, strapless with structured tops that ballooned into full skirts. But they were out, as was the prom gown with the mermaid bodice.

Jumping rope was another casualty of development. Even with a bra, my breasts slammed against me with each landing. My dad sat there counting, my brother stood waiting to insult my jumping skills, and my cleavage sped up, threatening to fly across the room.

"Daddy, I can't do this anymore. Things are getting in the way." He had poured his paternal protectiveness into my chest, and now the borders of his territory were being scaled back, my sexuality requisitioning the space for itself.

Toward the end of high school, my lung function dropped temporarily. The pros were called in. Chris, a physical therapist, came to my house to perform the same chest percussion routine my dad had once done. "You might want to cover up," he would say, and I'd throw a t-shirt on over my camisole before lying down on my bed. I was always underdressed when Chris arrived — bralessness and short shorts were my ways of reminding him just how much intimacy he was demanding.

My breasts are decoys, distracting the customer from the muck underneath.

Hands cupped, Chris would clap a section of my chest for three minutes, then have me rearrange myself into a new position. I'd toss my SAT II review across the bed and flip over. I never gloated about providing a fringe benefit Chris didn't get from pediatric or male patients. He was trespassing, arriving in my doorway and hitting my breasts and arranging my pillows and pocketing his check.

My breasts rewrote the way in which my upper body received attention. Construction workers catcall. The Victoria's Secret saleswoman says, "I'll get you the next size up," and I take that as proof of goodness. A chest that hasn't given in to gravity, that's remained creamy while my arms and face have freckled, that makes me feel desirable even if my stomach looks similarly convex: how could it not be my best feature? When I take off my sweater in a coffee shop, the maneuver pulls down the wifebeater underneath. I feel eyes peeking at the exposed satin of my bra and I agree with the approval. Never mind that I've asked the barista for an extra cup because I'm coughing up too much mucus to spit into tissues.

My breasts are decoys, distracting the customer from the muck underneath. So maybe I can get a man's attention with a neckline. Does that mean he's going to find it sexy when he has to furrow under hospital gowns and EKG sensors and skin I haven't washed in a week because I'm too exhausted? Because that is what he's getting into — not at the end, when the numbers go down for good, but now.

The median life expectancy for a person with CF is thirty-eight, up from thirty-two in 2000. I'm twenty-three. But my private prognosis is a fickle thing. Ask me how long I'm going to live, and my answer will have little to do with the drugs in the pipeline. When I see photos of Madonna, nearly fifty, I bask in the prospect that older isn't synonymous with decrepit and asexual, and my predicted lifespan rises accordingly.

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.

There's a difference between the absence of shame and the presence of desire.

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.