On Gay Modern Love (The Steep Price of Our Forbidden Kiss)


In which The Gay Recluse provides a gay alternative to this week’s Modern Love offering in The Times. (Note: For Kayla’s response, please click here.)


THE rules forbade me from being within three feet of her. I knew those rules; she knew them. Sharing a drink meant coming a yard too close. But I wanted to touch something of hers, to claim my territory. So with an inch of her ale remaining, I reached for Toma’s glass and said, “Let me have a sip.”

She did nothing to stop me. The liquid disappeared, and with it went the infection-control protocol that had been drilled into us for years.

Like everyone else — yes, even lesbians — with cystic fibrosis, Toma and I carry certain bacteria that are harmless to the general population but catastrophic if transmitted to another cystic fibrosis patient. Our lungs, carpeted with thick, sticky mucus, provide a chemical environment in which typically innocuous germs can wreak havoc, causing more chest infections, more weeks in the hospital and a diminished chance at living into our 30s.

As with sexual orientation, the illness itself is transmitted genetically, so when people slide away from me down the subway bench because of my coughing, they’re wasting their energy. I can smear a bacteria like s.maltophilia over the tester lipsticks in Sephora and no one will be harmed. But stand too close to another person with cystic fibrosis, and I could kill them, or myself.

Sometimes I dream of leper colonies. I ache for my vision of quarantine: an apartment with others like me that has a medicine room instead of a medicine cabinet. Since I was a preteenager, I’ve mythologized this community, longed to mooch pills off a friend and compare vein sizes, in a niche where tired explanations (“This is normal. I’m always on antibiotics. I’ve always liked girls”) give way to brainstorming T-shirt slogans or confessing to that single cigarette.

Being with Toma gave me that. I met her on a January afternoon when I sat down a few seats away in the clinic waiting room. At the time, we both had staph growing in our lungs, but we didn’t yet harbor the more virulent bacteria concomitant with cystic fibrosis. Neither of us could catch anything that we didn’t already have.

Still, contact wasn’t encouraged, and we kept our distance. Her eyes fell upon my fishnets as the nutritionist ushered me out of her office; I gazed at her oxfords as she followed her back in.

The next time our clinic dates coincided, she asked if I wanted to get lunch. Over hamburgers, she told me about postcollege life. She had car payments and medical bills and rounds at the pub.

A geologist, she was working only three days a week. It wasn’t enough money, but it gave her more time for horseback riding, which she loved and wouldn’t be physically able to do five years down the road. Her lungs were O.K. for now, but there were the nonpulmonary complications, sinusitis and arthritis and irritable bowel syndrome.

“I know,” I said, thinking of my own intestinal drama. “I had to take Klean-Prep twice this week.” The hamburger’s taste was heavy in my mouth; I stared at a clump of gum in the ashtray, wishing I had a piece so I’d be prepared for a kiss.

As we said goodbye, we moved to hug, then stopped. I wondered if I had overestimated her tolerance; maybe my uncensored accounts of viscera had been too much. Or maybe she was just shy. Or maybe she didn’t want to break the rules.

I had already lost too much to the rules: mothers in waiting rooms asked me to sit farther away from their daughters; or nurses telling me to move back from my doorway because I was in isolation, and too close to the hallway. My summer-school house mother had sat me down saying, “There’s another lesbian in our dorm with cystic fibrosis.” I lit up at the news, but she wasn’t done: “She’s been trying to stay away from you.”

I had had enough. When I reached for Toma’s pint glass on our second date, I was sending the most deliberate and seductive signal possible. She followed my lead. She wrapped an arm around me as we walked. I held her hand, playing with each finger, bulbous at the tip from lack of oxygen. She picked at the hole in my stocking. I traced letters on her back. I leaned against her chest as we sat in plastic seats at the train station, felt her lungs beneath the corduroy and flesh.

We moved quickly after that. Sex held no greater epidemiological risk than casual contact. Our eagerness was partly due to the feeling that we couldn’t be rejected by one of our own.

But I didn’t lose my vanity, or my neuroses, just because Toma knew my body’s dirty secrets. Like anyone, I worried about the spot I missed while shaving and the flab on my stomach.

I could have told her that nutritional deficiency was making my hair fall out; she would have said I needn’t apologize. Instead, after a year of treating my withering hair as gently as possible, I bought a blow dryer and fried it straight for her, just as I would have done for any other girl.

I didn’t throw myself at Toma in hopes of unconditional acceptance; I did it out of defiance. I didn’t care what others thought; or even if they viewed my “real” illness—cystic fibrosis—as a manifestation of my “moral” illness. I wanted to provoke whispers of “How tragic” and “They should have known better” — and then rebuke them with a sense of O.K.-ness that our own parents hadn’t been able to give us, disease and sexual orientation included (to the extent these conditions can even be separated in the minds of most straight people, which is not very often).

We hadn’t meant for it to last. Our first touch, that first shared drink, occurred six weeks before I was to move far away from her. On a horizon marked by unknowable points of decline — questions of when, where, how things would break down — my departure time stood out for its simplicity.

For once, something was certain. Toma didn’t have to fear hurting me when her health deteriorated, or being hurt when mine did. Like our bodies, our relationship came including a cause of death.

But disease isn’t just biology. Like being gay, it’s a personal culture, shaped by stories, by people, by cities, by coincidences. And Toma’s was shaped differently.

As our relationship tapered into text messages and the occasional phone call, I dwelled on our conflicting styles of fighting, mentally breaking her down so there would be less to miss. I dated other girls.

But there was a clause in my moving-on project that said: “You can still want, and give yourself, what she promised you. You’re still entitled to that.”

And so I imagined that when I visited Toma, we would have sex. She would be on standby for when I needed to be reassured, through shared spit and skin, that I wasn’t poison, especially not to someone I loved.

Then came a March afternoon when I stood in my dorm room, phone to my ear, and told Toma I would be visiting soon.

“I’m growing cepacia now,” she replied.

Burkholderia cepacia: our apocalypse. For us, hearing “cepacia” is equivalent to hearing “Stage IV.” But all I heard was: “You can’t visit me.” That statement slowly evolved into the realization that I was never going to touch Toma again. And as it would be too difficult for us to be in the same room and maintain three feet of separation, I would never see her again, either.

I mourned what cepacia meant for us long before I could acknowledge what it meant for Toma: the devastation it forecast. It could drag a patient’s lungs down to useless within a year.

That summer, Toma had announced she was buying herself a model of an Aston Martin for her birthday; driveable midlife-crisis cars aren’t priced for 24-year-olds. But it didn’t matter that she and I had primed ourselves for death within two decades. We’d had a future, and I wasn’t prepared to lose that.

If she was going to decline, I wanted to be dramatic. I wanted to quit college and plant myself at her bedside. I imagined putting my hospital savvy to use, flushing her IV so she wouldn’t have to wait for the nurse, procuring her an Xbox from the children’s playroom. Although this ultra-competent caretaker side of me had her allure, the truth was I didn’t want to watch Toma disintegrate. By being there with her, I would be sentencing myself to the same end.

“Are you willing to risk your life for her?” a friend asked.

I wasn’t.

SO for the second time, I tried to forget Toma. I told myself she was supposed to be one episode, not my entire story. I had wanted to love someone with my disease, and I did.

But what about sitting next to her at the movies, listening as a character onscreen quipped, “I have a lethal disease”? Toma responded, “Join the club,” and we laughed, and I wasn’t the only one for whom it turned into choking.

Another place, another time, and Toma and I would have been banned from public school, from sleepovers.

But we grew up accumulating germs from sandboxes and stables and sodas. We grew up passing for normal, which meant keeping company with myriad people who — just as they assumed we were straight — assumed our coughing was caused by a curable-yet-contagious bug. I remember a group of runny-nosed bunkmates claiming I had made them sick, and the swell of vindication when our counselor told them, “Trust me, you didn’t get it from her.”

Now, on the subway, I sense a man’s glare as I cough into a napkin. He moves a few seats away, and I want to say to him: “I can’t hurt you. You can keep scowling at me until one of us gets off. You can catch my eyes and try to pull them up to the posters warning New Yorkers about the flu, but there’s no reason for me not to be here.”

Except I’m envisioning Toma, alive but inaccessible to me over the last eight months. And the next time the man glares at me, I actually share his desire to see me exiled. I’m thinking: You want me away from you healthy people? Away from the breeders? Quarantined along with people who sound like me?

Some days, I want that, too.

Kayla Rachlin Small, a recent Columbia University graduate, lives in New York City.



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