In which The Gay Recluse provides a postscript to our gay alternative to this week's Modern Love piece in the Times by Kayla Rachlin Small. (For those looking for our informal-but-telling quantitative analysis of Modern Love, click here.)
Dear TGR,
I loved your riff on "The Steep Price of Your Forbidden Kiss" (a title which, for the record, was not of my choosing).Your version worked for me because I've long thought about the connection between disease and homosexuality (as forms of alterity, and as challenges to our culture definition of pathology). But moreso, it made me proud as hell, because it got to the heart of the issue upon which Thomas and I most differed. To me, illness is a culture, an identity, a political issue. It's a status that 99% of the world sees as unfortunate and oppressive. Iâve been bombarded with the message that if I were a good person, I would say "CF doesn't define me!!" and "CF is not an issue in relationships." I have never been able to say those things. I majored in Cultural Anthropology because I wanted to study subcultures and the Other and the ways in which those positionalities inform our values and symbols. I leeched onto gay narratives because in them I saw community and art and rejection of norms, and I believed I would someday find cystic versions of all that. Eventually, painfully, I learnt that there was little CF community and even less CF pride (Permanent banishment from the healthy population isn't something one is encouraged to flaunt. Everyone wants to be healthy, goes the wisdom.) I know now that I love all those gay stories and films because each one makes me briefly believe in the promise of a parallel culture that I may never get. Every July, the Gay Pride parade makes me incredibly sad, because there it is in front of me, the constitutional right to assembly put to the best use, and that was exactly what I couldn't do with "my people" because of cross-infection risks. This "wishing to embrace my disease and wave my freak flag"was precisely where Thomas' personal culture diverged from my own. "The only thing I want is to be a regular Joe, just normal," he told me. My response was, "I want the opposite." One day as we waited in line at the cinema I pointed out a poster for X-Men: The Last Stand and said "I wish we could see that." He scoffed. A few weeks later, when we were joking about our genes, I referred to myself as a mutant. He said, "I've told you, X-Men is not real." Of course it's real, I wanted to tell him. It's a metaphor for Otherness. If gay people get to say "this movie stands for us" then certainly us actual genetic mutants should get to do the same? In preparation for the first time Thomas came to my home, I hung a gigantic poster of five drag queens on the back of my bedroom door. I caught glimpses of it while we were having sex. Yes, there I was with someone "like me," but there was something I imagined in that poster that Thomas didn't share: something anti-vanilla, something involving pride, some kind of solidarity. After I moved away from Thomas I thought hard (and wrote hard) about this clash. And this I came to understand: I had my myths just as he had his. It wasn't as though I was honest and he, emulating normal, was in denial; I've played Freak with just as much intentionality. He wasn't so different from me, after all. He had the same desire to belong, to be part of something established and dynamic, to burrow into a community and receive clean lines of self in exchange. The only difference was that he wanted to belong to the Normal and I wanted to belong to the Abnormal. "That's his myth," said my favorite professor when I showed her my first writings about Thomas, in which I excoriated him for being traditional and wanting to blend in. "And you have yours." I currently believe that who I am -- who I see myself -- has almost nothing essential to it. Cystic Fibrosis can't be the thing that's made me, because Thomas (and others) are SO different. Rather, as I wrote in Modern Love, I am a product of the rest of my circumstances and the stories I've loved and the people who have moved me and the things that have seemed available, that have reached out to me as if to say we will work, we will help you, adopt us, we are perfect scaffoldings for these inklings of a story. Disease was the raw material I was given to work with, but the person I became was just one possible result. It's an identity I made for myself just as Thomas made his. All that said, I still love him. But I did move on. I now have a female best friend, M, who also has cystic fibrosis; we share things I could never share with Thomas. Given The Gay Recluse's reinterpretation of my story, I wanted to share this photo of M and I. We once again broke the rules and, unlike Thomas, she was all for documenting it. Finally, a coda to my story: in April 2006 (at which time I'd seen Thomas at our clinic but had yet to speak to him), I visited Berlin. Each time I rode the S-Bahn westwards I passed a building bearing the word UNTOUCHABLE in enormous graffiti. I photographed the building, just like I photographed a Poison Girls Club tank top in a store window, for I believed these things applied to me. A week after I returned from Berlin, Thomas and I went out for the first time. In May 2006, after Thomas and I had abandoned safety precautions for shared beer and body fluids, I went to Berlin again. But when I rode the S-Bahn west I became incredibly confused: where was the UNTOUCHABLE sign? As it turns out, in the five weeks between my visits, part of building had been knocked down. All that remained in view as that train barreled toward Friedrichstrasse station was the graffiti that I'd seen atop Untouchable. It read: SuperGays. I took that second trip to Berlin with a close friend who is a lesbian. We're also both Jewish. One afternoon as we were walking, she told me how much she liked being gay, how she liked having something that made her different. I knew what she meant. I said to her, "You know, if we'd been born fifty years earlier, this, being Jewish, would have been that thing for us. Our defining identity." But we were born when we were, and we each had been Othered in our own way, and I like to think we're damn lucky for that.
Kayla Rachlin Small
First Trip to Berlin: "Untouchable" and "SuperGays"
Second Trip to Berlin: "Supergays"
Kayla and M document a kiss. E-mail Kayla at: kaylarachlinsmall [at] nycmail.com.
Kalya - congratulations on an excellent piece of writing in the NYT. That I'm in a similar position - mid-twenties, just graduated in social anthropology, with CF - makes it all the more resonant. When I read pieces of writing like yours - a public explanation and embrace of the strange (and sometimes painful) normal/abnormal liminality of CF, which I feel I 'get' more than anyone without CF reading it - I have a strong urge to get involved with the 'CF community' you mention. The condition clothes itself in normalcy, promising a 'normal' life and then slowly taking every vestige of that normality away. Ironically, at the same time, the vagaries of cross-infection deny the 'sufferer' the opportunity to find solace with others similarly affected. So the idea of a kind of extended CF family seems such a warm and comforting thought; facing down CF's challenges with others in the same situation, taking them on together, 'Team CF'.
I'm not sure it's ever quite worked out for me that way, though. Because much as I enjoy the occasional repartee on the subject of sputum, I spend a lot more of my time doing things that I have in common with other people. Although all of us with CF have this enormous fact of a medical diagnosis in common with each other, CF is also an enigmatically diverse condition; and so everyone has different complications, and progresses differently. Add to that the inherent diversity of people, generally, and it means that we're about as mixed up as any other group might be. For me, it's not a binary 'in/out', 'pride/shame', 'abnormality/normality', or (respectfully) 'you/Thomas' thing. As you say: "the person I became was just one possible result"- on a continuum of possibilities.
All this said - I think if there was a CF community of people who wrote like you - I might be tempted to give it a go. Thank you, and keep up the great work!
Posted by: fellowtraveller | 03/17/2008 at 12:17 AM