How managing my chronic illness(es) made me fall back in love with being queer 

Minutes before my lovely surgeon (who I believe to be a fellow dyke) slices into my abdomen to remove endometriosis from my uterus, I think about the foursome I had during Pride Month. I think about the rave I attended, where I danced with my girlfriend and my beloved friends until the sun rose. I think about how these moments are brief pockets of time that feel sacred to me because they are blips in my otherwise afflicted existence. During these blissful moments, I am blessed with being able to move freely without pain. These moments feel like coming up for air from a sea of confusion. They are tokens of life that I cling to and draw energy from when I feel consumed by my pain.

I wryly refer to my complex mix of chronic illnesses as “hysterical woman disease.” The mix is actually PTSD, addiction, autism and endometriosis. I am always in some kind of pain. Pain rules all parts of my existence, including the pleasurable ones. Yes, on top of all this excruciating pain, I am a BDSM practitioner. I find freedom in channelling the experience of pain and pleasure in a way that I control, as opposed to the aching pain that mysteriously persists within my body. 

Throughout my life, I’ve been obsessed with horror films. Part of my autistic relation to the world is through the lens of films that I’ve seen. Recently, my queer chosen family and I saw David Cronenberg’s Crash (1996), which pairs beautifully with his new film, Crimes of the Future. Crash depicts a world of misfits who have or develop a fetish for car crashes and their collateral: blood, injury, death, twisted metal. All of the people in this hobbyist group have injured themselves in crashes, and their disabilities are not just respected, but flaunted and lusted after in their sexual encounters. Before this, I hadn’t seen a film that so accurately depicted how I felt about the intersection of my own sexuality and disability. I live with my own body horror every day. My body expels blood from my vagina near constantly, and the pain that it endures in that process is interminable. My breasts hang heavy and swollen and painful; my uterus feels swollen, as if I were pregnant. On its face, none of this is sexy, right? But as I saw James Spader, the protagonist of the film, lick the expanse of scars on his co-star Rosanna Arquette’s legs before slipping his fingers inside her, I felt seen. As Holly Hunter, the female lead swung Rosanna’s leg brace over her hips as they kissed, I teared up. As we sat on the couch, transfixed by the film and holding each other tightly, I knew this film was carving out space for my own freakdom. My destiny is to push the boundaries of what is conventional about sex and queer identity, especially as a fat, disabled, mixed-race, ultra-femme, not-to-be-fucked-with pervert. 

I’ve been prepped for surgery for about two hours now. I text my chosen family group chat a photo of a cup of my urine and say “for all the piss freaks in the chat.” This spurs a lovely conversation about peeing during sex, which takes my mind off the fact that I am terrrified of what will result from this procedure. It’s long been speculated that I have endometriosis. This is a condition where uterine lining tissue grows outside the uterus while still being subjected to the same hormonal cycles that it would be inside it. This means the errant tissue thickens, sheds, the whole nine yards. This results in excruciating pain for the person housing all this alien overgrowth of tissue, as well as a host of other complications. The annoying part about endo (a common shorthand for endometriosis) is that the only way to diagnose the condition is by doing surgery—the surgery I’m prepped for—to biopsy the tissue on your uterus. 

My body has slowly deteriorated over the past ten years. As an adolescent, I started having heavy, intense periods, which persisted and worsened as I got older. The back pain followed. I lived with level 8/10 pain for most of my 20s. When I wasn’t fighting for collective freedom, working at a coffee shop or making art (and sometimes during these essential activities), I would drink and rail Xanax (and any dissociative/downer I could get my hands on) to numb the pain. These were all numbing remedies to my pain, both mental and physical, that I spent my life running away from. My implicit agreement with myself was that as long as I stayed some level of fucked up, I didn’t need to think about the fact that it was getting increasingly harder for me to walk, or talk to people, or sleep at night, or sit comfortably. Once I got seriously sober (I’ve tried to get sober for about seven years, but it never took) almost a year ago, I made a commitment to myself to figure out what was going on. My sobriety meant I couldn’t go to the bar or the club anymore. It meant I couldn’t do ketamine and melt into the arms of a friend or a lover to escape my reality. I couldn’t sing karaoke with my fourth martini in my hand, feeding off the energy of a crowd. It meant I couldn’t have a few drinks and feel “normal” during a conversation. I was so used to being insulated from my pain under layers of un-feeling. Getting sober was a recommitment to myself, and a stark realization that crisis mode was my normal. 

Centring my health felt, to me, like leaving the queer community as I knew it. Particularly, it felt like the mainstream (read: able, white, thin) queer community had slipped away from my life. My therapist required that I stop being on the internet because Instagram sent me hurtling toward suicidality and self-harm, including a near attempt last September. I quit social media, where I had built a following of friends and acquaintances after years spent in Oakland, New York and Asheville, North Carolina. I no longer had access to the hall of mirrors that comprised life on social media. Once I wasn’t constantly thinking about generating content and where it would go, who would see it, what it would mean culturally and for me personally, I began to relax just a touch. The experience felt like taking the red pill and leaving the Matrix of B-list queer fame. Just call me gay Morpheus. It was heartbreaking how many friends I lost to this departure. Or rather, the illusions of friendship that were broken by deleting Instagram. 

 Everything became quieter. My mind stopped trying to come up with a meaningful analysis of our world that I could translate into snack-size posts. I started reading more, especially as my symptoms became worse and I became bedridden for days at a time with pelvic pain so bad I could barely stand or walk without crying. I tried to focus on what it meant to do the work outside of yelling into the void of the internet. 

In my activist life, I’ve been vocal on the internet and IRL, writing long-ish posts trying to get at the nuanced intersections of race, class and gender that undergird our current social systems. My goal was to not just agitate but educate simultaneously—which was exhausting, but felt right for a time. My first protest was in 2008, at age sixteen, marching through the streets of San Francisco with my first girlfriend as we rallied against Proposition 8, the measure that would go on to constitutionally ban gay marriage in California until it was legalized in the U.S. in 2014. I continue to be heavily involved in feminist and antiracist organizing, forming my college’s chapter of Students for Justice in Palestine with two of my best friends. After the deaths of Eric Garner and Trayvon Martin, and so many others, I was in the streets of New York almost every single evening, holding hands with my friends and evading the NYPD’s kettling strategies. But once my body and mind started to protest against my constant pushing of their limits, I had to figure out a way to live my life in a way that would continue to be politically active, while accounting for a new and generous understanding of my own limits. 

One way I came up with to do this, especially in the puritanical hellscape that is the United States, is reconfiguring what it means for me, as a fat freak dyke, to be a woman. This is ironic, considering my self-described hysterical condition, but it is work I see as necessary. The Supreme Court overturned Roe v. Wade during Pride Month. The LGBTQ2S+ community’s reaction was “we’re next,” but we’ve already been implicated, as reproductive justice affects us all and bills aimed at eliminating the existence of trans youth continue to propagate. I felt this complicated understanding of the implications of Roe v. Wade’s absence in my core—suddenly I needed to confront my own personhood in the eyes of the U.S. government, which I’ve never really felt that fond of in the first place, as well as the layers of my gender and sexuality. Once I let go of the idea that my rights were never really protected, I was able to focus on the fact that my networks of family and friends are most important to me, and because of that, what will ensure we are safe, housed and fed. 

As the state revokes what little rights to personhood we have, I started to feel with more urgency the need to build counterpublics as mainstream public life seems increasingly more hostile to people like me. These alternative, underground universes are communities that rely on ways of life that fly under the radar of the mainstream, largely cis, white and heteronormative public sphere. My personal underground is my network of friends and lovers all over the world, who have connections stretching out even further. We take care of ourselves, because, to quote Audre Lorde, we were never meant to survive. My radical idea of womanhood is messy, outrageous, lewd, campy and unafraid to fuck with gender. If a person can get down with that idea, and not in the TERF-y way, they can come be a part of my world.

In the midst of all this self rediscovery, and reorientation of myself to my queer womanhood, I began to consider exactly what it meant to be a part of a queer community. As my wife’s trans mentor and mom always say, “There is no community, only your relationships with other people.” That started to ring truer and truer to me as I considered what my new place in the queer world would be without social media, substances and whatever illusion of able-bodiedness and neurotypical-ness I’d created for myself. I wondered what it means to be queer when you’re in a hospital bed. What does it mean to be a part of Pride when you cannot stand for hours at a time? When you cannot socialize without burnout? When sex hurts and you have to stop because you’ve dissociated so hard you don’t know where you are? When you don’t have a place to post photographs of your own existence to prove your reality? For all this historical work and hard-won openness to be as freaky and wild as we are, it felt humiliating to admit to myself that I actually needed to scale back. I couldn’t be the party girl I once was. This period was an excruciating reconfiguration of my own world view. I looked to the past to find other forebearers of this feeling of difference. I found solace in the writing of Sylvia Rivera, Audre Lorde, Octavia Butler and Samuel Delany—queer folks of colour who wrote about the complicated intersections of gender, sex and death that we live with daily. 

On this year’s Pride Day, my wife and I took public transit into San Francisco from Oakland, where we live, so we could visit the National AIDS Memorial Grove. There were droves of vibrant queers filling the subway trains. Everyone was happy, feeling free, hanging off one another, fixing their makeup, taking swigs of White Claw, taking photos and cackling. It was enough for me to experience the energy as we split from the fray and headed toward Golden Gate Park. We entered the shady grove, filled with rocks inscribed with names and dates of the deceased. We sat on a bench. I felt their presence, and thought about the lives they lived. Just by existing as people with AIDS, these souls broke barriers. Many of them were activists who fought the fight from their sickbeds. Many of them were arrested for protesting while terminally ill. Some of them worked their whole lives to find stable housing for their communities. Some of them were musicians who made music you could groove to hard enough that you forgot you were dying. I let their spirits speak to me. I felt so defeated, as I do every Pride, that I could no longer attend the events that make Pride meaningful to me. I felt invisible. But when I sat in the grove, my heart swelled with kindred energy. I was left with the confirmation that there are so many ways to be queer in the way that I want to be: fearless, unconventional, revolutionary and—most importantly—sexy as all get-out. Tears rolled down my face as I found my home with my chosen ancestors. I thanked them, and headed home to lie down.

I paraphrase Audre Lorde’s as I lie in my pre-operative surgical bed: When I dare to be powerful, when I dare to use my strength I am not afraid. I shift in my hospital gurney and text my wife that I loved the feeling of the IV going into my skin. I text my girlfriend photos of it. She says, “I bet you’ll look cute under anesthesia.” I smile because she’s such a pervert, and she is wonderful. The surgical team is delayed, so I wait and wait. Finally, they wheel me in. I’ve been silently crying for about 10 minutes. I close my eyes and remember the conversation my queer chosen family had the previous night as we ate dinner together. The other three members of this family are trans women—my wife, my girlfriend and our dear friend. They discussed, as they often do, strategies for getting the gender-affirming surgeries they want and need in the notoriously fucked U.S. healthcare system. As they casually traded tips for getting bottom surgery preparations like laser hair removal and electrolysis covered by insurance, I flitted around, cleaning up the kitchen, finding solace in the fact that we were all intimately familiar with the idea that surgery is another form of care. It dawned on me in that moment, and in the moments before being wheeled into the OR that care is the true key to queer survival. Not posturing on IG, not call-outs or dating apps, not getting so hammered we can’t remember the past. We must take care of our own. I have cared for so many of my trans lovers and friends after their gender-affirming surgeries. I have cared for my lovers and friends after protests. I’ve received so many late-night hugs and check-ins. Even my queer surgeon holds my hand during my final conscious moments in the ER as she whispers to me that she’ll stay there until I fall asleep. I finally had my answer to all my questions about the “queer community” and its place in my life, or rather what the community revealed itself to be through layers of excavation, heartbreak and sweetness. This genuine, reciprocal and loving care, is what queer community is to me now.