My newest piece, published in Tits and Sass:
This is a hard piece for me to write, because everything I’m about to describe is still very fresh.
Two years ago, the all-over body pain and extreme exhaustion I’d been dealing with began to become more common. But I was still only using my cane sporadically, allowing me to work the stroll and occasionally go on outcalls from Backpage.
The doctors had confirmed fibromyalgia, as well as chronic fatigue syndrome. At the time, these diagnoses felt validating. The body pain, the spasming tendons and odd stabbing pains that I could name—this one felt like a rusty railroad spike going up through my foot, another like a piece of rebar traversing my torso diagonally, another like needles being shoved under my fingernails—were not my imagination, nor was the exhaustion that kept me sleeping for 19-plus hours a day, often for weeks at a time.
I was still occasionally able to make it out without my cane at this point. It had become a comfort and it provided a sense of security, a way to signal a request for patience when I was unable to move as quickly as others, and it allowed relief from the pains that shot like lightning up the bones of both my legs. But I knew that as a fat, tattooed, (although cis passing) trans woman, the cane would work against me on the stroll. Though I was 47 at the time, I easily passed as closer to 30 (the “Trans Fountain of Youth”?). But sex work is mean. Anything that detracted from cis-hetero-able-bodied standards of beauty meant lost income, so I leaned a lot. I’d stop by the church gates and rest, half-hoping I’d go unnoticed so I could regain a bit of my strength, half-hoping I’d be noticeable enough to catch a car date without having to move to more lucrative stretches of the stroll.
About nine months ago, a friend in one of the sick and disabled communities I’m in on Facebook suggested that from the sound of my symptoms— in addition to those listed above, I’d developed brain fog, my exhaustion was becoming markedly worse, and I suffered from dizziness, cracking and popping joints, arthritis, and more, that I should be tested for Lyme. Since Medicaid and most insurances don’t cover adequate testing, she offered to pay the $256.50 to cover my test through IgeneX. I took her up on her offer, and sure enough, I tested positive for not only Lyme, but Babesia, Bartonella, and later, through other testing methods, Mycoplasma, Candida, and heavy metal poisoning. Lyme Disease is a tick-borne autoimmune disease; once you’ve got it, your body is open to countless other comorbid conditions.
They say the first year of treatment is the worst. That the die off, especially of Lyme bacteria, is slow and releases toxins like ammonia into the body, exacerbating symptoms. For the past nine months, I’ve slept an average of 22 hours a day, five-six days a week. I’ve developed POTS, Postural Orthostatic Tachycardia Syndrome, a condition whereby when I go from lying down to sitting or standing, my blood pressure suddenly drops and my heart rate soars to triple digits, often resulting in immediate black-out fainting. Most recently, I’ve begun suffering from MCS, Multiple Chemical Sensitivity. I can no longer tolerate exposure to most artificial and some natural scents without my lips, tongue, nasal passages, skin, and throat burning, and dizziness and a pounding migraine developing within seconds of exposure.
It’s this most recent development that’s been the most life changing in terms of my ability to return to the stroll. Until I developed MCS, I held onto the hope that after this first year of treatment, the “hell year”, I’d be able to go back to work. But let’s be real here; men do like their scents, don’t they? If they bathe at all, they seem to love their Irish Spring, or other deodorant soaps, not to mention Axe (the worst!) and cologne. Even something as seemingly innocuous as the detergent or fabric softener used to wash their clothes can set off a profoundly debilitating reaction in me.
Not having enough spoons. (Photo by Flickr user Iris Slootheer)
This all feels so raw. It was just this past week that I had to buy a respirator mask just to go through the lobby of my building, where the super has placed a plug-in air freshener, and the elevator, that’s mopped daily with something heavily scented.
It was also within the last couple of days that I realized how bitterly ironic it is that I, like many of us, came to sex work because of a lack of privilege, as well as the confluence of mental illness, autism, and chronic illness that precluded me from being able to hold down conventional employment (I’ve literally never not been fired from a civvie job). Now it’s a chronic illness that’s making me unable to stay in sex work.
I can’t begin to say how heartbreaking it all feels. It’s like the end of a life, and I’m afraid of losing closeness with so many people who’ve become my chosen family.
Sex work has never been easy for me; being very niche, I’ve never been high volume. It was never empowering, but as a crazy, autistic, chronically sick and crippled trans Femme, it was a way for me to cheat capitalism a bit. It helped me do something that people like me aren’t meant to do in this world: it helped me breathe. By simply sucking cocks in a dark car, I was able to make something above the bare minimum that I get from SSI. Sex work was access in an inaccessible world. What’s more, it’s given me a community I’ll always treasure and support in any way I can.
The sad and ironic thing is that what brings so many of us to this work can in so many cases be exactly what eventually makes it impossible for us to carry on.
There is no safety net for most of us. There’s no such thing as a union or pension fund. But maybe there can be. We’ve built support collectives like Lysistrata, following historical models like the Workman’s Circle and the Black Panthers in attempting to create self-sustaining funds for our marginalized community the way they did for theirs. Maybe one day these things can become the space from which we build a fund to support not only workers who are struggling, but those of us who have lost our able bodiedness and had to retire. A whore can dream.
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