Женщина с опухолью в спинном мозге нашла силу в удовольствии, а не в борьбе с болезнью

Ten years ago, my right elbow started to hurt. The internet suggested I had tennis elbow, so I stopped playing tennis. Once the outer elbow pain moved inward, I changed my self-diagnosis to golfer’s elbow. I stopped lifting weights, competitive dragon-boating and bouldering. For good measure, I consulted an occupational therapist about my nightly bullet-vibrator routine after reading that golfer’s elbow is common among construction workers who operate heavy-duty vibrating machinery. He listened closely and said he’d note VRI on my patient chart. I asked what VRI meant, eager to end my diagnostic journey. “Vibrator-related injury,” he responded. We busted out laughing. After three years, weak hands and shaky legs had joined the elbow pain. None of the diagnoses I researched or received (a pinched ulnar nerve, tendinitis and thoracic outlet syndrome) fully explained my symptoms. Eventually, an MRI found a tumor growing inside my spinal cord. One surgeon estimated that without treatment, my body would undergo complete, permanent paralysis from the neck down within a year. The surgery itself carried the same risk. Against medical advice to schedule surgery immediately, I postponed it for five weeks. Even that was barely enough time for all my worry, denial, resentment, anger and end-of-life arrangements. Most importantly, this tumor confirmed that the pain I had suffered for years had never been my fault. I wanted to relish the hobbies and pleasures I’d abandoned in case I never experienced them again. Moreover, I’d already booked a snowboarding trip to Chamonix-Mont-Blanc, and my immigrant sensibilities would not let that money waste. Dating also became urgent. Within moments of matching with Nicolas on an app, we were on the phone sharing belly laughs and hard truths. I told him about my diagnosis and flight to New York City that evening to prepare for surgery the following week. Hours later, we had our first date over a pot of tea inside my Seattle apartment. Nicolas neatened my favorite cardigan with an electric fabric shaver while I packed. We talked non-stop until my ride to the airport arrived. Our kiss goodbye lingered like we’d never say hello again. When an unexpected job interview brought me right back to Seattle three days later, Nicolas asked me to be his girlfriend. Surgery successfully removed my tumor. Days turned into three weeks in the hospital’s inpatient rehabilitation unit. By day, I was a patient, relearning how to walk and use my hands. By night, I pretended I was just a person on the phone with her boyfriend. Nicolas and I wove dreams about sailing together, sleeping underneath stars at sea. He promised I’d be able to walk again, and when we aged, I’d be sitting on his lap in his wheelchair. Everything hurt. Many nights, I wailed with regret that Nicolas and I had not had sex before my body changed. Did I lose the chance to enjoy his touch? Was my body now too broken to please him? Would numbness make it too difficult – not worth the effort – for him to please me? My sisters called him Santa, short for Saint Nick. And who but a saint could desire me as my desirability faded? There’s a lot of talk about sex these days, namely how little of it we’re having. I too had deprioritized sex and dating, mostly because boyfriends are embarrassing and men ain’t shit. But lately I have found myself re-examining my sex life after surgery. How has medical trauma and disability changed my relationship to sex and pleasure? In the wake of my diagnosis, I experienced first-hand how loved ones and even doctors can dismiss the difference between being alive and feeling alive. Medically, not dying is the goal. It is a task so big that we are often too grateful, exhausted, unprepared or ill-supported to think about what’s next. If we’re lucky enough to survive, pleasure is simply a trivial extra. I had enjoyed a healthy, active sex life before surgery and thought working back towards that would prove cancer and disability hadn’t changed me. That I was more than just a patient. But the reality was that my spinal cord injury and surgery had an impact. Dr Lisa Ruppert, a physiatrist and spinal cord injury specialist who treats cancer patients and survivors at the Memorial Sloan Kettering cancer center, helped me understand the sensory disorders that immediately followed surgery: temperature dysregulation, heightened and dulled sensitivity to touch, bladder and bowel incontinence and sexual dysfunction. I told her my concerns about having sex again, which is common for people living with spinal cord injuries. We started with some basics. Ruppert suggested strategies to trigger arousal: keep the lights on for visual stimulation, stay on top of the sheets to mitigate sensory overload and discover whether and where my erogenous zones had shifted. “For someone with spinal cord involvement, we have to think about what’s still working and what’s not,” said Ruppert when I spoke to her recently. “You and I had a lot of conversations about how it’s going to feel, what still feels good, what doesn’t. That also depends on a patient’s willingness to explore their own body.” Able-bodied people don’t often think about how their bodies work. Not until my spinal cord injury did I ever consider the mechanics of sexual pleasure. Sexual arousal is more complicated than just touch and response, said Ruppert. There are two pathways: reflexogenic and psychogenic. Reflexogenic arousal is triggered by “touch stimulus” to the genitals. That information travels to the spinal cord and causes vaginal lubrication or penile erection. Psychogenic arousal, on the other hand, does not necessarily require physical contact. It’s stimulated by sexual thoughts, fantasies, emotions and other inputs – like what you might see, hear and smell. I remember passing Ruppert’s instructions on to Nicolas, whose knowledge of my body became as significant as my patient chart. I loved our sensory games, but started treating them like rehab. Dates with Nicolas slotted into my calendar alongside weekly physical therapy, occupational therapy, aqua therapy and talk therapy sessions. After we broke up, I resigned myself to a medicalized, dissociative relationship with my body, believing sex just wasn’t for me any more. “Sex after surgery was a project,” I admitted during an interview with Rachel Smith, a licensed marriage and family therapist who specializes in sex therapy. Most of Smith’s clients find her when their sex lives are disrupted by critical life transitions. I have a master’s degree and career in public health, and it wasn’t until I was researching this piece that I learned sex therapy could have been part of my post-operative care. “But what if pleasure became an exploration?” Smith offered. “Something to be discovered versus something to work on.” I noted my use of the word “project”, which held associations of achievement, work and productivity, a stubborn tenet of millennial hustle culture. I also often described my experience within the US healthcare system as a project – its maze-like inefficiencies, high cost and bureaucracy typically require patients to become both the project and the project manager. My goal of rehabilitating my body so it could function as it did before disability was narrow and unfair. Sex only mattered if it helped my body work. “I see this in a lot of my clients, especially Bipoc children of immigrants,” said Gabriela Fullon, a licensed mental health counselor. “Enjoyment must be deserved. It is only something you are allowed to have if you work your ass off for it.” These capitalistic norms particularly do not permit pleasure for disabled people. “The idea is that our lives should be focused on treatment, cure and management of disability – above all else,” said Sami Schalk, PhD, a disability and gender studies scholar and author of Black Disability Politics. “That pleasure only comes into our lives when it is therapeutic. That pleasure must somehow move you towards able-bodiness or able-mindedness in some way. But can’t we just make art for the sake of making art? … Can’t we fuck to fuck?” In theory, absolutely. But in practice, did I? I’m not sure I’ve completely forgiven my body for growing something that hurt me. I punished my body into repair, which is not the same as healing. I spent years believing the more embodied, sensual version of myself had to die as the price for survival. I am not alone. Pleasure is not recognized as important within the US healthcare system, which prioritizes reproductive sexual function. This makes accessing sexual healthcare especially challenging for disabled people, cancer patients and survivors, postpartum parents and others whose bodies start behaving in unexpected and inconvenient ways. “There is no standard sexual health curriculum in medical schools,” said Sonjia Kenya, PhD, sexologist and professor at the University of Miami school of medicine. This means that physicians like Ruppert or providers like Smith, Fullon and Kenya are not default care options. Their open, informed and non-judgmental approach to sex are only available to patients who know enough to seek them out. In a 2013 survey of OB-GYNs, only 29% reported asking patients about sexual satisfaction. If they don’t ask, who does? “The system is supportive of men’s sexual functioning,” Kenya said, reminding me that more than 80% of women do not experience orgasm through penetration alone. Conversely, “insurance won’t even cover menstrual supplies”. Even the most competent healthcare providers are constrained by an immoral (my word), fragmented (Kenya’s word) healthcare system. Patient access to services, including sex therapy, largely depends on insurance reimbursement and billing: “Is it general medicine? Is it psychology? Do you need a diagnosis before you can get treatment?” said Kenya. These providers want change. Ruppert helps medical residents to practice talking with patients about sex. Kenya said more physicians should expand their referral networks to include providers who can better address sexual health needs. But in the meantime, patients must self-advocate. If you don’t know how to address concerns about sexual pleasure, Kenya suggests that if or when a provider asks whether you are sexually active: “You can say: ‘I do not enjoy sex.’ That should encourage the provider to go a little deeper and ask the next question, or refer you to someone else.” Support for our sexual health also exists outside a doctor’s office. As Schalk reminded me, those “institutions are not focused on our pleasure. They are focused on activities of daily living and survival in order for you to be a productive citizen.” So we must reckon with our relationship to sex ourselves. As a starting place, Fullon suggested some simple curiosity, saying: “What about pleasure feels scary? Why? How do you feel about that? Do you want it to shift?” Instead of asking myself how to have sex again, I began asking myself why. Why was sex important to me? Who and what is sexual pleasure for? I sought out books and podcasts about disability, and community with other disabled women of color who affirmed that my post-operative struggles with sex and feelings of undesirability were normal. I began to question harmful narratives, like why women are taught to tolerate painful sex and that our pain is necessary for someone else’s pleasure. They are so normal that when women experience these things, we feel we are the ones doing something wrong. My experience with disability actually required me to understand my pain, not ignore it. My spinal cord injury is invisible to others now; I no longer need a wheelchair or a cane. But this intimate, informed relationship with my body has made me more confident in communicating what I need. For example, I shared details about my spinal cord injury with the last guy I dated. During sex, I worried that my needs would offend him, and I felt comfortable enough to share those anxieties. “There is nothing about how your body responds to me that makes me question whether we’re having a good time,” he said. Prioritizing intimacy over intercourse made sex more pleasurable. Audre Lorde presented her groundbreaking essay Uses of the Erotic: The Erotic as Power, in 1978, the year she received her first cancer diagnosis. That Lorde’s cancer coincided with her scholarship on the erotic challenged me to rethink pleasure for pleasure’s sake. “[The erotic] is an internal sense of satisfaction to which, once we have experienced it, we know we can aspire,” she wrote. “For having experienced the fullness of this depth of feeling and recognizing its power, in honor and self-respect we can require no less of ourselves.” The erotic teaches us that we deserve, and must fight for, deep joy and satisfaction in every part of our lives. Pleasure is political, and provides the vitality I need as a disabled woman of color to believe I can do more than survive. I don’t accept a culture that ignores women’s sexual pleasure or believes disabled people shouldn’t have it at all. A pleasure-filled life can be lived with or without sex, with or without a partner, and alongside disability and pain. Schalk suggests keeping a pleasure journal as a way to “comfort and care for our bodies, even in the midst of hard moments”. I took her advice. This summer, I did not find the fling I hoped for, but no matter. I went outside, blasting Beyoncé down the freeway – as she sings in Church Girl, “I’m gon’ let go of this body, I’m gonna love on me.” I practiced the choreography from Janet Jackson’s Pleasure Principle music video in the park. There I heard Schalk’s words echo in my mind: “Pleasure is what brings us back to ourselves.” - Jodi-Ann Burey is a writer, speaker and author of Authentic: The Myth of Bringing Your Full Self to Work