I was forced to examine the idea of sexual pleasure after a tumor was removed from my spinal cord
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.
