A decade-long journey through misdiagnoses, a terrifying spinal tumour, and the painstaking rediscovery of pleasure has prompted one writer to question why society — and medicine — treats sexual fulfilment as a luxury rather than a fundamental human need.
Jodi-Ann Burey spent years dismissing what turned out to be far more serious than tennis elbow. The pain migrated, her grip weakened, her legs grew unsteady. When an MRI finally revealed a tumour growing inside her spinal cord, one surgeon warned she could face permanent paralysis from the neck down within a year — or never walk again if the operation went wrong.
Against medical advice, Burey postponed surgery for five weeks. She needed time to grieve, to arrange her affairs, and — crucially — to squeeze in one last snowboarding trip to Chamonix-Mont-Blanc. “My immigrant sensibilities would not let that money waste,” she writes.
Racing Against the Clock
Those five weeks became a catalyst for living at full tilt. Burey, then newly matched on a dating app with a man named Nicolas, invited him over hours before catching a flight to New York for pre-operative appointments. He arrived. She packed. He de-pilled her favourite cardigan with a fabric shaver. They talked until her cab to the airport arrived, and the kiss goodbye, she recalls, “lingered like we’d never say hello again.”
When a surprise job interview pulled her back to Seattle days later, Nicolas asked her to be his girlfriend. Days after that, she was under the knife.
The operation was a success. What followed was three weeks of inpatient rehabilitation: relearning to walk, to grip, to exist in a body that no longer obeyed. By night, she told herself she was simply a woman on the phone with her boyfriend. Nicolas and she dreamed of sailing beneath open skies. He told her that one day she would sit on his lap in his wheelchair.
But in the small hours, grief crept in. She regretted that she and Nicolas had never been intimate before her body changed. Was she now too broken to please him? Too numb to be pleased? Her sisters had taken to calling him Santa — short for Saint Nick — because, she wondered aloud, “who but a saint could desire me as my desirability faded?”
The Medical Blind Spot
Burey’s experience exposes what she argues is a gaping hole in healthcare: the chasm between being alive and feeling alive. Medics, she says, are trained to celebrate survival. Pleasure, by contrast, is treated as a frivolous extra — if it is considered at all.
Dr Lisa Ruppert, a physiatrist and spinal cord injury specialist at New York’s Memorial Sloan Kettering cancer centre, walked Burey through the basics. Ruppert explained that spinal cord injury brings a cascade of sensory disorders: temperature dysregulation, heightened or dulled sensitivity to touch, bladder and bowel incontinence, and sexual dysfunction. She suggested leaving lights on for visual stimulation, staying on top of the sheets to manage sensory overload, and mapping out where — and whether — erogenous zones had shifted.
Sexual arousal, Ruppert explained, runs on two distinct tracks. There is reflexogenic arousal, triggered by physical touch, where signals travel from the genitals to the spinal cord to produce lubrication or erection. Then there is psychogenic arousal — the sort ignited by fantasy, thought, sound and scent, with no contact required. Understanding the difference, Burey writes, was revelatory. “Able-bodied people don’t often think about how their bodies work,” she observes. “Not until my spinal cord injury did I ever consider the mechanics of sexual pleasure.”
Nicolas, she says, became as attuned to her body as any clinician. They played sensory games. Then those games began to feel like rehabilitation. Dates were squeezed between physical therapy, occupational therapy, aqua therapy and talk therapy. After the couple split, Burey resigned herself to what she calls “a medicalised, dissociative relationship with my body.”
When Intimacy Becomes a Project
It was that word — “project” — that eventually unlocked something for Burey. During a session with Rachel Smith, a licensed marriage and family therapist specialising in sex therapy, she caught herself describing post-surgery sex as a project, laden with the productivity-driven baggage of millennial hustle culture.
Smith’s response reframed everything. “But what if pleasure became an exploration?” she suggested. “Something to be discovered versus something to work on.”
The shift in thinking pushed Burey to interrogate the broader cultural permission structures around enjoyment. Gabriela Fullon, a licensed mental health counsellor, put it bluntly: “Enjoyment must be deserved. It is only something you are allowed to have if you work your ass off for it.” For disabled people, that bargain is even harsher.
Sami Schalk, a disability and gender studies scholar and author of Black Disability Politics, was more lyrical. “Can we just make art for the sake of making art?” she asked Burey. “Can’t we fuck to fuck?”
A System Built for Survival, Not Satisfaction
Pleasure, Burey discovered, is barely on the healthcare radar. Sexual health, where it exists in medicine at all, tends to focus narrowly on reproductive function. Dr Sonjia Kenya, a sexologist and professor at the University of Miami school of medicine, told her that there is no standard sexual health curriculum in medical schools. A 2013 survey of OB-GYNs found that only 29% routinely asked patients about sexual satisfaction.
The disparity is stark. Insurance, Kenya pointed out, routinely covers erectile dysfunction medication for men, yet “won’t even cover menstrual supplies.” More than 80% of women do not reach orgasm through penetration alone, statistics that highlight how narrowly female pleasure is understood — or funded.
For Burey, who holds a master’s degree in public health, the realisation that sex therapy could have been a routine part of her post-operative care arrived only while researching the very subject she had lived through.
Reclaiming the Erotic
Recovery, Burey writes, was not a single triumphant arc but a series of small, often unglamorous reckonings. She sought out books and podcasts on disability, and found community with other disabled women of colour who confirmed that her struggles with desirability and intimacy were not personal failures but systemic ones.
The dating experiences that followed were tentative, occasionally bruising, occasionally tender. With one partner, she shared the details of her injury and her anxieties about it. His response — “There is nothing about how your body responds to me that makes me question whether we’re having a good time” — helped her reframe what intimacy could mean. Prioritising closeness over intercourse, she found, made everything more pleasurable.
The writer Audre Lorde, who delivered her landmark essay *Uses of the Erotic: The Erotic as Power* in 1978 — the same year she received her first cancer diagnosis — has long insisted that pleasure is not a luxury but a form of political resistance. Burey has come to agree. “The erotic teaches us that we deserve, and must fight for, deep joy and satisfaction in every part of our lives,” she writes. “Pleasure is political, and provides the vitality I need as a disabled woman of colour to believe I can do more than survive.”
This summer, she did not find the fling she had hoped for. She went outside instead, Beyoncé blasting through the car stereo. She practised Janet Jackson’s Pleasure Principle choreography in the park. She started a pleasure journal. The fling, she concludes, can wait.
Why it Matters
Burey’s story lays bare a quiet crisis at the intersection of medicine, disability and intimacy: the systematic erasure of pleasure from post-operative and chronic illness care. With more than a quarter of adults in the UK living with a disability, and cancer survival rates climbing, the gap between surviving and thriving has never been more urgent to close. If healthcare systems continue to treat sexual fulfilment as a postscript — something to be addressed only when a patient is brave or lucky enough to raise it — millions risk being left to navigate one of life’s most fundamental sources of connection alone. Redefining pleasure as a right, not a reward, may be one of the most radical acts of recovery there is.
