Immediately after her head hit the bottom of the pool, Rachelle Chapman realized she couldn't move. It was May 2010, the night of her bachelorette party, and one of her friends had pushed her into the water, like friends horsing around sometimes do. But in a freak confluence of angles and physics, Chapman didn't just get drenched—she broke her neck, suffering a permanent spinal cord injury (SCI) that left her a quadriplegic with no feeling below her collarbone.
Chapman, then just 24 years old, spent her first moments in the hospital processing the fact that she'd almost certainly never be able to walk again. Then she came to grips with what it means to have no control of your fingers, and at best a limited ability to manipulate your hands. But soon enough she started to dwell on what this injury would mean for her sex life.
"I was like … am I ever going to feel an orgasm again?" recalls Chapman. "Am I going to enjoy sex when I do it, even if I figure it out? Is it going to feel like nothing for me?"
To some, Chapman's deep and early concern about her sex life may seem odd. Many of us tend to think about life after a serious disability solely in terms of recovering basic functions like mobility. Sex and sexual pleasure can seem like secondary indulgences to consider down the road. But according to Bill Fertig, the manager of the United Spinal Association's Resource Center and himself a man with an SCI, Chapman wasn't alone in her early concern.
"There's no one that I talk to that does not recognize within a day or a week that the loss of sexuality and being able to express one's self sexually is paramount," he says. "It really comes above, 'will I be able to return to work?'"
"I think a lot of people in wheelchairs, they would choose to have sexual function [and sensation] back before walking," Chapman says. "For someone like me who's a quadriplegic, it's a toss-up between hand function and sexual function [and sensation]. But those make the top of the list before a lot of the functions that people would think are most important."
Chapman, like many who suffer a major disability, can physically have sex. Some people involved in her rehabilitation helped her work out the logistics of it all—assistance not everyone with an SCI gets. They also helped her discover new ways to feel arousal and pleasure, through the eroticization of her neck especially, gradually learning to look for and hold on to the pleasurable sensations there that get backgrounded for most of us by what's happening with our genitals. And the very act of having sex still excites her, even if she can't feel it in the same visceral way.
"Your brain still feels stimulated," explains Chapman, "because a lot of sex is signals sent to your brain. And you get endorphins. And it feels good," she says, if you know what to focus on.
Now, though, sex has to be planned, not spontaneous. And while it can still be pleasant, and theoretically many people can physically orgasm through muscle reflex that doesn't require sensation, it's different. Chapman says she can't really climax anymore, at least not in the way and to the level that she used to. It weighs on her and her relationship with her husband, who stayed with her after her pre-nuptial accident.
Spinal cord injuries can't be healed. Chapman hopes technology will someday advance far enough that she'll be able to regain her old sensation and mobility, sexual and otherwise. For now, though, she and many others believe there's nothing they can do but accept limitations, embrace new modes of sensation and function in their everyday lives, and push forward.
Soon, though, at least some women with SCIs may no longer need to just accept their new sexual reality. In January, Max Overgoor, a 52-year-old plastic surgeon in the small Dutch city of Zwolle, 50 miles east of Amsterdam, will perform an operation that may help a woman with an SCI regain sensation in her clitoris and the opening and first few inches of her vagina by essentially hotwiring the nerves that control sensation in these areas around her spinal injury.
This may sound like breaking science, but it's not. The surgery's core technique has helped people with spinal cord damage regain sensation or function in many body parts for decades. Yet this knowledge wasn't applied to restoring genital sensation until Overgoor took up the idea about ten years ago. Even then, it was only after dozens of procedures on men over fifteen years that he got around trying out sensory restoration in a woman's sexual organs.
The long delay in bringing these techniques to penile, then clitoral and vaginal, sensation is in part an artifact of the usual limited attention, funding, and manpower afforded to small and thus often neglected populations. But it also reflects a longstanding reticence in the world of SCI treatment to tackle sexual sensation, a topic seen as taboo and inconsequential—especially for women—when compared to restoring raw functionality in, say, a patient's legs.
Overgoor calls his procedure Tomax, a contraction of the phrase to maximize sensation. Tomax isn't capable of restoring genital sensation in everyone with spinal damage. Instead, it targets people with lower spine injuries, who have no sensation in their sexual organs, but can still feel their inner thighs thanks to the fact that the nerves controlling that sensation actually enter the spinal communication system a bit higher up. (To wit, it won't directly benefit Chapman or other quadriplegics with upper spine injuries.) Over the course of a 90-minute surgery, Overgoor basically takes the nerves from the network serving one of a person's inner thighs, severs them, and reattaches them to the nerves from one side of the genitals, rerouting signals from the sex organs through a still-functional neural pathway. (Rerouting both sides could interfere with the reflex reactions that control some erections and orgasmic contractions.)
The procedure restores sensation of some kind in 80 percent of his patients. Still, at first the brain isn't sure how to process this, so when you touch the sensitive bits of patients' genitals after Tomax, they'll feel it as a tingle in their inner thighs. But in 50 percent of his patients, Overgoor says the brain eventually re-programs itself to allow sensation in the genitals. It's not exactly the same level or type of sensation as many had prior to their injuries. But half of his patients report major improvements in their sex lives.
"Patients started to masturbate, which they didn't do before," Overgoor says. "Some patients had an orgasm for the first time in their life. Some patients felt in intercourse with their partners that there was, well, extra sensation." Another patient tried to put it on a scale for Overgoor: Before his injury, he gave his sex life a ten. Afterwards, he gave it a four. But Tomax got him back up to an eight.
Re-routing nerves isn't a new achievement. Surgeons have been bypassing spinal injuries in other nerve pathways for about a century now. Overgoor had plenty of experience with rewiring nerves as a reconstructive hand surgeon, getting dysfunctional digits to work again. It's just that no one had thought to re-route between the inner thigh and the genitals.
The idea came to Overgoor by chance around the turn of the millennium when a urologist mentioned that patients with spina bifida—a birth defect in which the spine fails to fully develop and close, causing paralysis below the affected point a bit like a general spinal cord injury—would start to think about sexuality, realize they'd never had genital sensation, and feel frustrated. "I said, 'well, in plastic surgery we always operate with nerves,'" Overgoor recalls. "'Maybe we can find a solution.'"
There weren't many candidates for the procedure Overgoor developed in the Netherlands. The nation sees about 110 babies born with spina bifida and 150 people suffer a spinal cord injury per year, only a fraction of whom are injured at the "right" point on their spine for Tomax to work. But amongst that population, demand for the procedure was substantial: Overgoor has performed it 65 times over the past fifteen years on men alone. And he's likely to see increasing demand as in early 2015, the penile procedure was approved as a standard Dutch medical practice.
Once the procedure was well-established, he started to see demand from abroad. A team at the University of Washington in Seattle invited him to bring Tomax to the states via a successful surgery on a spina bifida patient in late 2009. (America sees 10,000 children born with spina bifida and 12,000 new spinal cord injuries, usually sustained by young, virile people, per year. Up to 166,000 people in the nation live with the former and about 300,000 with the latter condition.) He's also brought Tomax to Belgium and Switzerland, in both cases at the invitation of eager local surgeons.
In some cases it's understandable that the medical community has largely ignored sexuality in paralyzed people: Spina bifida patients long had shorter life spans due to bladder and bowel control problems, hydrocephalus, and a host of other complications. "We're just seeing the first generation [regularly] getting to adulthood," Clair Yang, a urologist involved with the University of Washington Tomax procedure, says. So it wasn't until very recently that doctors could actually take time to focus on sexual function, much less sensation, amongst them. In other cases, like some SCIs, the focus on restoring function in hands or feet is ostensibly based on the assumption that these are the interventions needed for folks to best function in life.
In still other cases, though, Fertig suspects that it also stems from a widespread view that people with disabilities are asexual beings who wouldn't be interested in, able to have, or desired as partners for sexual encounters. It's a notion that gets baked into us, he argues, through media depictions of sex as something primarily open to and enjoyed by lithe 20- or 30-somethings. Facing this assumption repeatedly in daily life, Chapman decided to fight back against it last summer by doing a photo shoot, explicitly sexualizing her disabled body.
This functional focus long meant that when doctors did address sexual organs and sexuality in people with spinal paralysis, "it was all about [explaining] ways you can have sex or can get pregnant," says Fertig. Because the majority of men with spinal issues can still achieve an erection and ejaculate as a reflex, and most women can still carry children and give birth—including Chapman, although she chose to have her first child a year ago via a surrogate—that put little impetus on jiggering around with nerves. Some folks developed vacuum tubes and injections to aid in achieving or sustaining erections. Fertig recalls, after he suffered his own SCI in a motorcycle accident 16 years ago, being shown a video on how to physically make sex work with paralysis. But there was little focus beyond making sure the blunt mechanics of sex worked. Even now, insurers often initially treat procedures focused on sensuality as almost cosmetic—secondary to functionalones.
"[Caregivers assumed] you were going to get some pleasure out of the fact that you could physically have sex," says Fertig. "But there was absolutely no addressing of sensation."
But Yang points out that there's a strong body of animal research going back to the 1960s and human research back to the 1980s demonstrating the integrity of sensation to sexual function. And beyond its role in sexual mechanics, genital sensation is also far more important to overall mental wellbeing for many people than the existing functional focus seems to acknowledge.
Even in spina bifida patients, who might not have as much of a sense of loss as SCI patients since they never had sensation to lose, establishing genital sensation can vastly improve one's life by creating a newfound sense of connection to one's body, explains Yang. "Imagine if your right arm was completely numb and without sensation," she says. "Your arm would have as much connectedness to you as the chair you are sitting on. So penile sensation allows men to feel ownership of their body, which is extremely important," she adds, beyond sexual pleasure or function.
A host of roadblocks long prevented these issues from receiving their due. Patients rarely bring up concerns about genital sensation, so there's little impetus on physicians or surgeons to address the issue. But that's in large part because patients might think there's nothing to be done or might be too nervous to ask if a doctor doesn't bring it up first. And when doctors did focus on the issue, for a long time they lacked the tools to do anything. Until 1998, when Yang co-authored a paper on the subject, no one had actually definitively dissected and mapped out the neural anatomy of human genitalia—and that knowledge took time to hybridize between the urological circles that pioneered it and the neurosurgical circles with the skills to practically apply it.
Fertig, who's pretty bullish on the general widening of conversations on sexuality and sensation amongst SCI patients, admits that there seems to be far more focus on men than woman in this field. Chapman confirms that when she seeks out information on SCI sites, "there is more information on male sensation and how to improve it than there is for women."
Some of this, and Overgoor's 15-year delay in applying Tomax to female patients, stems from pure demographics: men are four times more likely to suffer an SCI than women. Some of it has to do with the fact that we understand less about the physical bases of female genital sensation than male—and what we do understand shows us that it's more complex. Overgoor's confident in his ability to use the same procedures on the shorter and thinner nerves of the clitoris and vagina, but Yang, one of the first people to map those nerves, suspects it might not be so easy.
Overgoor's upcoming surgery on a female patient definitely can't shift a systemic imbalance of focus on male sexuality and sensation in the medical world and beyond. It probably can't even shift focus within the SCI world, given what a small sub-section it serves, and the fact that while its reach is growing, it is still a new and relatively experimental procedure.
Yet the fact that Overgoor is expressly concerned with making sure female patients get the attention they deserve does reflect a slow and gentle shift in focus. And the publicity around the procedure within the SCI community may help some doctors recognize a need they haven't been serving—and encourage patients to push for options they might never have known existed. Thomas Landvey, another doctor involved with the University of Washington's Tomax procedure, recalls that after they performed their first operation, their team saw a stark increase in the visibility and requests of spinal-related paralysis patients looking to explore the procedure or genital sensation in general. At the very least, if the upcoming procedure goes as planned, it will open the door for perhaps hundreds of women with no genital sensation to restore their sense of ownership over a vital part of themselves, and to renew a level of sexual satisfaction. But hopefully it will also incentivize a continued push towards greater respect and service for sexuality and sensation amongst individuals of every gender identity with SCIs or spina bifida. Either way, it'll be a seminal advancement that we probably should have seen long ago.