About 12 years ago Peter Anziano, then in his 30s, took a spill while driving his motorcycle down a North Carolina road. He fell off his bike, into a water channel off the shoulder, hitting a rock about eight feet down. Anziano tried to stand, but he couldn't move. He had an immediate inkling of what had happened. But only in the hospital did he learn he'd suffered a spinal cord injury (SCI) at his ninth thoracic vertebra, permanently impairing him from the waist down.
"Learning that I was never going to walk again was very devastating," he says. "But learning that my bladder, bowel, and sexual function were going to be impaired was an even heavier blow."
Sex is one of the first things many think of after sustaining such an injury, according to Bill Fertig, who directs the United Spinal Association's Spinal Cord Injury Resource Center and lives with a complete injury at his seventh thoracic vertebra. Anziano's marriage eventually dissolved in large part, he says in retrospect, due to his trouble navigating sex and intimacy after his accident.
This grim sexual trajectory is what America expects from people with spinal cord injuries. Often perceived as desexualized beings—even when depicted with desires. In pop culture, they're usually shown as incapable, tormented, and just lesser. But Anziano, now a peer support liaison at Atlanta's SCI research and rehab-focused Shepherd Center, didn't stay sexless and stressed. Years of experimentation, he says, has made his sex life "better than it used to be. It's different. But… it's more rewarding." And he believes that it's mutually appreciated by his sexual partners.
Many people with SCIs or other paralyses affecting their sex lives eventually find they can have pleasurable sex lives—even orgasms—without the use or feeling of their genitals. Sometimes, they say, their new sexuality is even more fulfilling than before. This isn't a special ability open only to those who've lost another type of feeling, like a sex Daredevil thing. Necessity merely forces them to attend more to and draw more from sensations and aspects of sensuality most of us usually ignore.
The fact that men make up the vast majority of SCI patients, coupled with cultural taboos on engaging with female pleasure, means that we know and hear a lot more about how men access these new realms of sensation than women. Yet while there are differences between female and male sexuality and sensation, women with SCIs have discussed similar experiences and used similar tactics to those described by the men quoted in this article, suggesting that they are broadly applicable across genders.
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There are no hard and fast rules for people trying to navigate their sexuality after an SCI; every injury affects a different spot on the spine to a different extent. Even people with similar injuries experience idiosyncratic symptoms. But 80 to 90 percent of those with SCIs experience some kind of change in their sexual functionality and sensation. Between that, mobility issues, urinary and bowel incontinence, and risks of dangerous blood pressure spikes during the act, sex after an SCI is unpredictable to navigate. Sexual education in rehab centers has improved over the last two decades, Fertig says, but that only goes so far, and is only available to so many.
Some people are so frustrated, Anziano says, speaking from his experiences in peer support, that they "will just never have another sexual experience again." But as Fertig says, "sexuality's just a huge part of who humans are." The majority of people who sustain SCIs are young men in their sexual prime. The will to restore a sexual self drives many to realize that they'll have to open themselves up to experimentation. Some start testing new experiences or techniques in rehab, Fertig says.
Often the first step to finding new sexual sensations for people with an SCI is acknowledging the role that pain, stress, and internal mental blocks can have on human sexual experience. "The mind is very powerful and it can block [erotic] feelings in the moment," says Mitchell Tepper, a sexual educator and author of Regain That Feeling, a book on sexual experience for those with SCIs. Tepper broke his neck at age 20.
From there the goal is often to slow sex down, throwing away any patterns or preconceptions about when something should happen or how something should feel and instead focusing in on what their bodies are intrinsically able to do and feel. For people with reduced or nonexistent genital sensation, that often involves learning to attend to new senses or zones of stimulation.
"I think everybody gets tickly on their neck when a finger or a subtle breath runs along their ear," Anziano says. "It does stimulate the sexual function part of our brain." And it can come through other areas of the body less frequently associated with erogenous activity than even the ear or neck as well—the area above an injury is often especially sensitive and eroticizable.
This might not seem satisfying to those with fully functional genitals. But Tepper notes that even patients who only use these sensations report full satisfaction. Some say the sensations can get so intense if attended to properly that they experience orgasms. They may have a different flavor, if you will, but the intensity is equal. The medical community long discarded this as "phantom orgasm," but scans now suggest what's happening in their brains looks basically like any other orgasm. This leads Tepper and others to believe that orgasms are essentially a sensory overload: Enough of any pleasurable stimulation, embraced and followed without expectation, can tip you over that edge.
A few patients even claim pure fantasies, with a partner or solo, can get them there. But these new stimulations, especially purely mental ones, require more time and focus than most genital pleasure. "You need to stay in the moment and accept those pleasurable feelings," Tepper says.
Discovering new sensory inputs and playing with contexts, positions, and other factors to build new sexual lives after an SCI (or in general) hinge on building enough trust and vulnerability to experiment and communicate freely with partners. Tepper finds that his patients tend to achieve their peak sexual experiences after injury with people they felt trust and safety being with.
This might seem simple. But as Fertig points out, for many people it's harder than it sounds: "Let's say you [and your partner] were young and healthy individuals. You never really had to think about [sex] so much" before an injury, he says. "Let's say most of your sexual interactions were subconscious and you never really had to overanalyze it. But now that you're injured, you have to communicate a whole lot more [than you did]."
Anziano's experience pushed him explore his own sexuality anew, "probably in a more comfortable manner than I did when I lost my virginity," he says. It also gave him a new sense of freedom, once he accepted his body for what it was, to break away from the sexual norms and hang-ups that he'd picked up as an American man. He started feeling more comfortable negotiating sex with his partners rather than just going through it on a script. "I was able to find my way back to a fuller sexual experience," he says, "by allowing things to happen rather than forcing things to happen."
Tepper believes there's a lot able-bodied people could learn listening to stories of those with SCIs. He recently hosted a talk entitled "You Don't Have to Break Your Neck to Be A Great Lover, But You Could Learn A Lot from Someone Who Has." Non-disabled people could also use his lessons for his patients with SCIs—like a tutorial on how to slow down sex and explore their bodies by gradually testing different sensations on every part of their body for pleasure. He's just not sure what it will take to get able-bodied people, immersed in a culture that often denies the sexuality of disabled people, to sit down and give him or other men with SCIs their attention. "It just takes that courage to take the first step," Anziano says.
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