SCI Forum Reports
Sexuality and Dating
October 2, 1996
Soon after injury, people tend to socialize with 'familiars' -- people they knew before their injury or people they met during their rehabilitation, said Steve, a panelist with with SCI at level T2. In his own case, he said, these friends "knew me from before, and they knew I was the same person, and they kind of assured me that I was the same person."
The panelists agreed that such reassurance helps lay the groundwork for going out into the world as a person with a disability. "In a wheelchair, you're a phenomenon," Steve said. "I roll in and the show begins. At first that made me very uncomfortable, but later, I saw that it presented possibilities."
"You're just more memorable, more in the spotlight," agreed Louisa, who has a T7 injury. Louisa's first boyfriend broke up with her after her injury because she was not a "whole person." After that, she said, "I didn't date for two-and-a-half years." Today, after going to college and having a successful long-term relationship, she has learned that there are many people who don't care about her disability. In fact, she herself keeps it firmly in perspective: "I would rather be in a wheelchair than in a lot of other people's experiences."
Shortly after her injury, Louisa said, someone told her, "there are a lot of things you can't do now." Her reply was succinct and unprintable. "I go out dancing," she said. "It pisses me off when people say, 'oh, you're so brave!' I say, 'but I've got things I've got to do. I've got soul. I've got to dance!'"
"You become kind of an extrovert," Steve said. "You're desensitized (by all the attention), so I think that having a disability kind of gives you an edge." The panelists all agreed that communication is essential in sexual relationships after SCI. "The person with the injury needs to take that responsibility," said Nick, who has an incomplete C4-6 injury, "and let the other person know what they need, what to expect."
"It's tough," he added. "You're opening yourself up--wide open--and a lot of people aren't comfortable with that. But if you're going to be in a relationship, that's what you've got to do."
"I agree," said Ahmit, who has a C7 injury, "but don't tell them everything up front, because you're going to scare them off. I think it's important to understand where you are in the relationship." Steve said the trick is to feed the information to your partner at the right speed, and to package it in an interesting way.
"Steve is a big talker," said Beth, his wife, "and before our first kiss, he told me how it was going to be." When they made love, she said, "it was slow, and he really talked me through it. I don't think he showed me his condom catheter or anything like that...he left clothed and came back naked."
"You're just as sexual (as before your injury)," Steve said. "You think the same thoughts, the same things excite you. But your level of expression has to change. Some of the style that I had before the injury just didn't work (afterward)." When he first started dating, for example, he walked with crutches, "because I felt like you have to 'stand tall'. And I fell down a lot." Beth said she was uncomfortable when Steve used his crutches because he was slow and she was afraid he would fall. "I felt much better when he switched to his wheelchair," she said.
When asked how sex has changed for them after SCI, the panelists said they have to do more planning and be more creative. "Spontaneity is difficult if you want to have full intercourse, but there are other things you can do that are sexual," Ahmit said.
"Your other senses are amplified," Louisa said. "Just things like running your finger slowly over someone...maybe they've always been there, but after your accident, you're more interested in them. And sometimes, not having sensation, it can be a comfort that somebody who cares is there and having a lot of sensation."
At first, Ahmit said, he was obsessed with satisfying his partner, which "really bugged some people." Now he has become more interested in enjoying the experience himself as well. Many people with SCI have areas above the injury that are very sensitive or that have different sensation, Steve said. "The brain remaps itself after injury. It's exciting because it's kind of unique, and it's kind of a secret that you share with your partner."
And although orgasm may not be as easy to achieve or occur as often as before the injury, Steve said, it can still be an important part of the sex experience. "An ejaculation of a spinal man with a high lesion is a big event," he said. "It's very good if you have spasticity, because it kinds of flattens it out for four to five hours."