The process of sexual self-discovery starts with the realization that sexual response after injury will not be the same as it was before. Being sexual becomes differently defined than it was by the “normal” ways that we learned first. Life experiences either led participants to the belief that pursuing sexuality was “pointless, so why bother,” or inspired them to explore their sexual potential despite the perceived limitations. Peak sexual experiences happened within the context of intimate relations with a trusted sexual partner with whom they felt emotionally safe. A sense of connectedness was the key to experiencing pleasure and orgasm again.

Stories of Sexual Healing

Greg

A Jewish man with a T12 incomplete spinal cord injury, Greg was 43 at the time of our interview. He had no movement from his midsection down, but he did have some spared sensation. He was injured at 18. Greg had been married and divorced since injury, and he was single when we talked:

My original rehab doc told me I could not have “emissions.” Twenty years later, I had a spontaneous ejaculation watching an adult video. That made me reconsider what the doctor told me. It showed me that maybe my body is something I have to explore. It reopened the case. I began [experimenting] with masturbation [again] … I was less willing to give up, and more resilient against the doubts.

Around the time of his initial rehabilitation, Greg had real worries about being able to satisfy a life partner:

I thought in terms of wanting to find somebody to marry. So I had struggled with doubts about that. About if somebody would stay with me if I couldn’t fuck in a normal way. Also, I hadn’t yet developed a taste, so to speak, for oral sex, and I wondered if I would ever enjoy that. Giving was attractive to me. Receiving seemed pointless.

He reported that he’d remained conscious of himself as the same sensual person as he was before his injury. He was still very much into kissing and touching. I asked him how he made sense of the initial changes in his sexual function:

I believe that it was just physiologically changed as a result of the injury, and that my body was not capable of masturbation, meaning ejaculation, which for me meant, why bother?

Eventually, some 20-plus years post-injury, he met a partner with whom he was able to access his full sexual potential:

I’m very in tune to her responses, I really enjoy connecting with my partner and sensing what she’s feeling and experiencing. I’m also really into the sort of evolution of the process. I think of it like music. I think of it like gospel. Have you ever seen gospel? They start really slow and easy and they let the spirit take them. And so I think of it as a facilitating experience for my partner. I like to start by not going right to the center … I start slow and then I build up. It becomes more intense. … The intensity is through my connectedness with my partner. … It’s about being aligned in this. It’s sort of a sensual dance … I find that I have the ability to be aware of my partner’s responses and those are arousing for me. What do they call it when you get behind a big truck on the freeway, when you get pulled along? Drafting … I sort of latch onto their orgasms. If I can’t have it fully myself, then I’ll sort of share it with them … I’m very invested in my partner’s orgasm … I think a lot of sexual response just comes from the sheer energies that come out of just being with a person.

This drastically improved his sexual esteem:

My relationship with her, far and above, without question, has been the most sexually satisfying and affirming of my life. I don’t have any doubts now about my confidence sexually and I feel like I really know my body and its responses very well. I know what I can and can’t do. To me, the relationship with her just clarified everything. There was never a moment’s doubt about satisfying her. It was a really deeply loving, strong and wonderful relationship. We’re not together for lots of other reasons that have to do with our lives, not to do with not loving each other or not being good partners sexually.

With regard to his sexual future, Greg shared:

It feels like it’s going to be very hard to aspire to that level but on the other hand my experience proves to me that it was there and that it’s evolutionary. I also got to clear away a lot of my other psychological drek. If anything, I’m more involved and therefore, more capable and more attractive.

Patti

A Native American, raised Catholic, practicing psychic spiritualism, Patti was 45 at the time of our interview. She has a C6 complete motor injury resulting in limited use of her wrists, hands, and fingers with limited sensation.

Her story introduces a feminine perspective, and details her level of disgust with her post-injury sexuality, followed by her quest to reclaim it.

I interviewed her 17 years after her injury. She was married, but had separated from her husband. Her peak sexual experience, including an extended orgasm, had happened during a recent fantasy. She reported experiencing orgasm about 10 percent of the time, and described herself as sexually curious both before and after injury.

Patti had hated her sexual self. For the first two years following her injury, she completely neglected her sexual challenges and just dealt with what she knew she could handle: working out, getting stronger, and getting out of the hospital to try the skills she’d learned so she could take care of herself. As she mastered her daily routine, she began to miss her sense of femininity and sexuality.

So, she turned to local sexuality courses, as much to satisfy her curiosity as anything else. She’d paid little attention to her sexuality, and hadn’t had a sexual partner, ever since her injury:

I got information. I talked a lot … when I realized that I was mourning what I perceived to be the loss of my sexuality. I remember drawing this orgasm, and I thought, oh this is a kick ass orgasm, man! And I looked at it and I thought to myself, you know, I’ve cheated. I’ve lied. I’ve faked orgasms … but I’ve never faked an orgasm on paper, or lied about one on paper. I crumpled [it] up, and I threw it away. I drew my baseline, and then, up above it, I drew another one that was completely parallel, which suggested that there was no orgasmic response whatsoever. And I turned that in, because I had not masturbated. I had not done anything, absolutely nothing.

I knew then my level of disgust with myself. That’s what gets me in gear. For me, that was a real turning point. I just knew then that in order to change, in order to experience growth and to deal with issues around sexuality, it would take change, and change is painful. I was praying, “please give me the strength to make it through this experience, to tread on and to search, and to look into these issues.” I was scared.

Her first attempt to masturbate was unsuccessful:

I felt like a failure. I can’t even masturbate. What can I do?

She didn’t want to give up. But for a few years she felt like Greg had: “Why bother?” She put up attitudinal barriers to intimacy, and hid behind a wall of emotional protection:

Don’t fuck with me. Don’t mess with me.

To reach her breakthrough, she had to let go so she could move beyond her comfort zone:

Not knowing, wanting more, and knowing that it was out there, and that I was capable of all these things, [but] being really scared because growth is so painful. Change is painful. I was comfortable there but I was unhappy. … It’s taking the step to make a change.

A man she met at a track meet allowed her to feel comfortable enough to safely start the rediscovery process. She dated him, on and off, for five years:

There was a safety net built in. … He worked for a durable medical equipment place. So, he knew about wheelchairs. He could ride them. We’d go dancing; we’d do anything.

Patti’s sexuality was closely tied to the self-image she’d developed long before her injury. Cultural concepts of femininity and the attributes of attraction include the ability to project softness, warmth and physical desirability, all of which were initially affected by her SCI. They were replaced by denial, fright, resistance to change and by deliberately putting up barriers toward potential partners.

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Not The Same, Not “Normal”

Initial answers to questions about the effects of SCI on participants’ sexual responses or activity expressed that it was “not the same” or did not feel “right” or wasn’t working “normally.” Descriptive sentiments included adjectives such as, “frustrating,” “weird,” “irritating” and “awkward.” These altered or completely lost sensations, in combination with participants’ sustained desire to recover their pre-injury sense of pleasure, resulted in intrusive or distracting thoughts during attempted sexual activities. This thinking put a damper on their excitement and deterred them from trying again.

Karen: You think it’s hard not to compare what it used to be to what it is now. Well, if it’s not what it used to be then it’s not.

Bruce: The best I can say [is] that it certainly wasn’t the same.

Roy: I have feeling down there, but it’s just not the same. It is like a numb type of feeling. When a woman goes down on me, when I take my shot, I am up, I’m erect, and I could feel her going down on me and everything else but it’s just I can’t come. It feels good and everything else. I can still feel it.

What did they teach you [in rehab] about sexuality?

Roy: Nothing really, except it’s too bad you won’t be able to have sex.

That you won’t be able to have sex?

Roy: Yeah. Not the right ways. Unless you have like a device or something.

OK. What is the right way?

Roy: Normal.

Which is?

Roy: Getting it up by yourself.

Paul: It seems like 90 percent of my libido [is lost]. When they say men think with their dicks, in that area, it’s really true. When [I] don’t have the sensory stimulation of [my] genitals, it’s like virtually all my libido stuff is falling … I’m really not interested, only in so far as a duty kind of thing, or a sense of responsibility.

How We Learn What We Know

Feelings of being “not the same” and concerns about being “normal” are rooted in the way participants learned about sexuality from their social culture. Interviewees’ primary sources of learning about sex were experiential: in the form of talking with friends (who were often equally misinformed), being misled by media (e.g., Playboy, Cosmo, etc.), having sex, and sharing experiences with a committed partner. The primary theme, or perhaps silent policy, that has too often been repeated at home, in schools, at places of worship, and by hospitals and rehabilitation programs is “Don’t ask, don’t tell.”

Originally, the phrase “Don’t ask, don’t tell” was used to refer to a broad range of sexual topics. Eventually, it became best known as the U.S. government’s Clinton-era policy surrounding gays and lesbians in the military. In the context of the SCI participants, it denotes a “veil of silence” or a “lack of information.”

The notable absence of comprehensive education led to a genitally-focused, performance-oriented concept of sexuality that formed a false reference point for “normal” and presented developmental challenges to optimizing post-injury sexual potential for all participants.

Pointless! Why Bother?

Diminished sensation, lack of escalating arousal, and inability to ejaculate or orgasm made masturbation or sex with a partner seem “pointless,” reaffirmed unexpressed beliefs of imposed asexuality, and led to the general conclusion “why bother,” despite a common interest in affection and intimate exchange.

Terri
I didn’t want that. I don’t like that, that masturbation thing. I’ve tried it, I tried it once. Watching [a porn movie] and using a vibrator and it did absolutely nothing. So I just got frustrated and refused to do it anymore. Then, [I tried it again] with the person I was with before K, and now with K, I will. For me to just do it by myself, it doesn’t do anything for me. I can’t get turned on by it at all. There has to be this physical presence and other stimulus going on … [or else] it’s pointless.

Need to be With a Partner

Peak sexual experience was dependent on being with a partner for 14 interviewees whose masturbation experiences were reported as negative or nominal. They described the “need to be with a partner” after injury for various reasons: e.g., the excitement gained from pleasing or satisfying a partner, feelings of “connectedness” or complementary sexual energies, and identifying sex as an intimate expression of love, rather than as just a pleasurable release.

Karen
I think a lot of it has to do with how much he’s enjoyed it. If I know it was pleasurable for him, it’s easy for me to find pleasure in it. I love it when my husband has an orgasm. That’s very pleasurable for me, not only emotionally, but physically. It does a lot for me.

Sue
We laughed and he just really made me relax and really taught me to slow down and to pay attention to what was going on. He asked me how I was feeling … and [told] me what to do, too. We really had a good sexual relationship. … Most important is the love shared between partners, which intensifies the sensual experience of making love.

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