User's Guide for the Paralyzed Penis: Sex after spinal cord injury  

I’ve been a paraplegic for eleven years and I’m also a professional writer, so you would think writing about disability would come easily for me. It doesn’t. Most of my writing is humorous, and it’s difficult for me to use that light touch about disability issues without appearing to be in denial. Full disclosure then: I have no sensation below my ribs, and as you can no doubt imagine, sexually, there’s a lot about that that really sucks.

At the hospital where I did my rehab for spinal cord injury (SCI), all they gave me to help with sexual issues was a printout of instructions on how to masturbate, a sort of user’s manual for the paralyzed penis: “Put water based lubricant in the palm of your right hand. Grasp the shaft of your penis and stroke it in ascending and descending movements.” At the bottom of the page, like a warning on a Styrofoam coffee cup, it said, “CAUTION: Do not grip too tightly.”

“And remember,” a nurse told me, “the brain is the largest sex organ.” This advice really pissed me off with its do-as-I-say, not-as-I-do ease. But she was right in the sense that, for a long time, the idea of sex fucked with my mind.

My mother was most worried about me being single with no children. At her request I got a visit from a urologist who told me that he had no experience with spinal cord injury, but he had read in an article that frozen sperm was not as reliable as fresh sperm to impregnate a woman. If I ever wanted kids, then, getting that fresh sample would be my first problem. Thanks to the literature, I had a firm grip on how to handle my penis; coaxing sperm from it proved more difficult.

Initially, I was sure my sexual sensation would come back, and masturbation gave me pleasurable spasms in my stomach. But I found after hours of exertion that all there was to show for the effort were imprints of my fingers on my penis and frustration. I couldn’t orgasm, I couldn’t ejaculate, and like most men with spinal cord injury, I couldn’t even maintain an erection. The whole “self love” thing was like shaking a rubber chicken by the neck. Someone else’s rubber chicken.

My doctor prescribed Papaverine for the erectile dysfunction, a drug you inject into the corpus cavernosum with an insulin syringe. It didn’t help me ejaculate or orgasm, but it gave me an erection right away that lasted for hours. And hours and hours. It was as if my penis had an exoskeleton.

The odd thing about Papaverine was that the head of my penis didn’t swell in tune with the remainder of my erection. My member ended up looking like a scale sculpture of an acorn glued to the end of a baseball bat. This was another blow to my ego. I already had to deal with the possibility of embarrassment from my uncontrollable bladder or my errant G.I. tract. Now I had a conical cock.

But I was lucky enough to be injured at the beginning of a wave of progress for living with spinal cord injury, and after a couple of years of shooting up Papaverine, I discovered that Viagra gave me an erection that appeared natural. I still couldn’t ejaculate, but at least my penis was dependable. I didn’t have to get out my works before sex and I was no longer in danger of getting track marks on my organ.

The problem with Viagra for me, besides headaches and concerns about long term side effects, is that it takes up to two hours to work, which rules out spontaneity. I have to make a judgment call about whether an erection will be useful to have in a few hours. Since I’ve always been an optimist, this means that I end up swallowing a lot of unneeded pills and then sleeping on my back.

My now sturdy organ doesn’t get me any closer to my own enjoyment, though, and coping with the changes in my sex life is an on-going process. That doesn’t mean that sex has less value for me. Most people assume this is the case because they focus on what I’ve lost and not on what I still have. But I look at sex as pleasure across a continuum that involves all the experiences of making love: touch on parts of my body that have sensation, touch I give to my partner, the smell, the taste, vision. After I got over the tragedy of my losses, I found that my hospital nurse was right, sexual enjoyment is what's in your mind. The sex of penile need is primarily selfish, and since I have no sensation there, my sexual enjoyment has changed to shared sensations, even into a vicarious form of pleasure where my partner’s enjoyment is something I experience with her.

This doesn’t mean I think I am better off without orgasms or that I’m a better lover because of it. I remember what it is like to climax and many times my longing for that feeling is almost a physical pain. But there is more to sex than genital friction. It is difficult to explain this to the general public, and that’s why we in the SCI community don’t talk about sexuality and paralysis very often.

Our silence on the issue has created a shortage of research and literature specifically for spinal cord injury. Even now, when anything is written about disability and sex, we are grouped together with people who have every other type of “disability,” from MS to Down’s Syndrome. These books are generally irrelevant to SCI and I have always found them to be useless in coping with my situation.

One idea that gets me past that futility is something I heard about shortly after my hospital stay. Technically it is called a “paraorgasm” or “phantom orgasm,” where a person fantasizes an orgasm into being by mentally intensifying an existing sensation from one feeling region of their body and imagining it to occur in their genitals. I have read about other people with SCI being able to have these mental orgasms, but I have never met anyone who has had one. Most people in spinal cord injury circles have heard of them, and among the people I know it is kind of like a poltergeist sighting, you either believe in them or you don’t.

As I said, I’m an optimist about most things, so I’m sure it can happen. It’s just a matter of concentration and relaxation, like achieving nirvana but a little more difficult. I’ve tried several nontraditional ways of achieving this elusive orgasmic enlightenment, from hypnosis and visualization to dabbling with tantric sex practices. But this is not a full-time venture. Most of the time, I just enjoy sex for what it is. I am not hoping for more. True, it doesn’t reach the heights of what sex was for me; there is the build up, the enjoyment, but no denouement. Every new woman asks me, “What can I do to make you feel good?” The answer is that I don’t know; I am enjoying what sex is now. But if you believe in ghosts … "

Tre Trefethen is a freelance writer in the Bay Area who has examined the divisions of sexuality in science, sports, and politics. He has also written on subjects ranging from stem cell research to tandem sky diving, and he is currently working on a book about the union movement.