(Updated April 2011)
My dad, like a lot of fathers from his generation, waited too long to have his big sex talk with me. By then I had learned all kinds of bad habits and questionable information from my peers, most of whom were prodigious liars. But one thing Dad told me turned out to be both reliable and prophetic: “It’s all up here,” he said, tapping on his temple with his forefinger.
Chances are you have seen this kind of statement before: “The brain is the most powerful sex organ we have.” Nothing new here, but now we may have a scientific basis for understanding it, according to researcher Kim Anderson-Erisman, the current director of education at The Miami Project to Cure Paralysis and former assistant professor in the Reeve-Irvine Research Center’s department of neurosurgery. Even though there are differences in the way men and women with spinal cord injury experience sexual arousal and intercourse, Anderson-Erisman’s most recent research shows that both genders have one rather remarkable adaptive trait in common: the ability to develop new areas of arousal above the injury level when the injury is considered complete. She suggests that one possible reason for this is the relatively recently discovered phenomenon that scientific research calls “neuroplasticity.”
For the better part of the last four centuries, right up until the early 1970s, the brain was thought to be static, unchangeable. When damage occurred, it was taken as scientific fact that the brain could not alter its structure or develop new ways of compensating for the damage. Gradually, over the last three-plus decades, the conventional wisdom has done a remarkable flip-flop. Thanks to countless scientific studies, including scores that have focused on the regenerative capabilities of the spinal cord, we now know that the central nervous system is remarkably resilient, and that the quality of neuroplasticity means the CNS is capable of reorganizing itself and creating new ways of functioning.
In terms of sexual function and SCI, Anderson-Erisman’s research (three papers published in Spinal Cord in October 2006) can be interpreted as good news — even though focused on “dysfunction.” It predictably shows that those with incomplete injuries and sensation in the genital area have the best chance of maintaining a “normal” sex life, given certain adaptations. But what is surprising is the degree to which those with complete injuries (inability to lift legs against gravity and lack of sensation in the anal area) can find new areas of arousal and sexual pleasure over time. Furthermore, this capability seems to be reserved almost exclusively for those with complete injuries. Whether this phenomenon is due to re-learning motivated by need and perfected with practice or arises from re-growth and/or re-arranging of neural pathways remains to be seen. Maybe it’s all of the above.
Anderson-Erisman makes a strong case for the need to recognize sexual pleasure as a neglected factor in measuring overall quality of life for those with SCI. Most of the quality of life research has focused on areas other than sex, even though 82.9 percent of Anderson-Erisman’s 286 survey respondents indicated that “improving sexual function was important to improving their quality of life.” Primary reasons for pursuing sex were cited by respondents as follows: intimacy need (57.7 percent), sexual need (18.9 percent), self-esteem (9.8 percent), and keeping a partner (8.4 percent). The clear winner is the need for intimacy. The least commonly reported reason was fertility (1 percent), which may be explainable by the survey’s overall emphasis on pleasure and performance. Surely the possibility of bringing babies into the world is an important quality of life consideration to more than one in 100 people with SCI.
Longtime SCI researcher Dr. Marca Sipski-Alexander and two co-authors documented related clinical findings in the June 2006 Spinal Cord (No. 44, pp. 798-804). Sipski-Alexander, current medical director of inpatient acute rehabilitation services at Renown Rehabilitation Hospital and former director of neuroscience research at the University of Alabama at Birmingham School of Medicine, reported, among other results, that men with SCI have the ability to reach orgasm even though they may not be able to ejaculate. For years, Sipski Alexander has been at the forefront of clarifying the mysteries of orgasm in both men and women with SCI, and she is currently researching sexual response in women with MS.
The need for more research is clear, but taking the long view, it’s also clear that individual, grass-roots involvement and “research” that happens behind closed doors is a critical link in the circle of understanding. We begin this year’s “Sex, Wheels & Relationships” issue with the story of Jim Boen, a pre-sexual-revolution quad who pioneered the idea of talking openly at a time when sex and disability was a hush-hush topic. The willingness of Boen and others of his generation to get naked in public — sometimes literally — set the stage for today’s academic researchers, some of whom specialize entirely in the field of sexuality and disability. Anderson-Erisman’s survey highlights the need to look deeper into our need for intimacy and asks: Is sexuality so important that our brains have the ability to remap areas above the level of injury to compensate for loss of sensation in our genitals? Perhaps the personal experiences of our writers may encourage you to search for your own answer. How sexy is your brain?
Jim Boen: Pioneering Sex Talk: I was injured at C5-6, incomplete, at age 19 in 1951. There wasn’t anybody to talk to about sex in the hospital. The best confirmation about sex I got was when I made out with a nurse. If you mentioned sex in the hospital in those days, they called in a shrink.
After hospitalization I went back to Wisconsin, a small town, and they weren’t ready for quads. When I went on to the University of Illinois, there were a bunch of quads there and I learned a lot. I was able to get an erection with manual stimulation not long after my injury. I ejaculated just a couple of times, but not enough to impregnate my wife, who I met five years after my injury. We eventually adopted two children.
Years after we got married, a VA hospital in Minneapolis called me to speak to Vietnam vets. It was a big flop. They just stared at me. They were all quads, just bewildered, at the stage of hoping they would get well. They probably never heard a professor talking the language — I can talk as dirty as any. They were told to go there and hear me. So I talked and that was that.
One time I was down at Wright State in Ohio, and a bunch of people came to hear me, some post-polios, some quads, MS and so on. The more mixed the audience, the harder it is to know what to say. I just told them my story, that I had been married for a number of years and that I was sympathetic to their plight, but they’d have to tell me what their plight is.
The hang-up people have is they’re embarrassed. Shy and embarrassed. It’s a big problem. I decided early on to hell with that. Forget the embarrassment. Don’t worry about nakedness. Talk freely and openly about sex. Most people can’t do it, disabled or not.
Tom Mooney, a partial quad, with Ted Cole, wrote a book on sex and disability
Ted Cole and I started a sex and disability program out of the University of Minnesota and there were 84 med students and clergy students. Those two professions were made up of conservative people, so if a gay guy with gonorrhea went to a doctor, it would become a moral situation. The doctor would say, “You shouldn’t do that stuff.” Not very helpful. Same with the clergy. So the people that needed sex counseling were just rebuffed by the professions that they looked to for help. That’s why we started the program at Minnesota.
We’d get on little planes and fly around. We got invited to the opening of the sex museum in San Francisco. That was a blast! There were movie stars and my wife was popping corks. We had one session where we were all naked. About 20 couples. I had a lesbian who was very hairy come sit on my lap and proposition me. And some university administrators were there — three or four of them were naked.
Dorothy and I have been married 49 years. Our children have families of their own and we have three grandchildren. I’m 74, and I think the essence of marriage is the mutual feeling that both are carrying their share of the load. Whatever that may be, whether doing things in the home or working outside the home. I was a university professor for 41 years. I brought home the bacon, helped raise the kids until I couldn’t catch ’em any more. But afterward I could talk to them.
Julienne Dallara: Exploring and Communicating: Sex imitates life, don’t you know? When you can’t walk the same as before, can’t urinate or defecate the same as before, you have to find a different approach to get it done, or you die. When the old approach to sex doesn’t work, what do you do? You either give up on sex and it dies, or you try a different approach.
My experience upon coming home from the hospital was that my husband desperately wanted to return to life the way it was pre-paralysis. Unfortunately, that meant him trying hard to see me the way I was before, pre-wheelchair. At first we were thrilled to be back together after such a long separation. l didn’t put it together, expecting everything to be the way it was after I got back home. Looking back, it seems that I was incredibly thick. I just didn’t catch on that life would be different from now on.
My husband and I tried to make love, “tried” being the operative word. I felt that I was broken because I couldn’t respond the way I had in the past. He wasn’t able to make the transition from what we used to do that worked and what might work now. Worse, we didn’t talk about it — when it failed again and again, we just began to avoid each other.
It was years later, after the marriage had failed, that I tried a different way. I met a man who asked. He simply asked where I could feel and what I could feel. I wasn’t completely sure — having never been asked that question before in bed. I surprised him by crying, grateful that someone had finally asked. We took it from there. Before, when I had the luxury of feeling everywhere and being able to move everything, sex had mostly focused on genitals and breasts — the lazy approach to lovemaking. After paralysis, we learned to focus on wherever I had feeling, and to take our time with it. Even that little quarter-shaped spot of feeling on my left foot can be an erogenous zone, we discovered.
One of the things that blocks my feelings of pleasure is the constant pain. It is hard to relax into fun and pleasure when you are tensing up against pain. We’ve discovered that the best foreplay for us is when Dan massages my legs and hips to relieve the spasms and pain. He likes it, I relax and then we can do much better without the pain in the way.
The Big “O.” Everyone’s question: “Can you get there from here?” The answer is yes, but in a different way than before. When you break it down into its elements, an orgasm is tension, gradually building, building more steadily, then inevitably, suddenly, releasing. When the tension is building, there are contractions of the vaginal muscles. When the tension breaks, there is a wash of release. Dan and I have had to learn my body and its new signals. The down side is that it isn’t the same all-or-nothing feeling as before. The up side is multiple orgasms — and multiples of multiples! The more we explore and communicate, the more pleasure we find.
James Barr: Find What Works for You: I had a tumor removed from my spine eight years ago. I had a very healthy sex life before they found the tumor, but afterwards, for the first four years, nothing. Then I met a girl and after a few weeks she convinced me to try. Although I could not get it hard, even with Viagra and a pump, she still performed oral on me, and I nearly came, but didn’t, so I tried a vibrating device on my penis and God did I not explode!
Ever since then, I have sex regularly with different people. Always have to use a vibrator but what the hell, I still come, and a by-product is that I have learned to be very sensual with my partner. If only I knew what a woman really enjoyed before my surgery, I would have been one of the best lovers on the planet.
Now it is a little more awkward, like positions, etc., but at the end of the day, I have satisfied my woman, and that makes me more of a man than I ever was before. I use toys and lots and lots of sensual touching with fingers and hands and mouth and tongue, but I think I enjoy it just as much as the girl, as it’s me who is making her, well, you know, and to feel like I can make my or any woman happy is one of the biggest turn-ons for me now. OK, I would love to be walking with a working penis, but I’m not, so what do you do, just forget it and hide away? Nah, not my style. Just experiment with anything that you can feel — at the end of the day it’s the end result that counts.
And just one more thing. When I have an orgasm now, I don’t just feel it in the usual place (between the legs), I feel it all over my body, like a woman does, so they have said to me, and it is so intense, it is incredible, even better than before the surgery. I think it has to do with signals coming from the brain to the penis being misdirected and going all over my body and they seem to get stuck. And it lasts for ages, I mean minutes, not seconds. I think some signals get stuck at the wound site, and eventually get through, giving me really long orgasms, although I only come for the normal time as any other man, my brain still thinks I’m having an orgasm, and it feels like I am. I tell you I have had some strange reactions from women after about three or four minutes with all the shouting and moving of the body. Some actually think that they have made this happen, and God, do they love to think that they could make a man do this, but what the hell, why tell them? After all, they made me happy, and if they go home thinking that they have done something special, well that’s good also.
Don’t laugh, what I am telling you is the truth, and I want everyone in a chair to know that there is a sex life for everyone, but only if you want it bad enough and are willing to find what works for you.
Jennifer Schmidt: Surprised By My Brain: I was injured as a virgin. This still ignites anger in me and it’s been 18 years since my injury.
After the car accident with my friends my freshmen year of high school, my self-identity was forever altered. I found myself a C6 quad and worried if a man would ever find me attractive. I had zero experience in the sex department at that point. As for finding pleasure post-injury and — gasp! — orgasming, I didn’t even think about it. I was too busy trying to stay warm. My space heater brought me enough pleasure.
But soon I had a boyfriend and sex began to creep into my mind. I finally found myself feeling the desire to have sex, but would I even enjoy it? After losing my virginity at age 19, I soon realized that yes, I could definitely still enjoy sex despite having little to no sensation in my vagina and breasts. It may sound surprising to the uneducated mind, but the brain is a huge, pulsating sex organ and I quickly started to understand how all of my pleasure would be based from there.
For me, it’s all about the act of being joined with the man I love. Just knowing and seeing us having sex (yes, being able to see what’s going on and happening to me is incredibly helpful) makes my mind go places above and beyond everyday mundane feelings. I do feel a release, a lessened feeling of wanting sex after we’re done. You can call it an orgasm or whatever, but it’s definitely some kind of release. I feel the release with light autonomic dysreflexia (hot flashes, flushed face) and that makes me feel as though I’ve had enough, usually by the time my partner is done. And in order to even start feeling AD, the man has to be big enough for me to feel anything. Sometimes a minor headache occurs if I’ve had sex for too long, but usually I make sure to stop before then.
Despite using autonomic dysreflexia to my advantage to enjoy sex, there’s a lot to be said for the places I can still feel normally. My neck, ear lobes, the insides of my elbows where they draw blood, are all highly sensitive and bring extreme pleasure. I noticed a huge heightened sensitivity in my upper body right after my injury, but had no idea at the time that this change would also be key in helping me eventually enjoy sex.
Sometimes all my partner has to do is intensely lick the insides of my elbows for me to moan in pleasure. I’ve also found that I’m very vocal, too. I’m not sure if this is related to my injury or not, but I’m pretty sure it is. Hey, I still have the ability to use my voice. Might as well use it, right?
Also, like most women, disabled or not, a man’s cologne drives me over the edge and makes sex even more enjoyable. My man MUST smell good (this is a requirement).
I really have to work to make up for the lack of sensation. But by using visuals (mirrors, propping myself up so I can see), sounds, smell (candles, incense, perfume, cologne), and finding areas on my body that are still sensitive, I can incorporate all of these things into having a fully satisfying sexual rendezvous.
Does Cialis Trump Viagra?
On the male performance front, a European double-blind, randomized trial presented at the 21st Congress of the European Association of Urology in April of 2006 stated that 84.6 percent of SCI participants reported improved erections [www.medicalnewstoday.com/medicalnews.php?newsid=41279] after taking Cialis (tadalafil). The results are similar to what has been reported with Viagra, the most commonly used medicine for treatment of erectile dysfunction, but Viagra’s potential effects occupy a window of several hours whereas Cialis can be activated within a 36-hour window. (Men who are taking some form of nitrate are cautioned not to take Viagra or Cialis.)