Life on Wheels (68 page)

Some redefinition is called for here, as well. Ejaculation or orgasm is not the only criterion for being sensual with yourself. Masturbation does not need to be fixed in those terms. Touching yourself, fantasizing, using vibrators, magazines, videos, or the Internet to enjoy stimulating erotic material—any of these can be a means of expressing yourself sexually. Self-loving can give you a break from sexual loneliness—an experience hardly limited to those with a disability.

There are many ways to provide pleasure to yourself. For men, a penis-sleeve—often in the form of and designed to act and feel like a vagina—is widely available. As psychologist and sexuality counselor Dr. Linda Mona recommends on her web site, MyPleasure.com:

Even if you don’t have normal hand strength or dexterity, there is a way. Objects that can be used to stimulate the body—be they vibrators, pieces of satin, or anything you imagine would feel good against sensitive parts of your body—can be strapped to your hand.

A special word on video and Internet sexual content. Very little of it portrays good sex in the context of authentic personal connection. The quality of interaction between the participants is extremely basic—if not base. Unwittingly, you can get drawn into the belief that anyone is secretly just waiting to get it on with you or that you’re supposed to be attractive enough that they should. Your disability self could well end up feeling less validated, rather than getting the enjoyment and release you’re seeking through this content.

This is not to preach that adult materials are bad for you, simply that there is a boundary to which you should give some attention, observing how you feel after you watch something erotic, and take your feelings into account around the material you choose. There is, in fact, some adult content that depicts more authentic relationships—and so more authentic sexual connection in which people are really wanting to please each other and really having satisfying sex instead of just performing for the camera. Good Vibrations (www.goodvibes.com) has a rating system for adult videos that allows you to make choices along these lines.

When you can’t feel parts of your body, or have a reduced sexual response, your priorities are a result of what is possible, and you will learn what your personal “top 10” list of intimate preferences includes. Your favorites are your favorites, and what might have been your favorite prior to an acquired disability moves to a lower priority in relation to those activities that provide you with optimal pleasure—often found in more subtle sensations. This paraplegic woman in her 30s observes:

Sexual experience can also be better for your partner. Studies have found that many women prefer a slower, more romantic style of sexual sharing and that genital intercourse is not their first priority. A disabled man may be a more satisfying lover in many ways because he may not be as physically or emotionally driven to accomplish intercourse.

Roberta Travis, writing in
New Mobility
magazine, says that the best lover in her experience was a paraplegic man.

Having met a new partner, it will be necessary to have “The Talk,” during which you’ll explain your unique sexual style. At first, this can be a daunting task. Describing catheters, a weak bladder or bowels, levels of sensation, and other details is not very sexy. But, by demonstrating your willingness to be open and honest, you will set the tone of mutual intimacy needed in a healthy sexual relationship. If you show you are unafraid, you will help your partner—who will certainly have questions in mind—relax into the process with you.

This is the chance to demonstrate that you are attracted to and excited by this person. Once you know the feeling is mutual, then you are in for a wonderful experience, and your partner is likely to be open and accepting about understanding your needs.

You may need your partner to assist with clinical tasks such as changing a catheter or helping in the bathroom. This can have a negative effect on creating a romantic mood, but it can also be a shared process that enhances intimacy, even as an opening to sexual intimacy. Once these duties are addressed, a couple can enter into the space of closeness and passion just as any other couple must—with patience, gentleness, and doing those simple things that begin the process of arousal.

The style with new partners is to relax into mutual discovery, to discuss and learn about each other’s needs, to find every possible touch and contact that is pleasurable, and to separate from the various cultural pressures that create skewed expectations. Getting started with honest discussion and exploration puts the focus where it belongs: on people loving each other and expressing that love through sensual touch, trust, and sincere giving. Pretty damn sexy.

Revealing your body intimately—despite the fact that you may be very accustomed to being naked with a physician or a personal assistant—is a very vulnerable encounter. It can be a poignant test of trust with a person you choose as a sexual partner.

First exposure deserves to be handled with care. But success with well-chosen intimate partners who will show you acceptance will expose the invalidity of your fears. Your partner is able to make the same adjustment as you are to your “new normal,” though you may need to allow him or her time. Everyone—even those who fit the cultural models of what’s beautiful and sexy—tends to be self-conscious about their bodies on some level. As always, remember to keep the real effects of your disability in proper perspective with the whole of your shared life experience.

Bodily appearance, although meaningful, does not play as large a role as you might suspect. Besides, while in the act of intimacy, lying next to or on top of each other, we are not seeing much of the body anyway. We are reveling in touch and intimacy.

Your body-image concerns can simply be overridden by what you find stimulating and sexy:

Your general level of health has a direct impact on your sexuality. If your body is pressured with physical and emotional demands, you are less able to enjoy your sexuality. Depression and stress have specific physiologic effects through hormones and enzymes that are released in response. They can impact your immune system, reduce your capacity to relax and be open to sensations, greatly lessen orgasmic response, and draw your attention away from your partner.

Eat a good diet, balanced with a range of foods that are whole and free of chemicals. Control the amounts of sugar, alcohol, tobacco, and caffeine in your diet, all of which deplete the quality of your blood and circulation, promote fatigue, and lessen sexual response.

Control your weight. If you are substantially overweight, you will have to work harder if you use a manual wheelchair and will increase the risk of pressure sores. If you are fatigued and wearing dressings on a sore, this will limit your feelings of being attractive as well as limit possible positions.

Use of drugs—prescription or otherwise—can impact sexuality. Ask your doctor about the possible effect on your libido of any prescription medications you take. If you see different doctors, make sure that each of them knows what the other has prescribed. Some drugs—particularly spasticity control, pain management, or tranquilizing medications—can directly interfere with sexual arousal, ejaculation for men, or menstruation for women.

Always learn the detailed effects on the body of any medicine or substance you elect to use. For example, some disabled partners have an interest in the drug MDMA, also known as Ecstasy, to heighten their sensual responses. Although it may have this effect, it also impedes sexual function. MDMA contains an amphetamine, and the aftermath can include prolonged fatigue and headache. It is also very dehyrdrating, and people endanger themselves by not drinking substantial amounts of water during the experience. Use extreme caution if you are considering the use of any drug that has not been prescribed for you.

Genital function varies greatly according to the particular disability, its degree and type. The stage of a degenerative disorder such as multiple sclerosis, the level and completeness of a spinal cord lesion, nerves attacked by the polio virus, the area and extent of an infectious disease of the brain or spinal cord— all are examples of what will differently determine functions, including lubrication, penile or clitoral erection, ejaculation, and orgasm. The effects on these of a given disability could be significant—or nominal. The better you understand how your body works, the more realistic your expectations will be of your sexual capacities. Know your body, be aligned with your objective possibilities, and you will be freed of unnecessary frustrations and more open to the many enjoyable options that remain available to you.

Some physiologic features of your disability will not change. An SCI, depending on the level and completeness, will affect penile or clitoral sensation and response. Weakness and spasticity from advanced muscular dystrophy, cerebral palsy, or ataxia may disrupt the ability to tilt the pelvis. Examples like these are a fact of your body and its disability.

Sometimes, your physiology can change, even for presumably stable conditions. Take the example of this 40-year old spinal cord paraplegic:

Belief is a very powerful thing; this is being increasingly proven scientifically. “Psychosomatic” doesn’t just mean “in your head.” Clear and measurable connections exist between what we think and our body chemistry.

Those who experience muscle spasms will need to identify sexual positions that are less likely to bring them on. For women, spasticity of the perineal muscles can interfere with vaginal penetration. Lying on your back with the knees bent or on your side are positions that some have found less likely to promote the occurrence of these spasms.

Orgasm is a response that men and women generally associate with peak sexual experience. But orgasm occurs in stages, a sexual response cycle marked by increases in blood flow and muscle tension. Changes in the body you might experience include erection of the penis in men, enlargement of the clitoris or vaginal lubrication in women, sex flush (blood flow to the skin), an increase in heart rate and blood pressure, a focusing of the mind to the body, and a deep quality of relaxation.

Orgasm is very much a matter of where you put your attention. Sexuality researcher Mitch Tepper says:

What kind of sexual response you are capable of depends on the nature of your disability and nerve damage. It is also a question of time. Most spinal-injured men will be capable of erection within six months of injury, some sooner. Both women and men recover varying degrees of sensitivity and response after injury. In the case of a progressive condition such as multiple sclerosis, loss of response—and interest—is not unusual and might come and go over time.

In a 1995 study at Kessler Rehab in Orange, New Jersey, 25 women with SCI were asked to attempt to achieve orgasm in a laboratory setting. Partners were allowed to provide stimulation if needed. They found that level of injury was less of a factor and that education was significant.