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Sexuality and Brain Injury
Relationships are in progress when brain injury happens. We get through the immediate crisis by default because of the many players in the incomprehensible medical drama that is unfolding. We are all numb temporarily. The brain-injured person seems protected by coma and post traumatic amnesia. Family members and friends are suspended in grief and follow programmed routines: go to work, send flowers, visit the patient, pick up the dry-cleaning, mow the lawn, attend parent-teacher conferences, accept the doctor's wisdom and pay the bills. Eventually we get the real picture--brain injury is devastating and rehabilitation is a long haul. It is time to exhale and recognize the permanent differences in our lives.
Rehabilitation tries to restore the injured person to maximum pre morbid capabilities. That goal has built-in assumptions and expectations for the survivor's family. Yes, I am his wife. Yes, I was a model of efficiency, emotional strength and physical stamina when the tragedy struck. But, did anyone ask me if I was happily married at the time of the auto accident? Did anyone ask if I wanted the responsibility of representing his needs and defending his rights? What about sexuality and brain injury?
After 25 years of marriage, I knew my husband best and recognized my critical role. I had compassion for him. I had fiduciary responsibilities. I had confidence in my problem-solving abilities. I was an old hand at juggling a dozen responsibilities well. So, for the past five years, I have been advocate, rehabilitation team member and caregiver at home on weekends. As expected, I automatically stepped into the rhythm of these additional roles. Later I realized that the family education series, support group meetings, books and articles that I turned to failed to address the uncomfortable issue of sexuality for survivors of brain injury.
Yet the issue of sexuality became the rock of my renewed self esteem and survival. I would accept the challenges of rehabilitation except for renewing marital relations, regardless of the physical and psychological value of intimacy for my spouse's recovery. No outsider was making it an issue; the struggle was all in my head. I was angry, hurt, stubborn and free. I could choose between what he wanted and I needed. I chose me. I had done so much taking care of him as he denied his alcoholism, criticized my physical appearance, left the "sweat jobs" around the house to me and pursued his hobbies, and expected regular sexual gratification despite my years of unsatisfied intimate needs. Now he needed caretaking in the very literal sense, perhaps for the rest of his life. Only because he was brain-injured and an unequal opponent did I have the courage to draw the line at sexual relations.
The home visits started before the eight-month in-hospital rehabilitation ended. The home visits with overnight stays began with us sharing the same bed and experimenting with sexual intimacy. I learned several things quickly:
My decision presented a number of challenges. How do I respond to his requests for physical intimacy? How do I explain my objections to a cognitively disabled, egocentric, emotionally insecure, sexually adolescent partner with excellent long term memory of the "good old days?" How do I juggle guilt, anger, compassion, marital "appearances" and personal survival? Where can I get help?
One foray into psychological counseling left me more angry than before. Why had I not left the man sooner? Why was my identity so tied to his? These questions failed to address the changed playing field. If I should have then, I could not now for different reasons. When I found the courage to share our private marital past and current sexuality issues with the female psychologist on my husband's rehabilitation team, I thought "How could I lose? She was a woman, a trained therapist and familiar with both brain injury and my spouse's deficits." She had no answers and no apparent empathy. "When you figure it out, Darlene, we'll write the book on it." That response hurt but it also helped. I got mad again. You can bet I would figure it out and then write the book by myself!
It was like any other challenge. You do what you have to do, learn as you go, make mistakes, two steps forward, one step back and stay focused on the target. The first practical thing I did was to coach my husband through successful self-masturbation. Now ,if he needed release, he could manage the process personally with the aid of a Playboy magazine if necessary. My only task was to make sure curtains or doors were closed and lights out to ensure his privacy and prevent embarrassment to others.
I also reinforced what I said with how I acted. As one of his caretakers, I conscientiously eliminated behaviors that were old marital habits. I moved to my own room upstairs with a single bed, was always fully clothed in his presence, closed the door when I used the bathroom, did not make sexual or suggestive comments or gestures, eventually eliminated his requests for "tucking in" at bedtime, gave him a quick kiss only when I felt like it and not because he asked, and then gently restrained his hands to remind him that touching my breasts was not okay.
That was the easy part. The hard parts are the mental and emotional components of my decision juxtaposed with his short term memory impairment, perseveration and other reduced capacities. So over the months and years I repeated my needs, my decision and my answers again and again. Sometimes I was patient; sometimes I was angry. Sometimes I lectured at length; other times a simple "Not tonight, dear" sufficed. His litany remains pretty much unchanged, although the sex questions are asked less frequently:
Why won't you go to sleep with me?
It is a heart-wrenching tug that is hard to resist sometimes but, for now, we are doing the best that each of us can.
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