When the disease struck in 1955, Mark was six and he became the focus of the family, especially for his mother. Her dedication to him was unwavering. She cared for him with patience and tenderness throughout his young life.
A few years after falling sick, Mark’s sister, Karen, died of pneumonia and since that time an unearned guilt had shadowed him. He believed that his parents, particularly his mother, were so preoccupied with him that they didn’t notice that Karen needed help until it was too late. Even though there was no reason to believe this was true, Mark still burned with guilt. He felt guilty about other things too.
Mark sometimes woke up with his crotch sticky with semen. He remembered a flicker of disgust cross his mother’s face as she cleaned him one morning when he was around twelve. He could get aroused by having his left leg edged further over to his right so that his penis was sandwiched between his thighs, and a few times he had asked his attendants to position it this way. He discovered this accidentally when an aide had left him like this for a few moments while bathing him.
Even though Mark could hardly be called a traditional Catholic, he still felt shame about his sexuality, which he attributed to his religious upbringing. Like his guilt about his sister’s death, it may have been irrational, but to him it seemed as real as the imposing iron lung in which he spent most of his days.
His parents never talked about sex and he received no education about it from the rafts of doctors and therapists who treated him throughout his life. Like many disabled people, Mark’s sexuality went unacknowledged. Most people seemed to assume his disability canceled out his need for touch and intimacy.
Despite all of his physical challenges, Mark had earned a bachelor’s degree in English from the University of California, Berkeley, and was a published poet and journalist. He tapped out his work using a mouth stick and a word processor. Mark had started on a master’s program in journalism before the effects of post-polio syndrome, a condition that attacks the muscles and causes debilitating fatigue, forced him out of it. He lived near campus and traveled to and from school on a reclining wheelchair that looked like a motorized gurney. He lay flat on it or slightly propped up. His spine was too curved for him to sit up in a standard wheelchair.
Mark had felt alone and alienated for as long as he could remember. Most days he could imagine no end to the loneliness that stretched out before him like a boundless, desolate road. His sexual experience consisted of a few furtive touches from nurses and sudden arousal while his attendants bathed him. Embarrassment always followed. “Sometimes I let myself think that there is someone out there for me, but, really, I think it’s hopeless. I feel like I’m outside a fancy restaurant, looking through the window and watching people feasting on all kinds of wonderful food that I’ll never be able to taste,” he said.
I had been a surrogate and a student of human sexuality long enough to know that attraction involves many factors and you need not have a pop culture–approved body to have a loving relationship and a sizzling sex life. I knew other disabled people who enjoyed both. Still, was he right about not being able to find a partner? I found myself thinking. Even though I had only just met Mark, I felt real affection for him. He was witty, smart, and brave, but could someone this profoundly physically impaired realistically expect to find a partner? Would I date him, or would I be too scared? By training and by temperament I’m inclined to be supportive and encouraging, to see possibilities and potential even in tough situations. I wanted to reassure Mark that there would be someone for him, but I also worried about creating false hope.
“Mark, I can’t predict the future, but part of my job as a surrogate is to prepare you to have a loving, happy relationship if you meet the right woman,” I said. “Let’s talk more about what you want to get out of this process and let’s learn more about what your body is capable of.” I think I said this as much to be honest with Mark as to remind myself of what I could and could not do as a surrogate partner.
“Suppose you began a relationship with someone tomorrow who you thought was just perfect. What would you feel?”
“Well, probably a lot of things. Anxiety, excitement, relief.”
“What would the anxiety be about?”
Mark paused and then asked me to bring the oxygen tube to him. I stood up, the redwood floor of the old cottage creaking as I took the few steps to the respirator. After a few seconds he slackened his lips and I took the breathing tube out of his mouth.
“That it would be obvious that . . . that I’m a virgin and she would want someone more experienced and capable.”
“Okay, so it’s important for you to get some experience. That’s natural. Lots of people worry that they won’t have enough practice to please a partner.”
“I don’t want to live my whole life without having sex.”
“You don’t have to. We can accomplish that together.”
For someone like Mark to be told that what he wanted was achievable and that his fears were not so different from those that many of us confront was reassuring. Even clients who don’t suffer from the kind of physical challenges Mark faced are often relieved to hear that they are not alone in their insecurities and worries. Mark was so accustomed to being an outsider, to being someone who needed special consideration and accommodation that hearing this probably felt akin to a compliment.
Mark and I had talked for close to an hour, and, if he was ready, it was time to begin the physical part of the session.
“How would you feel about doing some physical exploration now?”
“Okay, I mean, yeah, I’d like that.”
It was time for us to get undressed and this would mean me taking off Mark’s clothes and seeing his body for the first time. Suddenly, I was scared. He was so fragile. What if I hurt him? What if I couldn’t maneuver around his body? Go slow, slow, slow, I told myself.
“Mark, if at any time I’m doing something that doesn’t feel good, let me know. This is important not just for our work together, but for you to learn how to express likes and dislikes to a potential partner. If something feels bad or uncomfortable, just tell me to stop, okay?”
“Okay,” he said, with a slightly worried look on his face.
“Remember, this all happens at your pace, so if you want me to slow down or stop at any time all you have to do is tell me.”
I slowly lifted the blanket that covered him. His frail body was in a red, long-sleeve, button-down shirt and a pair of black sweatpants. Slow and gentle, slow and gentle, I said to myself, like a mantra. “Let’s start with your shirt.” I undid the first button and then worked my way down the column of buttons. When I was finished, I undid the button at the wrist of his left sleeve. Then I folded his shirt over his arm as much as I could. The collar rested off his shoulder. Because he spent so little time outdoors, Mark’s skin was pale. Against the red of the shirt it looked salt-colored. I briskly rubbed my hands together to warm them up and then slid one under his shirt. I carefully brought Mark’s delicate arm toward me while inching the sleeve off of his shoulder. As I continued to peel it away, I moved his arm back down toward the bed. The sleeve was almost completely off when Mark screamed—loudly. Oh my God! Had I hurt him?
“What’s going on?” I said in as calm a voice as I could muster.
“My nail, you caught my nail in the shirt,” he said.
“Okay, okay . . . let me see.” I freed his fingers from the shirt that was now clustered around his hand.
Remember to ask Vera to trim his nails, I told myself.
“Mark, I need to know when something doesn’t feel good, but yelling isn’t sexy. I know we need to be very careful with your body, so don’t ever not tell me if you’re feeling uncomfortable or worried about getting hurt, but try to do it in a calmer voice. Remember, part of what we’re doing here is modeling how you’ll communicate with a partner, and that could really scare someone and kill the mood.” I had goose bumps on my arm that I hoped Mark didn’t notice. “Do you need some oxygen befor
e we go on?” To my surprise, he didn’t. Once I had freed his left side from his shirt, I went to work on the right.
Then it was time to take off his pants. Mark’s left hip jutted up and over like a hood of bone and a sliver of his left butt cheek was exposed. At seventy pounds, he was light enough for me to slide the elastic waist of his pants and underwear down past his groin and knees while he stayed pressed flat against the bed. When I got to his feet, I gave the pants a little tug and they came completely off of him. Then I saw his fragile, exposed body in full.
“How are you doing, Mark? Are you warm enough?”
“Yeah,” he said in a low voice.
It was my turn to undress. I took off my blouse and jeans, unhooked my bra, slid off my underwear and socks, and draped my clothes over the chair as Mark looked on.
“I’ve never been with a n-n-nude w-w-woman before.”
Even though his body was skeletal, Mark had a chubby face and it turned pink.
“That’s why I’m here,” I reassured him.
I got into bed next to him.
“Most clients are really nervous at this stage,” I said. “A big part of having satisfying sex is being able to relax, so I’m going to show you an exercise that will help with that.”
The point where Mark and I were in our work together was were I would typically teach my clients how to do deep, diaphragmatic breathing in which you draw full, long breaths in, expanding your abdomen, and then immediately but slowly exhale as you deflate it, all the while trying to focus solely on your breathing. I also generally guide clients to do a full scan of their body, encouraging them to free any tension that they detect. Because Mark couldn’t breathe fully, however, I asked him to concentrate on each breath he took, even if it was shallow. “Close your eyes and try to clear your mind of everything but your breathing,” I said.
We lay next to each other for a few minutes with our eyes closed and our minds trained on our breath. I rolled over to my side and snuggled next to him, the heat of his body warming my breasts and thighs. At five-foot-eight, I felt nearly Amazonian next to Mark. “Doing good,” I said. I gently placed my arm over his waist, slightly tensing my muscles so that my full weight didn’t rest on him.
In first sessions I typically do an exercise called Sensual Touch. I think of it as a close reading of a client’s body. I explore him from his toes to his head with my hands and observe all the particularities of his physicality. I notice skin tone, temperature, freckles, scars, and the other attributes that make each body unique. Sensual Touch gives clients an opportunity to begin to learn about which areas of their body are the most responsive. Clients are often surprised to find that areas outside of the genitals can feel arousing or pleasurable to my touch. For example, more than one client has told me that the backs of his knees are a particularly sensitive area.
I explained Sensual Touch to Mark. Although he was paralyzed, he still had sensation all over his body, so he would feel my hands moving up and down. Typically, I explore both the back and front of a client’s body, but with Mark I was limited to the front and the left side of his back because of the way he needed to stay positioned. I encouraged him to try to recognize four common reactions: feeling neutral, feeling nurtured, feeling sensual, and feeling sexual. “Sensual feels pleasurable, but not necessarily sexually arousing. Sexual is arousing. There are only two rules: Do your best to stay in your body and in the moment, and let me know if something doesn’t feel good. When you realize that your attention has drifted, bring yourself back into your body, to where my hands are.”
I ran my fingers through Mark’s hair and told him how soft and wonderful it felt.
I slowly got up and walked to the end of the bed. I took his feet in my hands. They were narrow and slightly clammy, and his toenails were a bit too long. I made another mental note to ask Vera to trim his nails. I lightly kneaded the balls of his feet with my thumbs and he wiggled his toes.
“Does that tickle?”
“No, it feels good,” Mark replied.
I worked my way over the tops of his feet to his ankles and up his shins, which had only a sprinkling of down-soft light brown hair. I slowly swept my hands over my thighs and inched my way up to his groin. Mark was already hard and his scrotum was bulging and had turned a deep brownish red. I gently took his penis in my hand and circled around it lightly with my fingertip. As I released it and started up his abdomen Mark let out a little yelp and came. He squeezed his eyes shut and said “damn it” under his breath. Then he said, “I’m sorry.”
“Don’t worry. It’s okay,” I said.
It was clear that Mark was going to need some help in prolonging ejaculation, and this gave me a perfect opportunity to explain the human sexual response cycle and the arousal scale.
“The human sexual response cycle has four stages. The first is Excitement, which begins with the first twinge of arousal. It’s when physical signs like erection happen. Plateau comes after that. This is an exquisite stage that can be prolonged. You’re fully aroused at this point. You may notice some pre-ejaculate and you’ll typically see some muscle tension and your heart rate will pick up. The third stage is Orgasm; and the last is Resolution, when your body returns to its pre-arousal state.” I explained to Mark that we would try to prolong the Plateau phase.
In order to keep himself in Plateau longer, Mark would also have to understand the arousal scale. “The arousal scale measures where you are in the Plateau stage. It goes from one to ten. One is the very beginning of arousal and ten is orgasm. It can be difficult at first to recognize the gradation, but with practice it gets easier, and it’s a good tool for prolonging arousal,” I said.
I grabbed a few tissues from my handbag and gently wiped away the semen from Mark’s penis and surrounding area. It was time to finish Sensual Touch.
I traveled up Mark’s abdomen to his chest and up his neck. I dragged my fingertips over his Adam’s apple and the left side of his jawbone. I circled around his eye and then down his nose and chin. Carefully, I made my way to his feet again.
When I finished exploring the front of Mark’s body, I walked to the top of the bed and started down the sliver of the left side of his back that was exposed. I traced my fingers over the shoulder blade and then down the arm. I returned to his back and lightly brought my hand down it and around his left buttock.
Then I returned to bed. “Can you tell me what parts of your body felt the most sensual?” I asked.
“It felt great when you touched my shins and my face, but to be honest, most of it felt sexual to me.” I wasn’t surprised to hear this. When people have been starved for touch and their sexuality hasn’t been recognized, their bodies can become acutely sensitive and any touch anywhere can feel arousing. My sense was that as touch became less foreign to Mark his body would respond to it in more complex and nuanced ways.
Mark asked if he could kiss my breasts. I lay on my side and softly brought my left breast to his mouth.
“Now, the other side,” I said in a tone of pretend seriousness.
I tipped my body over so that Mark could kiss my right breast.
Then he made the gulping motion that I’d come to realize meant he needed air. I hoisted myself up on my elbows and slid the breathing tube into his mouth. He drew a few breaths, smiling as he took in the air.
Three weeks later at our next session, the first thing I noticed about Mark was that his hair hung a little longer. “I didn’t get it cut because of what you said the last time,” he said. I remembered that I had commented on how silky his hair felt. I ran my hand over his head and said, “It feels just as wonderful as it did then.”
The bedroom window overlooked a bed of daffodils that spring had just started to pry open and I felt a bit sorry when I unrolled the shade and blocked them out.
Mark seemed calmer this time, and, frankly, I was too. The goals that we were striving for and the issues we would address were now much clearer to me than they had been in our first session. I would try
to help Mark lose his virginity and also help prepare him for a happy sex life if he found a partner. I still wasn’t convinced that a long-term relationship was in Mark’s future, but I could help him feel more confident if it was.
We chatted a bit about our last session. Mark said it was a little like going to college in that he could think of a hundred reasons why he couldn’t do it, but he did it anyway and he was happy he did. He also told me that he was at work on an autobiography and he planned to write about our time together. Then he announced that he wanted to try something new this session.
“I want to do something to pleasure you.”
“Well, I won’t argue with that.”
It’s not unusual for clients to want to give me pleasure. It’s a natural impulse. Most people don’t want to simply be passive recipients. They want to give as well as receive pleasure. As a general rule, unless it is something that doesn’t feel good to me or is something I think would interfere with the goals of the work, I allow clients to touch me when they ask. If a client has difficulty communicating with a partner about what she likes, it can be a perfect opportunity to model a conversation about her preferences.
Even before I undressed Mark I could see that he was fully erect. When I slid off his pants they caught at his stiffened penis and I had to stretch out the elastic waistband to move them past his groin. I undressed myself, and just as I was about to climb into bed Mark cried out, “Oh God, oh God, oh God,” and came.
Mark’s face turned so red that it looked like poppies had exploded under his cheeks. “It’s okay, Mark. Really.” I lay down and wrapped my arms around him for a few minutes. I could feel the rapid thump-thump-thump of his heart. “Do you remember the breathing exercise we did the last time?” We closed our eyes for a few moments and concentrated on our breath. I felt his pulse slow a bit.
An Intimate Life Page 2