We Are All Swans: Sexual Self Image in the Real World

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Whether by accident, illness, aging or the cards life deals you any time from birth onwards, at some point in life many of us face obstacles to sexuality.

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As our culture creates “reality” TV shows like “The Swan,” in which fundamentally healthy and able-bodied people go to great lengths to be made over as culturally defined sex symbols, the very real challenges to sexuality many people face remain invisible and unspoken. These include:

  • facing illness in youth and/or adulthood
  • becoming temporarily or permanently disabled as a result of illness or an accident
  • enduring loss or tragedy, be it with a job, a significant relationship or ones own capacities
  • living through trauma and the consequent obstacles one must face to heal
  • experiencing changes in hormone levels, bodies and libidos that come with the natural aging process
  • by nature, chance or inclination straying far from the socially acceptable definition of beauty and attractiveness.

A 47 year old woman who suffered from childhood sexual abuse and debilitating chronic illness in adulthood commented, “If you live long enough, you will be sick or something will be wrong with you. You’ll lose a job. You’ll have a serious accident. You’ll get sick. You’ll gain weight. How do we deal with this in a culture that worships perfection and youth?”

While I have always viewed sexuality as sacred and loving soul energy exchange, the language commonly used to describe sexuality is far from spiritual. Terms like “sexual performance,” “ sexual function” and “sexual dysfunction” mechanize and clinicize a deep and intimate human capacity. We are taught to expect erections on demand from men, and lose touch with other factors like emotional and physical well-being, a sexual-spiritual connection with self or a partner, self-esteem, stress and changes in the body due to the natural process of aging. Women are expected to look like teenagers throughout the life cycle sporting Playboy physiques in order to be attractive. As a culture, we have lost touch with feminine energy, feminine power, and the wide range of body shapes that occur in nature.

In the absence of conscious, holistic, experiential sex education, too many people learn about sex primarily from images transmitted through pornography on the internet and in magazines, or from the “thou shalt not” teachings of religious institutions. With all due respect for the new class of sexual dysfunction “miracle drugs” and the people they help, that we present sexuality as a commodity you can buy or a magic button you can press on demand dehumanizes the deeper and multi-dimensional aspects of sexual experience: love, intimacy, connection, spirituality and soul-based energy exchange.

In this backdrop, what happens to people who face real and serious obstacles to sexual relating? From the people I have spoken with who have faced and/or continue to face obstacles to sexuality, which in some cases also include obstacles to physical and emotional well being, the answer is not very heartening. Isolation, lack of community and a scarcity of resources and understanding often accompany the already challenging experiences of illness, disability, loss, trauma, aging and the like.

“We’ve become a throw-away culture, and sadly enough, that includes people,” reflects Brenda, a 55 year old woman who has suffered from polycystic ovary disease since she hit puberty. Polycystic Ovary Syndrome (PCOS) is a metabolic disorder that affects the female reproductive system in 6-10% of women. “If you have a disability, an illness, are suffering a loss, are very young or very old, you can easily become invisible or be thrown away as the ‘mainstream’ dominant culture charges on to quicker, easier and more perfect pursuits.”

Because of the importance of the topic, this past fall the Boston Area Sexuality and Spirituality Network (BASSN), a volunteer-run group dedicated to providing resources and education about the many dimensions of what it means to integrate sexuality and spirituality, hosted a program on “Overcoming Obstacles to Sexuality in the Real World.” At the meeting a panel of five individuals shared their stories of illness in childhood and adulthood, trauma, loss and aging, and how these experiences impacted their sexuality. Through sharing their stories and through group discussion, we pondered the question: how do people that suffer or have suffered illness, challenges or disability navigate the cultural and social challenges to intimacy and relating as a sexual being? With their permission, here are the stories of three of the panelists.

SEBOUH

Sebouh is a 28-year-old man who suffered a brainstem tumor as a child. “I was only seven years old when they discovered a benign tumor (astrocytoma) attached to my brainstem. It could not be completely removed due to its location since the brainstem is responsible for many vital functions as such as breathing, heartbeat, and other functions that if disturbed could lead to major paralysis or even death. The doctors wanted to preserve my quality of life.” Surgery was done in 1984, leaving some residual behind, and in 1986 Sebouh underwent a heavy dosage of radiation to stop the tumor regrowth. For the next ten years things were smooth. Sebouh succeeded at high school and went to college as a biology major, with the long-term vision of being an eye doctor.

Sadly, both the residual tumor and a hematoma (a side effect of earlier radiation) caused a string of further complications, surgeries, and finally a cerebellar hemorragic brainstem stroke in 1999. The surgery required to stop the bleeding, as well as damage from the stroke, led to permanent impairment to many basic capacities including coordination, gross and fine motor skills, paralysis, balance, vision and speech. Sebouh not only had to give up his dream of being an eye doctor, but also found himself faced with great physical challenges to overcome, and huge barriers to leading a normal sexual-social life.

“How does a person who is young handle the trauma of serious illness and its lasting repercussions: disability and physical limitations? And how do I live having once been able bodied and now being disabled?” asked Sebouh.

“I think the greatest challenge a disabled person faces in developing a sexual self is finding a special person who is open to what people with disabilities might be facing. In today’s society it is not an easy task to find that special person who cares about what you had to face, who understands your physical limitations, whether in sex or any other areas. Many people are afraid to build a relationship with someone who is disabled.”

“We need more places where people with disabilities can dialogue about sexuality and relationships,” acknowledges Sebouh. “All human beings are sexual. We all need love and affection. Many people lose their confidence after going through such a traumatic event as I did. But you have to remember not to give up.”

JEREMY

Jeremy is a 47-year-old man, who like Sebouh, experienced a benign tumor as a child. While his illness did cause lifelong ramifications, they are not nearly as disabling as Sebouh’s.

“When I was in the 5th grade, around age 10, I started to have headaches, but I didn’t let anyone know about them. They went away towards the end of the year. However, my growth slowed. By age 12, others had sprouted, but I had not. I went from being one of the bigger boys to one of the smaller ones. When I was 14 doctors realized this wasn’t a delayed puberty, and they ran some tests, including a pneumoencephalograph, a painful precursor to today’s MRI’s and CAT scans, where they inject air into your skull so they can photograph it. It turned out I had a benign pituitary tumor. I did a summer of x-ray therapy to be sure it was killed off. After that I was treated with hormones.”

“It was believed at the time that if you were on testosterone directly, the gonads would shut down and you couldn’t have children. So my parents chose injections two to three times each week. A doctor discovered growth hormone, and I was on it.” While Jeremy did eventually grow to 5’8”, that was far from the 6’ height he had imagined he would attain prior to the tumor. Being tall was a significant part of Jeremy’s masculine identity, so having his growth curtailed damaged his self-esteem.

Going through both the personal and medical ordeal, Jeremy bore the pain alone. “I had learned to become hypervigilant to hide what I felt about it. I didn’t like going to hang out in social situations where people explored dating and sexuality. I hadn’t been initiated into puberty. I felt a lot of rage and bewilderment.”

“As a young man I continued my withdrawal for survival even after the tumor was removed and puberty was initiated via the hormones. I felt way behind my peers, lacked confidence, was terrified of women and sexual encounters. In time I came to realize this was quite common, including my fear about penis size. But more importantly, I feared the girls would laugh at me for my lack of knowledge of sex. I was too afraid of being mocked to even risk dating.”

Through courage and determination, Jeremy underwent a lot of personal growth work to overcome his fears and pain, and develop a sense of himself as a complete man. Through a wide variety of personal growth workshops, some with just men and others with both men and women, Jeremy healed his sense of manhood and his relationship with women at many levels. “I discovered I wasn’t such a lost man as I thought. There were other men I could relate to. I learned I could let myself feel and still be accepted. I have been able to share my fears and shames with women and discovered they respected and honored me for it. I’ve found heart-connectedness from women and love for me that I never dreamed could have existed. Therapy was also helpful and prepared me for the transformation workshops.”

In reflecting back on his experiences, Jeremy comments, “I think our community is lacking in safe places and opportunities to grieve. I think most people wait until they are alone to grieve when it should be a community experience. At the same time, grieving can lead to the abyss of self-pity in which case the loss is an excuse for not moving forward.”

Looking at Jeremy’s experience, when illness sets back emotional-sexual-social development, regardless of one’s chronological age, one still needs to have necessary experiences to finish growing up. “For my own struggle to grow up after the fact, the best support came from the hardest people who didn’t accept excuses and told me to get the job done and quit feeling sorry for myself.”

BETH

Beth is a 47-year-old woman who now realizes that the sexual abuse she suffered as a child is at the heart of her mind-body trauma illness. Although the abuse impacted her in many ways, Beth didn't fully comprehend the magnitude of its effect until her healing process began at age 35. "My mother drank and had a dissociative illness. To the best of my knowledge the abuse began when I was an infant. She was an episodic offender. When we was under a lot of stress, she'd molest me. I became consciously aware of this when I was seven, and instead of dissociating during an episode of abuse, I realized what was happening to me."

Beth experienced a litany of physical problems that all ties back to childhood sexual abuse. She developed scoliosis. She started menstruating but stopped at 14. Her growth stopped as well, but was restored by taking thyroid hormone until she entered college. “In retrospect, I didn’t want to be a woman. In my house it was unsafe. I had a growth spurt in college at 19, grew to 5’4.” My breasts grew three sizes.”

The most severe and disabling illness originated with recurrent bladder infections and back problems. “I gave up for twenty years. All the doctors gave contradictory advice. I gave up on all of them except for yoga, which helped. I finally got to a point where I felt good, was in a relationship that was hopeful, and then I developed another bladder infection. I could hardly walk. I had interstitial cystitis. I had never heard of it. All I wanted was for my bladder to stop hurting. I was in chronic pain.”

In addition to the interstitial cystitis, Beth had vulvadynea, an inflammation of the tissues and nerves of the genitals, chronic fatigue and chemical sensitivities. “All these ailments were hooked up with each other. I felt like my body was rotting. The worst thing was that nobody was worried about it. Other than suicide, it’s not fatal! The medical system doesn’t get it about pain.”

“What saved me was the Internet and hooking up with other people suffering from interstitial cystitis and the other ailments I was suffering from. I found out from other patients that pelvic floor physical therapy helped some people. I started this treatment and saw the relationship between my knotted up pelvis from sexual abuse and my pain. The incest had tightened me up so much it started this pain and disease process. Eventually the whole middle of my body was turning into concrete. The bladder nerve endings were crushed and squeezed.”

The illness took its toll on Beth’s primary relationship. “The man I was involved with stuck with me through the hard part. However, the better things got, the worse the relationship got. He didn’t know how to get the support he needed. It was traumatizing for him.”

Beth has worked diligently to heal, creating her own treatment plan, integrating treatment methods that have made sense to her. She has recovered significantly and has had no bladder pain for three to four years. “It’s really hard to change what’s been going on since you were very young. I still feel permanently traumatized by the physical pain I went through and go to physical therapy a few times a week. If I’d had adequate pain management, things would have been different.”

Beth was able to finish college, which had been interrupted by the trauma pattern in her body during her college years. She has started dating again. She is much more able to consider what she really wants for her life, rather than spending all of her energy fighting pain or trying to heal from pain.

FINDING RESOURCES

The kinds of serious challenges discussed in this article provide an opportunity to crack through to the soul. “What is keeping people from the sacred act of sex is distrust and old hurts,” acknowledges Brenda. “I think people need to learn how to touch each other in precious ways. I think we need to move society away from commercial and soul-less influences on our sexuality. Through sex-positive dialogues and community support, we can overcome the sex-spirit split, sex-negative and anti-aging messages that bombard the airwaves.”

Psychologist and sex-spirit researcher Gina Ogden points out, “We are all facing obstacles to sexual-spiritual identity whether we are challenged or not. When you get sick, disabled, old or grieving, does your desire for sex decrease? Possibly? Does that matter? Maybe. How does society treat you? As if you’re asexual.” This is unfair and often untrue.

In her nationwide survey on sexuality and spirituality, Gina found “both men and women report more sex-spirit connection as they grow older. What they mean by this is 1) they’ve moved beyond religious and cultural sex-negative messages, and 2) they’ve gained the maturity to value the relational richness in long term partnerships and the courage to value their new and perhaps occasional partnerships without fear or worrying about turning them into a conventional form.”

Brenda recalls, “One of the greatest examples of sexual-spiritual exchange is found in the film, Cocoon, when the lead male is loved by the spirit of an alien who only could have relations at the core of our being. This was merger fully and totally that surpassed orgasm. I think this kind of exchange is truly possible when people truly love each other.”

When working to overcome obstacles to sexuality, the following resources are often valuable:

  1. Community. It makes a huge difference when someone facing an illness, disability or other challenge to sexuality is surrounded by supportive community. Isolation is its own disease, making already challenging circumstances even harder to overcome.
  2. “Out of the box” solutions. Jeremy notes, “People who have faced challenges both to their overall health and their sexuality need to be able to go to a space that is freed of the constraints of ‘mainstream’ society morals, i.e., intimacy only in marriage or monogamous relationships. We hunger for intimacy in a way most people can’t imagine, not necessarily because we get less of it, but because we think we do.”
  3. Education and sensitivity training for medical professionals working with people facing sexual challenges. All the BASSN panelists suffered at the hands of sometimes even well-intentioned medical professionals who simply lacked information and understanding of the person’s situation, treatment or condition, and/or displayed insensitivity to the physical, emotional and spiritual pain they were suffering.
  4. The Internet. Searching the Internet provides both educational information plus the connection to a network of others going through similar experiences.
  5. Learning to touch each other deep inside. In our touch-illiterate culture, we starve for safe, nurturing, and intimate touch, both emotional and physical. Through creating an emotionally safe climate, learning to speak and listen from the heart, and learning the language of physical touch, we can feed each other’s hearts and touch each other’s souls.

Linda Marks, MSM has practiced heart-centered body psychotherapy for twenty years. She is the founder of the Boston Area Sexuality and Spirituality Network and the author of Living With Vision: Reclaiming the Power of the Heart (Knowledge Systems, Inc, 1989) and Healing the War Between the Genders: The Power of the Soul-Centered Relationship (HeartPower Press, 2004). She leads groups and workshops that provide soul-deep healing in community, including programs on integrating sexuality and spirituality and sacred and erotic touch. You can reach her at (617)965-7846 or This email address is being protected from spambots. You need JavaScript enabled to view it. or http://www.healingheartpower.com.

The Boston Area Sexuality and Spirituality Network holds monthly meetings on a wide variety of topics. You can learn more about BASSN by going to http://boston.sexspirit.net.

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