Are All Swans: Overcoming Obstacles to Sexuality in the Real World
©2005 Linda Marks
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. 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
o becoming temporarily or permanently disabled as a result of illness
or an accident
o enduring loss or tragedy, be it with a job, a significant
relationship or ones own capacities
o living through trauma and the consequent obstacles one must face to
heal o experiencing changes in hormone levels, bodies and libidos that
come with the natural aging process
o by nature, chance or inclination straying far from the socially
acceptable definition of beauty and attractiveness.
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?"
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, losing
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.
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.
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.
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 disabiity, 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."
of the importance of the topic, this past fall the Boston Area
Sexuality and Spirituality Network, 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
explored issues of childhood illness and its ramifications on
emotional-sexual-social development, permanent disability and the
challenges to finding intimate partnership, aging and its impact on
libido and sexual capacities, job loss and obesity and their impact on
self-esteem, cancer and how both the illness and the treatment effect
sexuality, and sexual abuse and its correlation with physical illness
and chronic pain. With their permission, here are the stories of three
of the panelists.
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, heart beat, 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 and some
residual tumor was left behind.
in 1986 there were signs of tumor regrowth and Sebouh underwent a heavy
dosage of radiation to stop the 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.
both the residual tumor and a hematoma (a side effect of earlier
radiation) caused a string of further complications and surgeries. The
most impactful complication was 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.
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
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 care 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. Hopefully, there will be someone out there who will be
able to see my inner beauty. "
need more places where people with disabilities can dialogue about
sexuality and relationships," acknowledged Sebouh. "Most of the support
groups I have found are medical-based. For example, a support group for
people who have had strokes. I think we need more groups that
specifically address sexuality, relationships and barriers to intimacy
when you live with a disability. 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."
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."
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
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."
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 knowlege of sex. I fantasized about
just being one of them--being kind, gentle, patient and understanding.
But I was too afraid of being mocked to even risk dating."
courage and determination, Jeremy has done 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, Jeremey has
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 found that
there were women who found me attractive and responded to my emerging
masculinity. I've found heart-connectedness from women and love for me
that I never dreamed could have existed."
was also helpful and prepared me for the transformation workshops. And
in a gender-balanced therapy group, I was first able to share with a
woman how hard it was for me to be in the presence of an attractive
woman, that I didn't know where to put my desire and lust. All I knew
how to do was bury it and wear a frozen mask. Acknowledging that opened
me up to other experiences."
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
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.
is 47 year old woman who now realizes that the sexual abuse she
suffered as a child is at the heart of a mind-body trauma illness
story. "I didn't know until I was 35 that I had been sexually abused by
my mother. It impaced me in many ways. My mother drank and had
dissociative illness. To the best of my knowledge the abuse began when
I was an infant. She was an episodic offender. When she was under a lot
of stress, she'd molest me."
experienced a litany of physical problems that all tied 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
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 them, except for yoga,
which helped. I felt good, was in a relationship that was hopeful, and
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."
addition to the interstitial cystitis, Beth had vulvadinia, an
inflammation of the nerves of the bladder, chronic fatigue, which is
nerve-related, and then 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."
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 turning into concrete. The
bladder nerve endings were crushed and squeezed."
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."
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. "Sometimes I have to pee a lot. Sometimes I have fatigue and
sore muscles from my back rearranging itself. I still go to physical
therapy a few times a week. 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. If I'd had adequate
pain management, things would have been different."
Beth doesn't yet know if she'll recover fully, she keeps getting better
and better. She was able to finish college, which was 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.
OBSTACLES TO SEXUALITY: FINDING RESOURCES
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," acknowledged Brenda.
I think people need to learn how to touch each other in precious ways.
I think we need to move society away from commerical and soul-less
influences on our sexuality. Though sex-positive dialogues and
community support, we can overcome the sex-spirit split, sex-negative
and anti-aging messages that bombard the airwaves.
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.
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 occassional partnership without fear or
worrying about" turning them into a conventional "form."
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
when working to overcome obstacles to sexuality, the following
resources are often valuable:
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.
"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."
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.
The internet. Many of the BASSN panelists found both information and
others going through similar experience through searching the internet.
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
Linda Marks, MSM, has practiced body psychotherapy with individuals,
couples and groups for more than twenty years. She is the founder
the Boston Area Sexuality and Spirituality Network and is the
of Healing the War Between the Genders:
The Power of the Soul-Centered Relationship
(HeartPower Press, 2004) and Living With Vision:
Reclaiming the Power of the Heart
(Knowledge Systems, Inc, 1989). She can be reached at
LSMHEART@aol.com, www.healingheartpower.com or (617)965-7846.