Quality of life
Traditional measurements of quality of life include a social integration factor (like the number of friends contacted per month), but sexual health and sexual relations are not measured. Social integration does not measure relationship satisfaction. People can be socially integrated but still feel emotionally isolated.
According to researchers Gill and Feinstein, quality of life as defined and experienced by the individual with a disability was extremely important — sometimes more important than employment, income or functional measures.
In a study called “Objective and Subjective Handicap following SCI,” the authors noted 32 participants out of 126 who were assessed one year after their injury consistently gave low satisfaction ratings to love and sexuality — a topic not even addressed in the conventional questionnaire about community integration. The authors concluded, “To understand quality of life, more information on private activities — including intimate relationships and sexuality — may be needed.”
Karen Hwang, M.Ed., studying disability and attachment in personal relationships, found people in a relationship were generally more satisfied in their lives than those who were not. Her findings underscored the importance of secure, intimate relationships to individual quality of life for people with disabilities.
When measuring outcomes of quality of life assessments, a clear need exists to incorporate individual subjective ratings of the quality of intimate relationships, sexuality and spirituality in the lives of people with disabilities if they are to have practical relevance.
Another important element of quality of life ignored in traditional measurements is spirituality. A colleague recently told me he believed sexuality and spirituality were two different and unrelated things. He felt sex is of the flesh and spirituality is something else. I disagreed.
My perspective was based in the philosophy, history, science, medicine, psychology and human experience of sex. This was grounding that led to a spiritual plain, for it is in the realm of the spirit that we feel love.
An important emergent theme from my research on pleasure and orgasm in people with spinal cord injuries was what I called connectedness.
When I asked people about the effects of SCI on their sexual response or activity they responded it was not the same or no longer felt “normal.” Diminished sensation, lack of escalating arousal, and an inability to orgasm made masturbation and sex with a partner seem pointless, reaffirmed unexpressed beliefs of asexuality, and led to feelings of “why bother?”
There was a need to be with a trusted sexual partner for safe sexual exploration and peak sexual experience, including pleasure and orgasm. The most pervasive reasons were the excitement gained from pleasing or satisfying a partner, feelings of connectedness or complementary sexual energies, and identifying sex with a sense of intimacy and as an expression of love rather than a pleasurable release.
These findings lead to my theory on sexual pleasure and orgasm in people with SCI, that the ability to experience orgasm in SCI is the culmination of a process of sexual self-discovery that reflects sexual self-discovery before injury within the larger sexual culture.
This process of sexual self-discovery includes reestablishing a sexual relationship with yourself and others in the context of a changed body, changed life and changed interpersonal relationships. This process unfolds over time with the ability of participants to move from what they described as “sexually devastated” after injury to “ecstatically orgasmic” years later.
When people focus all their attention on the details, they miss the essence of the phenomenon. Looking only at the physical, they miss the reflection on a spiritual level. Spiritually, we yearn to feel as one with another. When we are at one with another we feel whole, we feel what we have to offer has value, we feel desirable, and we feel worthy of love.
When I was in Boston, I met with a friend I hadn’t seen for a year. He told me a lot of bad news. I asked him what good had happened in his life and his face lit up, saying he had a new love interest. The tone of the conversation changed when it switched to her. He said everything else seemed less important with love in his life. When we are in love, and we feel connected with others, we have less of a tendency to focus on our own problems.
We want to connect in mind, body and soul. In Judaism, the sun, moon and stars are described as results of God’s creation, of God’s light. In the story of Genesis, God said, “Let there be light,” so light was the first creation before the celestial bodies. God is the source of all creation and hence everything is connected.
According to Jewish mysticism, or Kabbalah, light is a metaphor for the divine influence. Our souls came from a high spiritual world yearning to experience the divine light known before entering the physical realm. To experience the divine light of creation is to experience great happiness, great joy and love.
The concept of light and connection isn’t limited to Judaic or Christian perspectives. In the Tantric tradition, sex is transformed into love, love into meditation, to light, to knowledge of the divine.
Three elements generate euphoria, ecstasy and bliss: Being “timeless,” one is in the moment, not comparing to past experience or focusing on future expectations. Being “egoless,” you become one with your partner or the universe, not an individual limited by physical disability or negative thoughts. Being in the “natural state,” described by the Indian religious leader Bhagwan Shree Rajneesh, “The unreal is lost; the facade, the face, is lost; the society, the culture, the civilization is lost. You are part of nature, as trees are, animals are, stars are. You are in a greater something — the cosmos.” You are connected to the universe.
Disconnection from others leaves the focus on ourselves. Our minds fill with negativity and we dwell on our problems and pain. When we are disconnected we fail to communicate our fears and miss opportunities for new perspectives.
Rabbi Pesach Wolicki relays one of the best-known episodes in all Biblical text, the killing of Abel by his brother Cain. Cain was a farmer and Havel a shepherd; each brought an offering to God. God accepted Havel’s offering and rejected Cain’s. Cain became angry and depressed and murdered his brother. Cain’s punishment was that he would forever be “unsettled and a wanderer on the earth” — to be forever lonely, longing for connectedness and never finding it.
‘All I know is that I am miserable’
A wife wrote to me in desperation asking for help for her husband who had sustained a spinal cord injury a year after they married.
“He said that he pretty much is not interested in sex anymore.” (Avoidance) “I try to be understanding and assure him that to be even cuddled or for him to hold my hand and talk a bit would be wonderful … but he refuses to even do that.” (More avoidance) “He does not touch me at all.” (Disconnection) “When I go up to even hug him goodbye he pushes me away as soon as he can.” (Anger) “I have begged him to go to marriage counseling with me to get help but he refuses.” (Arrogance) “This has gone on for years and to be honest I feel like I am going to go insane. His refusal to even try to work on our problems has made me resentful and I have stopped even trying.” (Created a barrier to human relationships) “I live in one part of the house and he lives in the other and we don’t spend time together at all without fighting. I just don’t know what to do anymore. All I know is that I am miserable.” This marriage ultimately ended in divorce.
Common reactions to loss associated with acquired disabilities include avoidance, anger, a loss of sense of self, an inability to let go of the past and move on, and a loss of faith in God. Ego, arrogance, avoidance, anger, complaints and Godlessness are all barriers to establishing a sense of connectedness that is central to healthy sexual relationships.
Disconnection as a barrier to intimate sexual relations
The stories of Paul and Patti illustrate their sense of disconnection while Greg’s story shows connection.
Paul, who had an accident three years before our interview, said he felt sexually disconnected. He had attempted intercourse with his wife three or four times since his accident. He was able to penetrate and maintain an erection once or twice. He said he felt he had lost 90 percent of his libido.
“You know when they say men think with their dicks? It’s really true,” Paul said. “When you don’t have the sensory stimulation of your genitals, it’s like all my libido stuff is failing. … I’m really not interested.” He said his wife understood he had no feeling. “She’s real clear that there’s no feeling and that as far as I’m concerned, it might as well be a dent on a fender. That’s how disconnected it is for me.”
Men are not the only one’s who put up barriers to protect themselves. I interviewed Patti, a 45-year old woman with an incomplete C6 spinal injury. At the time, it had been 17 years post-injury. She was married but not living with her partner. Patti’s story detailed her disgust with her sexuality in the years after injury and her quest to reclaim her sexuality. For the first two years, Patti hated herself sexually and had no partner. As she mastered her daily routine she mourned the loss of her sexuality. Enrolling in a sexuality course at a local college was a turning point. She said, “I felt like a failure … I thought, I can’t even masturbate … What can I do?”
Patti’s sexuality was tied in closely with her self-image of femininity and attractiveness. Until that point she had barriers to intimacy. She described herself as comfortable but unhappy, not knowing and wanting more. Meeting a man who she felt safe with allowed her to feel comfortable enough to start the process of sexual self-discovery.
Greg said he enjoyed connecting with his partner and sensing what she’s feeling and experiencing.
“I’m really into the evolution of the process,” he said. “I think of it as a facilitating experience for my partner. It becomes more intense, through my connectedness with my partner, as she becomes more aroused. It’s about being aligned in this, a sort of sensual dance. I find I have the ability to be aware of my partner’s response, which is arousing for me. It’s like drafting, when you get behind a big truck on the freeway and get pulled along. This is how I thought about my sexuality with a partner, that I sort of latch onto her orgasms. If I can’t have it fully myself, then I’ll share it with her. So I’m very invested in my partner’s orgasm. In the context of shared intimate space with somebody else it’s about loving each other rather than making himself come. I think a lot of sexual response just comes from the sheer energies that come out of just being with a person.”
Where does the answer lie?
If disconnection and factors that result in disconnection are barriers to intimate sexual relations, and intimate connected relationships are important to quality of life, where does the answer lie? Again I looked to matters of the soul.
According to Mindy Ribner, a therapist and leader of Jewish Meditation groups in New York, all the laws around the observance of Passover and the whole ritual itself is designed to facilitate the movement to greater freedom in one’s life. Mindy explained that during Passover we become aware of our situation, acknowledging our brokenness, acknowledging our losses, acknowledging our vulnerability, acknowledging our humanity and acknowledging our shared dependence on God and on the goodness of others as we are all connected. The same humility and ability to be present in the moment that enables us to taste freedom will enable us to establish or maintain affirming relationships and positively impact quality of life.
Tantra embraces a similar theme. According to Ray Stubbs, author of “The Essential Tantra,” sensuality, sexuality and spirituality begin within us. Barriers to these experiences during sex include concentrating too much on performance and not enough on sensations, judging others, making comparisons with the past to invalidate the present and focusing on expectations instead of the richness of the moment. Allowing, rather than striving, is the key to acknowledging that the medical model of sexual relating does not bind us.
The art of loving
What balances the physical and spiritual is the artistry of love richly detailed by Erich Fromm in his 1956 book “The Art of Loving.”
Drs. Whipple and Komisaruk define love as “having stimulation that one desires.” This definition encompasses having an emotional bond with a person for whom one yearns, as well as having sensory stimulation that one desires. They concluded, “The better is our understanding of love, the greater is our respect for the significance and potency of its role in mental and physical health.”
Taken up a notch to a spiritual plain, Rabbi Israel Schiff defined love as the emotional pleasure one feels when one finds virtues in another human being and identifies that person with those virtues.
The Western view of love is embodied in Greek mythology, with the vision of Cupid shooting his arrow into the heart. When love is focusing on virtues of another person, it is intellectual, it is our choice, we are in control. The truth of the matter is, Cupid’s arrow usually strikes us in the genitals.
Love in its highest form can be all-powerful. Victor Frankel in his compelling book “Man’s Search for Meaning,” vividly accounts how love allowed him and others to survive the most horrid of conditions and treatment in Nazi concentration camps. Disability or tragedy serves a litmus test for love.
Love, trust and sexuality
Love requires conscious intention, energy, work and time. Translated into trusting fully, sharing openly and honestly without fear of reprisal, allowing room to grow and change; showing mutual respect, accepting your partner completely for who he or she is, risking being vulnerable with your partner and paying sexual attention to him or her.
Realistically, there are people who care more about physical qualities when looking for an intimate connection. Others are attracted to a myriad of other virtues, nothing to do with physical appearance or ability, such as intelligence, personality, humor, deep reflective thought, creativity, kindness, goodness, integrity and spirit. There are millions of single, able-bodied people wanting a partner but unsuccessful at meeting the right person. Finding the right mate is not a problem exclusive to people with disabilities.
According to Fromm, the golden rule has become distorted. Doing unto others has more to do with fairness than love. Fromm argues that we must be able to love everyone before we can love any one. We must be open to love before we can identify potential partners.
Spiritual aspects of sexuality transcend the physical and the knowable. In a spiritual sense, the meaning and purpose of sexuality can be conceived as a means of connection.
In an ideal world, we learn to love others and ourselves without any input from the genitals, without any pressure from outside sources to perform sexually or to be physically perfect. We learn about sex and sexuality from our family, from schools and from religious institutions that reinforce the concepts of intentional love, understanding and valuing uniqueness, acceptance and connectedness. Without input from the genitals, it becomes easier to see the emotional and spiritual aspects of sexuality.
Then if we introduce pleasurable sexual sensations from the genitals, this gives positive reinforcement experienced through the body and appreciated in our minds. It becomes a cherished part of who we are, of our existence. The physical and pleasurable aspects of sex become important and provide added joy to the emotional and spiritual.
If we took the pleasurable genital sensations away, one would experience great loss. Yet the emotional and spiritual aspects of sexuality still exist, from which we relearn new ways to experience physical pleasure. Just as we learned to experience pleasurable sensations from our genital experience we can learn to experience pleasure from other parts of our body both physical and energetic.
We learn truth from the greater culture that sex is purely about pleasure in the genitals. When that focus is missing, we learn another truth about sexuality.
Taken to the otherworldly level, sexuality is a vehicle for spiritual connection. Spiritually, the joy of sexuality can be achieved when we can connect with others or the universe with our hearts, energy and passion. Spiritually, one may view sexuality, like life itself, as a gift, and while it may feel good in the genitals that is only a small part of the truth.
Sexual health, relationships, spirituality and quality of life are the truth, not an oxymoron!