By Frederick Mills
In an interview on the highly acclaimed DVD entitled “Fierce Grace” Ram Dass was asked about the stroke he experienced in 1997. He said, “It was a test. I flunked.”
I can relate. When I was diagnosed with prostate cancer in 1991, I fell apart.
Besides my panic and denial, the most difficult things to adjust to were the fear that I was going to die, that I would suffer beforehand, and, worse, that I had lost my manhood and might die without ever having sex again. Zoicks! Embarrassing! These feelings overwhelmed me even though I thought of myself as a fairly spiritual and aware guy.
About a year after diagnosis and treatment everything about life seemed so unattractive and dull. Now divorced and living aboard my sailboat in the south Puget Sound, I knew something was missing—I felt this longing that wouldn’t go away. To do something about it, I formed a local prostate cancer support group and, while our group was for men, we opted to include women as well. Surprisingly, some men quit the group over this, but I found that having wives and significant others with us really added a lot to our discussions.
During these meetings, as we men struggled with the everyday issues of dealing with our disease, most of us remained very concerned about our sex lives as well. We were fearful that our reduced performance, or, in many cases total impotence, would affect our relationships with women. Meanwhile, I began to notice that what seemed to matter to women went way beyond any worries about sexual performance. They were more interested in the big picture. On some level I’d always had a sense this was true, but it was surprisingly freeing when one of the women in the group stated that she was more concerned about how they as a couple were going to weather their predicament and incorporate disease into their lives than she was about how the disease was going to affect her sex life. Sustaining intimacy within the reality of a cancer diagnosis was what mattered to her.
Answering the Call As time went on I became involved on a national level with prostate cancer patient advocacy and support, and, in 1995, I was invited to take over as Assistant Director of Patient Advocates for Advanced Cancer Treatments (PAACT), located in Grand Rapids, Michigan. During my time there, I had the privilege of counseling thousands of patients and their families through patient hotlines. It was in the course of these interviews that I truly became aware of the relationship between intimacy and disease.
The first people that I typically encountered in assisting families were the women. They were total advocates for their partners. They wanted to know everything about the disease: what types of resources were available and where, who the best doctors were, what they and their partners could expect as they progressed from the initial diagnosis into the treatment phase. I learned firsthand what I had glimpsed in the earlier support group—that true intimacy was experienced and expressed in ways that profoundly exceeded those of a strictly physical relationship. I couldn’t help contrasting this with the assumptions contained in my head before the onset of my own disease, when I mostly thought of intimacy as a sexual byproduct. Yet here were all these people, directed by their strong sense of caring, dealing with the problem in a very assertive way. This was engaged intimacy, no byproduct here.
At first, of course, everyone in these beleaguered families was upset and in denial that cancer was now part of their lives. Adjusting to the demands of the disease was disruptive and stressful. Yet, as time went on and they began to engage the problem, they reported a definite turn for the better. Many became energized and extremely knowledgeable as they empowered themselves to effectively navigate the more intimidating aspects of dealing with doctors and the medical system. They no longer felt overpowered by their experience.
Many began to refer to their cancer diagnosis as the wake-up call of their lives. They told me that, in spite of serious problems, they found themselves drawn closer by their experience, not driven apart. As for the sexual consequences, the counter-intuitive thing had happened. Even if physical sex was still possible for some men after treatment, the more important thing to them was just being listened to, understood, touched and held. The initial fear, that lost or diminished sexual capacity meant life as a man was over, proved baseless. On the contrary, most partners reported a closeness and level of intimacy they had never had before the diagnosis, and it seemed to enliven all aspects of their relationship, and their life.
Not all after-diagnosis stories went so well of course. There were people who couldn’t make the transition, and their new predicament, with illness and other afflictions, was the final straw that broke the back of their relationships. Some, after a lifetime of personal neglect, or maybe as a result of circumstances beyond their control, found themselves isolated, separated, and alone. These people ended up facing their mortal challenge with little or no support from friends and family, either because they had none or because their relationships were so deteriorated that no one was willing to help. Such situations were always the most difficult to deal with, especially when trying to help long distance over the phone.
I remember one man with metastatic disease to the bone who needed to get to the hospital. He could barely walk and was in extreme pain. He told me he had a sister somewhere in the same city, and with difficulty I managed to track her down. After my urgent request, she reluctantly agreed to give her brother a ride to the hospital. I never heard from them again.
Imagine being in that situation, cut-off and isolated from even the most rudimentary of caring. How distant intimacy can seem when circumstances of isolation and separation have closed in so tightly and finally around us.
From all of these experiences, I learned the value of investigating and unraveling the ties that bind us—either to life-affirming intimacy or life-denying isolation.
Getting Real In Buddhism, enlightenment is called the unconditioned, that which shines out naturally when the heart is not entangled in the forces of grasping, hatred and ignorance. When the heart is free of these forces, true intimacy and love are revealed. It’s here all the time, really, we’ve just got to make the effort to uncover it.
I certainly witnessed this in the open-hearted caring of the many patients and families I met and counseled. As they continued to open up and “let go”, they found their lives enhanced beyond anything they could have imagined in their former “normal” lives. People reported exploring their spiritual nature again after years of having lost touch; they talked about becoming more aware of the precious mystery of life, and held a much deeper appreciation for themselves, their families, and for living in the moment; they talked of being more forgiving of themselves and others, and being more spaciously open to the ups and downs of life. They saw their partners in a whole new light. One man told me how he always thought he knew his wife, but now he wasn’t so sure. There were qualities revealed in her he never imagined were there and it was a compelling mystery to him that he was quite excited about. I’ve heard such testimony time and again from both men and women who described a renewal of their relationships. A mystery had re-entered their lives that stemmed back to the diagnosis of cancer. Like I’ve said before, painful and frightening circumstances can be powerful motivators for our starting to get real in our lives. Turning inward toward our hearts, we get a way more exciting ride than anything offered at the best amusement park.
All of this has certainly been true for me. After diagnosis and the shock of finding that my life would NEVER be the same again, when I could finally stand face to face with my own mortality, I started to understand how fragile and precious my life really is. Maybe for the first time I appreciated the uniqueness of each day, knowing that each person in my life will never be seen this way again. I couldn’t take things for granted like I used to. Being able to share these rare perceptions with another somehow made them more real. The other day I related to a special person in my life that, more than anything, being held, understood and listened to was the most intimate expression of caring I could think of. Nothing extravagant, just a simple presence in the moment with an open heart and no agenda.
Evidently I have come a long way since the days when I thought of intimacy as a byproduct of sexuality; however grudgingly, I have to thank prostate cancer for that.
Intimacy Revealed There is a powerful force inside us that knows we are connected to all things. Instead of closing down in fear we can use our present situation to open up, and when we do we are brought back in touch with what intuition told us was there all the time. Our relationships become more vibrant and open and we’re able to traverse our personal storms with a certain grace and ease. It embodies a kind of warrior nature that embraces difficulties instead of protecting against them.
I can see that nothing in this life is perfect. Our bodies aren’t perfect, our relationships certainly aren’t perfect, and our minds, well . . . . Knowing this takes a lot of strain out of being human and frees us to refine our connection to self and others. When we know we’re not perfect we can begin to sow the seeds of compassion, mercy and forgiveness. Surely intimacy grows from such humble seeds.
Regarding our imperfections, Leonard Cohen says it all in these lyrics from “Anthem:” Ring the bells that still can ring Forget your perfect offering There is a crack, a crack in everything That’s how the light gets in.
Whether we follow our Buddha nature, the heart of Christ, or any other heart path, uncovering intimacy is the real opportunity hidden in the shock of dealing with affliction and mortality.
May all beings everywhere be free from suffering.
Frederick Mills lives on his boat located in the south Puget Sound. He has worked with various service groups assisting cancer patients and is a founding board member of the National Prostate Cancer Coalition. You may reach Fred c/o [email protected]