I remember many years ago when Access Press founder and editor Charlie Smith said to me, “Oh, you able-bodied people! If you get old enough, you’ll likely have a disability.” Years later current editor Tim Benjamin asked me to write about my experience of living with disability that arose from having breast cancer.
“Who, me?” I said to myself “Am I a person with a disability? Am I a member of that group? Am I one of them?” Then I realized that I still had an able-bodied view of myself, even though a double mastectomy and lymph node removal from my right armpit has changed my life in many ways. As a result of my surgery I now face risk of lymphedema, the collection of lymph fluid in the tissues of the hand, arm and/or chest wall on the side of the breast surgery. This condition occurs when normal lymphatic drainage in the chest and arm is injured during surgery and/or radiation therapy, causing swelling of the hand, arm and/or chest.
For the rest of my life I must avoid any constriction or pressure on my right shoulder and arm. That means no more carrying backpacks or canoes, part of my previous life. No more heavy massage, despite being a body worker myself. No falls or blows, no repetitive work like raking, gardening, or painting, no injections in my right arm. I am very careful to avoid infections in that arm and hand from cuts or scratches. Broken bones are dangerous. I’m not supposed to heat up the core of the body in a sauna or hot tub. Any of these could trigger lymphedema at any time.
Because I don’t have breasts, buying clothes that fit can be a challenge. Undressing in front of other is something I am not used to thinking about. Will others be uncomfortable because I don’t have breasts? Or curious? Should I say something? What should I say?
I’m used to my body as it is now and am fortunate to have a partner who loves me for who I am. And Tim was right—I am a person with a disability. My cancer treatment was in 2001, but I was in denial until Tim called my attention to it. Denial is something I don’t like to think I have, yet there it was.
It’s important for me to examine what goes on inside my own mind about who I think I am and who I think I am not. What do I do with those whom I believe to be “other?” These are important questions for all of us, not only around disability, but cultural differences, religious beliefs, race, addiction, the homeless —whatever group we judge to be “different,” or somehow not connected to us, or whom we judge to be not worthy of compassion.
Navigating through the world I can generally “pass” for a person without a disability. Even though I grieve the loss of my breasts, I wasn’t a woman who dressed to emphasize them or felt they defined me as a woman.
I am a Rosen Method body work practitioner, with a focus on assisting people to deepen their connection to themselves. Sometimes, for a variety of reasons, we are unable to make useful and life-enhancing connections. It was the case with me around my denial about having a disability. What gets in the way of integrating a dramatic and traumatic change into our lives? Perhaps we don’t allow an experience to connect as new, and instead it gets glommed onto a past experience which we didn’t fully understand at the time it happened. Perhaps we stop the experience from being fully felt. Maybe the enormity of the experience was simply too much to be processed all at once. Sometimes, as in my case, the new reality may be something we don’t want to admit about ourselves.
Protective mechanisms can be helpful when we can’t integrate a new experience. If we fail to eventually process a difficult experience, it can manifest in a variety of painful ways: as chronic tension in the body; as an inability to access our emotions; as dissociation from body sensation; or as an inability to take in new experiences fully. The process I engage people in with bodywork is aimed at helping us know our own needs and feelings in relation to what happens to us in the world.
Accepting my limitations is important for my health and well-being on many levels—physically, emotionally and spiritually. Facing limitations helps me be realistic about what I can do. I now pace myself better, and try not to do as much physical work at one time. I try not to fix or “save” people in my work, reminding myself that it is enough to be loving and present and that I don’t need to give myself away or merge with them in order to “help” them. I trust their inner knowing to come forth when support is available.
Since my cancer treatment ended, it is important to keep current with myself, to keep processing the reverberations from my experience. This is what I need to do in order to keep myself alive to my life in the moment. I have found that it’s important to keep death close to me. Not being afraid of my vulnerability helps me be more compassionate for the difficult things, the things I don’t understand in the lives of others. It helps me to keep questioning my judgment of others, to stay connected to my heart and to keep my connection with myself, which makes it possible to connect with others. This is the gift of truth over denial.