Dr. Susan Massad is a retired Doctor of Internal Medicine of 51 years. Dr. Massad's focus was Doctor - Patient communication and the relationship in general. She continues to lead workshops and conversations through the East Side Institute on creative aging, health and wellness and issues of dementia, death and dying. Susan has recently published a play about dementia, "Remember Remember" and co-directs a Senior Performance Improv Group at the All Stars Project in New York City.
I was first diagnosed with breast cancer in 2010. A fit and healthy 73-year-old practicing physician I was not high risk and was determined that this problem was not going to slow me down. The cancer was low grade, hormone positive and easily treated with an uncomplicated lumpectomy and three weeks of radiation therapy. Aside from being acutely aware that I was joining the ranks of one in eight woman in America with breast cancer, my remembrance of the impact of the experience is that it was somewhere between having a bad flu and a sinus infection. I was a lucky one, my cancer genes favorable for cure and I was able to return to work almost immediately. Four years later the cancer returned in my thoracic spine, and I was unprepared for the intensity and pain of the recurrence as I quickly moved up the ladder from stage I to stage 4 cancer. I am now officially a cancer patient, under treatment for, what I am told, will be the rest of my life. And I am subject to all the measurements and follow-up surveillances that go with such a diagnosis.
Shortly before the cancer reoccurred I had retired from 51 years of medical practice. For many years my medical career had been intertwined with an active life as a volunteer community organizer, working in independent politics, youth programs, community health, human development and learning activities that I would continue into retirement. The promise of entire days off also offered me the possibility of trying some things in my life. I took art classes, joined writing groups and completed a short play or two. Most of these forays into the arts were through workshops and classes offered by the cancer community - The Creative Center in NYC, Write Cancer workshops at Beth Israel Hospital and others. I was drawn to these as they were all accessible and did not presume any expertise. I currently attend two weekly writing workshops and am an irregular participant in art classes.
I don’t think it is too much to say that these experiences in the creative arts have transformed my life. I am not sure why. I have not been discovered, nor, except in my most grandiose moments, think I ever will be a published author. The cancer experience is rarely the subject of my writing or, conversation. In this sense it is not the cathartic experience that one reads about. Yet on most days I leave our weekly workshops absolutely exhilarated and derive a great deal of joy from the writing experience.
One of the impetuses to explore the relationship between my writing experience and cancer comes out of a deep and abiding interest throughout my medical career of defining and exploring a practice of health and healing that extended much beyond the medical model that continues to dominate our approach to medicine today. The model says, you have a problem, you find the cause, i.e., the diagnosis, and you fix it up. Although art therapy, music, happiness, laughter, joy, relaxation techniques are recognized as important adjuncts to the healing process, offered in many cancer centers, including my own, arts therapy and other alternative therapies are related to as being in the service of cancer care.
In a large National Cancer Institute survey on the effect of creative arts therapies on cancer patients it was reported that participation in a creative arts program significantly reduced cancer related depression, helped people adjust to changes in body image, cope with the stress of treatment as well as grief and fear.
I am not in disagreement with these assessments. To me, they do not take these findings far enough. Some of my experiences and others in the writing group including our leader who herself is a published author and person with cancer, is that participation in the creative arts, broadly speaking, gives one a way back into one’s life.
The Cancer narrative is an extremely powerful and compelling one, can take over one’s life. You are a victim, you are a soldier in the war against cancer, you participate in the conquest of cancer, you survive cancer and your first priority should be “cure.” Organized by this rhetoric, Cancer can become our life as opposed to one of the things that are happening in our lives. I am a writer, a playwright, a community organizer, and a person with cancer.
Additionally Cancer is BIG. It takes up a lot of space in my life, sometimes a great deal and at times, not much. The demands of treatment, management of side effects, protocols, the testing, the waiting for results, can eat up our energy. The writing activity gives one a time out, another really important thing to do in my life. It can change my life. I have found that taking part in this creative activity helps me to be more creative in all aspects my life, including how I do my cancer. For example I am not, like many people I know, a willingly medication taker. When I am in pain I have been open to exploring other more creative things to do than taking pain meds. I call a friend, breath deeply, go to the gym for some slow stretches. Pain, nausea, fatigue, depression, sleep problems are not infrequent components of the cancer experience and, like the writing experience, I can go on a journey to get to know them, embrace them and change them.
There are many other positive things to say about my experience with the creative arts and cancer. One that has meant a great deal to me is the community building aspect of these projects. In the writing workshops we come together every week, to write and read our work. After the workshop, we pair up to travel up-town or down-town on similar routes, and sometimes a shy invitation to a movie or a meeting is part of our interaction. We relate not as a community of cancer survivors, in fact we rarely speak about caner. We are a community of writers, story tellers, artists, creating a new performance of Cancer.
One of the others writing about illness and the arts who share in this understanding is Dr. John Graham Pole who founded the Arts in Medicine program at Shand Hospital in Florida. Graham Pole says, “we make a clear distinction between art that patients, and clients passively enjoy and art that participants create themselves. …Participation is more effective in the healing process of illness both physical and psychological because the more involved patients are in the creative expression, the more able they are to take charge of their situation.”
I want to end with a quote from my favorite medicine in life expert, Patch Adams. “Creativity is great medicine for all, both the creator and the one who experiences it. It is not an indulgence; it is fundamental to medical practice.”
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