On August 23rd, 1966, Susan and I got married. And indeed, on August 4th, 1967, Susan’s mother passed away from her metastasized breast cancer. Shortly before our 1st Anniversary. And it was later that same year that my mother, Frieda Simon, was diagnosed with breast cancer and five years after that on September 8th, 1973 that she passed away from a metastasis to her brain.
It was the Spring of 2000 when Susan was diagnosed with breast cancer. From the Spring of 2000 to the Summer of 2001 Susan’s diagnosis changed radically as the doctors tripped over themselves in expecting good news and finding increasingly bad news. Then came the moment when everyone went dark and it became clear that the medical establishment expected Susan to follow her mother.
What was my response? How did I spend that time and what did I do? That is the story told in the play I wrote in 2012 and continue to perform. The play, The Actual Dance is a theatrical presentation of my journey in the year 2000 with Susan as she went through her bout of advanced breast cancer. It has now been presented about 170 times in front of nearly 2700 people, and it has become what “I do.”
Let me say that it took me many, many years – about 12 – to understand the deep impact that the breast cancer experience with Susan had on me. In retrospect, I wrestled with the experience in the deepest possible way. It forced me to confront the most fundamental existential questions of life. What does life really mean? What is love? “How do I do this? How do I dance the last, the actual dance with Susan?” (quote from the play) Something I couldn’t imagine doing and how I discover that “I can do this.”
My own life journey has taken many turns. I started my career in 1970 working with Ralph Nader as a lawyer. I was then in the army. I created a public affairs firm in Washington, DC and ran it for 25 years always thinking I was involved in activities that helped consumers and the public interest. Even appearing periodically on shows like Face the Nation, Phil Donahue and Oprah Winfrey and enjoying a profile in the New York Times as early as 1971. Yet today as important or as impactful as any of that was, none of it feels as meaningful as this journey of taking this piece of performance art to audiences who once they experience the show seem themselves to be transformed.
My mission in life now is to take The Actual Dance to all those who need to see it; and to bring it in a way with the art, music and energy that will help others see and experience their own journey with breast cancer, or any cancer or life-threatening disease, differently.
Breast Cancer Awareness Month calls me to “up my game” in this work and to join the effort to increase public awareness of this disease and to offer insights and links to perspectives that focus on what I now call “the other person in the room.” That is people like me “the love partner” and that can be a spouse a child even just a friend.
So, each day, as I have the past four years, I will blog about Breast Cancer Awareness. I will attempt to offer a “stat” or some not well-known fact about Breast Cancer or Cancer itself. Suggest a task in honor of Awareness month, and then point to some resources or other organizations in the field. Indeed, this year I hope to focus a bit more on what others are doing.
Stats of the Day: According to breastcancer.org in 2018 266,120 new cases of invasive breast cancer are expected to be diagnosed in women in the US, along with 63,960 new cases of non-invasive (in situ) breast cancer. About 2,550 new cases of invasive in men in 2018.
Task of the Day: Start the month off by performing your own breast exam and scheduling, if you have not done it all ready, a mammogram. Here is a great little tutorial on You Tube that is suitable for all ages.
Resource of the Day: Here is a great resource for materials about Breast Cancer Awareness Month. You can add something to your Facebook profile, a badge for your website, even draft letters asking members of your organization to take action! https://healthfinder.gov/nho/octobertoolkit.aspx
The Actual Dance: Performances. Donate
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