The invitation read "Marry the Beast," and more than 100 people were in attendance. The marriage was actually a commitment ceremony. Paul Binder renewed the vows he had made to his Type 2 diabetes when diagnosed 18 years ago.
Paul Binder is founder of New York's Big Apple Circus. Yet don't let that make you think this ceremony was an act. Binder says, "Making my vows again to my diabetes I had a real and deep sense of commitment and renewal. Saying them out loud in front of a group of people, some of whom are my oldest friends, made me feel tremendously supported."
The ceremony was part of an event staged by The Betes, an organization expanding narrative medicine to include healing through theatre and play.
Marina Tsaplina, The Betes' founder, is the 20th in my series on diabetes change agents. At 28 she is helping us see and transform our chronic illness "stories" to heal.
Tsaplina is a performing artist, puppeteer and executive and artistic director of The Betes. She told me the idea of a wedding first came to her last July.
"We were in the middle of developing The Betes programs," Tsaplina explained. "Our focus on emotional health in the face of chronic illness made me confront my own pain and lifelong journey with diabetes. Wanting to embrace my struggle I thought what if I marry my diabetes?"
"My dear friend Barbara Ann Michaels is a wedding officiant so she performed the ceremony. To my complete surprise during the ceremony I found myself saying, 'I love you,' to the character I'd developed for my diabetes. Immediately, I understood the value of this ceremony. Also, that it perfectly fit The Betes' work, helping people visualize, verbalize and externalize their chronic illness stories."
The Betes has a big mission: To remind us that health care is a human story and that empathy and seeing the whole patient, not just their disease, needs to be at the heart of the patient-provider interaction.
Most importantly Tsaplina says is, "To help people transform their relationship with their illness. As we un-demonize our illness and treat it more tenderly, we see the many layers of meaning it holds for us. Then we are able to embrace our illness and become more whole."
Tsaplina long thought of her own Type 1 diabetes, which she got at the age of 2, as her "beast." "But then I realized that all that I was going through, my struggle with depression and low self-esteem, not just my diabetes, were my beast," Marina said.
"No one has to see their illness as a beast, but there is probably something that is attached to it that needs to be heard and healed. That said, our work doesn't 'cure' or 'treat' the physical disease. It helps make the burden lighter and the person feel more free."
The Betes' artistic director and producer is Deborah Kaufmann. Kaufmann is a founding member of Big Apple Circus Clown Care, the world's first professional hospital clowning program and the recipient of the Raoul Wollenberg Humanitarian Award for her work with Clown Care. Kaufmann has entertained thousands of ill children in hospitals and trained all of the "Clown Doctors" who participate in the program.
Play, humor, joy, being open and bringing our stories out into the light, these are things we seldom talk about in chronic illness and never see. Yet, as in narrative medicine's therapeutic story-telling, these are centuries old means through which to connect to, and transform, our stories of hardship to heal.
That night as we watched Paul on stage with his officiate, sipping our wine, gladdened to be among friends who share diabetes and many esteemed health professionals, we witnessed a new ritual -- a public commitment to one's own health care.
Rituals allow us to soften grief, heighten confidence and mark an event as significant and meaningful. As did Paul's face reading his vows and taking his old partner, diabetes, into his heart anew to tend to and to love as long as they both shall live.
Should you like to arrange your own commitment ceremony, "Marry the Beast" or a service for healthcare teams to reaffirm commitment to their practice, "Marry the Care" contact The Betes.
Riva's latest book, Diabetes Dos & How-Tos, is available in print and Kindle, along with her other books, 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It and The ABCs Of Loving Yourself With Diabetes. Riva speaks to patients and health care providers about flourishing with diabetes. Visit her websites DiabetesStories.com and DiabetesbyDesign.com.
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