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What do an African medicine man, a diabetes researcher, a feminist philosopher, and a Native American psychologist have in common? They are all part of a new documentary, now in production, dealing with the psychological component of living with diabetes.
I was in the middle of my dissertation on diabetes when the idea for this documentary hit me. As someone with type 1, I wanted to understand how living with the condition for so many years influences people's identity development. This question became the topic of my dissertation and led me in surprising directions.
As I delved into the research in this area, I realized that diabetes researchers focus primarily on the negative aspects of living with diabetes. Few researchers talk about how people can develop in positive ways as a result of dealing with this kind of adversity. I knew from personal experience that it isn't true that diabetes has only a negative effect. So I turned to literature that discussed the other side of living with illness. Some was written by people who actually had chronic illness, and some was written by people who had explored the issue of suffering.
I discovered two writers who really changed the way I thought about diabetes. They came from completely different backgrounds, but they were actually saying the same thing.
The first person was well-known African medicine man Malidoma Patrice Some’, whose book, The Healing Wisdom of Africa, was assigned to me in graduate school. In Malidoma's tribe, a crisis, such as a diagnosis of diabetes, is viewed as an initiation to a new phase of growth. Instead of being seen as a horrible disaster, a diagnosis is perceived as an opportunity to develop greater wisdom.
It Takes a Village
Malidoma feels that in order to successfully make it through a crisis, we have to draw on community and elders. He asserts that people can be elders at any age as long as they have developed a certain level of maturity and wisdom. He views people who have lived with a chronic illness like diabetes for many years as elders.
The other writer who influenced me was philosopher Susan Wendell, who has lived with chronic fatigue syndrome for the past 20 years. Dr. Wendell believes that when people with chronic illness spend many years developing wisdom about how to deal with pain and suffering, they become a valuable resource for people both with and without chronic illness. She explains, “We don’t talk as much about the experience of illness as we talk about how to get over it, how to stop it, how to prevent it, how to relieve it, how you can be healthy if you really try. We don’t look inside the suffering, past the wall of suffering, to see what’s behind it. I think there’s an enormous body of knowledge out there, among people who are suffering, that is untapped, and if we could tap into it more, we’d be less afraid, and we’d know more how to cope when it happens to us.”
These ideas were amazing to me because they are so different from how we usually view illness. Coming to see myself as someone with wisdom to share was a revelation. Our culture focuses so much on the negative side of illness and suffering. Usually when I tell someone that I've lived with diabetes for 36 years they respond by saying "I'm so sorry" or "You poor thing." Nobody has ever thought to pick my brain and find out what I've learned about the issues that are not only at the heart of diabetes but are also common to us all—uncertainty, loss, change, and mortality.
With these ideas in mind, I began the process of making a documentary about diabetes. I wanted to share the perspectives about illness of people with type 1 and type 2, as well as those of various psychologists, philosophers, and chronic illness scholars.
The film takes viewers through the journeys of three people who have lived with diabetes for 20 or more years. We refer to these individuals as "diabetes elders"—people of different ages who have acquired a wealth of knowledge and experience that can be passed onto others. We hear what it was like in the beginning when they were first diagnosed and then how they progressed through the years. The people with diabetes share not only what they’ve learned about living with the condition, but also what they’ve learned about life.
The project has gotten off to an exciting start with our first seven interviews, which include Malidoma Patrice Some' and Susan Wendell. We recently completed our second shoot, and the whole production team was riveted by the interviews.
You Can Help Complete the Film
This project depends upon tax deductible donations. In order to continue filming, we must raise more funds. If you are willing to help get this film completed, there are many ways you can contribute. You can make a tax deductible donation through www.bloodandhoney.org.
You can also help by organizing a fundraiser or by connecting us to people interested in donating. We are also planning a music fundraising event, and we welcome introductions to musicians who might be willing to participate.
This is a non-profit endeavor. If the film generates more revenue than it costs to produce, I will donate the majority of the funds to starting diabetes support groups through the San Francisco branch of the Juvenile Diabetes Research Foundation.
Find out more about Blood & Honey
Jessica Bernstein, PsyD, is a psychologist who has a private practice in Berkeley, California, with a focus on people with diabetes. She can be contacted at firstname.lastname@example.org.