One day not so long ago, Jessica Bernstein was returning DVDs to Reel Video in Berkeley. Disabled placard in full view, she pulled into the spot reserved for disabled drivers, then struggled to exit her car. Having been diagnosed with Type 1 diabetes as an infant, at age 39 she now endures many related conditions such as debilitating foot cramps.
“The cramps were so bad right then,” Bernstein remembered. “I walked a few steps and noticed a man standing there, leaning against the wall, between me and the returns slot. He could see me. He could see how much pain I was in.” Holding out the DVDs, she asked the stranger if he’d mind dropping them into the slot. It would have entailed almost no effort on his part, but the sneer he gave Bernstein was half-mocking, half-aghast. “He looked me up and down and said, ‘You’ve made it this far. You can do the rest.’ It was like, how dare I ask him for help?”
Some people shun her. Others, including close friends, pointedly avoid asking how she’s feeling. Sometimes she’s accused of malingering. The sick are treated strangely in a culture that is “terrified of suffering and illness and mortality,” said Bernstein, a Berkeley psychologist who is the project director of Blood and Honey, a documentary still in production that explores the philosophical, spiritual, and emotional dimensions of chronic illness. In the film, noted feminist Susan Wendell describes her horror at watching Oprah Winfrey say one day on national TV: “If you don’t have your health, you have nothing” — blithely defining every viewer with cancer, AIDS, or ten thousand other afflictions as worthless, miserable, invisible.
Also in the film, Burkina Faso-born medicine man Malidoma Patrice Somé explains that in his tribe, the Dagara, a diagnosis of illness is viewed as a kind of initiation, the start of a new phase in life. Bernstein admires Somé’s belief that the chronically ill, despite their ages, are our modern-day elders.
“These are people who have to deal with pain and suffering on a minute-to-minute basis,” Bernstein said. “They have to develop coping skills. These are people who have valuable knowledge that is important to everyone in our culture, because pain and suffering are things that every single person on Earth has to deal with, sooner or later.”
At Calvary Presbyterian Church of Berkeley (1940 Virginia St., Berkeley) on Wednesday, April 21, Bernstein will discuss “the myth of control,” in which people with diabetes are often “wracked with shame and guilt because they’re made to feel that it’s their fault” when their blood-sugar levels go awry. “One of the things that’s never talked about, that’s the elephant in the living room, is that even if you do everything ‘right,’ everything the doctors tell you to do, you still might develop complications.” Shame and self-blame, she said, are additional weapons in the assault that society wages against the sick. 7 p.m., free. CalPresBerkeley.org