Changing the World

Changing the World

by Mary Fairweather Dexter

In scene 18 of The Sweet Lowdown, Howie Mouse says, "I'm all for progress, as long as nothing changes." When I began writing the show, I naively wished it would change the world. I was unprepared for how fiercely people would fight to maintain the myths and stereotypes. Sometimes I felt Howie wasn't the only one getting sucker-punched.

The 100 Campaign calls for insulin for all: all Type 1s that is. Other campaigns call for awareness, a new name, so the innocent aren't lumped into that other category. You know the one. Those diabetics. The ones who ignored the warning signs. The ones who asked for it. In the documentaries, news stories, media blitzes, they are faceless. A huge slouching belly slinking toward self-made hell.

During the year and a half I spent doing the research behind The Sweet Lowdown, I met a lot of people, heard a lot of stories, but I never met anyone who awoke one morning and said, "What I really want in life is to have diabetes." Fame, fortune, a white convertible, maybe. Not a malfunctioning endocrine system.

Frederick Banting intended insulin to be available to all who need it. His most famous patients were the children of the wealthy and powerful, Elizabeth Hughes and Leonard Thompson, but we don't hear about Banting's friend Dr. Joe Gilchrist, who developed diabetes while Banting was doing his experiments, or of all the men at Christie Street Hospital for Returning Soldiers. Were these unnamed men T1 or T2? No one knows. Banting didn't care. They needed insulin. He made sure they got it.

Yet, almost 100 years later, many of us still fight for our insulin prescription, fight to prove that we deserve this life-saving fluid. Cute little kids in far-off lands, everyone agrees they should be saved. But not-so-cute adults in not-so-well-off parts of this country? It makes some feel better to believe those people got what they deserved. It was that Coke they drank, that donut they ate, not beta cells and mitochondria.

How can we fight so hard and find ourselves slipping back through the centuries? Can anyone change the world?

During one performance, I walked out onstage to find myself flanked. CDE's and endocrinologists from one local HMO seated on one side of the stage. CDE's and endocrinologists from their rival HMO seated on the opposite side. After the show closed, a few months later, I nervously visited my endocrinologist, wondering what the price would be for my daring.

For the first time, I wasn't asked what I was doing wrong. I wasn't asked what I'd eaten that I shouldn't have dared to eat. I wasn't told if I just ate less, exercised more and figured out the perfect timing and insulin and behavior.... Instead, for the first time, we talked about what my pancreas is doing now as opposed to what it did ten years ago and how complicated and contrary this disease can be.

Change comes slowly, often imperceptibly. Someone's eyes are opened. Slowly one person, then another begins to move a few degrees off course. And another follows.

Hi Mary. Thanks for this blog, which is both beautiful and important. Yes, as you said so well, "Change comes slowly, often imperceptibly".