Imagining Elizabeth Hughes

Last week, Alexis Pollack at I Run on Insulin posted an excerpt from an article about Elizabeth Evans Hughes, the first Type 1 diabetic ever treated with insulin. Her story is presented by James S. Hirsch, who details Hughes’ life of secrecy, guilt and struggles with Type 1. It’s a fascinating read (Go read it right now!), and it’s stuck with me for the last several days.

What struck me the most was how normal Hughes’ life seemed once she starting taking insulin. She put an unimaginable amount of time and energy into keeping her condition a secret from almost everyone in her life, and from reading her life story, it seems to have worked.

First of all, she lived to be 73 years old. Seventy-three! That’s 23 years longer than the average life span for a white woman born in 1907 — and Hughes lived that long with the kind of diabetes technology we roll our eyes at today. Second, she gave birth to and raised three healthy children — and lived to see the births of seven grandchildren.

I think about all of us with our bionic doohickeys, our 6-10 daily blood sugar checks, our 6.0% A1c goals, our carb counter books and data uploads and teams of CDEs, dietitians and endocrinologists, and I think, “Maybe we could stand to give ourselves a little bit of a break.”

Poor Elizabeth Hughes spent three years on the only diabetes treatment that existed then: the starvation diet. When she finally began to benefit from experimental insulin injections, they were delivered through big, fat needles. And the insulin? It was extracted from the pancreatic glands of fetal calves, full of contaminants and muddy in color (the insulin, not the fetal calves). She never lived to see mass produced insulin pumps or easy-to-use glucose monitors. But she lived as full a life as could be expected — even by non-diabetic standards.

So what would Elizabeth say if she were alive and kicking today? Would she be fascinated by the futuristic delivery systems and monitoring techniques we 21st-century diabetics enjoy? Or would she be dismayed that, almost 90 years later, the basic prescription for such a prevalent and potentially devastating disease has barely changed? Would she be as secretive now as she was then, hiding her condition from her children and friends? Or would she be online with the rest of us, cracking jokes about being “high” in public and trying to figure out how to wear her pump with a sundress?

Elizabeth Hughes was alone with a disease that few people survived, and while it must have been terrifying and isolating, I’d like to think that part of her success as a diabetic might have been due to a lack of predetermined limitations. After all, these were the days before Steel Magnolias and Wilford Brimley. No one was around to tell Hughes stories about some long-lost aunt with diabetes — the bad kind — who lost a foot and then died before she turned 40. It was too early for The Diabetes Police or disgusting sugar-free “diabetic” chocolates.

I don’t envy Elizabeth Hughes, but I definitely admire her. She didn’t have a script for life with Type 1 diabetes, so she wrote her own.