What If...?

In a social media diabetes group I belong to for folks with Type 1 diabetes, someone asked a question a few weeks ago that generated dozens of responses: what would you do first if a cure was discovered tomorrow? I had to sit with that awhile, and not because I had to choose from a carefully thought-out list of possible options. It took me a long time - a couple of hours at least - to come up with a response. I realized the reason for that was that I hadn't allowed myself to even come within a few hundred mental miles of hope (for a cure) for a very long time.

When I was first diagnosed in 1983, the hospital staff told my family and I that a cure was "just around the corner," maybe 5 years away. It buoyed my anxious parents and although it felt like a lifetime to me, I could at least think that far ahead. I'd be 12 or 13, wrapping up middle school. I imagined my future teenage self being declared cured. At diabetes summer camp a couple of years later, I learned that many kids who'd been diagnosed within the last few years had been told the same thing. See? We'd say to each other, certain there was strength in our numbers. It had to be true if so many of us and our families had heard the same thing - and from doctors, no less - the "ultimate" authority on our diabetes (long before patient-centered care and lived experience became a part of chronic illness care).

I don't remember when it occurred to me that the magical trophy a cure represented kept moving farther and farther away. I may have asked my dad one day if there was any news about that cure we'd once been promised was so close, and that it probably pained him to tell me no.

But I still believed, because our health care providers kept telling us it was getting closer, the research was really promising. Up until I graduated from college and was living on my own. I met another person living with type 1, and as is common for many of us, we shared our diagnosis stories. Half-jokingly I said, "and here we are with the cure 'just around the corner.'" He snorted and looked disgusted. "Yeah," he said, "I've been hearing that for twenty years now."

I felt so naive. How had five years become ten, then fifteen, then nearly twenty? Then I got angry. We'd essentially been given false hope, delivered in a way that I'm sure was intended to soften the blow of being diagnosed with a serious illness, but regardless, fell far short of the honesty I had come to depend on and expect in my diabetes care. I did my own research. Sure enough, there were interesting avenues being explored, but being so close to a cure? We weren't and had not been. There and then, one a chilly fall night in my early twenties in Boston, my hope for a cure guttered out. Hope felt too expensive - much like the insulin I often struggled to pay for, working minimum-wage. I couldn't live without insulin, but I could get by without hope for a cure.

In the years since, I have heard countless folks with Type 1 relate how they were told the same thing at diagnosis, and how hard it was to learn it was essentially, well, a lie. Diabetes itself is daunting enough. The truth, however hard - that's always what I will prefer.

So. Hard truths aside, I came back to the question posted in our social media group. What's the first thing I'd do if a cure were discovered? My fellow group members posted responses that ranged from the hysterical to the poignant. I suppose my answer leaned to the poignant side of things that day; there was something nostalgic and surreal about the concept of extricating myself from this condition that permeates every piece of my world - I said I'd start the long process of unlearning how to always be watching - my blood sugars, for lows, for highs, for signs of complications, for the other shoe to drop. I'd start there, and I'd do it over the biggest plate of chicken pad thai I could order. You know, the one that equals about a week's worth of carbs.