What Time Can Do To Diagnosis Stories

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I’ve written about the Family Centered Experience (FCE) in my blog several times over the past two years. It’s a wonderful program for all first- and second-year medical students at the University of Michigan, and rather than describe it for you in my own words — and in case you don’t click on the link to the previous entry about the Family Centered Experience — here is a quick what-it-is from the FCE Web site:

Through FCE, first- and second-year students engage in understanding the personal side of medicine through firsthand encounters with patients and their families. Families who volunteer to participate in FCE open their lives and give our students invaluable training that cannot be duplicated in any classroom or clinic. In the role of mentor, volunteer families teach students how to see the patient as a whole person and how illness affects all aspects of their daily lives, beyond just the diagnosis of their disease. Our doctors-in-training apply what they learn from these mentors to their clinical training and beyond.

Kathryn (my wife) and I are now in our third year as volunteers in the program. We continue to volunteer because we really enjoy the interaction with the different students. It’s great to hear them talk about how the program changes their perspectives on disease, and we really like having a hand in helping shape the perceptions of future doctors.

This past Tuesday night we had our first meeting with the two students assigned to us, who’ll be with us in the program for the next two years. Although we met Olga and Zishaan about a month ago at a kickoff event for this year’s program, that initial meeting was just a quick introduction in a room of hundreds of people. Tuesday was the first time it was only the four of us. They arrived at our house at 7 that evening, and for about 90 minutes we sat at our dining room table and talked about my condition. Ninety minutes! During which the topic of conversation was all about my disease. My Type 1 diabetes.

And here’s what I want to say about this year’s meeting: It was an entirely different experience for me than the past two years’ first meetings with medical students. Now, I don’t mean it was in any way a lesser experience than in previous years, and certainly my feelings about the evening had nothing to do with having these particular new students asking us about living with my condition. No.

So what was it that made this… well, what made this meeting more challenging, for both Kathryn and me? I know the answer: It was the talking about what it was like when I was diagnosed, about those first few months of living with Type 1 diabetes.

Yes, it was so clear to me for so long (if two years qualifies as “long”) because it was such an incredibly huge thing to have happen in our lives, those weeks of dry mouth, of peeing all the time, of complete exhaustion and unquenchable thirst, way back in late winter and spring of 2007. But it has, it seems, started to find its place near those dusty top shelves of memory.

We didn’t rehearse my diagnosis story prior to the medical students’ arrival Tuesday, and so when they wanted to know about how I first found out, and when I began to recite what I thought was a well-worn narrative — and when Kathryn began to recite hers, as well — we discovered there were gaps in our stories. We found breaks and disputes about chronology. We misremembered what we thought we knew all too well. Our tandem act seemed somewhat on its way out.

And, at least for me, I found that the immediacy of the initial emotional reactions didn’t come back to the surface as they had the previous times we’ve told the diagnosis story. In all, it was a more factual telling. It was still my story, but it wasn’t what it once was.

What a difference a year makes. What a difference two years make.

I keep thinking about one of my favorite poems, “The Vanishings,” by one of my favorite poets, Stephen Dunn. When I was an undergraduate I memorized the poem out of sheer love for it and thought about it often.

No doubt the memory of a disease diagnosis story isn’t what the poem is about. That’s of no matter. Who would have thought the poem would come back to me, fifteen years later, while contemplating my life with Type 1 diabetes.

It’s these lines, especially, that I keep hearing:

One day one thing and then a dear other
will blur and though they won’t be lost
they won’t mean as much…

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