Today we welcome to the ‘Mine longtime D-peep Jhenn Kinnear in the Toronto area of Canada, who was diagnosed in grade school more than three decades ago and now works as an accounting manager at an engineering firm.
Her fascinating D-story involves her entire clan, as she’s among multiple generations in her family living with diabetes (!) We also can’t be help but be impressed with the dramatic fictional short story about insulin access she penned recently. Please read on to learn more about Jhenn and her diabetes family history.
I’m the 4th generation of type 1 in my family, which means at pot luck dinners you often get the carb count along with the type of dish. Yes, I have had diabetes for 34 years. But it would be accurate to say I was conscious of this disease long before I was diagnosed myself with type 1. Not in any great medical detail, just a general awareness that any young child has of their grandfather – but in my case it was grandad being given ‘his needle’ by my gran in the morning, or needing to eat his meals at set times, and no cookies… OK, maybe a digestive, all peripherals of being a diabetic in the late 1970s. I have other memories of him too, but these definitely stuck with me.
This awareness of ‘diabetes’ was converted into personal reality with my own diagnosis at the age of 11. As anyone who has had to fill out a ‘family medical history’ knows, type 1 diabetes is one of the boxes to check, and I can check that box going back three generations before me. “Inherited susceptibility”? Ah… yep. Because of this, my diabetes story starts before I came along. Over the years I’ve listened to the pieces enough that they have become more than just a story. So I’ll share this particular thread of my family history, with a little bit of ‘family lore’ thrown in to spice it up!
My great grandfather William on my mother’s side, a wool merchant in London, was born in 1856 and was diagnosed late in life with diabetes, according to my grandfather (a medical doctor). At that time, 1930s England, I have to assume it was very likely the cause of (or at least a contributor to) his death.
Both of his sons (my grandfather John, and my great uncle Geoffrey) were diagnosed with type 1 diabetes as young adults, although back then it was still ‘diabetes mellitus.’ My great uncle, born in 1916 and diagnosed around 1936, died at 31 from Tuberculosis. Like in my great grandfather’s case, I assume that having diabetes at that time would only have exacerbated any other medical issues. I’m curious whether the discovery of insulin in Toronto was in time to have made a difference in Geoffrey’s health, in the UK.
My grandfather, born in 1914, completed his medical education, obtained a specialist qualification in internal medicine and spent 4 years as a specialist in military hospitals in Britain, Europe and India. When he was diagnosed with diabetes he was in his 30s and already married (as luck would have it, to a nurse). One of his children was also diagnosed with type 1 at age 31. So that’s three generations in a row, if you’re keeping track, and I consider the deck to be officially stacked.
Back to John: he was a physician and a researcher, and his diagnosis did not prevent him from becoming a celebrated psychiatrist. He was the director of research laboratories at Toronto Psychiatric Hospital, among other things. At some point he met endocrinologist Dr. Hans Selye, known as the “father of stress research,” and Selye’s theory about stressors playing a role in disease heavily influenced my grandfather’s theory regarding his own diagnosis. Warning: here’s where the “lore” part comes in – as this next bit is all based on stories told over a cup of tea.
When my grandfather was researching psychosomatic medicine during a fellowship at New York Hospital, Cornell University, apparently he and some other young doctors would perform ‘unregulated’ medical experiments on themselves. I always imagine this like the movie Flatliners — all white coats and dramatically dark hallways — but in reality it was probably just nerdy doctors hooking themselves up to ECG machines and taking LSD. His theory, though, was that the ‘extreme’ stress placed on his body from those experiments, whatever they were, triggered the onset of his diabetes.
My grandad died before my own diagnosis and that of one his children – I wonder what his take would have been, would he have tried to identify what stressor triggered it? Would it have been something we bonded over?
My Mum was diagnosed with type 2 diabetes in her late 50s, and is on insulin. I’ve wondered at times if the medical bias of ‘older = T2’ is at play here, if maybe she’s a misdiagnosed T1 because come on – look at the history! Grandparent, parent, sibling and child? But it’s not my battle to fight, and what would I even be fighting for? A label? As long as she’s healthy, I’m happy.
Looking forward, as that fourth generation T1D poster child, I am face-to-face with that stacked deck. The next generation of our family is growing. I have a son, and my brother and my cousins are having their own children, and we are all keenly aware of the family medical history. Now 7 years old, my sweet, patient kid is used to his Mum making him pee on a stick every time he has a growth spurt and is overly hungry or thirsty or tired, just to make sure there are no ‘key tomes’ in there. Perhaps the deck will stay as it is, no more cards dealt, no more diagnoses. Fingers crossed.
So there you are, that’s my family T1D story. Way more than I ever fill in on a medical form; it’s a story I find unique and intriguing, and I don’t mind sharing it. Diabetes is only one thread in my family quilt, but it’s a connective one, linking generations together with a double helix stitch!
I like to think I have a mostly positive attitude about this disease (because what’s the other option?). Despite the stress, I think it’s made me a good planner, excellent at risk assessment, knowledgeable about nutrition, and I had pretty good skin as a teenager… All that doesn’t diminish the mental exhaustion that accompanies the constant diligence but occasionally there’s a little bright spot in the T1D landscape here and there. In the early 2000s I was using a certain brand of test strips, and was one of the winners of an online contest. The prize was a trip to Las Vegas to see BB King (who was at the time, the spokesperson for that brand of test strips). I got to sit next to him at lunch at the House of Blues, commiserate about ‘finger pricks,’ listen to him tell stories about his start in music, and later that night see him in concert. So yeah, that was a perk!
A ‘Diabetes Doomsday’ Short Story
As mentioned, we’re intrigued by Jhenn’s short story “The Cost of Living”that addresses the ever-outrageous issue of insulin pricing and access here in the U.S. — in which the phrase “we care about our customers” takes a hollow and bitter tone. Here’s what she tells us about that:
“That story was written for a contest that was about real-life, imminent doomsday scenarios, specifically how ‘The Rich/Corporate Greed’ could be responsible. It’s meant to be exciting and since the audience/judges were not likely T1s it’s a wee bit expository. I’m not really sure where I’m going to share it publicly at this point, as I don’t have a website or blog or anything — and I doubt it’s going to win the contest, although maybe I can make it into a screenplay spec and get it to Ron Howard. LOL.”
Thanks, Jhenn, for sharing your family history and a sneak peek of your short story. With your permission, we’re happy to make that available to our readers via Google Docs:read “The Cost of Living” story here.