I recently traveled with a friend for the weekend. In the hotel room, I pulled out my emergency injection—what a diabetic person needs if they have passed out from a low blood sugar—and showed her where I would keep it, along with my standard instructions, “Just hand it to the paramedics.”
She insisted that I show her the directions and walk her through how to use it, which I did; thankfully, the kit comes complete with very clear instructional diagrams. At the end of the my explanation, which unfortunately included some discussion of needles, seizures, and vomiting, as any fun cautionary medical tale does, she looked even more nervous than at the start, so I repeated my original instructions, “Just hand it to the paramedics.”
I then quickly knocked on the nearest wooden object and added, “You should know, in almost twenty years, I’ve never needed it.” She looked a little relieved. “And I hope I never do need it,” (still true!). “It’s just the sort of thing I always need to prepare for, though. In case.”
Sometime later, almost unrelated to the new subject at hand, she brought it up again. “I guess I’m pretty lucky that everything in my body, you know, works properly.”
To some of you, this may sound like an obvious statement; we should all be grateful when our bodies work as they’re intended. But for those people whose bodies have always worked as intended, it’s generally not something they’ve thought about much. And why should they—or you, if you’re fortunate enough to be one of those people?
Personally, there are various parts and systems in my body that do not work properly. But I’m extremely fortunate to be able to say that my body works well enough. Well enough that after 19 years with Type 1 Diabetes (T1D), no one would look at me and think, “Sick.” I show no visible signs of illness—unless you recognize the Medic Alert bracelet I wear; the insulin pump, a small mechanical device that feeds me my insulin through a tube; or the continuous glucose monitor (CGM), another device connected to my body that frequently reads my blood sugars. So maybe there are visible signs; but those are accessories of wellness, not illness.
My body works well enough to live the active, independent life that I have designed for myself, but it has taken an awful lot of work to get here. And it will take a lot of work to stay
here. I call those tools accessories of wellness, because it is through advances in technology as well as daily vigilance over the state of my own mind and body that I have maintained this wellness. To live well with diabetes means to always be conscious of what is happening with your body, and to be prepared for any challenge—having backup insulin, batteries, snacks, etc. Carry an emergency injection. To know how many carbohydrates are in everything you eat, or at least make an educated guess. To know how to explain your situation in the local language wherever you may be traveling. And much more.
Over the years, I’ve explained diabetes to all of you through these letters. As a person with Type I, my body does not produce any insulin, the hormone that allows the sugar from food to be utilized as energy. Diabetics are therefore completely dependent upon outside sources of insulin: injections and/or pumps like mine. Over time, this can have harrowing consequences on a person’s body; diabetes can cause amputations, blindness, kidney failure, fertility problems, heart conditions, and any number of medical maladies. To avoid these tragic results requires both the vigilance I have already discussed, and access to ever-improving medical technology. This, of course, is where you come in.
Because it’s fundraising time.
Once again I’m asking for support with JDRF’s annual Walk to Cure Diabetes. Money donated to JDRF funds the research that leads to life-improving technologies like insulin pumps and CGMs, as well as simply better insulins. It provides support to newly diagnosed families, allowing them to feel secure enough to take charge of their lives, instead of allowing the illness to lead. It will hopefully someday fund a cure, which currently does not exist. And it allows researchers to study why Type I diabetes and other autoimmune diseases are so viciously on the rise—and maybe someday prevent people from developing the disease at all.
This year’s Walk will be held on Sunday, October 27th, at the Philadelphia Museum of Art.
Any questions about the Walk, or about diabetes, please do not hesitate to ask!
I have a pretty great life, and never want these letters to sound like complaints. But I am incredibly envious of those people who never truly have to think about their bodies’ concerns beyond the occasional flu or pulled muscle. Imagine if you suddenly no longer had to read a price tag, or check your bank account, because you knew it would all be fine. That’s how I suppose it would feel to not have to think about carbs, or blood sugar. It’s a level of freedom that I actually can’t imagine for myself—I’m unable to see it—but I’m optimistic that other people can, and are working on it. And with your continued help, we’ll get there.