I often try to condense my CV into a sentence: “After graduating high school I joined a prog rock band (I play guitar) that recorded a record for Columbia Records, which didn’t get released, so I decided I’d go to college, eventually getting a Ph.D. in Medieval Literature from Harvard which is why I’m the web manager for a major public aquarium.” Leaves a few things out, but that’s the essence. Not just a checkered career but a plaid one. Or maybe argyle.
It was while I was in that “decided I’d go to college” phase that I became, as the MD who dx’d me put it, “the proud owner of juvenile diabetes.” That was in 1983, and yeah, they still said “juvenile diabetes” back then. One of my professors who later became my dissertation adviser, a Brit with the dry wit of that tribe, said “It must be even more annoying to get the juvenile kind.”
I was in my twenties and married when I got it. I had no idea what it was, even to convince myself it was anything. I’d had a really nasty cold in October that year, and a week or so after I finally got over it I started feeling just… weird. Uncomfortable in my skin, kinda sick to my stomach. It didn’t seem like a specific sickness, it was all so vague, but it kept getting worse. Like a bad hangover that didn’t go away, even though I hadn’t been drinking. Plus eye sight problems, trouble focusing. Well, final exams and seminar papers were coming up, that’s gotta be it, I thought, just student angst. It didn’t occur to me that it might be related to this other strange thing, which was that I seemed to have to pee all the time. WTF? And so thirsty! By mid-December my wife had noticed I wasn’t doing well and mentioned it all to her mom, who happened to be an occupational therapist and had enough medical education to say “Get that boy to the doctor, it sounds like diabetes.” Which sure enough it was. Don’t know what my actual number was, but the doc told my wife “probably tomorrow or the next day you wouldn’t have been able to wake him up in the morning.” Yeesh. Didn’t go to the hospital; they just showed me how to do the injections and had me come back every day for the next week or so to check levels and adjust doses. (My mom had called our family physician who said “Put him in the hospital!” but when I told the university doc that, he said “Do you want to go or just have us help you get stabilized?” and that was an easy decision).
I think I dealt with it all fairly well, emotionally, but there were two things that really brought it home to me that Life As I Knew It Would Never Be The Same:
My first hypo. I somehow had convinced myself that the warnings about insulin were like the ones you get on any other drug box label. “May cause drowsiness!” Oh sure, they always say that stuff, no big deal. Probably my third or fourth day as they ramped up my dose came the moment that forever disabused me of that notion. I remember getting up from a nap and feeling this… well you all know what it feels like. Oh. My. God. No BG meters back then, just those chemstrip things, but I don’t even think I tested, I just hoped I’d stay conscious long enough to get to the fridge for that OJ.
Perhaps even more traumatic for a student and rock musician in his twenties, and of much longer-term consequence was discovering that the list of Things You Can’t Have Anymore included… gulp!… BEER. No, no, no, tell me it’s not true! Ah but when I brought my deep concerns about this life-shattering issue to my Dr’s attention, he revealed a tiny ray of light in the darkness that stretched endlessly out ahead of me: “Scotch is ok. No carbs there. Just have a scotch. Not too much, mind.” If I can’t have beer–BEER!!!–I told myself with grim earnestness, determined that I could overcome even this great an obstacle to a full and rewarding life, I am going to cultivate a taste for high end single-malt scotch. What choice did I have? I have never regretted that decision (well, not too often) and I hope it can stand as an inspiration to others.
Having been dx’d back in the semi-dark ages, I’ve been through three major changes in my treatment regimen: R/NPH (a.k.a. “Eat Now or DIE,” 20 years–far far FAR too long), basal-bolus MDI (10 years), and pump (about 2 1/2 years as of this writing). Of those, by far the most life altering was the middle one. I think it’s pretty standard to start people off on that now, and many who started out on it and later switched to a pump experienced that as the great liberation in their lives, but for me MDI was almost miraculous. I’d been stuck on Eat Now Or Die for so long that the first day I was actually able to eat on my own schedule is still one of the most vivid memories in my experience of having T1. “It’s 12:30, and I haven’t eaten yet, and I’m not passing out. It’s 12:45, and I haven’t eaten yet, and I’m still not passing out. It’s 1:00, it’s 1:30!!! And I’m still not passing out!!! It’s 2:00 and… ok, I better eat something. But I’m still not passing out!” Compared with that, the change to a pump was nice, lots of things are incrementally easier, but nothing like the feeling of someone saying “Oh by the way, you have wings now, you can fly if you want” that MDI was for me. Maybe because I’d known about it for a long time but couldn’t get my (hidebound, university-clinic) doctors to put me on it. “Your numbers are fine, let’s not change anything.” That’s still a big problem for a lot of us, if somewhat less so than before, but a topic for another thread.