So I’m traveling through the Midwest on a music tour (for a full description of the band’s typical traveling accommodations, see previous blog entries — the short story is we don’t have a fancy tour bus and seldom have nice hotel rooms, but we’ve got a van that’s a step up from a used church van and we make a meager but sufficient living while on the road). Right now, we’re in Wisconsin, just north of Madison. As I write this, it’s Wednesday, and that means I have to have a blog entry posted by tomorrow morning.
To be honest, diabetes has been distant from my mind these last few weeks. We’ve been traveling from Toronto to Seattle, now back across to Chicago, then down to Alabama, Georgia, and North Carolina, before finally heading back home to Philadelphia, Pennsylvania. Along the way, conversation has been what you might expect from four guys cooped up in a van together: 90% ridiculous, and 10% tired and a little irritable. And it also means every blood sugar check, every shot, is performed in the presence of the rest of the band. So my diabetes is not a purely private thing on the road.
As you might have guessed from the preceding paragraph, “Dino-betes” was a term that came out of one of those many conversations on the road. I don’t really recall the entire backstory, but the bits of conversation leading up to that newly adopted title for my condition included those old Wilford Brimley commercials selling testing supplies (“If you’ve got ‘diabeetus,’ test often” — good advice, of course, but funny delivery of the line), and some debate found online about the “appropriateness” of teaching children about dinosaurs (a concerned mother worried that hearing about dinosaur fossils was scaring her children, I think). The natural result of that strain was diabetic dinosaurs and a NEW series of commercials with Wilford Brimley advising anyone with “dino-betes” to test their blood sugar.
So this communal sharing of my diabetes has led to some good stuff, some very funny moments. But the flip side happens, too. The guys in the band are supremely supportive and always understanding toward me. But there are days when I’M stuck in the throes of misbehaving numbers and I really don’t want to share it. You all know those days — all you want to do is just get done with whatever you have to do, go home, turn on the TV, and feel angry at this damn disease. I had one of those days on this tour, and I can say with some certainty that after sitting in conspicuous silence while riding in the van and going to sleep early, the conversation turned to, “Is Scott OK?”
The moral of both these stories is that diabetes (or dino-betes) doesn’t happen in a vacuum. None of our lives happen in a vacuum, and so we are constantly faced with the question of how much we want to share, and how much we want to keep private. With diabetes, it’s usually fairly easy to keep it private, but not always. And the more I live with this disease, the more I have moved toward the side of sharing it. I don’t mean OVER-sharing it to the point where I define myself by it. But sharing it as a part of who I am, a part of my experience, and a part of my daily life.
I’m pretty comfortable sharing the funny side of it, but I still struggle with sharing the downsides. Looking back, I think I would have felt much better that night if I had simply shared, “my blood sugar is being crummy and it’s irritating me so I’m turning in.” The rest of the guys probably would have felt less of a burden, too. Of course, that’s just my take on it. We all get to decide how much we share with those around us. But I think you’ll find the more open you are, the less power this disease will have over you. You’ll find humor, and when you’re down, you’ll find support. I’ve got the humor part, and I’m working on accepting the support part.
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