This post is dark. You’ve been warned.
Ever since LADA Awareness Week a couple weeks ago, I’ve been thinking a lot about having been diagnosed with type-1 diabetes as an adult. In particular, I’ve been considering how strange it is to go from being healthy—well, healthy enough—and then very sick—and then seemingly well again. When I was in the hospital, doctors and nurses asked me about my health, and I would say, “I’m well . . . except the diabetes, I guess.”
I lived more than twenty-four years without diabetes. That was long enough to do so many things, things I could certainly have done with or without diabetes. Before my diagnosis the idea of whether I could (or should) do those things had nothing to do with any kind of illness. Then, in a very short time, that easily-dismissed question was a constant part of the fabric of life.
When I think about diabetes, I don’t usually think about what-ifs or before/afters. It’s just the way things are; I can’t change it. But I do think about what it means to have my concept of myself changed in such an abrupt way. (As if, perhaps, I had awoken one day as a bug-like character in a Kafka novella.)
Lately I’ve also been thinking about the ways that I integrate (and resist integrating) the fact of diabetes into my concept of myself. First off, I’m not a dualist; there’s just matter. Mind is matter. Soul is matter.  And yet, diabetes still feels so foreign to me . . . so separate from me.
The defining characteristic of diabetes is usually put in terms of high blood glucose. In my mind, though, the defining characteristic should be “disease;” the high blood glucose is just the manifestation of the body’s failure to maintain homeostasis. Disease is the inability of my cells and systems to work properly, requiring on-going intervention to keep me alive and active. Of course, it’s hard work to mimic an endocrine system, but it’s been harder to accept that my body has failed me.
It has just recently occurred to me that these thoughts are probably related to my constant struggles with myself over my A1c, that little blood test which reflects three or four months of blood sugar fluctuations and purports to put into one number the quality of my diabetes management.  The number itself is just a number; it doesn’t judge me, though it suggests that I’m putting myself at increased risk for complications. My endocrinologist doesn’t judge me because of it, although I know she wants to help me lower it.
Even though I know I shouldn’t, I judge myself.
Ever since I went off NPH and onto the pump, my A1c has crawled steadily upwards. It’s gone up even more since I started exercising again. It defies the conventional wisdom, and it has had me wondering. Not about whether I’m trying hard enough—I know that I’m doing my best—but whether I’m making the right choices.
Life is choices. That’s been a fundamental principle of my life for two decades, far longer than I’ve had diabetes. You have to choose, and while you should think win-win, often you can’t have it all. Fine. I accept that. But the choices aren’t always easy to make or be happy with after the fact. Saying “no” can be difficult. Saying “no” to something you really want is agony.
I’m having trouble lately always believing that the range of choices is really as great as I tell people without diabetes, as we people with diabetes tell each other. “You can do this.” Of course! I can certainly make it through whatever diabetes throws my way.
Lately I’ve started to hear this mantra another way, though: “You can do this . . . but it has a cost. Is it worth the cost?” How do I know? How can I know?
On the way home from Simonpalooza in NYC, I had the talk with Lisa. What if I can’t have it all? What if I have to choose between two very important things? Triathlon has made me a better person, but in the training for it, I’ve let myself run high. I didn’t like it, and I didn’t mean to; it’s just what happened. Despite spending a lot of time paying attention to what my blood sugar did while I was exercising, I still don’t feel like I can predict what’s going to happen too well. So I start out higher than I would otherwise try to be. I’m not happy with it, and I know enough about control systems to suspect that those high readings are probably messing me up for the next twenty-four hours.
Where do I draw the boundaries between trying to stay alive as long as I can thanks to really good blood glucose control (by doing what my body should be doing) and living a full life—the life I would otherwise live—with a slightly higher A1c? It’s not either/or, of course; it’s a continuum.
So how do I find that balance? And what if? What if having a good A1c means not doing triathlon?
Time will tell. It’s probably a false choice. The only way I will know is to keep trying to do both until (and probably long past) it’s clear that I can’t.
And besides, my last A1c was down from 8.3% to 7.9%. I hope to keep bringing it down. I’m going to cowboy up and get back to working hard to figure things out, because that’s all I know how to do. But goddamit! it had better start getting easier—or I need to find a different way of thinking about things—because it’s kind of killing me to think that I could be shortening my life by doing the things I love.
See . . . wicked dark. Perhaps WordPress shouldn’t let me post anything when my blood sugar is over 400. I will probably regret this in the morning. Will you still respect me?
1 — To paraphrase Leibniz by way of Arcade Fire: My body is a cage that keeps me from dancing with the one I love, but my mind holds the key. [Go back . . .]
2 — During a #dsma twitter chat I once quipped that “A1c” is hell’s postal code. [Go back . . .]