The Dark Post about Disease and Choices and Shit. Subtitled: Maybe It Would Be Better NOT to Read or Post This After All, Except I Said I Would Post Every Day, and You’ve Been Drawn in by the Clever Title

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. [1] 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. [2] 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 . . .]

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10 Responses to The Dark Post about Disease and Choices and Shit. Subtitled: Maybe It Would Be Better NOT to Read or Post This After All, Except I Said I Would Post Every Day, and You’ve Been Drawn in by the Clever Title

  1. Kim says:

    I absofuckinglutely love this post, and you for pouring this out. I often wonder about the things we seem to trade off – except, do we really know if it’s a trade-off, yet? The unknown is a scary place.

    I hope you find peace in whatever you decide is best. I’m still flailing around in the water, trying to find “best” myself.

  2. Scully says:

    two words:
    ME TOO!
    and even more words:
    we, as the collective DOC know that diabetes is far from cupcakes and unicorns (just where in the hell did those symbols representing us come from anyway?) and I, for one, appreciate a good dark post. I’m all about saying it how it is and most of the time it just ISN’T fun.
    I’ve struggled A LOT with my A1C the more I work out and it eats me up inside.
    I dreamt of potatoes last night. Probably because I love potatoes but I mostly have to avoid them because they cause BG havoc. Because yes I CAN do this but only with things that are BG friendly.

  3. Céline says:

    I don’t think any less of you in the morning. But I do respect you a hell of a lot more. You write well and are very eloquent. Not to mention willing to share the hard stuff. It resonated with me because, during this summer’s marathon training, my A1C climbed higher than it had been in years…in direct contrast to the fact that I was at my most active and fit. It’s frustrating. As with anything D-related, it always comes down to choices. And balance.

  4. Chris says:

    For what it’s worth, I still respect you. This post is incredibly thoughtful and I shall sing high upon my Hootsuite and inform the Twitters that this is Required Reading. I’m sure many of “us” don’t consider this part of the balancing act of diabetes but it’s certainly tough. Thanks posting this, I know writing stuff like this is never easy.

  5. mary says:

    this is how i feel about “playing it safe” in terms of life choices, regardless of any disease one might have: sure, life is choices, but life is also highly unpredictable. no matter how perfect your A1c might be, that drunk driver coming at you head-on doesn’t give a shit. in other words, you might not live to be 90 years old, so why not do the things that make you happy (within reason, obviously – don’t go and be that drunk driver)? i know that there are many counter-arguments to this way of thinking, such as the fact that you have loved ones (lisa) who depend on you – but it’s not like the choices you’d be making (training for triathlons) are super risky. you’re torn between living one type of healthy life and a different type of healthy life – live the healthy life which makes you happy now, as you never know if that healthy life might be cut short.

  6. Maria Q says:

    I wish that there was a guarantee somewhere. Do this and you’ll get that. I always try to focus on deliverable outcomes, but really there isn’t. There isn’t a guarantee that says if your HbA1c is under 7, you’ll never encounter a diabetes related (or unrelated) complication. I think it comes back to standard of living. Do we want to run around living afraid of the number on a meter or a rapid HbA1c test machine? I applaud you for talking about the fear of not knowing if you’re doing the right thing. I read somewhere (Team Type 1, I believe) that the funny thing about our condition is that two fairly similar people can do the exact same thing for the exact same period of times and have to battle our diabetes dragons (readings, doses, food) differently. With no seemingly obvious rhyme or reason. I don’t know what to tell you other than to have faith in your decisions. Cause really there isn’t a right or a wrong. Just many, many shades of gray.

  7. Heather says:

    Thank you for sharing this. I know you’re not alone. I also know there are people out there (including Team WILD) who really focus on endurance athleticism with diabetes and might be able to help you not have to choose between them.
    I’ve mostly given up french fries because of their effect on my BG, but they’re also not great for me in other ways. I refuse to believe you really have to stop doing something you love that has other health benefits because of diabetes. Maybe I just don’t want you to have to choose because I don’t want diabetes to have that power. I really do believe that triathlon should *help* with diabetes not hurt it. I hope you find a way to make that work for you.

  8. Patrick McConnell says:

    Hi Jeff,

    Great Post,

    I feel your pain… Got me thinking about all the things I have to compromise on a daily basis, both the ones that are good for me and not so good… Thanks,

    PS, You were at Simonpalooza???? how did I miss you???? (I Kid… I Kid…)

    PPS, I`ll say it again… that was a Great A1c… Congrats,

    Thanks again for the Post…

  9. shannon says:

    i hope you didn’t regret it this morning. even though you called this post dark, i hope you felt lighter after sharing it. as you can see, you’re not alone in these struggles and sharing can ease the burden somewhat.

  10. Melissa says:

    Wow! I think you’ve nailed something we all feel at times. I know I have found myself in this same place recently – just by having this disease we are faced with diminished health. We don’t know how the choices we make – that we have to make every single day – will effect us 20 years from now. Thanks for sharing this. It really hits home.

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