Irresponsibility? Or Spontaneity?

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I just received a response to my post about dropping my insulin pump off a waterfall that made me reevaluate my own judgment of myself. A reader named April, whom I met at a conference at UCSF just several weeks after her 13-year-old son was diagnosed with Type 1 diabetes, wrote:

[My son] started pumping with a Minimed Revel in June. This summer on vacation he jumped into a lake-with the pump on. Oops. It still worked fine. I pretended to scold him and tell him to be more careful. As I walked away, tears of joy streamed down my face, I was happy that just for those few minutes he had gotten caught up in the moment and joy of anticipation for the leap into the water. For the first time in months diabetes wasn’t on the forefront of his mind. I am again heartened to know that after years of dealing with your diabetes that you can still get caught in the moment.

As I read her comment, I felt myself getting a bit teary. I actually had never considered the idea that losing my pump in the waterfall was anything but irresponsible. Why had I not taken the time to climb back out of the water, carefully remove my pump, and tuck it someplace safe? I felt guilty, and a bit ashamed. How could I have been so dumb?

But reading her comment opened me to a new interpretation. Maybe the reason for my mistake was much more innocent: that at that particular moment, I wasn’t thinking about my diabetes. I was thinking, “My husband’s playing in a waterfall, it looks really fun, and I want to join him.” Life, not diabetes, was at the forefront of my mind.

There is so much responsibility that comes with diabetes. So much thinking and calculating. So many preparations in case something goes wrong. When I leave my house — even to just run to the corner store — I have to ask myself: Do I know what my blood sugar is? Do I have my glucometer? Do I have access to sugar in case it goes low? Do I need to take a correction bolus if it’s too high? If so, how much? My glucose level is the first thing I think of when I get up, and among my last thoughts as I go to bed. Though it’s often invisible from the outside, people with diabetes are always aware, at some level, of the awesome responsibility of managing their blood sugar.

As such, it cuts directly against my desire to live fully, to lose myself in the moment, and to not let diabetes get in the way of my enjoyment of life. What April’s comment made me realize is that, you know what? Despite all the challenges diabetes presents, most of the time, I’m successful. Just on this trip, I’ve done everything from a homestay with Mongolian nomads to taking a swim with elephants (pump safely tucked into a shoe). And I’ve done this while simultaneously managing my diabetes — maybe not as well as if I’d been at home, but managing it nonetheless. Perhaps instead of beating myself up for the rare time when an accident happens, I should use it as evidence that I’m doing something right. Yes, we have to accept diabetes as a part of our lives. But that doesn’t mean that we should stop living.

There's no way I'd miss out on this.

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Amy Stockwell MercerBridget McNulty Recent comment authors
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Amy Stockwell Mercer

I agree 100% and I think ironically, we have to make an effort to be spontaneous sometimes….spontaneity has been trained out of us. Some days I feel like diabetes management is only at the back of my mind when I am fully engaged in a stimulating activity. Only later, when I’m home again, do I start thinking about my blood sugars. And it feels good to have ‘forgotten’ for an hour or two. Well written Catherine!

Bridget McNulty
Bridget McNulty

Absolutely! I couldn’t agree more. I’m beginning to think that the goal with diabetes is to manage it to the extent that it lets you get on with the rest of your life and forget about it as much as possible. And if that means a less than perfect HBA1c, but still in the range of control, that’s just fine.
In a choice between perfect diabetes and a fun-filled life, I choose life. And as long as you’re in fine control (which you are, because you feel well most of the time), that’s all that counts.
Bravo!

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