“You have that … thing on your arm. Don’t you worry about what people will think?”
The thing on my arm is for my insulin pump; it’s how the insulin gets into my body. Yeah, sometimes I worry about what people will think. I worry more about keeping my blood sugars in range as often as possible, so I try not to worry about what people think when they see my diabetes devices. Sometimes I don’t mind at all and I like when they ask, because I have a chance to tell them about a disease they might not know much about. Other times I feel more like being quiet. It’s complicated.
“Oh, so the CGM and the pump take care of everything for you, right? Diabetes isn’t a big deal anymore, right?”
The technology definitely helps. The continuous glucose monitor (CGM) that I wear is amazing and it sends this streaming flow of blood sugar results to my phone. I can see my blood sugar anytime I’d like, with the press of a button. My pump gives me a streaming flow of basal insulin all day long, and I can take my meal doses without having to inject myself again. But even in the systems where the technology is looped together and they can communicate directly, either via DIY systems or FDA approved ones, a lot of factors remain in play. Is the insulin good? Is the insulin pump infusion site working right? Is the CGM transmitter sending accurate results? Can I give the algorithm the data it needs to perform accurately? And even when it performs accurately, do I have trust issues with technology after I couldn’t even count on my own body to work the right way? Oh, and let’s not forget how much people with diabetes depend on insurance coverage to access this technology and these treatments. Tech can help, but you have to be able to afford it. It’s complicated.
You can’t eat those Swedish Fish; you have diabetes!
I don’t normally eat a lot of sugar – you’re right. Eating candy and stuff like that makes my blood sugar skyrocket, and I have trouble bolusing for foods like that. So I mostly avoid them. And I’ll go out of my way to triple-confirm that the coffee or the soda I’m about to take a sip of doesn’t have sugar in it. But if my blood sugar is really, really low, I’ll drink a whole bottle of orange juice in one gulp. That’s when I need sugar the most. Without fast acting sugar in that moment, I could honestly pass out … or die. Food is medicine. Or a reward. Or a punishment. Such a weird and frightening dance, this confusing relationship with food. It’s complicated.
I thought people with diabetes couldn’t have kids?
It’s always been less can’t and more shouldn’t, at least back in the days of Steel Magnolias. But technology and treatment for diabetes has progressed so much since I was diagnosed that having kids became an option I could safely pursue, so long as I was willing to do the work and my body was willing to cooperate in terms of fertility. And then add that willingness to a whole lot of luck, as with any pregnancy. The work of planning for pregnancy when you have diabetes, and then getting pregnant, and then doing the 40 weeks of pregnancy takes a tremendous amount of dedication. And it’s scary. So many emotions, so much fear, so much potential for joy. It’s complicated.
Aren’t you afraid they’ll get diabetes because of you?
Oh man, this question. Of course I’m afraid of that. I’m afraid of everything. I’m their mother – I think it comes with the territory. Diabetes is the devil I know. But I can’t let fear unravel my joy. My children make love feel effortless. Their lives are worth every worry and every frustration, every hardship and every tough question. I feel like my life is worth living, and even if diabetes or something else touches their life I want them to feel like their life is worth living too. I try to prepare myself for all kinds of scenarios while knowing that I have no idea how to handle the majority of those issues, as a parent. We do our best. It’s complicated.
Is diabetes hard?
Yes. And no. There are times when I get mired in some of the tougher moments of diabetes, blowing up balloons by the dozen for a ridiculous pity party I’ll mentally throw for myself. Sometimes I hone in on the ways that my body can rot and suffer as a result of this disease. That even the most fastidious care can’t protect me in full from the ravages of diabetes. That the stuff we do, as people with diabetes, is so oddly invisible and yet occupies an unreasonable amount of brain space, permeating multiple tiers, like a layer cake of responsibility. That I’m scared of this disease at times and have nights where I’m afraid to fall asleep because I’m honestly unsure if morning will come.
And then I have to pump the brakes on that thought process, because so far, morning keeps coming. Concerns about diabetes overwhelm me at times, but I have the emotional support to currently manage the spin cycle of worry. I look at my family, at my children, at the work I have the honor of doing and the gifts this life has provided me and I’m reminded, a thousand times over, that diabetes might be complicated but life is worth it. And the difficulty of diabetes has given me a lens, a permanent lens, through which I see the world. It gives a perspective to my life that ups my appreciation for everything my body still does, everything my mind still accomplishes, everything my heart still feels. It makes me grateful. I try to make the best of it.
(… but if there was a cure for diabetes, I’d fight you to get to the front of the line. I’ll go off the top rope, throw chairs, and employ whatever other World Wrestling Federation moves I can think of. I love you, but I can’t pretend to value the gifts of perspective over the bonus of making insulin. Like I said, it’s complicated.)
Metrics powered by PLOS ALM
Copyright (c) 2018 Kerri Sparling
This work is licensed under a Creative Commons Attribution 4.0 International License.