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What It’s Like to Watch People Die From Your Disease

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My immune system attacked my body when I was 10, resulting in a loss of ability to make a crucial hormone called insulin, which turns the food you eat into fuel for your body. Without insulin, the sugar from your food compounds in your blood stream, quickly poisoning you from within.

Before 1921, this event was a death sentence. The only “treatment” was harsh diets that sometimes led to starvation. Even over the last few decades, being diagnosed with this autoimmune disease meant shorter lifespans and drastic changes in what life could look like. Outcomes weren’t great. Complications were inevitable.

Technological advancements have made it so that I, by being born at the right time and into privileged circumstances, can not only live, but can live the life healthy me would’ve lived too.

But the reality is, people still die from complications of type 1 diabetes all the time. And whenever I hear stories of it, I break down.

When people die from this disease, it’s rarely from their own negligence. It’s mostly from simple things – not realizing that what felt like the flu was actually diabetic ketoacidosis. Not waking up from a low blood sugar and dying in your sleep. Not realizing how much medicine or food you would need when you’re out and about. Or, also common, from not having the money or resources to afford what you need to survive.

I, like the rest of the world, am obsessed with “Hamilton.” There’s a lyric repeated throughout the show, “…if there’s a reason I’m still alive when so many have died…”

I’m aware that a large part of my legacy on this planet is attached to my having grown up sick. I’m one of those people who believes that there’s a reason for and a lesson in everything. I truly believe I wouldn’t be the person I am without my disease, and the only way I can turn that into something meaningful is by paying all these lessons forward as much as possible.

But that doesn’t make it any easier when I watch people die from the exact disease I have.

I put up pictures of my blood sugar graphs from my continuous glucose monitor all the time, to the point I think my friends and family have come to see them as a normal and inconsequential thing. But I wonder sometimes if they realize how easy it would be for me to die if the line on that graph swings too low or too high. I wonder if people understand that the medicine that is slowly dripping into my body 24 hours a day from this little machine I keep on my hip can kill me. I’m constantly doing the calculations in my head; if I give myself too little, I die. If I give myself too much, I die faster.

Ninety-five percent of the time, I don’t think about it. It would be too much if I did.

But in months like February, when seven people died in one week – two of them from my old home in Georgia – from type 1 diabetes, part of me breaks and I cannot figure out how to put it back together. I look at pictures of these kids’ faces and I feel so guilty. There is no reason I’m still here and they aren’t. We lived and live with the same thing. But they died and I’m still here and my heart breaks for them, because there have been plenty of times in my life when I should’ve died too, but I keep getting chances when they didn’t.

In a way, it steels my heart. It’s broken inside, but the iron around it makes me want to fight harder to help. It’s why I keep writing – yes, for me, for my mental health. But also for all of us who are still here. Who are still fighting too. Because for some reason or another, we get to still be here.

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Thinkstock Image By: sanchairat

Originally published: March 10, 2017
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