I’m Not Here For a Cure

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Many of my fifth-grade students remind me of myself at eleven, wielding curiosity as an excellent distraction from classwork. It took them about two weeks into the school year before they noticed the “grey thing” on my arm (my continuous glucose monitor). Explaining how I’m a cyborg unleashed even more questions, and eventually I was telling them how, as a fifth-grader, I faked sick to stay home from school and tumbled into my diabetes diagnosis.

Almost immediately after my diagnosis, every interaction with others changed. Biases about what I can and can’t do—what I should and should not do—were underlined by the needles. I would go out to eat with my family, and we would ask for the nutrition facts; then there would be a glance from the server when I dug into a cheeseburger. The food I ate became a source of contempt and judgement once people knew What I Was. I would eat a cookie (something I was only allowed to do after developing diabetes), and I would get glances from the kids sitting at my lunch table. Sometimes they would hiss at me, “You’re not supposed to eat that!” with all-knowing expressions on their faces.

It wasn’t all bad, of course. Because blood sugar fluctuates with hormone levels and illness, I had an internal alarm system when I was due to start my period and when I was getting sick. Imagine being a thirteen-year-old girl at the whims of an irregular and bloody hell-scape of a period, and it’s not difficult to see the utility of an internal alarm system. I also quickly realized my teachers would bend over backwards if I said I needed the nurse. This led to some, ahem, creative insulin dosing to have low blood sugar at the exact time I was supposed to be in algebra class. (Kids, if you’re reading this, don’t do that. It’s dangerous.) But for the most part, my blood sugar was Peter Pan’s shadow—mischievous, ultimately harmless, sometimes damn useful.

But not everyone saw it this way. My mom tirelessly researched promising studies for some hint that a cure was forthcoming. For years, her commentary about this study or that new drug (or sometimes very old drug) was a murmur in the background, like voices overheard through a glass wall. It wasn’t until I was sixteen or seventeen that I found myself fully hearing her comments. I eventually asked her to stop telling me about her research, because it was exhausting keeping up with her cycle of hope and disappointment.

I am a headstrong woman, as is my mother. Because of this, our relationship has been volatile for years, peaking during college when I more resembled an adult cat than an actual adult. Mom and I have been in some terrible fights in which my medical costs were thrown in my face like a soured dish rag. Once, my mother spent ten minutes yelling at me over the phone while I sat in a CVS, wishing the pharmacist knew that feigning ignorance only works if you don’t stare. She was yelling loudly enough that I was certain Pharmacist McStare-y could hear every ugly word. I realized I never wanted to be in that moment again, on the receiving end of screaming about money and medicine. I never wanted my life to be dependent on another person’s ability to transfer money for my prescriptions into my bank account.

In a way, diabetes is more about money management than blood sugar management. I lost my health insurance at 19. Though I eventually ended up on a patient assistance program, there were several months that I skipped a meal here and there to make my insulin last longer. Yet it wasn’t until three years later that I realized how ridiculously high the cost of my life had become. I was sitting at the round kitchen table in my mother-in-law’s house with my engagement and wedding rings stacked on the wood. The silver jewelry sat an inch from a vial of Humalog. At the time, my insulin cost around $290—a meal’s worth more than both rings. I snapped a picture of the scene and texted it to my friends with an angry caption about how fucked up this scenario was. My friends sympathized in a superficial way, and the conversation quickly moved past my anger. I was left wondering how anyone could write off the monetizing of my life.

People like me experience extortion in pharmacies. In doctors’ offices, we defend our decisions. That defense is more excruciating than a research defense, and we do it four times a year. But in a pharmacy, we’re defending our right to live. To rely on insulin is to stand at a pharmacy counter and wait, dread pooling in your gut, as the register whirrs. Pharmacies are places of cruelty, because honestly, what can we do? There is no generic for insulin. It’s not like birth control or Viagra where we can choose to not take it and still live. If I stop my regimen, I have a day, maybe three, before I am dead. Not dead in the “oh my mom’s going to kill me” sense but dead in the “all my worldly belongings go to my sister, cancel my Spotify account” sense. When the register finally spits out that number, and it’s $290, and I have $293 in my account, what can I really do?

Nothing about my healthcare coverage has been what I expected. I am 27 now, and I have spent more of my diabetic life as an adult than as a child. Of that adulthood, only three months have been spent under “typical” adult healthcare conditions: working full time with health insurance provided by my employer. In the past, I have been without insurance at times, like when my father lost his job. I have panicked while waiting for my Lilly Cares (a patient assistance program through Eli Lilly) application decision. I have received free samples, offers to find black market insulin, insulin originating in Canada, and subsidized prescriptions. I have a GoFundMe page to pay for my health insurance. I have learned that what we consider normal for healthcare is a lie. The notion that getting a college degree, finding a good job, and receiving very decent, fully paid-for company health insurance that protects individuals is a lie. Even with these, the cost of medicine is still a death knell.

While my people are making themselves sick to afford their insulin, while we are dying, there are still those who would ignore the source of this crisis. They would have you believe that we are a problem to be fixed. That we need your help to cure us of this horrible affliction. This stems from the idea that bodies should be perfect—but mine isn’t. And I don’t care to be perfect. I can think of no greater act of self-violence than taking my body, with all its lumps, malfunctions, and little comorbidities, and berating it for its failure to be more normal. I can think of nothing more pathetic than making small this grand life I have built for myself.

The only reason you want to fix me is because you’re not willing to fix a system that makes me the problem.

Still, the idea that I must be cured of my body persists. The American Dream for a Cure has shaped the only narrative diabetics are allowed. The Juvenile Diabetes Research Foundation hosts walks to cure diabetes, where able-bodied saviors flock to deliver our bodies from themselves. There are miracle treatments meant to reverse the effects of diabetes. (If they mention Type 1, run, fast; that shit’s dangerous.) There are tone-deaf comments online about “fighting” or “beating” diabetes. It is true that diabetes can be a brutal disease that leaves people without limbs or eyesight and plunges them into chronic pain. But complications are most frequently the result of less than ideal blood sugar management, which in America, stems from the human rights violation that is our healthcare system. The uglier parts of the disease lie at the end of an arrow beginning with poor access to health care and insulin price gouging.

My diabetes is a novelty to my younger students, a source of the best type of stories—real ones. It’s different with my older students. I have watched high schoolers sit with the knowledge in silence before asking, “Do you hate it?” Or (and this was my favorite response), “MS. CLAIR DO YOU LIKE BEING DIABETIC?” Many other people would say, Yes, I hate it. Of course I don’t like it. And I do wish that certain aspects were different (low blood sugar is a bit of a mood-killer, if I’m being honest). But I do not wish I were different, for I was never the problem.

The only reason you want to fix me is because you’re not willing to fix a system that makes me the problem. It is unsurprising, then, that when I say I don’t want to be cured, I am shouted down. How could I possibly like the life I lead, with all its blood and needles? Cure logic says my body works differently than yours, and so it must be pitiful and defective. Our healthcare system reinforces this logic by allowing pharmaceutical companies to extort thousands of dollars each month from individuals for insulin alone. But I never wanted your pity, your judgement, and I certainly never agreed to rent out my life for $290 a vial. Nor did I ever want to be cured of my life. I refuse to participate in the spectacle of curing the world of diabetes, because my body was never the problem.

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About Author

Clair Irwin has lived with diabetes for 16 years. She is using her experiences to serve the state of Illinois as the IL #insulin4all chapter leader, and will be soon be a doctoral candidate, researching how to improve libraries for people with disabilities. Clair lives in Champaign, IL with her husband and two cats.

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