On June 10, 2019, I was diagnosed with type 1 diabetes. I was 39 years old, and my entire world was upended. Overnight my life became a 24/7 regime of needles, insulin, carb counting, and more math and science than I ever wanted to deal with. Two months later, I was informed that the state of Minnesota was taking away my health insurance, confirming my worst fear: that being an insulin-dependent diabetic in the United States of America was the equivalent of a death sentence.
Thankfully a Facebook friend of mine, Representative Jeff Brand, immediately connected me with the Minnesota Department of Health and Human Services, saving my health insurance and my life. I will be forever indebted to him for his help. But this was only the first in a series of hurdles to overcome that will never go away. Challenges with my insurance company, delays in getting my supplies, sleepless nights, friends who mean well but have no idea what it means to live with this disease and how to support me, and most recently, my endocrinologist's office shuttering months before I was able to establish with a new doctor because the system is so overloaded. I often feel as if I am left to fend for myself when there is no time or energy to do so. It is an exhausting way to live.
On June 10, 2023, I began saving all of the detritus of my medical life that would normally go in the trash: empty insulin vials and test strip containers, CGM transmitters and applicators, tubing, syringes, infusion set applicators, my old pump and lancing device. Diseases like these create an enormous amount of waste, a necessary fact but something that creates a huge amount of guilt for someone like me who does everything she can not to contribute to the climate crisis. I decided to amass these supplies and incorporate them into the creation of new artwork, using my voice to bring awareness to the disease and keeping these items out of the landfill (many of these are not recyclable). I am continuing to save my supplies through June 10th of this year, my sixth "diaversary."
Thanks to a generous grant from the Minnesota State Arts Board, I am spending this year creating this body of work, culminating in a multimedia gallery exhibition and public event. In addition to the 2-D and 3-D pieces, I will be creating infographics to be displayed on the walls of the gallery, each one giving insight into the numbers associated with these two years of amassing supplies: the numbers of each item used, the retail price of these medical supplies, the number of diabetics who passed away during the two-year collection phase, etc. The exhibition will include painting, mixed media, sculpture, and screen printing, and I am researching electrical elements to include in the work.
I sometimes wonder if I talk too much about my disease, force it down other people's throats whether they want to know about it or not. But at the same time, I must manage this disease 24 hours a day, with no breaks, no vacations, and no help from anyone else. I've also learned that keeping quiet prevents others from understanding what it truly means to fight this battle, especially now that the federal funding that contributes to Medicaid, Medicare, state health care programs, and Minnesota's own emergency insulin program is at risk of disappearing at any moment. Art is political, disability is political, and being a woman is political. My story is political, and it is important. This project is the story of me.