For 41 years, my way of “curing” Type 1 diabetes was to pretend I didn’t have it. This is not the blog post where I tell the story of how I went into a coma, after my grandfather died, my parents got divorced, and my mom kidnapped my brother and me, hid us from my dad. and I woke up as a diabetic.
That will be a later post. (It’s a doozy!)
This is the story of how I told everyone I wasn’t going to be a slave to it. Where I pretended I didn’t have it. At first, it worked out pretty well, as denial strategies go. I played on the soccer team, got into tennis and hit balls for two or three hours a day, ran, and walked everywhere. I didn’t even think about what I ate and the urine sugar test kits stayed at home most days.
Who wants to be seen in the bathroom at Junior High dropping a dropper full of my own pee into a test tube? Not someone who is out to prove how not a diabetic he is!
I made it through my teens, twenties and most of my thirties acting like I just didn’t have it. Of course, when I slipped into the toilet stall to give myself a shot, or my blood sugar got dangerously low or high, I felt it. But I’ve always been a good liar so no one else knew. Damn it, I was “normal”!
I ate as I pleased, experimented with recreational drug use, smoked cigarettes and drank myself silly. I got jobs in restaurants, where I could sleep in, party late, then sleep it off again. If anyone expressed concern about my cavalier lifestyle, I’d say, “I feel fine!”
If someone dared say, “I thought diabetics wren’t supposed to (eat sugar, drink, fill in the advice-averse self-destructive activity), I’d give them the what for and ask them what they knew about the islets of Langerhans and where they got their Endocrinology degree.
I lied to my doctors. I even had myself convinced. My endurance at poker tables and late night gin and tonics were all the proof I needed that I had it under control. Ripping open a bag of Nacho Cheese Doritos and munching it down to the bottom, where the red powder caked my hands and I licked the sweet carbs from my fingers gave me power over something I could never truly conquest: the already always presence of a disease that could never be cured, only managed.
What only a few knew were the harrowing consequences of this disease and my exacerbatory behavior. I developed proliferative retinopathy in my eyes. As my retinas began to be filled with blood, entire swaths of vision became blocked by dark, syrupy shadows. Only the saving grace of eye palsy, unrelated to the retinopathy, that caused my left eye to become stuck in the left corner of my socket, caused me to visit an Ophthalmologist.
After her exam, she said, “The palsy will go away on its own. There’s something else of more concern. Four painful treatments of laser surgery later, the damage had been contained but I was left with poor peripheral vision and a big ol’ wake up call.
Soon after, I began to lose feeling in my feet. I googled Neuropathy.
I became fearful of even looking any lower than my knees. I was no longer denying I had a disease but I sure didn’t want to look at the inevitable complications those well-meaning health care professionals had been warning me about all those years. “You could go blind or lose your feet and even have your legs amputated,” one doctor told me. “But with proper care and management, you can avoid complications.”
Uh-oh. (“Proper care and management” was not exactly my strong suit.)
At some point, about two years ago, I stopped looking at my feet altogether. I would wear my socks to bed, lest I wake up in the middle of the night and accidentally see a toe peeking from under my comforter. I’d walk to the shower in the morning and take off my socks just before I got in, my eyes closed. I’d wash my feet but would not look down. Drying off, I’d reach for my ready pair of socks and pull them on while looking up at anything but what I was sure were my grotesque, ready-to-be-severed toes. This I did for over a year.
Then, some miracles began to happen.
How I learned to take off my socks and learn to look at, and love, my feet, is the first part of this journey, this project, this disappearing of T1D.
It starts with Randy McNamara walking into Chloe Gallery, owned by my brother Greg, his wife, Amy Nelder and me. Randy was looking for some art for his home. Along with the art he found, he ended up changing my world. He would probably say he simply invited me to transform my own life. In this blog, I will tell the story and let the reader decide.
All I know for sure is that life is a miracle.
Next blog post: “What happened at Randy McNamara’s House that gave me my world back”