When I opened my email a few months ago and saw something from “Lisa,” I sat there staring at the screen for a few minutes.
“No way…” I murmured under my breath. I opened the email to read Lisa Roney, author of Sweet Invisible Body, introducing herself to me and telling me she had come across my blog.
It was one of those moments that I couldn’t quite wrap my head around. Lisa Roney wrote the book that inspired me to write about diabetes. It was her voice that gave me hope during a very difficult time in my life. It was her book that served as an oasis in the desert of disheartening information about diabetes. Sweet Invisible Body proved to me that it was possible to be twenty something and live a vibrant life with diabetes, while still acknowledging the emotional spin-cycle.
By reading those pages, I knew I wasn’t alone. So when she agreed to an interview, I was beside myself. (Actually, I was beside the cat, but that doesn’t sound quite as eloquent.)
Over the course of almost two hours, we talked about diabetes. We also talked about a car named Ramona, tossing ashes out of a moving plane, and Nancy Mairs.
Diagnosed at the age of 11, in January of 1972, Lisa was already in the hospital for a broken ankle and finger due to a horse riding accident.
“While I was home recovering, I was in a wheelchair. My mother had to bring me to the bathroom, bring me my drinks, and take care of me. As I recovered from the accident, my diabetes symptoms were becoming obvious. There’s no pattern of diabetes in our family, but my mother remembered the symptoms from the Cherry Ames stories. So she took me to the hospital and I was diagnosed.”
At the time, home glucose meters weren’t readily available. Diabetics were testing their sugar levels via urine samples. Although she is currently using an insulin pump, Lisa talked about the home glucose meter as the biggest medical advancement in the treatment of diabetes, summing technological progression up simply with, “I love my meter.”
“Are you a person with diabetes or a diabetic? And do you really care about the semantics?” I asked.
She told me of a time when she was surrounded by doctors and nurses, listening in to their medical chatter, referring to the patient in room 4B as “the stab wound” and the one in 6A as “the migraine.”
“I understand the need for the politically correct term. But it’s not as much for the patients as it is for the doctors. Doctors need to remember that their patients are more than just their conditions. They say ‘diabetic’ as though the patient doesn’t even have a name.”
While the labels weren’t much of a concern, the daily challenges of diabetes proved to be more troubling.
“When I was first diagnosed, I was fearful of episodes of hypoglycemia. Now, the biggest challenge is the frustration towards people who think it’s this easy thing- but it’s not just a pill or an injection.”
We talked about the cure that the medical community has a tendency to dangle in front of us, like a carb-free carrot.
“A cure, a cure. Only five years away, or so they say, eh? You’ve been told this for over 35 years. What is your perspective on this ‘cure’?”
“I’m of two minds on this topic. There are things we need to say in order to get the cash. It’s a social injustice how under-funded this [diabetes research] is. But I wish patients were told the truth.” She added that she isn’t waiting for a cure, nor does she count on one.
I nodded, though she couldn’t see me through the phone.
For her book, Sweet Invisible Body, it seems that her reasons for writing it are so similar to the reasons I started to blog.
“I was trying to find my voice. There were books written by the deaf, the blind, those with cancer … but nothing about diabetes. But there were all these cookbooks!” Lisa laughed. “So many cookbooks.”
“Right. But who are they feeding?” I asked.
“Exactly. Who are they feeding? I was told I had a weird sense of plot. And all I could think was ‘Right. I’m supposed to be dead.’ I mean, for all intents and purposes, without insulin, I would be dead right now.”
Instead, she wrote a book that is among the most highly-regarded in the diabetes community and among the most dog-eared of my extensive collection.
As well as providing me with a recommended reading list that took up the better part of a sheet of legal paper and some laughs about the VW culture-phenomenon, Lisa also entertained my hot air balloon question.
“The Great Smoky Mountains National Park. I used to hike there all the time. I miss the mountains.”
Thank you, Lisa, for being exactly how you are on paper – warm, funny, accessible, and real.
Lisa currently teaches creative writing at the University of Central Florida. If you haven’t read Sweet Invisible Body yet (shame on you!), you can purchase a copy here. If you would like to sponsor Lisa and her Tour de Cure team, click here. And if you have a story you’d like to share on SUM, please send an email to firstname.lastname@example.org.