As an invisible illness, diabetes can feel terribly isolating, especially when first diagnosed. Many of us remember the first person we met who also had diabetes. For author Amy Stockwell Mercer, who was diagnosed with type 1 diabetes 25 years ago while at boarding school, her first D-friend came from a very unlikely source. Today, Amy shares her memories of this first friend, and how that connection helped inspire her new book, The Smart Woman's Guide to Diabetes (a title that AmyT and I can definitely get behind!), which comes out in August. You can also check out Amy's work on A Sweet Life.
A Guest Post by Amy Stockwell Mercer
The first person I met who had diabetes was Lillian, the head nurse at my boarding school in New Hampshire. I got sick in October, and when I returned to school after my diagnosis, there was no one else but Lillian, a 55-year-old school nurse, who shared this disease.
It was 1985 and at 14 years old, I was interested in Prince, Cherry Coke and the Preppy Handbook. I was not interested in learning a language of illness, of amputations, complications, doctor's appointments, carb counting and a diabetic diet. I was also not interested in accepting advice from an older woman. This was 25 years ago, before websites like Diabetes Mine, TuDiabetes and Diabetes Sisters allowed you to connect with people of similar interests, age and gender. As far as I knew, living in the middle of the New England woods, I was alone with this hateful disease.
I remember one afternoon skipping field hockey practice because my blood sugar was low. I told my coach I needed some sugar and went back to my dorm for the rest of the afternoon. My coach told Lillian, who called me into her office for a "chat." I rolled my eyes as Lillian launched into a story about the time her blood sugar dropped when she was a teenager. She told me she'd been canoeing with her sister when she started to feel shaky, and so she stopped paddling immediately. She called out to her sister to "get us back to shore!" and sat still on her seat in the canoe, knowing if she'd tried to help — to paddle or run back to the house when they made it to shore — things would only get worse. Lillian's sister pulled them onto the beach, ran to the house, and got a glass of juice. She drank the juice, waited for a few minutes, and then they paddled back out in the lake.
I wanted to throw up. I was 14 years old. I was nothing like this prim woman sitting across from me in her starched uniform, her hands folded neatly across her lap.
"You don't want to get in the habit of using diabetes as a crutch," Lillian said. "Next time you're low, ask for some juice and get back in the game."
I was outraged. This disease had been forced on me; there was no one else at school stuck with giving shots and pricking their fingers. How dare she tell me I was using this disease as a crutch? But I kept silent and slunk out of the infirmary with her words lingering in my head.
For years I missed out on Lillian's lesson. Instead of seeing the victory in her paddling back out onto the lake after her low, I only heard the word 'crutch.' But my fear of using diabetes as a crutch pushed me to prove that Lillian was wrong, and that diabetes would never keep me from doing what everyone else was doing. Her words pushed me to climb the Grand Canyon, to study art history in Italy, to jump out of a plane, and to run a marathon. For years that word burned a hole of shame and determination in my brain.
It's been 25 years since I was diagnosed, and I am now a mother to three beautiful boys. I am a writer and have just published a book, The Smart Woman's Guide to Diabetes: Everything from Eating to Dating to Motherhood. I am no longer angry or shamed about living with diabetes. I am resolved, maybe, and accepting of myself as a woman with diabetes. My journey from denial to acceptance was long and rocky and it's really only been in the last few years that I have started to see diabetes as something other than a burden. Don't get me wrong, there are plenty of days where my blood sugar is high for no reason and diabetes feels very much like a burden, but I am learning (slowly), to accept all of me — the good and the bad, the beautiful an the ugly, the highs and the lows. And most importantly, I'm learning that I'm not in this alone.
If I could talk to Lillian again, I would tell her that the definition of a crutch is a 'support used to aid in mobility and movement.' A crutch supports your weight when you can't do it on your own. I would tell Lillian that while I don't use diabetes as a crutch to get me out of commitments, I do need a crutch (aka support network) to live well with diabetes. I finally see that she was trying to show me her own determination that day. She stayed in the canoe, asked for help, and went back out in the lake; she didn't give up. I wished Lillian hadn't said the part about the crutch, but maybe I wouldn't have worked so hard all those years to prove her wrong.
Lillian's story was the first in my collection, and in the last few years I've continued to gather stories from women living with diabetes, women who were different from me in age and personality, women who lived in different parts of the country and even across the world, women who were athletes, doctors, educators, mothers and writers, women who were married, single and widowed. I've collected these stories for my book because I wanted other women to feel connected and know that they are not alone in managing this illness.
On days when I have a deadline, and my 2-year-old is sick, and the dog has fleas, and we're out of milk, and there are two homework projects due the next day, and my blood sugar keeps dropping, I know there are other women out there who can relate. Whether we pick up a book, go online, call a friend, or remember a 25-year-old story of determination, we are in this boat together. We are women who day after day, pick up the paddle and head back out into the lake.
Amy's book comes out on August 9 and will be available on Amazon and in bookstores for $16.95.