Reid is still nursing at least twice during the night. He wakes up crying at midnight and again at 4 a.m. and I drag myself out of bed, carrying his heavy, warm body to the big green chair in the corner of the living room. While he nurses, I read Facebook posts on the small, lit screen of my iPod touch.
On a recent sleepless summer night, I read a post about the Diabetes Sisters’ annual conference. This is a nonprofit organization dedicated to women with diabetes, located in North Carolina. I wanted to go to the conference, but it was scheduled in May, the same month as my MFA residency and graduation. That night, as Reid nursed himself back to sleep, I read a post taken from a Huffington Post column that was written by Riva Greenberg, an attendee at the conference. Greenberg wrote about being inspired by the keynote speaker: former Miss USA and type 1 diabetic, Nicole Johnson. “It became more and more evident Ms. Johnson sees diabetes as a blessing,” Greenberg said, reporting that Johnson told the audience of women, “Although I’d love to get rid of this disease, I wouldn’t trade it for the world because of the perspective it gives me.”
I gasped loudly in the silence of our sleeping house. She wouldn’t trade it for the world? Angry and offended, I sat upright in the chair, startling Reid. How could she say that? She, who because her name and face is recognizable, has a ready platform for diabetic women wanting to hear her message. How could she minimize the awfulness of this disease? And why was our society so desperate to hear only happy endings, why are we unable to confront the ugliness in life? Fired up, I wanted to know why society only wanted to hear from the pageant winners of the world.
Sitting rigid in the chair, I knew I would rather choose freedom from this disease than “perspective.” I would rather choose a life without multiple daily injections or wearing an insulin pump; a life without countless daily finger pricks that have hardened my fingertips so much I have to stroke my baby’s face with my cheeks. I would gladly give up all those hardships in exchange for a life free of wisdom and perspective. I felt like all of the worst women in the fairy tales of my youth: Cinderella’s ugly step-sisters, Snow White’s jealous step-mother, the Wizard of Oz’s wicked witch and the bossy, rich Veronica of Archie comics. Listening to Reid’s greedy gulps, I felt like I was feeding him poison from my jealous, bitter breasts.
Back in bed I couldn’t sleep. Why was I so bitter? Why wasn’t I like Miss USA, smiling about diabetes? Why couldn’t I just be happy? Why couldn’t I see the good in this disease? If I could change my life, I knew I would rather be a superficial, disease-free woman than a woman who’d learned to be strong because of living with this chronic illness.
We recently returned from a family vacation in Maine and in the cars and planes, we played I Spy and MASH and I listened to my boys describe the kinds of cars/rollercoasters/planes they would build if they could. Will would say, “If I was a car designer, I would build a car that had a bathroom, an upstairs playroom with a video game suite, a pool, and a vending machine filled with candy.” I loved to slide in and out of their conversation and listen to my children’s imaginations grow like Jack’s beanstalk, reaching higher into and beyond the clouds, free from the harsh grounding of reality. How many times as a child did I wonder what my life might be like if I were a Jessica instead of Amy, or a princess instead of a regular girl? How many times throughout my 25 years of life with diabetes have I wondered who I might be without it? Would I be less serious, less controlled, less bitter? Would I be a more carefree woman?
Waking up the next morning I checked my blood sugar, made coffee, nursed Reid, ate breakfast, and went for a run. As I ran through the streets of my neighborhood, I thought about my own childhood games. I remembered countless hours of playing Barbies with my best friend, Robin. We would take the Barbies camping, and carry them outside to the moss that grew behind my barn. The dolls would tiptoe across the squishy green moss on their pointed toes toward the stream to get a drink of water, or wash their long blonde hair. But no matter what kind of elaborate story we created, playing Barbies would grow old, and Robin and I had to throw in a bear attack or wildfire to stay interested in our game. As I ran past the still-sleeping houses that morning, the newspapers lying flat and wet on the lawns, I realized that Barbie was more interesting outside in the real world than inside her dreamhouse and that Cinderella needed her ugly stepsisters, just like Betty needs Veronica. As much as Veronica drove me crazy, hogging Archie’s attention, I couldn’t see the good in Betty without Veronica. As I neared our house and slowed to a walk, I wondered if maybe Miss USA was trying to say yes, this disease sucks, but it’s a part of who I am.
At home I re-read Greenberg’s post. I paid attention to the whole story and saw something that in my anger I’d missed the night before. Greenberg wrote,
“In other words, when life throws us a curve ball like diabetes, or any other challenge, it is up to us how we choose to see it and what we do about it. Do we see a possible gift in what we’ve been handed and perhaps use our challenge to develop greater strength and courage or do we only see that we’ve been injured?”
I knew it was time for me to look beyond my injuries. I knew that without diabetes, I wouldn’t have this story to tell; a story that has led to a book contract about women with diabetes. I’m writing a book that I want to read; an advice book, a how-to guide about living with diabetes as a woman. The book will include the kinds of stories I want to hear, stories from real women telling the good and bad of this disease. And while I will never call diabetes a gift, after 25 years, I am beginning to see that there is no beauty without ugliness.
My books needs balance, so I will include stories from women with beauty and blessings, like Miss USA, alongside the stories from young women I interview like Kayla, who is filled with anger and frustration, and who says no one knows what it is truly like to live with this disease. A part of me agrees with Miss USA and knows that I wouldn’t be who I am today without this illness, but another part of me knows that beauty and blessings can never exist without ugliness and frustration. We all have a little of Betty and a little of Veronica, a little Cinderella and a little of the stepsisters inside, and all our stories need to be told.