Living with Diabetes ... in Print and Otherwise

“Reflections on a Life with Diabetes: A Memoir in Many Voices” arrived in the mail last week. I devoured it whole.

The book—which contained one of my contributions—was published in 2004. I missed news of its publication because, in the interim between writing and submitting my piece and its’ eventual printing, I moved to Bayfield, WI. Once I wandered into the woods I became a creature of the forest and, literally, lost track of my previous life—and pursuits—in the city. (See September 21, 2009 post: “Reflections on a Life with Google.”)

Sure enough, reading this book was an affirming, alarming, fear-inducing, reassuring, and ... a power-full and power-filled experience. Of course, I write this sentence immediately after testing my blood sugars for the fourth time today and discovering—after a day of higher-than-normal sugars—that I’m now too low. Don’t worry. I’m chomping on an apple as I write.

The stories contained in this book are reminiscent of stories told in the diabetes support group I formed and co-facilitated in the late ‘80s and early ‘90s. Members of my support group—and this book group—share our fears, challenges, hopes, and failures openly with each other because we trust that those of us with this disease understand. We’ve lived life, day-after-day and year-after-year, knowing how unruly and unmanageable, how frustrating and flagrant, how debilitating and rehabilitating diabetes' effects are on our lives and relationships. And—most significantly—on our bodies and souls.

I formed my support group several years after my diagnosis when a relaxing soak in the tub segued into a four-hour plunge into unconsciousness. After several years of living with insulin-dependent diabetes I quickly learned the dangers and disasters of insulin treatment for the disease. But I also discovered from other women in our group that there were untold complications that haunted and plagued us as well.

The most frightening story came from a group member who suffered from autonomic neuropathy. Over a 14 year period her internal organs slowed ... and then shut down one by one. Diagnosed at 21 she too-soon experienced stomach, kidney, and intestinal problems that led to a pancreas transplant. When the transplant failed, her complications continued to mount. She died at age 35.

THIS BOOK is a support group too. It goes beyond the firsthand experiences of people with diabetes to include family and friends. And this collection of stories and poems is filled with emotion: longing, regret, strength, resilience, anger, fear, and reconciliation.

It’s liberating to delve into the subterranean expanse of diabetes, a place that’s typically occupied only by those of us who live with diabetes and those family members and friends who live closely with us. The reader quickly confronts his or her misperceptions about diabetes. Clearly, low-sugar diets and regular exercise are minor players in a complex regimen of self-care.

I’m proud and honored to be included in this collection of stories and poems about life with diabetes. It proves undeniably that anyone who lives with this illness cannot be labeled or categorized by the one-word descriptor: diabetic. We—and those who love us—have learned to incorporate diabetes into our lives but not to become it.

One thing is clear from reading this book: There are still too many misperceptions about this disease ... so much unnecessary shame. Too many fearful and challenging moments when we discover diabetes’ debilitating effects on body and mind, energy, relationships, and so much more.

But this book also proves something I’ve known for many years: We are survivors. As we balance on the tightrope of diabetes self-management we discover that, despite the highs and lows (blood sugar and otherwise), we will continue on ...