Writing Diabetes

For some, diabetes is not just an illness, but a lifestyle. Author Lisa Roney talks about her new book and how diabetes has shaped her emotions, choices and identity.

By Owen C. Franklin

Most people can identify the trademarks of diabetes: the insulin shots, the glucose tests and the emergency bottles of fruit juice.

Fewer could name the health risks: the kidney damage, the nerve deterioration and the insulin shock.

And then there are the subtle but powerful ways that diabetes affects its victims. It takes a special lens to pinpoint these influences.

Lisa Roney, a diabetic since the age of eleven, can see these nameless forces. She's seen how this disease makes its way into the tiniest corners of her life to shape her emotions and behavior. In her book Sweet Invisible Body, she offers her inside perspective to the untrained eye.

Part memoir, part tutorial and part confessional, Sweet Invisible Body fills a much-needed gap in diabetes literature.

"I started looking for other diabetics' stories, but I couldn't find any," said Roney. "I was wondering why people with diabetes don't think of the disease as a story worth telling."

The reason may lie in the title of Roney's book.

"Diabetes is somewhat invisible, and I think there is a big difference between a disease you can see on the surface and one that you can't," said Roney. "Diabetes is a disease that a lot of people try to normalize."

Roney's anecdotes, however, show that diabetes is far from "normal."

For example, a "normal" life rarely involves continued picking and prodding at veins. On page 45, Roney recalls one of her earliest experiences with insulin injections.

She writes, "Try as she might, the nurse could not get the needle to pierce my veins ... the nurse moved the needle back and forth under my skin, twisting it sideways trying to nick the vein."

Such shocking episodes punctuate the book. The reader first meets Roney amidst a visceral recollection of a low blood sugar episode. There's also the time Roney nearly fell into insulin shock while traveling on a tour bus without any food. Hypoglycemia strikes in most every chapter, and once it nearly killed her during a long winter walk.

"I remember thinking 'oh my God, I nearly died this morning and nobody knows,'" said Roney. "You're walking around all day thinking how life is so precious and everyone thinks you're just acting weird. It's a kind of dramatic loneliness."

While this type of drama is clear, Roney dedicates most of her book to the less acute affects of diabetes. The bulk of pages clarify how this chronic illness has not only shaped, but merged with her identity.

She writes: "A great cosmic no was shouted at me at age eleven, and there always hovers over me a hand that waits to pluck security and happiness away each time they come to me. I have grown up in the looming shadow of that hand, and I seem unable to escape it." (278)

The ways in which "that hand" of diabetes guides Roney's behavior range from subtle to transparent. She describes her formative years, and the ways she rebelled against parents, teachers and any type of authority. On page 53, she shows how this defiance, portrayed as both a blessing and a curse, stems from her illness.

"I developed the habit of challenging other powers, other injustices — especially those I felt affected me — because I was powerless against my disease."

But as Roney explains, independence doesn't come easily to people with diabetes. Everyday, Roney must negotiate her need to be self-reliant with the simple fact that her life often falls into the hands of other people. At any moment, she may need a family member, lover or stranger to administer an emergency shot of insulin.

"Meeting people can be very strange," said Roney. "I mean, here's this person you are just getting to know and they might have to save your life. That's pretty intimidating.

According to Roney, this dependency can complicate any relationship.

On page 65, she writes: "Almost every relationship I've ever had — no matter how slight or close — has contained some element of tension."

Perhaps the most obvious influence of diabetes is the strict food regiment it requires. For some, this issue may seem cut and dry and rather insignificant: People with diabetes just have to watch what they eat.

But Roney reveals how food is more than simple sustenance.

She writes: "Would that eating were a mere bodily function, but it comprises a complex social matrix, and we all need to participate in it in order to be part of the group." (138)

She dedicates an entire chapter to the cooking rituals she enjoyed with her roommates. But reveling in food isn't easy for diabetics, and Roney must keep constant watch on every tidbit she puts in her mouth.

On page 239, she writes: "My doctor says that no one who attends as closely as I do to my diabetes goes blind, but every time I eat a cookie I wonder if this is the one that will push me over the edge to culpability."

For many people, Sweet Invisible Body may not seem like an uplifting piece of literature. Inspirational stories often focus on overcoming illness, and rarely include chapters entitled "Living Off the Looming Darkness" and "Mild, Little Nightmares."

While Roney's book may stray from traditional tales of survival, it delivers a clear, empowering message: Diabetes can become a part of who you are, and that part can be embraced and cherished.

"I really want to get people interested in their diabetes and how it works into their own personal stories," said Roney. "I think many people believe that, if they have an interesting life, it's in spite of their diabetes and not because of it. I don't think it has to be that way at all."