In the newly released True Believers, author Kurt Andersen’s narrator and lead character is a celebrated 64-year-old attorney named Karen Hollander. She also has T1D. Her diagnosis follows a memorable night when everything is perfect: She’s at the top of her high school class, she’s speaking at her graduation, and she’s been admitted to Radcliffe. The guy she’s been hoping to date, for years, is with her on prom night. Karen’s life seems so perfect right then that her frequent trips to the toilet are no big deal.
In the delirium of that phase-changing night, I chalked up my odd spiral of unquenchable thirst and endless urination to enchiladas and Pabsts and having my period, to overexcitement and staying up late and Mountain Dew. But it continued the next day and the next and then the next, and on Tuesday a doctor in Evanston told my mother and me that I had juvenile diabetes. For mysterious reasons, my pancreas had stopped working. I would have to inject insulin every day for the rest of my life.
Some 47 years later, Karen’s T1D has not hindered her successful legal career, and on one occasion it lands her a spot on Oprah. Karen is the dean of a prestigious law school and has been frequently mentioned as a possible nominee for the Supreme Court. She’s written several bestsellers.T1D has not kept Karen from realizing goals in her personal life, either, but it has required hourly attention. She’s a mother of two and a fit, healthy grandmother. She describes an argument with her 17-year-old granddaughter:
My peevishness with her is so intense that I wonder if I’m on a hypoglycemic downward slide. I keep glucose meters all over the place—bedroom, bathroom, kitchen, right here on the coffee table—so I prick my finger and squeeze out a drop: 117. Good. I’m just angry, not too low, for my meter tells me so.
“You okay?” Waverly asks.
“All good.” In the fifteen seconds it’s taken me to find out how many milligrams of sugar are floating in each deciliter of my blood, my love has dissolved my anger.
It’s clear that Karen has always been vigilant about her diabetes. She’s kept up with advances in medical treatment. She’s under the care of an endocrinologist and the burdensome daily requirements of T1D are routine. But, as all of us living with T1D know, constant vigilance and a blood meter in every room still doesn’t protect you from precarious life situations.
As I’ve explained, avoiding high blood sugars—what wrecks your blood vessels, your eyes, your kidneys—has its price, increasing the risk that your level drops too low, making you ”spaz out” (as Greta used to say) and become confused, scared, scary, even unconscious. In 1987, when Jack was in Europe at a music festival and I was alone in Brooklyn Heights with the kids who were twelve and three, in the middle of the night I had flailing convulsions and went into a coma. Greta awoke—I have no memory of this—after I knocked over and smashed the nightstand lamp, and called 911.
Andersen gets the descriptive details of T1D life exactly right. He gets Karen Hollander’s T1D mindset right, too. Did he do extensive research? Well, you could say he did a couple decades worth of research. He was diagnosed with T1D when he was 32. Like his heroine, he injects himself with insulin a few times every day. He does multiple finger prick blood tests and counts every carbohydrate. And like his heroine, Andersen has piled up impressive accomplishments. He’s a bestselling author and is a contributor to New York, The New Yorker, Time, and Vanity Fair. He was a co-founder of Spy and hosts the popular public radio program Studio 360.
Parents looking for positive role models for kids with T1D should know that True Believers is a book for adults. But 85 percent of people with T1D are older than age 20. They’re likely to find themselves nodding in agreement whenever Karen Hollander deals with her diabetes. At one point Karen tests her blood and gets the number 100. “The perfect number always pleases me, as if I’ve won a gold star. My brain chemistry is once again objectively normal.”
While Andersen’s main character lives with T1D and has to think about it constantly, her disease doesn’t drive the plot. It’s not a novel about living with T1D. It’s a thriller in which the reader waits for a mystery to be revealed. It involves a 64-year-old trying to accept a time in her life she regrets, when something drastic happened.
T1D figures in all 35 chapters of True Believers without being the story. That reflects an important truth about life with T1D: It’s always there, 24 hours a day and 365 days a year. While it requires more attention than anything else in your life, it doesn’t determine what will happen in your life or what your life will be about.
William Sorensen is National Director of Media Relations for JDRF. He has lived with T1D for more than 40 years.