How to Survive a Chronic Illness

Andy Steiner

We’re delighted to share this excerpt from chapter three of Andy Steiner’s How to Survive: The Extraordinary Resilience of Ordinary People. In this piece Andy introduces us to a terrifically positive woman named Dee, who overcomes mental health challenges.

How to Survive a Chronic Illness

Steiner_cvrA small, smiling, birdlike woman, Dee moves gingerly as she rises from her easy chair to greet me. She’s wearing a large neck brace and has one arm in a sling, but she’s smiling, a smile that takes up the lower half of her face and makes the skin around her kind eyes crinkle. The month before, Dee was in a car accident, and because her bones are weakened by osteoporosis, she broke her neck, back, rib and sternum. No one else in the car was seriously injured. Dee, you see, has many health problems, and, in the awkward juggle unique to modern medicine, she takes many drugs to treat those problems—and still many others to treat the life-threatening side effects of the drugs prescribed to save her life. Dee, sixty-nine, keeps her drugs in a tackle box. It’s easier to haul them around that way, she says, and the tackle box is smaller than the “washtub” in which many of the drugs were first presented to her twenty-two years ago after she survived a then-groundbreaking kidney-pancreas transplant surgery. (Dee’s osteoporosis, for example, is a side effect of the steroid drugs she’s taken since the operation to limit organ rejection.)

But Dee’s health problems actually started much longer ago. In 1968, when she was pregnant with her first child, Dee became sick with what was first diagnosed as gestational diabetes. After her daughter, Kim, was born, Dee’s diabetes did not go away as it usually does for women with the condition. Instead she became an insulin-dependent, or “brittle” diabetic, with difficult-to-control fluctuations in her insulin levels.

A trained nutritionist, Dee was religious about following a diabetic diet. She measured her blood glucose levels carefully, and followed her doctors’ orders to the letter. Still, for Dee, it was hard to keep the disease under control. She experienced wild fluctuations in her blood sugar and multiple diabetic reactions, including blackouts, erratic behavior and memory loss.

After years of struggling with the disease, diabetes injured parts of Dee’s body. For a time, she became legally blind—though laser surgery restored vision to one of her eyes; painful neuropathy reduced sensation in her hands and feet and made walking difficult; and her kidneys eventually failed, forcing Dee to go on dialysis. In 1989, seriously ill and desperate for a respite from the life-diminishing stress of dialysis, Dee volunteered for the then-experimental double transplant. Against all odds—the donor match wasn’t exact—Dee’s transplant was a success. The donor organs made a home in her body and keep working steadily nearly 25 years later.

While the pancreas transplant cured Dee of her diabetes, it did not cure her of the physical limitations that existed before the surgery. She lives with a challenging combination of chronic diseases, but she is determined not to let illnesses define her life.

“You will never hear my mom complain,” says Dee’s daughter, Kim. This morning, she’s the one who opens the front door of her parents’ lovely suburban house, ushering me in, serving me lunch. Her mom is taking it slowly in the days after the accident, and Kim hovers around her protectively.

“Mom’s had so many illnesses so much of her life, but she tries really hard not to make her life all about being sick,” Kim says. “She could, but she doesn’t. I don’t know anybody else like that. Sometimes I think,” here Kim pauses to smile, knowingly, “that her stubborn attitude is what keeps her moving forward despite all the stuff that threatens to hold her back.”

Chronic illness is part of life for nearly half of all Americans. According to the U.S. Centers for Disease Control and Prevention, in 2005, 133 million U.S. citizens—almost one out of every two adults—had at least one chronic condition. The treatment and prevention of chronic illness is a serious public health issue: Seven out of 10 deaths in the United States are a result of chronic disease.

Dee’s case is more extreme than most—chronic illness, or a disease lasting three months or more, is a loosely defined term, with many variations of severity and impact—but her perspective is helpful for anyone facing serious health challenges. Despite facing serious, even life-threatening disease, Dee has learned to live a happy, productive, loving life.

“I want people to realize that every morning when the sun comes out, you have been given a new day,” Dee tells me. “It’s a gift. Everything is starting over again. Forget about the last day. I think there are too many people who don’t look toward the next day and think positive, uplifting thoughts. I survive by lifting my spirits up.”

Excerpted from How to Survive: The Extraordinary Resilience of Ordinary People. All rights reserved.

Adam Wahlberg

Founder of Think Piece Publishing