by Elizabeth Lunt
Charlie Steele knew he was on the edge—he just never thought he’d go over. As a workaholic executive with IBM he worked long days and, fueled by cheeseburgers, fries, Pepsi and cigarettes, longer nights. After a diabetes diagnosis, his idea of self-management was to stop buying cigarettes by the carton. Sometimes he skipped the second Pepsi.
But that was 21 years and half a leg ago. Charlie, who is now 61, has had diabetes since he was 40. At first his health problems were attributed to the blockage of a major artery. He figured medical management would take care of it. His doctor told him to stop smoking, lose weight and exercise. He ignored the advice, but he began losing weight anyway, and he was also desperately thirsty. That was the diabetes announcing itself. Even after his official diagnosis, Charlie kept ignoring his doctors’ advice. A few years later he needed a quintuple bypass. “I smoked my last two cigarettes in the parking lot of the hospital,” Charlie recalls.
Not long after the bypass, Charlie woke up in the middle of the night with a blue, cold and painful left foot. He was admitted to the hospital, but the vascular surgeon who opened the leg closed it right up and announced that he had done everything he could possibly do. “If you don’t like what your doctor tells you,” Charlie says with a laugh, “get another doctor.” So he did. The second specialist tried creams and a hyperbaric chamber (a treatment to increase oxygen flow to tissues) to improve blood flow to the leg. Charlie thought for a while that the foot was a lighter shade of blue, but the leg wasn’t really improving. It turned out that Charlie had a rare allergy to Heparin, a blood thinner used during surgery to improve blood flow. The reaction caused his blood to clot and irreparably shut down circulation in his leg.
After three months in the hospital, Charlie had lost 100 pounds. He was pumped
up with antibiotics, but gangrene was spreading into his body and the nurses
could barely find an open vein for the intravenous lines he needed. “It
was a terrible period,” Charlie says. He was in so much pain that he sprained
his thumb pushing the button on the morphine pump.
The first time the doctors mentioned amputation, Charlie was shocked and horrified. But after three months of painful and fruitless efforts to save his leg, he was actually ready. “Fine, take it. I’m tired of it,” he remembers growling at the doctor. And then one day he was missing half a leg. Charlie said it was like a “typical movie scene”: one leg is down to the end of the bed and the other’s truncated outline is seen under the blanket. He had grieved the loss beforehand—“anticipatory grief, they call it,” Charlie says—but he was nervous about how he would cope.
The answer came quickly, in the form of a young amputee. Charlie was lying in his hospital bed, about to be fitted for a prosthetic leg, when the prosthetist told him that his assistant, Moe, who was bustling around the room getting everything ready, was an amputee. Charlie couldn’t believe it. “He showed me his prosthesis and my spirits were lifted 100 percent,” Charlie recalls. But the immediate future was tough: Once he got the prosthesis he found he was not like Moe yet—he had months of rehab ahead of him. He had to learn to walk, to go up and down steps and to fall. (“It’s very important to learn how to fall,” Charlie says.) In time, however, he was able to step back into his three-piece suits. He went back to IBM and “life went on,” he says.
Eight years later, after continuing to ignore his diabetes, Charlie needed another bypass. The grafts had not held in his diabetes-damaged veins. This time he paid attention. He began to read about diabetes, learning about diet and nutrition. “I became a partner with my physician in my own care,” says Charlie, who began cutting out articles and turned into a knowledgeable patient. Before it erupts, diabetes is silent and painless but is “usually stirring up like a volcano,” Charlie says. He wants to spread the word that people should not wait until their diabetes erupts.
Charlie’s mission now, as a motivational speaker and board member of the Amputee Coalition of America (ACA), is to talk to people with diabetes and encourage them to manage it. He tells them 225 people a day lose their legs to diabetes; 55 a day lose their sight; 120 a day suffer from end-stage kidney disease; and 580 a day die. He gets right in their faces, he says, and asks them: “Is this what you want—is this the risk you are willing to take?” He tells them 70 percent of the serious consequences of diabetes can be avoided with better compliance.
He also works hard promoting the ACA peer-visitor program—because he will never forget his relief at meeting Moe. People need support from others who have experienced the same thing, Charlie says, and he wants hospitals to provide the programs. After morphine, a visit from an amputee peer visitor is ranked as the most valuable intervention by returning war veterans with amputations. “If you can reduce anxiety and stress about losing the limb,” you can avoid other problems in the future, Charlie emphasizes.
Charlie also says that a good attitude allowed for his successful transition
to active amputee. “I had to realize I wasn’t going to dunk the
basketball,” he allows, but he realized after seeing Moe that he could
be active again, and that he could motivate others. “After they teach
you how to fall, they teach you to get back up again,” Charlie says. And
he wants to help others do the
For more information about the Amputee Coalition of America please see Resource Roundup.
Elizabeth Lunt, MS, has worked in publishing and libraries for many years. She is the editor of Voice of the Diabetic and would like to hear your
comments about this article or any other in the magazine. Please send Letters to the Editor to: Elizabeth Lunt, Editor, Voice of the Diabetic 1800 Johnson Street, Baltimore, MD 21230 or [email protected]