Seeing illness through the eyes of a patient
I sat in the waiting room and eyeballed the patients across from me. A middle-aged blind man with dark glasses sat on the couch, a white cane propped against his knee. There was an elderly man in a wheelchair with an artificial right leg. It had a brand-new black sneaker and a white sock on the end of it. His left foot was bare, swollen and purplish in color; all his toes except the middle one had been amputated. A thirty-something woman with a bronze complexion smiled at me when she saw me looking at the dialysis shunt in her left arm. We were all waiting to see Dr. Jackson, the diabetes specialist.
Here I was, in a role reversal. I was the patient, a newly diagnosed insulin-dependent diabetic, waiting to see the doctor. As an internist, I understood the pathophysiology of the condition, and I understood the possible complications. After all, I dealt with them every day in my own patients. But now I was scared -- I didn't want to go blind or have toe amputations or kidney failure. My fear was palpable, and it reduced me to just one thought: I just wanted somebody to take care of me, to tell me things would be okay. To tell me that there was a cure, or better yet, that the lab had made a mistake -- that I really didn't have diabetes at all.
Denial worked for a while, despite the obvious symptoms six months earlier, when the disease began to take over. I had always thought of myself as an athlete (and I had been a decent one), as a person who never took a sick day, as someone who was not dependent on medication. I was proud to say I worked 80 hours a week. Then suddenly I began to feel weak. I lost weight, and I couldn't concentrate. I had no energy to see patients. One night, after I awoke and felt parched, I realized I had been thirsty for days. It hit me like a ton of bricks: I had diabetes, just like my father and my sister. The following day, at the hospital, I had a nurse do a fingerstick test on me. My blood-sugar level was raging.
Several tests followed, and my diagnosis was confirmed. I started taking oral diabetes medicine, stopped snacking incessantly, and cut concentrated sweets from my diet. I also initiated a regimen of my own creation. I began to run ten miles in the morning and ten miles in the evening, convinced that I could "burn off" the excess sugar in my system. I ate only protein and vegetables, cutting out carbohydrates completely. I didn't do this because I thought it was healthy -- any doctor or reputable nutritionist would tell you this kind of diet is extremely unhealthy. I did it because I thought I could "cure" diabetes with a punishing routine. After three months, my blood-sugar level had not changed. I had full-blown insulin-dependent diabetes mellitus.
When I finally accepted the diagnosis, I decided to make an appointment with Dr. Jackson. She was encouraging about one thing, at least. "Kevin, you're doing a good job," she announced. "You're over the first hurdle. You're no longer in denial."
It was nice to hear those words, and I was glad that I had acknowledged the diabetes so I could control it, but this patient thing wasn't going too well for me. I preferred being the doctor -- it's no fun when you're not the one in control, when you're not the one with all the knowledge and good advice. My first few hours as a patient were a lesson in humility, at best.
I had waited an hour and ten minutes to see Dr. Jackson. When the nurse finally put me in the examining room, I was relieved, but slightly annoyed at having to wait so long. I put on the skimpy johnny and sat on the stiff paper at the end of the table. I sat there for another 40 minutes. When Dr. Jackson finally came in, she spent exactly ten minutes with me, scribbled out several prescriptions, and sent me to the lab, where I waited again. An hour went by. Finally, someone brought me in to have my blood drawn. It had been a long time since I had had any tests done. The smell of rubbing alcohol and the sight of my bulging vein being pierced with the needle almost made me faint.
There was a long line at the pharmacy, and I was the only person in line under the age of 70. I waited for a half hour to hand in my prescriptions, and an hour later, they called my name. Since they had only a day's supply of the syringes I needed, I was asked to come back the next day.
When I got home, my wife had spaghetti waiting for me with a warm loaf of Italian bread (not a good meal for someone with diabetes, but I was too tired to complain). I took my oldest daughter, Katie, to swim practice and went to the donut shop, where I ordered a cup of coffee and a honey-dipped donut. I sat and ate it silently. This business of being a patient with a chronic condition -- this was definitely not going to be easy.
The next day in my office I treated an obese forty-year-old woman with diabetes. She complained that the insulin I had prescribed was making her fat. She said she loved to eat and that she controlled her blood sugar with frequent injections of Humalog, a short-acting type of insulin that she described as "liquid gold." I said, "Look, Mary, you really have to lose some weight. You're going to kill yourself like this." I went over what I thought was a sensible dietary and exercise regimen: three square meals, a few healthy snacks, and 20 minutes of walking per day. I tried to get her to adopt the motto "everything in moderation." We wrote it all down, and we even included "points" she could earn for every day she stuck to the plan. Mary could later redeem these "points" for small servings of ice cream or chocolate.
As I drove home that evening, I decided to make a regimen for myself. Still unwilling to give up my athletic self-image, I planned to exercise vigorously every morning and evening, and limit my diet to protein and green vegetables. I didn't think I needed redeemable "points," because I didn't have any intention of cheating on my diet.
It lasted about a day.
The thing about diabetes is that it is often possible to control the disease if you are extremely disciplined. But I, like most of my patients, hate routines. I like to be spontaneous (this particular characteristic drives my wife crazy). I'm still learning to plan my meals. And instead of trying to run ten miles twice a day, I try to do something active every day.
Having diabetes is as constant a condition as being human. It means giving up a bit of control over your life. It means you are a patient. It means that punishing grip you have of the "perfect" you has to be released. It means allowing your mistakes to be lessons, not reasons for giving up. And then you go into the unknown a lot humbler and a little healthier than you were the day before.
Humility doesn't always work to make me healthier. Or smarter. Sometimes it just makes me want a reward for having to be human. Last Sunday I devoured an entire large bag of potato chips while I watched the Super Bowl. Then, like Mary, I injected some "liquid gold" -- and watched the rest of the game.