Long Time, No See

UNIVERSITY OF ILLINOIS PRESS

Contents

Prologue: The Lights Go Out.....................11. My Two Companions............................212. Braille Jail.................................443. Blind Christmas..............................594. Gus..........................................735. Another Sort of Trouble......................1006. Pandora......................................1187. Adventures with Gus..........................1318. How I Do It..................................1539. Looking for Work.............................177Epilogue........................................193Acknowledgments.................................203

Chapter One

I was seven years old in 1966, when I was diagnosed with juvenile diabetes. My lasting memories of that period have mainly to do with urine: constantly going to the bathroom, wetting myself every night and almost every day. Although I went to Girl Scout day camp that summer, my recollections do not involve making a pair of beaded moccasins or swimming or learning clever campfire songs. All I remember is that the camp had outhouses, smelly outhouses.

My situation worsened until I rarely managed the entire bus ride home from camp without an "accident." I sat in the back, hoping no one would notice. The bus dropped us off at our elementary school, and from there I'd hurry home to clean up. One day a friend of my sister Cheryl decided to surprise me by picking me up in his Corvette. How I would have loved that ordinarily, the spectacle of riding in his convertible! Instead I was horrified. I didn't dream of telling him about my soiled outfit, and I was scared to death I'd wreck his car seat. All the way home I did my best to levitate.

My pee problem went on and on—I remember some suggestion that my incontinence might be "emotional." But later that summer our family joined Aunt Arjean, Uncle Ray, and cousin Randy, who was a juvenile diabetic, on a drive to visit some older relatives at their Wisconsin cabin. In our first hundred-mile stretch Uncle Ray had to pull the car over four times to let me squat in roadside cornfields. Aunt Arjean became suspicious about my symptoms. When we arrived at the cabin, she used one of my cousin's urine test strips to check me. The visit was cut short, and next thing I knew, I was in the hospital.

Diabetes is an absolutely diabolical disease. With as many as twenty-four thousand new cases of blindness caused by diabetes each year, it's the leading cause of blindness in adults. Diabetes accounts for 40 percent of new dialysis and kidney transplant patients—about thirty thousand per year—and is therefore the leading cause of kidney failure in adults as well. It leads to circulatory problems that can cause nerves in the fingers, hands, toes and feet to go numb, or, sometimes, to scream out in pain. Poor circulation is also why diabetes is a leading cause of impotence in males.

Low blood sugars can cause a diabetic to become unresponsive and pass out; high blood sugars can fill the vascular system with toxic ketones and acid, causing diabetic coma. Wounds heal slower in diabetics, sometimes leading to gangrene. Diabetes is the most frequent cause of non-traumatic lower limb amputation.

Diabetes hastens cardiovascular disease. A middle-aged person with diabetes is two to four times more likely to have a stroke than is a non-diabetic.

In short, diabetes effectively compromises and shortens millions of lives.

Diabetes is a confusing and misunderstood disease, due in no small part to all the different names and terminology used to describe it. Take juvenile diabetes, which is also known as Type I, or insulin-dependent diabetes. Somewhere along the line the term "juvenile" stuck, because Type I diabetes most often develops in kids. Yet it's not uncommon for adults to develop it. (My sister Bobbie has "juvenile" diabetes, even though she was diagnosed in her late twenties.)

In juvenile or Type I diabetes the pancreas simply shuts down. More precisely, the cells that produce insulin, cells that happen to reside in the pancreas, stop functioning. Insulin is a hormone that allows the body to metabolize sugars. Without it, sugars (and starches that are converted to sugars) cannot be processed, and so pass right through the system. That's why I had to pee so much back when I was seven—what I drank and ate ran straight through me. It's also why I was so skinny. Without insulin, diabetics effectively starve to death, unable to take nutritional value from food. That was the fate of Type I diabetics until scientists learned that insulin injections could provide some approximation of normal pancreatic function.

Type I diabetes is a matter of heredity, not behavior. Type I diabetics seem to be born with a trait that incapacitates insulin-producing cells. It runs in families (my cousin, my sister, and me). Many theories have been suggested to explain how and why this happens. The most intriguing these days is that something causes the immune system suddenly to misidentify the insulin-producing cells as intruders. The body then attacks and destroys these cells, just as it might attack a transplanted organ.

Research on Type I diabetes is being conducted on many fronts. On the genetic side, scientists are trying to pinpoint the trait that causes the body to turn on itself. There are also ongoing trials in which children with a family history of the disease are monitored and given anti-rejection drugs to head off its onset.

For thirty-five years now, doctors have been performing pancreas transplants—or, more commonly, kidney-pancreas transplants. The kidney is added to the equation because diabetes is particularly destructive to parts of the body, such as the eyes or kidneys, that rely on very small blood vessels. When successful, the transplants restore the recipients' ability to produce insulin. But they are major operations. The anti-rejection drugs carry their own well-known difficulties, and organs are in short supply. Another approach, one I find the most promising, involves transplanting only the insulin-producing cells. Problems remain, but recent trials have produced good results, so there's reason for Type I's to be optimistic.

In Type II (also known as adult onset) diabetes, the insulin-producing cells are overwhelmed, rather than destroyed. Typically some condition or combination of conditions—obesity or age—brings it on. The insulin-producing cells continue to function, but they can't keep up. Type II diabetics can often "cure" themselves by losing enough weight to bring their demand for insulin in balance with their ability to produce it. Of course, losing weight is easier said than done, and often Type II diabetics can't manage it. They (and Type II diabetics who are compromised for other medical reasons) may require oral medication or insulin injections to control the disease.

The dirty little secret among diabetics is that we Type I's resent Type II's: We think they give us all a bad name. This is less their fault than a symptom of how frightening is the prospect of serious illness. Because people want to believe the afflicted are to blame, they focus on avoidable behaviors. "Well, he smoked," they think when a friend gets cancer, or "She was a couch potato," when a co-worker experiences heart trouble. When people find out I'm diabetic, they often boast to me about not letting their children (or sometimes themselves) eat sweets....