A fascinating and inspiring biography of an extraordinary ordinary woman dealing with much more than a fair share of life's challenges.
Long Time, No See
By BETH FINKEUNIVERSITY OF ILLINOIS PRESS
Copyright © 2003 Board of Trustees of the University of Illinois
All right reserved.ISBN: 978-0-252-02827-4Contents
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
My Two Companions
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. Diabetes runs in the family, they explain, so they have to be careful. I wonder whether they know the difference between Type I and Type II, or which one runs in their family. I assume they think I stuffed myself with ice cream and cookies as a child, or, worse yet, that my beloved mom—I affectionately call her by her first name, Flo—let her seven kids gorge on sweets. It makes me mad.
But I can't claim we Type I's are angels when it comes to casting blame. "All those Type II's need to do is lose weight," we tell ourselves. We would kill for that option. And we despise the overweight Type II's for contributing to the supremely aggravating myth that our disease is somehow traceable to eating too many sweets. Insofar as M&Ms and Twinkies contribute to a weight problem, yes, they could lead to Type II diabetes. But Type I's are the righteous diabetics. For us, it's heredity, dammit!
So don't confuse the two diseases. It's serious business—research dollars and potential breakthroughs hang in the balance. I can't help believing we'd all be better served if there were separate names for these very different diseases.
While Type I's still await an outright cure, there has been important incremental progress in how the disease is managed. Management is commonly thought to be a matter of avoiding high blood sugars. That's true, as far as it goes, but you can take too much insulin and drive blood sugars dangerously low. The Holy Grail of sugar levels is 100 milligrams per deciliter (mg/dL). Test a non-diabetic's blood at any given time and the reading will be around 100. Diabetics always shoot for that norm. Higher levels create conditions where the extra sugar in the bloodstream can cause complications: kidney malfunctions, gangrene, or blindness.
When is blood sugar too low? That varies from person to person. There's a stage, whether at 70 or 50 mg/dL, where you feel drunk. You get giddy, or maybe you get nasty. If someone asks if you're all right, you'll swear that you're fine, but your judgment is off. Below this level, things can become very problematic. You can simply black out. This could happen when you're driving. Even the diabetic under good control is never far from hazards of low sugars.
Diabetes management is also made difficult by the complex interplay of diet and exercise. The human body—a healthy one—ingeniously monitors itself, constantly altering the amount of insulin it produces to suit the situation. During and after a big meal, it pumps out insulin. During exercise or between meals, production slows. The body adjusts for illness, pregnancy, adolescence, stress, and other conditions. Remember that 100 mg/dL? The average nondiabetic, despite these variables, will still test out to about 100, whereas even a religiously diligent diabetic can spike to 300 or 400 with the onset of the flu. Over time, too many high numbers can result in horrendous diabetic complications.
* * *
When I was diagnosed in 1966, I spent two weeks in the hospital. Doctors armed my mom with urine test strips, syringes, insulin vials, and menu sheets to use after my release. I took one shot a day at home. My mother and I would conduct urine tests, record the results, and show them to my doctor at my semi-annual appointments. Based on those tests, he might adjust my daily insulin and/or suggest a change in diet.
Today, a newly-diagnosed seven-year-old Type I diabetic might still be admitted to the hospital, but only for a day or so. She and her parents would go home with an electronic blood glucose monitor that, while still requiring finger pricks, makes glucose testing convenient enough to perform several times daily. She might use two kinds of insulin, one long acting, the other short. She'd likely take three to six shots a day, and—working with her doctor or nurse practitioner—her parents could adjust her insulin levels on a weekly, daily, or even shot-to-shot basis, depending on test results. She might even be given an insulin pump, a little box attached to a tiny tube that connects to her body through a needle under her skin. Worn under clothing or on a belt, the pump continually delivers a base level of insulin and allows her to pump more insulin at meals by pushing a button.
The net effect for the girl diagnosed today is a smoother tightrope walk, a narrower range of blood sugars on a daily basis. A bigger hassle for her in the short run, but over the long haul she'll be much, much less likely to suffer diabetic complications such as blindness.
Yet, fundamentally, today's seven-year-old faces the same reality I confronted in the 1960s. She and her parents have more tools, but she is still insulin dependent; if anything, all the new technologies mean that insulin dependence will disrupt her day-to-day life even more than it did mine. She'll have to come to terms with this unwanted companion, as I did.
Or didn't.
When I was seven, my two-week hospital stay mainly meant gifts and extra attention, and the promise that, if I took my shot every day, I wouldn't wet my pants anymore. The special attention continued when I returned home.
"Don't eat that! That's for Beth!"
"You'll have to wait. Beth needs to eat first."
These admonitions to my siblings became typical in our house. My notoriety was precious in a family where there were seven kids and a widowed mom working full time.
For a long while after my hospital discharge I slept with Flo to help her detect any nighttime low blood sugar attacks. I'd wake up to the smell of a special breakfast cooking just for me, then hear a click, click, click. It was her wedding ring striking the glass as she rolled the insulin vial gently between her hands. Nurses had instructed her to mix up the insulin before using it, but not to shake the bottles too much. "If you get bubbles in there, they'll end up in the syringe," they warned. Morning injections from Flo became as routine as brushing my teeth. A needle prick was a small price to pay for all that one-on-one attention each morning before she left for work.
Flo had served as den mother for my Boy Scout brothers long before I was born. She hadn't done anything like that since, never a Scout leader or even a room mother for any of my sisters. But now, having just turned fifty, she became a co-leader of my troop. How else would Beth be able to go on campouts, she reasoned.
The two of us were parked near a campfire the one time I remember complaining to her about diabetes. "I want hot chocolate!" I was crying, and she scooted over in the front seat of the car to hug me. Somehow from the one-syllable words she uttered—"aw" and "Beth" and "oh"—I knew I wasn't wrong to feel sad.
Staying sad, however, would have been wrong by Flo's reckoning. Once I calmed down, she took a handkerchief out of her purse, wet it with her tongue, and cleaned off my face. We went to the campfire. I sang songs while the other girls drank hot chocolate and ate s'mores.
At school I was the only kid allowed to have candy in my desk, to remedy low blood sugar attacks. The school nurse kept orange juice in the refrigerator, my name printed with Magic Marker over the label. She kept urine strips there for me, too, although the container collected dust. I knew how to test my urine, knew I was supposed to do it four times a day, but rarely bothered. "It's gross," I thought, "and I feel fine, so why bother?"
I was nine years old before I gave myself an injection. For two years I'd been practicing with used syringes, drawing water out of a cup and sticking the needle into an orange, just to get the feel of it. I'd take my dolls out and give them shots, too. My eleven-year-old sister Beverle, closest to me in age and the one I fought with the most, sometimes joined me at the kitchen table during practice sessions. Playing with syringes remains one of the few things I remember the two of us enjoying together as children.
My mom never pressured me to take my own shot, but eventually I decided I wanted to. In fourth grade, when I was invited to my first slumber party, I knew I wouldn't be able to go unless I could inject myself in the morning. A week before the party, I could draw the insulin into the syringe, pinch up some skin on my thigh and rub it with an alcohol patch. I could bring the needle within inches of my leg and tighten my eyes shut. But I couldn't muster the nerve to stick that needle into my own leg.
Nine was too young for an overnight party anyway, my mom said, making me all the more determined.
Two days before the party, I finally did it. "Good girl!" my mom exclaimed, seeing me stick the needle in my thigh and push the plunger down. After watching me take the needle out again, she gave me a quick hug and ran to the kitchen to check on my poached eggs.
The delight gained from knowing I'd be sleeping over with friends that weekend far exceeded any satisfaction I might have derived from finally giving myself the shot.
But then I got to the slumber party. The girls crowded around me when it was time for my injection. "That's neat!" they said as they watched me draw insulin from a vial. A chorus of oohs, ahs and ouches came out when I stuck the needle in my thigh; when I withdrew it, the birthday girl said Wow, that was really brave. I bent the needle back and forth to break it off, then made the other girls jealous by awarding the used syringe to the birthday girl. She told me later that it was her favorite gift.
By the time I was eleven or twelve my diabetes was less of a novelty at home, and in junior high everyone was much too concerned with their own bodies to care much about me and my shots. The disease pretty much left me alone until high school. I was a late bloomer, and the changes of adolescence wrought havoc with my body chemistry. Add all the normal stuff like wanting to fit in and you have a recipe for disaster.
(Continues...)
Excerpted from Long Time, No Seeby BETH FINKE Copyright © 2003 by Board of Trustees of the University of Illinois. Excerpted by permission of UNIVERSITY OF ILLINOIS PRESS. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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