My Life with Diabetes
WELL BEYOND A HALF CENTURY AND COUNTING
I do not know of many diabetics who developed the illness around the
time I did, in 1946, who are still alive. I know of none who do not
suffer from active complications. The reality is, had I not taken charge
of my diabetes, it’s very unlikely that I’d be alive and active today.
Many myths surround diet and diabetes, and much of what is still considered
by the average physician to be sensible nutritional advice for diabetics
can, over the long run, be fatal.
I know, because conventional “wisdom” about diabetes almost killed
me.
I developed diabetes in 1946 at the age of twelve, and for more than
two decades I was an “ordinary” diabetic, dutifully following doctor’s
orders and leading the most normal life I could, given the limitations
of my disease.
Over the years, the complications from my diabetes became worse and
worse, and like many diabetics in similar circumstances, I faced a very
early death. I was still alive, but the quality of my life wasn’t particularly
good. I have what is known as type 1, or insulin-dependent, diabetes,
which usually begins in childhood (it’s also called juvenileonset diabetes).
Type 1 diabetics must take daily insulin injections just
to stay alive.
Back in the 1940s, which were very much still the “dark ages” of diabetes
treatment, I had to sterilize my needles and glass syringes by boiling
them every day, and sharpen my needles with an abrasive stone. I used
a test tube and an alcohol lamp (flame) to test my urine for sugar.
Many of the tools the diabetic can take for granted today
were scarcely dreamed of back then — there was no such thing as a rapid,
finger-stick blood sugar–measuring device, nor disposable insulin syringes.
Still, even today, parents of type 1 diabetics have to live with the
same fear my parents lived with—that something could go disastrously
wrong and they could try to wake up their child and discover him comatose,
or worse. For any parent of a type 1 diabetic, this has been a real
and constant possibility.
Because of my chronically elevated blood sugar levels, and the inability
to control them, my growth was stunted, as it is for many juvenile-onset
diabetics even to this day.
Back then, the medical community had just learned about the relationship
between high blood cholesterol and vascular (blood vessel and heart)
disease. It was then widely believed that the cause of high blood cholesterol
was consumption of large amounts of fat. Since many diabetics, even
children, have high cholesterol levels, physicians were beginning to
assume that the vascular complications of diabetes—heart disease, kidney
failure, blindness, et cetera—were caused by the fat that diabetics
were eating. As a result, I was put on a low-fat, high-carbohydrate
diet (45 percent of calories were to be carbohydrates) before such diets
were advocated by the American Diabetes Association or the American
Heart Association. Because carbohydrate raises blood sugar, I had to
compensate with very large doses of insulin, which I injected with a
10 cc “horse” syringe. These
injections were slow and painful, and eventually they destroyed all
the fatty tissue under the skin of my thighs. In spite of the low-fat
diet, my blood cholesterol became very high. I developed visible signs
of this state—fatty growths on my eyelids and gray deposits around the
iris of each eye.
During my twenties and thirties, the prime of life for most people,
many of my body’s systems began to deteriorate. I had excruciatingly
painful kidney stones, a stone in a salivary duct, “frozen” shoulders,
a progressive deformity of my feet with impaired sensation, and more.
I would point these out to my diabetologist (who was then president
of the American Diabetes Association), but I was inevitably told, “Don’t
worry, it has nothing to do with your diabetes. You’re doing fine.”
But I wasn’t doing fine. I now know that most of these problems are
commonplace among those whose diabetes is poorly controlled, but then
I was forced to accept my condition as “normal.”
By this time I was married. I had gone to college and trained as an
engineer. I had small children, and even though I was not much more
than a kid myself, I felt like an old man. I had lost the hair on the
lower parts of my legs, a sign that I had developed peripheral vascular
disease—a complication of diabetes that can eventually lead to amputation.
During a routine exercise stress test, I was diagnosed with cardiomyopathy,
which is a replacement of muscle tissue in the heart with fibrous (scar)
tissue—a common cause of heart failure and
death among those with type 1 diabetes.
Even though I was “doing fine,” I suffered a host of other complications.
My vision deteriorated: I suffered night blindness, microaneurysms (ballooning
of the blood vessels in my eyes), macular edema (swelling of the central
portion of my retinas), and early cataracts. Just lying in bed caused
pain in my thighs, due to a common but rarely diagnosed and barely pronounceable
diabetic complication called iliotibial band/tensor fascialata syndrome.
Putting on a T-shirt was agonizing
because of my frozen shoulders.
I had begun testing my urine for protein and found substantial amounts
of it, a sign, I had read, of advanced kidney disease. In those days—the
middle and late 1960s—the life expectancy of a type 1 diabetic with
proteinuria was five years. Back in engineering school, a classmate
had told me how his nondiabetic sister had died of kidney disease. Before
her death she had ballooned with retained water, and after I discovered
my own proteinuria, I began to have nightmares of blowing up like a
balloon.
By 1967 I had these and other diabetic complications and clearly appeared
chronically ill and prematurely aged. I had three small children, the
oldest only six years old, and with good reason was certain I wouldn’t
live to see them grown.
At my father’s suggestion, I started working out daily at a local gym.
He thought that if I were to engage in vigorous exercise, I might feel
better. Perhaps exercise would help my body help itself. I did feel
slightly less depressed about my condition—at least I felt I was doing
something—but I couldn’t build muscles or get much stronger.
After two years of pumping iron, I remained a 115-pound weakling, no
matter how strenuously I worked out. It was at about this time, in 1969,
that my wife, a physician, pointed out to me that I had spent much of
my life going into, experiencing, or recovering from hypoglycemia, which
is a state of excessively low blood sugar. It was usually accompanied
by fatigue and headaches, and was caused by the unpredictable action
of the large doses of insulin I was taking to cover my high-carbohydrate
diet. During such episodes, I became confused and unruly and snapped
at people. These frequent hypoglycemic episodes had taken their toll
upon my parents, and were taking their toll upon my wife and children.
The strain on my family was clearly becoming
untenable.
Suddenly, in October of 1969,my life turned around.
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