Kirez's story

My diagnosis
I was diagnosed with insulin-dependent diabetes mellitus in September of 1993, at the age of 20, in the first weeks of my sophomore year at Cornell University. Mine was a textbook diagnosis. For three or four weeks I'd been feeling very poorly, mostly including exhaustion, a feverish feeling with heat in my thighs, and my blood feeling "muddy", hot and thick, after meals.

I felt I was losing weight and very clearly losing strength and muscle. I had been an active athlete for five years, including running cross-country and track, wrestling, gymnastics, diving, swimming, and a variety of martial arts. I had an exceptional build, like a body builder's but still athletic: a narrow 30-inch waist and beefy 44-inch chest, big shoulders and ripped, muscular arms. In those first three to four weeks of the fall semester, my arms, shoulders and chest visibly shrank.

Some curious incidents in this pre-diagnosis stage included waking in the middle of the night, unable to sleep, with outrageous cravings for chocolate. I remember once waking at 3:00 with a craving so sharp, I began dressing and planning how I could find a store, open 24 hours, to buy chocolate. I lived in off-campus housing and without a car or bicycle, so I planned to walk more than a mile to a supermarket. I woke my girlfriend up, telling her my plan, and we both marveled at the insanity of it. She lived through and witnessed my symptoms during this period, and soon she was instrumental in my diagnosis.

This pre-diagnosis period also exactly coincided with my introduction to the internet, and my discovery of email discussion groups (and, incidentally, my meeting with Jimmy Wales (PBUH) by joining a discussion list he was managing.) I had been experiencing very blurry vision -- a well-known symptom caused by too much free glucose in the blood vessels in the retina due to hyperglycemia or high blood glucose. So I borrowed a pair of very strong magnifying goggles from my research lab, used for working with samples on microscope slides. I must have looked a bizarre sight, or merely visually handicapped, as I began having to use these goggles to read my email in the computer labs.

Other textbook symptoms: I was drinking water and thirsty constantly, and I was urinating constantly. At one point it seemed I had to urinate every 15 minutes. I had lost more than 15 pounds in a three week period, dropping from 177 to 160 lbs.

There was a clarion signal to me that something serious was wrong, when one morning I woke up, noticed how gaunt I'd become and how my arms especially had lost muscle, and I dropped to the floor to do push-ups. I did three push-ups and then fell on my face, unable to lift myself again. Just three months earlier, I had been able to do three sets of 100 repetitions each in a 15-minute period. That evening, I summarized all the strange symptoms I'd been experiencing to my girlfriend, as she spoke with her father, a radiologist, on the phone. His answer was decisive, unhesitant: Kirez has diabetes. I didn't even know what diabetes was.

The next morning I visited the student health center where they measured my blood glucose at 580, thus diagnosing me with Insulin Dependent Diabetes Melitus, and admitting me to the Ithaca County Hospital.

Hypoglycemic episodes
I believe that my experience of IDDM has been extraordinary, in a frightening and damaging way, which is why I want to share some of my personal story.

In my almost 14 years of being an insulin dependent diabetic, I have experienced the familiar rollercoaster, but with frequent and severe hypoglycemic episodes due to giving myself too much insulin. In my case, many of these have coincided with intense physical training, and a tendency to economize on my time -- attempting to squeeze meals and blood-sugar management into a fast and furious schedule that is constantly changing. I have almost no routines or consistency in my life, I have poor time management and organization skills, and I tend to overschedule myself.

This introduction feels understated to me: I have lived through periods including more than 15 severe hypoglycemic insulin shocks a week. The story of my diabetes is a story of how profoundly blood sugar can affect brain function, with frightful effects seen in personality, mood, memory, intelligence, judgment; in the more routinely medical account, including grand mal seizures, self-induced physical trauma, car accidents, countless periods of unconsciousness, amnesia, depression, and simple cognitive mistakes that have thrown unpredictable monkey wrenches into every facet of my life.

I would like to share some of these stories, and among the humor and the horror, to document how devastating extreme fluctuations in blood sugar can be to the human brain, and by implication, to all of one's life.

Fellow diabetics might marvel at me because I can report a most recent HbA1C of 4.8. And further, if they're familiar with my adventures: I've run more than 10 marathons, including a 50-mile ultramarathon; as a freediver I have regularly swum with sharks and in perilous reefs, can hold my breath for more than 4:30 minutes, can swim down to 40 meters. I've been a SCUBA diver, a polo player, a sky diver, a rock climber. Most impressively, I believe, I have hitchhiked across the Asian continent, covering the Russian Federation twice from Europe to the Pacific Ocean, and through northern China -- all on a budget of less than $10 per day, wearing an insulin pump, running out of supplies including glucometer test strips and pump infusion sets, adapting to new methods, medications and instruments, sometimes surviving through days of hiking without food or rest.

And in the process, of course, experiencing hypoglycemia in which I forget who or where I am, or -- an example of a horrifying story I can tell -- paranoid delusions that the FSB (formerly KGB) who had just been interrogating me, are now following me and staging me in an artificial world. In this episode I openly, ostentatiously, committed several crimes in the midst of a busy crowd in public because I believed the crowd consisted of acting FSB agents who were surveilling me.