“Regulated,” and Other Smart Words.
Jeff’s story.
My first insulin reaction is one that I will always remember. Not because of the severity (it was quite mild,) but because of the strange familiarity. One afternoon in the late summer of 1982, I was showing my father’s 1938 Cadillac restoration project to my friend Bruce, and began to get a queasy, nervous feeling across my chest. There was no blurred vision, confusion, sweating, or garbled speech -- only an uneasy, shaky sensation in my upper torso.
Without interrupting the conversation, I reached into the left front pocket of my blue Dickies work pants and pulled ou
t a large ring of keys and my pocket knife. Then I dug deeper for the roll of LifeSavers that a nurse had forewarned me to keep handy. Opening the roll was a challenge -- not because of the hypoglycemia, but because the paper sleeve and foil wrapper had been burnished from the hours they spent in my pocket competing for space with all that hardware, and I could not get my fingernail under that little red string. Snapping it in two, I quickly munched down half the roll. No paramedics needed, just some butterscotch candies. The queasy feeling in my chest went away.
That feeling, though, was familiar, reminding me of how I had often felt as a kid on Thanksgiving afternoon while playing ball out in the yard after the big dinner. It was a sensation that told me instinctively that I needed to eat something, right now.
For me, diabetes began in the summer of 1982, when I was 23 years old. But long before that, when I was a healthy kid, our extended family would converge on our house in a pleasant, rural Rhode Island town for Thanksgiving dinner and the annual “cousins vs. cousins” games that followed.
We all stuffed ourselves silly, fooling our healthy pancreases into churning out more than enough insulin to handle the cranberry chutney, glazed carrots, squash pie, and everything in between. Twelve-year-olds do not see the point of taking a moment to digest before running around like a pack of greyhounds; everyone knows that. So at the end of the meal, we dropped our forks and chose teams faster than you can say, “hyperinsulinemia.” We worked off our meals on a makeshift gridiron, basketball court, or street hockey rink, and I invariably felt the effects of what I later learned was low blood sugar.
My diagnosis came on the sunny morning of July 27, 1982. I think it was a Tuesday when Dr. MacDonald listened to me explain my symptoms: a sudden drop in weight from 170 pounds to 142, urinating so frequently that I could barely survive the 45 minute rides to and from work, and the insatiable thirst that had me guzzling Coke, and then Gatorade, blessed, thirst-quenching Gatorade, by the liter bottle at all times of the day. His exact words were, “I’d say you’re diabetic.” My education on the subject started right away when I told him that my vision was also going in and out of focus all day long, and that everything seemed to have a peculiar, vile smell. He said that when your sugar is out of control, “All the shit goes out the window.” One needn’t have attended medical school to understand the good doctor.
So I was off to St. Anne’s Hospital for blood work, forthwith. Later that afternoon, the nurse called me with the news that my blood sugar of 812mg/dl had earned me an invitation for an extended stay at St. Anne’s. My last act as a “healthy” man in his early twenties was to take a seat on the patio and slurp down a cool and delicious pinã colada lovingly prepared by my renegade sister, Nancy. She rationalized, “What’s a couple of hundred more sugary milligrams when you’re already pushing a thousand?” We laughed, albeit nervously, knowing that things were about to change for me in a big way, and in a big hurry.
At the hospital, after some prerequisite admission forms were filled out, I was given my choice of a private or a shared room. I opted to be by myself. Not long after I had made myself comfortable in room 204, some nurses showed up to introduce themselves, followed by a very heavy dietician. Perhaps I was not the first to note a degree of irony in that the dietician looked as if she could use a dietician, but all of the professionals with whom I had contact were very caring, comforting, and knowledgeable.
One of the nurses scribbled a few notations on my chart and then suggested that I try to learn as much as I could about diabetes. She also asked me if I would like to meet another newly diagnosed diabetic who was on the same floor. A few minutes later, a pleasant young lady tapped on my open door. About my age, she introduced herself and told me that several members of her family had been diagnosed as insulin dependent at early ages. Her own diagnosis was entirely expected, and she had been spending most of her time in the hospital trying to get herself “regulated.” (I thought, “New word: ‘regulated.’ I’ll have to remember it so I can sound smart.”) When I asked how long she had been in the hospital, she said, “Three weeks, now.”
Three weeks?!?! It was my first day. The utter impossibility of being anywhere for three straight weeks without Schlitz hit me like a bucket of ice water. Not me. Not no way. Not no how. A nurse popped in to summon my new friend back to her room for blood work. It turned out to be the last time I ever saw her. But, with the specter of a three week sentence staring me right in the islets, I called for a nurse and asked her to round up as much literature as possible on diabetes. Before long, I was chewing through a small mountain of booklets, pamphlets, and food exchange guides. In the span of a single conversation, it had become my mission to self-educate my way out of there at the earliest possible minute. Food exchanges, remember those?
When another nurse returned with my latest blood sugar test result, Dr. MacDonald had given the go ahead to set me up with my first insulin fix. In 1982, the hospital was not equipped with Glucometers for in-room testing. Blood had to be drawn and sent downstairs to the lab. The samples would then be put into a queue with all the other tests the lab was doing for every other patient in the building. Of course, while waiting for the lab to get around to my blood, I had the distinct advantage of being introduced to something called, “test tape.” My eyes well up at the memory. Not.
Until then, the most productive thing I had ever done with my pee involved a little cursive snow-writing. Now I was being told to take careful aim at the tail end of some flimsy tape, time it like a high school track coach with a stopwatch, compare shades of yellow and green (apologies to you Beatles fans) against a chart with my still blurry vision, and all the while maintain a respectable level of bathroom hygiene. No problem.
It was not long before I pitched that roll of tape straight into the circular file. At that point in my diabetic career, all it ever did was turn raven black from all those ketones. And what good was something that told me what was going on hours ago, anyway?
My hell-raising sister showed up at the hospital for a visit on day two. With my parents already there, she waltzed in, wearing an impish grin, carrying a bag from some local news stand. Always at the top of her class in school, it was a documented fact that she was up to no good whenever she put on an air of dumbness. “I brung you somethin’,” she said, using a vernacular reserved exclusively for those times when her special brand of trouble was about to commence. She reached into the bag and pulled out three magazines: Playboy, Penthouse, and one other uncouth also-ran of the genre. “Thought you’d like some readin.’” She held one up in the air like the Statue of Liberty and allowed Miss July to unfurl for all the world to see. I have never done well at such moments in my folks’ presence, and that sister of mine knew it. I’m closing in on fifty years of age now, and it is still unthinkable to me that I could ever be in the same room with both (a) my parents, and (b) a TV playing a scene from the Bada Bing. Through the years, Nancy had honed her ability to generate a good laugh, usually at the cost of my own embarrassment.
My paternal grandparents separated long before I was born, but each of them came to visit me at different times on the second floor of St. Anne’s Hospital during my four day diabetic boot camp. Grandpa stayed for a little while and then paid for my in-room TV access, which was only about $3.00 per day, but his thoughtful gesture meant a lot to me.
My grandmother lived alone in the city, and because of the poor quality of the municipal tap water, it was always my father’s habit to bring her a fresh supply of drinking water every week from his artesian well at home. The water in our little Rhode Island town on the Sakonnet River was, without question, the finest anywhere. Dad would bring it to her in plastic gallon jugs, two or three at a time.
Grandma never drove a car. Wherever she went, she walked or took the bus. It was not unusual for her to walk a mile or more, depending on what grocery store she wanted to visit, and then hoof it all the way back to her apartment with full grocery bags. Once, nearing eighty years of age, she was struck by a car in the parking lot of one of those grocery stores, and sustained nasty compound fractures in her arm, plus all the cuts and bruises that go along with such accidents.
God had made her self-sufficient long before she reached Ellis Island, and she trusted that He would continue to hear and answer her prayers each day. Healing patiently, she gradually worked her way back into the routine of using her legs, and a rebuilt hip, to get from point A to point B. There were times that I could see she was in obvious pain, but she never put her problems on anyone else’s shoulders. She’d just look at me with her genuine, loving smile and say, “Old age creeping.” Celestina came from hearty stock.
So it was not at all surprising that grandma would trudge across the city to see one of her grandsons in the hospital. But, knowing firsthand of the city’s horrendous drinking water, she made the trek carrying a full gallon of the water my dad had brought to her that week, just so I would have something decent to drink in my room. She gave of her own limited supply so that I would not be without. Always, there was a lesson to be gleaned from that woman – of selflessness and faith.
One thing that confused me during diabetic basic training was whether or not I was supposed to get up and walk around. No one had told me that I should exercise, but I was reading that exercise is an integral part of diabetes management. What was this scrawny new pin cushion to do? I suppose I should have asked the doctor if I could at least walk the halls, but with all the deciliters and milligrams and beef/pork this and subcutaneous that, it slipped my mind. And the nurses would not commit to anything that the doctor had not pre-approved. So there I sat, making full use of every last nickel of my grandfather’s TV money.
But I had to crank the sound of the television to hear it. The hospital seemed to have waited for me to show up before it started the work on a new wing. Each day, a brawny old guy with monochromatic green prison tattoos, half a week’s worth of stubble, and no sleeves became my personal alarm clock. Taking up his position at 7:00am -- seemingly right outside room 204 -- he announced each new day by pressing the thumb switch on a portable, 70 pound, pneumatic compressor-driven jack hammer that ran at 1340 cycles per minute, and had a grease-packed gearbox, two-way tool holder, recoilless air-cushioned percussion system, and a 35 ft/lbs stroke impact rating. In four days, I gained an unwanted, involuntary familiarity with that $%@!!*&@?^#% tool that I could only hope to get with my new disease. Its anthem of 110 unsuppressed decibels of non-stop demolition further hardened my obsession with being discharged at the first possible instant.
When that joyous event arrived, the hospital asked that, before leaving, I account for the non-insurance-covered portion of the private room. It was either pay up, or go back to 204 and more of Stubbles and his wrecking machine. I wrote the check. My cost was $63.80. That’s correct, a private hospital room cost me $15.95 per day over the insurance allowance. I saved the receipt.
Since my diagnosis in 1982, therapy for diabetics has advanced from test tape to Glucometers with wash bottles, from A1c home tests to CGMS, from bread, fruit, and fat exchanges to carb counting, correction boluses, and temporary basal rates. And just like my original dx, each new breakthrough takes some getting used to. I once figured out that I had given myself about 27,000 shots, but now, having been on a pump since 1998, I cannot remember the last injection I took. The learning curve for the pump was pretty demanding, and I suspect the same will be said for future technological advancements. Still, I await them eagerly.
But something that I wish had not changed over the years is my symptoms of impending low blood sugar. How I yearn for that good old, dependable, queasy feeling across my chest. Like a two-minute warning, it gave me time to assess my situation and to break out the LifeSavers or chug down some OJ. Today, that warning is gone, and my only symptom of an oncoming low is incessant yawning. I become very weary, but by then it is usually too late. My lowest test without any 
hypoglycemic symptoms was 22mg/dl. One might construe that I am on a journey to become the first fully conscious human being with sugar-free blood. Hopefully, I will latch on to a continuous monitoring system before that happens.
So here it is, just a few weeks shy of 25 years later, and I am finally getting around to jotting down some thoughts on my initial experiences with diabetes. There are a lot more stories to write about from the intervening two and a half decades, like My Two Nancy’s, Fifty Things I Want To Do Before I Die, “Drinkin’ Days,” and Why I Save The Rubber O-Rings From My Reservoirs. And I am inclined to continue, but this is where it will have to stop for today. It was fun reminiscing, and all it took was an invitation from another Rhode Islander with a first class blog. Maybe I’ll have one of my own before too long.
