Diabetes: My earliest memories
This is how I remember the time of my diagnosis. To a seven year old, memory is selective, and most of what I selected to remember – surprisingly – does not involve diabetes (family members and medical records filled in what I missed later). To a 38 (almost 39) year-old, memory gets hazy, so this is my attempt to write down my diagnosis memoirs before I forget anymore.
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I had been home from school for quite some time. I’d been itching like crazy from the chicken pox. My parents would slather cream on my sores like one would schmear cream cheese on a bagel.
They brought my brother to the doctor who gave him some a shot to give him chicken pox as well, but in a much more mild outbreak. At four and a half years old, he hadn’t yet been given the diagnosis of Angelman Syndrome, but there was definitely something wrong with his brain, his motor skills, and his development. Everyone knew that – if he got it as severe as I did – that it would be worse than unbearable. So in the absence of a vaccine (which, apparently, they now have these days – medical breakthroughs do exist!), they gave him this. He seemed to do alright from what I remember.
The defining moment for me was one day with my mother at the Englishtown Auction. It’s not really an auction (I assume it once was), but rather a large outdoor flea market: rows upon rows of rickety wooden tables set up on the hard, dry dirt where merchants would sell their wares. Most of it was junk, some new and some used. My mom, always the type to look for a diamond in the rough, loved that place. It’s one of the childhood memories that left a vivid picture in my mind, from the tiny pedestrian footbridge to the guy in the corner selling hubcaps. It is so not New Jersey, but that’s where it was (and still is!).
Anyway, this particular day in 1981 must have been particularly hot, because I was particularly thirsty (the guy selling drinks from the food-truck must’ve made a killing that day). And naturally, that led me to need to use the bathroom. This cycle repeated itself throughout the day, until my mother grew increasingly frustrated and told me to just pee in my pants.
The days when I had a problem with bedwetting were in the past – but not so far in the past that I didn’t remember how uncomfortable and how shameful it was. I sure didn’t want to go back to that time, so I refused. Mom told me something was wrong and she was taking me to the doctor. I saw nothing wrong — it’s hot so I’m thirsty; I’m drinking so I need the bathroom. It seemed perfectly normal to me, what’s the problem? I didn’t want – or need – to go see the doctor, but, somehow, my trademark squeaky voice went unheard.
[This is where my mother would interject and say I was also losing weight, losing energy, and just not “looking right”. I don’t remember that part.]
I don’t know if it was that day or the next day, but I ended up going to see the pediatrician, Dr. G. He knew me well, as I was one of his first patients after he finished med school. In fact, I was the one who taught him – about seven years earlier – not to wear a nice suit-and-tie to work. If you do, a baby (me) will pee all over it.
Anyway, Dr. G had an ambulance come and take me to St. Peter’s, the closest hospital. I didn’t know why, but it was my first time in an ambulance – siren blaring and running red lights – and it was pretty cool.
I ended up with my own room in an adult-wing at the hospital, because all the rooms in the pediatric ward had two or three beds and, with my chicken pox, I was deemed too contagious to be around them (years later, I wonder why I was “healthy” enough to go to Englishtown, but I digress). The nurses on that floor all loved me. They were used to dealing with cranky old geezers, and here comes an adorable blonde-haired seven year old boy (covered in pock-marks) to brighten their day.
I even got a sponge-bath from a nurse named Candi. It would be ten years (age 17) before I realized what a missed-opportunity that was, and thirty years before I realized the irony of the nurse’s name considering the reason I was there. But she was really nice.
The hospital room had a TV with a (wired) remote control. We didn’t have a remote control on our TV back home, so I thought that was the second-coolest thing there. The coolest thing was the bed and all the buttons that made it move. Head goes up, head goes down. Feet go up, feet go down. I played with those buttons so much that I broke it. Then they brought me one of those “old-fashioned” reclining beds that only a hand-crank at the foot of it, which naturally I couldn’t reach. Now I only had the one-button remote control to play with. (Press the button, the channel goes up. After the last channel, it turns off. Press again, it goes back on at Channel 2).
I was brought a menu each day where I could choose what I wanted for breakfast, lunch, and dinner. Having those choices was nice, but I quickly learned how awful hospital food was, and I rarely finished it. Or maybe I didn’t finish because my blood sugar was really high. I’m not sure. I’m not even sure how often they checked my blood sugar at all — I remember trying to match the color on the Chemstrip to the color blocks on the side of the vial, but I remember peeing in a cup a lot more. I do know that I checked my blood sugar once a day when I got home. Once daily insulin-injections too (that quickly doubled, even before the honeymoon).
I remember my parents taking turns sticking a syringe in an orange. I remember the instructions, when putting a syringe in me, to “draw back for blood”. Back then, before injecting the contents of the syringe, you were supposed to pull the plunger out a bit to check for blood — to make sure you didn’t hit a vein. At some point years later, they determined that destroys body tissue, and that step was dropped. My parents were also instructed to put the needle in “at a 45-degree angle”, another step since dropped. That was my first exposure to angles, degrees, and geometry. Maybe it’s partly why I’m so good at math today.
My father told me that I’d probably have to take shots for the rest of my life. In some cases diabetes could go away – but it’s extremely rare and probably wouldn’t happen to me, so not to get my hopes up. But before that day, I’d been taught that if I concentrate and try really hard, that I could do anything, and I was convinced that I could do this. I was determined that I could beat diabetes. I guess I was wrong on that one.
One day (it seems like I was there for a lot of days) my parents brought a stack of cards that my first-grade classmates made from construction paper and crayons. They had messages like “Get well soon” and “I hope your chicken-pox goes away”. If there were any references to diabetes on the cards, I don’t remember them. Not too long ago, I asked my parents if they still had them. They didn’t. Too bad, because I’d like to see what the other seven-year-olds were thinking of the whole thing.
Eventually, I was deemed well enough to move out of adult-wing quarantine and join some other kids in the pediatric ward. I shared a room with a kid whose brother ran over his foot with a lawnmower. He was quite chatty and outgoing, and I was shy. I much preferred having my own room upstairs; even the nurses seemed nicer up there. But we made the best of it. We played Monopoly together. I didn’t stay there long before my stay was over.
Finally, it was time to go home. On my first day back, I remember eagerly anticipating my daily blood-sugar test, checking the clock every few minutes to see if it was “time”. The thought of doing something that should only be done in a doctors’ office, but this time in my own living room, seemed edgy and rebellious. But in the end, anticlimactic and disappointing.