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.
Posted on February 13, 2013, in Diabetes, Personal, Type 1. Bookmark the permalink. 9 Comments.
THIS was AWESOME!
Although not memories children should have, it was very enlightening to read. I love that you included the images of the doctors handwriting. Looks like they didn’t teach illegibility until much later years. 😛
Sounds like you took it well and with a bit of humour 🙂
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Thanks Scully! Actually, those images were recycled from an earlier post about when I asked the hospital for — and received — my medical records at diagnosis. You can see that post by clicking “medical records” in the first paragraph.
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I don’t want to sound cheesy, but I’m going to say it anyway… You’re wrong about not beating diabetes. You’re beating diabetes every day. 🙂
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I’m staying in the race, Bethany, but I’m not quite beating it. We’re kind of neck-in-neck; Sometimes it takes the lead, sometimes I do, but I do what I can not to fall too far behind.
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I really enjoyed reading this, and how the memories are, like you said, not all diabetes focused.
I totally pictured you cheesing away while playing with the bed and remote controlled TV. Haha!
And Candi? Priceless.
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I can’t tell you how hard I laughed after reading your comment. Thanks Scott!
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Is it weird that a few weeks ago I started jotting down notes about my own diagnosis? These memories come up in random conversations but I thought I should jot them down while I remember them. Midlife crisis? Well at least I’ll stay busy with my notes! Our stories are so similar sometimes, it amazes me. Ahhh chicken pox and movable beds! Great post Scott!
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Well, I’ll be looking forward to your post about your memories from back in the day! (Watch it when you say ‘midlife crisis’; we’re close to the same age and I’m not ready to be halfway done yet)
So your story is like mine — did you get a sponge-bath from Erik Estrada?
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It looks like you and I were diagnosed the same year. I’m a little older, though. I was 13, and thus dealing both with entering junior high and also preparing for my Bar Mitzvah.
I remember the drinking and the peeing, though we didn’t understand that it was the peeing first and then the drinking. My parents had only recently divorced, and my father told my mother he thought that I was breathing through my mouth too much, drying out my mouth and thus needed to drink more.
I lost a lot of weight, I began to look haggard. I had no energy. My friends and I rode to school on our bikes, a few miles. It was all downhill there…and all uphill back. I remember one day riding home, struggling, getting the bike into the garage, going inside and climbing up the stairs on my hands and knees, and only making it halfway. My mother found me asleep on the staircase.
The last straw was when we went to my family’s favorite place, Joe’s in San Rafael, and instead of a Joe’s Special (eggs, spinach, ground beef, onions and mushrooms) I ordered…a salad. I craved liquid so much. That’s when we finally went to the doctor. I remember my doctor coming into the examination room and asking me what I knew about diabetes. In typical teenager fashion, my response was “Does that mean more shots?” “Oh, it means a shot a day for the rest of your life.”
At that time I was very insulin-sensitive, and the first night in the hospital I dropped from 800 to 65: my very first insulin reaction. I had enough wits about me, though, to try to talk the technician out of testing my blood. I don’t remember how long I was in the hospital, but I do remember my dad driving across the Bay for the first night, and going white as the doctor explained things. “Going white” is just an expression, except it isn’t…it was the first and only time I literally saw someone go white.
I remember the other stuff, too: 45 degree angle, pull back on the plunger. I practiced with a sponge ball and saline solution. But I had trouble getting up the guts to do the deed on myself. The hospital staff ended up bribing me with a cheeseburger. It worked.
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