Monday, October 8, 2012

21 Years: Memories

I remember my diagnosis, vaguely. Wisps of memories, like a dream, that have merged and shifted so much over time I'm no longer sure what's real and what's just made up from bits and pieces my parents have told me.

Before diagnosis, I remember only the thirst. Truly unquenchable, it was all I could think about. It crept into my thoughts at home, at school, in sleep. I read problems in my math textbook about selling jugs and milk and all I could think of was how much I wanted a glass of milk. At friend's houses, a denial of liquid from their parents felt like a denial of air, ensuring I'd spend the remainder of the afternoon wishing my mom would come so I could go home and get water. At night I awoke multiple times to make my way to the bathroom, moving as quietly as possible through the darkened house, scared I'd wake my parents. I'd use the toilet and, after washing my hands, would keep the water running and stand on my tiptoes, craning my neck until I could catch the stream of water in my mouth. I'd drink and drink until my stomach felt like it couldn't hold any more, and then creep back to bed for another few hours.

For an adult, the thirst prior to diagnosis is inconvenient. For a child, who doesn't have independent access to water, it feels almost like torture. Of course, from my parents' perspective I was drinking plenty. Too much, in fact. Sitting down to dinner and drinking four glasses of water! But from my perspective, it was never enough.

Diagnosis came unexpectedly. One morning I was in school, and by that afternoon I was in the hospital. It wasn't a crisis, though. My mother took me to the doctor because she had noticed how much I was drinking, and that I had lost weight and seemed tired. I remember the doctor mentioning diabetes. It was the first time in my life I'd ever heard the word. I asked my mom what would happen if that's what I had, and she answered that it just meant I wouldn't be able to eat much sugar from then on. Neither of us had any idea what was in store.

I don't remember the trip to the lab to draw blood, or the trip home to pack. I do remember my mom filling a giant black-and-white water bottle of water and giving it to me, telling me I could drink as much as I wanted. It felt like a huge relief, that someone finally knew how constantly thirsty I was. I don't remember going to emergency or much of what happened there, except that they kept me there for hours. I remember riding upstairs in a wheelchair covered with a blanket. I remember begging for food because they wouldn't let me eat for hours.

I remember eating breakfast when it arrived the next morning, only to be reproached by the nurse. "From now on, you can never eat until you've had a shot." I don't remember my first insulin injection. I do remember oranges and syringes, vaguely. I remember my mother testing her blood sugar and thinking it was low when the meter counted down 3-2-1 before showing the result (except in those days the countdown started at 45, not 5). I remember having to check ketones and blood sugar every time I used the toilet. I remember nurses waking me up in the middle of the night to check vital signs. I remember classmates coming to visit and get-well cards and balloons, and books. I spent a majority of my four-day hospital stay reading and drawing.

In a way, I wish I could remember more of my diagnosis. I don't have any idea what my blood sugar level was. I don't even know the exact date for sure, except that I do have my first logbook. It starts on October 11, which I peg as the day I got out of the hospital (it starts at dinner), and since I know I was in the hospital for four days, I figure October 8 is my diagnosis date.

It's been 21 years now. I've lived over two-thirds of my life with this disease. That many years is a long time ... a lot of blood tests, a lot of shots, a lot of highs and lows. A lot has changed over those two decades. Meters are smaller and faster and require less blood. Carbohydrate counting is the norm. Most people use insulin analogues that didn't exist back then. Pumps are much, much more common. Continuous glucose monitors are beginning to take off.

Some things haven't changed. Diabetes is still hard. It still demands attention all day, every day, all year. There is still no such thing as a vacation. There are still highs and lows. There is still the threat of complications lurking in the future. There is still the fear of going low and not waking up one morning.

How can anyone do this forever? I used to ask myself that. I used to think of all the years I'd have to manage diabetes—more than 50 years still ahead, if I live into my 80s—and wonder how anyone could possibly continue this non-stop, forever.

But then I look back at the past 21 years, the beginning of which I can barely remember, and realize how long a period that is. That is a long time. And somehow, I've made it. And not only made it, but gotten through unscathed, free of any known complications. Twenty-one years ago I could never have imagined myself here, today, having managed diabetes for so long. It would have been too overwhelming, even if I had been old enough to care.

If there is one thing I have learned over the years, and especially this past year, it's that the only way to manage this disease and not go insane is to take it one test at a time. Not even one day at a time, but one test. You can only focus on one decision at a time, otherwise it gets too overwhelming.

I am hopeful that over the next 20 years they might find a cure ... but I'm not holding my breath. I think the closest we'll get to a cure in my lifetime is a technological one—something like the artificial pancreas. If they do find a cure, great. But I've prepared myself for the likelihood that they won't.

In the meantime I continue to do the best I can each day, one test and one decision at a time.

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