Diabetes: The Next Generation

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Adam with Glucometer

When I was twelve, a friend of our mother’s came to pick my sister and me up from school during lunch.  She explained that Jonathan, our 18-month-old brother, was in the hospital, and that he would be fine, and that our parents would explain everything when we saw them after dinner that night.  We spent several nervous hours doing fractions and watching Star Trek: The Next Generation with their family, until our parents finally arrived.

“Jonathan has diabetes,” my mother explained.  “His body can’t process sugar.  He’s going to be fine, but he’ll need to take shots several times a day, and you’re both going to learn to help us test his blood.   And you can’t ever give him anything to eat or drink without asking.  He can’t have any sugar, ever.”

My sister and I were horrified.  Shots?  Multiple shots?  And something about blood?  And no sugar, ever?  Clearly, this was a fate worse than death.

This was 1993.  Jonathan’s first blood sugar readers were roughly the size of a Gameboy and devoured AA-batteries.  We pricked his 18-month-old fingers with a spring-loaded needle gun, and milked his blood onto coded strips.  Only 18-months old, he couldn’t do much more than cry.  Which he did.  All the time.  But I remembered thinking that, at least, getting diabetes so young, he’d never really know what he was missing.  For him, life would always have been like this.

Our family, on the other hand, had big adjustments to make.  Once frequent hikers and campers, we stopped spending nights out in the wilderness around the campfire – for if Jonathan exercised too much, or ate something he shouldn’t, we’d be hours from medical assistance.

Everywhere that we went, we had to bring not only the Gameboy and huge pack of batteries, but also a cooler.  This held extra fruit and cookies, but its real purpose was to transport two little glass vials of insulin, which had to be kept cold at all times.  These vials were sealed with a vacuum, so for every dose of insulin removed an equal amount of air would be put back in.  The syringes were tiny and the numbers hard to read, and air bubbles got trapped inside and needed to be flicked out.  Jonathan’s dinnertime shots became quite a production.  Nosy patrons at the Broadway Diner would wonder loudly why my seemingly-pleasant suburban parents appeared to be shooting their young son up with drugs in public.

Kris&Jonathan1
Kris & Jonathan

The cooler became not-so-affectionately-known as “the kit.”   As in:  “Where the hell is the kit?  Did you remember the kit?  Guys, is the kit in the back seat?  Dennis, call the restaurant.  I can’t find the damn kit.”  Our new inanimate sibling, the kit, came with us everywhere: to Dairy Queen, where Jonathan could only have the Sugar-Free Orange Creamsicles; to restaurants where one of us had to taste every Diet Coke, every time, because the waiters could not be trusted; to grandparents’ houses in Buffalo and Florida on holidays; and on educational vacations to Colonial Williamsburg, the Franklin Institute, and the Amish Country in the summertime.  Airport security pored through the kit every time, scanning it with X-rays, and arguing as my mother explained that Juvenile Diabetes was a little different than what their aging fathers-in-law had – and that it could not be controlled by diet alone.

The doctors at the hospital constantly criticized my parents for improperly filling out the little log book with all the numbers that the Gameboy spit out.  Then they’d cheerfully tell us that Jonathan would be much healthier without so much sugar – and that science was making great progress on a cure.  Surely by the time he was all grown up, diabetes would be a thing of the past.

Today, Jonathan is 18 and no cure has materialized.  Just about everything about having Type I diabetes, however, has gotten easier as Jonathan has grown up.  Technology has developed over 16 years and that first bulky Gameboy has shrunken steadily, and gotten faster.  His new readers need less blood than ever to do a reading, and run off of lithium batteries that barely ever need replacing.

His home blood sugar reader now is about the size of a Blackberry, and it keeps a log automatically.  It tracks everything from his glucose-by-meal to the insulin he injects.  It has timers and alarms to keep him from forgetting to test himself.  He also has a second, even tinier, reader that he takes to school every day – so small that it fits in his pocket.  Before he goes to visit the doctor, he downloads the data from both devices onto his iPhone, which has an application that merges the data together and puts it onto a graph.

Diabetes?  Yeah, there’s an app for that.  Actually, there are twelve.

Healthy eating has also become much easier.  Low-carb and sugar-free options have become almost universally available, thanks to an influx of Atkins and South Beach dieters.  These diet crazes also helped illuminate the link between carbohydrates and sugar, and now he knows to keep his blood sugar numbers in check by regulating both.  And, of course, the iPhone also has dieting apps that list the carbohydrate/sugar content of everything he could ever want to eat – including popular menu items at restaurant chains worldwide.  Thanks to all these changes, Jonathan can now estimate within a few grams, his exact glucose intake, and adjust his insulin accordingly.

But it gets even better.  In our brave new millennia, gone too are the refrigerated glass vials and sketchy syringes.  His new “FlexPens” do not need to be kept cold, and have far more accurate dials to regulate the exact amount of insulin that he takes.  He still has a kit, but it is small enough to fit in his pants pocket, and this has completely un-tethered our family.  Not longer do we constantly seek hotel rooms with refrigerated minibars and endure the questioning of airport security.  Now we’ve begun going on family sailing trips, able to stay off-shore for days, without worrying about MEDEVAC helicopters.

And, wherever we travel, Jonathan asks for his new favorite drink: a (virgin) Strawberry Daiquiri.  Yes.  Today, his sentence for life-without-sugar has been pardoned.

Because the old syringe-and-air-bubble system was so inaccurate, we wanted to avoid any unnecessary insulin shots.  But today, able to precisely calculate carbs and sugar, Jonathan can easily and precisely counter the Daiquiris with insulin from his FlexPens.  Today, his favorite restaurant is a Beni-Hana style Japanese restaurant where food-flipping chefs drown shrimp in teriyaki sauce.  Finally able to drive this year, he and his friends go to the Cheesecake Factory where he gets the “Crusted Chicken Romano” – breaded chicken, smothered in sweet marinara – and he knows exactly what shot to take afterwards to counteract it.

Jonathan still chooses, however, to avoid the cheesecake.  And he says that, while he now can drink regular Coke, it is too syrupy for him – he prefers Diet, and puts Equal in his tea instead of real sugar.

The doctors we spoke to years ago may have been overly optimistic about developing a cure, but they were right about one thing – Jonathan is, in many ways, healthier than other kids his age.  Once, I thought the upside of getting diabetes so young was that he’d never know what he was missing.  Now I see that it is even better that he can now make these choices for himself.  Growing up, Jonathan could only rarely go on sleepovers or overnight class trips.  This month he has just been accepted to college, and he is gearing up to go off on his own – fully portable and completely in control of his diabetes.

Kristopher Jansma has a BA in the Writing Seminars from Johns Hopkins University and an MFA in Fiction from Columbia University.  He is currently a Lecturer in Writing at Manhattanville College and lives in New York City with his wife, Leah.  Please visit http://fortystories.blogspot.com for more!

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[…] not to take science lightly again after that.  And, when one year later, my 18-month-old brother Jonathan (whose existence could also be credited to penicillin, I suppose) was diagnosed with type 1 […]

maxine
maxine

Thank you for this article.  It’s wonderful to see the progress made in diabetes care in the last fifteen years.  It would be wonderful to find that “cure” his brother’s pediatricians predicted would happen.

Msmorell
Msmorell

Thank you for this great article. I am sure   it will help many other families. I am blessed to have JJ as a student and he certainly has raised awreness about Diabetes.  My job as a teacher is to share with others and continue to raise money to find a cure. We have come  a long way and I pray to see a cure in my lifetime.  Last year we raised 20,000 hope to do better next year.

Catherine
Catherine

I was diagnosed in 2001 and am incredibly grateful to be living in a time with such great — and constantly improving — medical technology. Unfortunately, I still find that even the best apps can’t actually control my blood sugar — I still have to struggle to keep it steady, and I can’t wait until there’s a closed loop system available. But I can’t imagine how much harder it would be without my pump and glucometer. Thanks for a great article — I hope to read more of your writing on the site!

Jennifer
Jennifer

Thank you so much for this thoughtful and informative piece.

Dan Jones
Dan Jones

Excellent article, and so nice to get a health positive perspective.  This site keeps getting better and better.

Julie
Julie

Thank you for this article.  As my two and a half year old has type 1, I thoroughly enjoyed it and am glad my son was diagnosed eleven months ago instead of eleven years ago!  And it makes me wonder what new developments will come about in the next eleven years.

Ms. Bibi
Ms. Bibi

Good for Jonathan and his strong family. Not all children living with diabetes have such a great family support and because of that they have to deal with lots of medical and emotional issues. My son is 12 and has type 1diabetes and reading this post I realized how much things changed over the years. My son is a healthy almost a teen who plays hockey and golf. We travel, camp, eat out without major issues…it does require lots of prep work and planning, but he can do just about anything. He just started on an insulin pump 7 months… Read more »

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