Tuesday, April 14, 2015

Imagine playing a game where you must check and track your score 24 hours a day, without ceasing. You must know your score when you wake and before going to sleep. When you are about to eat, and after you've eaten. When you are going to exercise, and when you are going to sit for long periods at a desk, in a car, on a plane. And often you must wake in the middle of the night to, yes, check your score.

Your score changes constantly, and despite having played this game for a decade or more, your experience sometimes (often) fails you, in that your strategy that worked last time doesn't always work the same way again.

How do you win this game? You maintain as consistent a score as you can, never going too high or too low, and your prize is to play all over again tomorrow. How do you lose? Well, score too high, too often, for too long a period, and you may be knocking years off your life. Score too low? Unless you bring the score back up, right away, well, it could be life threatening. 

As you may have guessed, this is no game. This is life with Type 1 Diabetes, with which I have lived, 24 hours a day, for just shy of 11 years.  And with which my daughter M has lived for more than 6 years -- since shortly after turning three years old. While I knew 26 years without Type 1, M has no memory of a time without the finger pricks, needles, carb counting, midnight lows, post school highs, and parental worry verging on hovering that is the routine of a third grader with Type 1.

But life does go on, and one manages. That what does not kill you makes you stronger, and all that (and like Monty Python's plague victims, "we're not dead yet!").  M exhibits grace and good humor while tackling her Spanish Immersion school, Girl Scouts, chorus and soccer, to say nothing of her open heart as a friend to many and big sister to two little brothers she adores.

But there are moments, when it gets to her. It often comes at bedtime, after an insulin pump change or a series of stubborn lows or highs, when M expresses her deepest frustration with her unfair burden. When she quietly voices the admission that she hates this thing, this life, which she did not choose and has never known differently. That she doesn't want to have Type 1 Diabetes.

As a father, my heart breaks at these moments. I try to comfort her as best I can, to make common cause by confiding how much I deeply, deeply hate Type 1 as well. I tell her that diabetes is the one thing, the only thing, about which we will tolerate, always, the use of bad words. Because diabetes is worthy of bad words, of cursing.

She is quiet for a moment, pausing in her tears. Then suddenly she stiffens up straight in her bed, locks eyes with me with all the steely determination a nine-year-old can muster, and pronounces diabetes: "Stupid."

M inspires me. I struggled against Type 1 for years before M was even born. Yet it has been her courage and grace in handling her own Type 1 burden has taught me patience, acceptance, and hope.

Patience, because that is required to make it through each day when one's pancreas just won't work as designed.

Acceptance, because at present there is no cure, and dwelling on "stupid" diabetes merely stands in the way of all that life has to offer.

And hope. What hope.  For the first time since the discovery of insulin a century ago transformed diabetes from a certain and immediate death sentence to a somewhat manageable pain-in-the-ass chronic condition that only occasionally kills, we are on the verge of a real revolution in diabetes management.

To be sure, I don't mean a "cure," at least if a cure is understood as a complete reversal of Type 1 and restoration of my bum pancreas to working order.  This may not come in my or even M's lifetime (see Patience and Acceptance, above).

But a revolution is coming nonetheless, in the form of an Artificial Pancreas, a set of medical devices that will automate the day-to-day, hour-to-hour, minute-to-minute management of Type 1 Diabetes. Such a device exists already, and has proven in human trials to be dramatically more effective at successfully controlling blood sugars in adults and children with Type 1. The same trials have shown it safer than any insulin pump currently on the market.

The hope this instills in me is almost unbearable. The fact that in just a few short years, M won't have to stop and remember to test, carb-count and administer insulin before eating cake at a birthday party. Or leave class a few minutes early to stop by the nurse's clinic before lunch. Or come out of a soccer game because her blood sugar has dropped to a dangerously low level.

In a very real way, the Artificial Pancreas will give M her freedom back - the freedom she knew for for only three years, and of which she has so very little memory.

But we aren't there yet - much more work is needed to get this miraculous biomedical engineering breakthrough out of the trial phase and into the hands of millions of Type 1 diabetics like M.  That's why I'm asking you to consider helping us by contributing to JDRF, the world's leading non-governmental funder of research into Type 1 Diabetes, and the driving force behind the Artificial Pancreas.

No amount is too small, but I hope you will consider giving as much as you can afford. Your donation will go far in helping M live a better, more fulfilling life while more successfully managing this "stupid" disease.

Type 1 diabetes is no game. But nonetheless, together, with your support, we can win at it.