Diagnosed at just 20 months old, Ethan has been involved in the T1D community practically since birth….most recently, with a 77-mile bike ride in JDRF Ride to Cure and a meeting with a Virginia congressman about federal funding for T1D research. Outside of all this, Ethan is an up-and-coming hockey player with the talent to go to the pros. Did I mention he hasn’t even started high school yet? Here we sit down with Ethan to pick his brain about balancing life with T1D.
Word on the street is that you’re training to do a full 100 miles with JDRF Ride to Cure! What has training been like and what has helped you keep your blood sugars stable on long bike rides?
I struggled training last year. It was a borrowed racing bike, and I never really got the hang of it...hunched over, shoulders down, head up. My longest training ride was 29 miles, before the Ride in Loveland. The ride was hard, because it was very intense, I hadn’t trained enough for it and worked to keep my numbers under control. But the excitement kept me on my bike. And the JDRF Ride Coaches were amazing, riding with me for over half of the distance. This year, I’m getting my own bike, and I hope that, once hockey season is over, I’ll be able to get some real miles in, and really work on the BG control. I like how the local JDRF chapter has a lot of T1D riders, and they are always giving tips on managing BG during these long rides, since it’s so different from the ways that we try to control my BG for ice hockey. I hope my dad and I will be able to do the whole 100 miles course in Saratoga Springs, New York, in September. But, the payoff is crossing that finish line and celebrating with all of the other riders, no matter how many miles they did. That’s the best part of it.
What is the best low food known to man?
I love the usual juice boxes and gatorades. They work fast and get me back on the ice. We get monthly shipments of juice boxes from Amazon and my parents keep a case of Gatorade in the car. For my kit, I have fruit leathers, but those are a problem now with braces.
Funniest/craziest T1D story OR favorite T1D memory:
One time, the tubing on my pump starts sucking blood instead of delivering insulin. We called it my “vampire site.” But what gets me the most is when my meter dies from being “to cold.” It happens a lot, because I keep my kit on the bench during hockey. I have to open up batteries on the meter and blow on them to warm the meter up.
What do you think is the hardest thing about living with T1D?
I get frustrated when everyone around me is eating right in front of me when I have to stop, pull out the meter, test, and bolus. But I really hate the misconceptions. You know, the things like “how can you have diabetes. You are thin.” or “an athlete.” Or asking if I should be eating “that.”
What advice would you give someone who is newly diagnosed?
Stay on top of your numbers. I’m still working on it. When my numbers go, they start swinging, and then it’s low then high then low, and I hate lows, especially during practice.
When you make it to the National Hockey League one day, what is your dream team to play on?
Well, it’s CAPS CAPS CAPS all the way. The San Jose Sharks or Calgary Flames are distant second choices.