The DX regularly features The DX Diabetes Dish, a profile about life and life with diabetes. This month, we dish with diabetes advocate, blogger, and actor Tom Karlya, who currently serves as vice president of the Diabetes Research Institute Foundation. Karlya became a “d-dad” in 1992 when his young daughter Kaitlyn was diagnosed with type 1 diabetes. His son Robert was also later diagnosed with T1 diabetes at age 13. Karlya has lectured internationally, has written and produced diabetes-related PSAs, and has received several prestigious awards for his advocacy work. His blog, Diabetes Dad, helps educate and inspire parents and anyone who lives with diabetes.
What is your state of mind today?
Ready. Ready for whatever in a life with diabetes. You have to be ready to go, ready for your kids, ready because there’s a donor who wants information, or because somebody needs your help.
What three words would you use to describe who you are?
Focused. Driven. Tireless.
How does diabetes change – or not change – who you are?
Diabetes has given me goals that benefit my kids and those like them. That is, absolute, real goals to impact kids with diabetes.
If you could take away one aspect of diabetes, what would it be?
Fear. As much as you try to manage this disease, there’s always the unknown. You can handle it when it comes, but that fear of something happening to them that they themselves fear…I can sense this. Unspoken fear is real. If I could get rid of it, my day would be one degree happier.
What inspires you to do what you do?
My two kids living with type 1 diabetes. My saying is “When they get a break, I’ll get a break.” Burnout is a word that shouldn’t exist in the lives of those trying to make a difference. My oldest is twenty-five and he doesn’t have it. Kaitlyn, who is twenty-two, and my son Robert, who is now seventeen, have both been diagnosed for years.
What do you appreciate most in your friends?
Loyalty. Unrequited love. It requires give and take, and I have to be there so they can lean on me and I can lean on them. It’s just an exchange of love with absolutely no requirement – just a bond of love, which leads to loyalty.
What would you pack for your favorite vacation?
I wouldn’t have to pack anything; I’d just go and it would all be waiting for me.
What’s in your refrigerator right now?
I have two shelves of diabetes supplies, and I have all sorts of food…milk, OJ, half- and-half, bologna, cold cuts, spaghetti and meatballs, dressings, and all the other fridge stuff. I never wanted diabetes stuff in my fridge, but of course I need to have it there.
What is your favorite way to relieve stress?
Listening to Broadway music. West Side Story is my favorite, which is a show I did when I was pursuing acting. I will get back to acting regularly after diabetes is cured.
What is your idea of happiness?
Achieving short- and long-term goals. Also, something more tangible – a house full of music and laughter. I’ve always believed that laughter is the ballet of life, and if you learn to laugh, you can get through almost anything.
What do you most dislike?
Stupidity. Stupidity is the unwillingness to learn.
What’s your favorite diabetes management tip?
Always have a backup for your backup of diabetes supplies. If you think you have an extra set of something, make sure you have another set. I guarantee sometime in your life you will use it.
What words do you try to live by?
One of my favorites is the phrase “don’t do nothing.”
What is your greatest fear?
That my children’s well-being won’t stay that way.
What is your greatest extravagance?
Getting a chance to act. It’s rare because there has to be time on the weekend for me to do it. Once every three or four years, I get to do something like a film.
On what occasion do you lie?
Only on stage, when called for.
If you could change one thing about your family, what would it be?
A cure for diabetes, obviously.
Who are your heroes in real life?
My kids and all kids that have diabetes…I continually believe that diabetes will not do in their lives. And clearly, their Mom is certainly a hero to me; my kids would not be alive today if my wife wasn’t doing as much as she does.
What would you choose for your last meal?
The same as every meal – I go to the finest Italian restaurants and I order spaghetti and meatballs. I remember having it in a highchair – there’s not a better meal on this earth.
All opinions contained in this article reflect those of the interviewee and not of Sanofi US, its employees, agencies, or affiliates.
© 2013 The DX: The Diabetes Experience