Welcome to JDRF Bay Area’s blog, One on 1, a series of interviews with people who live with T1D. Members of the community talk about how T1D affects them, how they manage it and how they have conquered it. We caught up with Jason Finkelstein, family man, and Vice President of Marketing at Location Labs, a mobile security company:

JDRF Bay Area: When were you diagnosed with T1D? How has your outlook changed over the years?

Jason: I was diagnosed when I was 11, and at the time, the worst part about it to me was that it made me stick out. I was so concerned about not being “that kid,” as a matter of fact, that I actively hid my T1D, much to my detriment. I checked my blood sugar as little as possible, only 2-3 times a day–half as much as I probably should have been. I sometimes delayed giving myself insulin until no one was in sight. And I paid the price. In retrospect, I realize I probably didn’t do as well as I might have in school, at sports, in friendships, because I spent more time than I needed to dealing with low blood sugar and the fatigue and moodiness that comes with it. I let the thing I wanted to hide run my life, by not taking responsibility and managing it.

When I entered business school, many, many years later, I discovered how much more rewarding (and interesting!) it was to track, chart, trend my blood sugars and insulin dosages using basic technology like Excel spreadsheets, and therefore finally started taking care of myself. I realized, ironically, that only by accepting that I had the disease could I really stop letting it control me. I tracked my blood sugar levels somewhat obsessively, and, though sometimes the results were a bummer (“You mean even though I’m eating better, I’m still too high/low 75% of the time?”), knowing what I was actually dealing with, facing reality, has made all the difference.

JDRF Bay Area: How does T1D management fit in with your busy days at the office?

Jason: I’m so used to pausing 6-7 times a day to check my blood sugar that it doesn’t even register anymore, honestly. I don’t plan my days around it. Carrying my blood glucose monitor and insulin to meetings is easy, and most of the time, I’m in or around my office. What’s a little more challenging is when I’m in a long meeting that’s hard to step out of. Now I have a CGM, which means I don’t necessarily have to carry the blood checker, and that does help. But still, I rely on the confirmation that everything’s good, and I prefer to actually test my blood manually for that. The real difficulty comes when I travel, whether for work or pleasure. If I’m more than a few time zones ahead or behind, sleep-deprived, or off schedule, that takes some deliberate thought.

Now that I don’t try to hide my T1D, I make it a point, in fact, to make sure the people I work closely with know I have it, know how to recognize symptoms of low blood sugar, and know what to do to help me if I’m not able to help myself.

JDRF Bay Area: What do your kids understand about T1D?

Jason: They’re 6 and 3, so they understand that Daddy has certain responsibilities and obligations to keep himself healthy. My 6-year-old will sometimes say, “I want to get one of those things that you wear in your side.” Now, obviously I don’t want that for either of my children, ever, but it does make it clear to me that they pay attention and notice more than I might think they do. Of course, eventually I want them to be more and more knowledgeable about T1D and what that means for me and everyone who deals with the disease, but I think of their education on it as a continuum. As much as they want to know at any given time, I tell them, bit by bit. I use the “Just answer the specific question they ask, and leave it at that” rule of thumb and try not to lecture them, but rather respond to their natural curiosity.

JDRF Bay Area: You and your wife are big supporters of the JDRF One Walk. Why is this event so important to you?

Jason: I’ve walked in JDRF Walks for 28 years, in 3 different states (Maryland, New York, California). Now that I have a wife and kids, I think of the One Walk more through the lens of my kids. My wife and I want our kids to know that not only is learning about, managing, and working toward a cure for T1D a big part of our family, it’s a big part of a lot of people’s lives. And not everyone is as well-equipped as I am, as we are, to deal with it and lead long, healthy lives in spite of it. Walking and raising money is not only vital to creating a cure, which I think is possible in my lifetime, it’s vital to my children’s awareness that the world is full of people in need, and that we all can help, in a variety of ways. I also want them gradually to understand that it’s not just adults who can help—kids have a lot of energy and a lot of power, like some of the younger T1D kids I’ve met (at the SF Walk!) and read about over the years, who raise tens of thousands of dollars and aren’t even out of middle school yet. I also want my children to learn how to be committed, that consistency matters, and the best way to teach them this is to demonstrate it. Every year, no matter what we have going on, this is one of the most important things we do as a family, rain or shine. I hope that experience sticks with them, whether what they set their minds to as adults has to do with T1D or not.

JDRF Bay Area: What do you want people to know about T1D?

Jason: This is a tricky question, because it involves 2 ends of the spectrum. On the one hand, I want people who don’t know much about the disease to understand its implications better. For instance, I don’t think a lot of people are aware that T1D, even if you manage it very, very closely, will undoubtedly shorten your life span. Even with CGMs and insulin pumps, I just can’t manage my blood sugar as well as a normally functioning human body does it. These kinds of stark terms aren’t usually front and center, and they should be. Because when I’m asking people who love me to contribute, what I’m really saying is, “Please help me possibly live 5 or 10 years longer than I might without a cure.” That resonates. And I think many folks don’t know enough to know that while insulin has changed T1D from an immediate death sentence to a manageable disease, it’s still a disease that takes short and long-term tolls. Insulin is not a cure.

At the same time, I want people who have it and are struggling with it, or who have just been diagnosed and are understandably worried, to know that it does not have to ruin your life–not even close! I want parents whose child has just been diagnosed to recognize how many resources are available today that weren’t even a reality when I was a child. Insulin has gotten so much better than it used to be, more responsive, more subtle. Monitoring and management tools are so much more sophisticated and easier to use. It’s certainly not worth giving up all the years of terrific life you do have for fear that you may not live quite as long. Manage it, stay on top of it, and your effort will be worth it. The more you do that, the longer you’ll probably be around, and the better time you’ll have while you’re here.

JDRF Bay Area: What would a cure mean to you?

Jason: Honestly, the first thing that occurs to me is how much space I’d have in my mind if I didn’t have to think about T1D anymore! I mean, managing the disease is always in my mind, even if it’s just a little hum in the background, reminding me to eat, to check my blood sugar, to keep things in balance. What would I do with all that time?!?

Most obvious is I wouldn’t have to do manually what my body would now be able to do for me. That would be a huge relief. The bigger relief would be knowing that because T1D wouldn’t be taxing my system so much any longer, I’d probably be around for a few more years. I’ll take that.

Most of all, though, a cure for diabetes would relieve me of the enormous mental weight I carry but don’t like to dwell on, which is worry that my kids may one day have to deal with T1D, too. To know that even if one of them was diagnosed, there would be a shot or a pill or a treatment to make it go away, 100%, would be more important than any benefit to myself, truly.