For Jonathan Reitzes, having type 1 diabetes (T1D) has always been a family affair. His older sister, Robin, has T1D, and so did his grandfather, who died from its complications when he was 72. Jonathan (he goes by Jon) a husband, father, filmmaker and cycling enthusiast, was diagnosed with diabetes in 1979, at nine months old—an unusually tender time considering that the peak years of onset for type 1 diabetes are between 5 and 12-years-old.
“I’ve never known a life without diabetes,” Jon said. “I don’t have another existence or a parallel life to compare it to. To me, it is what it is, I am what I am and I’ve got what I’ve got.” Now 34, he has been a patient at the Naomi Berrie Diabetes Center since its inception. The generosity of his family helped build the Center.
Smart, frank and funny, Jon Reitzes recently talked about what it’s like to live with type 1 diabetes your entire life. What follows is his story in his own words:
Nobody ever had to tell me that I was different, that’s for sure. In kindergarten, when most kids were just learning how to read, I was educating my teachers about type 1 diabetes—which they had never seen before. At the same time, I was trying to make them feel OK about their ability to take care of me.
When I was around 7 years old, I took over the job of giving myself insulin shots. There are all these responsibilities thrust upon you as a young child. It’s taken me more than 30 years to be able to say that sometimes having diabetes sucks. As a child I would never allow myself to say that, because I didn’t want to worry my parents. Not wanting anyone to worry is still a theme running through my life.
I remember when my grandfather was sick I would go into his room and, after reassuring him that all would be well, I would ask him if he was checking his blood sugar. ‘What’s the point?’ he would often answer. I was 9 and I knew that there was a point.
I think it helped tremendously to have a sibling with diabetes. I always had someone to look up to who told me what was going on. It was much harder for my sister. We always said that there were two kinds of people with diabetes. People who wanted to deal with it head on and people who wanted to be taken care of. I knew what kind of person I wanted to be early on. There were a lot of great people around me who influenced my thinking. Plus, you can’t have a life if you’re always worried about dying.
One good thing about having it my entire life is that now I’m adept at diabetes. By the time I was 20, I could have all the experiences that I wanted to have, because I was an expert at managing diabetes. (Today, I’m better at diabetes than anything else in my life, including my job, probably because I spend more time at it than anything else). I don’t know how people who have only had T1D for a couple of years manage their lives.
That doesn’t mean that I’m fearless, or that I don’t worry, but I’m more worried about my wife being worried about me, than I am about developing problems. I’m afraid of my son Marlon, 16-months-old, getting diabetes more than anything else. We did the right thing by having him tested at the Berrie Center—but there are other formidable life experiences I would rather him have than diabetes. This doesn’t need to be a family cross to bear. I feel the same way about my nieces and nephews, and it makes me sad to even think about it.
Still, the people I know with diabetes are some of the most spectacular people I’ve ever met. They’re my people. We’re like brothers and sisters. We love each other, we really do. I would like to help foster that kind of spirit and growth at the Berrie Center. I know how important it is to raise money to find a cure, but setting up a place where patients can feel kinship—as well as hope, support and community—is also important to me. I believe it will drive all the other efforts.
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