Honduras, Death, and a Girl I Never Met.
A couple of nights ago, I was having dinner with a friend of mine who also has diabetes. She told me that she had encountered a grandmother with a recently diagnosed teenage girl and how she had a difficult time helping this woman because she herself had been diagnosed at 19, essentially skipping being a teen with diabetes. We spoke at length about the advice I usually give parents with diabetes, and it was especially timely because this is the subject of my talk at Diabetes 2.0 next month.
But it wasn’t until yesterday, when I was taking the train home from work, that I remembered Maura.
Maura and I were both part of this special youth diabetes ambassador program that Children with Diabetes had set up nearly 10 years ago. It was called the International Diabetes Youth Ambassadors or IDYA (pronounced “idea”). Maura was about 13 years old and lived in Honduras. She was very poor and like many children living in developing countries, she did not have much access to medication. The group sent money to a clinic she went to, where they were able to purchase some supplies for her. I believe we even sent bottles of insulin or glucose meter test strips directly to her. She wrote occasionally, but I don’t believe she had much access to the Internet, so most of what we heard was through other ambassadors or from the grown-ups who helped run the program. I never really paid that much attention to Maura, though I sometimes asked Kari Rosenfeld (the mother of my friend Clare Rosenfeld, who was the founder of IDYA) about her sometimes.
Then one day we received an email that Maura had died from hyperglycemia.
I had never met this girl. I had never actually written her at all or thought about her that much. But when I found out that she died, I cried. I cried for awhile, actually, in our home office where I did most of my work as a teen, with my parents in the other room.
It shocked me that someone so young could die from a disease that I was living with. To me, death from diabetes was something that happened to old people or people who didn’t take care of themselves. It didn’t happen to teenage girls. But Maura died from her diabetes because she couldn’t take care of herself.
Couldn’t take care of herself, but wanted.
When I think of her, I think of a teenager who wanted to live, and probably would have gone on to live an amazing, meaningful life. She wanted to live but she didn’t have what I have. Her death taught me to be grateful for my life, and that (among many other things) is what helped keep me going.
There were a lot of things running in my head during my train ride back to the city, and there still is. More than what would probably make a coherent blog post. But the point I wanted to make, and more importantly, what I wanted to remind myself of, is that there are so many people out there who are struggling just like you. That there are people who don’t just want to survive diabetes, they want to live the life they were meant to live. And Maura couldn’t do that. But I have access to all the technology available to someone with diabetes, so what gives me the right to say no to something like that?
So I don’t say no. I keep trying. Sometimes I don’t do a very good job of it. But I try, because at the end of the day, there are two groups of people: the people who are defeated by diabetes because the illness is tough and sometimes what you have just isn’t enough, and the people who are defeated by themselves.
I plan on winning. For Maura. For everyone who has lost.