Thursday, October 21, 2010
It could be any of us
Thirteen-year-old Eilish died earlier this week as a result of Type 1 diabetes. Her family has been an active force in the Children With Diabetes forums, and the tragic news of young Eilish dying while she slept took everyone and all of us in the DOC by surprise. Apparently another example of what's called "dead-in-bed" syndrome.
I awoke to this shocking news Wednesday.
Like many in the DOC, I lost sleep over this last night. My mind kept returning to this tragedy. Replaying it over and over, until it consumed my thoughts. I'd planned to finish some work from the office home, but couldn't find that focus. Too much tragedy was in my heart, for a girl and a family I've never met and probably never will.
Last night, I cried.
Then, I updated my Facebook status as so many others have done, honoring Eilish and her family and lighting a virtual candle in tribute.
My heart hurts. I'm mad, sad, and scared all at the same time. This loss feels so personal, like it was someone I could've known my entire life. Even though it's a girl and a family I've never met.
But, it comes down to the simple fact that this could be me. It could be any one of us.
We tell ourselves and others that diabetes is hard but "manageable," that it's just "a way of life," maybe to soften the blow that it sucks in so many ways. Maybe to mask the fact that we're scared the heck that there's a real, possibility we can go to bed one night when everything's fine and just not wake up. That no matter what we do, there's never any guarantee we'll be OK.
My parents took care of me when I was younger, battling off Lows and making sure they did what was needed to keep me alive. They ensured I learned how to do this D-Management myself. Now, my wife is there to make sure I wake up if I lose the ability to do so. She's crammed cider, honey, and frosting into my mouth when times I am thrashing wildly or looking dazed and confused. Stabbed me with Glucagon. Called the paramedics more than once when my arm-swinging and fighting became too much to risk to her own safety. Without her, I could've perished several times over. In the past, friends from various parts of my life have been there, too. They have all kept me alive and I appreciate them every moment of every day. Especially when something like this happens.
But young Eilish's death shows that tragedy can strike even when we do everything right, when there are those nearby who will always be there to help us with every single breath.
In describing how her parents had cared for her since the age of 3, it's said: "They absolutely did a wonderful job attending to the diabetes care of Eilish, all precautions were taken, due diligence and protocol followed, pump checked, blood glucose checked all in the most timely manner."
No one did anything wrong here. They did all they could, but this happened anyway. A young girl was taken too early.
We talk about D-Management and work diligently to do our best, all while balancing regular life tasks and the emotional struggles that come with Living With Diabetes. But we always fear this could be possible. We don't like to talk about it, or dwell on it, but that fear is always there. Those of us who were Children With Diabetes, Teens With Diabetes, Young Adults or older Adults With Diabetes. This is a fear we live with, all the time, even when we're testing 12 times a day and obsessively monitoring our CGMs and trying to get ourselves toward "tight control" for a lower A1C.
All the meters and CGMs and low A1Cs and years/decades of D-Management don't replace the fact that you can die because of diabetes. Even when no one "does anything wrong." It's cruel, it's unfair, and it's tragic.
We need a cure.
Eilish unfortunately isn't the first we've lost, even this year, and sadly she likely won't be the last in the long-run.
Today, we remember her and pray for her family. We pray and wish the family well. Then, we continue advocating and educating so that this invisible illness becomes more visible. So that everyone knows that despite all the insulin advances and technological tools we may have, we People With Diabetes are still just on life support. And sometimes, that life support fails no matter what we're doing right. We cherise what we have and what we can do today, and hopefully someday we won't have to endure these tragic deaths from diabetes.