I know my beeps. I know my beeps similar to the way a parent can recognize the cry of their baby. I know the sounds that my insulin pump and meters make. I don’t get them confused with other alarms, dings, and noises of everyday life. And since I’m usually not surrounded by other pump wearing diabetics, I know that the beeps are for me. That is until I go to a diabetes event. What a strange phenomenon it is to be surrounded by dozens of other diabetics. My beeps become lost in a sea of similar noises, mixing with the sounds of countless other pumps and meters. My unique identifier becomes a unifying force, a sound signifying a shared experience.
|My contribution to this year’s mosaic mural|
The past two weekends I’ve had the pleasure of attending 2 different JDRF walks, one in Chicago and one in Ann Arbor/Dexter. In Chicago, I was volunteering with an amazing organization called Project S.N.A.P, collecting artworks drawn at the walk by T1Ds, their families, and their friends to become part of a giant mosaic mural. You can read more about my experiences with Project S.N.A.P in this post, or on their website. The second walk I attended as a representative of the Young Leaders Committee of my local JDRF chapter. It was the second JDRF walk that I’ve ever attended as a walker.
I attended my local diabetes walk with my mom. The walk was in a beautiful Metropark, the path winding through trees with changing colored leaves. Although it was raining, it was still a beautiful and enjoyable walk. At one point my mom turned to me and asked if I was sad/upset that we didn’t really do these walks when I was growing up. I wasn’t mad. Mostly because I knew that my family always supported me. The walk that day was a perfect example. Knowing that I wanted to go to the event, my mom skipped her normal Sunday plans to wake up early and drive 45 minutes to walk in the rain with me.
But even though I am not upset, I know that I did miss out on some amazing experiences. When I looked around at the walks, I saw teams sometimes with 10-30 people all there for one special type 1 diabetic. They were there showing their support by physically coming together, by putting on their team t-shirt with their creative names and bright colors, and spending the morning dedicated to that one child with diabetes. I can only imagine how special that child must feel. Yes, they were being singled out because of their diabetes, but in a positive way. For at least one day each year, that child isn’t alone in their experiences. They aren’t the only child with diabetes. They are able to come together and see other children just like them, to meet and talk with them.
My parents had their own reasons for not pushing to go each year, but I know that if I had expressed an interest to attend these walks when I was younger, that we would have gone. Perhaps I didn’t know at the time what I was missing out on. I was content with the support from my friends and family and with the few other diabetics that I knew. But these past two weekends while I stood in a sea of other diabetics, I heard those beeps, my beeps. And while it was confusing and odd to hear them, each beep seemed to say “You. are. not. alone. beep. We. are. in. this. together. beep.”
Your post made me reflect on my relationship with my family in terms of diabetes. I was diagnosed at 18 so already an adult, and even though my parents were technically supportive they never took part in my care. They don't even know what A1c is (19 years later!), and they never contributed to any of the JDRF walks I did later on. Not that they don't care but they left me to my own devices. For about 10 years I didn't speak to a soul about my diabetes, then I joined some online forums and finally got to discuss it with others. I still don't feel like I'm part of the diabetic family – even after 19 years of having t1 I still feel like the outsider. I only know a few diabetics in my area – and none of them ever mention diabetes, so I still feel like I'm alone in this, unless I connect with people online 😉 My beeps are still only mine 😉
It's so interesting to hear other people's experiences. Even being diagnosed at 12, I know that my experiences are very different than the people that were diagnosed at babies or younger than me. I would never consider you an outsider though and I know others would share my view, you are part of the diabetes community!
Thank you, Reva. That means a lot. I guess I just feel that all those years in isolation have made me miss out on things, and it's only recently that I've reached out to people. I feel like everyone knows each other in the diabetes community, and I'm still very much a newbie 😉 Even though I've been diabetic so long…
Love your contribution to the mural! Thanks
Great post, Reva, and what an awesome mural there you made — such talent! First, I love the way you open this. We totally know our beeps. And know that's going to be on my head the entire day… 🙂 But I'm like you, in not really participating in walks or bike rides when younger. We did a couple early on, and then I got involved as a teen some, but nothing all too much. There is a part of me that wishes I had been more involved and done these more regularly, just for the chance to connect with others. I did feel alone, even though I wasn't wanting to admit that when I was a kid and teen. Glad you got to participate in these recently, and hoping to do more of that on my end, too. Thanks for sharing this. And I hope to see you again at the May conference!