Today I find myself, for reasons outside of this blog, thinking about community. Not my town or my church or temple, but the “world” I joined more than 14 years ago: the Diabetes World.
Back when Lauren was diagnosed, there pretty much was no online world. There certainly were no diabetes bloggers. It was so long ago; in fact, I can remember looking up “juvenile diabetes” in the Yellow Pages. Man, that’s like Fred Flintstone stuff.
In any case, I found myself, for a good long time, with just about no community at all. We’d met one other family who had a daughter the same age diagnosed the same day, but they lived pretty far away. So as a D-Mom, I was totally alone. Surrounded by caring friends, but totally alone.
Then, about a year later, I found out about a support group for parents of kids with diabetes in my state. They called it a “networking coffee,” and it was about 50 minutes away (go ahead, Google map Plymouth to Wayland in Massachusetts.) There were no GPS’s, but wrote out the directions, put Lauren on the school bus that morning and drove all that way, not knowing what to expect.
I walked past the multiple cars in the driveway, toward the sound of talk and laughter from the inside. Nervous, I knocked on the door and entered. And there, in that moment, was my first taste of true community. The kitchen was full of chattering moms (and maybe one dad). For the first time in a year, I was surrounded by people who actually knew what I was talking about. People who were as worried and pissed off and just trying to get by with all this just like I was. People who were not ever going to say “I heard they have pills for that now.” People who knew the shots weren’t the worst of it. People just like me.
I drank it in deep. Some of the women I met in that room that day are still dear friends (Claire, Nancy, Lori . . . I may not see you as often but I sure to think of you all the time).
I was remembering all this because really, for D-Moms (and D-Peeps in general) today, community is really just a mouse click away.
But is it really? Sometimes I think the ease in which we can all get connected – and disconnected – today makes folks take it all for granted. Look, after that first meeting, you can bet I drove that long way each way for that support each month. I’d been completely dehydrated of human empathy that first year, and now I had a place I could drink it in deep. Like the proverbial guy crawling in the desert, I was going to do what I had to do to get to what I needed.
And I think that made us all care for it a wee bit more. I can promise you, that group that got together monthly didn’t always agree on things. Pumps on little kids was a new concept back then, and some parents were going down that road but others were not. Yet I didn’t hear judgment. I didn’t hear tongue clucking. I just saw folks who listened, shared, respected and tried to help one another.
I don’t always see that on line. The other day someone – I don’t even remember who it was now – wrote on facebook or a site or somewhere, how “disjointed” they felt the DOC (diabetes online community) felt. They said they felt competition between different groups, whether it be for different associations or different ways of treating their diabetes. I told them what I found funny about that was, on the street level, the diabetes world really isn’t that way. There are no street brawls with angered JDRF’ers when the ADA walk comes to town. There are no meetings where DRI folks talk smack about private labs. At the street level, the diabetes world gets along relatively well (No complicated relationship is ever perfect). I can tell you that when I chaired the National Government Advocacy Program for JDRF, we worked in cooperation with ADA, so we’d not duplicate efforts and so we’d get things done. Truth.
Here’s what I think is happening on line: Just like in the entire on line universe, it’s too easy to “create” a persona you might not exactly be (how many of us know a “perfect person on line” who in real life is, well, a tiny bit off of what they protest to be via their photos and posts?). At the same time, we sit alone (even though we feel we are “connected on line”) and in the darkness of our room, we can type out just any old harsh thing. Not having to look someone in the eye is not always a good thing.
So the question is: how to we evolve the DOC to be a place where we still get the instant connection and support we need, but we maintain that same kind of grace (and sometimes bite-your-lip-ness) that we’d have face-to-face? It’s not an easy task.
I used to say this to my daughter when AIM was the big thing (before the days of Facebook and gosh, even My Space): when you say something out loud, it might be heard but it drifts up into the air. When you write something down, it’s there forever. Sometimes I think all this cool connectivity makes us forget that something in ink is permanent, shareable and not something you can go back on. The hurt doesn’t go away. In fact, others sometimes add onto it.
We need to find a way to use the very good: the fact that we live in a world where really, no one ever has to feel alone as I did that first dark year again, and somehow meld it with those lessons we learned long ago: treat others as you’d want to be treated. Don’t assume you are the all-knowing. If you are angry; step away for a bit. I’ve been trying to do more of that myself. (Not easy for a hot head like me).
And while I understand that with today’s technology it is so easy to create your own on line group that you can just turn away from others and have your own club, I’d prefer a world where even if we do have some “sub on line clubs” overall, we are all on the same team. Diabetes is a monster, and we need our collective strength to fight that monster.
Now, how do we build online communities that completely mimic real-life meet ups? That’s a lofty, but worthy goal.
What ideas or dreams to you have for the “diabetes community?” Share them here — let’s make them happen.
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