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What Defines Our Community?

What defines our diabetes community? 

At the Smithsonian, there is an exhibit called "Portraiture Now: Communities."  It's described with the following (edited) language:

"How do we define community today? Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction. Each of the three painters selected for “Portraiture Now: Communities” has explored this idea through a series of related portraits of friends, townspeople, or families. ... Seen together, the paintings by these three artists suggest the enduring power of personal communities."

I can't remember how I stumbled upon this exhibit, but the idea of it really moved me.  "Community" used to be defined by who lived in your zip code, or who went to your school district, or just what faces passed you in the hallway at work every day.  Back when I was a little peanut, my community was my family (there are a lot of us), my school friends, and my fellow tap dancers from Miss Jeanne's dance class.

Since second grade, I've always been part of the diabetes community.  Back in those days, there weren't many tell-tale tubings sticking out from underneath someone's t-shirt, and kids didn't test as often or as openly in the classroom.  But when another child in my school district was diagnosed, an instant bond formed between he and I, and between my parents and his.  Even if we hadn't met yet.  I had a sparse but crucial community of other Rhode Islander children with diabetes, and when I attended Clara Barton Camp in the summers, my community of "other kids who got it" expanded by leaps and bounds. 

But I grew up, and in those foggy years between 9th grade and my first job out of college, I was alone.  Alone with diabetes, yet still part of the diabetes community.  No one knew I was there, but just hearing someone at school mention "their cousin who has type 1" or "That lady they were waiting on at the restaurant who freaked out when the diet soda was switched - she said she had diabetes," made me feel like I was instantly connected to these imperfect strangers.  

And then I found you guys, drawn in by a desire to not feel alone anymore and wanting to share, out loud, the emotional burden of diabetes that I carried for a very long time by myself.  A whole community of people who were either living with diabetes themselves, or loving someone who lived with it, and who understood exactly what I meant when I said, "It's just ... ugh, you know?"

What defines our diabetes community?  Is it the common thread of syringes and infusion sets and the pile of test strips we leave in our wake?  Is it the shared fear of complications?  The universal celebration of a lowered A1C?  The muttering of "Lows are The Suck," and hearing, "I know what you mean," in return? 


I thought about what a "Portraiture" of the diabetes community would look like.  I pictured all those photographs so many of us have taken over the last few years, the ones that show a bunch of grinning people with their arms around one another.  It's only if you look really closely that you notice the pumps clipped to pants pockets or calloused fingertips.  

"Through new electronic networking, our connections with family, friends and acquaintances are increasingly widespread. And yet, we are still drawn to the idea of small communities and face-to-face interaction." 

Face-to-face interaction is such a huge part of feeling like a community, but it's not the only thing that makes us one.  Whether you want to be part of the diabetes community or whether you are rebelling against the very thought, the fact remains that it's there for you, and will always be there for you.  There's a certain comfort to knowing you aren't isolated or alone.  There are people who understand.  

The definition of our community is found in the people who are part of it.  Each and every one of us:  the bloggers, the lurkers, the medical professionals who care for us, the parents of kids with diabetes, the kids with diabetes who have grown up to become parents themselves, the lovers, boyfriends, girlfriends, spouses, friends of diabetics, the immediate family members and the ones who are slightly removed, the employers, the employees, the strangers who help us get juice when we can't help ourselves, the friends, Romans, and countrymen of the diabetics ARE the diabetes community. 

It's a far-reaching group of people who share more than just a busted pancreas.  

It's a true community of people who understand, despite different backgrounds and preferences and opinions.  We're in this together, and as I'm preparing to bring my daughter into this community as a "child of a person with diabetes," I'm thankful that she can find support as a caregiver in this sea of people who have been instrumental in helping me achieve the strength to bring her into this world.

Comments

Oh Kerri, what a lovely post! Shocking that you would make me cry. Reading your posts neeeeeeever does that. ;) Really though, a very thoughtful and real post. Thank you.

Amen. I love this place.

This community is part of the reason I am living a healthier life now than I was 18 months ago.

And speaking of face-to-face interaction, PAX-East is only 49 short days away. I know you're excited.

Kerri, one of the best things I have read in a very long time. The way you describe the all inclusive nature of everything D, and how you described the need for face to face interactions was refreshing.

Thank you,
Thomas R. Moore

Great post, Kerri! I can't imagine not having some kind of online contact. I know almost no "real life" diabetes families so all the folks online are my source of support and inspiration.

Wondeful post! For us, as a parent of a CWD, being able to connect with all these other PWD and parents of CWD make our life seem so much less strange. When I talk to real life friends, often I'm met with blank looks or odd questions (especially if I say something like "geez, my child was sooo high all last night") but in the Diabetes community, you all instantly got exactly what I meant; that I was probably up half the night, bolusing and testing and giving water and listening to his feet slowly shuffle to the bathroom at 3am. And so, my life and that of my child, just seems perfectly like everyone else's. :)

Love the D-OC. Love, love, love.

((hugs)) to all.

Thanks for this great post Kerri.

I can totally see you doing jazz hands as a "little peanut" ;-)

All kidding aside, the DOC is also why I am doing better, emotionally and physically, than I was a year or two ago. It would be nice to meet other t1s in the wild, and some of the DOC one day in person, but I don't know what I'd do without that smiling sea of faces above in my bad moments. You mean more to me than you know.

And we are all SO going to enjoy watching little BSparl grow up!

I've found the DOC to be incredibly inspiring and supportive, and in some ways it's changed my life. But I've also had a hard time figuring out how to 'get connected' without having a blog of my own. Hmmmmm ......

That is a great post, Kerri! Indeed, the DOC, however we define, has made my life with the D a lot more bearable

As you know, G and I met as a result of a bulletin board back in the mid-90's. The community that was built there is the only thing comparable to the DOC. We may have only seen each other twice a year, but the face-to-face was just as important as the everyday BBS fun. Many of us are still in touch - these people who would have never known each other ten years before.

And ten years later, I found all the d-bloggers when I needed it most. Our d-world at home was turned upside down and all around. This helped right it and make it strong. I don't know where we would have been without this community.

I was just telling someone this morning that I have found a voice, an outlet, and a community of support through blogging.

At Family Fun Night at my daughter's school last week, the fourth grader with diabetes came up to Quinn and said to her friend "This is Quinn, she's the other diabetic." I was a little touched by the introduction and I immediately felt relieved that though she may feel different from her classmates at times, this older student was showing her that she is acceptable. I was glad to see that she too had found a community.

I was just thinking about this yesterday, as I realized I spent way too much of my workday reading the blogs of fellow diabetics. I have no diabetic friends, and as supportive and well-meaning as my friends and family are, they don't "get it" like you kids do.

There's Magical, Mystical mind powers at work. I too was thinking about this. Once again, you've tapped it and funnelled what so many of us are thinking. Maybe BSparl is channeling the Inner Gypsy. Ditto on the above comments, as I too am healthier and better off for having the D-O-C (and DMob) to lean on. Thank you, ALL.

what a lovely post kerri.

only recently have i found the wonderful online diabetes community, and thanks to that (and since stumbling upon SUM) I've learnt so much more than I ever knew before. So thank you for posting this, and all your fabulous posts.

You are an inspiration :) ♥

Sam (TBG)

Thank you for this great post Kerri. I have found such support, such knowing and such friendship in this community for my Type 1 daughter. It has literally saved us. It has made us feel not so alone.

i heart the DOC! you've explained it so well, Kerri. it is a remarkable community. hey...just read your post for tomorrow too (i'm a west-coaster!) I hope Oprah and the Dr. wizard of Oz will see it...but you know what?? i wish they could see this one too...

Great post! This allows diabetics don´t feel alone with this disease ...
Thanks!

thankyou so much for your post Kerri. I look forward to reading your blogs, and they are always inspirational. I live in Australia and I am not part of any diabetic groups, so sometimes I feel alone as I don't know anyone personally with type 1 diabetes. I am so glad I came across your blog. you have such a great gift in the words you wrtite so Thankyou.

Great post Kerri. It is like a big virtual group hug. :-)

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