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Posts from the ‘Diabetes Advocacy’ Category

Unraveling the UnConference.

Thanks to the vision, dedication, and determination of Christel Aprigliano, the first Diabetes UnConference came together in Las Vegas last weekend.

“Wait, what?  I didn’t see anything on Twitter or Facebook!”

And that’s because there was a social media blackout on the whole conference during the actual course of it.  No live-Tweeting, no live-blogging, no live-streaming.

As my daughter used to say: “nuffin.”

Which is something I admittedly didn’t agree with, at first.

I always view conferences, both professional ones like the American Diabetes Association Scientific Sessions and the more community-based ones like TCOYD and JDRF‘s TypeOneNation, as an enormous privilege to attend.  Travel, lodging, and time for conferences can be a huge barrier to attendance, and as someone who has had channels of support that make it possible for me to attend a lot of meetings throughout the year, I feel like it’s part of my “job” to report back on how things went.  And not in a wicked journalistic sense (because my tendency to curse remains what it is and sometimes I don’t take fastidious notes but instead drink copious amounts of coffee), but in a man-on-the-scene sort of sense, trying to help fill in some of the blanks for people who aren’t able to make that particular meeting.  It’s not right that everyone can’t be everywhere they’d like to be, and the diabetes community is good about paying things forward.

[And yes, this is where my disclosure comes in.  In an effort to open up more of Christel's conference budget for crucial things like scholarships, etc., Animas was asked to sponsor my attendance as a facilitator, and they thankfully jumped on board.  I'm grateful for my personal and professional relationship with Animas and the support they have shown to me and to the diabetes community as a whole over the past five years.  For more on my relationship with the company, you can read my disclosures.]

But having a social media blackout was a good thing for the UnConference, even though it kept the conference closed.  Why was that good?  Because there was a lot of vulnerability at this conference, and it wasn’t on display for people to comment on, or document, or send out to a slew of social media followers.  Some folks in attendance were meeting fellow people with diabetes for the first time ever, and others were reconnecting and enjoying established relationships.  People talked about how diabetes affected their lives, and the things that made them feel a slate of emotions – guilty, triumphant, and all the ones in between.  To let the discussion flow without feeling the need to document it was a nice change of pace, and personally kept me in the moment.

Which was helpful, because attendees didn’t share all their “sames.”  It wasn’t an exercise in group-think, where people all said they reacted similarly to diabetes scenarios.

For example, when we were talking about burnout, many people shared their personal experiences with diabetes-related burnout, and others said that they haven’t ever experienced burnout.  I thought that was a powerful moment, because while there might be majority opinions on certain topics, the whole point of the diabetes community is that we are strong in what unites us as well as what makes us different.  One size doesn’t fit all, and neither does one emotional response.  I loved these moments because they woke me up and reminded me of the diversity of our experiences.

While I wish there could have been more people in the actual room, I know that access to conferences like this will come in time.  To that same end, half of the people in attendance were people I hadn’t met before.  It wasn’t the “same crew,” which I thought was powerful and helped shake up some of the “same scene, same people” vibe that has a tendency to dominate at a lot of diabetes conferences.  But what really resonated for me is that people felt comfortable and confident during these discussions, and I think the social media “blackout” contributed to that comfort.  Scrutiny was at a minimum and people could concentrate on being present.

Which is why, at the end of the conference when we were asked to write one word on a 3×5 to describe how we felt about the sessions, the word I wrote was “heard.”

Blog posts about this UnConference might be scarce, but to me that scarcity makes sense.  It was about sharing in the moment, not recapping after the fact.  Maybe, for once, what happens in Vegas stays there in specifics and instead makes it back into the community in the form of increased discussion, support, and connection.

 

McDave from the Plane.

“Were you saving these seats for us?”

I travel regularly for work, and because I’m usually on the road without my family, I end up in various discussions with strangers to fill the time.  Since my days as a breakfast waitress in college, I’ve always enjoyed those snippets of single-serving conversations.  Airplane travel can offer insight at 30,000 feet (sometimes from the pilot).

“Yes.  I’ve been waiting for you guys for hours,” I replied, standing up so that the couple could join me in row 9.

This was my introduction to Dave and his lovely wife.  Throughout the course of the flight from Orlando back up to Providence yesterday, I spent some quality time talking with these two and over-sharing to a frightening degree.

We talked about flying, and how none of us cared for it.  We talked about the Patriots and how mother  (and his wife) are hardcore fans.  We talked about how his daughter has been an extra in several films and TV shows.  And we talked a lot about food.  After a discussion about what I do for work and what brought me into the diabetes space (see also:  diagnosed 28 years ago, felt alone, founded a blog, found some friends), Dave admitted that his own diet could use a shift in priorities.

“We could eat better,” he said.

“We could eat a LOT better,” his wife said from the window seat, smiling ruefully.

“Everyone could eat better, but our fast-food society doesn’t exactly make it easy.  You have to go above and beyond to make sure you aren’t eating junk.  Junk is mainstream!  Think about how screwed up our perception of ‘breakfast’ is; we dump sugary syrup onto pastry-esque pancakes and call it a healthy meal.  That’s not a meal … it’s dessert!”  They nodded, and I realized I was on a mile-high soapbox.  “I’m so sorry.  Food stuff makes me ranty sometimes.  Like when I think about the kinds of foods marketed towards my daughter.  Chicken nuggets and french fries and sugar cererals.  Stuff is gross.”

“So she’s never had a Happy Meal from McDonald’s?” asked Dave, half mocking me, half actually asking.

“She’s had McDonald’s food two or three times in her life, but that’s it.  And no, she’s never had a Happy Meal.”

He laughed.  “You’re missing the chance to make her happy!  But not the food – I get that you don’t want to give her the food.  I used to make my own Happy Meals for my daughters.  I’d take a toy that they hadn’t played with in ages and pack it in with their lunch.  Instant Happy Meal!”

“That’s a good idea.  I like that.”

“Yeah.  Now you can write about it in your blog, right?  I want to be in there.  People would want to read more about me.”

His comments made me laugh.  “Sure.  I’ll write about you.  But the blog post has to have some kind of resolution, right?  Where we both promise to make changes and then we hold one another accountable?  Or is that taking it too far?” I asked him.

Dave thought for a minute.  “I can do that.  Listen, my wife and I will make a change.  We promise to eat something green with every meal.  A vegetable, like spinach or broccoli or squash.  Except that squash isn’t green, so we’ll have to be flexible with the color requirement.  But a vegetable with every meal.”  He made a fist and jabbed it towards the air with conviction.  “A vegetable with every meal!”

“And I promise to make my kid a happy meal, like the one you described.”

He handed me his business card and I promised to send him a link to the post once it was live.  (Hi, Dave!)  The plane landed and we all went our separate ways, resolute in our decision to make positive changes.

This morning, as I packed Birdy’s lunch for preschool, I put one of her small, forgotten toys in the lunch bag, alongside her healthy food options (and a crappy drawing of Loopy drinking a mug of steaming coffee).  I wondered what kind of vegetable Dave managed to work into his breakfast that morning, and smiled.

What’s the point of going through life without ever making eye contact, or making a connection?  Single-serving or not, I’m better for having sat next to Dave.

Earned.

This morning, the Joslin Clinic shared a photo of Dr. C Kenneth Gorman, who was awarded the Lifetime Achievement Award for living 80 years with type 1 diabetes.  He’s one of five people to have received the medal, and the first Canadian (eh?).

Here is this wonderful man, medal and all:

joslin medalist

[From the Joslin Diabetes Clinic Facebook page]

Dr. Gorman redefines what it means to “earn” a medal, in my eyes.  Thank you, Joslin, for letting us know about Dr. Gorman and to Dr. Gorman for inspiring me to keep working towards my 80 year medal.


Happy Birthday, Dr. Seuss!

Happy birthday to Dr. Seuss!  He’s always been one of my favorite writers to read, recite, and then parody as needed.  In homage to the good doctor on his birthday, I’m revisiting a poem I wrote called A Human’s Resilient, One Hundred Percent! Because we are resilient, damn it.

*   *   *

Sighed Panky, a lazy panc deep in the gut
“I’m tired and I’m bored
And I’m stuck in a rut
From making, just making insulin every day.
It’s work! How I hate it!
I’d much rather play!
I’d take a vacation, or a long nap
If I could find someone to do all this crap!

If I could find someone, I’d kick back and chill …”

Then Panky thought, “Could Kerri be up for the thrill?”

“Hello!” called the lazy panc, smiling her best,
“You’ve nothing to do.  Does this sound too strange …
Would you like do the work I do for a change?”

Kerri laughed.
“Why of all silly things?
I haven’t islets or enzymes or things.
ME do your job?  Why that doesn’t make sense!
Your job is make insulin!  The thought makes me tense.”

“Tut, tut,” answered Panky.  “I know you’re not me
But I know you can do this.  Won’t you hear my plea?
Just pick up that needle and draw up the dose.
Once insulin’s flowing you won’t feel morose.”

“I can’t,” said the Kerri.
“PL-E-ASE!!” begged her panc.
“It won’t be too hard, kid.  Sorry to pull rank.
But I’m leaving regardless if you raise your voice.”

“You’re a jerkface,” said Kerri.  “Not to give me a choice.

I’m unsure how to do this. Details are the devils!
How do I keep steady my blood sugar levels?
What do I do? Can you leave me instructed?”

“You’ll figure it out,” and the panc self-destructed.

“The first thing to do,” murmured Kerri,
“Let’s see.
The first thing to do is to prop up this Me
And to make ME much stronger.  This has to be done
Because diabetes can weigh an emotional ton.”

So carefully,
Hopefully,
She searched, unimpeded
For the resources, tools, and support that she needed.

“I know that there’s life found after diagnosis.
It’s good and it’s worth it. That’s the prognosis.
I meant what I said
And I said what I meant …
A human’s resilient,
One hundred percent!”

Then Kerri, with peers and insulin by her side,
Well she tried
and she tried
and she tried
and she tried.

She kept at it for decades
Despite feeling perplexed.
It requires work one day,
Again on the next.
It sucks! Then it doesn’t!
But Kerri remained sure,
“My life’s worth this effort,
(Though I’d still love a cure.)
I wish Panky’d come back
‘Cause some days I’m so burnt.
I hope that my body thrives on the things that I’ve learnt.”

But Panky, by this time, was far beyond near,
And was dormant for good now. Diabetes was here
And was staying, so Kerri, for better or worse,
Had a pump on her hip, glucose tabs in her purse.

Diabetes is constant, day after day.
But the life in its wake is still good, plenty yay.
And even on days when the Stuff is Way Blah,
Life with disease is not life without Awe.
“It’s not always easy. Diabetes might test me.
But I’ll stay on task and I won’t let it best me.
I meant what I said
And I said what I meant …
A human’s resilient
One hundred percent!”

Some days it is simple. Some months are real hard.
Diabetes is something you can’t disregard.
But a panc on vacation doesn’t mean that you’re broken.
“You can still do this.”

Truer words never spoken.

 

[With apologies and thanks to Dr. Seuss,  this is in homage to Horton Hatches the Egg.]

Spare a Rose: 2015 Results.

This year, the total raised for IDF’s Life for a Child program through the Spare a Rose, Save a Child campaign was $24,229.

We aimed to raise money and awareness for kids in developing countries who are without resources and insulin, and we raised money.  And awareness.  For the third year running, the diabetes community as a whole pledged their time, money, and outreach to touch the lives of people we’ll never meet but who have a chance to thrive based on our willingness to give.

If that’s not inspiring, I’m not sure what is.

In these beautiful images created by Mike Lawson from Diabetes Hands Foundation, you can see how far that money goes.

[More on the Spare a Rose 2015 results here]

Thank you, each and every one of you, for your support for Spare a Rose.  Your blog posts, Tweets, emails to friends and family, you reaching into your own pocket to share just a little so that others can continue to live … every little thing you do, matters and resonates.  Spare a Rose has closed out for 2015, but the influence of our collective contribution will last a lifetime.  And will provide a lifetime.

Our global community thrives and continues to inspire, thanks to all of you.

 

Looking Back (and Forward): Diabetes Haiku.

During this week’s #DSMA chat, a sidebar discussion about diabetes haiku broke out, and in a matter of seventeen syllables, things took a poetic term.


I was reminded of a post from a few years ago about insulin haiku that still rings true because I’m clearly still hooked on the stuff:

Such a small bottle
with such a huge influence
on my whole damn life.

In a carefully orchestrated combination of syllables, what would your diabetes haiku say?

Knowledge Gaps.

I wish I knew more about a lot of things.  Like dinosaurs.  (Mostly because Birdzone keeps asking me about them and what their names are and what kind of foods they liked to eat, and I’m not as brushed up on my dinosaur details as I was back in second grade.)

But there are things I truly wish I knew more about, in a diabetes sense, and I’m eager to learn.  One theme that’s come circling back around every few weeks is that of advocacy and influencing policy decision makers in Washington, DC.

This “lets all go to Washington!” advocacy, admittedly, makes me feel like an idiot because my knowledge gaps in this arena are obvious to me.  I know how to tell my diabetes story, but I don’t know how to made that story resonate for decision makers.  What makes issues matter to people?  What’s the best way to reach folks in policy?  How can one voice make a difference, and – more importantly – how can a collective of voices make the biggest difference?

We, as a community of people touched by diabetes, have the opportunity to learn from one another.  And I’m excited to do that, because I need to learn.  I want to be more effective as an advocate and for me, part of that process means closing some of my personal knowledge gaps.  (Here’s where programs like Masterlab are already so effective, and could be even more so.)

What do you want to learn (more) about?  Once we start minding the gaps, we can start filling them in with good information.

I want to learn more about effectively influencing health policy in a way that takes the best possible care of people with diabetes.  I want to learn more about how to make the most out of the healthcare I have access to.  I want to help empower myself to live well with diabetes, and to assist in empowering others.

Sparing roses helps.  It’s simple and makes sense to me.  But what else is there that can be done?

I seek education, dedication, and determination to help me find out.

(And yes, I’m sticking it into a blog post as a way to keeping myself accountable.)

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