Balloon Animals

Being the new guy on the volunteer staff at CWD’s Family Support Weekend, I made a point to introduce myself to as many of the other staff as I could.

The night before the opening session, I crossed paths with Neil Benchell, who helps keep the tween’s entertained. I’d met his wife, Jill, earlier in the week (Kerri & I were doing a session with her on Friday). I can’t remember where I heard (or read) that Neil does magic tricks for the kids, but when I introduced myself I said that I was going to learn how to pull a quarter out of his ear or something the next time I saw him.

Fast forward to the next morning at the breakfast. He walks up to me, hands me a balloon, tells me to blow it up, then walks away. As he’s leaving, he says “let me know once you get that blown up”. I figured that he had to be up to some sort of mischief…

I gave the balloon a quick once over, just to make sure it wasn’t coated in jalapeño pepper or something like that, then tried to blow it up. I could not do it. I blew with all I had, but that damn balloon wouldn’t budge. I sat down at my table and figured there must be some trick or technique to it. So I googled it.

The top two google results were 1) use a pump, or 2) do six weeks of lung strengthening exercises. Right then, Neil sits down next to me, pulls another balloon out of his pocket, blows it up and transforms it into a parrot.

I asked him for another, different, balloon, and went at it again. Nothing. I was eventually able to blow up a couple of balloons, but I had to watch Neal do it a couple more times. He had some subtle technique involving stretching the balloon, releasing it, and blowing at a very specific time during the stretch and release.

It took me about two hours to create those masterpieces in the picture, with 95% of that time spent blowing at (not blowing UP) the balloons. I’ve never felt so incapable before in my life. Well, wait…I did feel pretty incapable of hitting a whiffle ball

We Want The Same Thing

One of the revelations I had here with the Children With Diabetes (CWD) family is that both CWD and the Diabetes Online Community (DOC) want the same thing, and we both have the same problem.

We both want to help people with diabetes, but that’s not exactly what I’m talking about. That’s the obvious part — wanting to help people with diabetes. Specifically what I mean is exposure. Not “exposure” in the way of marketing speak (growing brands and name recognition, etc.). I mean finding ways to give people a taste of the magic.

In the DOC we talk often about reaching those that don’t know about us. We all know how much the DOC has helped us, and we also know that we are a very small portion of those living with diabetes. We talk about ways we can bring the love and support of the DOC to all those who desperately need help living with diabetes, but don’t know we are out here for them.

CWD is also a lifeline for so many. They serve a lot of people through their website, but also have the challenge and privilege to put on a handful of huge conferences. The conferences are life changing events. Life. Changing. But they can’t reach everyone that needs them either (every single person living with type 1 diabetes).

For both of us, some of the challenges are the same. Some are much more complicated. Some might be easy, but we don’t have the right pieces of the puzzle yet, or don’t even know where the puzzle edges are. Some challenges might be impossible, and some might be much easier than we know.

I’m happy that the relationship between the DOC and CWD is constantly growing stronger. It should – they are good folks doing good things, and so are we. We can both find ways to help each other. If you think about it, finding ways to help is a specialty of both groups, right?

We have been given a huge opportunity on two fronts: building content for adults with type 1, and singing praises for the DOC. This is a big deal. I hope that everyone in the DOC recognizes the significance of these first steps, and responds to the CWD family with an abundance of love and support. Like we do.

Whiffle Ball With Joe

Day two with the CWD faculty has been great. I keep meeting new people, and I’m getting to spend some time with people I know of, or know about, but up until now didn’t know personally. I love all of them so far.

There’s that instant respect and understanding when you are talking to someone who “get’s it”. It’s an unspoken subtle vibe that says “I understand life with diabetes, and I know that it can be hard, and that it can be confusing and frustrating, and that diabetes is diabetes.” I could talk with them forever, and still want more time & conversation.

The morning was spent meeting and talking business, and even that was exciting and informative for me. We spent the afternoon team building (a.k.a. playing on the beach).

I got involved in a very serious whiffle ball tournament against Joe Solowiejczyk and his crew (Neal Billetdeaux, Tim H., & Monica L). Let me tell you – Joe is pretty bad at whiffle ball. Let me also tell you – I’m even worse than Joe!

It was good that we could keep each other company on that end of the whiffle ball talent spectrum. I know I felt better not being alone anyway.

On a more serious note, not being alone is an important part of why the conferences and events that CWD put together are so important. I’ll get into that more, but not until later this week.

To end the afternoon on the beach I tried my hand at a weird game that the kids of CWD taught me. “Wah wah” is what it is called, and I can’t even begin to describe it. But let it be said that I held my own, even beating out a bunch of pro’s, and earned myself a little bit of street cred. I’m pretty sure that I saw Jeff Hitchcock trying to distract me taking pictures, so I’ll get them online as soon as he gets them off his camera.

Family Support Weekend

Marissa Hitchcock and our Diet Coke.

Marissa Hitchcock and our Diet Coke

I’m spending the week down in Florida with the CWD family. Later this week will be the Family Support Weekend. Kerri and I are getting aquanted with the staff and will be getting our feet wet with a few presentations.

There is something special about sharing time with people who are devoted to helping other people. It’s infectious. It’s inspiring. It makes me want to do so much more. Many, like myself, are volunteering our time and expertise to help make a difference for people. I feel lucky that the people I’m helping are those living with type 1 diabetes, and specifically us adults living with type 1 diabetes.

I’ll post more this week as I can, but for now I’m heading to sleep and trying to forget that it is 36 degrees here (in FLORIDA!). I thought I left all that cold weather back in Minnesota…

CWD Friends For Life – Mountain Climber!

Sorry folks, I’m not done gushing about CWD Friends For Life.   I left off with Jay Hewitt on three TV screens, and some evening basketball with Gary Scheiner.

I had just as much trouble choosing sessions on Friday as I did the day before.  I’m a big fan of Tom Karlya, also known as “Diabetes Dad“, which made my morning decision that much easier.  He and Kimberly Davis, Director of Federal Affairs at Johnson & Johnson, did two great sessions on “How to Talk to Your Congressperson”.  It was fantastic.  They were fantastic.

Did you know that in Province, RI it is illegal to sell toothpaste and a toothbrush to the same customer on a Sunday?  Or that in North Dakota it is illegal to go to bed wearing shoes?  Or that in Kentucky it is illegal to transport an ice cream cone in your pocket?  In Dayton, OH only men can be hired as hotel bellhops.  I could go on for pages with these.

These are laws.  Someone cared enough about these ridiculous things that they spent a lot of time and energy convincing their local Representative to sponsor the bill and work it through the process.  It takes a lot of time and energy from a lot of different places.

Don’t do nothing! If someone cared enough about those silly laws, you care more about diabetes. Tom drove this point home with such passion.  Don’t do nothing.  I was a fan of Tom before hearing him speak, after seeing his passion in person, I became his number one fan.

I spent part of the afternoon listening to Rick Philbin talk about sports and pumping (titled “Finding the Right Mix”). It was another great session that I got a bunch of useful information from.  Great presentation from Rick, and some awesome questions from the crowd.

I think all of the excitement finally caught up with my buddy Chris Bishop though:

The closing keynote speaker was Will Cross, who has done some amazing things while living with type 1 diabetes.  He has walked (yes WALKED) to the North and South poles, and has also climbed Mount Everest.  He gave a great closing keynote, and stuck around afterward to chat and answer questions.

Collage of Will Cross pictures from CWD FFL 2010

It was another amazing day for me, full of inspiration and incredible memories.

“Diabetes Rising” by Dan Hurley

I first heard of Dan Hurley and his book, “Diabetes Rising“, over at Amy’s site (Diabetes Mine).

She did a two part interview about a year ago (Part 1, Part 2), and there was something about what Dan said that pulled at my emotions.

He says about his approach to the book:

… Even with this best medical advice, I feel that
the ‘just try harder’ approach is not going to work for a lot of people.
If you’re very educated, motivated, and have a good attitude, you can
kind of stumble your way through it. But obviously tons and tons of
people don’t have all those attributes… something else is needed to help

How many times have you felt you needed to “just try harder?”  Or worse yet, been told you “just need to try harder?”  I feel that way almost all the time!  Yet I’m always mentally exhausted from it all.  Try harder?

After Amy’s interviews the book fell off my radar.  The book wasn’t available for order at that time, and my attention span just didn’t last.

While down in Florida for the Roche Summit and CWD Friends For Life Conference, Lili and her husband told me they bought a copy of his book at his booth.  I said “wait – you mean he’s HERE?” and made a dash for the booth.  It was weird for me to say “Hi Dan, Uh… I’m a big fan, but haven’t actually read your book yet…”

I told him that I had seen the interviews on Amy’s site and they had really piqued my interest.  He was extremely pleasant.  We chatted for a minute, he signed my book, then I grabbed a picture with him.

"Dan Hurley - Diabetes Rising"

I wasn’t sure I’d like the book.  I figured with a name like “Diabetes Rising” it would be all about type 2 diabetes and the panic the world is in.  That wasn’t the case at all.  There was a lot about both type 1 and type 2 diabetes.  Dan is a very scholarly looking fellow, complete with a bow-tie and all, which set me up to expect a very dry and technical book.  When I got to the title of the first chapter, “Pissing Evil”, I smirked a bit and had a feeling that I would enjoy Dan’s style.

There were a couple of paragraphs that just shouted to my soul, and I
asked Dan for permission to quote them here.

The Computer Cure – The Quest for an Artificial Pancreas
In Chapter 10, Dan covers some information about his experiences being connected to an artificial pancreas for a day.  He’s talking with Marc Breton, PhD, the systems engineer who was designing the software to control the artificial pancreas.  Dan asked Marc “why, from his perspective as a programmer, is controlling blood sugar so maddeningly complicated even though it involves just two variables, insulin and sugar level?”  Marc came up with an almost perfect metaphor to explain it (italics mine):

The glucose you measure with a continuous monitor was accurate fifteen minutes ago.  The insulin you take does not start acting for twenty minutes, has a peak of action around forty-five minutes, and it continues to act for up to three hours.  So you are acting on out-of-date data, and you’re using a mode of action that will only kick in much later on.  It’s like you’re driving a car down a winding road — but you aren’t able to see that the road turned until you are fifteen yards past it, and turning the wheel will have no effect for two hundred yards more. If you’re driving a car like that, you’d better have a good map.

Two sections later in Chapter 10, Dan is now hooked up to a closed-loop trial system:

At 11:07 P.M., watching Seinfeld, I had a sudden urge to go running down the hall, skipping and yelling, in celebration of not having to worry about my insulin and sugar levels — of being, for one night only, magically freed of my diabetes.  And then I felt myself close to tears, thinking what a pain in the ass, and how phenomenally distracting, it is to be constantly worrying about my goddamn sugars, instead of focusing on my work and my family and my friends and my life.

I found myself near tears just from reading that – but am admittedly a softy when it comes to the emotional prices we all pay living with diabetes.  There was plenty of other great writing before and after chapter 10, of course, but these two quotes really pulled me.

I really enjoyed reading Dan’s book.  His writing style entertained me, and spoke to me beyond the words on the page.  There’s a certain wisdom that comes from living a long time with something like diabetes, and I got a lot of that from everything Dan shared.

CWD Friends For Life – The Primer

I have a million things I want to talk about regarding my first ever Children With Diabetes (CWD) Friends For Life (FFL) conference.  I’ve been trying to sort it all out in my head before starting to write about it, but that’s not working for me.  I’m just going to jump in and get started.

I am really hoping to keep my posts about it short and sweet, so I’ll cover little slices or aspects of it each time.

Giving Thanks
Before I get too far into my CWD FFL experiences, I need to give thanks to the people who made it possible for me to attend.

First on my list is my dad.  My dad has been my number one supporter, and encourages me to chase my dreams.  I can’t say enough about how motivating it is to have his support and dreams right there with me.  He helped me cover expenses for the extra nights at the hotel and all the other “little” expenses that come up while traveling.  Thanks dad!

I also need to thank the group at Roche who coordinated the 2010 Roche Social Media Summit.  They scheduled it at the same hotel & conference center, and coordinated the timing of it so we were done by the time the FFL conference started.  Without them getting me down there for the summit (covering travel), I never would have been able to afford getting there for FFL.  Thanks to Todd, Lisa, Rob, and everyone else at Roche who made that possible for me.

What I Knew Going In
I think I’ve been aware of Children With Diabetes for a long time, and recognized them as a group of parents helping families with type 1 diabetes.  I was never much involved with the online activities and forums though, maybe because I was already “grown up”?  I also didn’t get too involved with the online community around diabetes back then – times were different, you know?  In my head I always saw them as a group of good people doing good things.  I respected them.

Looking back, I sure wish I would have gotten involved a LOT sooner.  The people who make CWD who they are, and all of the families that participate in the forums and local events are all amazing people.  Amazing people working to help everyone with type 1 diabetes.

I spent almost five years working at Smiths Medical with the Cozmo insulin pump.  Through my time there I learned that this conference was a big deal for companies interested in marketing to people with type 1 diabetes.  This conference was the one that Smiths put the most effort behind each year.  My experiences at Smiths helped me see that while the name of the organization behind the conference is “Children With Diabetes“, that really means that most everyone there will be touched by type 1 diabetes and will be taking insulin.

Sounds like my type of crowd.

This Place Is HUGE
We were busy with Roche most of the day Tuesday, but I took advantage of some of the breaks to head down and check-in with CWD.  Walking towards the registration desk, the sheer size of this place started to sink in…


There is a corner way down there, and even another hallway about this long.  Incredible.
Little did I know, the epic size of things wouldn’t really register until Thursday morning…