Monday, July 22, 2013

Another Hiatus, Ended Better Yet

Spoiler alert: this is a sequel.  It is a welcome follow-up to a previous post from five months earlier, which actually was my last substantive post until now.  You see, there's this pattern that is emerging, wherein I feel moved to write a blog post immediately after Children With Diabetes conferences.  Or maybe it's after crossing paths with Ed Damiano, but I'm getting ahead of myself.

I've just returned from CWD's Friends For Life 2013 conference in Orlando, Florida.  Last year was my first time attending FFL, and I resolved right then and there to do everything possible to make it so that I never miss another.  The biggest mistake we made last year was staying a couple of days after the conference to go to theme parks.  We hadn't anticipated how empty the hotel's conference center would be, nor how quickly the next convention would move in and start setting up (it felt like they were desecrating our home while we still lived there), nor how thoroughly depressing that would be.

So this year, we added a couple of days at the beginning, before the conference began.  It was on one of those mornings that I was standing in line with my family, waiting to be seated for breakfast at Pepper's Market, at Disney's Coronado Springs Resort.  Up walked one of my favorite PWDs, Natalie, whom I hadn't seen since CWD's Focus on Technology in February in Crystal City, Virginia.  Hugs all around, and we began talking, and didn't really stop talking.  Before long, we got to the topic of Ed Damiano and the Bionic Pancreas, how she'd like to participate in the research study, and how I felt that seeing that one lecture changed my life. We were both talking at the same time, ever so enthusiastic and ever so passionate (which is Natalie all the time as far as I can tell, and me not nearly as often). I was standing next to a pillar at the restaurant's entrance and she was facing me, as people were lining up behind us and we weren't moving forward with the line as we should, nor taking the table offered to us.  So I didn't see who was approaching when she turned to the side and said to the approaching group "No way! We were just talking about you!" and then Ed Damiano rounded the corner and stood right in front of me.

"Ed, have you met my friend Sean?  He's a family physician with type 1 diabetes," said Natalie, as I struggled to maintain a shred of composure.

I shook his hand and told him "I just wanted to say thank you for all that you're doing and all that you've done.  I saw your lecture at CWD's Focus on Technology in DC in February, and it blew me away.  I've been to a lot of lectures since medical school, and I'm really not the 'best thing ever!' type, but I have to tell you, with complete sincerity, that your talk was the best lecture I've ever seen.  After last year's FFL I started to blog, thought I would blog a lot, but only wrote two posts and then stopped.  Seeing your lecture, months later, finally inspired me to write another post."

"You wrote a blog post about that?  What was it called?" he asked me.

I struggled to recall the name, which eventually came to me: "Long hiatus, ended well," I replied.

"You wrote that?!" he asked, stepping back as his eyebrows registered surprise, "I've been dying to meet you!"

Then it was my eyebrows' turn to rocket to the ceiling.  As they did, also to my surprise, his daughter stepped toward me, opened her arms, reached up, and gave me a tight hug.

As I regained my waning composure, I managed to say something like: "You've been dying to meet me? That's ridiculous. I've been dying to meet you!"

As we talked some more, he invited my family and me to dinner with his team and their families the evening before his lecture.  Reservations for a group of 35.  I was shocked and flattered to be included.  We exchanged phone numbers so he'd be able to reach me with dinner details.

We finally managed to eat breakfast, and then it was off for a day at Epcot.

*          *          *

Fast forward to Wednesday, after the grand opening of the exhibit hall.  Ed texted me to meet at his Bionic Pancreas booth, so everyone could walk over together for dinner.  Some of the families didn't stay since the reservation was so late, but it was still a large group, at multiple tables.  Thankful for Ed's gracious invitation, I took an empty seat at one of the tables, just glad to be there, and expecting a pleasant dinner with some of his team members.  I was shocked all over again when Ed sat down directly across from me.  And then, to heighten the already unparalleled surreality, he matter-of-factly laid down all of the pieces of his experimental bionic pancreas device right on the table between us, where it sat the whole evening, except for when he picked it up to take it apart and show me its insides.

We talked and shared over a two and a half hour dinner and sparkling water. I learned more about his research, his family, his team, his plan, and his charm. And, like just about any other parent at CWD, he made me feel very much at ease in talking with him and sharing ideas.  At one point he mentioned a new feature they were considering, and I felt compelled to offer my [differing] opinion.  While I was talking, I was conscious of a part of my brain saying "Don't tell him his business!"  But I felt strongly, he listened closely, and in the end he said "That's a great point. I hadn't thought of it that way. We'll really need to look at that."

I spoke with other team members sitting next to and across from me as well, from a pump designer, to a pediatric endocrine research fellow, to Firas El-Khatib, the genius behind the controller algorithm and computer code that run the magic system.

It was, without a doubt, one of the most incredible, amazing, and unexpected experiences I have ever had.

Around midnight, I eventually made it back to my hotel room.  The kids were fast asleep, and my wife roused enough to make sure it was me who was entering the room.  I couldn't contain my excitement, and in a semi-coherent flurry of mostly complete sentences, I tried to recount some of the highlights to her, but I kept interrupting myself as I went on and on.

I eventually went to bed, still not believing the day I had just had, and looking forward to what the next day would bring, including Ed's formal presentation to the conference attendees.  The talk I had attended five months earlier had included results from his 2-day experiments, before the newest study had started.  Ed had just told me at dinner that I was in for quite a surprise at tomorrow's talk, when I'd get to see the 5-day data from the newest study.  He was pretty sure I'd be pleased.  (Of course, he was absolutely right.)  As I finally fell asleep, I was vaguely aware of the enormous smile that wouldn't leave my face.

*          *          *

Back to that day at breakfast where I first met Ed.  I could hardly eat.  I had so many thoughts and feelings ricocheting around I didn't know what to do with myself.  I could have gone home right then and there and the conference would already have been an enormous success.

CWD FFL is just that way.  The amazing happens.  The unexpected happens.  Lives are changed.  Energy is found, and then it is focused.  Hope is reignited, fanned, fueled.

And the conference hadn't even started yet.

Which is another sequel, all to itself.


  1. Awesome story! Thanks for telling it. It's tough to not appear starstruck when in the company of someone who can have such profound effects on our lives. Looking forward to more of your posts!

  2. Glad to see you writing again & what a fantastic story!

  3. Also, I can't wait for the #cwdffl13 blog post sequel /sequels - And I have no doubt that Mojitos will make an appearance !!

  4. Ed Damiano, man. He just does that to people. Haha. Definitely a cult hero or something. Oh, and Firas is one of my favorite people. In fact, their whole team is awesome. I haven't been in the clinical trial (yet) but I covered them for a DiabetesMine story and to date, it's probably my favorite.

  5. What a lovely story! Makes me want to attend CWD. I hear you on that post-conference or event blues, when you have to realize that life moves on...

  6. I am a new T1D via pancreatectomy (pumping & CGM) so I am especially excited about every single bit of information I can read about the bionic pancreas. I know that for me an electronic device will be my "cure" and I am beyond elated about the advances just in the past year. This is a very exciting time to be a PWD! My heart was racing reading this blog bc I can only imagine the size of the cloud you were walking on during CWDFFL. Things like this are yet another reason to make me say, "I want to go next year". Thanks for sharing!

  7. Sean - it was SO GREAT to finally meet you at FFL! Had a blast, and loved reading this story about your meetup with Ed. Certainly a brilliant one there. Thanks for sharing this, for being who you are, and it's great that your back into the blogging world! Looking forward to keeping in touch.

  8. Such a great story! Very happy for you and thanks for sharing! I met my T1D hero, Bobby Clarke (Philadelphia Flyer and T1D), as a kid. I freaked out and started crying. Glad your experience was far less embarrassing.

  9. It's hard to picture an adult any giddier than you were before that dinner :) Such a great experience, and, as you say, the sort of kismut that makes FFL so exciting. So all we have to do to keep this blog a-rolling is send Ed to your house every few days?

  10. This post totally sums up the feeling of magical coincidences and encounters while at any CWD event. :-)

  11. I love when this happens. I met Ed some months ago in Boston. What a great guy. I so wanted to get a trial of the AP, but I'm allergic to aspirin which you have to take for the trial period.

    What did you think of the Focus on Technology event? Worth going to?