Tuesday, July 12, 2011

CWD FFL - That Feeling.

Every night felt like one of those great slumber parties you have when you're a kid, where you want to stay up as late as you possibly can and giggle until your sides hurt.

You enjoyed each moment as best you could, but never quite fully - because you were ever cognizant of how fleeting this time together would be.

photo credit: Jacquie

You hugged and cried and laughed with family, who were technically strangers. Our blood may not have been related, but our pancreases (pancrei?) belonged to the same club.

photo credit: Sara

We all wore the Green Wristband of Significance. We swam with our pumps and sensors and IV tape and scar tissue and bruises out for all the world to see. We did synchronized swimming. (Okay, we just did the Cupid Shuffle while in the pool - but that counts!)

photo credit: Sara

The Diet Coke was, for the one-time price of $14.90, limitless. (And seemed to cause some dehydration - but that's another story.)

There were free cupcakes at one point.

High and low blood sugars abounded. Emergency supplies were exchanged. Humalog pens were lent out. The Florida humidity meant a sweaty early morning walk to the convention center each day. Rollercoasters made us queasy.

Every day was so imperfectly perfect.

original photo credit: Martin
How do you sum up something like that? How do you quantify it? How do you explain to anyone without diabetes what that feels like?

And how cliché is it if I say that I really do feel like I have Friends For Life?

When I signed up for the Children With Diabetes Friends For Life conference, I did so with a tiny thought in the back of my mind: With a name like that, I hope there's a place for an adult like me. This was my first CWD conference, and even though I knew adults with type 1 who had gone before (and enthusiastically recommended it), I was cautious about getting too excited.

2011 was the first year that CWD had an "adults with type 1" specific set of sessions, and so I didn't set much in the way of expectations of what those sessions would be. Truthfully, my main reason in wanting to go was to get to hang out with that great assembly of people for 5-ish days.

I set my expectations way, way too low.

I thought that some sessions had good value, like the "Finding Support Through Social Media" session with Scott and Kerri - it had a casual feel to it, and those of us who were proficient in the subject matter could lend advice and ideas to those who were new. Kerri's session on "Diabetes and Pregnancy" also was a favorite - except for those awkward moments when a man would try to walk into the session halfway through (were we so quiet, they thought the room was empty, maybe?).

I thought that some sessions were pointless, like the Novo Nordisk sponsored "Grown-ups with type 1" hour. The facilitator didn't seem to have any working knowledge of life with diabetes, and it showed. Painfully. ("Do you try to avoid lows?" "Raise your hand if your last A1C was under 7!" It was totally uncomfortable, and didn't really seem to accomplish much beyond providing some market research findings for the pharma company sponsoring it.)

The session that had the most punch for me was the "Avoiding and Overcoming Diabetes Burnout" session with Dr. Jill Weissberg-Benchell. (She is both a pediatric psychologist and a CDE, and "works regularly with children and teens and their families to facilitate coping with diabetes and other chronic conditions". And, really, I've never met a person who so totally "got it" without "having it" themselves. She is a rockstar.) What started as a guided discussion on managing the day-to-day of diabetes turned into one big group therapy session. Fifteen of so of us adults with type 1 sat in a circle, finishing each other's sentences and passing each other the Kleenex. It was... beautiful.

I know that won't sound like a good time to some, but it was exactly the honest, gritty conversation I needed to have. And with just the kind of people I needed to have it with.

That feeling - the one where you feel understood in some unspoken way; where you feel like you are "among your kind"; where you fear your heart might explode from the joy it's holding? It was one of the best gifts FFL could have given me.

* * * * *

Disclosure-y stuff: The CWD people did not ask me to write about the FFL conference, nor did they provide any compensation for my attendance. All expenses associated with this trip were out of my own pocket, and as always, all opinions are my own.

14 comments:

  1. Great post Kim. There is so much magic that happens at the Friends for Life conferences, that it seems only appropriate that they happen at Disney. :-)

    ReplyDelete
  2. Great write up, Kim. It was tough leaving and everyone scattering to the four winds

    ReplyDelete
  3. Jill is incredible. I love how real she is. She's like a medical unprofessional in how she has the schooling but she also manages to completely and utterly understand us. Love her.

    (And I did feel bad for Jeff when he visited our session. "Booo - no boys allowed!") ;)

    Was great to see you! I wish we had more time to hang out.

    ReplyDelete
  4. I attended FFL UK last year, and will be going again this year. I too was a bit worried about going as an adult with type 1 - bearing in mind how much smaller the UK version is, I was worried I would be the only one.

    I was right in that there were only a handful of adults with type 1 there - but that didn't matter. We were all there for 1 reason, and that's what solidified us as one group. It was brilliant. I absolutely cannot wait for this year's, I can't wait for that feeling of being totally 'normal' for a weekend.

    I'm hoping to come to FFL Orlando 2012 - but it is the week before my mum's wedding so I'm just not sure I'll be able to make it!

    I would love to hang out with all you guys. I would love to have more adult sessions but I don't know if FFL UK is big enough to facilitate it...I hope it becomes big enough to!

    You guys should all consider coming over to the UK for FFL here :)

    ReplyDelete
  5. Thanks for such a great heartfelt and awesome post, Kim. Sounds fantastically magical, indeed. It's so great to be able to have so many in our community come together for FFL and be a part of it, adults or kids or Type Awesomes. We're a huge jigsaw puzzle and each piece compliments each other, and this just shows one marvelous view of what can be accomplished when so many pieces are put together in one place. How to be able to make it down the road!

    ReplyDelete
  6. Love this post, and the pictures of y'all. It sounds like d-camp for grownups--something I've craved for a very long time (since my last year as a d-counselor)! Thanks for sharing the love and fun and amazingness you experienced in this post.

    ReplyDelete
  7. Sounds like such a wonderful experience!
    We are going to try to make it next year...would be a great thing for Bean to start making some life long friends...and me to connect with some other D'rents and see some bloggy buddies IRL!

    ReplyDelete
  8. I thought for sure I commented when I read this earlier, but I guess I only tweeted :)

    This is a great summary post! I can't wait to read more of your perspective on some of our experiences (and our video projects!).

    Dr. Jill is the best!

    ReplyDelete
  9. You guys are amazing! I pray K will find a similar group of friends when she's older. I am priveleged to have met you and just seen y'all. As they say in Japan, "gambatte ne!" Ivy

    ReplyDelete
  10. Getting to meet you was one of the things I was most looking forward too. You seemed like the kind of person I would totally click with and guess what...
    CLICK! you are awesome!!!

    It was hard saying goodbye but I know we will be hanging out again soon enough.
    <3

    ReplyDelete
  11. love it love it love it! you're right, it was totally a gift! :)

    ReplyDelete
  12. I totally missed out on those cupcakes! The kids got them though. I'm very interested now in going to Jill's sessions next time! I missed them this time around.

    ReplyDelete
  13. Green Wristband of Significance - love it!!! Just last night I was talking to someone at our local D-Dinner, and as I said something about having diabetes I found myself raising my left wrist. Why? Because that's where I wore the wristband and now I automatically expect everyone to see the green band and get it!! LOL

    ReplyDelete