Stop.

It’s no surprise to those who know me or read this blog that I have fingers in a lot of (no carb!) pies these days. What started with this blog has blossomed into two non-profits, The Diabetes UnConference, policy advocacy, reviewing funding grant applications as a peer reviewer nationally and internationally, and attending/speaking at health conferences.

stop-sign-1420987-639x639This past month, I didn’t stop. Coming off the high of The Diabetes UnConference in Las Vegas, there was a short vacation with family (although John says that I really didn’t act like I was on vacation), then the launch of the DPAC #suspendbidding campaign and in the midst of it all, travel to the CWD Friends For Life conference in Falls Church, where Bennet and I unleashed the DPAC Diabetes Advocacy Boot Camp with some phenomenal guest speakers and calls to action. All good things. All important things.

Yes, I slept. Yes, I ate. Yes, I took time for myself. (Although in retrospect, reading a grant proposal with a highlighter in my hand while I got my hair cut doesn’t qualify as time for myself.) I was gearing up for a weekend conference that I not only wanted to attend, but had the privilege of helping to design as an advisor. On Thursday, I headed to Chicago, raring to go.

Off.

And I slept on the plane. Normally, once the flight attendant gives the signal that it’s OK to do so, I’m like a thoroughbred out of the starting gate, whipping the laptop out and working on projects and ideas while others watch cat videos. This time, while waiting to take off, I simply shut my eyes to meditate for a few minutes and the next thing I hear is the announcement that we were landing. That should have been my first clue.

Chit-chatting with the driver on the way to the hotel, I began to feel “off.” That “off” that you can’t really put your finger on, because you’ve done the mental checklist in your head:

  • Low blood sugar? Nope.
  • High blood sugar? Nope.
  • Food in your belly? Yep.
  • Could you be “real people” sick? Nope.
  • Hydrated? Yep.
  • Rested? Am I ever? But I just had a nap!
  • Is Venus in retrograde while you’re wearing itchy socks? Nope.

I assumed that it was a combination of getting off a plane and getting up early to get on that plane, but there was the little voice in the back of my head that said…  “Something else is going on.”

stop-1473017-639x772I checked into the hotel, intending to drop my bags and take a walk. That all changed when I opened the door to my room and a wave of exhaustion swept over me. Not a normal wave; a tsunami that scared me enough to text John and say: “I don’t know what’s wrong with me. What I am feeling isn’t normal. This is not normal exhaustion.” My smart husband told me to go eat lunch, then head upstairs and mediate for a few minutes.

A healthy lunch eaten and that meditation turned into a two and a half hour nap. I still felt tired. The next day, another long nap and still exhausted. When I asked friends why I might be like this (and saying that my blood sugars were in range and I wasn’t sick), the responses ranged from: “Could you be pregnant?” (Nopeity-nope-nope. The Kid will be an only child.) to “Have you checked ketones?” (Which was a smart idea and I didn’t have any.)

energy-1-1176465-640x512Everyone Should Know Rhonda.

And then I met Rhonda Waters. She’s part of the Johnson & Johnson Human Performance Institute, specializing in energy management. Not the kind of energy that keeps the physical lights on, but rather the energy that keeps the human lights on. During a reception at HealtheVoices16 (which I will share in a separate post as it deserves it!), I was introduced to her and joked: “Where were you yesterday when I needed you?”

I was trying to be funny, saying that I was tired and it wasn’t like me to feel like that. And she didn’t laugh, but rather talked to me about “forced recovery” which is what your body does when it’s void of  the mental, physical, emotional, and spiritual energy everyone needs.

I didn’t just listen. I heard and felt what she was saying. At that moment, I understood that if I kept depleting my energy, I was no good to myself, my family, my friends, and my community. The world will continue to spin without me attempting to direct its course.

At an energy break session on Saturday during HealtheVoices, a small group sat with Rhonda for what was supposed to be a quick 15 minute pick-me-up. An hour later (!), I left with words of wisdom from other advocates and Rhonda. My “ah-ha” for this conference was this:

“What would you say to a friend?”

Thunderbolt. And sadness.

What I would say to someone I cared about and what I had been telling myself were two very different things.

My question to you is this:

How do you know it’s time to stop before you get to “forced recovery” and what do YOU do to take time for yourself?

Right now (well, after this post) I’m reviewing my calendar and putting time in for me. And I’m going to stop removing those times that I had scheduled for me in favor of getting something else “more important” done.

I don’t want to stop. But sometimes, as I’ve learned this weekend, you have to stop before you can go.

Definition of Insanity: The Diabetes UnConference Las Vegas 2016

un-diabetes-conference-fullcolor-iconCall me insane. I’ll agree with you happily. 

One definition of insanity is doing the same thing over and over again, expecting a different result. (There are many who attributed that definition to Einstein or Twain, wrongly so, but it’s catchy and apropos, so who cares?)

The second Diabetes UnConference, held in Las Vegas from March 11 to March 13, 2016 proves that I am insane, because I wanted a different result.

The Diabetes Collective provides the framework, the facilitators, and many of the same topics. But what makes each conference different is the attendees and their inputs and insights. And not only was the conference different from the first held over a year ago, the outcome was different, too.

We had alumni return, volunteering their time to help ensure the “behind the scenes” items ran smoothly. They provided soothing continuity to me, a reminder that other people believe in this mission to provide safe, protective environments to talk about the psychosocial aspects of living with diabetes with others impacted by diabetes. My facilitators, many of them alumni themselves, gave their all to guide the conversations around the topics the attendees chose.

And the new attendees were… breathtaking. Some knew what to expect because they had friends who attended last year, but others came bravely, baring their souls. They have won my heart with their willingness to participate and add their voices to our community.

We also included a new group: PLUs, otherwise known as People who Love Us. Spouses, siblings, parents and significant others joined us this year, creating their own safe space to share. Do I know what they discussed? Nope. I’m not a PLU and because we honor the policy of not sharing what is said inside the sessions, all I can tell you is that some powerful bonds were created.

12814426_10154008934837328_3796871238977909946_n

2,521 years of diabetes was the final total in the room.

Some triumphant years, some scary years, but when I looked at all the fortitude and determination in those faces surrounding me, I felt like there was nothing that we couldn’t do together. We had Joslin Medalists (50+ years) and those who had been diagnosed less than a year ago. Some Type 2, some Type 1, some who were impacted by diabetes in their lives but living with functioning pancreases. We can move mountains or, if nothing else, support each other through peer support.

Tears. Laughter. Anger. Frustration. All to be expected. After all, this is my tribe. And I love each of them not because of the connection… I love them for who they are at the very core of their beings – and it has nothing to do with diabetes. And what was different? Everything, because my tribe chose the topics and then bared their souls. New year, new souls.

10310620_10153964797667328_3985839487623279150_n

I look forward to growing our tribe at the next Diabetes UnConference in Atlantic City in September and being completely insane again.

Happily insane.

 

 

 

 

Forever Arriving:

IMG_0839I’d love to give you a comprehensive synopsis of what happened at the inaugural Diabetes UnConference in Las Vegas a few weeks ago, but I can’t.

It’s not because of the social media blackout (more on that later in another post) that the attendees agreed upon at the beginning of the sessions so that people could talk freely about personal issues.

It’s not because no one took notes or had nothing to say. Others have already spoken eloquently about their experience.

It’s because I can’t yet fully wrap my arms around what transpired, because they are filled with my heart. And my heart is filled with emotions I thought I could handle, but apparently… silly me. Two weeks later and I find myself struck mute, throat constricted from a remembered confession and the gratitude of brutal honesty.

As Stephen Shaul says so beautifully:

The problem is, the UnConference was not about one subject or another as much as it was about us, the people who were there, and our lives with diabetes, how we choose the devices we choose, how we navigate relationships involving diabetes, and that awful trifecta of guilt, depression, and burnout. And a LOT more.

About Us

He (and many others who have said much the same) is right. It was – and will always be – about us. Not just those physically present in the room at The Diabetes UnConference, but the “us” of our community. I’ll talk about the logistics and what worked and what didn’t – but the crux of what made this event so indescribable was the people and their individual experiences.

We are more than our diabetes, more than our diagnosis, more than our desires for a cure… but if we don’t discuss day-to-day living and “scary” or “taboo” topics with this chronic disease through deep, meaningful interactions (whether online or face-to-face), we run the risk of feeling isolated and disenfranchised.

1436965_20488329The Diabetes UnConference came out of a personal desire to create a safe place for these discussions – and an even more personal desire to push past the superficial connections that are sometimes created (not through anyone’s fault, but the way the Internet works…) online. When we walked out of that room a few weeks ago, were connections made that will take root and inspire others to be more open about living with diabetes and connect in new ways? Time will bear witness.

I know that I’ll be able to talk with greater clarity about what happened and what we are going to do next because of what happened, but for now, the cocoon is still woven tightly around me. I am comforted by that and I’m not ready to let these emotions fly just yet.

 

Stolen Words from Octavio Paz

While I can’t yet talk about it, this aptly describes how I view what occurred…

a crystal willow, a poplar of water,

a tall fountain the wind arches over,

a tree deep-rooted yet dancing still,

a course of a river that turns, moves on,

doubles back, and comes full circle,

forever arriving:

– Octavio Paz, “Sunstone”

1188980_19108234The poem is about an individual’s quest for connection and community and the loneliness that one can experience without it. (If you’ve never read it, be forewarned. It’s 584 lines long, representing the number of days it takes Venus to orbit the sun. It begins and ends with the same stanza above. This monumental work is beautiful and haunting and worth every line.)

The takeaway of the poem and The Diabetes UnConference is simply this:

we need each other. 

Whether it’s at The Diabetes UnConference or in local face-to-face meet-ups or in welcoming online community sites like TuDiabetes.org. We must create these spaces and throw open the doors to those who need to talk, all the while respecting the sanctity of what needs to be discussed

There will be a 2016 Diabetes UnConference.There will continue to be opportunities for more individuals with diabetes (and those who love us) to have heart-to-heart conversations and build new circles that grow, welcoming new and brave souls to share and teach us. I hope that smaller versions of what we began in Vegas will pop up in a local meet-up. I believe it can be done.

What did I learn (although perhaps, I always knew in my heart)?

Our community needs to have sacred spaces and full circles. We have deep roots and we will dance together. And most importantly…

We are forever arriving:

 

The Diabetes UnConference DEADLINES

Hi, you.

Yes, you. I’m talking to you with the diabetes.*

Wanted to give you a quick update on what’s going on with The Diabetes UnConference. (And if you don’t know what it is… please go to www.DiabetesUnConference.com and learn about the first multi-day peer-to-peer idea exchange for ALL adults with diabetes (Type 1, Type 2, Type I want to talk about my diabetes…) being held at the Flamingo Las Vegas from March 13 – 15, 2015.

Room Block Deadline: February 10, 2015

1145DB10980204DD1A48CB84162B3570Book your room now.

The super-duper low room rate at The Flamingo Las Vegas, where the conference is being held, is only available until February 10, 2015. (This means you can count the days left on two hands if you have all ten fingers. If you don’t, well… borrow.)

After that, they release the room block to the hoards of basketball fans who will descend on Las Vegas for March Madness. (We root for Team Diabetes UnConference. We are undefeated.)

Don’t get caught paying a stupidly high rate for a room that you can get for a song (if that song costs $69.00+applicable tax and fees) through The Diabetes UnConference room block. Check out the information about The Flamingo Las Vegas here. And book your room here.

Attendee Registration Deadline: March 1, 2015

un-diabetes-conference-fullcolor-iconEven if you aren’t planning on staying at the hotel, please register by March 1st. We won’t be able to accommodate walk-ups, as head counts must be given to catering and for the incredible Dexcom sponsored High Roller event. I would hate for anyone to not be able to participate because they waited until the last minute. I can’t “squeeze you in”. Don’t miss out.

Why Should You Come To The Diabetes UnConference?

You can learn why I think you should come. Watch this interview where I make a lot of funny faces and answer questions (thank to TuDiabetes for the hilarious chat!):

Of course, you don’t have to take my word for it. Take their words:

We want you to be there. We want you to feel like you can talk openly about diabetes without judgment and learn from others. We want you to join us for the crazy, zany, beautiful things that will happen.

Don’t miss out. We don’t want to miss you. 

*And you with the desire to help those with diabetes. We love you, too. While you can’t join us this year, you can help spread the word. Don’t worry… we have plans for you to come next year!

un-diabetes-conference-fullcolor-h

The Tribe

Birdie (Kerri Sparling's daughter) and The Kid (my daughter) at Friends For Life 2013 - just two of the gorgeous children that T1s can produce.
Birdie (Kerri Sparling’s daughter) and The Kid (my daughter) – just two of the gorgeous children that T1s can produce.

In less than twenty-four hours, I will be surrounded by my tribe.

Friends for Life, the premier conference for families with Type 1 children (and some of us Type 1s who are children at heart), is going on in Orlando for the next few days. It’s the one conference that no one will ask you if you can eat that, look at your pump and wonder aloud if it’s a pager, or want you arrested if you say you’re high and pull out a needle.

The tribe grows larger this year. I’m honored to be on a morning panel for the first ever Diabetes Advocates MasterLab – a full day session discussing the importance of advocacy and how everyone touched by diabetes can be an advocate. What’s special about this is that we’ll have Type 1 and Type 2s together, along with the parents and grandparents of Type 1s (with some of them being Type 2s themselves). The more encompassing the tribe is, the more powerful it becomes.

For as horrible as this disease is, there is comfort in the solidarity of the tribe. Complete strangers give knowing nods in passing, acknowledging green bracelets signifying Type 1 diabetes on each others’ wrists. When a Dexcom trill goes off in a room, twenty people look down to see if it’s theirs. Someone has a low blood sugar? A torrent of glucose tabs rains down upon them.

There is such comfort in being with others who understand the silent wish as a meter counts down to a number. There is such joy in celebrating the new, squishy babies of T1 moms. There is even such pain as the tears flow when a fellow T1 speaks aloud your innermost fears. We are bound together by blood. And nonfunctioning pancreases.

The dream of The Diabetes UnConference came out of last year’s attendance at Friends For Life. I learned so much, but it was the moments of “life discussions” outside of the meeting rooms that sparked so much of what has now become a part of me. This year’s Friends For Life will continue to be a catalyst in how I live and be an inspiration of who I want to be.

I am eagerly awaiting the open arms of the tribe that no one ever wanted to join.

My friends.

My d-family.

My tribe.