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.
You wouldn’t expect that from me, especially since our house is on the minimalist side of the spectrum and I’m not very nostalgic with material items. But I am hoarding right now and I don’t know how to stop.
It’s been almost a month since the Friends For Life Conference in Orlando. I’m hoarding memories and things I want to say about what I discovered while I was attending. I want to share and yet every time I sit down at the keyboard, my mind seizes up and won’t let the words flow. What’s worse is that I am still processing some aspects, so one thought piles on top of another, pitching precariously over my head.
Others have touched upon their own personal highlights, and I’ve done my share, but there is so much more that needs to be told.
So, I ask this of you. Much like hoarders who get professional help, I have to start small, so I’m leaving it up to you, dear readers, to tell me the order of my posts. (Maybe this will help me release some of these thoughts and feelings…).
What would you like to hear about first?
You’ll be able to see what others think, but don’t let that sway you. (If you want to hear me talk about something else, then comment on that as well…) I need help before my head is condemned!
It was ugly.
Institutional. Klunky. An eyesore.
And a constant reminder that I had, as it was engraved on the back of it: DIABETES.
The firecracker red caduceus symbol was like a neon sign to strangers, both adults and children. The conversations were:
“Are you allergic to penicillin?”
“No, I have diabetes.”
The Look* came next and the inevitable Greek tragedy of some loved one who was afflicted with this horrible, wretched, unforgiving disease and was now dead. (Don’t get me wrong. It’s horrible, wretched, and unforgiving, but I was twelve. A mature twelve, but I was still scared out of my wits. You don’t say stuff like that to a kid. Ever.)
*The Look can only be described as the reaction on your face when you accidentally punt a puppy into a wall or fart in a quiet room full of people you want to impress. A painful, pitiful, “Oh my gosh, I can’t believe that this is happening…” expression. You know The Look.
“I have to wear it because my parents said so. I have diabetes.”
“Whatever. It’s pretty shiny.”
I preferred the children’s style of conversation, obviously.
I dutifully wore it everywhere and just gritted my teeth every time I looked down at my wrist. For a while, I shoved it under my Swatch® watch and hoped that no one would notice. By the time I was sixteen, that stainless steel shackle was thrown into the bottom of the jewelry box. Sayonara.
In an attempt to get me to wear something in case I passed out in public, my parents bought a prettier, delicate gold one. It got some play, but joined the first one at the bottom of the box.
“Stainless, meet Gold. You’ve got so much in common.”
Years went by and when the mood hit, I would pull out Gold and slap it on. When I went on vacation or when I was traveling for business. Never when I was out “hitting the clubs” (Gah, what a horrible phrase…), when I probably needed it most.
That’s what I was playing. For stupid, vain reasons. I didn’t want people to know that I had diabetes. I didn’t want to talk about it, didn’t want people to know me as “the chick with diabetes” (rather than “the chick with the classic, dry wit” - they didn’t know me as that either, but I could dream…), didn’t want to be judged if I was stuffing my face with a doughnut or a Big Mac.
Even after I began wearing a pump, I would still not regularly wear a bracelet. I bought a Sports version for kicks, but it joined Stainless and Gold in the box (which was starting to get crowded…)
I didn’t when I began wearing a CGM. Why? Wasn’t it obvious? Neon signs - two of them now. (And these items even beep!)
Goodness, it wasn’t like people couldn’t see those items strapped to me like a mad bomber in the marketplace. And I wasn’t shy about my diabetes anymore. I’ll talk about it to anyone who asks and I tend to push back when they start up the kidney or amputation monologue.
Know what changed?
I was sitting in a session at the Friends for Life Conference in a highly emotional (at least for me) session: “Parenting with Type 1 Diabetes”, listening to someone I admire greatly say:
“I have my children’s names on my ID bracelet so that if something happens, the first responders can call them by their name.”
At that moment, my selfish Diabetes Roulette game was over.
If something ever happened to me in public, I want my daughter to be safe and spoken to gently by her name. I want my husband to come get her or to be informed of what was happening.
I am wearing one of those ID bracelets now (Blaze orange Sport, if you must know, which makes Stainless look downright sedate), waiting impatiently for the new Lauren’s Hope one with my daughter’s name and my husband’s phone number engraved on the tag.
It will be a constant reminder that I have diabetes.
And a family.
And that both need to be cared for when I can’t.
At most conferences, you have opportunities to meet famous people and CWD’s Friends For Life was no exception. Crystal Bowersox, Kris Freeman, Jay Hewitt, Will Cross (and many more!) were all on hand to pose for pictures and provided inspiration to the kids at the conference. From climbing Everest to being a finalist on American Idol, they’ve all reached new heights with Type 1 diabetes. They are stars.
Not all of us are gifted with golden throats or strong physiques. It’s the roll of the genetic dice and a lot of hard work that got them to where they are today. They are raised up as aspirational examples of what Type 1 kids (or all kids) could become, but I’m here to tell you what I know:
We are all made of stars.
- The child who inserted her first insertion set on her own - star.
- The father who gets up in the middle of the night for blood sugar checks - star.
- The sibling who carries glucose tabs in his backpack “just in case” - star.
- The mother who comforts the parents of a newly diagnosed T1 - star.
- The teenager who realizes that skipping shots doesn’t help in the long run - star.
- The researcher who refuses to give up until we have a cure - star.
- The stranger who hands over test strips to someone because they’re out - star.
- The nurse who talks to a patient as a person and not as a number - star.
- The doctor who doesn’t judge, but rather assesses and finds a way to make it better - star.
- The person who says: “I understand.” to you and truly does - star.
A single star, however bright it is, will not light up the night sky.
But we, as a community, together shine so brightly, because we are all made of stars.
I still haven’t recovered from the Children With Diabetes Friends for Life Conference (CWDFFL) last week. I’m tired in a good way and my head is still full of ideas that I want to share with the DOC (and others that I will keep to myself because they are so very personal to me). Expect to see a lot of posts over the next few weeks about FFL as I come back down to earth, but for now… it’s Fab Five Fridays: FFL Style!
Christopher Angell, a Type 1 diabetic himself founded the company and I’m so glad he did. (His dad helps at trade shows… see Christopher’s comment below…They currently offer three flavors (Orange Creme, Wildberry, and Cherry) but I think there are more flavors on the horizon. (Many in the DOC are pulling for Nutella flavored tabs, but Chris is keeping mum…)
You know how you’re low, pop a glucose tab that you bought at the store, and go: “Oh, yuck. I have to chew this? Yuck!” Glucolift doesn’t make your brain do that. And unlike the old B-D Glucose tabs (which haven’t been available for years, may they rest in peace) or Starburst or juice, you’re not going to overdo it and end up sky high a few hours later.
You can order Glucolift directly from their website and they send you a nifty-gallifty (Extra points if you know that phrase’s origin) travel tube and a cool sticker. When we were at FFL, Chris put a Glucolift temporary tattoo on my daughter’s arm (with my permission, of course). She wore that tattoo proudly and showed everyone her “rocket ship!”.
I keep a jar of Cherry next to me in the cupholder in the car, one on my bedside table, and a full travel tube in my purse.
(They have a sample pack with all three flavors and a free travel tube so you can pick your own favorite.)
2. Drs. Sean and Tamara Oser - I attended a session about how to be the best patient you can be, led by these two very intelligent and very personable doctors. Sean is a Type 1 diabetic and so is one of their gorgeous twin daughters. They have the full 360 degree perspective: as doctors, as patients, and as parents of patients. I learned so much from them (and was shocked by some of the statistics they shared, which is another post in itself), but the cool takeaway was a planning worksheet to prepare you for your appointment. I’ll ask them if they’d be willing to post it online for download, because it’s so worth it. Sean blogs at t1works and Tamara blogs at t1family. Check them out!
3. Dr. Ed Damiano and the Bionic Pancreas (sounds like a band, doesn’t it?) - I’m still, a week later, trying to put into words what I felt listening to this gentleman speak. Driven by the T1 diagnosis of his young son, he set out with a grad student of his to create an algorithm that would push a little insulin or a little glucagon based on a CGM reading. I held it in my hands and sat with Anna at our table, who participated in the human trials this spring. (Scott Johnson even wore the CGM portion of it for the remainder of the conference and we saw his BG numbers on a large screen) I want one now, but I’m willing to wait four years until it’s available. Four years. It may seem like a long time, but in the diabetes timeline, it’s a blip. I’ll have a whole post about him and the Bionic Pancreas. Soon. Promise.
4. Meri Shumacher - Mom to four boys, three of whom at T1, she was one of the keynote speakers. Dr. Richard Rubin, who was a huge force in the DOC for years, passed away from cancer this year, and Meri had a special connection with him. Please have tissues handy when you read My Homage to Dr. Rubin at FFL 2013 - this is her keynote address.
5. Friends For Life 2014 - July 2-6, 2014. ORLANDO. Put it on your calendar. Look, whether you are an adult Type 1, teenager T1, parent of a T1 or interested in diabetes research, this is where you need to be. As I sat next to my parents at the keynote (They were so gracious as to attend to provide me some much needed toddler backup.), I wished with all my might that this conference existed thirty years ago. I’m grateful that it exists now. Join us next year. Please. I want to meet more amazing people. You were missed.