Friends For Life

FFL12 - Team Type 1 Session

Team Type 1 and Life With Diabetes

Friends For Life is not just for children with diabetes. It isn’t just for adults with diabetes. It is also for parents, grandparents, siblings, significant others, and friends of people with diabetes. Friends For Life is for those who need hope, who need help, and who need reassurance that anything is possible for people with diabetes, whether they themselves have diabetes or not.

Phil Southerland, founder of Team Type 1, lives to prove that anything is possible with diabetes. I’ve seen the presentation of the story of Team Type 1 several times, but Friends For Life was the first time that I’ve seen it directed to parents and caregivers of children with diabetes.

FFL12 - Team Type 1 Session

Phil started by introducing himself, and sharing the story of how he and his mom dealt with the reality of the diagnosis of Type 1 diabetes when he was a small child. I can relate to Phil’s story, as I was diagnosed at about the same time he was. I was two years old when I was diagnosed, and though doctors tried to fill my parents with hope that a cure was on the way, the reality of the diagnosis at that time, and for me at such a young age, was not as optimistic as it is today.

But Phil and I both made it, and we got to experience the Team Type 1 session at Friends For Life 2012 with one of us on stage, and the other (me) out in the audience observing how parents with the same diagnosis as our parents received about us were trying to figure everything out.

I was so happy to see the room full of orange bracelets (worn by those without diabetes). Friends For Life is ultimately a Children With Diabetes conference, and with the exception of an Adult T1 Track, it is geared primarily to children and their caregivers. For this session, I was actually the one in the room that wasn’t where I was supposed to be. Not really a surprise, as I’m rarely where I’m supposed to be, but still, it thrilled me to see so many parents who were interested in learning that their kids can do ANYTHING with diabetes.

Several of the parents in the room had specific questions for Phil about how to manage their child’s diabetes in various situations, such as while swimming, playing soccer, and other sporty situations. Something I see often with parents, especially those parents whose child is recently diagnosed, is that they want black and white, straightforward, no argument answers about how to deal with some aspect of their child’s diabetes. They don’t want it to be as “bad” as it is.

The truth of the matter is that diabetes is not black & white. It is gray, purple, green, yellow, and every other color of the rainbow. Although it has its tough days, living with diabetes is one of the best things that ever happened to me. If you ask Phil, he will tell you the same. With diabetes, you have to really know your body, pay attention to it, and as a result many people with diabetes (PWDs) are as healthy or healthier than a lot of people without diabetes. I find a lot of strength in that.

The specifics of diabetes varies for every single person. Honeymoon periods (the period of time for some recently diagnosed Type 1 diabetics where their body is still producing small amounts of insulin, which typically decreases as time goes by) last for weeks, or months. Low blood sugar symptoms show up at a BG (blood glucose level) of 110 mg/dl or 45 mg/dl, and sometimes not at all. Every single person with diabetes varies.

Phil’s best advice to the parents, and something I agree with him 100% on, is to let children become the CEO of their own body. Keep focused, but learn and let children learn from their diabetes successes and mistakes. Blame does not breed learning.

If your child has a low blood sugar, it’s not your fault, and it’s not their fault. If your child has a high blood sugar, it’s not your fault either, nor is it their fault. The same applies if you have Type 1 diabetes yourself. That is diabetes, and over three decades of living well with diabetes has taught me that it is critical to remove the emotion from diabetes numbers, such as blood sugar levels and A1C values.

It’s just data, and it isn’t telling you that you are doing it right or doing it wrong. Only a human can assign emotion to math. A blood glucose meter cannot do that. Take diabetes data with the same face value as a road sign or a traffic light: It is a cue that some sort of action needs to take place, whether that action is to make an adjustment, stop, proceed with caution, or keep going and you’re doing great!

The next time your child comes home from school, resist the urge to immediately ask them what their last BG reading was, or how they are feeling, if they need a snack, or how many carbs did they eat for lunch. Instead, ask them to tell you about the most exciting thing to happen to them that day. You may be surprised to learn that diabetes is not the most exciting part of their world, so don’t make it the most exciting part of your world either (unless you’re at Friends For Life).

Life comes first.

Friends For Life 2012 - A Whole New World

Don’t Just Do Nothing

Last Thursday morning officially kicked off the Friends For Life 2012 conference program. Appropriately, for me, it started with a plate full of bacon. I love breakfast any time, but I especially love breakfast at Friends For Life. Imagine being in an environment where everything you want to eat, from salads and entrees to sides and desserts, is carb counted, serving sizes are indicated, and everything is delicious. That’s food at Friends For Life.

A very special thanks to one Mike Schurig, aka Food Dude, for all of the yellow and green cards indicating nutritional values, making sure that there were Celiac-friendly options, and for helping to make sure that people with diabetes (PWDs) and their families had excellent food options to choose from.

Coupled with breakfast on Thursday morning was the opening keynote address by Tom Karlya, aka Diabetes Dad. He encouraged everyone at Friends For Life to not be satisfied with sitting on the sidelines, but to get up and do something to make a difference in the world, no matter how big or small it may seem. Then he showed us this video of Derek Redmond and his father from the 1992 Olympics in Barcelona.

Tom had a very simple message for everyone: Don’t just do nothing. Friends For Life was started because one family was going on vacation in Orlando, Florida and they decided to spread the word and see who all else with diabetes might show up. 500 people showed up, and Friends For Life was born.

I had a boss once who said to think about the things that people would remember 100 years from now, and make those things the focus of your life’s work. I can’t say for certain that there is anything that I have done (yet) that will be remembered 100 years from now, but if I can make the life of a person with diabetes better, then I feel like I’m on the right track.

Don’t just sit on the sidelines when you know that there are people in the world that you can help. Like Derek Redmond’s dad, get up, push through the barriers, and act. As much help as we may need ourselves, we can do even more when we help each other. Together, we can make a difference. That is what Friends For Life is about, that is what Students With Diabetes is about, and that is what being a person with diabetes should be about. We can self-promote ourselves all day long, and sometimes that is exactly what it takes to get things moving in a positive direction, but at the end of the day it is the lives that we have made better that count the most.

Friends For Life 2012 - A Whole New World

Friends For Life 2012

Friends For Life 2012

The world is full of both extroverts and introverts; individuals who gain energy and fulfillment through being around and engaging groups of people, as well as individuals who thrive better when they have time to themselves and are not as engaged socially.

There are all sorts of definitions and distinctions of what makes someone an extrovert or an introvert. You could take 20 personality tests and read the entire self help section of your local bookstore and still not have a clear definition of the two classifications for all situations.

For me, that is the kicker. I tend to sort of meander between extrovert and introvert depending on the situation. I love being a part of big groups, sharing information, having both normal and nonsensical discussions, and feel like I’m being included, if not leading the experience. However, I sometimes reach a point where I also need my “me” time to figure things out on my own and reflect, plan, scheme, and let my thoughts run wild without the constraints of appropriateness to the situation.

When I need to be an extrovert, I gravitate toward situations where chances are good that I will be at or near the center of attention. As an introvert, you can sometimes find me in a state of observation, quiet, seemingly on the outside looking in.

I’m like this with diabetes as well. There are times that I am perfectly comfortable wearing the proverbial tights and cape and hooker boots that make up the Super Diabetic persona (hey, it worked for Superman…don’t judge me), educating the masses about the ways of the ‘beetus, managing meals in a single bolus, calculating carb and blood sugar ratios in my head faster than a speeding bullet, and encouraging the newly diagnosed and recently overwhelmed with a healthy dose of You Can Do This.

There are also times when I don’t want to deal with my diabetes, much less try to convince other people that it is easy or that I have everything under control. Sometimes, with diabetes, it’s hard, and I suck at it. Not most of the time, thankfully, but sometimes it is overwhelming and I just need some time to reflect and figure things out.

Friends For Life 2012

This past week I was at Friends For Life 2012, which is this extrovert’s dream come true, yet there were times that I found myself reserved and low-key. I spent quite a bit of time listening and observing, sometimes clinging more to my introvert tendencies to try and figure everything out than clamoring for attention and putting my diabetes on stage and in the spotlight. This wasn’t my first Friends For Life, and I didn’t feel as if I was around strangers that I needed to figure out. I just wanted a fresh perspective, for both myself and my diabetes.

I really needed a week with people with diabetes. There is something extremely special about food buffets that have carb counts on them, not being looked at strange for whipping out a BG kit and pricking my fingers in public, and people that understand what a glucoaster is and are riding it all week right along with you.

Now that I’m back home, I’m putting together my thoughts on some things that I learned this past week. From all the things that can come with diabetes beyond just insulin, to amazing things that people with diabetes can do, to challenges with the FDA, observations of parents of children with diabetes, and even the diabetes online community in real life, I’ve got plenty to think about and share. But first, I need a night to rest after a week of staying up until the wee hours of the morning every night. After all, nobody goes to Friends For Life to catch up on sleep.

Downtown Disney DOC at FFL11

A Missed Opportunity

I’ve been trying to figure out how to write this post for over a week since returning from the Friends For Life conference. For those of you unaware, Friends For Life is an annual diabetes conference that focuses on those families, friends, children, and adults who share their lives with type 1 (insulin-dependent) diabetes. I wanted to share it sooner, but I am one to take my time with things, and consider them in relation to the circumstances that can’t always be seen through raging emotion. I prefer to err on the side of kindness, rather than anger.

Throughout the week of the conference, which was held at Disney’s Coronado Springs resort, the Disney cast members did an incredible job of taking care of the 3000+ people with diabetes who were there. From catering to those people with food allergies and diet restrictions, to their efforts to limit the chances of a person with diabetes getting stuck in a long line or stressful situation that resulted in a severe low blood sugar episode, the cast members and Guest Relations at Disney did a fantastic job overall. The staff of Children With Diabetes, the organization that coordinates the Friends For Life conference, played a big role in making sure our needs were met as well.

Downtown Disney DOC at FFL11

Getting ready to go to Downtown Disney

On one of the last evenings of our time together at the Friends For Life conference, a group of us decided to go to Downtown Disney to have dinner and do some shopping before wrapping up the week. We split into separate groups, and I went along with half the group to Fulton’s Crab House for dinner. We had a couple members of our party with food allergies, and the executive chef came to the table and discussed meal options with them, and made certain that they were taken care of. It was Disney’s attention to detail and customer service at its best.

After dinner, we ventured to Disney’s Design-A-Tee store, where guests can create a T-shirt with a familiar Disney character on it, and add their own text to make the shirt a personalized and custom souvenir. I found a great image of Cruella de Vil (the crazed, wild-eyed image when she’s driving the car in the cartoon version of 101 Dalmatians), and being someone that battles low blood sugars on a regular basis, it spoke to me of what it feels like when my blood sugar drops too low and all I can think about is how much I need to get glucose, sugar, candy, juice, or anything I can get my hands on to survive. Given that this feeling often includes confusion, and leaves me without the ability to properly form sentences, a modified version of the popular phrase from the video game Zero Wing, “All your base are belong to us,” popped into my head to go along with the image:

I’m low!
All your candy
are belong to me!

Happy with my creation, and satisfied that it contained no profanity, no hidden or derogatory meanings, and was something that I could wear all around Disney and at the Friends For Life conference without offending anyone and where both children and adults who live every day with diabetes know exactly what “I’m low” means and the confusion that often comes with the focused drive of finding something to eat to survive, I submitted my order and took it to one of the cast members in the store to have it printed.

I was almost immediately told that they would not print that message on the T-shirt.

I asked to speak with a supervisor, and she came out to talk to me, and was questioning me on what the words meant. I explained to her exactly what I’ve explained to you above, and her response to me was, “But it’s not even in proper English.”

I responded to her that it isn’t supposed to be proper English, and in addition to that it wasn’t fair for her to judge what is and is not proper English on a T-shirt. Many guests of Walt Disney World come from all around the world, some of which do not even speak English. I appealed to her the facts of the matter, that there was no profanity, no hidden or derogatory meaning, and I was clearly not trying to hide some evil motive because I was having a conversation with her explaining the entire intent of the T-shirt.

Finally, she seemed to understand that the message on the shirt was harmless, even if she didn’t understand exactly what a low blood sugar felt like to a person with diabetes. Just to be safe, however, she wanted to get the approval of the store manager, Robb.

She returned a few minutes later to tell me that the store manager, Robb, said that they absolutely would not print the T-shirt. He wasn’t even willing to talk to me about it. No meant no, and that was the end of it.

I was floored. How could something so innocent and so familiar to so many people who live with diabetes be so misunderstood?

A-Flizzle and I had purchased other items around Downtown Disney, spending our hard-earned and well-saved vacation money to take a bit of the Disney magic (and merchandise) home with us. This encounter over a simple T-shirt and the blatant lack of willingness to even attempt to understand a customer’s perspective, in fact 3000+ potential customer perspectives, really took the magic out of the experience for us.

We took our other purchases to the register in the store and told the cast member behind the cash register that we would like to return our items. As is typical in any return situation, he asked if there was a problem with the merchandise. We shared that we were unsatisfied with the service we had been given when trying to create a T-shirt relating to life with diabetes, and how the store manager had taken the joy and magic out of the experience. It left us not wanting anything Disney.

The cast member replied, “I’m Robb, the store manager, and I made that decision.”

Robb said that he read the message, and he took “I’m low! All your candy are belong to me!” to be derogatory on the T-shirt. He said that he took the words “low” and “candy” to an offensive and derogatory place in his mind.

I couldn’t help it. The only words I could get out of my mouth were, “And you work for Disney?” I was even offended at that point. What kind of people are being hired to run stores, attractions, and cultivate the Disney magic when they associate the words “low” and “candy” with being derogatory?

I might could understand it if the shirt had said, “I’m high.” It’s no secret that drugs are a problem in America, and unless you’re among a bunch of people with diabetes with blood sugars over 200 mg/dl, the phrase “I’m high” would normally mean something inappropriate for association with the image of a Disney character.

But that isn’t what the T-shirt said, nor would it have made sense with that message. It said:

I’m low!
All your candy
are belong to me!

I explained to Robb, the store manager, exactly the intent of the shirt and what the words meant. He volunteered an interesting bit of information that I hadn’t expected: Robb was a person with type 2 diabetes.

Finally, a breakthrough! I said to him, “Oh, wow! So you know what I’m talking about when your blood sugar goes too low and you’ll eat just about anything in sight to stop the shaking, the confusion, and keep yourself from blacking out.”

Robb said, “No, I don’t have it that bad.”

…

…

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I was speechless. Not something that happens to me very often, especially not at a diabetes conference.

Robb could have said, “Look, I appreciate the message you are trying to share, but based on my training and experience, I just don’t feel comfortable printing the T-shirt with this message on it. I assure you I will take the original wording and share it with my superiors, so that we can better address needs such as those of people with diabetes in the future. For now, could I help you maybe adjust the wording of the message or help you create a different T-shirt?”

I would have happily walked out of there with no T-shirt, or maybe even a different T-shirt, and this blog post would have taken a completely different tone had that been the case. Instead, as the Disney customer, I was left feeling like I had done something wrong, that I was a terrible person for even attempting to print such “offensive” and “derogatory” content on a T-shirt, and that I was no longer welcome.

And I felt like a big part of that was because I had diabetes, and Robb didn’t “have it that bad.” Nobody at any point in the process had stopped to consider that maybe embracing a message such as “I’m low” was my way of dealing with the frightening consequences that can be a result of actually having a low blood sugar, such as a seizure, or even death.

To put into perspective the tame message that I was trying to feature with the image of a not-so-tame Disney character, consider these questions. What are the appropriate words to associate with a crazed, wild-eyed image of Cruella de Vil, a character whose ambition is to steal puppies and skin them to make a fur coat? Maybe this…

I’m crazy!
All your puppy skins
are belong to me!

And yet I’m the one blamed for putting an offensive message on a T-shirt referencing the necessity of overcoming a low blood sugar. I would have happily gone back and made a T-shirt with Coco on it and had it simply say, “Eeek! Eeek!” had I been treated more like the loyal, lifelong Disney customer that I am and less like a pariah.

Disney, you can do better.