At DTreat in Tampa, Florida over the July 4th holiday weekend, I got to meet some incredibly special people with Type 1 diabetes. It wasn’t their diabetes that made them special, or that they had superpowers, or even that they had three hands and could magically put in an arm site for their Continuous Glucose Monitor (CGM) sensor without having to ask someone else for help. (Okay, maybe that last one is just my wishful thinking.)
What made these young adults special were the fantastic things that they were doing with their lives while living with diabetes. The majority of the folks there were college students, who were preparing for awesome careers in their not-so-distant future. There were young adults there who were transitioning from college, who were getting prepared to or already dealing with diabetes in a full-time job role. I looked around, and I saw lawyers, nurses, teachers, psychologists, dancers, librarians, social workers, and even baristas. (Believe me, if you don’t think a barista is an important job, apparently you’ve never been around me in the morning before I’ve had my coffee.)
Two weeks after DTreat, I got a notification on Facebook that I had been tagged in a photo by my friend Catherine Vancak. Because I’m a complete photo whor…um, opportunist…and I like to be in as many of them as I possibly can (just ask Scott Johnson), I traveled over to Catherine’s page to see what Kodak moment I had been captured in this time. That’s when I found the shot of her balls. (Yeah, you try working that line into a blog post and get away with it…that just happened!)
While in Tampa, I was asked to speak to the group about how to connect with others who live with diabetes, the Diabetes Online Community (DOC), and ways to take the DTreat experience home. One of the things I talked about pulled from my own personal experience of not having anyone with diabetes to connect with for 28 of my 30 years with Type 1. I stressed to my new, pancreatically challenged friends the importance of not letting the opportunity that they had to connect pass them by. I encouraged them to exchange phone numbers, email addresses, become friends on Facebook, follow each other on Twitter, sign up for TuDiabetes, or Juvenation, or get involved with Students with Diabetes. Whatever way they could to keep in touch.
I wish so much that I had had the opportunity to know more people with diabetes earlier in my lifetime, and that makes me eternally grateful for those that I have become so close with in my life now.
Catherine had made these cake balls, and had tagged each ball with the name of a friend that she had met at DTreat that she had gotten to know and who had made an impact on her life with diabetes. They were her way to connect. To me, it was a clear indication of how important it is to have other people with diabetes in our world, and the positive impact we have on each other.
As Catherine said, “I need to make more balls so I can add more diabetic friends!”
Don’t we all.
P.S. – Remember I mentioned that there were dancers at DTreat? Catherine is a trained ballerina, with Type 1 diabetes. Proof that with diabetes, motivation comes from what we can do, not from what we can’t do. Dream big. There is nothing you can’t do with diabetes.
O is for Outrage
The topic of the United Nation’s 2nd summit on global health issues is non-communicable diseases (NCDs), of which diabetes is one. Create a postcard right now to send to United States President Barack Obama, and ask him to represent us at the UN Summit on September 19-20, 2011. The IDF is taking care of all of the shipping costs. (P.S. – I don’t care what political affiliation you are or whether or not you approve of President Obama. This isn’t political. This is necessary.)
Do this now. Just click the “I Agree” link above. Just by doing that, you are telling the IDF, the UN, and the world that you support essential care for people with diabetes. People should not have to choose between starvation and living life with diabetes. Not anywhere.
Life For A Child
Saving the lives of children in the developing world. As Professor Mbanya said in his time with us on DSMA Life, “No child should die from diabetes.”
World Diabetes Day
November 14 is World Diabetes Day. Wear blue on this day, attend or host an event, and increase awareness of diabetes worldwide.
Something that really jumped out at me was what he shared about the stigma of diabetes, especially in less fortunate countries where oppression, starvation, corruption, overpopulation, and poverty reign.
Professor Mbanya shared with us the story of a man whom he met in a hospital that had four children, one of which was a daughter who had type 1 diabetes. Despite what help he could get from the hospital, the man was always sad and never smiled. One day Professor Mbanya went away on a trip, and when he returned and happen to run into the man, he was happy, and had a smile on his face. Professor Mbanya asked him, “Why are you so happy?” The man answered that his daughter with type 1 diabetes had died. Professor Mbanya, unable to understand why the death of a child would bring a smile to the father’s face, asked, “Then why are you smiling?” The man answered, “Professor, it was better that my daughter should die, so that the rest of the family can live, for when she was alive we couldn’t eat, the other children had to drop out of school, and now I have changed and put on weight because we are able to eat.”
Among some tribal people in the undeveloped world, diabetes is not viewed as a medical condition, or a sickness, or even a disease. It is viewed as a curse. Professor Mbanya explained to us that in those cultures, the family of a child with diabetes is viewed as having the disease as much as the child, where parents take their children and commit suicide or infanticide because of the profound negative stigma of diabetes.
In 1979, Chinese leader Deng Xiaoping enacted the One Child Law for urban areas of China in an effort to control population. The basic premise of the law states that couples are limited to only one child per family. However, if that one child develops type 1 diabetes, then an exemption is allowed so that the parents may essentially try again, because the expectation is that the child with diabetes will die.
Professor Mbanya said it, and I couldn’t agree with him more: “No child should die of diabetes. All children should have adequate access to insulin, monitors, supplies, and education needed to have a happy and quality life.”
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.
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:
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:
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.”
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…
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.
I’m back from another whirlwind adventure. This time, a trip to the Children With Diabetes: Friends For Life 2011 conference. Or as I like to call it, “Diabetesland.” The week was absolutely incredible, spending days and nights with people with diabetes…just like me.
It. Was. Awesome! I have a lot of stories and information to share from the Friends For Life experience, but first I want to recap an event that was eight months in the making.
On Tuesday, July 5, 2011, nearly two dozen people who share their lives with diabetes joined together for the first ever D-Coaster Day, inspired by those days that are spent on the glucoaster with our blood sugars going up, down, and all around. Except this day was way more fun. WAY more fun!
Thank you to all of the folks that came out for D-Coaster Day. It truly means the world to me that you joined in on this crazy idea, and made it such a huge success. I hope you had as magical of a D-Coaster Day as I did!
After an amazing evening Friday, on Saturday we started the DTreat day off with Joe Solowiejczyk (who has had Type 1 diabetes for over 50 years) talking about the psychological aspects of diabetes. With diabetes, we get a lot of feelings. It is a struggle sometimes to not let the negative emotions overwhelm us: Anger, sadness, depression, frustration, exhaustion, fatigue, and sometimes even boredom from feeling like we’re doing nothing but the same things over and over.
Joe encouraged us to allow those emotions to come up, because they will lead to what is really going on and the things that we really need to give attention to most. Whether you have diabetes or not, it’s important that we learn to deal with our emotions in a healthy way so that we don’t adopt a more detrimental pattern of behavior.
Something Joe proposed to our group at DTreat really stuck with me. I don’t think there is one person that doesn’t get depressed at some point in relation to life with their diabetes. It is okay to feel that way, and something we need to be okay with dealing with. It is a progressive and all-consuming disease, and sometimes we just don’t have the strength to push back. He suggested that when we’re starting to feel this way, we should schedule a Diabetes Depression Day.
We all do so well taking care of our diabetes day in and day out, going to work, school, church, raising children, traveling, and everything else that comes are way. As a group of people, the things that people with diabetes are able to accomplish truly defines what it means to be heroes. We save our life with every decision we make throughout the day, and it’s often a thankless job. It is hard for us to appreciate what we do because we HAVE to do it. We work so hard day after day to avoid complications, not to win a prize. The prize is when we don’t get anything at all as a result of diabetes. When you take a Diabetes Depression Day, it forces you to take the day off from work, or school, or other previously scheduled activity and take a day for you. You can even take more than one if you need it. You have the choice of a day to give in, where with diabetes, you did not.
Joe said that on his day, he tells his friends and family ahead of time that he is going to take whatever day off for his diabetes day, and he has them call every hour to tell him how awesome and courageous he is for what he has accomplished in his life with diabetes. Then, on the night before, he goes to the store and gets two different kinds of ice cream and movies to watch. He said, “I didn’t have a choice with the diabetes, but I have a choice in what type of ice cream I want and what movies I want to watch.” By the time he starts his day with ice cream and movies, and folks calling him and telling him how awesome he is, it doesn’t take long before he is in better spirits.
Speaking of spirit, Joe also explained to us that there is a spirit of powerlessness that is at the core of diabetes, and something we fight every single day. He said at one point, “There is nothing more helpless than an adult with a low blood sugar.”
I can certainly appreciate that, because yesterday morning (24 hours after Joe’s talk with us), I had a severe low BG myself. Thank goodness I was around people who “get it” and understood that I needed some help. One of my three roommates, Tremayne, found me on the floor after I had gotten out of bed, dressed, brushed my teeth, and that was the last thing I remember before seeing him, my other roommate Zack, and Mike who works with people with diabetes every single day. They stuck me with glucagon, and were patient with me and eventually helped me to get back to normal.
This low BG was the same as others that have put me down before in that I’m still sore all over from the seizing up, and my tongue is swollen and hard to talk and chew from the involuntary biting, and I was super nauseous (I suspect from the Glucagon). What made this low BG different (and so great!) was when I joined back up with my DTreat friends, not one single person made me feel guilty, or embarrassed, or anything less than a part of the group. I think that is because we all know that it could be any of us in that severe low BG situation, and we all know that it is nobody’s fault, especially not our own. As Joe said, “There is no one that judges us as harshly as we judge ourselves.” We can only do as best we can with all of the unpredictability that comes with a life of diabetes. If anything is to blame, we should leave that burden right where it belongs…with diabetes.
I worked last night until 11 o’clock trying to get things that I absolutely had to do accomplished. Then I went home and did laundry, and I was supposed to pack and get all my stuff together for the DTreat. But I didn’t. Nope. I fell asleep before anything sensible like that could be accomplished. That’s what happens after you go full throttle all day and night.
Know what else happens? You wake up low and move at a snails pace with the half realization that there is no possible way you’re going to get everything that you failed to accomplish the night before done in time to get to where you’re supposed to be later in the day. I scrambled around and finally managed to leave the house in time to get to DTreat in Tampa before things kicked off at 6 o’clock. However, I forgot that it is the Friday before the July 4th holiday weekend. I ran into more traffic and accidents than I had budgeted time for, so I finally made it to the DTreat almost two hours after registration had been scheduled to close. At one point I was sitting on I-75 with my car parked and turned off, ten miles away from the DTreat, and no way to get there but wait for the Florida Highway Patrol to clear the accident that was ahead. I called A-Flizzle practically in tears of frustration, I had a massive headache from not eating all day, and I was so close, yet so far way.
It was a horrible day. Until I saw this…
…and that made all the difference in the world.
I arrived at DTreat just in time to miss dinner, but also just in time to get to meet other people with Type 1 diabetes who are just like me. We started with an exercise that was an icebreaker, basically introducing ourselves. It occurred to me as we were doing an exercise that demonstrated our strength and ability to make things happen as a group that even though I didn’t yet know the names of most of the people there, there was not a stranger in that room. Every single person within those four walls “gets it.” They understand the seemingly random beeps of a pump and CGM monitor. They don’t think twice about pricking a finger and testing before having a snack. They know what it’s like to be “low” and “high,” and have wildly entertaining stories to go with each.
These are my people.
I am so thankful for the folks here who are in college, transitioning from life with parents to life on their own, and the fact that they have something as amazing as DTreat to help them deal with their diabetes while they deal with their new found independence.
I am so thankful for those folks here who are just beyond college, and are transitioning into a professional life of a contributing adult in society, and that they have this amazing opportunity to meet other adults who are doing and have done that same exact thing.
I didn’t have this opportunity when I was in those various transition stages of life. I didn’t have anyone. That’s why I am so very thankful that I have this opportunity, to be a part of something bigger than just me, and to be able to see, hear, touch, and be touched by others and know without a doubt that I’m not alone with my diabetes.
Nicole Johnson, former Miss America, and pretty much boss of breaking the mold of what you can and can’t do with Type 1 diabetes, is greatly involved with the DTreat. She talked to us a bit tonight about finding the fire to fuel your life with diabetes. You don’t have to be perfect with diabetes. It’s okay for all of us to identify things that we suck at, especially with our diabetes. (Side note: Nicole didn’t say “suck,” because she is more eloquent then I am. That’s all me, Martin Wood, paraphrasing by using words out of my full color English dictionary.) Nicole stressed that if you can find the strengths in your life with diabetes, and use that perspective as fuel, it will make you stronger and help you overcome those days when diabetes wins.
There was one exercise that we did tonight that identifies some of the big issues we deal with while living life with diabetes. While this event does focus on Type 1 PWD’s, many of the topics identified resonate throughout the diabetes community, regardless of type. Things like traveling with diabetes, exercise, relationships, insurance, stress, diet, family, work, technology, myths and misconceptions. I’m looking forward to the discussion about these topics over the next couple of days.
Something that I realized when I was looking at all of the notes on the walls and seeing all of these other amazing people adding their thoughts to them was that we are most assuredly not alone with diabetes. Looking around the room, everybody there has as many questions about their diabetes as I have about my own. Those that have lived with diabetes only a few months, and those who have lived with diabetes for decades, we all have questions.
I know that this DTreat is not going to answer all of those questions. Just knowing that someone else is asking the same questions about their diabetes as I am makes me feel a whole lot better about not knowing all the answers.