Terrorism Meets World Diabetes Day
Yesterday the unthinkable happened. Terrorism was thrust upon Paris France and in an instant hundreds of people were dead or injured in a senseless attack. It is an event that thankfully most of us will never be able to fully grasp but that fact won’t and should’t stop us from trying.
My family was having dinner in a restaurant as the attacks were happening. This restaurant has televisions hanging everywhere, each showing a different sporting event. I asked our waitress if they ever tune one of the televisions to the news and she replied, "sorry, just sports" and then she asked me why I wanted the channel changed. She had no idea, having been at work since the late morning, what was happening in the Paris. When we explained about the terrorist attacks and that they were at this very moment still happening, she appeared unfazed. I was saddened by her response but I understood that she has grown up in a world where this sort of violence is frequent and customary. We continued to get our news through social media and watched the situation worsen by the moment. I began to look around the room and wonder what happening to the world that I grew up in, the world that would stop in moments like this one and reflect - not just until the next story came along but for days and weeks. I don’t believe that humanity should cease to exist every time crazy people infect the world with their insanity, we all need to continue to live our lives. Still, the two thoughts conflict for me and I felt reminiscent for a time where I would have looked up and witnessed a community response to the events happening in the world.
Late last night I cancelled the World Diabetes Day post that was scheduled to run on Arden’s Day today because it contained the words "celebrate" and "happy”. I did so with a measure of sadness as I thought about how much effort the diabetes community puts into raising awareness for type 1 and type 2 diabetes each year. “I can't believe these two days are intersecting", I thought as I placed my head on the pillow only mostly comfortable with my decision to wait until next week to run the content.
Today I woke and witnessed a disagreement online that I must admit that I could never see coming. Passionate supportive people who both completely agree with one another were fighting about how they choose to recognize today and their anger and vitriol was escalating. Their words are what led me to write this piece and to recolor the Jean Jullien art in World Diabetes Day blue.
I witnessed people online devastated by terrorism this morning and as in most situations where you are ultimately powerless but determined to make a difference, we do what we can to show our support. Many people applied overlays to their social media avatars using the colors of the French flag. Not just beautiful to see as your timeline streams but spiritually helpful as you struggle to make sense of what happened yesterday. This is a simple act in social media that we can all agree is called for on a day like today. A small yet powerful message that says that while I may be unable to act personally, I feel on a global level as a human being. This act when aggregated truly makes a difference. A small gesture that joins with other small gestures to create a huge and meaningful statement. Somewhat ironically, this is exactly the impact that we hope our diabetes advocacy will bring.
Je suis Paris
Then I saw the people who live each day with type 1 and type 2 diabetes, people who have put all that they are into preparing for World Diabetes Day. These people are also deeply touched by Paris yet can't shake the feeling that today was their chance to say to the world, “please take a moment to understand what life with diabetes brings to the people who are affected”. It was our day to beg the world…
- Please stop using diabetes as the punchline for your jokes.
- Please understand that insulin keeps me alive while simultaneously trying to kill me.
- Please hear how sad, drained and beaten I am even though I won’t show you.
- Please FDA, stop thinking of continuous glucose monitors as a luxury.
- Please insurance, cover my drugs and supplies.
- Please someone take this day and focus for a moment on the world wide tragedy that my family happens to be trapped in, through no fault of their own.
Therein lies the the problem today. Diabetes is a world wide tragedy but you just can’t say those words in the face of another world wide tragedy like the one that occurred in Paris yesterday. You just can’t and you probably should’t. Yet I wonder in the same breath how do we shut down the desire to take the opportunity? How can we sit on our hands when this was to be the day people were going to be open to listening, to acting? How do you do that when you need a cure so badly that you want to cry almost all of the time? How do you do that when it is your child, mother, husband and friend that you are banging this drum for? How did terrorism effect diabetes advocacy and cause great people all who live with this chronic illness to turn on one another on the very day that was set aside for them to unite. All we wanted to do today was speak, to reach others and say please see diabetes for what it is and help if you can. Understand if you can’t help. Advocate for me and please spread this message beyond those who already understand it far too well. Today feels like the day that it is possible to reach a person who would make a diabetes joke offhandedly and help them to understand just how egregiously they misunderstand a life with diabetes.
You may believe that it is in bad taste to say Happy World Diabetes Day to someone today, you may not. You may wish that your friend’s avatars were blue yet understand that they are adorned in the colors of the French flag. Perhaps you are feeling like your opportunity has been stolen and at the same time know that it is inappropriate to make that statement when people’s lives have been stolen. What all of of this means is that two unthinkable tragedies have met and the honest truth is that they are both terrible. Trying to judge one against the other is a futile act. You can try to make an argument for one side or the other but really, what would that accomplish besides diminishing something that you don’t want to diminish. The only real answer today is to live and let live, which if you think about is a thought that would have saved not just the people of France but everyone who has ever been touched by violence. The best thing to do today is act as you wish the world would, with peace, understanding and humanity for all. Live and let live because judgement always leads to a ruling and we don’t need to be ruled - not on this day or any other.
Scott
It's a Diabetes Shoelaces Extravaganza on Arden's Day
Watch the video and then I'll explain...
So like I said in the video the cost of shipping is falling to my family, Usually we'd eat the cost but it's going to be a bit much so when I figure out how to do this... the one provision will be that anyone who wants a pair will have to pay the shipping costs - I'll know how much that will be next week.
Here's the next part. On Monday I'll be speaking with some people from Novo and I'm going to try to get them to see how popular the Novo #LaceUp4Diabetes laces are in the diabetes community. My hope is to talk them into making them available on a much larger scale in the future. With that in mind, it would be a huge help if you took a moment to let Novo know, here in the comments, how much you want the laces!
A huge thank you to Novo Nordisk, my wife Kelly and the great people she works with for giving up their laces for the DOC!
Day Of Diabetes: World Diabetes Day Edition
Six years ago I began this blog with the intention of sharing every diabetes related moment that happen to us over a twenty-four hour period. I planned to share our day with diabetes with my friends and family but didn't have one idea about what I was going to do after that day ended. I had never read a blog, didn't know another family who lived with type I diabetes and only ever saw two message boards in the Internet. I had no idea what my sharing would introduce me to or what meeting all of you would one day mean to me. So many diabetes related events happened in the first few hours of August 16, 2007, that I had to stop before the day was over - but that was on my first day.
Today, I think I can make it for twenty-four straight hours... One full day of sharing to help bring awareness to the the world of type I diabetes. Every moment of our World Diabetes Day that is touched by type I diabetes, I will share as an update here on Arden's Day and other social media portals that lend themselves to the moment. Twitter, Facebook, Instagram, Tumblr
If you want to follow along or share the posts, I'll be hashtaging them with #DayOfDiabetes - Many other DOC members will be doing something similar today, please support them as much as you can. Here we go!
#DayOfDiabetes - Just 39 minutes in and diabetes is already making noise.
#NDAM #WorldDiabetesDay
3hrs 30min since snack time insulin. Going to wait up a little longer. Tonight may just go well. #dayofdiabetes
1:33 am. Arden's BG is drifting lower. Temp basal, off for 30 mins. I'll listen to some music and check again in 30 mins. Eyes starting to hurt.
BG is steady at 95. One last temp basal, off to sleep. now. getting up in 4hr 45min. #DayofDiabetes
I overslept. Sometimes staying up until after 2 am can do that to me. Was woken finally by Arden's DexCom. Not only did her BG slowly drift to 196 by 8am but it wanted me to know that the sensor needs to be replaced in four hours. Thing is, we use that sensor to get through the school day. Going to have to reset it and set timers for extra testing.
Arden couldn't take her chewable vitamin this morning because her BG was 200 and they are 6 carbs, would require .45 units of insulin and hinder the bolus that is working for the elevated BG - vitamins. #DayOfDiabetes
Currently trying to decide what caused morning rise.#dayofdiabetes
The popcorn Arden ate before bed resolved almost perfectly. I set a decreased temp basal at 1am that seemed to work (Happy enough with the 150 range). Guessing the AM rise was not due to temp basal at 1am. If I hadn't overslept I could have boluses it just as it began and I think the 8 am number would have been around 140ish.
Timer just sounded. Arden will be testing in class and sending me a number in a moment. #DayOfDiabetes
Working on high BG from AM & getting ready for snack.#dayofdiabetes
On the phone with DexCom to deal with transmitter battery message. #DayOfDiabetes 10:28am
Arden just texted, CGM is ready to calibrate. She is testing now. #DayofDiabetes
I’ll have a #Dblog up in 20 mins about the last 1/2 hour. edit: Here it is LINK
#DayofDiabetes
Arden is at lunch, CGM is back and new DexCom transmitter has been ordered. This looks like a safe time for me to take a shower. #DayofDiabetes
Post Gym CGM check 97. #DayofDiabetes
I just entered Arden’s post gym BGs in the #BigBlueTest #DayOfDiabetes
Arden is on her way to the bus port. Just sent her CGM, we made an adjustment/bolus and she will be home soon. #DayofDiabetes
CGMnow 90 mins after Chinese food, 84. Small snack going in. #DayOfDiabetes
Arden is in bed, had to bolus again for an elevated BG. I’ll check on her in a little bit. #DayodDiabetes
Feel World Diabetes Day 2012
I've spent some time recently thinking about what World Diabetes Day meant to me, what did I want from it, what did I hope it's existence would leave for those that witnessed or participated. On Monday night I found the answer to my question...
Arden brushed her teeth before bed, she put on a silly pair of pajamas and climbed under the sheets. Her voice called to me and said that she was ready to be tucked in. When I entered her bedroom she had the lights out, her face was illuminated softly by a stream of dimmed light from the hallway. Her eyes were closed, she was pretending to be sleeping so that she could try and scare me as I approached. I stopped halfway into her room to tease her, she was trying so hard not to move, carefully holding her lips together so that she wouldn't smile. I looked at her face for a long moment before I sat next to her so that she could scare me. She popped up, I acted frightened, and then we laughed. We talked about the next morning and she expressed how happy she was that I was able to schedule a play date for later in the week with one of her friends. It was a wonderful few moments, some of the best that I had that day.
Our party was crashed seconds later by the electronic beeps of Arden's CGM. Three beeps to be exact. It's urgent bells told me that her blood glucose was falling, I looked at the clock but I knew that it was doing so far sooner then I planned. Those beeps brought me right back to reality. We tested and continued to mess around, Arden's spirit was unchanged. I decided that Arden needed a juice box, she didn't want it, actually Arden hasn't enjoyed a juice box in some years because they feel like medicine after all this time. I could tell by the slight change in her face that she didn't want to drink the juice but she didn't make a fuss. I smiled and continued to talk about the next day as she forced herself to drink. It occurs to me now that we were both putting on a brave face for the other.
I hope that World Diabetes Day allows one new person to see my blog today, anyone's diabetes blog really. I'd very much like it if as many people as possible could understand more about type I diabetes. I'm not talking about the tried and true stuff. No talk of how many shots or pokes, those things suck but you can't fully appreciate them if they aren't your reality. But feelings, we all understand feelings.
This may seem on the surface to be a minor thing, a petty inconvenience but please trust me when I say that it's very much more. I sat on the left side of Arden's bed as she forced down a juice box that she didn't want. She did it so that she could go to sleep without worrying that her BG would fall to a dangerous level, she did it because she had to, did it because that's what she does. She tried to keep the happy in her face, tried to hold on to the joy that we made together only moments before. She did a good job, I may be one of the only people in the world that could have seen through her mask.
Watching my daughter with that juice reminded me that there are forces in each moment of her day that manipulate her life. These moments aren't scripted, we don't know when they will happen, how they will end or if we are responding to them correctly. They demand that we stop living and pay attention to them so that we may continue to live. It probably only took her three minutes to consume the juice, but those minutes and all of the ones like them, they steal from us and they take more then time. My hope for WDD is that someone takes the time to understand a little better that which is the life of a person with diabetes, and that they feel as best they can what it means to carry type I through each day. I think that understanding will make an advocate out of even the most casual observer, and that understanding will lead all of us to a brighter tomorrow.
Arden hates drinking juice, I loath having to ask her to do it. Each time acts as a mallet that strikes at my soul. I can't be sure of what it does to Arden, I probably couldn't handle knowing. Please don't think of this as a story about a juice box, it's a story of a chronic disease and it's effects on an innocent person. I began this post with the intention of describing the sadness that watching diabetes do what it does has on me, but I can't find the words. I guess I'll simply say that it hurts, physically hurts me. It changes me. Some days and in some ways for the better, sometimes for the worse, but I am inarguably changed.
November 14th is World Diabetes Day, November is Diabetes Awareness Month, people that live with diabetes do so bravely each and every second of their lives. Please try and feel what that means, let it change you.
WDD: Hero of the week
The International Diabetes Federation is asking, "Do you know someone that is active in promoting the diabetes cause or that are engaging, motivating and leading others to take steps toward creating healthier lives". If you know someone that fits this description please nominate them at this link. There are so many "Diabetes Heroes" in the DOC, please help to get them the attention that they deserve.
I want to thank the IDF for the unbelievable pleasure that comes with being recognized by them and for the honor of being called a "Diabetes Hero". I am humbled by this distinction and I hope you can take a moment to visit their site and learn more about their amazing efforts in the diabetes community and the world.