JDRF Speaking Event Wrap Up
A huge thank you to the New Haven Connecticut chapter of the JDRF for inviting me to give the keynote at their 2015 annual meeting!
I took the opportunity to thank the nearly 100 advocates in attendance for their time, effort and selflessness. I shared with them how their dedication has helped Arden and how, in turn, I've shared our lives with all of you. Then I told them about some of the amazing things that you have accomplished and shared with me - Full-circle advocacy - I wanted to leave them with the feeling that their local efforts reach much farther than perhaps they realize.
and I took a few pictures for you to see...
I spoke a bit about my time at this event in episode #20 of the Juicebox Podcast - links to podcast episodes are below...
Learning to Live with Diabetes
I didn't expect to be so deeply effected when I spoke to a group of D Parents.
Way back in January I received an email from a lovely woman named Carla who is a D Mom, an advocate and a volunteer for a charity called Learning to Live that helps children with diabetes. Thing is where Carla lives, they call the charity Aprendiendo a Vivir because it's in the Dominican Republic.
Carla's email asks if I would come and give a speech at an event they were having that concludes with a 10k. My short answer was, "I'd be honored, but don't speak a word of Spanish and I don't run".
Carla didn't care, she said they would find me a translator and I could walk the 10k. I found apprehensive about traveling to a place where I would mostly be mute, invited by a stranger who found me through my book and blog – but something told me that I should go, so that's just what I did.
I thought that I was prepared to meet children who have limited access to diabetes care and supplies. But when I arrived on the island and began to talk to the people who run the charity, I quickly realized that I didn't - though I thought that I did - have an appreciation for what having diabetes outside of America meant.
Dominicans who do not have private insurance or the means to provide for themselves rely on local hospitals for their supplies. It is not uncommon for a person to receive thirty test strips per month – one a day. That concept overtook me and I struggled to imagine how I would best utilize one test strip a day, keeping Arden healthy with only one strip seemed impossible.
I heard stories about children dying very young from completely ignored diabetes, families that weren't educated about the diseases but trying and others who were culturally predisposed to accept that life with diabetes meant that it would be greatly shortened. After seeing first-hand what having diabetes in the Dominican Republic was truly like and hearing about families, some who existed on the equivalent of one thousand dollars annually; I returned to my room on the first evening of my visit and threw away my speech. I'm still not sure if anything I said the next day was helpful, but I tried my best to relate our experiences in a way that would make sense to the parents listening.
Aprendiendo a Vivir was founded by a young man named José who happened to be studying in America when he diagnosed with type I, when he returned home and saw the difference between the education, tools and understanding that he was given in the U.S. and what was available to his fellow countryman; he sprung into action and created a network that supports children with diabetes in a way that left me awe inspired.
I was so concerned when I stepped onto the stage that what I was about to say wouldn't translate both in language and spirit but when I finished speaking a young mother brought her little girl to me so she could show me her insulin pump. She was very proud of her daughter's pump because their aren't many people living on D.R. that can afford one. I sat down on the edge of the stage and found a picture of Arden with her pump to share, when I showed the little girl Arden's picture she just smiled and hugged me.
A moment later as I walked through the crowd a mother stopped me to say thank you for mentioning that diabetes doesn't make you a broken person. She confided in me that her grown son's father is not accepting of his diabetes because he see's him as damaged. She added that it made her happy to see a father supporting his child with diabetes. I didn't quite know how to respond, so I hugged her just as the little girl had hugged me. We both cried.
As it turns out, it didn't matter that I don't speak any Spanish.
More images from the event can be found in my Image Gallery here.
*I misspoke during the address, Kris Freeman is a 4 time Olympian, not a 4 time gold medalist.
Ganémosle la carrera a la diabetes (Lets Beat Diabetes Race)
I'll be speaking in Santo Domingo, D.N. this weekend at the Ganémosle la carrera a la diabetes.
One goal, inspire and support people living with diabetes! @DOCIRL
The air left the room
In honor of my promise to be as open as possible for Diabetes Awareness Month, I'm going to tell a story that I may not have shared otherwise.
Last night I spoke to a lovely group of woman at their Federation Woman's Clubs meeting. I was invited to speak about publishing, my writing process and to tell some stories from my book. The group was wonderful, engaged and we were having a grand time when I said this in the course of a story, "...my daughter Arden was diagnosed with type I diabetes that year".
The air left the room.
I paused and my first inclination was to say, "No, it's alright... she's doing great" and because of the situation, that's exactly what I did. But it's not "alright", is it?
So this post is for anyone that doesn't know what a day in the life of a person living with diabetes is like... This one is for Awareness Month.
Insulin is fantastic, insulin keeps my daughter alive. - It's also very dangerous. If a person were to take too much insulin, they could die. My daughter takes insulin between ten and twenty times every twenty-four hours. I think about that constantly. Please understand, I'm not burdened by it most days but the thought is with me always.
Imagine if you had to remember to breath or consciously tell your heart to beat... that's what it feels like to love someone or live with, type I diabetes.
When I open my eyes in the morning diabetes is my first thought, I think about it when I'm walking to the bathroom at four in the morning, while I'm driving, grocery shopping, watching television, waiting in a line for a movie - when I wash the dishes, take my dog outside... I think about it so much that it feels like I drank a bottle of diabetes and then tried to eat - everything tastes like diabetes. It permeates life.
I consider diabetes with every decision that I make. Travel in a car, meals, sleep, I even think about it as Arden says, "I'm going to go get the mail". The mail. I stop and think about where her blood sugar is, before she walks to the street to get our mail - something that takes two minutes. Because, what if that's when we miscalculated her insulin. It has to happen some time, right? No one is perfect and not every carb is created equal, eventually we are going to bolus too much and she is going to experience a low blood glucose. Will that moment merely bring on rapid hunger, will she get dizzy, become disoriented? Will she have a seizure? What if no one is there?
I don't know either, so I think about diabetes all of the time in an effort to stay a half of a step ahead of this disease that doesn't seem to follow the same path twice. Yet, when the air left the room I said, "No, it's alright... she's doing great", because Arden is doing great - but I just wish that everyone knew what that meant, in our terms.
Update on 2013-11-06 00:59 by Scott Benner
Post by Arden's Day.
I want to say hello to those of you who are finding this post via a Facebook share and invite you to follow Arden's Day on Facebook. (Hi to everyone else too and thank you for making this post and Arden's Day so successful!).