Below are my remarks from e-Patient Connections 2012. I was at #ePatCon as a guest of WEGO Health where I was recognized for being the 2011 Advocating for Another award winner. The occasion presented me with the opportunity to speak about what my advocacy means to me. Below are my remarks as delivered.
Hello... My name is Scott Benner. My daughter Arden is eight years old and she was diagnosed with type I diabetes just after her second birthday.
Our life with Arden's chronic illness fills my heart with so many conflicting emotions - Feelings that don't seem like they should be allowed to inhabit the same space. Love & pain, anxiety & hope, sadness, personal growth...are just a few of the adjectives that describe my families day.
I open my heart and give a voice to the struggle on my blog to hopefully show the world what Arden's life is like so that others may understand, so that my fellow CareGivers, the ones that don't have this voice or perhaps don't want the attention can know that their pain isn't theirs alone to endure. This is a life that often is too much for one person to bear, but together,..... together we are stronger and more determined then our illnesses.
Social media saved me. When we share, when we let others see our real and honest human struggle... it helps people. It builds community, creates a support system, provides relief, connection, love... and I am recharged by the knowledge that when I write, my words create hope... and I am saved as well.
I think that I was awarded the 2011 WEGO Health Advocating for Another Award in part because I don't write about numbers, I don't pretend to know all the answers, I just say, "this is how diabetes made me feel today... Maybe you feel like that too." And I hope that knowledge, that simple act of letting screwed up feel normal... helps someone to feel anything other then alone.
I am transparent on the Internet because helping others is the only thing that I've found that makes my daughter's illness not seem arbitrary and cruel.
I want to thank Jack and WEGO for this honor and encourage all of you to support social media in anyway that you can. It's so simple that it seems like there must be more to it, but there's not. We are the only ones standing in the way of helping people with the full power and possibility of social media and patient bloggers.
The diabetes online community saved me and I'm doing my best to give others the ability to say the same. All you have to do is ignore your fears and run forward and you'll be doing the same.
Hope lives online.
My pictures from ePatCon are available on Instagram, Arden's Day and this PhotoStreamthat I used during the conference to make images available to all as they were being taken. Don't be surprised if you see some familiar faces!
WEGOhealth covered my lodging expenses and travel for the conference.