Tuesday, November 12, 2013

Lynch Syndrome, Facebook, and Washington DC

In no way could I have ever imagined that 3.5 years after Mike was diagnosed with colon cancer I would be heading to Washington DC with a group of nearly 40 other people from around the country.  None of whom I would have ever met if it weren't for Facebook.

Following Mike's diagnosis of Lynch Syndrome, I spent countless hours online searching for information.  At some point a Google search brought me to Colontown.  Little did I know that one click of "Like" on a Facebook page would provide so much information and support.  In "Lynchville", a neighborhood of Colontown I found other people living with Lynch Syndrome either personally or because someone they care about has it.  Some had been through an unbelievably difficult time and came out swinging and ready to fight - in a positive way.  Regardless of the journey, the overwehlming "vibe" is one of support, compassion, humor, honesty and love.  It was easy to feel at home.  

Meeting people online is obviously not the same as in person, but you still build relationships.  Close relationships.  Many of the people I will never meet.  Others I met at the Lynch Syndrome conference in Minneapolis in September.  This week I will meet many others as we invade Washington DC to advocate for medical imaging and radiation therapy services.  Seeing so many people I already feel a connection with who all share a desire to make a difference is huge!

With Veteran's Day yesterday and flying to our Nation's capitol today I have an overwhelming sense of gratitude to those who have fought so that we have opportunities like this.  We live in a country where we are encouraged to meet with Congress and tell our stories.  For policy makers to hear first hand from those who's very lives (or the lives of loved ones) depend on getting the right scan at the right time.  Affordably. 

Obviously, our government is not perfect. After all, it's run by human beings and Lord knows none of us are perfect.  But, will our group make a difference?  Absolutely.  Will we know what kind of difference we are making?  Maybe.  Will I be changed by this experience?  I'm counting on it.