Big Brains Unite!

Chiari is part of my life now, this I know.  There are days that I except it and days I do not.  But yesterday I was proud of it.  The Conquer Chiari Walk Across America was an event to help raise awareness and money for Chiari.  I knew this when I went.  I understood what it was before I got there.  What I didn't expect was the rush of other feelings I felt while there.

Pride.  How in the world could I feel proud to have a condition that not only required brain surgery, but comes with the knowledge that I am always at risk of needed it again?  Well I was proud.  I walked that walk with purple beads that signified that I had Chiari and I was proud. 

Belonging.  I have been blessed with some of the most supportive people on this planet.  My life is full of love and happiness but since I was diagnosed I have always felt a little out of place.  Sometimes it is so hard to talk about having Chiari.  I know there are people out there that are sick of hearing about it.  That think I am whining or blowing it out of proportion.  But sometimes it is all I can think about.  But yesterday, everyone I saw with purple beads, knew exactly how I feel.  They have felt the fears and the sadness.  They have had to mourn for the life they used to have and the one that they will never get back.  They have felt the roller coaster of emotions that comes with the weeks of recovery.  One smile from someone who had the purple beads, and I felt peace.  It was an amazing experience.  Side note: About halfway through the walk I almost turned around and walked the opposite direction.  I am used to being unique.  The walk was full of people with Chiari...I could only handle being "normal" for so long.  So of course walking backwards was my only option at that point.

Love.  My crew was amazing.  They drove from all over to be there for me.  They rocked my awesome shirts and supported me.  What an amazing feeling that was.  I am so thankful to each and everyone of them.

And finally hope.  For me, the most difficult part of having Chiari is the hopelessness that I sometimes feel.  Even in my happiest moments there is a cloud.  A cloud of fear and uncertainty.  A fear that one day I could lose it all.  One of the things that my doctor told me about the surgery is that most patients experience periods of relative stability.  Let me translate: "You will have this suckish and painful surgery and fingers crossed feel somewhat better for a period of time, not the rest of your life, but hopefully a while".  So while most days I am thankful to be doing as well as I am, some days are just hard.  I want to enjoy my life, but sometimes I am afraid to get too comfortable.  I have plenty of friends who have needed multiple surgeries and it terrifies me.  But yesterday, I felt hope.  To be in the company of people who are so strong is a life changing experience.  We walked together, united in our fight to find a cure.  Determined to fight for those who we have lost and desperate to find a cure so that we do not lose anymore.  I have heard that there is strength in numbers and I felt it first hand yesterday.  We made a difference.  We raised money and raised awareness.  While I have wished at times that I had never heard the word Chiari, yesterday I felt hope.  The purple ribbon that ties us together is the same ribbon that will give us hope.  As long as we have each other there will always be hope.