Conquering Chiari One Step at a Time

Chiari.  Chiari.  Chiari.  If you have not yet heard of it, we must have never met.  Chiari is my life.  No, I don't mean there is nothing else in my life, just that Chiari is a part every aspect of my life.  This month has been a roller coaster.  And not the super cool roller coasters that I can no longer ride, but a busy whirlwind month.  Crystal and I got approval to host our very first Conquer Chiari Walk Across America in Fresno.  We are so excited to be able to spread awareness and hopefully help raise some money for the cause.  And if you have met me, you know I cannot do anything normal.  I will settle for nothing less than going BIG. 

Promo video.  Yes, a promo video.  Like a real video to help people understand the seriousness of the condition and why they should help out.  As far as I know, one has never been done.  In my many blessings, I have been blessed with some remarkable friends.  And these remarkable friends just happen to produce video productions.  So I called in a favor and WHA-LA, we shot the video in LA a few weeks ago.  It was an amazing day.  Not only were we working on a video that could help spread Chiari Awareness, but we got the chance to hang out with fellow big brains!  Now, for those who have never faced something like Chiari, or any other disease/condition, you may not fully appreciate what it is like to be in the company of people who know exactly what you are going through.  It is inspiring.  For one whole day, we didn't feel alone.  I have been blessed with some amazing people in my life, but they don't always understand what I face on a daily basis.  And to be honest, that is OK.  I would never want them to understand because that would mean that they had it.  But to be in the company of people who not only understand, but also just shine with positivity is truly an amazing experience. 

Newspaper domination.  That is my goal, the first of many steps to complete world domination.  I met with Tammy again for more articles.  She is a local newspaper reporter who has helped cover my story in the past.  And boy is she a firecracker!  It seems I may have touched her heart because she is now dedicated to helping me spread awareness.  What an awesome friend she has become.  She is using her voice to help our cause.  That is why I try to find the positives when I tell my story.  Truth is, people are tired of hearing only negatives.  It starts to sound like whining, even though I am guilty of that at times too.  But when you are fighting for a cause, your voice needs to have some positives.  You have to try to inspire people to want to help.  It isn't always easy to find the positives in Chiari.  But they are there.  And as long as we are constantly looking for them we will continue to have hope.  Without hope, Chiari will always win. 

Chiari sucks.  Some days are better than others.  Some days are just plain horrible.  Chiari robs you of the ability to be who you want to be and who you once were.  It is easy to fall into the "poor me" trap.  I must admit, I do that from time to time as well.  But when you surround yourself with people who exude positivity, your life is enhanced.   I have seen the suffering that Chiari can bring.  I know so many people people who have faced multiple surgeries with no real improvement.  And it is hard.  But on the days where the pain is too much, or the uncertainty of the future starts to weigh on my heart, that is when I reach out.  To the ones who will lift me up instead of helping me to feel sorry for myself.  To the ones who find the wins in the smaller battles.  Chiari may have the upper hand in this war but if we can find hope in the smaller wins, we will always keep fighting. 

The following pictures are pictures of my team shirts from last year.  Going to rock them again this year!