Conquer Chiari ~

Next Saturday, September 22nd is the annual Conquer Chiari Walk Across America.  

 "The Conquer Chiari Walk Across America is an annual fundraising and awareness event comprised of a series of local walks held on the same day. In 2011, the event was held at 47 different locations, involved more than 5,800 participants, and raised over $405,000. We are proud to say that 83% of the money raised will be used directly to fund research projects and that only 17% was required for overhead and expenses. This year the walk will be held on September 22nd, and it is our goal to raise at least $450,000 for research "

Each year I put off blogging about the walk ~ you see ~ fundraising is not really in my wheel house ~ but how can I give you the chance to donate and support the quest to find a cure and boost awareness for Chiari Malformation if you don't know about it? Click on the link below if you would like to sponsor me and donate to help Conquer Chiari

 

https://www.conquerchiari.org/ccwaa12/LacieHeiser/donate/
 

Post Brain Surgery 2008

I wanted to write something meaningful and inspiring about Chiari, but honestly I just don't have it in me this year. The picture to the right was taken a couple of days after my brain surgery in December of 2008. I was thankful to be alive ~ waking up from brain surgery was the toughest thing I've even done and as close to death as I ever want to be in this lifetime. I was optimistic at the time ~ after surviving brain surgery, the rest of life is cake, I can do this!

Physically, I've healed from the surgery ~ but know full well that surgery was not a cure ~ there is no cure for Chiari but there is always HOPE.  This has been my mantra, but it's been hard to believe, especially this summer. It's been a particularly difficult summer symptom wise. I've been plagued with a heavy dose of vertigo and headaches that won't go away. There's no reason for the sudden onset. My newest MRI revealed nothing new in my brain ~ just a constant reminder that Chiari is here to stay ~ like it or not!

Zipperhead 2008

Just last month my youngest daughter had an appointment with a neurosurgeon so that we can get her in an annual cycle to keep an eye on her brain tail. I am consumed with guilt for passing along Chiari to her and pray that a cure is found before the day comes when she might need surgery. Chiari has robbed me physically, emotionally and spiritually; I hope that through research they will find a cure some day soon.

Until that day ~ I have vowed to never give up living ~ pushing forward ~ experiencing as much of life as I possibly can. In the famous words of Morgan Freeman,

Get busy living or get busy dying!