Saturday, March 1, 2008


What does it mean to be a survivor?
noun ~ one who lives through affliction
verb ~ to remain alive; to carry on despite hardships or trauma; persevere; to live; persist; to cope with a trauma or setback; to outlive

Considering the definitions above it's safe to say that I am a survivor. I can add 'spinal detethering survivor' to my growing list. But wait ~ since I have avoided brain surgery does that make me a 'brain surgery survivor?' Those of you who have had brain decompression probably totally don't agree with me at all ~ and I totally understand where you are coming from. It's a right of passage!

The old survivor guilt feeling is creeping back again ~ I know ~ it sounds narcissistic ~ but I know this feeling. I felt it when my brother died when I was two years old. Why was I left here on earth to live and he died? Then again I felt cheated when my labor/delivery of my first child ended in an emergency c-section to save both of our lives ~ again ~ I survived a near death experience ~ but felt cheated out of going through the whole natural child birth experience. That's a HUGE right of passage ~ I was up for the challenge ~ but God had other plans for me.

This brings me to today ~ it's been exactly one month since my spinal detethering. They knocked me out ~ opened up my back ~ exposed my spinal cord ~ detethered me ~ then I woke up. Alive ~ survived ~ again. I spent 17 months preparing myself for the decompression brain surgery that was scheduled for March 7, 2008. I was ready to hunker down and just muster through it all. Then ~ all of the sudden ~ my surgery has been canceled and I don't have any more Chiari symptoms! Just because I don't feel the effects of my dear brain tail doesn't mean it's gone ~ it's still there, but now it's fully hydrated and happy. My brain tail has received a last minute stay of execution from a call from the governor ~ so the brain tail has survived a near cauterization! Survivor

You can dismiss my post as the rambings of a fully hydrated brain tail ~ me, I am pondering my responsibilities as a survivor and how I can give back others who are going through hardships and trials.


KIMBERLY said...

Hi there. You had commented one of my posts on the msn chiari site. i have your blog on my favorites. my chiari has changed so rapidly within the past few months. i have started blogging too. you have been an inspiration to me. i live in nc. i am going to have decompression asap. just scheduled for the 12th. so anyway just wanted you to know i have been checking on you for the past few months. i am so glad you are a survivor. you are. thank God for surviving.... if you want to look at my blog... it is

thanks and continue to get better.
kim hocutt

Jenn Ann said...

Kimberly's comment is a perfect example of what I was going to comment. Your blog is how you are giving back. I continue to get emails and comments from other Chiarians who have stumbled upon my blog and were happy to find someone who had gone through similar experiences. I felt as you do, you've survived, now what? It's amazing that blogging has connected people from all over and given strength to those who felt so alone.

lzwitty said...

I'm SO happy your brain surgery has been canceled! What an incredible blessing! The best advice on where you can go next is to continue to go to the Lord in prayer. He'll reveal His plan to you. Just listen.


Queli said...

I get the survivors guilt at times too!
Yeah you have a responsibility, and what an awesome woman appointed for the job!
I am so glad you are symptom free! What an exciting message you have to spread!!!!!!!!!