I've had great support from people I've never seen..some I've never talked to in person.
We blog, text, Facebook...but not real contact..yet it is very very personal.
One of my Chiari sisters..I didn't ask permission yet, so I'll just call her T...She is having surgery soon..It's been scheduled for awhile now.
However, the dr. called to set up her pre-op appts and now it has suddenly become real.
If you've been decompressed, or had your zipper installed..what ever you want to call it..
You know this feeling.
For so long you fight for a diagnosis, then for treatment.
You joke about brain surgery and the zipper and your haircut .
But there is that moment when it becomes real.
A dagger goes straight through your being...not your heart...your entire being.
You are facing brain surgery.
Your mortality is suddenly shaken.
This is serious stuff.
The only people that really get it are those of us that have lived it.
We know the fear, making out your will, writing letters for loved ones just in case, making out an advanced directive..choosing songs for your potential funeral.
These are all things we should do as responsible adults.
However, we are able to deny and rebuke death on our terms (or so we think) until
our neurosurgeon puts a potential date on it.
The number looms in the future and a mordbid countdown begins.
Well, what I want to say to you..and to T..and I did say this to my friend Melissa (who I know doesn't mind me mentioning her name)..is that on the day of surgery..
A peace sets in. Like you can not imagine..and you are carried through it.
Literally, I was held by God's grace through the power of prayer and I sailed through the steps until waking up in ICU.
My first thought, "Wow-that was easy!"
Not for my family that had been waiting for 7 or so hours..
SO if you are facing this surgery..and you are feeling alone..I am here for you..
Support is available online with chiarisupport.org, on FB with ICA, The Constricted Cranium, Texas Chiarians, Chiari Warriors, Chiari-Life, Blogs like Dave's Big Brain and Life Without a Dress Rehearsal.
We are all here for you.. Let us support you..
Our spouses will talk to your spouses..we will get you through this time of uncertainty.
Please just let us be there for you.
I'm praying for you T.
I'm praying for Melissa..still in the hospital in Houston.
I'm praying for David Waters.
I'm praying for faceless and nameless Chiarians I've yet to meet.