Saturday, April 26, 2014

No One Quits

How did I get to ten days post op?
The entire surgical process is fading into my memory. 
Mercifully, God has hidden some of the events of the past several days from me. 
Mercifully, He has also allowed several to remain. 

Consistently across the span of the last few weeks, I've sunken into the depths of despair every day. 
Not really a "Why Me?" pity party...
More of a "this is to big for me to carry", hopeless, helpless feeling. 
The feeling of wanting to share this burden of sorrow, yet wanting to also hide it from the world. 
Like I told Bob yesterday, "I just want to lay here and cry for no specific reason"
Not because of the pain, or even the knowledge that this will likely be a lifelong battle, that very few people can state they are "cured" (and of those who do--it rarely lasts very long). 
Crying releases a dam bursting  under too much pressure. 
Crying somehow validates that I can't carry this  burden alone. 
Crying gives me the permission to not be "brave" or "strong" or to wear that ridiculous mask of happiness that I feel is expected from me. 
Crying is a gift.

Last time I had surgery, in January 2013..I blogged more frequently and earlier after surgery. 
I wrote every thought, every ache, pain, wound, realization and "Ah ha!" moment.
Either here or on my CaringBridge site...many people followed as I chronicled the event. I had so much to share, so much to learn, so much to give. 
This time has been so very different. 
Yes, my eyes have had difficulty with electronics so that kept the writing at bay. 
At the same time, I knew I had nothing to really share.
I needed to soak it all in and regurgitate it in a way that really spoke from my heart. 
Not just a timeline of events and milestones. 
I wanted to share my heart in an unmistakable way, in a way that moves people to action. 
As words evolve from my keystrokes, I wonder if I can do justice to all I feel. 
My blogging seems redundant and pointless. 
I'm living in Blah-ville.  
Tears are rolling down my cheeks from some indescribable grief. 
I ache.
I'm tired of this. 
I'm tired of seeing the purple flame on Facebook (signifies the death of a person with Chiari), 
I tell some friends/family members..another one of us passed away. 
They look at me with pity and say nothing. 
My phone rings--I look at it. I recognize the name.  They are going to ask how I feel. 
I let it go to voice mail.  Talking is difficult and talking without crying is impossible.
More tears roll down my face. 
My head is throbbing now. Too much crying. 
Time passes too slowly. 
I have foreign objects in my brain now. Permanent foreign objects. 
I'm the brain surgery girl. 
Overheard on the elevator the other day:  "Why do you think she has that bandage on her head? Poor thing! How sad!" 
Who would've ever thought it?  
I listen to the voice mail from the caller I avoided. 
They say they hope I'm feeling better, that they are praying for me and sorry for not calling sooner-but they've had their own issues to deal with. 
Really? Who says that? 
I've had my own issues too--like having my skull cracked open.
Bitterness slips out of my mouth-as soon as I say it, I admonish myself for being so self-centered. 
This is MY world--not theirs.  Everyone has their issues. 
Funny how mine are more important to me and I'm okay with that..but I resent it when others behave in the same fashion- placing priority on their issues. 
How can they act normal when I'm suffering over here?  Can't they see, hear and feel my suffering?
Now, not only do I have foreign objects in my head, but I'm selfish too. 
I slip down a few rungs on the ladder of despair and cry more. 
This is getting out of hand...and my head hurts like hell. 
I silently pray for forgiveness for my self-centeredness, for using profanity both silently and audibly, 
for not being more grateful and I ask for God's help with the bitterness, the sadness and the disappointment with myself and others.  
I turn off the light and try to nap. There is no comfortable way to rest my head.  it feels like one big, throbbing bruise.  So, I cry some more. 
Hot tears on my cheeks make my face feel tight..I hear my own voice in my head..
"No one quits--No one quits..Not today!"

I know my writing is usually a bit more informative, more fact related, more educational...and I'm sure I will get back to that. For now, this is my outlet. As my body physically heals, 
I also need emotional and spiritual healing. 
I feel my life has once again been spared.  I am seeking purpose in all of this. 
If you have been where I am, I hope it helps for you to know you are not alone. 
Some of our Chiari sisters have taken their own lives because of the pain, isolation, feeling they were a burden.  We all have these thoughts cross our minds.  We are all subject to despair, sadness and shame.   I hope you find refuge in my writing and I hope on your darkest days you are able to look in the mirror, wipe aways your tears, pull yourself together and say, "No one quits--No one quits..Not today!"

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