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 something..like 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!"

"Politics makes strange bedfellows" -- Charles Dudley Warner

I guess we've all heard this famous quote by C. D. Warner. 

"Politics makes strange bedfellows." 

Honestly, I had to look up the quote to see who actually said it. 

I've spend the past 12 days either preparing for surgery, being tested for surgery, having surgery or fighting off the pain of surgery. 

What does this have to do with politics?  

Nothing.

It's more the "strange bedfellows" I'm  rolling around in my head. 

The invisible tethers that lately have bound me to total strangers-

Ties that are strong and unbreakable that will join me with people I would have never met otherwise. 

Friends/family of choice rather than blood lines or acquaintance. 

I feel blessed, fortunate and smiled upon by God to have met these bedfellows.

I see just a glimpse of what He has in store for me through them. 

I'm not a typical person.  At least I don't think so.  I'm not saying I am above or below average. 

Just not typical.

I grew up in a small, rural community. I had friends there, but never felt I belonged there. 

I yearned for bright lights, big city...excitement, culture, to see things, go places, experience the world. 

I've done just that. 

I've lived quietly in the country and out loud in the city, 

I've gardened, homeschooled and made my own bread. 

I've traveled, stayed put and broken free. 

I've traveled by train, plane and automobile, 

the Metro, the Tube and the Subway. 

I've met strangers, found friends and acquired family of choice. 

I'm blessed. I'm fortunate..and I am real.

 It's the "being real" I'm most proud of. 

So now back to the bedfellows....

Having an obscure brain disorder (or in my case, disorders) has been more of a blessing than a curse. 

I've met the most amazing people along the way. 

A few weeks ago I wrote of finally meeting Katrina.  

After about a year of online banter, we met for lunch. 

Then she opened her home to me. 

Literally.

Opened her home. She picked me up at the airport, took me to her home, I had my own little cabin in her backyard. She fed me, took me to my doctors appointments, had a birthday breakfast for me (with the help of her friend Misty-whom I love, love, love), transported me back and forth from Houston to Dayton to Baytown to Dayton to Baytown..(you get the picture).

I was treated as a queen.  The kindness of a virtual stranger touched my heart in ways I will never be able to fully express.

I sat there, looking at her on my last day at her home..thinking of some of my "lifelong" friends that have never shown me this much kindness, this much love. 

What makes the difference? 

Is it the brain thing? Is it merely the fact that we have similar zippers? If we had met under other circumstances..would we be friends? 

I'd like to think so. 

Is it because we are both realists? Both givers? Both loyal? 

Or because we both know what it's like to be hurt by those people you expect the most from? 

I think it's because we know what it's like to look fear in the face, to not take good days for granted, 

to cry in the shower so no one hears, to feel abandoned by "friends", 

to feel like a disappointment to our spouses and to feel guilty for complaining about our problems when we know things could be so much worse.

I think it's all of the above and even more. 

I'm nine days post op today for my second craniotomy in sixteen months. 

My body is tired, broken and sore. My spirit is wounded, worn and bruised. 

So forgive this melancholy post about bedfellows. 

Attribute it to the pain meds, lack of sleep  or cabin fever. 

But do me a favor- be real. Take it to heart. Pay it forward. 

Either be all in or all out. Be a friend or don't.  Identify who you are to others, who you portray yourself to be in their lives..and be THAT.  You can't be a BFF and not rise to the occasion when the going gets tough. If you can't follow through, get out of the game. 

If you don't promise what you can't deliver then no one gets hurt. 

Everyone is in need of (and deserves) grace. 

Everyone. 

So, Charles Dudley Warner, I beg to differ.  You stated, "Politics makes strange bedfellows." 

I think you are quite wrong. 

I think REALISM makes strange bedfellows. By exemplifying the Golden Rule, following through, offering grace, doing the right thing, showing even the merest form of personal integrity,

We set ourselves apart, strangers to the majority of the world...

When we meet a kindred soul, it doesn't matter the situation, background, race, sex or social standing. 

We become bedfellows. 

We've made our bed--now we have to sleep in it. 

So thank you, Katrina. 

Yes, we are linked together by this  enemy we call Chiari- 

But your personal integrity, kindness and love for a virtual stranger have made you my sister. 

I'm so honored to call you my friend. 

Dr. Kim Visit Results

One of my favorite Grey's Anatomy quotes on an episode that briefly mentions Chiari Malformation: 

  

Now, I'm not saying that I'm not going to get better. I'm not giving up hope or throwing in the towel. 

Anyone that truly knows me can attest to the FACT that I am a research hound. 

When it comes to medical information, I have to be fully informed. I have to be prepared for every doctor's visit, every medication, every procedure. No matter how outlandish it may seem, if I find it on a list of symptoms that even remotely relates to something I, or anyone I love, experience, I'm going to be in the know. I detest being caught off guard. 

I like to excel under pressure, never be at a loss for words (or questions) and never, under any circumstances do I let a physician catch me off my game. 

Well, never --until this past week. 

I had an appointment with my neurosurgeon.  I fully expected a brief visit, focused on the options for shunt placement.  I had studied shunts, VP, LP, CP-anti-siphoning devices, 

This is what I expected:  A burr hole ( just what it sounds like) in the skull, incisions behind the ear, incision somewhere in the abdomen.

THIS I was prepared for.  I had my questions ready. What about shunt malfunctions? Shunt infections? Clogged shunts? Shunt revisions? 

Outpatient surgery, right? Easy breezy. 

Not that I was happy with this option, but at least I was prepared. 

Dr. Kim had other plans. First, He and I sat together and took measurements of my arachnoid cyst. Not only has it refilled, but it is actually larger than it was before surgery last year. The pressure from it is pushing my cerebellum right back down into the foramen magnum, back into the place it was before. Thank goodness it's not down quite as far as before-and Dr. Kim is really pleased with the way that portion of my brain looks. He said it's..in a word, "beautiful". (Leave it to a neurosurgeon to make a brain sound attractive.) He discussed all of the above shunt concerns and stated that he would like to avoid those complications and risks. Instead, he wants to do a different surgery, much like the one I had last year.  

He will go in through the old scar (zipper) in the back of my head and put little tubes in the cyst (like little drains) that will re-direct it into the normal cerebrospinal fluid (CSF) pathway.

This should keep the cyst drained, relieving the pressure on my cerebellum. 

While in there, he will also do a cranioplasty.  This will consist of a mesh plate being put in the little part of my skull that he cut out last time. My cerebellum is kind of slumping into that spot. 

As I'm sitting there, alone, trying to not look alarmed or dismayed, or even slightly thrown by this unexpected turn of events, he says, "Oh and you will need and ECHO (echocardiogram), because I have to go in pretty deep and will need you in the sitting position this time." 

Now, why that is so unsettling, I don't know. 

I left that appointment and drove straight back to the airport. I hopped on a plane and went to visit an old friend. This was pre-planned, as I knew I would want to get a firmer grip on things emotionally before seeing Bob, and besides, as long as I wasn't home, this wasn't real. 

My plan worked out beautifully (not to be confused with the beauty of my post-decompression cerebellum). I greatly needed the time away, just to laugh and joke around with my friend. However, it did make me a bit sad. I've moved so much over the past few years, I have literally NO close friends nearby. Trust me, at times like this-a girl wants her friends. (and her children and her mommy). Wonder what it's like for people who live in the same place with the same friends for their entire lives?  Do they see the treasure that is right before them? 

Surgery will come quickly-it will be the day after my birthday, two days after Bob's birthday, four days after our first anniversary and three days before Easter. (Do you remember enough of elementary math to figure that out?) 

So, for now, we are making plans. We have to decide what to do with our pets for a week or so, decide where to stay in Houston, what to do about Easter, coordinate travel plans with my mom, arrange our loft in a user friendly way, finish our taxes and so on. 

Honestly, I'm still in shock a little. It just doesn't seem real to me that this could be happening again. A little bit of surgery wasn't so hard to conceive of. I just didn't expect this.  

I thought the arachnoid cyst was the least of my concerns, my focus has been on Chiari..so much that I have barely skimmed the surface of the available arachnoid cyst resources.

Times like this I do miss close friends and family,  I long for a home church, and I wonder why we live so far away from everyone we love. 

One thing I know for sure: Whining never got me anywhere.   I know that over the next week or so, things will fall into place.  As soon as plans are in order, I will feel more confident  and will be ready for whatever comes my way.   Having a set agenda, a checklist, a schedule of events is comforting to me.  As a matter of fact, I just scratched off one item: Write a new blog post.---CHECK!

Below are pictures of the last few weeks..and  links to info on arachnoid cysts, Chiari, surgical positioning and my CaringBridge site. 

Thank you for reading and for caring. --M

Links:

Positioning: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265668/

Arachnoid Cysts: 

Webinar by my neurosurgeon: https://memorialhermann.adobeconnect.com/_a976765836/p6tcaue0xgc/?launcher=false&fcsContent=true&pbMode=normal  (this is lengthy, but if you scroll to about 17 minutes in the arachnoid cyst portion starts)

Basics:   http://www.columbianeurosurgery.org/conditions/arachnoid-cysts/

Fenestration:  http://arachnoidcystawareness.com/tag/fenestration/

Chiari: 

http://www.conquerchiari.org
 http://www.chiariassociation.org
CaringBridge:
 http://www.caringbridge.org/visit/michelerobinson

Bob and I in London, March 2014

Katrina and I earlier week in Houston. We finally met face-to-face!

Rosalyn and I catching up in Louisiana earlier this week. We've been friends since high school