Peter/Olivia

What would life be like without your presence in the lives of others? The fourth season of FRINGE is centered around a world without Peter Bishop ~ I get it, this is part of the bigger story ~ but that doesn't mean I like it one little bit!

Actually, I've thought a lot about this theme ever since I was diagnosed with Chiari ~ what would life be like without me on this earth anymore? The concept is a hard one to embrace too closely without letting it consume me whole. I have a questions for other Chiarians and other assorted brain surgery survivors.

How did you cope with the overwhelming feeling that you just might not make it back from brain surgery?

 I used to think that I was really good at coping, pushing through very difficult times, but now I'm not so sure. The physical scars, although healed up nicely, will always remain on my skin as constant reminders of the battles I have survived. Now, almost three years post brain surgery, the emotional scars are bubbling up to the surface. Sure, I survived, I'm living, breathing, carrying on at the thing we called life...but at what cost?

I'm not the same person today that I was prior to my Chiari diagnosis. On that profound day,
September 26, 2006, I think I built an instant fortress around myself ~ guarding my emotions, protecting my heart.  I think a big part of me wants to walk away from everything prior to surgery and start a new.

The surgeons prepared me for the physical pain I would endure, the long recovery road, but they didn't prepare me for a total fall out of who I am and who I am becoming. This is probably totally gibberish to most readers out there, but I have a feeling a bunch of you know exactly what I am talking about.

Steep Climb Up Ahead

I am all for mental preparation ~ If there's something I have committed to I want to know what to expect. My experiences in the past have gone well when I have faced a dark situation with this attitude,
Hope for the best, but expect the worse.
I know, it sounds a little pessimistic, even for me, but it's the truth. With that said, my sister gave me a book (Learning to Breathe, by Alison Wright) for my birthday that has been a great inspiration to me and I am only half way through the book. It's a story about a photojournalist who found herself in a almost fatal bus accident in a foreign country. I won't give away the whole plot, but she was a breath away from death and chose to live and fight through her injuries to live.

Last night I read a sentence that really resonated with me ~

"Even in the darkness all we can do is keep moving forward."

This reminds me that all I have to do is just keep putting one foot in front of the other and eventually I will find myself no longer in the inky darkness of pain. How's this for perfect imagery, yesterday was cold, windy, rainy, overcast, the sun never came out all day. A super dreary New England day. This morning I awoke to a brilliantly shining sun, crisp, cool air. Even after the darkest night the sun will rise in the East.

So, I am off to church this morning, then Skyler's b-day party followed by the Giant game ~ Hey, anyone out there following college football? How about my Texas Tech Red Raiders!!!

Say

I recently saw the movie ~ The Bucket List. John Mayer wrote a song for the movie, SAY. The song is catchy, but the lyrics have stuck with me ~ playing over and over in my mind. With the arrival of summertime and the unstable weather that has descended upon NY, the return of my headaches is a constant reminder that life is short and not a minute should be wasted.

I often find my mind wandering back in time ~ thinking about roads I wish I would have gone down ~ made different choices ~ wish I had taken more chances and said what was on my heart. I know that there are books ~ volumes of books stored up in my mind of things I wish I had said and didn't. But now ~ since the birth of this blog and the connections with people I have made through my ramblings here ~ I find myself sharing more and more of myself ~ speaking from my heart. I can't help it ~ life is too short not to connect on a heart level.

So, with that said, I encourage you to say what you need to say ~ heal broken relationships ~ muster up the courage and let your heart speak for you.

SAY ~ John Mayer

Take out of your wasted honor

Every little past frustration

Take all of your so called problems

Better put them in quotations

Say what you need to say (8x)

Walking like a one man army

Fighting with the shadows in your head

Living out the same old moment

Knowing you'd be better off instead

If you could only Say what you need to say (8x)

Have no fear for giving in

Have no fear for giving over

You better know that in the end its better to say too much

Than to never to say what you need to say again

Even if your hands are shaking

And your faith is broken

Even as the eyes are closing

Do it with a heart wide open Why?

Say what you need to say (25x)

Illumination

The other day I was organizing some books in my bedroom and I re-discovered a journal entry that I had made after a breath work back in August of 2006. You can read more about what a breathwork is about in by clicking the underlined linked text ~ but basically it is a way of meditating deeply by taking in deep breaths which creates a dreamlike altered state. I have done several breathworks and each time I have breathed it has brought clarity and healing into my life. The last breathwork experience I had was full of profound messages that I stored away for another time. At the time I didn't know what the messages meant, but now, the messages bring illumination.

I won't go in great detail on my experience, but will share with you some of the profound messages I received. I am going to set up the scene ~ keep in mind that the breathwork is very dreamlike. My journey started out with me running across a desert somewhere in Africa. I was methodically running for a long time, across great distances all by myself. No fear ~ no pain ~ just a growing anticipation of where my journey would lead me.

Finally, I came to a circle of people holding hands ~ the circle opened and they let me inside. A pastor that I know who lives in Africa was there and he had a message for me. Words of wisdom followed ~ I was overwhelmed with tears as the words came to my ears ~

HEAL THE BROKEN HEARTED
LOVE WITHOUT CEASING
FOLLOW YOUR VISIONS
GIVE HOPE TO THE HOPELESS
GIVE FAITH TO THE FAITHLESS

The messages went on and on. I cried out,
"I am so small and only one person! How can I possibly help all of these souls?"
The answer was clear,
"You are strong, help one person at a time and don't ever give up!"
Such a daunting task, but I was fully aware that, yes, this was my calling.

These messages came to me probably in the first 15 minutes of my breathwork and 2 hours later I remembered everything I had heard word for word. Keep in mind that about a month later I found out about my Chiari Malformation. I was on the edge of a journey that would radically change the course of my life journey ~ what a journey it has been and it's far from over.

I have been incredibly illuminated by the messages I received two years ago ~ new life has been breathed into me and once again my mission is clear. I feel a profound calling to help those in need ~ to shed light into the dark corners in this big, bad Chiari journey. Clearly I am just one person in a sea of millions, but I want to help make the road a little less daunting for others that will find themselves on this journey. Thanks so much to you blog lurkers who have commented and sent me e-mails ~ you have given me validation that what I write is encouraging and helpful. Those of you who lurk and haven't reached out to me, know that I am just an e-mail away.

Survivor

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.

Time That Is Given To You

Frodo: "I wish the ring had never come to me. I wish none of this had happened."
Gandalf: "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo, besides the will of evil. Bilbo was meant to find the Ring. In which case, you were also meant to have it. And that is an encouraging thought." ~ LOTR

"The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air." Galadriel ~ LOTR

Take out the word 'ring' and replace it with 'brain tail' ~ I wish I malformation was ~ I wish I wasn't burdened with filling out wills and signing health care didn't even know what a chiari malformation was! Wish I wasn't dealing with filling out my will and health proxy's ~ but it's my life ~ like it or not. Somehow ~ the quote above is encouraging ~ I was meant to have it ~ I have enough strength to bear the load ~ to be able to stand up underneath the weight of the burden.


In the same breath ~ I know in my heart that a time of healing is just on the horizon.

I Lift My Eyes Unto The Hills

A wise friend of mine, having already survived brain surgery, recently gave me some sage advice. She told me to plan a trip to help me get through this rough time and give me something to focus on when I am consumed by the enormity of brain surgeries!

Scotland has always been calling out to me ~ more recently, the Isle of Skye. I have no idea how I am going to make a trip like this happen, but I have faith that everything will come together.

Miracle Of The Moment

You've heard me say it a thousand times ~ but I'm going to say it again ~ MUSIC INSPIRES ME ~ I heard a new song this morning that really spoke to my heart ~ I wanted to share it with you. Click here (Play SCC's New Song) to hear the song. Just when I thought that there couldn't possibly be a new song out there that would resonate with me ~ a breath of fresh air appears and breathes hope into my life, again.

Miracle Of The Moment - Steven Curtis Chapman

It's time for letting go
All of our "if onlies"
For we don't have a time machine

And even if we did
Would we really want to use it
Would we really want to go change everything

Cause we are who and where and what we are for now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

There's only One who knows
What's really out there waiting
And all the moments yet to be
And all we need to know
Is He's out there waiting
To Him the future's history

And He has given us a treasure come right now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

And if it brings you tears
Then taste them as they fall
Let them soften your heart

And if it brings you laughter
Then throw your head back
And let it go
Let it go, yeah
You gotta let it go

And listen to your heartbeat

And breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

And breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now (here and now)
It's right there in front of you
And I don't want you to miss the miracle
Of the moment

On Holiday

The roads were shrouded in fog this morning on my commute into work. Thunderstorms are imminent ~ the brain tail beats up on me when the barometric pressure is low. It's hard for this Texas transplant to believe that it's really July, because the temperature this morning was 64 degrees. In my mind, summertime = 100+ degrees ~ some things are hard to unlearn.

I can press on ~ I have lots of packing to do ~ we are headed out on our annual family pilgrimage to the seashore. There is something about the endless thundering motion of the surf that balances me out. Maybe it's the cycle of the low and high tides or the powerful crashing of the waves onto the shore that reminds me how small I really am ~ just a speck of sand on this home we call Earth.

The Truth Is Out There!

Today was not the greatest day ~ everything was blurry, I hit another obstacle with the insurance beast and I had a fierce headache all day long. I was reading up on the daily news on line and a headline caught my eye.

"NEW X-FILES MOVIE COMING SOON"

I couldn't believe my blurry eyes ~ so I searched for more news articles with the same announcement ~

The "X-Files" movie is finally out there

The truth is out there! I had almost given up hope that Mulder and Scully might be reunited again. They are supposed to start filming as early as November 2007 with a movie release date of Summer 2008.

Just this morning, I was reading E's blog and she had an X-Files link to illustrate the song "Joy To The World" ~ funny compilation of Mulder and Scully. Syncronistic? You bet ~ E and I are both X-Files nuts! When I got hooked on the X-Files the show had been running for 3 seasons already. I was a little skeptical with themes thick with little green men, government conspiracies and of course a healthy dose of really bizzare plot lines. What drew me in was the univesal theme that there is something bigger than ourselves out there.

I loved the banter between Mulder and Scully ~ the dreamer and the scientist ~ hunches and facts. The connection between the two is electric and most of all ~ they make me laugh! I haven't been this excited about a movie since Return of the King!

Maybe there is hope...

I WANT TO BELIEVE!

Quiet Reflections

A couple of days have gone by ~ I have had time to digest "Give me the clay!" The world around me is always spinning so fast (literally) and the noise level is indescribable ~ a not so pleasant side effect from my rouge brain tail. I shouldn't complain, most people with Chiari report hearing loss ~ but then again, have I EVER done anything normally?

My point I am trying to make ~ I find myself bombarded by loud noises and can't seem to find the volume knob to tune it down a little bit. It's hard to even hear the thoughts inside my head. So, yesterday, I slipped away and went for a long walk along the river. My iPod was set to play my inspirational mix ~ I was starting to digest the meaning of the message I had gotten this week.

Something I have learned is that the messages don't come without a sense of urgency. There is a message I need to be receiving, NOW. They come with hidden and obvious meanings. This time ~ I didn't have any clay in my hands at the time of the message and I don't even own any clay ~ so I am leaning heavily on the hidden message within.

The most obvious place to start when I get a message from God is his book, The Bible. When I got home I looked up some verses about clay ~ these are some of the verses that resonated:

2 Corinthians 4:7 We now have this light shining in our hearts, but we ourselves are like fragile clay jars containing this great treasure. [ Greek We now have this treasure in clay jars.] This makes it clear that our great power is from God, not from ourselves.

Isaiah 64:8 And yet, O Lord, you are our Father. We are the clay, and you are the potter. We all are formed by your hand.

Translation ~ relevant to my life ~ I have been formed just the way God intended to ~ rogue brain tails, over abundant collagen gene mutations, connective tissue disorders, cranial settling, tight filum terminale ~ to name a few. Light shining in my heart ~ I could use more of that ~ bring it on. These passages give me a moment of peace, knowing that I am right where I should be ~ nothing more or less ~ just please don't ask me to make a clay pot for you ~ how about a lump of clay?

He Aint Heavy, He's My Brother

I was a little sister, an only child and a big sister within the span of my first four years. How can this be, you ask? Well, my big brother, Trey, affectionately known by me as "Bubba", received a fatal kick in the head by a horse out in a Texas pasture on March 4th in 1973. I was only two and a half at the time, but I was there on that field that day, I saw everything happening in slow motion before my eyes. My photographic memory captured that moment and I can still see the scene unfolding before me like it happened today.

A part of me also died on the field that day, but his spririt lives on in me. My life has been profoundly shaped by losing my brother at such a tender age. I always wonder how life would have been different if Trey hadn't died so long ago. Would I have chosen different paths in life? It has taken me several decades to make my peace with God for taking my brother from me. I know that it was part of the bigger plan ~ my faith is strong, because it is the only thing that helped me to survive the earth shattering grief!

This year, on July 9th, Trey would have been celebrating his 40th birthday. Thirty four years have passed since he left this earth and yet I still celebrate Trey's life every year. Recently, I have felt his presence nearby when I have been downtrodden and discouraged. I can almost see his face break into a boyish grin, I can hear his belly laugh ~ his faith in me is strong! He encourages me to run a good race in this life. He knows how tough the road ahead of me is ~ but he breaks into a smile and tells me that brain surgery ~ spinal surgery ~ compared to everything I have endured already ~ no sweat ~ I can handle it and it will me make me stronger for being a survivor.

Knowing that Trey is up in heaven, waiting for me to join him one day, makes the burdens here on earth not so heavy. This song is bittersweet for me ~ everytime I hear it, I think of my brother.

"He Ain't Heavy, He's My Brother"

The road is long, with many a winding turn

That leads us to who knows where, who knows where

But I'm strong, strong enough to carry him

He ain't heavy - he's my brother

So on we go, his welfare is my concern

No burden is he to bare, we'll get there

For I know he would not encumber me

He ain't heavy - he's my brother

If I'm laden at all, I'm laden with sadness

That everyone's heart isn't filled with gladness of love for one another

It's a long long road from which there is no return

While we're on our way to there, why not share

And the load, it doesn't weigh me down at all

He ain't heavy - he's my brother

He ain't heavy - he's my brother,

he's my brother, he's my brother

Days Like This Feel Like An Uphill Climb

My Brain Tail has been effecting my eye sight ~ most days, my vision is blurry and sometimes I see double. I just saw the eye doc last week and got a brand new prescription for my glasses. I have worn them now for two days ~ I am not convinced that they are better than the last pair. On the other hand, I can't blame everything on the new prescription, because I have had a bad case of vertigo for at least five days now.

Seriously, I can't stand still without falling over, forget walking in a straight line. I walk around like I am on a Spring Break drinking binge! My co-workers have even asked me if I am drunk, my response, "I'm just buzzed, my brain tail gets blamed for everything!" So ~ I guess I should give my new glasses the benefit of the doubt, maybe when the ground stops moving I'll give them my stamp of approval.

As I wait with great expectation for my appointment with the spinal surgeon on the 11th, I feel like my journey has been a slow, uphill battle. A blog friend of mine just got her decompression surgery scheduled for July13th! She shares similar struggles with the headaches and dizziness. but things have come together quickly for her. I have to remind myself that life is all about timing, God's, not mine.

Handprints ~ Signs of Life

I have been in the middle of a huge emotional avalanche lately ~ I hear a song on the radio and waves of emotion swell in my heart. I have said it time and time again, music reaches me on a deep and profound level.

There is this song by Mark Harris that provokes tears every time I hear it. So you ask, why don't you change the station when it comes on the radio? The truth is, I can't, I love the message he sends. It puts my focus outward on my children and my nephew. It reminds me to teach children that no matter what, God give us faith and courage to face anything in the world.

Find Your Wings ~
Pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings

May passion be the wind
That leads you through your days
And may conviction keep you strong
Guide you on your way
May there be many moments
That make your life so sweet
Oh, but more than memories

The hand print is from my youngest daughter ~ it's part of a Father's day gift. She gave it to me to hold on to for safe keeping until Father's Day. When I read the poem on the back ~ tears started streaming down my face. Life seems so fragile to me right now ~ with brain surgery on the horizon, all that I know could be gone in an instant ~ The thought of not being here to see my children grow up would be unbearable. So ~ as always ~ my children are teaching me to slow down a bit and see fingerprints on the windows as signs of life!

Under African Skies

"This is the story of how we begin to remember. This is the powerful pulsing of love in the vein. After the dream of falling and calling your name out. These are the roots of rhythm and the roots of rhythm remain." ~ Paul Simon

I get wallpapers weekly from Away.com.
This picture of Kenya struck a chord somewhere at the cellular level in my veins. How could I possibly remember what a sunset looks like in Africa when I don't even have a passport!?! Can't explain it ~ I just have a feeling in my bones that someday I will make my way back there.

Hawk In A Parking Garage!

I had just gotten into my car that was parked on the third floor of the parking garage across from my office. The sky had turned to grey and I could hear thunder rumbling in the distance. The air felt heavy and there was a feeling of electricity in the air.

My hover craft was making it's way down the garage to the exit when I saw something very large in front of me. As I looked in amazement, there was a very large red tailed hawk standing it's ground with it newly killed supper gripped tightly in it's talons. We exchanged glances at one another. He was hell bent on getting out of that garage with it's supper in tow ~ he was facing his giant. He tried to take flight as I slowed down and drove slowly around him, but his kill kept coming out of his claws. I fought the urge to pull my car over and get out. I wanted to make sure that he got out of the garage without getting run over. I felt instantly protective of brother hawk.

I would like to think that we both learned something from one another today. I learned to expect the unexpected and I hope that he learned that he can stare down a car and have his dinner, too.

Sunshine On My Shoulders Makes Me Happy

There is something amazing about the healing powers of the sun. This weekend, I stole a couple of hours from the day and planted myself in the backyard by the pool ~ book in hand ~ cool drink nearby ~ I couldn't want for anything else in the world at that moment in time.

Summertime always summons a huge vortex of nostalgia for me. The memories come swirling in so fast and furious that they almost take my breath away. Spending my childhood in Texas, summer was all about the sun and water ~ any form of water ~ whatever it was, you must get in it or fry your body to a crisp! I still am torn between my two favorite bodies of water: oceans and rivers.

Every summer we used to rent a beach house right at the water's edge on Bolivar Island. Wild horses couldn't drag me away from the thundering motion of the waves. We would also spend many hours floating down the refreshing Guadalupe River on big inner tubes. To this day, every time I catch a whiff of cypress trees, images of the river come with it.

So ~ despite how bleak things may seem for me sometimes, I am finding slices of life that transport me above all of the muck ~ giving me a moment of pure joy.

Survived the Move!

We all survived the big move over the weekend. Everything went as smooth as possible. Most boxes are already unpacked and things have been put away ~ maybe not in their permanent place ~ but out of site. I have no idea where I got all of the energy I needed to get things done ~ I figure I will probably crash some time soon.

The house feels like a good fit ~ it almost feels like we are staying at a vacation house. I have always wanted a house that was big enough so that we could have lots of friends and family over ~ I want the kids to feel comfortable having their friends over to hang out ~ sleepovers ~ blizzard parties ~ pool parties ~ I think we have finally found the right place for all of these things to happen.

No new updates from the land of insurance. They are reviewing my request to have the tethered cord surgery locally ~ hey ~ is it just me or is this really silly ~ they are the ones who denied my request to have the surgery done at TCI ~ They suggested that I see a local neurosurgeon and have the procedure done here ~ and now they have to approve their own suggestion?!? Also ~ I haven't even seen a spinal surgeon yet ~ LOL!

The Big MOOOOOVE

Tomorrow is the big mooooving day ~ I'll be off the screen for a couple of days as I wade through boxes! Still waiting on approval from the insurance company to officially authorize an appointment to my newest neurosurgeon. E. is keeping her fingers crossed that my doc will look like McDreamy! Have a great weekend ~

Bring on the Rain

"How can I praise you with all that I have been through? How could circumstances possibly change who I forever am in you!

You are much greater than the pain ~ bring my anything that brings you glory ~ this life will bring me pain ~ but if that what it takes to praise you ~ Jesus bring the rain."

Brilliant lyrics ~ like they were written for me in this time, this moment ~ solid words of encouragement. I am finishing up packing up the house for the move this week ~ all of our possessions reduced to piles of cardboard boxes. The walls are empty, plain ~ I go to get something and realize that it has already been neatly packed up. I am almost feeling prepared for the move ~ the calm before the storm ~ it's going to be a good move ~ but I am a little stressed out about the giant task before me. My brain tail does not take kindly to stress ~ it throws me into a sea of confusion and panic ~ I am learning how to quiet the chaos in my head ~ telling myself that it's all made up ~ I can do this ~ I am good at handling stress ~ everything will turn out OK.

I continue to have moments when I feel all hope is lost ~ how could my body be failing me more and more? I can hardly remember what it felt like to be strong and healthy. I attempted to go on a slow jog on Friday ~ my legs just wouldn't move at more than a turtles pace ~ I fear that the tethered cord is pulling me down, literally! Again, how can I hate something that is a part of me. If something is broke, fix it now, not in a month or two ~ not wait until the insurance company decides if it's ok or not to have the surgery done ~ NOW!

So ~ I press on ~ using the move as a huge distraction ~ bring on the rain ~