Do You Hear What I Hear?

MRI's take fascinating pictures of the body. When perusing the my latest set of MRI's photos, this one made the most profound effect on me ~ I'm still trying to figure out why.

So, let's talk about ears....Genetics are definitely present in the shape of ears. I can see Morrison genes for many generations in the shape of my ears. For as long as I can remember, I've had freakishly acute hearing. I've made claims of hearing earthworms moving underground! Well, that might be bit of a stretch, but I've been known to be awakened from a sound sleep by a tiny noise coming from the basement of the house. Maybe this is why I'm not getting much sleep ~ EVER! I distinctly remember waking up when I was a little girl by the sound of my long haired dachshund lapping up water from his bowl. I would crawl out of my bed and sit beside him and watch him drink until he finished the last drop.

There are certain sounds that resonate louder than others ~ the crashing of ocean waves, new born puppies yipping, tires driving on a country dirt road, a bubbling creek on a hot summer day....And then there are other sounds that send me over the edge ~ the sound of motor cycles comes to mind first. I have a pretty good idea why, the sound of a moped revving preceded my brothers death ~ You can't "un-hear" something. Sounds make lasting impressions in our minds that are tattooed there forever.

Since Chiari has railroaded my life, I've notices sounds more and more. Many chiarians lose their hearing ~ but me ~ I'm a bit of a hybrid and my hearing has gotten off the charts acute. I was hoping after brain surgery that my hearing would tune down a notch or two but it hasn't. So the real questions is ~ what am I supposed to hear and why?

Completely UnRemarkable

Current Scan 2012

vs
Original scan 9/26/2006

According to the Dictionary, here's the definition for UnRemarkable: not worthy of note or attention;

Lacking distinction; ordinary. 

I was hopeful, hoping the MRI would reveal something ~ anything ~ a new revelation that would explain away the pain in my head. Most people would pray for a clean bill of health with nothing to write home about. But I'm not a part of that 'most people' crowd anymore. Brain surgery kinda stole that from me.

I was driving to my neuro surgeon this morning, looking forward to seeing the very first surgeon I met after been diagnosed with Chiari in 2006. A book on tape was playing in the car and I was thinking about my answer to a question asked: 

"When everything is stripped away from you, what gives you the strength to keep on going?"

 If you had asked me this question 6 years ago I wouldn't have hesitated before answering, my faith in God, of course. He loves us, cares for us.... but today, I'm not so sure.  One thing did come come to mind though ~ I can't just submit to the pain in my body ~ I've got Chiari friends both far and near who need me, who depend on me for friendship and guidance. As if an unspoken prayer for validation was asked, as soon as I checked in at the doctors office, I sat down and logged onto my email to pass the time as I waited for them to call my name. There at the top of the new emails in my inbox was an email from a very dear Chiari friend. We had exchanged a couple of heart to heart emails over the past week and she was concerned about me. Lil ole me ~ out of all the others out there who clamor for her attention. I immediately burst into tears. She gets me ~ we are in the same medical predicament ~ surgical candidates and yet not wanting to go back to surgery just yet.

What was I doing? Yes, I was following doctors orders by getting another baseline MRI, but who was I kidding? I'm a TCI patient ~ they are without a doubt the best of the best in the world and are celebrated Chiari gurus. How could I possibly expect anyone else to understand my complicated condition? So long story longer, I was greeted by the PA of the office and not the surgeon I was looking forward to seeing again. Nothing was found on my MRI that signaled a need for surgery. He recommended I see a pain management doc and a neurologist to help me figure out what steps to take to get an handle on my pain.

I feel like a college grad who was sent back to Kindergarten again ~

Brain‍ MRI

Tomorrow I'm spending my morning lying very still in a MRI machine for two hours. I have made my peace with the noisy, magnetic machine ~ but I don't like them poking around in my head and spine, looking for something out of the the ordinary. Since Chiari is usually an "invisible disease" ~ a closer look is needed to find out the source of my pain. I have scheduled an appointment with a neurosurgeon the following week to go over the results of the MRI.

Approaching Storm

Elfin language:

Pres'tinin-The world is changing.

Hauranen bithnin-I feel it in the water.

Hunuthra meyahi-I feel it in the earth.

Ahustinin benilingi-I smell it in the air.

Storms in life seem to roll in and out like the tide. There's no stopping the endless thundering motion. Friday,
I found myself in a haze of deja vu as I sat patiently, waiting to hear my name called by a neuro-surgeon.

I've been putting off making an appointment ~ for about a year now ~ until my intrepid endocrinologist made an appointment for me.  I'm not a whiner or complainer, it's my first nature to grin and bear it ~ so that's what I've been doing for a while now. My doctor thought it would be a good idea for a local surgeon to get a baseline on me and keep an eye on me and my symptoms. Fair enough ~ but I wasn't really wanting to open Pandora's box, again.  

When the nurse walked in to gather my medical history I braced myself for a barrage of questions. I had to be thorough and brief at the same time or the appointment would have lasted several hours. I've got medical history and lots of it.! When she started questioning me about my surgery for Chiari I almost laughed at her when she innocently said, "your Chiari Malformation was removed during your surgery?" Seriously? It's not a tumor you can simply remove and go on with your life. I really wish the staff at neurosurgery offices would be a bit more educated on the afflictions of the patients.

I digress ~ after a battery of basic neuro tests, it was deemed that there wasn't anything noticeable wrong with me. Duh ~ a two hour MRI with and without contrast has been scheduled for a few weeks down the road. It will be good to check in and see what my Braintail has been up to. I'm not sure what to hope for. A part of me wants them to find a tumor that's been responsible for turning my life upside down. Another part of me wants them to find evidence of syringomyelia. My biggest fear is that the MRI will reveal nothing out of the ordinary. At this point I am needing something concrete ~ something to focus my anger on for causing pain again and again.

The irony of my invisible disease ~

Stand in the Rain

This song speaks to me on so many levels ~ and I identify with Olivia from FRINGE on so many levels, too. How perfect that someone put these two together. Why is it that I keep finding myself standing in the pouring rain ~ figuratively of course ~ I can't seem to get to my happy place. Toss and turn ~ kick and scream  ~ wrestling within. Is there inner peace anywhere in my near future?

What's lost will be found...I'm placing a lot of hope on this...

"Stand In The Rain" ~ Super Chic(k)

She never slows down.
She doesn't know why but she knows that when she's all alone, feels like its all coming down
She won't turn around
The shadows are long and she fears if she cries that first tear, the tears will not stop raining down

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

She won't make a sound
Alone in this fight with herself and the fears whispering if she stands she'll fall down
She wants to be found
The only way out is through everything she's running from wants to give up and lie down.

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

So stand in the rain
Stand your ground
Stand up when it's all crashing down
Stand through the pain
You won't drown
And one day, whats lost can be found

[CHORUS]
So stand in the rain
Stand your ground
Stand up when it's all crashing down
You stand through the pain
You won't drown
And one day, whats lost can be found
You stand in the rain

If You Want Me To

What inspires you to write, to share life's struggles? For me it's pain ~ pain~pain~pain.  For reasons I can't explain, I keep coming back to the same crossroad. For two weeks now I've been plagued with crushing Chiari headaches. The yo-yoing barometric pressure is mostly to blame along with stress of life. 

But what's the solution?  Unfortunately, there is no grand cure-all solution for me as a Chiarian. I'm still not convinced that a fusion surgery is the way to go either. Entertaining the idea of going to see a local neuro-surgeon to discuss the options of shunt surgery to relieve CSF pressure in me head...if you want me to...

Keep Looking Up

If you've been following my blog over the past 4 years, you know that I am a firm believer in signs. They can lead me in an unexpected direction, present clarity, be uplifting or just make me laugh until I cry.  I've been confiding lately in a wise friend of mine who has given me great counsel. Most recently, at the end of an encouraging email, a very simple yet profound message was conveyed ~

KEEP LOOKING UP

This wasn't a suggestion, but more of a wake up call ~ I've been looking down way too much lately and really can't remember the last time I lifted my head to the heavens and looked up. As a Chiarian, looking up isn't something we do much, because it physically hurts to look up and can cause a wicked case of vertigo. But I digress ~ God commands us to put our trust in HIM, search for that guiding light that shows us the way to go when we have lost our way.

Three times in two days I lifted my head to the skies after a torrential downpour and saw double rainbows. I was even able to capture them on my iPhone. The photo above was taken last night at the football field before the game. The rainbow is a promise that God will never flood the earth again ~ and HE always keeps his promises. But seriously, three times in two days? How many double rainbows have you seen in your lifetime. I've seen a couple but never been able to capture them on film to share with others.

The rainbow sightings have been humbling ~ giving me new perspective and hope. May you been blessed with the sighting of a double rainbow, too.

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.

Letting Go and Taking the Leap

"We must be willing to get rid of the life we've planned so as to have the life that is waiting for us."

Joseph Campbell

I watched this trailer this week and it inspired me and gave me hope ~ I hope it does the same for you.

Finding Joe


Finding Joe - Trailer V.7 from pat solomon on Vimeo.

Meant to Be

I've strayed way of course lately ~ seemingly drowning in a vortex of the unknown ~ and then I heard the lyrics to this song ~ a quiet, strong reminder that I am meant to be here on this earth ~ sharing my gifts ~ I am part of  greater plan. I hope this song speaks to you, too.



Long Before You Drew Your First Breath 
A Dream Was Coming True 

God Wanted to Give A Gift To The World 
So He Wrapped It Up In You 

Every Step That You've Taken 
Every Move That You Make 
Is Part Of His Plan 

You Were Meant To Be Touching 
The Lives That You Touch 
And Meant To Be Here 
Making This World So Much More 
Than It Would Be Without You In It 

You Were Meant To Be Bringing 
The Gifts That You Bring 
And Singing The Songs 
You've Been Given To Sing 

You Are Perfectly, Wonderfully, 
Beautifully Meant To Be 
You Were Meant To Be 

Long Before You Took Your First Fall 
You stumbled to the ground 
God started telling the story of you to the angles around 
Every failure and victory 
Everything inbetween 
Its all in his hand 

You Were Meant To Be Touching 
The Lives That You Touch 
And Meant To Be Here 
Making This World So Much More 
Than It Would Be Without You In It 

You Were Meant To Be Bringing 
The Gifts That You Bring 
SOURCE: LYBIO.NET 
And Singing The Songs 
You've Been Given To Sing 

You Are Perfectly, Wonderfully, 
Beautifully Meant To Be 
You Were Meant To Be (yeah) 
Meant To Be 
You are 
You are 
You are meant to be 
You are 
You are 
You are meant to be 

For every breath that your taking 
And every move that you make 
It's a meaningful life you've been given 
Live it well 

You Were Meant To Be Touching 
The Lives That You Touch 
And Meant To Be Here 
Making This World So Much More 
Than It Would Be Without You In It 

You Were Meant To Be Bringing 
The Gifts That You Bring 
And Singing The Songs 
You've Been Given To Sing 

You Are Perfectly, Wonderfully, 
Beautifully Meant To Be (yeah) 
You Were Meant To Be (yeah) 
You Were Meant To Be (yeah) 
You Were Meant To Be 
To Be 
You Were Meant To Be