Always Looking Up

Last week I DVR'd an Oprah episode when Michael J Fox was the guest. Today I finally got around to watching it and wasn't prepared for the profound effect the show had on me. It's been a rough couple of days. The sky has been dense with grey clouds and the rain and some snow flakes have been falling. As a chiarian these weather conditions can cause those lovely barometric pressure headaches from hell, not to mention the feeling that an elephant has camped out on my chest making it difficult to breathe. On top of it all I have been hunkered down in my study bunker trying to cram for my SQL 2005 test that I took yesterday. I passed the multiple choice ~ 35 question section that I have been studying for, but I totally failed the application part of the test that I had no idea existed! Needless to say I was feeling defeated and disappointed yesterday. All that studying and I have to take the whole thing all over again ~ sigh
Anyway, while I was sulking around last night I was thinking about the aftermath of my brain surgery. I do survival mode really well ~ I know my path and I slog through it. But what now? After brain surgery there isn't anything anything harder in life ~ right? Wrong ~ I am learning that my perspective on things have totally changed post surgery. I can't even begin to explain it yet ~ maybe it's a feeling I have deep down in my heart ~ like I need to be doing something profound ~ making a difference. But honestly, I just don't have the energy yet ~ I am getting there, but slower than I would like. That brings me to the point I was trying to make all along.

I have always been a big Michael J Fox fan ~ ever since Family Ties. How could you not love the guy?! Remember Back to the Future (the flux capacitor is fluxxing) and Secret of My Success? Classic movies of the 80's. Fox was diagnosed with Parkinson's Disease about 18 years ago. I have kept up with his condition and I am amazed at how he has continued to live his life despite all of the odds stacked against him. Oprah's interview with Fox was inspiring to say the least.

When my Chiari symptoms were at their worst I thought I just couldn't continue to live with the constant tilt-a-whirl effect of vertigo and the crushing headaches. Then I hear Michael talk about feeling like he's got a four year old constantly tugging on him ~ pulling his body in every direction. I can't even to begin to imagine how difficult his struggle must be ~ but he does it and is making a difference in this world by raising awareness and helping to find a cure.

I saw a quick one minute promo for the special and was intrigued by the fact that Michael's symptoms were lessened when he was in the high altitude of the Himalayas. Sounds like my intuition about going to Everest just might be more than a passionate desire! Again, I am inspired by Fox's great positive attitude, proof that even when you can't change your circumstance, you can choose to be positive. Adventures of an Incurable Optimist is on May 7th, 10pm on ABC. ~ put it on your calendar and watch with hopes that you just might find a glimmer of hope and renewed faith. too. Thanks to Michael for awakening my blogging muse who has been slumbering for way too long!

Finding Clarity Through the Fog

I was driving into work this morning at 6am. It was still a little dark outside and the river road I drive on was shrouded in fog. What images/thoughts come to mind when you think of fog? Does it bring up feelings of fear or dread? For me, I feel energized and inspired by fog ~ I don’t know where the feelings come from ~ but hear me out.

As I was driving along, the imagery of a foggy road actually shed some light on a dark place in my heart. I think of life lessons in parables ~ when you can’t see the way, slow down, be on alert, follow the lines, and use your low beams. Even though putting on your high beams might seem like a good idea ~ yeah ~ more light means I can see better ~ wrong ~ the high beams make the light reflect right back in your eyes and then you can’t see at all.

*Sigh* ~ message heard loud and clear. I’m not going to know what’s just around the next corner and that’s just as it should be. Follow the lines on the road (the truth in scriptures) and enjoy the experience of traveling through a cloud! Just ignore the fact that the brain fog has totally taken over...

Everest

I admit it ~ I am an addict ~ I am addicted to all books regarding MOUNT EVEREST. I had just started reading a book my sister had lent to me ~ Three Cups of Tea ~ when the call came in from the library. My library let's you select a book on line and then when it comes in they call you to let you know that they have reserved the book just for you. Novel idea ~ I love it. Sometimes I will request a book and have to wait several months to receive it. So when I got the call that a long awaited book had arrived, I jumped in the car and sped over to the library to pick it up.

Seriously ~ who speeds over to the library ~ 'Sorry officer ~ I was on my way to the library and just ignored the speed limit signs. You see ~ I am jonesing for an Everest book ~ gotta read it right now!' ~ luckily I picked up the book and drove home without any embarrassing incidents. Mountain Madness: Scott Fischer, Mount Everest and a Life Lived on High, by Robert Birkby is a wonderfully entertaining book detailing Scott Fisher's life. He was such a breath of fresh air ~ so passionate about the outdoors and climbing and he always was eager to teach anyone who would listen. He wanted to share his love of the mountains with as many people as possible. Just from reading countless other Everest themed books I feel like I already know Scott ~ everyone who ever met him loved him and his zeal for life! Even though he died in one of Everest's greatest tragedies, reading about his life journey has brought him back to life.

Again ~ I try to figure out why I am I so addicted to reading personal accounts of Everest climbers? There's no one in my family that I know of who has even attempted to climb the tallest mountain in the world. Somehow, living vicariously through all of their adventures, I get a sense of peace from the climbers when they stand on top of the world. Some day ~

The Call

Ever since I saw Prince Caspian this song ~ The Call ~ has been playing in my mind ~ so wistful ~ hopeful ~

The Call ~ by Regina Spektor

It started out as a feeling

Which then grew into a hope

Which then turned into a quiet thought

Which then turned into a quiet word

And then that word grew louder and louder

Til it was a battle cry

I'll come back

When you call me

No need to say goodbye

Just because everything's changing

Doesn't mean it's never been this way before

All you can do is try to know who your friends are

As you head off to the war

Pick a star on the dark horizon

And follow the light

You'll come back when it's over

No need to say goodbye

You'll come back when it's over

No need to say goodbye

Now we're back to the beginning

It's just a feeling and no one knows yet

But just because they can't feel it too

t mean that you have to forget

Let your memories grow stronger and stronger

'Til they're before your eyes

You'll come back

When they call you

No need to say goodbye

You'll come back

When they call you

No need to say goodbye

I'm Giving In To Something Heavenly

The lyrics to this song seem to sum up everything I am going through right now ~ giving in to something heavenly ~ something bigger than myself ~ something bigger than me.

Sanctus Real - Whatever You’re Doing

It’s time for healing, time to move on,

it’s time to fix what’s been broken too long

Time to make right what has been wrong;

it’s time to find my way to where I belong

Chorus:

There’s a wave that’s crashing over me, and all I can do is surrender

Whatever You’re doing inside of me

It feels like chaos, but somehow there’s peace

And it’s hard to surrender to what I can’t see,

but I’m giving in to something heavenly

Time for a milestone, time to begin again, re-evaluate who I really am

Am I doing everything to follow Your will or just climbing aimlessly over these hills?

So show me what it is You want from me I give everything – I surrender

Chorus:

Time to face up, clean this old house

Time to breathe in and let everything out that I’ve wanted to say for so many years

Time to release all my held back tears

Whatever You’re doing inside of me

It feels like chaos, but I believe …

You’re up to something bigger than me

Larger than life, something heavenly

Whatever You’re doing inside of me

It feels like chaos, but now I can see

This is something bigger than me

Larger than life Something heavenly, something heavenly

Time to face up, clean this old house

Time to breathe in and let everything out

Half Empty

Driving into work this morning I glanced down at my gas gauge and made a mental note to put gas in the car later today ~ I am past the half full mark. Gas prices in NY have risen to $3.73 per gallon and that's for unleaded. Seriously, I shouldn't complain, my Prius has been getting about 48 miles to the gallon lately ~ true story!

Further on down the road the song, Empty Me, by American Idol alum Chris Sligh came on the radio. Hmmm ~ seems like the word 'empty' is the word of the day! Ordinarily I would view that word as negative, but after listening to the lyrics of Chris' song I have a change of heart. Maybe I have had it wrong all this time. I think of myself as a 'half full' kind of girl ~ but maybe 'half empty' is better? Read some of the lyrics I posted below ~ listen to his song ~ and let me know what do you think.

I know how I can stray and how fast my heart can change. Empty me of this selfishness inside and every vain ambition and the poison of my pride ~ Lord empty me ~ so I can be filled with you ~ every thing is a lesser thing compared to you ~ so I surrender all.

Extreme Makeover ~ The Carter Family

Mark your calendars ~ Extreme Makeover Home Edition is re-airing the episode about the Carter Family on April 6th. The day before my tethered cord surgery I met Julie Carter at the Variety House ~ she is an amazing woman! Her passion for helping people with Chiari is incredible. If you didn't catch this episode when it aired in October be sure to watch it on April 6th.

"Carter Family" -- The Carters of Billings, MT were surprised to receive the news that Ty and the gang will transform their current home of a chicken coop into the home of their dreams in just seven days on "Extreme Makeover: Home Edition," SUNDAY, APRIL 6 (8:00-9:00 p.m., ET) on ABC. (Rebroadcast. OAD 10/21/07)

Julie Carter suffers from a genetic disorder known as Chiari Malformation, as does her 21-year-old daughter, Jade. She fears her other two daughters may have it as well. Julie and Jade have had several brain surgeries costing over $500,000. This condition has over 85 symptoms -- which makes it very easy to misdiagnose -- and causes depression and chronic fatigue. Julie has made it her passion to spread awareness of the rare disorder and has become a hero to thousands. She writes a monthly newsletter to Chiari patients, providing them support, compassion and valuable information, which she assembles and distributes with her own money. She also started Chiari People of Montana, a support group. With her success, she was recently asked to run the first Chiari Malformation chapter in Billings. This is a bittersweet honor, since her makeshift office is hardly suitable for getting out her newsletters.

Julie is so consumed with helping others that she rarely thinks of her own living situation -- which is a refurbished chicken coup -- but the astronomical medical bills are a regular reminder that there's little chance their house will ever be fixed. From the outside their home looks like a long warehouse; the exterior walls are buckling and some of the windows are cracked, which makes it tough in the brutal Montana winter. They've made the best of the interior, but the cracks in the floor and the unusable space makes heating the place expensive. It's now up to the design team to get this family out of the chicken coop and into a healthy house, and to reward this selfless mother with a state of the art facility where she can run the Billings chapter of Chiari. While Ty and the designers, local builder Jeff Junkert Construction, Inc. and hundreds of volunteers and workers are rebuilding their home, the Carter family will go on vacation at the Hilton Times Square in New York City.

Source: ABC

The Dash

A friend of mine sent me this poem/movie yesterday and I just had to share and pass it along! The Dash expresses the simple truths of our purpose here on earth.

"What matters is how we live and love."

Enjoy the vid and if it's too small ~ here's the link where it will show full screen. I hope this brings you a renewed perspective on your life! http://www.thedashpoemmovie.com/

"Year's Best" Meteor Shower to Peak December 13-14

I have always been fascinated with what's going on in outer space ~ maybe it was the Star Wars movies that set me on that path ~ maybe the hours I spent on the air strip at camp, straining my eyes to see shooting stars. I can't remember the last time I actually saw a meteor shower, so that means it's time to bundle up and look up into the heavens!

The Geminid meteor shower—considered by many to be the most active annual sky show—is going to be especially spectacular this year, astronomers predict.

Who can resist "especially spectacular"! Since this is the Christmas season, a most famous star comes to mind ~ the star that shone over Bethlehem the day Jesus was born. Imagine what was going on in the minds of the star gazers of the time.

They studied the heavens ~ they knew the stars ~ and all of the sudden there is this brilliant star shining in the heavens. I'll bet they were so curious that they couldn't help themselves ,but to drop all of their plans and journey to where the star shone. What an aw some sight that must have been!

Bears ~ Growing Up Grizzly

Last night I was flipping through the channels and found a kid friendly show on Animal Planet to distract my youngest one from crying ~ she had slipped and fallen on the ice on our driveway. I had seen the original Growing Up Grizzly show a while back that focused on Bart the Bear I. Bart was a very famous movie star. He acted in movies such as: Legends of the Fall, White Fang, The Bear, The Edge ~ an amazing animal!

The show that was on last night was Growing Up Grizzly 2 which focused on the three year old bears ~Little Bump and Bart II~raised by the same trainers ~ Doug and Lynne Seus. Watching the bears interact with the trainers like they are family members was amazing. I think that we have a lot to learn from bears ~ they are intelligent creatures who have a message to share with us. There was a particular moving part in the show when the trainers took the bears to an exclusive wild area and let the bears roam free while the trainers had a picnic nearby. Words just can't do the show justice ~ you just gotta watch it for yourself. I have posted some videos below that give you a taste of the magnificence of the bears.

Miracle of the Moment

I woke up this morning to the all familiar stupor of greeting a new day after a night filled with restless sleep. As soon as I rolled out of bed and my feet hit the floor I could tell that my legs were betraying me already. The floor felt like it was moving beneath me and I struggled with my legs as my brain was commanding them to walk. Despite these symptoms, I was in a fairly good mood and was looking forward to my appointment with the genealogist this afternoon.

At about 8:30 this morning I got a call at work from a representative in the appeals department at the insurance company. She was speaking in hushed tones ~ she told me that they had received my appeals information and have thoroughly reviewed it before passing it along to the medical director. Then what she told me just blew me away ~ she told me that the medical director had approved BOTH surgeries at TCI!!!! BOTH ~ both the tethered cord and the brain decompression. I couldn't believe what I was hearing ~ then I started to cry ~ tears of joy, relief, thankfulness! God hear our prayers ~ and answered them ~ The funny thing is that the medical director's decision was probably already made by close of business on Friday.

When the woman on the other end of the phone heard me crying she told me to hold off, because she wanted to get through what she needed to tell me and wanted to get off the phone before she too started to cry. Obviously, I am very humbled by the news and I think the shock of it all hasn't worn off, either. To solidify my good news ~ I got clinical confirmation from the geneticist that I do indeed have Ehlers Danlos and I had blood work done to see if we can pinpoint which type I have. God is awesome!

Miracles still happen today ~

It's time for letting go
All of our "if onlies"
Cause 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 called 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
It's right there in front of you
And I don't want you to miss the miracle of the moment

You Are A Pain In The Neck!

Dearest Brain Tail,

It has been lovely getting to know you so intimately over the past year. Your photo shoots have been stunning. The light from the MRI machines makes you look ten years younger. Even though you are family, twice removed on my mother's side and kissing cousin to the medulla oblongata family, I feel like it's time we had a heart to heart talk.

When you discovered the secret passage way through the foramen magnum and decided to move your stuff into my spinal column, what WERE you thinking? I know the space just oozed with spinal fluid goodness, but seriously, did you think I wasn't going to notice? When you bang on your drum set it gives me a pounding headache. Your frat parties are so wild that they make me stumble around like a drunk sailor who just got off the scrambler ride at the carnival! How exactly am I supposed to explain that to a police officer? Got any brilliant ideas Einstein??? I feel like I am losing my mind!

Quite frankly, you are a pain in the neck, true story! My buddy the spinal cord doesn't really enjoy your company. He's quite the introvert and needs his own personal space. When you irritate him, he sends electrical shocks up and down my arms to get my attention. He thinks he's being subtle, but believe me, I get his messages loud and clear. The whole roomie thing is not going to work out. I have been worried sick and have had insomnia over this whole situation.

Truth be known, I like you, you are kin, but you have got to move your carcass back into the skull ~ that's where you belong. It's only a matter of time before a surgeon comes in and evicts you. We can do this the easy way or the hard way, it's your choice. Either way, it's going to hurt like hell. It's possible you could get burned from this relationship and never be the same again. We will do our best to expand the space so you won't feel so crowded anymore. So, yeah, you are going to have to move out. I have dreams and plans and I am done dealing with your adolescent behavior ~ I am so over it! I am taking my life back!

He Will Carry Me

Hold tight ~ when all hope is gone ~ he is all the strength that I will ever need ~ He will carry me ~

I call, You hear me
I've lost it all
And it's more then I can bear
I feel so empty

You're strong, I'm weary
I'm holding on
But I feel like giving in
But still You're with me

(Pre-chorus and Chorus)
And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me

I know I'm broken
But You alone
Can mend this heart of mine
You're always with me

And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
He will carry me

(Bridge)
And even though I feel so lonely
Like I have never been before
You never said it would be easy
But You said You'd see me through the storm

And even though I'm walking
Through the valley of the shadow
I will hold tight to the hand of Him
Whose love will comfort me
And when all hope is gone
And I've been wounded in the battle
He is all the strength that I will ever need
He will carry me
He will carry me
He will carry me

Picketing and Protesting

One of my dear friends, E, blogged about me yesterday ~ Her ferocious attitude toward the bottom dwellers has given me strength to keep up the fight. She has supported me every step of the way ~ Should the need arise to take action ~ she will be there in a heartbeat! We started entertaining this dialog as our plan of attack unfolds:

Me: your blog was perfect ~ and just wait ~ I might just have you write a letter for me or better yet ~ we could protest and throw eggs outside of the scum-sucking-bottom-dweller's headquarters ~ we will wear sunglasses of course so no one will recognize me!

E: you'll be stumbling around like you are drunk, they'll have you arrested for public intoxication! yeah, sunglasses are going to hide you

Me: LOL! That's why you are there ~ my wing woman ~ I can't look drunk without a partner in crime!

E: silly ~LOL ~ tell you what, I'll get drunk so we can be the same

We will certainly look much cooler than the prohibition picketers of the early 1900's! But seriously, something has to happen just to get them to realize that this is an urgent matter. I have sent word to the local newspaper in hopes that someone will want to write about my story ~ I want to raise Chiari awareness so that others won't have to put up with the antics of jumping through fire hoops and walking on water just to get out-of-network surgery! Door to door to the Chiari Institute it's 171 miles from my house...to be continued...

Is it just me ~ or does anyone else hear in the background ~ "Why is all the rum gone? "

Wear Sunscreen

I love this speech and stumbled upon the audio file to go with it ~

"Wear Sunscreen Speech"

Ladies and gentlemen of the class of '97.

Wear Sunscreen.

If I could offer you only one tip for the future, sunscreen would be it. The long-term benefits of sunscreen have been proved by scientists, whereas the rest of my advice has no basis more reliable than my own meandering experience. I will dispense this advice now.

Enjoy the power and beauty of your youth. Oh, never mind. You will not understand the power and beauty of your youth until they've faded. But trust me, in 20 years, you'll look back at photos of yourself and recall in a way you can't grasp now how much possibility lay before you and how fabulous you really looked. You are not as fat as you imagine.

Don't worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4 pm on some idle Tuesday. Do one thing every day that scares you.

Sing.

Don't be reckless with other people's hearts. Don't put up with people who are reckless with yours.

Floss.

Don't waste your time on jealousy. Sometimes you're ahead, sometimes you're behind. The race is long and, in the end, it's only with yourself. Remember compliments you receive. Forget the insults. If you succeed in doing this, tell me how. Keep your old love letters. Throw away your old bank statements.

Stretch.

Don't feel guilty if you don't know what you want to do with your life. The most interesting people I know didn't know at 22 what they wanted to do with their lives. Some of the most interesting 40-year- olds I know still don't. Get plenty of calcium. Be kind to your knees. You'll miss them when they're gone. Maybe you'll marry, maybe you won't. Maybe you'll have children, maybe you won't. Maybe you'll divorce at 40, maybe you'll dance the funky chicken on your 75th wedding anniversary. Whatever you do, don't congratulate yourself too much, or berate yourself either. Your choices are half chance. So are everybody else's.

Enjoy your body. Use it every way you can. Don't' be afraid of it or of what other people think of it. It's the greatest instrument you'll ever own.

Dance, even if you have nowhere to do it but your living room.

Read the directions, even if you don't follow them.

Do not read beauty magazines. They will only make you feel ugly.

Get to know your parents. You never know when they'll be gone for good. Be nice to your siblings. They're your best link to your past and the people most likely to stick with you in the future.

Understand that friends come and go, but with a precious few you should hold on. Work hard to bridge the gaps in geography and lifestyle, because the older you get, the more you need the people who knew you when you were young.

Live in New York City once, but leave before it makes you hard. Live in Northern California once, but leave before it makes you soft. Travel.

Accept certain inalienable truths. Prices will rise. Politicians will philander. You, too will get old. And when you do, you'll fantasize that when you were young, prices were reasonable, politicians were noble, and children respected their elders.

Respect your elders.

Don't expect anyone else to support you. Maybe you have a trust fund. Maybe you'll have a wealthy spouse. But you never know when either one might run out.

Don't mess too much with your hair or by the time you're 40 it will Look 85. Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.

But trust me on the sunscreen.

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