Healing Hands of God

My eyes have been opened again by the lyrics of another song. Healing is an organic process ~ it ebbs and flows; but I haven't thought about this question in a while: Do you want to be healed? YES YES YES a thousand times ~ YES! I have to reach out and receive the healing hands of God.

Next comes the tricky part ~ what parts of my life need healing? Well the obvious in the physical ~ next comes the emotional piece. As the healing process moves forward, more layers are peeled back and more brokenness is revealed.

Just the other day I was chatting with a chiari friend of mine. We have never met in person, but I felt an instant sisterhood with a woman who has decided to take a leap of faith and schedule her decompression surgery this month. I am so blessed to have two surgeries behind me and have gained immense perspective on the big picture of living as a Chiarian. I love being able to share my chiari journey and encourage those along the way. I don't have all the answers, but I do know that putting everything in God's hands ~ deep breath ~ makes it a little bit easier to survive each day. I am greatly encouraged by the faith of those around me who continue to let the Lord guide their life!

How are you encouraged? We all have our responsibilities ~ we have jobs to go to, bills to pay, meetings to attend, relationships take time and energy. In a perfect world I would make a living helping other Chiarians get through life, especially the difficult days. Life can seem utterly impossible some days ~ I know, I have those days, still. although they are fewer and farther between now. I encourage you to keep in touch with your friends and let them know that they are not alone. Together, we can make this Chiari journey an adventure ~ may you be renewed today with the hope that one day, there will be a cure for Chiari

Healing Hand Of God ~ Jeremy Camp

I have seen the many faces,

I fear in the pain.

I have watched the tears fall plenty,

From heart ache and strength.

So if life's journey,

Has you weary and afraid.

There's rest in the shadow of his wings.

I have walked through the valleys,

The mountains and plains.

I have held the hand of freedom,

It washes all my stains.

If you feel the weight of many trials,

And burdens from this world.

There's freedom in the shelter of the Lord.

Chorus:

I have seen,

The healing hand of God,

Reaching out and mending broken hearts.

Taste and see the fullness of His peace,

And hold on to what's being held out.

The healing hand of God.

I have touched the scars upon His hands,

To see if they were real.

He has walked the road before me,

He knows just how I feel.

When you feel there is not anyone,

Who understands your pain,

Just remember all of Jesus' suffering.

(Chorus)

Cast all your cares on Him,

For He cares for you.

He's near to the broken and confused.

By His stripes,

Our spirit is renewed.

So enter in the joy prepared for you.

(Chorus)

The healing hand of God (x2)

And hold on to what's being held out (x2)

The healing hand of God

Oh Oh Oh Oh

Conquer Chiari Walk ~ 2009

So I am a little late on posting about the chiari walk that took place on September 26th ~ life has been crazy busy. The morning of 9/26 was absolutely gorgeous ~ the sun was shining and the air was crisp. I don't know the final count of how many walkers participated, but there was a good size crowd of brain tails and their friends/family. I ended up being the grand Marshall for our walk, because I was the only one who knew the route. Thank goodness the vertigo is gone or it would have been a swirly walk for everyone!

The best part of the brain tail gathering was being reunited with my brain tail friends who came from near and far. So good to see everyone and spend time catching up on our lives. We are all a hearty bunch. On the outside you might see smiles, but inside we are all struggling with either pain, financial burdens due to the aftermath of insurance bills, emotional stress ... We have our good days and other days when it's a struggle to crawl out of bed. Getting together reminds us that we are not alone in our chiari journey ~ we draw strength from one another ~ and make that choice to keep taking the next step forward in life. It's not easy, but we are all fighters ~ bound and determined to not let chiari win.

Thanks to all of you who support a chiarian in one form or another ~ every day we are one step closer to conquering chiari.

Sisterhood/Brotherhood of the Traveling Brain Tails

Next week on September 26th, I will be walking alongside other brain tails, friends and family in the second annual Conquer Chiari Walk Across America walk here in the Albany area. Participation is free but you can make a donation on the day of the walk or online. Here's the link for the online donations ~ https://www.conquerchiari.org/ccwaa09/ccwaa_donate.asp?user=LacieHeiser ~ If you would like to sponsor me, select the Walk Location: New York, Albany ~ Then you can select my name. Even if you don't have much to give, even a little can add up.

September 26th is an emotional and significant day for me. My chiari brain tail was discovered on 9/26/06 ~ three years ago. As I pause to glance over my shoulder and reflect on my three year that has brought me here today, I am overwhelmed with every emotion ~ fear, denial, disappointment, hopelessness, hope, pain, elation, frustration, sadness, joy. How did I make it through those incredibly tough times? All of the neurologist appointments, hours of phone calls with the insurance company, volumes of paper work, countless MRI and CT scans, tethered cord surgery, invasive cervical traction, brain decompression, morphine pumps, hours of physical therapy ~ all these things and more have consumed my life for the past three years. Every baby step I took was taken in faith ~ a blanket of reassurance to keep me moving forward.

As I briefly glanced at the list of walkers signed up for Albany walk ~ I recognize and know a large number of people. These amazing individuals were strangers to me and now have become instant friends all because of our brain tail bond. I am so thankful for all the friends I have made through my chiari journey ~ they have made the road a lil bit easier to tread upon.

We all walk to raise money for chiari awareness and research to one day find a cure. There IS NO CURE FOR CHIARI. Painful surgeries will help prevent some irreversible nerve damage and perhaps paralysis. But if I would dare to speak for many other brain tails ~ we all live with some degree of pain on a daily basis ~ We deal with it and keep moving forward. But wouldn't it be awesome to find the gene that goes crazy during gestation to put a stop to chiari once and for all. Life is for the living. I'm looking for the brighter days, won't you join me?

CONQUER CHIARI WALK ACROSS AMERICA

WHAT? A series of coordinated Chiari walks held at the same time across the country.

WHERE? This year, the walk will take place at more than 30 locations. Check the List of Sites to see if there is a walk near you.

WHEN? Saturday September 26th, 2009. September has been named Chiari Awareness Month in many states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.

WHY? To raise awareness of Chiari and to raise money for vital research. In 2008, the Walk Across America raised $170,000 for research, with 90% of the money going directly to fund exciting research projects at major universities and treatment centers.

Forget Me NOT

I just finished reading another inspiring book ~ Forget Me NOT by Jennifer Lowe-Anker. What an incredible journey the author has had thus far ~ her strength and courage have inspired me to live more in the moment and get started on my own memoir. Ever since I picked up Ghosts of Everest I have been spellbound with the mountain and the mountaineers who climb the highest peak on the planet. You know, you've probably read about many other blogs where I have yammered on and on about Everest (29,035 feet) ~ but seriously, I can't help myself. This feeling that wells up inside me when I open up a book about someones journey up the mountain is indescribable.


I have some theories ~ maybe my brain is re-playing some heart memories of some distant relative who climbed Chomolunga-The Goddess Mother of the World. Perhaps I identify with the incredible endurance of the human spirit to keep moving forward even when you have nothing left to give. Anyway, with each Everest book I have read I have learned about the greatest mountaineers on the planet. Their stories are intertwined in the brotherhood of the rope.


One climber in particular I have grown to greatly admire and respect ~ Conrad Anker. Not long after he discovered George Mallory's body on the North side of Everest he was in a deadly avalanche in which he narrowly escaped. His best friend, Alex Lowe, and Dave Bridges lost their lives that day. Since that tragic day, Conrad has gone on several other expeditions, has started a Khumbu Climbing School and married Jennifer Lowe-Anker.

So, this weekend I was up in the Keene Valley with some friends at the 13th Annual Mountainfest ~ both Conrad and Jennifer Lowe-Anker were doing a slide show presentation about her book and Conrad's expeditions. I had both of them sign some books ~ it was amazing meeting them both! I also had a chance to go on a snow-shoeing outing ~ shhhhhh don't tell my surgeons. There wasn't anything on my discharge papers that said 'no snow-shoeing' ~ it just said no vacuuming for 3 months! Despite the bitter cold ~ it was down in the negatives at night and a high of 13 on Saturday ~ I had a great time this weekend relaxing and breathing in the sweet mountain air.

Season of Healing

A friend of mine sent me a really neat e-mail message the other day that really resonated with me.  I have pasted it below. What really got me thinking was the metamorphosis of my zipperhead. If you've been reading my blog, you have seen the picture posted of my newly shorn head. It's been 16 days since my surgery and I have healed so well, my hair is growing back quickly.  I guess what I am trying to say is we all see things differently. 

An innocent web surfer who would stumble upon my picture might gasp in horror at the sight of my zipperhead. But to me, friends and family, who have walked along side me during my chiari journey might view my zipperhead differently.  To me, it's definitely a victory badge ~ a sign of the end of one journey and the beginning of a new, healthier one. A wise friend of mine referred to my scar as 'a line of strength and determination' ~ I really like the sound of that! 

There was an Indian Chief who had four sons. He wanted his sons to learn not to judge things too quickly. So he sent them each on a quest, in turn, to go and look at a pear tree that was a great distance away.

The first son went in the winter, the second in the spring, the third in summer, and the youngest son in the fall.

When they had all gone and come back, he called them together to describe what they had seen.

The first son said that the tree was ugly, bent, and twisted.

The second son said no it was covered with green buds and full of promise. 

The third son disagreed; he said it was laden with blossoms that smelled so sweet and looked so beautiful, it was the most graceful thing he had ever seen. 

The last son disagreed with all of them; he said it was ripe and drooping with fruit, full of life and fulfilment.

The Chief then explained to his sons that they were all right, because they had each seen but only one season in the tree's life. 

He told them that you cannot judge a tree, or a person, by only one season, & that the essence of who they are and the pleasure, joy, and love that come from that life can only be measured at the end, when all the seasons are up. 

If you give up when it's winter, you will miss the promise of your spring, the beauty of your summer, fulfilment of your fall. 

Moral: 

Don't let the pain of one season destroy the joy of all the rest. 

Don't judge life by one difficult season. 

Live Simply. 

Love Generously. 

Care Deeply. 

Speak Kindly. 

Leave the Rest to God. 

Happiness keeps You Sweet, Trials keep You Strong, Sorrows keep You Human, Failures keep You Humble, Success keeps You Glowing, But Only God keeps You Going!

Happiness Is...

I am learning to find joy in the little things ~ anything to shed light on this narrow dark path. Reconnecting with friends on Facebook has brought me more joy that you can possibly imagine. So ~ what do you say to a friend when you are reconnecting after 20+ years? How do you sum up all those years since high school, since camp, since college?

It's a fine line ~ the boundaries between the safe answers and the raw, ugly truth are fuzzy. I am a straight shooter, maybe it's the Texas blood that pulsates through my veins. It's incredibly hard for me to BS my way through a conversation without mentioning the only thing on my mind, "Hey ~ did I tell you that I am having brain surgery in a couple of weeks?" There is no smooth transition. I find myself not sharing with some, because I know that they won't know what to say in return ~ what do you say? But seriously, it's still me ~ just because my brain is sliding out of my head doesn't define me completely. Although, it has put a damper on my bubbly personality.

Therein is the beauty of friendship ~ those who really know me offer prayers, support, a shoulder to lean on. Friends share life's joys, disappointments, sorrows ~ that's the glue that binds you. Life is messy ~ TRUE STORY ~ no matter what you are going through, no matter how dark and scary, know that if we are friends I will be there for you, no matter what might come strolling down your path. Don't be afraid to share your life, let someone join you in your journey. It makes life more bearable to have a friend walking by your side.

Ah ~ yeah ~ still in a place called VERTIGO

So, what's a girl to do when vertigo comes over for happy hour and decides to stay a while!? Any ideas ~ I welcome them all ~ SERIOUSLY ~ so over the vertigo. I would like to know when vertigo is planning on leaving ~ any time now is good for me! Make sure your stare at the picture above, at least long enough to feel what I have been feeling.

So ~ last weekend was the first ever conquer chiari walk across America. I haven't seen the total numbers of how much was raised on that day, but here in Albany, NY ~ we raised $6,000 just on the day of the event. That's not counting online donations. Thanks so much to all who donated! I was blown away by the number of people at the event ~ over 200 came out for the walk. Even though the walk was a brief lap around the park, the chance to get together with other brain tails was priceless. It was so awesome to finally meet one of my blog buddies ~ D. Hall ~ (that's D. in the middle and a new chiari friend, Nancy) please lift her up in your prayers as she is having surgery on 9/30/08.

My Brain Tail discovery day is coming up this Friday, September 26th ~ it's been almost 2 years since I was diagnosed with Chiari. The friends I have made on line through my blog and yahoo chiari groups have meant the world to me. It's like the Sisterhood of the Traveling Brain Tail. We instantly have a bond and even though Chiari manifests itself differently in each person ~ we understand what it feels like. The support has been encouraging and downright sustaining at time s when I just wanted to curl up and hide under a rock. I laugh and make fun of all my crazy symptoms, but deep down, I am so ready for my real life to begin. Why me ~ why now ~ like my Mom said today, "There has got to be a pony in there somewhere." My response was ~ "Make that a unicorn disguised as a zebra!"

Some of you have asked how I have been feeling ~ truthfully ~ it's been bad lately. Probably worse than I remember pre de-tethering. Between the increasing brain fog, vertigo and headaches, I am kicking myself for scheduling my surgery so far out. December seems months away. I am trying to take it day by day ~ try to look forward to something that will distract me from the harsh reality of brain surgery. Thank goodness for our DVR and all the season of show starting ~ escapism rocks!

Before I sign off ~ I do have a bit of good news ~ my youngest daughter, Skyler, had her consult appointment with a neurosurgeon yesterday. The hair rose up on my neck like a porcupine's quills when we entered the doctor's office. You see, this is the same practice where 'the godfather' practices. Here's the link if you don't remember ~ http://livelovelaugh-lace1013.blogspot.com/2007/07/is-it-there-if-you-cant-see-it-on-mri.html. So bizarre for me not to be the patient this time around. Anyway ~ to make a long story short, absolutely adore the doc ~ very sincere ~ he ordered a full MRI ~ brain to spine for Sky. Her MRI is on 10/9 ~ pray that we get through it without sedation. I want the truth to be revealed. Clear answers so that we know what to do next. Of course we aren't planning on moving forward with any treatment for Sky until next summer at the earliest. I can't even go there right now ~ but knowing what I know about EDS ~ Chiari and Tethered Cord ~ I have to make sure that my children don't have to go through brain surgery, too.

Random ~ anyone out there watching the new show on FOX, The Fringe? So love it already ~ can't wait for Grey's Anatomy to start tomorrow ~ it's the little things that make me smile.

Paradox Lake

The photo above is a view from the campsite from the camping trip this past weekend. There's nothing like spending a couple of nights in the mountains to soothe the soul. Even with the threat of isolated thunder storms in the area the weather was sunny and hot. We even had the chance to go on a hike and dip our toes in the lake.

I had high hopes of hearing some more owl serenades and was thrilled to hear two different owl calls. First I heard an Eastern Screech-Owl. You could easily mistake their call for the whinny of a tiny pony. Saturday night there was a brief Barred Owl serenade ~ their calls sound like "who cooks? who cooks for you?"

The weekend went by so fast, but I feel relaxed and rested. The campground was pretty much empty so we had the freedom to laugh and talk until the Jurassic moths were threatening to take over our campsite. Yin Metal Rooster, Yin Wood Rooster, Yin Metal Snake ~ thanks for the memories and I am looking forward to the next camping adventure. Yang Fire Tiger ~ Out

PS. Next time you play Cranium and you get this question ~ What State flies this flag? Remember that the answer is MARYLAND!!! Also ~ 'flammable' and 'inflammable' mean the exact same thing ~~~

I Want To Believe

More news on the new X-Files Movie, I Want To Believe. Did I already tell you that I am super excited about the cinematic reunion of Scully and Mulder ~ Chris Carter is already mulling over the idea of shooting yet a third X-Files based movie!

But six years after the series ended (and a decade since the last film),
the new movie promises to be a lot more straightforward than fans of the show
might expect. Written by series creator Chris Carter and his right-hand man
Frank Spotnitz — and stemming from an idea they'd been kicking around for years
— it's a stand-alone story, set in the winter of 2008, that Carter describes as
a ''suspense thriller'' akin to the monster-of-the-week episodes from the show's
early days. Gone is the occasionally baffling mythology — Black oil! Ice picks!
Bees! — that came to define the series. The new film is designed to satisfy the
faithful while courting a new generation of fans raised on Saw and Hostel. ''Oh,
it's a great relief to not have to reweave all the strands of the narrative,''
says Spotnitz. ''We just wanted to tell a really good story with characters that
we love.''

My fellow nerdling,sci-fi nut friend and guest blogger, E, are planning an X-Files road trip when the movie opens this July. You see, she lives in Virginia and I in New York ~ so halfway between the two is Moosic or Scranton, Pennsylvania. If anyone has a favorite place to eat in either of those cities, let me know. An extra bonus for the road trip would be to find a store that sells Shiner Bock beer ~ the Texan in me yearns for Texas beers in the heat of the summer!

These Are the Signs of Life

I awoke from an intense dream this morning. In my dream a good friend of mine was really upset and crying ~ she told me that someone very dear to her had passed away. When I woke up my heart was heavy and I was planning on e-mailing my friend as soon as I had a cup of coffee to make sure that she was OK. To my surprise, she beat me to the punch ~ there was an e-mail from her already in my inbox! Sadly, she was e-mailing me from a funeral of a good friend. JTM ~ sending you a big hug across the miles!

You might have read in earlier posts that I have a hard time getting to sleep. It's hard to turn my brain off ~ I believe that my brain tail is to blame most of the time. I have learned to follow up on dreams that pull at my heartstrings. As demonstrated this morning, there's a reason why people show up in my dreams. No wonder I am so exhausted in the morning! I have a theory that other people with Chiari malformations are also ultra sensitive to other's emotions ~ no matter how far away they might be. I know that no one in the medical community would verify this, but I have come to know that the brain tail isn't all that bad!

What a beautiful day it was today! While I was walking along the river I saw signs of life everywhere ~ munks (chipmunks), caterpillars, baby robins, geese, ducks ~ and some of the trees were beginning to bud, too! Much to my surprise, I have sun kissed shoulders to prove that I spent more than an hour under the blue skies and brilliant sun this afternoon.

I was checking out the site meter on my blog and was amazed how many hits I got last night after the re-airing of the Extreme Makeover about the Carter Family. I usually get about 40 visitors on the site a day and just in the three hours after the show aired I got 150 hits. Today so far I have about 111 hits. I am beyond thrilled that education about Chiari Malformations is getting out there ~ being educated about the disease is half the battle. Even though I don't agonize and blog daily about the pains of having a brain tail I am always thinking of those of you out there that also have Chiari. Remember, I still have my brain tail, but it's just not beating up on me as bad as before the detethering.

Fun With Friends

Last night I went our for dinner and a movie with friends. These friends of mine are part of the camping group that I camped with this past summer/fall. When two or three of us get together there is sure to be lots of laughing ~ good times.

We went to see Vantage Point ~ the movie was good but not what I was expecting. All I can say is that Dennis Quaid has fierce driving skills and he should definitely secure a part in the next Bourne movie!

Laughter has incredible healing powers ~ thanks, S & L for making me feel more human than I have felt since surgery. Can't wait for our next caper ~

Let's Call This One A Speed Bump

Call me crazy ~ but I really don't see what the big deal is! This first surgery is just like a kinda big speed bump compared to the big bad brain surgery. A "warm up" to the big dance ~

This weekend was filled with time spent with friends. Walks ~ meals ~ movies ~ prayers ~ and lots of phone calls. I am profoundly amazed at the outpouring over Lil ole me ~ Seriously ~ thanks to all of you who have reached out to me ~ feels good to be facing surgery knowing that there are a lot of prayers being lifted up for me.

My last day at work is tomorrow before my extended leave for the Chiari Spa! Feels so weird tying up loose ends ~ passing the baton. I am so blessed to work with some amazing people ~ they were there when the now infamous phone call came in ~ breaking the news to me that I had something in my brain called a Chiari Malformation. They have seen me at my worst and yet they can still joke around with me about blaming everything on the brain tail. Seriously ~ I love all of you guys (and girl) ~ your support has meant the world to me and has really eased this journey for me. Even though I'll be out of the office I will be lurking on-line ~ I expect a good flow of IM's from the 'green room' team ~ or I will threaten to send you guys left over brain tail bits and pieces ~ TRUE STORY!

Gotta finish up packing tonight ~ how do I pack for a stay at the hospital ~ kinda silly if you ask me. I am sure I will be wearing the uber luxurious hospital gowns the entire time I am there!

What's around the river bend?

I feel like I have a new perspective ~ I have finally made it up the hill ~ cut through the red tape and I can look back at how far I have come. What's around the river bend? What's above the next peak? I am trying to sit with the enormity of the tasks ahead of me ~ do I have some available time in my schedule for brain surgery? Sure, why not.

Friends and family have been my glue that have kept me together during my daily struggles, but one friend in particular has been right by my side every dizzy step along the way! Erica is one of those friends who is passionate about life ~ she asks the ugly questions ~ she wants to know every detail about how my body is falling apart ~ life is messy ~ she gets that ~ it's refreshing to be able to be so real with her. In the same breath, she's the kind of friend that can make me laugh until the tears come.

She posted a blog entry about me yesterday ~ she has an incredible talent to really listen to me and express how I am feeling when I can't find the words. I love you, sister, my friend!

Up To The Mountain

Today is the day ~ driving into work this morning the streets were shrouded by an early morning fog. The imagery mirrors my path ~ veiled in fog with street lamps along the way to keep me on the path. At this point, I don't know quite what to expect as I prepare to meet surgeon #5 ~ I just want him to take action ~ hear me out ~ schedule surgery ~ let's get the show on the road already!

My sister made me a birthday CD mix last week ~ this song instantly brought tears to my eyes ~ it echoes my journey ~ plodding up the mountain ~ the journey is hard ~ but with perseverance I will reap the benefits of the breathtaking view on the summit. It reminds me that I am not alone ~ some days are harder than others ~ but my friends and family give me the strength and courage to keep going. I first heard this song when Kelly Clarkson sang it ~ both versions are beautiful ~

Up To The Mountain ~ Patty Griffin

I went up to the mountain
Because you asked me to
Up over the clouds
Where the sky was blue
I could see all around me
Every, Everywhere
I could see all around me
Everywhere

Sometimes I feel like
I've never been nothing but tired
And I'll be working
Till the day I expire
Sometimes I lay down
No more can I do
But then I go on again
Because you asked me to

Some days I look down
Afraid, afraid I will fall
And though the sun shines
I see nothing at all
Then I hear your sweet voice
Come and then go
Telling me softly
You love me so

Camping

I am still brushing the wood smoke from my eyes, a feeling of calm has settled inside, my hurried pace of life has slowed a wee bit. Camping this past weekend was just what I needed ~ sleeping under the stars, sitting around a campfire and laughing with friends, hiking in the mountains ~ I could see fingerprints of God everywhere I looked. What an amazing creator He is ~ the fall foliage is almost at it's peak in the Adirondacks ~ the brilliant red leaves took my breath away! (The picture posted is the view from our campsite ~ I didn't take it myself)

When I drove up to the campsite, the park ranger informed me to be on the look out ~ the camp site was on bear alert ~ black bears had been sited in the camp. I guess my reading up on black bears was not totally fruitless ~ I knew what to do if I happened to run into one of them in the middle of the night. However, nothing prepared me for the incredibly mournful and creepy sound of the loons in the middle of the night! Think about any film where campers in the woods are attacked by some crazed woodsman ~ cue the creepy music ~ and you hear the loon ~ I nearly jumped out of my skin! The loon wail sounds very similar to the call of wolves and coyotes.

All things considered: bacteria water warnings, a blue heron with the wing span of a pterodactyl, scurrying creatures in the middle of the night, sub-zero Arctic temperatures, the assistant to the den-mother, tales of working in factories, headlamps the size of street lights, a couture armadillo purse, out gassing smores, coin-op showers and tons of other tales that will remain unmentioned to protect the innocent ~ I had a relaxing, spirit renewing weekend. BTW ~ no bears were sighted while we were there!

Baby Brain

My blog buddy Queli has finally had her surgery at TCI this week and she has begun the long road to recovery. My prayers go out to her ~ she has finally found resolution in having the surgery. Prayers have been answered ~ all it took was a ginormous leap of faith! Like others who have gone on ahead of me on this winding Chiari road ~ she is an inspiration to me and she continues to cheer me on in my journey.

Now it's time that she baby her noggin and get a month or two of some good old fashion rest and relaxation. Attawaytogo Queli ~

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? "

You Find Out Who Your Friends Are

I have truly found out who my friends really are over the past year ~ Not everyone can handle the harsh reality of brain surgery. Some smile politely ~ a forced smile creeps across their face ~ I can tell that they just want to turn & run ~ Fear can paralyze a person. I totally understand that some people just don't have the coping skills to be comfortable with someone else's pain. Although I understand this ~ it's still painful knowing that I won't be able to fully share this journey with some of my most adored friends. It is part of the grieving process ~ letting friends go, knowing that after my 'brain is fixed' ~ they will come out of hiding ~ once the turmoil has settled.

On the other hand, friends I thought were gone forever have suddenly come back into my life. This has brought great joy to my heart and has returned a smile to my face. There is nothing in the world like the feeling you get when you talk with a lifelong friend who has been absent for far too long. You pick up where you last left off ~ it's like no time has passed.

The reactions that I have gotten from friends has been as varied as the flavors of Jelly Belly jelly beans. My co-workers don't miss one opportunity to make a brain joke or make up some new lyrics with the word 'brain' in it ... think 'Blame It On The Brain' to the tune of a famous Milli Vannilli song. In my true sarcastic form ~ I retaliate with idle threats to send FedEx the left over brain parts from my surgery if they don't stop making fun of me and my big brain! So ~ my brain is bigger than yours ~ deal with the facts ~ I can't help it ~ I was born this way.

I have one friend who is truly a soul sister $:)$ ~ she has been my sounding board and my comic relief. She has offered to sit by my side and hold my hand during and after surgery as long as I have a single, wealthy, good looking McDreamy Neuro-surgeon. True story! Seriously ~ when I have told her about yet another insurance roadblock she has threatened to come up here and do some negotiating on my behalf. She asks me on a daily basis how I feel ~ she doesn't ever want the sugar coated answer ~ she really wants to know the truth.

I am convinced that God puts people in our lives so that we can handle life ~ I just couldn't do it without their support. There are sooo many of you out there ~ you know who you are ~ Thanks for listening to me ramble on about doctor appointments, vertigo, headaches, brain farts ~ it all sounds so boring after a years time, I am sure of that! I have really been mulling over Oriah Mountain Dreamer's The Invitation lately ~ Her message is raw and real ~ I am discovering what sustains me when everything else shrivels away...

The Invitation byOriah Mountain Dreamer

It doesn't interest me what you do for a living. I want to know what you ache for, and if you dare to dream of meeting your heart's longing.

It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn't interest me what planets are squaring your moon. I want to know if you have touched the center of your own sorrow, if you have been opened by life's betrayals or have become shriveled and closed from fear of further pain!I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it, or fix it.

I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.

It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself; if you can bear the accusation of betrayal and not betray your own soul; if you can be faithless and therefore trustworthy.

I want to know if you can see beauty even when it's not pretty, every day,and if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand on the edge of the lake and shout to the silver of the full moon, “Yes!”

It doesn't interest me to know where you live or how much money you have. I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children.

It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the center of the fire with me and not shrink back.

It doesn't interest me where or what or with whom you have studied. I want to know what sustains you, from the inside, when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

TEX ROBERTSON ~ May His Zeal For Life Live On

Tex Robertson 1909-2007 ~ passed away yesterday. I just got word of his passing late this afternoon. I am awestruck by the outpouring of love to Tex and his family that he has left behind. The man has touched millions of lives and made them smile. I am thankful that his passing happened after all of the camp terms were complete ~ what a blessing. There is a memorial service for Tex being held at Camp Longhorn this Saturday afternoon ~ if I didn't live so far away I would be there in a heartbeat. The gathering will be of thousands ~ I am sure ~ for just the population of campers, counselors and alumni alone could fill up Inks Lake Camp.

I posted earlier in the year a post about Camp Longhorn ~ without camp I would be a completely different person ~ seriously. Tex Robertson set the tone for camp more than 65 years ago (1939)~ celebrate life ~ today is a great day and I feel great! ~ life is punny ~ a positive attitude is contagious ~ friends made at camp are friends for life ~ make the best of every situation life throws you ~ Camp Longhorn is a timeless place ~ a place where everybody is somebody ~ a place I call home.

Tex has given so much of himself to the campers and counselors at CLH ~ he knew each and every one of us by name. I will remember him forever ~ especially the time he came to campfire as Dr. Schwartz ~ he drove the station wagon right into the campfire stage ~ then proceeded to get bitten several times by the snakes he was handling ~ he was bleeding all over the place but didn't even notice because he was having so much fun. Tex, may your joy and zeal for life carry on in those whose lives you touched. We will miss you ~

Here are some of the articles posted about Tex:
Tex
Former Texas Swim Coach Tex Robertson Dies At the Age of 98
Tex tribute on Camp Longhorn Site
Former Men's Swimming and Diving Coach passes way
Tex Robertson, camp founder and ex-swim coach, dies


Associated Press quoted Governor Rick Perry as saying: "Tex Robertson was a Texas original whose personal integrity and commitment to children touched countless lives. His legacy will live on in the hearts of thousands of campers and counsellors who were forever impacted by their time at Camp Longhorn."


"... making friends for the world to see...if your friends are there everything is all right.."

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.