Wednesday, August 27, 2008

Just Throw It To the Cat

I was doing some homework last night, viewing the latest Tethered Cord video hosted by my brilliant surgeon, Dr. Bolognese at TCI. Skyler has an appointment with a neurosurgeon in late September to discuss the possibility of a tethered cord diagnosis and I want to make sure that I have a great deal of ammunition. You can watch the video by clicking on this link (Chiari TCS) 

So what's up with the cat reference? Dr. B made a reference in the video to the filum terminale (a slender, threadlike prolongation of the spinal cord from the conus medullaris to the back of the coccyx) ~ basically the filum is connective tissue and is not a nerve structure (does not conduct electricity), loosely anchoring the spinal cord to the spine. His humor is so dry and totally unexpected from a neurosurgeon ~ he says that if you cut the filum terminale and throw it to the cat then you will be fine. LOL ~ What a great illustration! Amazing how such a harmless piece of connective tissue can cause so much damage!

He goes on to explain that if you have a boat anchor with a rope that is too small there will be some tilting of the boat. Love the way he explains things so simply so that you can understand what is going on. My instincts are telling me that Sky is wired the same way as me and I am praying that by having her detethered at an early age she won't ever have to have brain surgery. Praying that the tethered cord is obvious and visible so that there is no question that she has it.

Monday, August 25, 2008

Endless Thundering Motion

What is it about the endless thundering motion of the ocean that seems to wash all my cares and worries away? As soon as I can hear the sound of the surf, they become a vapor, a distant memory almost instantly. How can a force of nature have such healing powers over me?

Each summer, we make the pilgrimage to Cape Cod ~ usually we rent a house with family and friends and stay for a week. This year we are doing a quick weekend trip and we are going to experiment with roughing it, tent camping style. We plan on keeping it simple ~ tent, sleeping bags, bathing suits and don't forget the boogie boards.

I remember this time last year, walking along the beach, gathering a collection of rocks that resembled brain tails ~ thinking, this time next year, just possibly, I might be done with the whole brain surgery thing. Time seems to have a mind of it's own. Lately, my watch is literally speeding up with each day. I just reset my watch a month ago and it's already verging on being 20 minutes fast. I see the irony ~ time is speeding up ~ even though December seems a long way out there, time is flying by ~ seriously moving...

So ~ I am really looking forward to vacationing with the family this Labor Day weekend ~ praying that I am as pain and vertigo free as possible. Hoping for renewed strength and insight ~ cast my worries to the wind and let the ocean do it's job ~ restore strength and hope.

Wednesday, August 20, 2008


Several weeks have passed since I drove three hours to watch I WANT TO BELIEVE with my sweet, uber X-Files nerdling friend, Erica. She posted her review of the movie last week ~ brillance, I tell you ~ I can't even aspire to match her post ~ so if you care to read it ~ click on this link. I had expectations of this highly anticipated movie, but I knew that no matter what I would absolutely love the big screen reunion of Mulder and Scully.
I became an X-Files believer quite by accident. It was a Sunday night, we had invited some college friends over for dinner. They had great concern about what time exactly we were eating dinner ~ a hidden agenda was highly suspect. After a little prodding we found out that the X-Files season 3 finale was on TV that night. At the time we had never watched the show. After our friends shared their enthusiasm for the X-Files we agreed to eat dinner early so that we could fully devote our undivided attention to the finale episode together. Needless to say, we were hooked with just one introduction to Mulder and Scully.
I remember going through XF withdrawals for a long time after the show ended. I missed the Mulder and Scully weekly banter, quirky Mulderisms, their incredibly deep soul connection with one another. The government conspiracies, UFO and alien chasing plots were entertaining, but the ones that most spoke to me were the plots where Mulder and Scully were searching their hearts for the truths in life. Journeying to those dark places to bring forth light.

The movie had a lot of great shout outs to the fans ~ pencils stuck in the ceiling, sunflower seeds, Scully's cross necklace and many more. I loved the fact that Mulder and Scully didn't have everything figured out yet ~ we found them still struggling with the truths, but doing it together.
This quote from the movie is what it's all about ~

What an incredible truth that is ~ there will always be the darkness, but it's our mission to shine the light. I think that Mulder is drawn to the dark places, because in the inkiness of night his light shines brighter ~ it brings his life force to life! Another famous quote comes to mind when I think of lighting up the darkness ~

Galadriel: I give you the light of EƤrendil, our most beloved star. May it be a light for you in dark places, when all other lights go out.

On a lighter note, the Skin-Man cameo was awesome ~ if only the Lone Gunman could have made an appearance ~ maybe in the next one! So for now, I will patiently wait for the movie to come out on DVD so I can watch the movie again and again.

X-Files I want to Believe (2008 Film Score)

“Mommy, I think God might be coming for me!”

The other night my eldest daughter, Hannah, woke up and stumbled downstairs and sat down in the middle of the kitchen. She had been asleep for about an hour already ~ she was shaking and out of sorts. She complained of a sore throat and had a belly ache. I berated her with questions, trying to figure out what was wrong and what kind of medication would get her on her way back up to bed.

I dampened a washcloth, put it on her head and escorted her upstairs. I tried to tuck her into bed but she was so distraught ~ tossing and turning. Finally I managed to convince her to take some Tylenol. Hannah is a super healthy kid. She doesn't have many experiences with fevers and chills, so when she doesn't feel 100% she completely freaks out. She was delirious with fear as I was trying to explain to her that she probably picked up a virus and her body was killing it with the fever. I tried to quell her fears ~ told her to relax and go to sleep and then she would feel better when she woke up.

The things she said while her little mind was trying to grasp what was happening to her were cracking me up ~
“Mommy, I am not as brave as people think I am!”
“I just don’t know how much longer I can take this. I am just a CHILD, Mommy!”
“Mommy, I think God might be coming for me!”

The next morning, Hannah felt back to1 00% and we had a good laugh as I repeated to her what she had said the night before. I am so thankful that she hasn't learned how to be a good patient ~ to surrender to the pain. I was thinking back to the day after my spinal detethering ~ hooked up to a morphine pump ~ breathing through the incredible pain as I turned over in bed. Without a doubt the most painful experience in my lifetime, so far, but not one day did I shed a tear. I was focused, surrendering to the pain ~ letting it swallow me whole. Deep breath ~ hang in ~ persevere ~ get through it. I know that the sun always rises after a long, dark night of hopelessness. I have to believe it with every cell in my body ~ it's the only thing that keeps me alive. I pray that my children NEVER get comfortable with pain ~ ever.

Tuesday, August 12, 2008

Dark Stranger

Theme - Mark Snow

Pain is Weakness Leaving Your Body - Nietzsche

PAIN has swallowed me like the whale that swallowed Jonah . This summer we have been pounded by low pressure fronts and pop up thunderstorms which add to the whole vertigo~pain in the neck/head factor. There have been no 'good days' for a while now. Thank goodness my surgery is on the horizon, although December feels so far away, I am hoping it will get here quickly. So if pain is weakness leaving the body then I should be feeling a whole lot stronger any time now, right?

There isn't a soul on the planet who isn't feeling some type of pain ~ emotional, physical or spiritual. We all deal with pain differently, but the question is, do we let it define us? For me, I still haven't figured out if learning, from a very young age, to grin and bear it was such a good thing. I think there has to be some kind of healthy balance of putting up with the pain and letting it consume you. For me, feeling pain reminds me that I am alive, my heart is still beating. This doesn't mean that I enjoy it, but a gentle reminder that I am human.

I watch X-Files reruns almost on a daily basis, shocker, I know! One episode from Season Four really stayed with me ~ I copied some quotes from the episode below:

Scully: In med school I learned that cancer arrives in the body unannounced. A dark stranger that takes up residence. Turning its new home against itself, this is the evil of cancer, that it starts as an invader but soon becomes one with the invaded, Forcing you to destroy it, but only at the risk of destroying yourself. It is sciences demon possession and my treatment sciences attempt at exorcism. Mulder I hope that in these terms you might know it and know me. And except this stranger so many recognise but so many cannot completely cast out and if the darkness should have swallowed me as you read this. You must never think there was the possibility of some secret intervention, something you might have done and though we have travelled far together this last distance must necessarily be travelled alone.

Scully: (Writing in her journal) I have not written to you in the past twenty four hours because the treatment has weakened my body. Mulder it’s difficult to explain to you the fear of facing an enemy which I can neither conquer nor escape.

In away, I identify with Scully's 'Dark Stranger'. Certainly an over zealous brain tail and cancer are not even in the same galaxy, but nevertheless, my brain tail is a part of me. In an attempt to make room for brain tail my body will feel great pain. With Chiari ~ there is no conquering or escape ~ not yet. I had a dream the other night that I shot a syringe of salt into my brain tail and just like that, it shriveled right up like a snail. Problem solved ~ I wish the cure for chiari were that simple.

Thursday, August 7, 2008

Hope and Perseverance

Since my muse seems to have high tailed it out of Dodge I am taking a stab at reviving a blog that I started a few months ago. Huh ~ in looking at the date that I created this blog posting it was 2/4/08. Doing the math in my head ~ I was in the hospital ~ probably still hooked up to a morphine pump when I found this picture to the left and thought that I might want to write about HOPE sometime in the near future.

I seem to be up to my eyeballs in HOPE right now ~

I hope I can deal with the vertigo until December 3rd.

I hope and pray that I don't have to have a fusion along with the decompression.

I hope I don't lose my mind waiting for brain surgery.

I hope I don't lose my personality.

I hope people don't treat me differently after I have my brain tail hovel renovated.

You get the picture ~ a whole lot of hoping ~ But what exactly does HOPE mean? Many things come to mind...

First ~ this is a shocker, I hear lyrics singing in my head:

"I hope you never lose your sense of wonder You get your fill to eat But
always keep that hunger May you never take one single breath for granted God
forbid love ever leave you empty handed I hope you still feel small When you
stand by the ocean Whenever one door closes, I hope one more opens Promise me
you'll give faith a fighting chance And when you get the choice to sit it out or
dance I hope you dance I hope you dance " ~ Lee Ann Womack

"I hope, for more love, more joy and laughter. I hope, we'll have more than
we'll ever need. I hope, we'll have more happy ever after. I hope, we can
all live more fearlessly. And we can lose all the pain and misery. I hope, I
hope" ~ The Dixie Chicks

Pippin: Is there any hope, Gandalf, for Frodo and Sam?

Gandalf: There never was much hope. Just a fool's hope.

For me ~ there's always hope ~ as long as I am breathing ~ there's hope. Just when I think I can't possibly hold on a second longer I realize that God is holding onto me and won't let me fall.

Just like the Casting Crowns lyrics "I'm not holding onto you ~ you are holding onto me." (I posted the song below). So with that said, I hope that some of my hope will spill over to some of you out there. Wherever you are in your journey ~ may you find hope in places where you thought all hope was lost.

Psalm 25:5 (Whole Chapter) Lead me by your truth and teach me, for you are the God who saves me. All day long I put my hope in you.