Monday, April 7, 2014

Freezing Up and Moving Forward

Have you ever felt frozen?
I don't mean like outside waiting on the local Christmas parade, drinking hot chocolate with numb nose, fingers and feet-
I mean-Frozen.
Frozen in a moment.
Still able to move, to act, to function-
But frozen inside.
When I was younger I had vivid dreams of Indian tribes with strange death rituals.  I have no idea why I had these dreams..I've never been a huge Indian buff, don't think I ever painted my face or did a rain dance...Anyway, in my dreams death was always the same...the soul stayed trapped inside the immobile body. Complete awareness of surroundings was present, yet no sound could be uttered or movement made. Trapped.  I remember wrestling myself awake from these dreams, for fear I was actually among the deceased indians. I remember forcing screams from my mouth that apparently only came out as a whimper. I was frozen.
And I was ALWAYS happily relieved to awaken into the world of living, breathing, moving, talking humans.
Later I was told some people have this same trance-like dream state. Some call them night terrors . 
I call them...CREEPY.

For the past few days I've had quite the opposite phenomena going on.
Perhaps these are day terrors.
Or life terrors?
Or Chiari/Arachnoid Cyst/I-can't-believe-I'm-having-another-surgery terrors.
I feel frozen.
But this time, I'm frozen inside.
I'm moving, talking, laughing, writing, smiling, crying, texting on the outside and completely paralytic on the inside.
Currently, I'm sitting on my bed with two calendars open, three notepads open with various to do lists in progress.  Call the vet to board the dogs, finish the taxes, finish my daughter's FAFSA, pack for Houston, call the hospital, make a hotel reservation, renew my nursing license..and this list goes on and on.
But I can't get going.  I do one thing..then I sit and stare.
Then I go look in the mirror and mouth to myself.. "SNAP OUT OF IT"
I go back, I look at the list..the one item I accomplished isn't even on the blasted write it down, then mark it off (you know you do the same don't judge me).
Then-I read over the list and look for the most appealing task. 
And     my    mind     goes      completely         blank.

Why am I telling you this?
Here's the part where I remind you that you chose to read my blog...and I make no apologies for how I choose to process my life these days.
My best guess on how to make any progress this week is to just spit out whatever I am feeling so I can move on.
So in an effort to somewhat sanely "snap out of it"..I'm going to to take thirty seconds to type/ramble the uncontrollable stream of thoughts going through my pressurized brain:

What if I don't wake up from surgery? What if I do wake up? What if this doesn't work? What if it does work? The dogs need a bath. Who will pick up the dogs? What if I can't work again for six months? We are out of blueberries. What if my business doesn't grow? I've got to finish the taxes. I hate taxes. I hate being alone in Dallas with no close friends. Do I have any close friends? if so, where are they? They are going to cut my hair again. At the end of the day does anyone else really care? Do I care if they care? Am I a bad person? Am I crazy? Why is Bob vacuuming? How can he vacuum while I'm dying inside? Putting this hair clip in was a huge mistake. Why are we out of blueberries?
Okay-time's up.

Actually I feel better, sharper..not as fuzzy and abstract. I owe a debt of thanks to the writing workshop I attended in Petaluma, CA this January that told me about that exercise. Can't believe I didn't think of using it before.  I just created what Marie Forleo calls "mental white space".  It's lovely here in peaceville. 

Now I can get down to the real business of the day.

Okay. Nine days and counting.

If you are confused by the NINE days, don't think the stress has affected my mathematical skills.  Surgery has been moved up a day to April 16th. 
Yes- for those of you that know me pretty well.
For the love of buttercream icing! Could this become any more tragic?!

I must admit when the nurse called and changed the date. I felt this ominous dread come over me.  I've shaken that off and am looking at it now as the past 45 years end that day and the next 45 begin.  The first 45 were always hindered by my limited brain function..just imagine what I can do with the next 45..with my brain firing freely.  Watch out world! Here I come!

(aren't you loving the way my attitude has shifted with all of this extra mental white space..)

Now a little recap of our weekend.  We attended the 1st ever ASAP (American Syringomyelia and Chiari Alliance Project) DFW support group meeting..which I co-hosted with my new friend, Simone.  We had a great turn out. How nice to meet others who deal with the same issues as I! We had a great time meeting these sweet people, hearing their stories, swapping doctor info, medication info, treatments, etc.  Each of us brought something unique to the table, however, we all shared the same Chiari thread.  I came home from the meeting with the worse headache in weeks, climbed into bed and was actually in bed for about 14 hours.  When I woke up the next morning-I was ashamed of being so pathetic.  Who stays in bed for 14 hours with a headache?  Then we packed up our things and went down to Waco for lunch with friends, to check on our house and to see our sweet grandson. 

Sometime during the drive, Bob and I reflected on the ASAP meeting.  I made a stark realization.  I was the only Chiari kid there that doesn't take scheduled medication.  THE ONLY ONE!  I take PRN (that's nurse for: as needed) pain meds and muscle relaxers-but that is IT! I take a few supplements that I now believe are the reason I don't take regularly scheduled medications. I take D3, B-12, Juice Plus and Protandim. I rarely mention these supplements, mainly because I don't want to sound salesy...because this blog is not about my business or my income..but I believe these are key factors in how my cells are functioning. I feel like I'm hoarding this knowledge and that I should be helping people more and worrying about sounding salesy or preachy less.  So there it is....I like to take the natural course of action whenever possible.  I wish there were a natural choice for hydrocodone..because taking white willow bark just doesn't do the trick.

At the core of who I am-I just want to help others.  I do write this blog for myself-but I share it with you FOR you. I share it because people tell me it helps them personally, it helps them relate to their spouse or their children. I keep writing because I have to have a voice. I want you to have a voice. I don't want to be alone in this crazy fight within.  Those of you that comment and email  keep me are invaluable to me.

For many years, I was voiceless. I was ashamed of my health. I was told what a burden my health (mainly health expenses) was to others. I was called lazy and stupid.  I know that inside...I'm not lazy. I'm not stupid.  I know that it's okay to be frozen for a little while, to whine a bit and be afraid. I also know that it takes strength to say scary things out loud and to move forward even if what lies ahead is unfathomable.  

So I'll keep rambling, writing, freezing, making mental white space and moving forward.

Final thoughts for the morning from Season 5 of Grey's Anatomy for my dark and twisty friends--

"If there's a crisis, you don't freeze, you move forward. You get the rest of us to move forward. Because you've seen worse. You've survived worse, and you know we'll survive too. You say you're all dark and twisty. It's not a flaw, it's a strength. It makes you who you are."

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  1. It was so good to read this! I've also got CM with an arachnoid cyst and also just co-hosted our first ASAP support group meeting here in South Louisiana. Unfortunately, we only had one person show up, but hey, that's one person we helped!

  2. Buttercream icing! We'll make a cake for your birthday for our next meeting. Thank you for sharing your feelings. You have a local support group now, so don't feel alone. Your feelings are honest perspectives only Chiarians understand. Keep up the good work. Even preparing for surgery, you are concerned about helping others. Daily prayers for you & greetings to Bob!

  3. Hi Kurt! SO sorry for the late reply..Please keep up the support group meetings..that one person was the one that really needed it! We have family in Rayne, LA..are you near there?
    Thanks for letting me know there is another odd ball out there with CM/ there are 3 of us that I know of!

  4. Vonda- Hope to see you tomorrow at our meeting..thank you for all of the encouragement over the past few weeks!