Tuesday, October 8, 2013

First Step Name and Know Your Fear

I tried to find just the right gargoyle to give my fear a quantifiable face. This one was too cartoony and that one was too daemonic. Then I tried clip art images of fear, but they seemed staged and simplistic. Names for my fear all fell flat. This wasn't something I could have tea with or arm wrestle out the door. Then I tried on some of the truths, pack it in a suitcase and leave it at the door, or get to the feeling behind the fear, or drag the fear into the light, face it, and be victorious over it. Nothing worked. Fear seems to hover and slither over me like a shadowy beast. 
What is this fear and why doesn't it leave me alone? Finally, I have come to realize the difference. This isn't fear based in the echo of childhood trauma. Or fear of an unknown future. Or fear of noises in the dark. This is fear based in reality: in choking, in brain fog, in feeling the threads bursting at the seams. MS is affecting the core of my being and I am afraid.
Several times a day I have these 'fugue' states that are part of Paroxysmal Syndrome. An MS cluster of symptoms that includes non-epileptic seizures, stabbing nerve pain, deep spasms, choking, and loss of temperature control. These fugue states can range from a few moments of sleepiness to up to 20 minutes of unresponsiveness where I am locked in my body, can hear but can't move. I come to shaken and disoriented. The fear is: what if I don't come out of it; what if I stay locked in my body forever.
The choking is part of the Laryngeal Spasm, but increased. Now if I take too large of a bite or chew too long the food builds up and seems to catch on the back of my tongue and I can't swallow. Also, when I lay in certain positions or turn my head too far to the right, my larnyx closes off and the choking starts. The fear is: this clot of food is cutting off my throat, I can't breath, I can't swallow, help me, help me.
My brain feels like a metal band is encircling it and slowly tightening around it. I have spasticity in my neck that can force my head down and back by about two inches. The nerve pain in my extremities is insane. And so are the charlie horses and spasticity. The fear is: how much worse can this get and can I and will I survive whatever is next

5 comments:

Mary said...

I love you
XOXO
Mom

Anonymous said...

This may sound odd, but thank you for describing
how it must feel to be in your shoes. Your writing
is so descriptive and it helps me understand
a glimpse of what you must be going through. You
mean so much to me that I somehow appreciate
your helping me understand.

I sent you an Amazon card. Thanks again for giving me
tangible ways to support you.
Love you always, Cynthia

Kim @ Stuff could... said...

You write how it feels to deal with the worst of the MS (what is worse?)...I am afraid of those things happening to me too. I wonder if everyone has those fears when it comes to breathing, and will it last?
Keep writing about the life you have now.

Cameron Von St James said...

Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

Janine said...

Cameron: Send me your email and I will be happy to have a have a conversation. Janine