Thursday, 20 February 2014
It always begins with that now. The millisecond between thought and speech. The break in programming. For a moment the thought seems clear. Then it slowly dissipates. Delicate filaments of mist trailing out before me. A corner of my mind grasping desperately as if I actually have a chance to hold onto the wisps of my mind. Even as they melt through my fingers, and dissolve completely. Before even that small moment of awareness and coherence fade.
Words are slowed and jumbled. Chewed up and spat out. No. Not spat out. There is no force left. The mush of sound falls from my lips. Lips, tongue and cheeks completely impotent. Even my teeth feel set apart. Out of reach. Immobile and uncoordinated. Separate, yet bound in concrete to my mouth. Impeding the words and sound.
A signpost to all and sundry. The herald of collapse.
Gestures fail as weakness infuses every part of my body. Force of will means nothing when force is replaced with nothingness. A vacuum where no one can hear me scream. More sounds fall from my lips, my fingers point ineffectually, my fabric arms are unable to accompany them in their directions.
Single words. Water. Salt. Sit. Lie. Down. Down. Down. The effort required even for simple communication is exhausting. Each word requires me to collect the tiny crumbs of energy scattered throughout my body. To mould them together. To knead them and weave them. Until enough form is finally created and the single, slurred word can be uttered.
I am rushing. Panic barely stifled. But I am treading water. On the road to nowhere.
The trail of a shaken sparkler obscures the world in front of me.
Darkness avoided. Just. Sitting, slumped on the kitchen floor. Staring at a small wilted leaf of baby spinach that has escaped notice until we are almost eye-to-eye. Shaking. Shaking so hard that later when it is all over, my muscles hurt from the exertion. Water dribbles as I try to scull it down. The salt pot sits in my lap, lid resting on my thigh. I dip my finger in the water and then in the salt and slowly bring it to my mouth. The same small movement repeated over and over. All I can think of is sitting as a child repeating the same movement with the sherbet of a Wizz Fizz. Maybe if I squint my mind I can pretend it is the sizzle of the sherbet and not the burn of the salt on my tongue. Maybe I can see the yellow and orange packet hidden in the stereogram before me if I turn my head just right.
Speech slowly returns. More syllables. More words. More clarity. I reluctantly accept help to rise. Accept help. Two words that grate.
I wait and I push. It won't defeat me. I won't defeat me.
And yet...I stand. And the slurring starts and the cycle begins anew.
All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx
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Your descriptive powers are incredible. This sounds like a horrifying experience. I wish that doctors and researchers would read this and work double time to finding treatments and cures… People shouldn't have to live this way.ReplyDelete
Thanks Cassandra. It's become more frequent unfortunately and I know I'm not alone. I wish there would be more research and more funding for research (part of why I started my own fundraising program for local research). You're right no one should have to live like this :(Delete
These were the words I was looking for. I am sending this to my family n hopes they will see me through your words. Thanks so much!!!! Sue
Argh Sue. So sorry this has just reminded me that I needed to email you. Again I really apologise. Memory like a sieve these days. I hope these words can help. xxDelete
love your posts. So many days you have provided me some insight and strength. Thank youReplyDelete