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Saturday, June 16, 2012

On a slope, looking for traction

I feel that I'm on a unique roller-coaster, one that provides a miniscule lift only to descend, always too rapidly, too obviously, too predictably, me without recourse  but to hang on, as my only option is to bail out, an option that I find helpless to execute. Descent seems naturally unnatural, close to inevitable while a climb provides only obfuscated footholds, intangible solutions and cloudy reality.

My speech continues to ride the last car of my roller-coaster, also descending. Nowadays, especially as I tire, intelligent conversation only exists when my counterpart is smart. My voice is thick, my articulation is  inarticulate and my tongue stumbles constantly. Referencing Flowers for Algernon- I talk like Marty at the beginning of the story. Before the ALS, I should have learned French, then nobody but Sarah would understand me. Come to think of it, neither would Sarah understand me since I would certainly cob up French as badly as English.

I find it increasingly difficult to present myself to others. Outside my obvious physical disabilities, I am now showing a bluff of mental deterioration. Most have no idea that ALS leaves the mind intact, in my opinion similar to stapling one's eyelids open in order to guarantee to see what's coming. Strangers feel sorry for me when I boast about the functions of my power chair. Another level of pity emerges when they perceive that ALS is taking my mind.

Communication is the key. I just can't provide the dexterity to place it in  the lock.

2 comments:

  1. Maybe it's a good thing that you will be getting your new eye camera thing for your computer. Hopefully that will be a backup way to communicate in the future.

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  2. i am still here with you in spirit

    ReplyDelete