If you see me in person, be sure to understand that I cloak many of my symptoms by moving little and drawing aside your attention with clever speak. I find it important to present myself in the best light possible so as to relieve others' stress. Most people tell me I look great (compared to their imaginative dread), and some actually tell me I look better than they expected. Along the line I continue to recall Steve McQueen in "Papillon" as he sticks his head out of his cell in a French prison and asks the adjacent prisoner "how do I look?" to which the other prisoner, seeing him, dirty and emaciated, replies "you look good". All things are relative.
Daily ritual.
I wake up, unable to roll to my left in order to check the time on the clock, instead relying on the level of light to inform me that day has broken. My efforts to swing my legs to the floor, giving me the impetus to push to a sitting position provides a signal to Amy, who helps me rise. She gets up, rounds the bed and grabs my robe, knowing I will visit the bathroom with profound urgency. She slips the robe first over my left shoulder, helping to ease my arm into the sleeve (I need to mention that mornings I find my left arm to be partially paralyzed, my hand clenched so tightly that my fingernails are dug into my palm and that both must be manually pulled loose in order to function, none painful yet none too pleasant), then pulling it around so I can slip my right arm through the other sleeve. Now, with her help, I try and stand up. As I rise, every morning and more, my body racks itself with uncontrolled tension as every muscle in my body locks down. I shake, I vibrate and shutter as I hope not to seize up a calf or hamstring. Immediately afterword the ALS fasciculations amp up as if on adrenaline; worms of all sizes bumping inside my flesh trying to escape. (Maybe a snip here and a cut there would allow them to leave- I jest. Oh, if it were that simple). Meanwhile, Amy ties my robe, positions my walker in front of me and moves ahead to open doors and lift the lid. I follow, ever so slowly lest I get too anxious and tumble in a tinkle sprayed heap. To date I have yet to fail in my efforts to relieve myself in the morning- though barely.
This is the extent of my daily ritual thus far. Look for a continuation from the point where I successfully exit the bathroom. Probably later today. Now I must spruce up for my physical therapist, who will be here in 20 minutes. Yee ha. I sure wish it was rehabilitative.
Daily ritual.
I wake up, unable to roll to my left in order to check the time on the clock, instead relying on the level of light to inform me that day has broken. My efforts to swing my legs to the floor, giving me the impetus to push to a sitting position provides a signal to Amy, who helps me rise. She gets up, rounds the bed and grabs my robe, knowing I will visit the bathroom with profound urgency. She slips the robe first over my left shoulder, helping to ease my arm into the sleeve (I need to mention that mornings I find my left arm to be partially paralyzed, my hand clenched so tightly that my fingernails are dug into my palm and that both must be manually pulled loose in order to function, none painful yet none too pleasant), then pulling it around so I can slip my right arm through the other sleeve. Now, with her help, I try and stand up. As I rise, every morning and more, my body racks itself with uncontrolled tension as every muscle in my body locks down. I shake, I vibrate and shutter as I hope not to seize up a calf or hamstring. Immediately afterword the ALS fasciculations amp up as if on adrenaline; worms of all sizes bumping inside my flesh trying to escape. (Maybe a snip here and a cut there would allow them to leave- I jest. Oh, if it were that simple). Meanwhile, Amy ties my robe, positions my walker in front of me and moves ahead to open doors and lift the lid. I follow, ever so slowly lest I get too anxious and tumble in a tinkle sprayed heap. To date I have yet to fail in my efforts to relieve myself in the morning- though barely.
This is the extent of my daily ritual thus far. Look for a continuation from the point where I successfully exit the bathroom. Probably later today. Now I must spruce up for my physical therapist, who will be here in 20 minutes. Yee ha. I sure wish it was rehabilitative.
You know you're a great writer when even your depressing posts make people smile ;).
ReplyDeleteI also wish I had some type of healing "Quigong" Art. maybe look someone up in Texas. I sit and read this and can only wonder at your amazing ability to turn shit into sugar. even when 'you' are 'you',now or before,you are a better man than anyone I have had the privilege to know.
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