In the event that this is your virgin foray into the world that is my blog, be warned and accept my suggestion that you first read my earlier posts when ALS was a mere annoyance to be creatively dealt with, rather than now, as I battle a full blown disease supporting its reputation as a monster among monsters, rendering me this day nearly a quadriplegic. In the event that you are a constant reader, I apologize in advance, not for what I say, but for why it is necessary for me to vomit the bad stuff that is consuming me. If you want to keep your shoes clean, simply step back. If you stay close, and the mire is too thick, hit delete and clean yourself off. If you can take the heat, I number you certainly among the brave, possibly among the foolish, more than likely to be caught in my mental monkey trap.
ALS may be the worst disease in existence. Before I was diagnosed, I might have chosen a dozen diseases more difficult to deal with: cancer, heart disease, AIDS........................all having their own trademark terrors. I can't really speak for them, but I am an expert on the effects of ALS- at least my version. My struggles are vulgar and unique and depressing every single second of my life. At this time I can assure you that God had no hand in my predicament. I am also certain that He plays no part in my survival- unless, of course, I am God or He is me, in which case, He/I is/am my only hope. I have had nothing but time to arrive at this observation. I have no use for literature designed to perpetuate antiquated ideals; I have no interest in divinity. I also refuse to succumb to the concepts of sin, guilt and judgment, hell and brimstone. If there is a universal energy in existence- and I'm counting on it- it is without form, consciousness or prejudice. In my opinion, my best bet is to refuse to believe in fate, to believe in the power of chance, placebo and personal faith, to grab at the finger holds of resistance and to keep my mental tendrils active in snaring the energy of the universe.
A day in the life-
Let's begin at night. At 6pm I take 4 pills and a capsule. Something to level my emotions, something to thin my blood and something to ease my spasms. As much as I abhor drugs in general, I find that now I don't cry while watching the evening news and my blood is sufficiently thin to prevent blood clots. The spasm med is, however, crap. The first version made me tired and gave me zits but did nothing to relax my spasming. The pill I got to replace the first did nothing at all, so the doctor advised to double the dosage. In my book zero plus zero is zero. Last night, the new dosage proved my math.
I am slowly losing my physical faculties. I cannot manage any of my own hygiene. I have no grip with my left hand and can only rarely raise it unassisted. My range of movement is so restricted that I cannot touch my face. My right is still useful enough to type my posts but its range is reduced now to about 16 inches. I lack the strength to squeeze my nose enough to blow. If either arm is tested, the pain is excruciating and lingering. I cannot balance well enough to take even one unassisted step. My big toes do not listen to me. In order to get me in bed, Amy must position a rotation device on the floor, I step on and she turns me, takes my pants down and helps me sit near the pillows. I recline as she lugs my legs around and plops them. I usually roll awkwardly, requiring her to pull me into a better angle. My bed is raised, head and foot. My anxiety subsides.
I need to blow through the rest of the night in order to prevent repetitive dreams tonight:
In bed, lights out, I usually begin on my left side, positioned entirely by Amy- it is impossible for me to scoot left or right. I sleep with my left arm up, right arm prone, my fingers inserted in the crack between mattresses in order to keep them straight. My legs are crossed and bent to prevent spasms. A pillow is nestled between my legs, another under my right armpit. An hour or two later, my left shoulder and collar bone are on fire from compression and my left hip is screaming. I can manage to roll onto my back for a short while only to have the compulsion to turn to my right side. I need to wake Amy for help, she gets up, I have to pee, she helps me with that, my hands are claws, fingernails digging into my palms, both arms are bent and paralyzed, she touches me, my entire body locks down in spasm, I shake uncontrollably, she pleads with me to relax, she uncurls my hands, an ease washes over me, she helps me to my right side. Two or three hours later, the cycle repeats itself. Mornings are the worst. After hours alternating crushing my shoulders, I am not only sore and paralyzed, but tired. I need to get out of bed so I can get some sleep.
Next- reduced respiration, swallowing problems, lead legs, swollen feet and ankles, speech abnormalities................................
