As the number of days of my living with (a diagnosed case of) ALS eclipses the 1300 mark, I find myself in the perpetual state of being both amused and annoyed by what this P.O.S. disease has done to my body. While a majority of my symptoms — like the inability to walk, talk, eat, and even move — are straight out of the motor neuron disease handbook, these ones that I experience on a daily basis are not in any Idiot’s Guide to Terminal Illnesses that I’ve ever seen.
I’m pretty sure I have the world’s most sensitive legs. Basically, anything below my waist seems to operate on a hair trigger. If someone casually pats my thigh, my knee and foot react accordingly. To the moon, Alice! Good luck to whoever gets the happy task of washing my feet each morning.
Every evening at approximately eight o’clock the toes on my right foot get unbelievably and unbearably itchy. It’s uncanny how it only happens at that particular time. The itch subsides once Fehmeen scratches it for a minute, thank goodness (for Fehmeen).
The middle finger of my left hand has a propensity to curl up like a seasoned curly fry if left to its own devices. Only the left hand. I am constantly asking people to straighten it out for me. I suppose that this symptom is karmic payback for all those one fingered peace signs I used to flip in my capricious youth.
Lately I have been having some very specific food cravings for things I haven’t eaten in years. A baloney sandwich on white bread. A slice of vegetarian pizza from Round Table. Two Giants Dogs from AT & T Park. Is there any way we can get this stuff in Boost (Ensure) form?
My yawns have backed off a little from the full body dry heaves they used to be. On second thought, maybe they are still pretty crazy but I’ve just gotten accustomed to them. Whatever the case, once I experience a yawn, my lips and eyes are due to be wiped, my fingers should be unfurled, and my mouth could use a good suctioning.
The funny thing about sneezing when you are a quadriplegic like me is that you are essentially a passenger on a roller coaster of unknown duration. It could be once or twice around the track but then again it could go on and on and on for almost ten minutes before it lets up. In those extreme cases, a fresh box of tissues and a whole lot of patience is advised. In the end, my mouth will be requiring a good suctioning.
I get so much suctioning to alleviate the saliva buildup in my pie hole that I am seriously considering changing my middle name from John to DeVilbiss after the company that makes the machine I use.
Once I finish eye gazing for the night, I typically lean back in my recliner with the BiPap strapped onto my face to watch a little tv. The only problem is that the minute my head goes back, my eyelids begin to shut very much like those dolls whose eyes close when you put them in a supine position. If I request to be placed in a non-reclining posture, it’s only about five minutes to suction time. And nobody is overly jazzed about that. So I usually choose to just listen to our favorite shows.
Last on my list is I wasn’t exactly prepared for the high number of people who have seen me in all my glory these past three plus years. By my count, there has been at least twelve people who have seen my birthday suit so far. I guess I’ve overcome my shyness.
The Adventures of ALS Boy 