This is my first time having ALS.
Consequently, it has been challenging to answer many of the questions put to me routinely. Quite often, I have no language to describe my physical sensations and emotions, much less the inward journey of my soul.
When children are too young to have precise words to describe difficult emotions or bodily sensations, we sometimes ask them to describe the feeling as a color, or as an animal noise. The sad feeling of grief becomes ghost gray, or dark purple. The rage of abandonment is a roaring tiger.
As an experiment, I am assigning colors and music to opaque questions and their poorly formed responses. Frankly, it seems better than remaining mute and perplexed.
But first a word about Dr. Google.
If you suspect that you might have the signs and symptoms of ALS, I do not recommend consulting Dr. Google. Check with a real doctor, even, and perhaps especially, if you ARE a real doctor.
Consulting Dr. Google about ALS leads to harsh statements about impending disability, and a shortened lifespan. If you are scientifically, or medically minded you will be disappointed to learn that the disease mechanisms and treatment options for ALS are slim and not well-described. (Color: maroon; Music: anything in the key of B minor)
My initial doctor’s appointments were aimed at uncovering the source of my symptoms (constellation of symptoms):
- muscle twitching (fasciculations),
- jumpy legs and arms (hyperreflexia),
- shrinking arm muscles (muscle wasting),
- weakness in my left hand when writing or buttoning a shirt (progressive weakness), and
- uncoordinated, slow finger movements (Dysdiadokinesia)
If you consult Dr. Google on 3 of the above 5 symptoms you will learn about ALS. So, you ask, why did you bother to go to all those doctor’s appointments? Uhhh, we like doctors? We trust them to help us.? (C major; Kelly Green)
In general, people ask questions about ALS as gently as they can. I appreciate the inquiry and their sincere interest. I really do.
“How are you feeling?”, they say. (C minor and slate blue on some days, E flat major, and chartreuse on others)
“Say more about what you call buzzing, is it more like tingling?” (hibiscus red, F major, definitely F major, or maybe gargoyle grey and a tenor sax wailing the blues)
“How was your time with the kids out West?” (yellow, like a ripe lemon just off the tree; and A major is about right, maybe with a modulation to D major)
Isn’t this fun?
As for my soul, and it’s language, color, or music…
Actually, I’m OK with a silence of the soul for now. It’s not quite intermission. It’s more than a half-note rest. Maybe I’m in the pause between symphony movements. Maybe it’s the color of dawn in June. See what I mean?
I’ll need time and emersion for fluency in the language of the soul.
But, honestly, how can I keep from singing? (G major; Butterscotch)