You lose strength. You lose dexterity. You lose capability. You lose independence. You lose privacy. You lose, one at a time, little pieces of yourself.
Most of these losses happen gradually, relatively slowly, letting you make changes and adjustments and retain function. You use aids, like fat-handled silverware and zipper pulls and Velcro shoes. You change how you do things: a simpler hairstyle, simpler clothing, painting in big broad strokes –with your left hand. You need a little more help than normal, and you gladly accept it. You carry on.
Until you can't. All of a sudden, it seems, the aids don't work, the changes are ineffective, and "a little more help" becomes a lot of help – all the time. All of a sudden, it seems, the hands that were stiff and awkward but, with new tools and processes, functional… are useless. All of a sudden, it seems, the legs that were weak and wobbly but, with orthotics, functional… are useless. All of a sudden, it seems, the voice that was becoming quieter and weaker but was still intelligible… is gone.
And more, and more, and more.
The one good thing – and were really reaching for a silver lining here – is that these "all-of-a-suddens" don't happen all at once, all over your body. Going away one part at a time is dreadful enough.
As I approach the one-year anniversary of my ALS diagnosis, I am dealing with both graduals and "suddens." My symptoms first appeared in my right hand, then spread up my right arm. At first I lost fine motor skills, will then gross skills, then the arm was, for all intents and purposes, gone. But I still had my left hand – until it started weakening and stiffening, along with the arm, until now they too have nearly lost functionality.
So the things that I could do while on vacation earlier this summer, just a couple of months ago, I can't do at all: no walking all around town or all through the park; no feeding myself; no dressing myself; no pulling up my own blankets. One day I could put on my own pants, then – hey presto! – I couldn't. One day I had enough strength to get an apple out of the refrigerator, then – poof! – I didn't. One day my hands and arms were mine, then… they weren't.
Now I face gradual losses in my legs. My right leg wants to buckle and collapse, my right foot wants to drag and threatens to trip me. With a brace-like orthotic, my foot is more stable, but overall strength is disappearing. And on top of that, my left leg has now decided to flag.
How long will they still work? How long can I still walk? When will gradual again change to sudden? I don't know.
And what part of me will be next to go? Don't know that either. I just know that something will.
Because ALS is a continuing series of losses.
And how damned depressing is that?
