Remember that old commercial, where the poor lady cried out, “Help, I’ve fallen and I can’t get up”?
It was a meme before memes were a thing. You laughed at the commercial. I laughed at the commercial. We all laughed at the commercial. We probably shouldn’t have, but we did. Everyone mocked the company. It was funny.
Until it’s not.
I was warned early on that one of the significant issues with ALS was that the disconnect between my brain and nerves and muscles would cause my muscles to atrophy and die. My failing system would render me perpetually out of balance and I’d eventually lose my ability to even walk at all. Bottom line, as this disease progressed, my mind would write checks that my body simply would not be able to cash. (You young people, ask an older person what a check is). 🙂
I heard the experts as they warned me, I even listened to them. But I couldn’t wrap my arms around that concept. That was not my modus operandi. Whether I was running the bases or walking on the roof, whether I was on a stair climb or a pub crawl, I was always able to be in motion. It was easy, fluid, unencumbered motion.
Until it’s not.
The first minor glimpse into my future was actually somewhat funny. I had moved my office downstairs (see, I listened, I knew stairs would eventually be an issue), and as I bent over to move a pile of file folders, my legs gave out and I plopped straight down on my ass. I laughed. Then as I tried to hop up from the floor, I realized that my body was revolting against the directives from my brain… I couldn’t get off the floor without assistance. Damn.
To be overly candid, it wasn’t the first time I needed help up from the floor. But it *was* the first time I needed such help when neither Yager nor Tequila was involved. 🙂 So, yes, this time was different. And it seared this newfound, albeit quite frustrating, understanding of my situation into the back of my mind.
A few weeks later, I’m rummaging through the garage looking for something. Like everyone’s garage, ours is 600 square feet of space packed with 1,200 square feet of stuff (and none of it cars! why?). The Flying Wallenda’s themselves would struggle to walk the tightrope of space between piles of used sporting equipment, the vast collection of tools, and the multiple unmarked boxes that everyone is deathly afraid to actually open.
Of course, in my condition, I really have no right to be out there – except for the fact that I am stubborn as a mule and guess I’m determined to be on my ass. And so it was to be.
This one was a doozy. I wish I had been able to video it… could have made a fortune. It happened so fast, but it seemed like it all went down (literally!) in slow motion. The perfect storm… A failing leg that wouldn’t move as intended, a cluttered landscape, a rather large dude, and the concrete floor – I went down, but not without a fight, as I pulled down stacked boxes, some yard tools, and a painting easel on top of me as I crashed to the floor. (hey Melanie, WTH is a painting easel doing in my garage?!)
As I lay there – bloody knee, bump on the head, and a seriously bruised ego – I had time to reflect on my life. Of note, I had all this time to reflect because I hadn’t told anyone I was going out to the garage. So it would be a while until anyone found me… (yes, I was significantly chided for the errors of my ways, and I now know better). 🙂
The crazy thing about ALS though is that I know it’s never going to get better.
Over the years, I’ve broken my ankle like three times. Through all the casts and crutches, I knew that I’d eventually be up and on my way again soon enough. Pulled hammy? Busted toe? Been there, done that, same outcome – all better and back at it.
But with ALS? Sadly, not so much.
This disease has progressed to the point that I’m now as light on my feet as a baby rhino, with all the balance and coordination of a drunken sailor on leave. In this condition, you need to scrutinize every move you make… (… every step you take…) … you just sang “I’ll be watching you” didn’t you? It’s ok, me too. 🙂
Even then, the Sting from an undesirable fall is always only a dragging left foot away. (Sting? see what I did there?) 🙂 Ok. Moving on…
In my most recent interaction with the failed muscle system and the floor, I must have been tripped up by the hidden hazard of a single long strand of carpet. Before I could say “look Ma, I’m flying” I had a real-life version of a face plant. Fortunately, the first thing that hit the ground was my forehead. I’m not likely to dent this hard head, but rug burn? Yeah, that’s a thing that admittedly looks a little funny on the forehead. Seriously though, had it been concrete instead of carpet, that might have been an issue.
Here’s the deal. Sadly, I’m very aware that I am rapidly progressing toward my final days of walking. That stark realization is significantly more painful than any of the falls (so far, at least).
And as I’ve said before, the frustration of knowing I can do nothing about the ultimate arrival of this major life change is one of the more depressing things I’ve ever encountered. The crazy part is that I know this disease is actually going to get much worse, so I use that knowledge to try and enjoy how “good” things are now. Good, of course, being a quite relative term. Wacky right? Maybe I’m seeing the effects of one of those falls. 🙂
Ultimately, I need to deal with it. Somehow. But saying it is so much easier than doing it. Fortunately, I’ve embraced a philosophy that keeps me (somewhat) sane.
I can get through today.
Long before I went public about my diagnosis, I asked a friend with knowledge of this disease how they handled the havoc it would wreak in their lives. She told me they focused on simply getting through that moment, that day.
In its simplicity, her guidance cleared my mind, lifted my spirit, and renewed my purpose.
While I may be all too aware of the devastating path of immense challenges that await me in the days and weeks ahead, I took her advice to heart. I’ll never be able to thank her enough for this simple but incredibly impactful gift – one of perspective.
Now, I know I can get through today.
