I’ve been lamenting the loss of freedom that comes with an ALS diagnosis for over a decade. Since I first began to recognize losses in my bodily capabilities. That’s what freedom has come to mean to me: the physical ability to do whatever I desire.
At first it was athletics; diminishments became inabilities over time. I stood by helpless as the questions piled up in my head. Running and skiing and basketball and hiking and golf and everything else. I remember struggling to climb over the boards and almost falling on a slapshot the last time I played ice hockey; I remember faceplanting in the wet, heavy snow of a sunny spring ski day, high up on the mountain, my run just beginning; and I remember choosing to stay home when my friends were out having fun.
I didn’t recognize those losses as my new normal; I didn’t know I would never again feel so free. But in an instant, everything changed. Once labeled, I had to at least entertain the idea that there was no going back.
The most important theme of my memoir involves my continued attempts to maintain my independence (freedom). I’ve been surprised at the realization that other pALS (people with ALS, for the uninitiated) may have different priorities. But I think that’s how I saw myself, more than anything. An independent and capable man (more likely, “guy,” with questionable maturity). I think that’s how all men want to see themselves, and certainly how they measure their value. That’s what we are taught; we’re not supposed to “need”.
Fast forward to four years ago―past countless losses in my everyday life, from a career to a would-be marriage, and from negotiating a set of stairs to lifting a shirt over my head―and it seemed like it was all coming at once. My house, my car and driver’s license, my ability to make my own meals, choose the music on the stereo, and exist in the privacy of my own walls. All of it gone in an instant, the result of yet another fall. Thirty-four years old and moving back in with my parents. Maybe it’s a bit dramatic to say it felt like surrendering to a prison sentence (or the enemy). But it was a surrender. To reality. I couldn’t hold it off anymore.
And now I’m beginning to see another army of realities gaining ground. I recognize, to my fellow pALS and those in the know, just to still be alive is almost a miracle. But in addition to that absolutist measuring stick (I’d call it a low bar, but that seems to diminish its importance, and I am, in fact, grateful to be alive), there are so many things I can still do on my own after all of these years.
It's a sunny Saturday a little after noon. My parents went out (on errands, Costco? I don’t know where) at least an hour ago. Mom left me a plate of food, filled my water, and made sure my phone was both charged and within reach. She often expresses her worries before they go; “be careful,” she says in an unmistakable motherly tone. Though we’ve done this dance a hundred times and a one-word acknowledgment is usually all I can muster, occasionally I elaborate to try to alleviate her predictable anxiety. “All I’m gonna do is sit here and go to the bathroom and maybe take a nap,” I tell her. (I haven’t choked on any food in a very long time; I seem to have retrained my muscles to operate on less juice. If I believed in curses or tempting fate, I, of course, wouldn’t write that.)
My point is this: I’m still capable of the things implicit in being left alone for a few hours. I can hold and use a fork and spoon and get food to my mouth; drink from a glass (usually but not necessarily with a straw); stand up out of my wooden (with a seat cushion!) desk chair and get myself into my behemoth wheelchair a few feet away; use the bathroom including getting onto and up from the toilet if needed; stand at the sink and brush my teeth after lunch; and get into and out of bed. In the pALS heightened, tiny little world, these are big wins. I still stand in the shower, though the end is near on that one.
I’ve been (in some way) preparing for far too long. The BiPAP machine is ready to go when I can no longer breathe laying down; the cough assist is waiting to suck the mucus from my throat when it chokes me; I surrendered to the use of a hospital bed (it was horrible; worst mattress I’ve ever slept on. Inmates must have better beds.) because that was the next step, but soon replaced it with an adjustable base for my Tempur-Pedic; I even consider buying a shower chair to be on my to-do list. But, of course, there are so many more.
And that’s what I’m trying to say: there will come a time in the not-too-distant future when I’ll have to face another round of surrenders. When these personal freedoms even I take for granted will be lost forever. I’m not looking forward to those days, but I’ll find a way to adapt and go on. When I must, and no sooner.