I fell for the first time a few weeks ago. Not literally the first time of course. We've all fallen many times in our lives. And my high center of gravity and big feet haven't helped much in that regard. But it was the first time I've fallen since being diagnosed with ALS where I simply couldn't explain it away as clumsiness or fatigue. I was just walking along, my left foot caught on the ground, and I stumbled forward, covering about 15 feet of floor trying to catch my balance. But to no avail. My coordination and muscle strength simply aren't what they used to be, and I hit the tile floor, sprawled out, on the right side of my chest. All in all it wasn't that bad of a spill. A few bruised ribs, a torqued neck, and a sore hand. Not too many people even saw it happen, and I was by myself, so no awkward explanation was needed. Although I was a little hurt by those who did notice, and did nothing but stare.
Last fall, a friend of mine with ALS sent me some pictures of the results of his own falling, heeding me to "be careful." I hope to avoid needing stitches as he did. But hard as it was to see his wounds and know that a similar fate was likely in store for me, it helped me get used to the idea before it actually happened. And knowing that I wouldn't be the only one to fall helped as well. I've thought about it often, wondering what the moment would be like. How and where it would happen, would I be badly hurt or embarrassed. So much so that the future event started to take on a weight of its own, like an ALS milestone just waiting to be checked off the list. A small part of me started to want it to happen, just to get it over with, so I could stop worrying about it. A typical reaction to my OCD. As it was happening, I had a very conscious thought running through my head: "This is it Scott. Your falling has begun." And silly me, just a few days before I had been telling Kirsten, "Well, at least I haven't fallen yet." I can just picture one of the Fates hearing me, sighing, and penciling me in on their calendar. Yet another appointment to serve up a heaping dose of reality to a mere mortal.
After the initial shock wore off, and I realized my arms and legs still worked, I got up, with no real difficulty. Maybe this falling thing wasn't so bad after all. But then it hit me: What if I had been carrying my daughter?
I lost it. In a haze, with tears in my eyes, I made my way to the car. I got in and just sat there, terrified with a mental image of the unthinkable. My God, would I ever be able to walk around with Eva again? I simply couldn't live with myself if something were to happen to her. Like any parent, I'm constantly on guard for anything that could harm my little girl. But here I sat, with the horrible awareness that I now have to protect her from myself. I don't think I've ever felt worse in my life than at that very moment.
But after I calmed down a bit, and over the next few days, I started to accept the idea that it was, after all, just one fall. Like all the other times in my life, I got back up, dusted myself off, and moved on. As most people do when they walk, I simply wasn't paying any attention. I still took for granted that I was a mobile human being. I just tripped. A bit of klutziness that couldn't be so easily recovered from as in the past. I just needed to be more careful, more aware, especially when carrying precious cargo.
Coincidentally, or perhaps fatefully as I prefer to imagine, I've been in the middle of reading a book titled Learning to Fall, written by a man who was diagnosed with ALS in 1993 at 35 years of age. His name is Philip Simmons, and the book is wonderful. I highly recommend it for anyone. You don't have to have ALS, much less know someone who does, to appreciate what he's talking about. And while he addresses the literal, physical act of falling and what it means to him, the book is really about the metaphorical meaning of learning to fall. How essentially, because we are mortal human beings, at least in the sense of our bodies, we are all learning to fall throughout our entire lives. I leave it to some of his own words to describe it best:
"We fall on our faces, we fall for a joke, we fall for someone, we fall in love. In each of these falls, what do we fall away from? We fall from ego, we fall from our carefully constructed identities, our reputations, our precious selves. We fall from ambition, we fall from grasping, we fall, at least temporarily, from reason. And what do we fall into? We fall into passion, into terror, into unreasoning joy. We fall into humility, into compassion, into emptiness, into oneness with forces larger than ourselves, into oneness with others whom we realize are likewise falling. We fall, at last, into the presence of the sacred, into godliness, into mystery, into our better, diviner natures."
Some of you might read that passage and think Philip to be a bit 'out there.' Another 'space cadet' who spends his time sitting around chanting and listening to Enya. And while there is certainly nothing wrong with that, I've found that as I read his book, I've come to believe Philip is very much a realist. A realist with an open mind, as I like to think of myself. And another way of looking at what he's saying is that learning to fall is simply learning to deal with uncertainty, with death, with all the things that are mysterious and unknown, all of which ultimately make us brothers and sisters in this less than perfect existence we call life. I've certainly come to think of those with ALS, including their families, as part of my own family. And that's saying quite a lot, as we're a very diverse group of people. But we have all been forced to deal with our own falling, and while some of us might not be ready to let go quite yet, we're finding that letting go is what ultimately frees us and brings us closer together at the same time.
In some ways, I think it's a bit like how many people experience high school. In school, everybody is in the process of developing themselves, of trying to find their place in the world, wrapped up in their own problems, their own ego. And in doing so, they wrap themselves up in cliques, they tease others who are different, and they generally act like the world revolves around only them. But after graduating and venturing out into the real world, and learning that they really aren't all that different after all, they start to let go of their ego, to let go of that all-encompassing need to be popular, to be accepted. Obviously we don't let go of our egocentricity completely, and some refuse to do so at all. But at my 10-year class reunion, it was clear to me that most of us had let go of our high-school notions of coolness. Most of us had started to recognize that we don't have all the answers, that life wasn't all about us. We accepted each other on more universal terms, not limited to what we were wearing or our social status. We perhaps unconsciously recognized that all of us were falling.
Who knows, maybe I'm just falling off my rocker. This kind of thinking can start to feel overwhelming. But that's part of what I'm getting at. I've come to feel that the only path to truly appreciating life is through pain, suffering, and confusion, in addition to all the 'good' things life has to offer. Through being overwhelmed and learning to appreciate it as not just a part of life, but as a critical and unique part of life as a human being. The age old, yin-and-yang notion that you have to take the good with the bad, you can't have one without the other, so why not learn to appreciate them both.
Philip Simmons' own fall was cut short too soon. He died in 2002. I would very much have liked to talk to him about his journey, but his book will have to do. As for my immediate situation, I expect I'll fall more often as my illness progresses. And we'll need to not only child-proof our house, but Scott-proof it as well. Still, I'm not in too bad a shape. I went hiking recently while on vacation in Colorado. Didn't fall then. But the next time I do, I hope I'll remember to take it all in, experience it fully. And just get back up and move on. After all, it won't have been the first time. I've been falling all of my life. And it's no longer about how many times I fall. It's entirely about how many times I can summon the courage to get back up.