How would I manage? The essential fear, at least for me. How would I manage if something happened to my left arm, for example? This possibility came to me in the middle of the night. My grip felt weaker. And wasn’t this the way it started at some point in the mid-1990s, the morning I crutched out to my car and found my right arm oddly weakened? Probably my briefcase gave it away. In those days, I could hold small bags, laundry, groceries, in the crook of my gripless right arm. True, the hand was out of neurological action. But the right biceps were still cranking along rather smartly. Until that morning when they weren’t. And four neurologists later, it was finally determined to send a surgeon into my neck for a bit of orthopedic search and destroy. Which took care of the bone spurs squeezing off my nerve supply, but too late. And now, more than one and a half decades later, it all seems too late. At 3 AM, my grip has gone in every sense of the word. The bone spurs are at it again, I just know, for it started like this before, more or less, and what comes next….
Jane does. She helps me sit up. I ask for an exercise band and begin pulling the thing with my left arm. Funny thing, but the arm is fine. The fear is not, of course, and after another hour in the dark I am still awake. Some chamomile pills push me over the sleeping edge, for after all, I am now on the right side of things neuromuscular. All is well, or as well as things can be. Though the question does remain. How would I manage?
I am getting older, and things are getting harder, and if the left arm doesn’t go, something else will. Perhaps nothing quite so vital, the arm supply being rather limited. Never mind. The fear is there. And for now, that is all I know. That it seems almost unthinkable, certainly unlivable, sustaining any more physical decline. If this is the fact of physically disabled life. The baseline is low. Further physical deterioration, inevitable with age, will have just that much more impact. How would I manage?
I would not manage alone, and this is the first thing to remember. In 1995 or so, with the loss of my right arm, what was left of it, I was recently divorced, seemingly more isolated. But things did not work out that way. My brother worked on some practical solutions to help me carry things around my apartment. My sister and niece came to visit just before my surgery. Guys in my Jewish men’s group offered help and support. Caroline, my British cousin, phoned occasionally to ask if any more bits had fallen off. In short, there was love and humor and connection, not to mention help, from all sides. And so one faces the darkness.
There is no schedule for darkness facing. Which is just as well, for there is no anticipating. Life does end, and before that body functions have a way of ending. Trouble with being severely disabled is that none of this is wholly abstract. I have seen body functions end. I have no trouble imagining how others may end. I have seen my wife’s life end, and before that, her judgment and reasoning and sense…all assaulted by her final brain tumors. I have seen the best minds of my generation…. Mine eyes have seen the glory of the coming…. And I’m tired of it, that is the thing. It is enough to see what is in front of you, that is my conclusion. Often, that is scary enough. Try crossing Menlo Avenue in a wheelchair.
Which makes it a good thing, on this particular day, that I have a lunch. It fills the belly, lunch does, a space otherwise occupied by anxiety. This particular lunch will fill me with pasta and a certain amount of railway news. Neither will be good. That is not the point. I don’t know what the point is, that after sufficient introspection, the point is to move and keep moving. One thing after the next, not running but advancing. Wish me luck.
Unfortunately, it will take more than luck to get me through the Hallelujah Chorus. The latter being featured in my upcoming concert. Recently, the accompanist pointed out that the bass section was having serious trouble with Weep, Weep, Mine Eyes. No news to me. Fortunately, I have a personal trainer in this department. Tom comes by on a weekly basis to help me over the considerable hurdle that is the Menlo Park Chorus. Which led us first to Handle. Hallelujah, hallelujah. And he shall reign. And this goes on forever and ever. Hallelujah, hallelujah. King of Kings. High note of notes. A clef too far forever and ever. Tom and I carried on in this vein. Me trying to get a handle on the chorus. Tom ignoring the pathetic joke. King of Kings. Voice strain of strains. Slow down, he said. This is supposed to be fun. But, I protested, there is no slowing down an entire chorus. Tom shrugged. Sing it your way, slowly, and enjoy it. Whatever you have to do in performance, however imperfect, do that too. So I’ve been thinking about this. Forever and ever.