I will be eighty in just a few months. I know I will never catch up with those hardy paras already eighty or more, but I do feel like I’ve already joined their club and am getting to know the ground rules. Rule number one: with paralysis, it never ends.
I’ve been in my chair for 29 years; again not a record, just a fact. When I told my wife I was writing about aging and paralysis, her immediate reaction was: “What’s the difference?”
There isn’t that big a difference, really. You have entered, on foot or on wheels, the Land of the Elderly, where the odd man or woman out is the one not in some way impaired.
Unlike being paralyzed in your twenties or thirties, or fifties, every one of your friends in their seventies and eighties is pretty much in the same boat or an even leakier boat. As they talk about the vagaries of their breast or bladder cancer or advancing MS or Parkinson’s or a hundred other chronic, often progressive conditions, you realize that paralysis in this age of medicine is a drag but rarely a life-threatening drag. Lots of people have crippling arthritis, making them as mobility-challenged as you. As you look around, you realize that at least my version of paralysis – waist down, no unfixable pain, no compromised heart, brain, or lungs – is rarely the topic of conversation, unlike in my fifties when it was often the whole conversation. You are no longer special, either in the good or bad sense. You are just another old-timer in the waiting room, hoping your blood panels look good.
As a healthy-aging writer once said, when you get up in years, your health is not just another job. It’s your only job. Of course, you can do other things – work, travel, play with your grandkids, binge-watch “The White Lotus” – but all those normal activities take a backseat to your health. And maybe it’s just me (I doubt it), but much of your waking time is eaten up with doctor appointments, home nurse appointments, physical therapy, and the never-ending need to stretch and exercise. This week alone, I saw a retinal specialist on Monday (a flaw on my retina), a wound nurse on Tuesday, physical therapy on Wednesday, and a wound specialist/PA on Thursday to check out the wounds the nurse rebandaged on Tuesday. If you are writing a novel, hopefully, you like to write at night or on the weekends because almost every weekday is interrupted by some medical obligation.
It dawned on me recently that paralysis at 80, like baseball, is a game of inches. The greatest fear is, of course, the fear of falling. And falling usually involves an inches-long mistake. A few weeks back, I fell hard in a mall because I didn’t see an unmarked curb of four inches. Transferring from chair to bed, I have to maneuver the chair to avoid hitting the wheel, but not too much, or I can’t make the leap. My wheelchair was recently adjusted two inches to maintain my balance better and not fall backwards. Very small changes with very big consequences. The same things could happen in your thirties or forties, but you probably have more strength and flexibility and a quicker reaction time than your average octogenarian. The older you get, the more vulnerable you become.
I guess the best thing about being old and paralyzed is that you have been around this block a time or two or three, and you know that wounds heal, shoulders can be fixed, arteries can be unblocked, and that, barring some unforeseen catastrophe, you are in it for the long haul. It never ends, but you can handle it.
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