Paralyzed from the Neck Down

I wrote this op-ed for the Wall Street Journal of Saturday, April 10th, 2015. They published it with very light edits. Here it is in the original form.

Anthony Weller is the author of seven books (novels, history, travel). Until his illness, he was internationally known as a jazz and classical guitarist. Visit www.anthonyweller.com & http://www.youcaring.com/medical-fundraiser/linking-hands-for-anthony/270427.

The strangest aspect of being paralyzed is that nobody ever, ever asks you what it’s like. This may be from concern over not hurting your feelings. Or not wanting to bring up the issue. Or superstition that your paralysis might be contagious if discussed. It’s still odd that nobody inquires. It’s the elephant – the screaming banshee from Hell – in the room, and it’s mighty big.

For about ten years I’ve suffered from primary progressive multiple sclerosis. This is not the popular form of MS that you read about in optimistic articles. It’s relentless, and does not go into remission or on vacation. It rarely affects the brain and concentrates on the limbs. There’s no treatment. However, I’m not in pain and I’m not in Syria. I can read; I breathe without assistance. I can talk and think. This is a picnic: it may not always be thus.

And I’m able to live at home – thanks to a devoted wife, the largess of old friends who set up a website on my behalf, the kindness of strangers, and the expertise of several professional caregivers.

Q: “Was that a spasm? Or were you squeezing my hand?”

When I was a smartass teenager in the 1970s, I made the usual jokes about people “paralyzed from the neck down.” You never suspect that’s you, half a lifetime on.

I’ve been immobilized for five years. Besides incalculable personal pleasures, like daily walks with my wife, I also lost careers as a jazz and classical guitarist, though I still teach a few advanced students. Having published seven books of fiction and nonfiction since 1996, although I no longer roam the world as a journalist, I keep writing by dictation.

The process isn’t as awkward as it sounds: Milton dictated, as (at times) did Henry James, Mark Twain, and Erle Stanley Gardner. I have no excuse for second-rate work.

The first thing you have to get used to is total helplessness. You’re dependent on somebody else for everything. If you want your ear scratched, you have to ask. You soon learn that you can’t just ask every time the problem arises, or you’d be asking the whole day. And you remember all too vividly the itch that assailed you in the middle of the night before last, that wasn’t worth waking somebody up to relieve.

Say goodbye to any sense of personal space, too. People can pat or adjust you however and whenever they like. You’re everybody’s puppy, and if you’re lucky, people find you amusing. If you’re very lucky, they recognize you as intrinsically yourself.

Sometimes, of course, you make them profoundly uncomfortable. Like the old friend who visited one afternoon a year ago and who I never heard from again.

And if you’re not thoughtful by nature, you certainly become thoughtful. There isn’t much else to do. You find yourself reflecting on what it means to be human. The abilities to stand up and walk are pretty fundamental, and when you no longer have them, you no longer feel fully human. This seems unavoidable, alas.

Q: “How can you work through your personal crap when you can’t even move?” 

The natural question of Why me? becomes, with time, the larger question of Why? As a Nazi concentration-camp guard put it in a vastly different context, “There is no why here.” Helpful friends have cited the poem, Do Not Go Gentle Into That Good Night. I have nothing against Dylan Thomas, but that is a young man’s poem. Determination must carry far beyond rage – into the paradox of an acceptance without surrender.

When I was younger, I imagined (incorrectly) that being paralyzed feels like being encased in stone. Want to know the sensation? Try telling a cat to leave the room. It’ll ignore you. When I tell my right hand to move, it ignores me. That’s what it’s like to be paralyzed: your limbs have turned into uncooperative, alien pets. They don’t understand your language, and they’re not interested in what you want.

You swiftly become pragmatic. Complaining changes nothing, and doesn’t make you feel better – so you learn not to complain. You probably stop being romantic in the sense of optimistic. This is particularly difficult for Americans, since romance is written into our bill of rights; any American can grow up to be rich, to be president.

Another personal loss, for me, is books. The act of writing has been distorted, yes, but not as much as the act of reading, which was always a solitary pleasure. Since I can’t turn pages anymore, the solitude’s over. The alternatives, of course, are horrific.

Q: Where do you find an invalid?

A: Where you left him.

You find yourself, unavoidably, living in the past. Happiness isn’t is, but was. You try not to contemplate the future too much. Nor the future of the person you love.