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Tag: als

Lou Lou

From Alan Schwarz in the Times:

In the 71 years since the Yankees slugger Lou Gehrig declared himself “the luckiest man on the face of the earth,” despite dying from a disease that would soon bear his name, he has stood as America’s leading icon of athletic valor struck down by random, inexplicable fate.

A peer-reviewed paper to be published Wednesday in a leading journal of neuropathology, however, suggests that the demise of athletes like Gehrig and soldiers given a diagnosis of amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma.

Although the paper does not discuss Gehrig specifically, its authors in interviews acknowledged the clear implication: Lou Gehrig might not have had Lou Gehrig’s disease


[Photo Credit: N.Y. Daily News, Drawing by Larry Roibal]

Say Word

On Saturday morning, our downstairs neighbor rang the doorbell. She just finished her sophomore year of high school. Her mother died of ALS this spring. She’s off with her father to travel around the country this summer. When they return they’ll  move to another, more affordable apartment. She brought us a bag filled with booze as a gift because “my dad doesn’t drink anymore.”

We don’t either but still we accepted the liquor and wished her a happy summer. You’d never tell by talking with her that her mother just died. We’ll miss them not being in the building but told her to stop by anytime.

So I had ALS on my mind and I wanted to share with you the story of Tom Judt. He is an accomplished historian who has ALS and has been writing wonderful, short essays for The New York Review of Books. Here is his latest, on words:

In “Politics and the English Language,” Orwell castigated contemporaries for using language to mystify rather than inform. His critique was directed at bad faith: people wrote poorly because they were trying to say something unclear or else deliberately prevaricating. Our problem, it seems to me, is different. Shoddy prose today bespeaks intellectual insecurity: we speak and write badly because we don’t feel confident in what we think and are reluctant to assert it unambiguously (“It’s only my opinion…”). Rather than suffering from the onset of “newspeak,” we risk the rise of “nospeak.”

I am more conscious of these considerations now than at any time in the past. In the grip of a neurological disorder, I am fast losing control of words even as my relationship with the world has been reduced to them. They still form with impeccable discipline and unreduced range in the silence of my thoughts—the view from inside is as rich as ever—but I can no longer convey them with ease. Vowel sounds and sibilant consonants slide out of my mouth, shapeless and inchoate even to my close collaborator. The vocal muscle, for sixty years my reliable alter ego, is failing. Communication, performance, assertion: these are now my weakest assets. Translating being into thought, thought into words, and words into communication will soon be beyond me and I shall be confined to the rhetorical landscape of my interior reflections.

Though I am now more sympathetic to those constrained to silence I remain contemptuous of garbled language. No longer free to exercise it myself, I appreciate more than ever how vital communication is to the republic: not just the means by which we live together but part of what living together means. The wealth of words in which I was raised were a public space in their own right—and properly preserved public spaces are what we so lack today. If words fall into disrepair, what will substitute? They are all we have.

There was a good, long profile on Judt by Wesley Yang  in New York Magazine earlier this year. Check it out.

[Photo Credit: Steve Pyke for the Chronicle Review]

The Light

All he wanted was for his wife to live long enough to see their daughter’s sixteenth birthday. The girl’s birthday was early last month and the wife, whose body had been ravaged by ALS, was alive to see it. They are our downstairs neighbors; the girl sits for our cats when we are away. You’d be hard-pressed to find a sweeter family.

My wife Emily spent hours with them helping navigate insurance claims. On occasion, I made them food. The girl and her mother watched The Oscars with us a few months ago. By that point the mother wasn’t really able to communicate–she made noises but even using a keypad had become too much.

About three weeks ago I saw the husband and he said the end was near. I didn’t tell that to Emily. In fact, I avoided bringing them up entirely. But last week, I mentioned what he’d said and Emily said that he had said as much other times before. “We would have heard something from them…” she said.

* * *

Last night I was in bed reading a 1985 GQ profile on the great columnist Mike Royko written by my pal John Schulian. It was an entertaining look at the world of the big-city columnist that no longer exists. Royko was a son-of-a-bitch of the first order. (“I don’t know who the best is—maybe some guy in Peoria,” Royko said. “But day in, day out, you gotta chase me; I ain’t gonna chase anyone.”) But the end of the piece reveals a tenderness in the man, whose wife died in 1979 at the age of 44:

“I couldnt live with my grief,” Royko says. “I thought I might drink myself to death.”

When he lost his taste for that, he tried to end it all with work. Once again his days stretched to twelve and fourteen hours, lonely seances in the out-of-the-way place where the Sun-Times editorial writers dwelled, a place where reporters he never trusted couldn’t watch him suffer.

Five years have passed since then. To the outside world, it seems the tragedy has been put to rest, for there are still Royko columns condemning San Diego as a nest of John Birchers, and there are still stories coming out of Billy Goat’s about the female bottoms he has patted. But Royko knows the truth, and it has nothing to do with appearances.

“You lose a wife, you never really come out of it,” he says. “What happens is, you become different.”

He lights a cigarette and takes a puff.

“I don’t think my life has had a hell of a lot of meaning since Carol’s death. Since she died, I’ve never been sure what the hell I’m about. I could accept dying tomorrow because I don’t think I fill any great importance to anybody. My life has lost its structure.”

The cigarette is forgotten now, left to burn untended.

“I still know who I am. I’ve been who I am for so frigging long. I’m Royko the columnist. When Carol was alive, I was so much more.”

Maybe that’s smoke getting in his eyes.

I placed the article on my night table and reached over  to turn my BlackBerry off for the night when I saw that I had an e-mail. It was from the husband downstairs. His wife died earlier in the day. She was 51.  

Emily was in the bathroom washing up. I debated whether or not to tell her but in the end I told her. Like me, Emily was broken up.I gave her tissues to dry her tears. We remembered the wife over the past few years and finally we turned out the lights. But we could not close our eyes. The sound of rain pattered off the air conditioner and we lied there in the dark, eyes wide open for what seemed like a long time.

[Photo Credit: Emily Shapiro]

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"This ain't football. We do this every day."
--Earl Weaver