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The satisfactions are notoriously fleeting

A few years ago, Tony Judt received a diagnosis of Lou Gehrig's disease. At this point, he's paralyzed from the neck down. His essay on the experience -- dictated, of course -- particularly the torments of the night, is deeply affecting, not least because Judt stubbornly refuses to pretend that silver linings compensate for unending storms:

I suppose I should be at least mildly satisfied to know that I have found within myself the sort of survival mechanism that most normal people only read about in accounts of natural disasters or isolation cells. And it is true that this disease has its enabling dimension: thanks to my inability to take notes or prepare them, my memory—already quite good—has improved considerably, with the help of techniques adapted from the "memory palace" so intriguingly depicted by Jonathan Spence. But the satisfactions of compensation are notoriously fleeting. There is no saving grace in being confined to an iron suit, cold and unforgiving. The pleasures of mental agility are much overstated, inevitably—as it now appears to me—by those not exclusively dependent upon them. Much the same can be said of well-meaning encouragements to find nonphysical compensations for physical inadequacy. That way lies futility. Loss is loss, and nothing is gained by calling it by a nicer name. My nights are intriguing; but I could do without them.

I'd also recommend Judt's recent lecture -- delivered from his wheelchair -- on what is living and what is dead in social democracy.

By Ezra Klein  |  December 30, 2009; 1:00 PM ET
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Interesting read from Mr. Judt. ALS is a tough disease, and there has been frustratingly slow progress in the past few decades. It may that there is an enzyme deficiency that interferes with the nerve cells' ability to repair themselves. There are many neurological diseases in this category, and the breakthrough will come when we figure out how to get the enzyme across the blood-brain barrier, which is normally impermeably to large molecules. I think it will happen in our lifetimes.

Posted by: bmull | December 30, 2009 2:46 PM | Report abuse

Thanks for this point to Judt's work. Haven't read the essay yet, but his lecture leaves me speechless for the moment with mind racing. Much to think about here; no comments yet.

Very much appreciate his historical perspective re: the grand-daddy economists. It filled in some gaps (I suffer numerous gaps in the economics arena) :) and is timely for me (just now reading Naomi Klein's Shock Doctrine).

Posted by: onewing1 | December 30, 2009 3:57 PM | Report abuse

This is a very tragic diagnosis. There is no reason to be so optimistic about finding a cure. A young Israeli diagnosed while he was a student at Harvard business school has started a foundation called prize4life, which raises money to give awards to researchers who make breakthroughs, as defined by the board of the foundation. As a business student, he understood that ALS is seriously lacking in research because of the relatively few sufferers, compared to say cancer, and their short lifespans, making it less profitable to develop drugs for them. He understands the link between the profit motive and discovery of cures. Can that be said of the supporters of "healthcare reform"? Well, can it? Not one of you makes the case that these reforms will be good for research and development.

Posted by: truck1 | December 30, 2009 4:42 PM | Report abuse

Not one of you makes the case that these reforms will be good for research and development.

And how many people should die for lack of access to primary care in order to improve the R&D situation. Well, how many?

The problem of research into "orphan" diseases is real, but dealing with it need not be done in opposition to primary care access.

Posted by: zimbar | December 31, 2009 12:25 PM | Report abuse

"Reform" is about much more than primary care access, as you know. It is about control of pricing at every single level, and control of profit at every single level. If you have ever gone to an emergency room you would know that uninsured people have access to modern care, though they may have to wait a couple of hours. NO ONE gets thrown out because they can't pay. So who are these people dying, by the hundreds of thousands? Oh, they waited until it was an emergency? That is across the board behavior from people of all socioeconomic groups. People get in all kinds of conditions who have good health insurance. Look at press secretary Gibbs. He is at risk of all kinds of things because of out of control weight gain. Oh, same for Barney Frank. The exponents of "reform" make no case that this bill will help r & d. They are just in shut up mode about it, and hope people won't talk too much about the dampening effect of taking medical research out of the marketplace and putting it under the controlling hand of the government.

Posted by: truck1 | December 31, 2009 2:33 PM | Report abuse

*So who are these people dying, by the hundreds of thousands? Oh, they waited until it was an emergency? That is across the board behavior from people of all socioeconomic groups*

That is a stunningly ignorant statement. It is not across-the-board behavior from all economic groups. Insurance means that I see my doctor (or talk to him over the phone) to get a prescription for an eye or throat infection rather than hoping it "goes away" until I can't handle it any more. It means that I call up my dentist to get a toothache looked at rather than showing up at the emergency room to have it pulled when I become septic. Insurance means having regular followups with your doctor to check your progress on a remedy rather than waiting until the problem flies out of control, leaving you back in the emergency room where you started from. Insurance means being able to seek out another doctor for a second opinion rather than hope that your first doctor didn't miss something. Insurance means my wages aren't being garnished every month to pay off an ER bill, leaving me reluctant to ever go through that again.

And someone who says that in an emergency room that you get seen within "a couple of hours"? Sounds like someone, contrary to his claim, doesn't actually show up to the emergency room when he has a problem.

Posted by: tyromania | January 2, 2010 10:29 AM | Report abuse

Also, truck1, thanks for defecating on a thread with your ignorant opinions on HCR when it comes to a moving essay about a guy grappling with ALS. It takes a warped, narcissistic human being to turn a thread about ALS into a forum for mouthing off about your ignorance and Gibbs.

Posted by: tyromania | January 2, 2010 7:43 PM | Report abuse

It takes a vulgarian to use the word "defecating" in a post like this. Why not go further? How do you determine that someone died from lack of insurance? And the figure of 150,000 -- by what process is that number gotten?

Posted by: truck1 | January 3, 2010 5:51 PM | Report abuse

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