The murmur of the snarkmatrix…

August § The Common Test / 2016-02-16 21:04:46
Robin § Unforgotten / 2016-01-08 21:19:16
MsFitNZ § Towards A Theory of Secondary Literacy / 2015-11-03 21:23:21
Jon Schultz § Bless the toolmakers / 2015-05-04 18:39:56
Jon Schultz § Bless the toolmakers / 2015-05-04 16:32:50
Matt § A leaky rocketship / 2014-11-05 01:49:12
Greg Linch § A leaky rocketship / 2014-11-04 18:05:52
Robin § A leaky rocketship / 2014-11-04 05:11:02
P. Renaud § A leaky rocketship / 2014-11-04 04:13:09
Jay H § Matching cuts / 2014-10-02 02:41:13

Night
 / 

Tony Judt, author of the magisterial book Postwar—really, one of my absolute favorites—has Lou Gehrig’s disease, and it’s progressed to the point where he can’t move his arms or legs.

In the NYRB, he writes:

During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs—since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory.

But then comes the night.

Read on.

2 comments

Yeah.

My post-accident injuries haven’t ever left me as hard-up as Judt’s disease, but I still found myself nodding in agreement throughout the essay. It really is a different world that you occupy when your ability to move yourself around is curtailed.

The normalcy of other people – the assumption of normalcy – turns out to be a big hindrance. I wonder whether Judt wouldn’t benefit (as I did) from living in a residential treatment center with other people who require similar care. But then, in my case, it was a rehab center; and I was there for less than a month.

You want to be home. You want to be normal. You want to talk. You want to be in a room, get your own glass of water, and have no one ever whisper, “I wonder how he’s doing.” And yet, everything conspires against you, from stairs to doorknobs to coffee mugs.

It’s hard. It’s just really hard.

This article just slayed me. Part of me just wants to cry, and part of me wants to hectically search and hope that somehow our civilization is working on making technology to make his life both more bearable and more independent. If fixing this isn’t in our future, what’s the point?

The snarkmatrix awaits you

Below, you can use basic HTML tags and/or Markdown syntax.