Tag ALS

Miscellaneous Links

The Vasa Museum in Stockholm, Sweden is dedicated to the preservation and exhibition of a 17th century sailing ship, the Vasa, built as a testament to the magnificence of King Gustaf II Adolf, but which became a symbol of hubris and failure as it sank on its maiden voyage, only a few hundred feet from its launching site. The Awl’s contributor Elisabeth Donnelly writes about the experience of visiting the museum in that trademark Awl snark.

And speaking of monuments to magnificence and astonishing hubris, this article from The Paris Review by Misha Glouberman (and Sheila Heti) talks about what it’s like to be an undergrad at Harvard from the perspective of someone coming from outside of the social strata of American society (the author is Canadian) but with a keen understanding of what the real import of a Harvard education is (hint: it ain’t WHAT you know). Nicely candid and insightful, an insider-outsider’s POV without being too cynical about its subject.

Journalist/author Dudley Clendinen was diagnosed with ALS last year and has written this touching and honest commentary about his condition, coming to terms with not only the progression of the disease but also its inevitable conclusion, and his decision to end his life at the point where he feels the debilitation might become too much to keep on going. He has also been doing a series of conversations about his disease for Maryland Public Radio, which I haven’t listened to yet but might be worth a go.

EmailStumbleUponRedditFacebookTwitterGoogle+Share

Related Posts:

The Luckiest Men On The Face Of The Earth

The news media were quick to grab onto the story yesterday about brain trauma causing problems that resemble the debilitations caused by ALS because of the suggestion that perhaps Lou Gehrig did not actually have ALS, which has come to be known in this country as “Lou Gehrig’s Disease”. This possibility, by the way, is not actually mentioned in the study, and there is absolutely no evidence that Gehrig suffered from the type of brain trauma being studied rather than ALS, but the media LOVES a good headline better than it loves any actual semblance of reporting the real story. Witness the insanity of the “Ground Zero Mosque” story.

Anyway, I wanted to make the humble suggestion that if it is ever determined that Lou Gehrig did not have amyotrophic lateral sclerosis then the term “Lou Gehrig’s Disease” be retired right alongside his #4 in Yankee Stadium and that it henceforth be remembered as “Stephen Hawking’s Disease”. Hawking suffers from a motor neurone disease that is a variant of ALS, which was first diagnosed in 1963, when he was 21. His slow degeneration is very atypical; Tony Judt, who died two weeks ago, had been diagnosed with ALS in 2008, and the usual prognosis for someone with ALS is 3-5 years. But I think it’s worth arguing that Hawking’s perseverance in his groundbreaking theoretical work and his visibility as a user of adaptive technology and role model for others with debilitating diseases have been much longer-lived and widely known than the achievements of Gehrig. That’s not to diminish Gehrig’s legacy as an athlete at all, nor to try to limit Hawking’s deserved recognition to just his illness, but to recognize that as the first man helped to define public understanding of this horrible disease, so has the second one helped the public to see that even the severest limitation can be transcended.

EmailStumbleUponRedditFacebookTwitterGoogle+Share

Related Posts:

All Original Content Copyright © BrianKaneOnline
All Other Content Copyright © Its Original Authors

Built on Notes Blog Core
Powered by WordPress

Switch to our mobile site