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Hawking and ALS on the Big Screen


Every year, Joann and I try to see all Best Picture nominees in the run-up to the Oscars. We usually fall one or two movies short. There are eight nominees this year and we have seen five of them. Last weekend, we saw The Theory of Everything.

This film has as its subject one of my heroes: Stephen Hawking. I have been a fanboy since the publication of his A Brief History of Time in 1988. I have read and reread it along with his The Universe in a Nutshell. I find his (and others’) work on the big questions of cosmology and physics to be endlessly fascinating. There are even moments of clarity when I convince myself I understand some of what I read. Alas, if only I were able to do the math …

Of course, another subject of this film is very near and dear to me. Well, near anyway. Hawking has lived now for more than 50 years with ALS (called motor neurone disease in the UK). I have some passing acquaintance with it as well, though I find it to be much less interesting a subject than the nature of space-time.

I am no film critic, but here are some of my scattered thoughts about the movie.

The actor who plays Hawking in the film, Eddie Redmayne, gives an extraordinary performance. I can’t imagine how he was able to do it. He is nominated in the Best Actor category and I would guess he has a very good shot at winning the award. The film itself is good, but I would not expect it to win Best Picture.[1]

The film makes much of the conflict between Hawking’s atheism and the Church of England Christianity of his wife Jane. This is undoubtedly based in the reality of their marriage (the film is based on her memoir, Travelling to Infinity). But the film hammers a little too hard on the notion that proof that the Universe has no boundary is tantamount to proof of the nonexistence of God.[2]

I was disappointed that there was so little of the science behind Hawking’s theories in the film. But this is entertainment, not science. Still, I hope at least some are inspired to read more about his work.

Some PALS (people with ALS) express disappointment that the film did not do more to portray the day-to-day challenges of living with the disease. Yes, a lot is passed over or muted. In one scene he is lifted off of a toilet but, oddly, he is fully dressed. But this is first and foremost a film about Hawking and his relationship with his first wife. Again, it is entertainment. Still, no one who sees this movie will come away thinking, “Gee, ALS doesn’t seem too bad to me.”[3]

Wow. The extent to which technology has transformed the lives of ALS patients is incredible. The film really portrays the crudity of adaptive equipment available at the time of Hawking’s disease onset. I take for granted a personal computer which I can use in a myriad of creative ways: to read, write, learn, listen to music and podcasts, watch films, socialize, play games, edit photographs and much, much more. In 1963 personal computers did not exist, let alone the World Wide Web. Eventually, I may use a computer to speak as Hawking does. But even this capability did not exist when he first needed it–it was created specifically for him.

Stephen Hawking’s ALS is often a source of befuddlement. How has he lived with it for 50 years? Is he a rolling miracle and/or does he have some sort of variant of the disease? The truth is that there is no standard progression and that rarely, quite rarely, ALS plateaus. From what I gather from his biography, his ALS progressed at a fairly typical rate for a few years but then plateaued–at least in respect to his breathing. It is possible to live a long time with this disease on a ventilator, but though Hawking was trached after a bout of pneumonia (a very typical situation) he did not go on a ventilator–at least not full-time–for quite a while after that. This is certainly very rare. But it is undoubtedly true that the extraordinary care he receives and the uniquely rich “life of the mind” he enjoys have gone a long way in keeping him with us.

Hawking is sometimes criticized by PALS and others affected by the disease for not doing more publicly to raise awareness, advocate for a cure and, even, for not dedicating his extraordinary intelligence to the task of finding a cure. I couldn’t disagree more. I for one am inspired by his steadfast determination to not let his life be defined by the disease. He has pursued his interests in a way that has made his life worth living. Science and humanity are richer for his contributions. He has truly defeated the disease!

Live even longer and continue to prosper, Doctor Hawking!

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Notes

  1. There are three bio pics nominated. If I had to choose right now, I would probably select Selma as the best film of the year. This may be nothing more than evidence of its powerful subject matter and heavy emotional weight. That and the fact that I saw it just last night. The Imitation Game has similar attributes and is a very fine film. However, I have been disappointed to learn of significant distortions in its portrayal of Alan Turing. The Theory of Everything is, in my opinion, good but not quite up to the standards of these two.
     
    Boyhood is one of two favorites to win at this point. I enjoyed it and can appreciate its unique accomplishment (it was filmed over a period of 12 years and we get to see its central character grow up), but I wasn’t over-impressed with its story line.
     
    I am a big fan of Wes Anderson’s films and thoroughly enjoyed The Grand Hotel Budapest. But it does not crack the top three of his films for me.
     
    The three nominated pictures I have yet to see are Birdman (apparently the co-favorite to win the award), Whiplash and American Sniper. [^]
  2. Open-minded people of faith have no problems with scientific truths and there will always be a place for a God in, above and/or about their Universe. Biblical literalists and “God in the gaps” creationists will never accept any proof of a self-contained, boundless Universe that may seem to exclude an anthropomorphic, cosmic-string-pulling Creator. [^]
  3. It has been an extraordinary year or so for ALS awareness. The ice bucket challenge raised upwards of $200 million worldwide. (The ALSA alone took in at least $125 million–an amount sufficient to buy 10 or 11 hours of flight time for one of the US military’s B-2 bombers.) Then, two big-budget films with the disease at their centers: this one and the Hilary Swank picture You’re Not You. It remains to be seen what good this awareness may do. [^]

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