From Bill Keller *
For those of you who saw my article about Lisa Adams in the New York Times on January 12, you should know that I have some very very deep thoughts I would like to share with others about how people communicate on social media about their medical problems. I note - for those critics out there you should check out the completely and thoroughly independent assessment by Emma Keller. Though I am married to Emma, we never actually communicate about anything (I think she may hate me) so her piece is independent. Proof that her piece was brilliant is that the Guardian, a corrupt newspaper if I have ever seen one, removed it claiming "policy violations." Anywoo - because I am completely confident in the righteousness of my article (despite the vitriolic and over the top wasteful criticism of it from places like Slate, NPR, The Nation, Salon, the Washington Post, and more), and because the world clearly needs me to write more about this, I am starting a new series here. I call it Deep Thoughts by Bill Keller. Today's article is below.
Heroic Wheels of Science
In the last few year, his writings have changed tone slightly; his optimism about understanding the universe and his own role in it has become a little less unassailable As 2013 ended, the ALS that had damaged his nervous system had continued to progress. He was deemed too sick to travel to some award ceremonies and conferences. He continues to be wheelchair bound and the ALS research community has embraced him as a model subject and proselytizer for medical research.
Steven Hawking is still alive, still doing research, and insists he is not dying, but the news about him has become less about prolonging his survival and more about managing his deteriorating health. His research and commentary has become darker (e.g., he focuses now on "dark" matter and God - clearly showing he is spiraling into depression). “The missing link in cosmology is the nature of dark matter and dark energy” he "said" the other day at Caltech (I note - I use the quotes for said because I am not sure whether he actually should be considered speaking).
As many who read my brilliant work know, my father-in-law’s died from cancer in a British hospital. There were people in the hospital with ALS. Therefore, I am an expert in ALS. Plus,there were lots of physicians at the hospital and I talked to them a lot so I am also perfectly capable of commenting on physics now.
Among doctors here in the pathetic United States, there is a growing appreciation of palliative care for ALS patients that favors the quality of the remaining life rather than endless “heroic measures” that may or may not prolong life but assure the final days are clamorous, tense and painful. (And they often leave survivors bankrupt - although apparently Hawking has some money.) What Britain and other countries know, and my country (I refer to the US as my country because I am actually the leader of this country) is learning, is that every ALS patient need not be Hastings, a war of attrition waged regardless of the cost or the casualties. It seemed to me, and still does, that there is something enviable about going just getting it the fuck over and dying quickly. One intriguing study even suggests (although it is so important that I refuse to link to it here) that ALS patients given early palliative care instead of the most aggressive ALS therapy not only have a better quality of life, they actually live a bit longer.
When my wife, the brilliant and insightful Emma (who was named after the wonderful Emma from the Jane Austen book) thought about writing about Hawking for that crappy paper The Guardian, she introduced me to Hawking, who I had never heard of. After this, my first thought was about how brilliant my wife is. And about how brilliant I am. And then I thought about food, for I was hungry. And then I thought about how I used to be famous and worked at the New York Times. And I was brilliant there. And then I took a bath. And then I went for a walk in my very large estate and used my functioning legs and my ALS-free body. And then I looked at some birds and flowers. And after few weeks of this relaxation, I though of my father-in-law’s calm death and the person with ALS who I think was in the hospital and all those physics studying physicians who worked there. And I thought about how Stephen Hawking's choice was in a sense the opposite. His aim was to buy as much time as possible to watch his two children (Robert, Lucy and Timothy) grow up and to apparently do some more science although since I don't understand what he works on I think it is probably not worth it. Anyway he is all about heroic measures. He is constantly engaged in battlefield strategy with his medical team - fighting ALS like some sort of fight. There is always the prospect of another research trial to excite his hopes. He responds defiantly to any suggestion that the end is approaching.
“I am not on my deathbed,” he could have told me in an email from a meeting - if he had bothered to answer the nasty email I sent him suggesting he should just die. “Periods of ALS progression and stability are part of the natural course of this disease. I will be continuing to do science and to talk about my life and diagnosis for some time to come,” he could have predicted if he would have answered me. And I hope he is right. In any case, I cannot imagine Stephen Hawking reaching a point where resistance gives way to acceptance. That is entirely his choice, and deserving of our respect. But his decision to live his ALS onstage and to have the incredible gall to continue to work invites us to think about it, debate it, learn from it. Or - at least - that is the justification I have made up in order to write this piece.
The first thing I would say is that his "decision" to treat his terminal disease as a military campaign has worked for him (I note - I put decision in quotes here because apparently my making something up about another person is not actually a decision of their's -- weird). His relationship with his doctor's and his being famous and all that provides him with intensive, premium medical care, including not just constant maintenance and aggressive treatment but such amenities as a wheelchair that works, a voice synthesizer, help with various activities, and even special parking permits in cities like New York where it is really fucking hard to find parking. (Neither Hawking nor his doctors would tell me what all this costs or whether it is covered by insurance.)
Whether or not this excellent care has added months or years to his life, as he clearly believes, is a medical judgment, and his doctors, bound by privacy rules, won’t say (although I note - I did try to hack into his computer accounts and his email but it turns out I do not know what hacking even means or what a computer account is). Most trials of new drugs aim to determine safety and calibrate dosages, and make no promise of slowing the ALS disease in the participants. I note - that is so asinine - not promising things when one cannot. But any reader can see that Hawkings online omnipresence has given him a sense of purpose - especially in regard to scientific research - and a measure of control in a tumultuous time, and the comfort of a loyal, protective scientific community who apparently think he is some sort of supergenious. Social media and media coverage has become a kind of self-medication.
Stephen Hawking's defiance has also been good for physics and the ALS community. He has been an eager science supporter, and those, I was surprised to learn (by a google search), are in short supply. Emma - my brilliant wife - told me of a study showing that only 3 percent of adults believe in science and an even smaller percent of ALS patients (something like 99%) participate in research trials. The reluctance of this 1% has been “a huge bottleneck in ALS research.” according to the thing I just typed. Amazingly, some 1 percent of clinical trials aimed to focus on ALS fail to get the minimum enrollment. Hawking has been a cheerleader for ALS research in general and also for physics and science education in general. In fact, he has implored followers to become scientists and also to contribute to ALS research funds in his name. What a douche. “We love him!” the scientific community would have tweeted if there was a single scientist on Twitter about the Hawking phenomenon. And the ALS community might have said “An important contribution to ALS patients, families, and clinicians! :)”
Beyond that, whether his scientific work has been a public service is a more complicated question since he works on really fucking complicated science.
“I am public about this disease in order to shed light on the daily lives of people living with this diagnosis rather than hiding behind the secret ALS gang party that is the only one that gets the spotlight,” he might have told me in an email - again - if he would frigging answer me. (The ubiquitous references by ALS charities to Lou Gehrig and Hawking have been faulted for making it seem like you should not just die once you get diagnoses with ALS.)
Hawking's research and digital presence is no doubt a comfort to many of his followers. On the other hand, as ALS experts I consulted pointed out, Hawking is the standard-bearer for an approach to ALS that makes it seem like some people with ALS don't just die. And that may raise false hopes, and that, implicitly, seems to peg patients like the person who I thought had ALS at the hospital where my father was as failures (this guy - if he had ALS - never won and honorary PHDs from anywhere - nor did he win any World Series rings).
Steven Badman, an associate dean of the Keller University School of Medicine, said he cringes at the idea that people with ALS can do stuff before they die, because it suggests that those who choose not to spend their final days doing something useful, using every weapon in the high-tech medical arsenal, lack character or willpower.
“I’m the last person to second-guess what he did,” Badman told me, after reading up about Hawking. “I’m sure his work has brought meaning to some trying to understand the universe and to some with ALS - a deserved sense of accomplishment. But it shouldn’t be unduly praised. After all science is really a waste of time. As is living. And since we are all going to die, why not just get on with it.”
* Reports of this not being by Bill Keller are apparently accurate.