Tony Judt is dying, cruelly. Eighteen months ago the British historian — a professor of European history at New York University and the author of Postwar, a bravura history of the continent since 1945 — was diagnosed with amyotrophic lateral sclerosis (ALS). Known in the US as Lou Gehrig’s disease, ALS is a motor neurone disorder. It is a hideous condition. Imagine the human body is a house, filled with lit rooms. ALS turns off the electricity, switch by switch. First you lose the use of your fingers, then your limbs, then the muscles in your torso and so on.
“It is”, Judt says, “like being in a prison which is shrinking six inches every day.”
In the spring of 2008 Judt, who was then a sprightly 60-year-old, noticed that he was having difficulty manipulating corkscrews and occasionally missed the keys while typing. He thought nothing of it. Three months later he threw a baseball, which went nowhere despite “immense effort”. Short walks uphill, he noticed, were also becoming a struggle. In August 2008 Judt went to see a doctor, who ran tests and gave him the news. Now 62, he is quadriplegic and needs assistance to breathe.
There is no pain associated with ALS, nor any loss of mental function. “One is”, he wrote in The New York Review of Books, “left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one’s own deterioration.”
Oh yes, I should have said — Judt still writes, brilliantly. Because he can still talk (with a microphone to catch his weakening voice) he can, with the help of an amanuensis, publish. His angry new book about the failure of wealth-obsessed western democracies, Ill Fares the Land, was written that way, as was his recent series of hilarious and nostalgic essays for The New York Review of Books. This past week, Judt has been corresponding with The Sunday Times by email.
I ask him whether his mental sharpness is a blessing or a curse.
“It’s not as though I could try being dumb and compare the two sensations,” he says. “But I have to assume it’s a blessing … [although] I’m not sure that it’s mental sharpness that has kept me going so much as sheer bloody-minded willpower — or else the sort of ego that adapts well to overachieving.”
Judt is oddly chipper. How has he reckoned with the fact that his condition is fatal? “Funnily enough,” he says, “this has not been difficult. The foreshortened life it implies forces all kinds of thoughts and decisions upon one, but the fact of death itself seems the least troubling of them.
“Perhaps because I have a youngish family [Judt is married to the dance critic Jennifer Homans and has two sons, aged 15 and 12] and worry more about their life after my death than the death itself.”
To write, Judt is forced to think in new ways. He is confined to a wheelchair all day and needs round-the-clock care. Reading is no longer a “private pleasure” because someone has to turn the pages for him. And, clearly, he can no longer make notes. To overcome those obstacles, Judt has a technique for creating a “memory palace” in his mind. At night he puts a sentence or theme into each room; in the morning he pulls the contents out again.
I suggest to Judt that his disease has made his writing funnier. Indeed, I had trouble finishing his essay on pompous French intellectuals because of the hot coffee pouring out of my nose. The pitch-perfect story of the Frenchman who witnessed the trials of George Stephenson’s Rocket on the Liverpool and Manchester Railway in 1830, saw the train chug efficiently between the two cities and then reported his findings back to Paris — “Impossible,” he said. “It cannot work” — was too much. When did he discover comedy?
“You are not the first to ask the question,” he says. “I do have a mortal disease and I am thus much more conscious of impending death than most people my age or than I was until recently. That concentrates the mind on the past and on the kinds of thoughts — if any — that seem worth leaving behind: to family, to friends, to readers … [The essays] are, also, a challenge. It’s not always easy but it’s great fun — and you get to say malevolent little things that would be quite inappropriate elsewhere.”
Judt’s final book tackles politics. In Ill Fares the Land he argues that “something is profoundly wrong with the way we live today. For 30 years we have made a virtue out of the pursuit of material self-interest: indeed, this very pursuit now constitutes whatever remains of our sense of collective purpose.
We know what things cost but have no idea what they are worth”.
What other goals should Britain have? “Individuals have always sought to do well materially and flourish accordingly,” Judt says. “What went wrong, it seems to me, in the 1970s and afterwards was that we lost sight of the need to create a public arena in which to live, encouraged as we were to suppose that mere private success would, in the aggregate, constitute public wellbeing. It doesn’t and hasn’t.”
What’s refreshing about Judt is that although he is avowedly “of the left”, he is not tribal. He will happily use arguments from a kaleidoscope of political positions — including those of Friedrich Hayek, Adam Smith, John Stuart Mill and Edmund Burke — to bolster his own. Indeed, towards the end of Ill Fares the Land, he repeats Burke’s celebrated conservative maxim that society is “a partnership not only between those who are living, but between those who are living, those who are dead, and those who are yet to be born”.
Judt has had cause to think of what he will leave to future generations. How have his sons taken his illness? “With remarkable equanimity — partly, I like to think, because I was very direct at each stage about what was and was not happening,” Judt says. “I don’t think our relationship has changed fundamentally. We continue to talk much as we always have. I think we’ve done better than might have been expected and remain close — partly perhaps because I write and talk a lot and they thus have access to my feelings in a way they would not if I were consigned to silence.”
Indeed, the family — as well as carers and assistants — often gather at the end of the day to watch movies. When the older son is choosing, it tends to be “Bournes, Hitchcocks and pretty much any thriller”; with the younger, who evidently has precocious tastes, the films can range from “Japanese to early European”.
Judt will soon leave his children behind. He tells me he is determined to do so at a time and in a manner of his choosing.
“The real issue is communication,” he says. “So long as I can still speak, I feel I still have a role to play in my family, in my dealings with friends and intellectual interlocutors and in the larger public space. But if I can’t speak [a predictable eventuality with this disease], then I could and can well see wanting to end my life. However wonderful the technology available, it really doesn’t get much past allowing you to use your right eyebrow to request chicken soup. I believe at that point euthanasia would make sense — and I have certainly discussed it in those terms with my wife.”
How would his death be managed? Would Judt’s wife be involved?
“In the case of a terminal disease whose final stages can be horrific, I believe it is acceptable practice to allow the patient to request a declining level of maintenance in such a way that you can choose to end your life without requiring sudden intervention of an active kind by a third party,” he says. “Consequently, no one would have to be in any sense illegally complicit.”
He adds: “Of course, one never knows how one will feel: I’m sure if you had asked me five years ago whether the prospect of being quadriplegic and dependent on a breathing tube was one I could imagine for an extended period, I might have said ‘no way’ … All the same, voicelessness does seem a tipping point.”
Judt is, for now, some way from making those decisions. And, as his work shows, he remains anything but voiceless. Tolstoy wrote: “There are no conditions of life to which a man cannot get accustomed, especially if he sees them accepted by everyone around him”, but Judt refuses to make himself comfortable. He continues to fight for his beliefs and against his merciless sentence.