When I have a particularly difficult time navigating my new physical and social situation, I look for examples of people who have continued to live their lives with grace and poise despite physical limitations. No doubt, there are countless examples of men and women, more or less famous, who can astound any of us with their resolve and perseverance. I’m just scratching at the surface.
The one example I already had before my injury, who, in a way, prepared me for it, was British historian Tony Judt. He was diagnosed with ALS (Lou Gehrig’s disease) in 2009, and died a year later. His widow, Jennifer Homans, recently wrote a piece for The New York Review of Books, which reminded me of the many reasons Judt is often on my mind.
Here are a few excerpts:
When Tony was first diagnosed with ALS he knew he would die, soon. He knew it before any doctor told him; and he continued to know it even as we pursued every possible alternative explanation and cure. He knew it because it was happening to him every day: hands, arms, legs, breathing passed out of his control with terrifying speed. It was impossible to keep up, a dizzying and exhausting time of doctors and tests and daily crises; of emotions too large and consequential to bear; of bewilderment and determination; of anger, grief, desperation, and love.
The more he retreated the more public he became. His private life at home and with friends was his greatest comfort but it was also deeply sad: he couldn’t be the things he wanted to be and he was haunted and humiliated by his “old” self—what he called “the old Tony,” who was lost to him forever. There were other places that it was in some ways easier to be: portals to the world where he could find his way, at least momentarily, out of the bubble and back to himself. E-mail and the disembodied, virtual World Wide Web was one. Words and memory were the others. With the help of his family and friends and especially his extraordinary assistant, Eugene Rusyn, who had a way of effacing himself and could type at the speed of thought and speech, Tony could sit at the computer and we could act as his hands, typing his words and opening his view electronically out onto the world. And so he took on more and more writing, more and more e-mail and electronic interviews; anything where people could hear or read but not see.