Historian Tony Judt died on Friday at age 62, from complications of amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. He had been diagnosed not quite two years ago. Although he was paralyzed and on a ventilator, Judt was teaching and writing up to the end. All this year I was swept up in his series of reminiscences written for the New York Review of Books; they were distinctly elegiac but also lively and sweet, musings on growing up in Britain, identity, academia, and his illness. I enjoyed them even knowing the price they came at:
Imagine for a moment that you had been obliged instead to lie absolutely motionless on your back—by no means the best sleeping position, but the only one I can tolerate—for seven unbroken hours and constrained to come up with ways to render this Calvary tolerable not just for one night but for the rest of your life.
My solution has been to scroll through my life, my thoughts, my fantasies, my memories, mis-memories, and the like until I have chanced upon events, people, or narratives that I can employ to divert my mind from the body in which it is encased. These mental exercises have to be interesting enough to hold my attention and see me through an intolerable itch in my inner ear or lower back; but they also have to be boring and predictable enough to serve as a reliable prelude and encouragement to sleep.
In a strange and sad coincidence, only a few days before I had been discussing our new Short Shelf with contributor Lynn Reed, and she had suggested an ALS series. We talked about our personal experience with the disease, and I mentioned Judt and his essays. I had planned to post her piece a bit later in the month, but in honor of Tony Judt—whom I didn’t always agree with but who always stated his case eloquently, and who fought the good fight—we bring you the ALS Short Shelf:
By Lynn Reed
Tales from the Bed: On Living, Dying, and Having it All by Jenifer Estess
Jenifer Estess graduated from New York University with a B.A. in drama, co-founded the Naked Angels theater company and dreamed of becoming well-known and successful. She was on the verge of achieving all this when disaster struck her at 35. This memoir is about what happens when your dreams are reached by way of a nightmare.
Estess was full of vigor and energy, living life in the fast lane. When she became aware of strange rippling sensations in her legs and feeling exhausted after walking a city block she consulted a doctor, who gave her the devastating results: amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease, or ALS. Jenifer did become a celebrity of sorts—she and her sisters started Project ALS, which raises funds for finding a cure. As her condition deteriorated, she became more and more famous and friendly with the Hollywood elite, and she describes the irony of achieving this renown and attention just as her body closed down. She was finally on the Today show, but not the way she had planned. (The foreword on this memoir is by Katie Couric, and the blurbs on the back are from Michael Fox, Sarah Jessica Parker, Ben Stiller, and Christopher Reeve—all of whom became friends and supporters. Reeve cites Estess as his inspiration.) This is also a tale of the way family can save you; in Jenifer’s case, her two sisters took care of her and enabled her to be successful, maintaining love and dignity until she died, in 2003, at the age of 42.
You’re Not You by Michelle Wildgen
At the beginning of this novel we meet a bright young college student named Bec, who is having an affair with a professor and seems to be drifting through life. Everything changes, though, when she takes on a summer job as a caretaker for Kate, who has ALS; Bec has been hired by her husband to help with her care.Kate’s condition starts to deteriorate, as expected, and Bec finds she needs to do more and more for her—especially after Kate discovers her husband is having an affair and kicks him out of their home. Bec eventually becomes Kate’s voice, ever mindful of what Kate would want, which is not necessarily what Bec thinks best.
There are quite a few stories about people having ALS, written as both fiction and nonfiction. This novel stands out for many reasons, and not only as a story about a young woman’s coming of age while dealing with another’s terminal illness. One reason is Kate herself. Wildgen puts us into the mind and body of someone with ALS, and the frustration of losing independence—especially for someone as driven and directed as Kate. Also memorable are the scenes noted in the Publishers Weekly review: “Wildgen’s writing becomes clear and determined, daring to spotlight an almost taboo subject—the need for sex among the sick.” You’re Not You also tackles the responsibility we owe our loved ones when they are faced with a crisis like this; Kate’s husband is portrayed as a good man in a difficult (to say the least) situation. This is a book I will never forget.
Personal Injuries by Scott Turow
You may wonder why I’m including a mystery novel (of sorts) by Scott Turow. This story is about a brash, corrupt and ambitious lawyer named Robbie Feaver, forced by the U.S. Attorney and the FBI to help them get to the bottom of judicial corruption. That description may not sound all that exciting, or like something you’d want to run out and read, but this is actually my favorite of Turow’s books. It’s more character-driven than any of his other novels, and as a page-turner to boot.
What’s barely mentioned in any of the professional reviews or summaries is that Robbie is married to a woman in the late stages of ALS. He is devoted to her, and the scenes with her are the most touching and memorable in the book. Turow goes into quite a bit of detail about the devastating effects of the disease, both on the sufferer and his or her loved ones. One of the reasons this story will always stay with me is the way Turow manages to combine a legal thriller with a heartbreaking rendition of ALS’ devastation. This contrast makes Personal Injuries a deeply memorable read.
(Photo of Tony Judt by John R. Rifkin/The Penguin Press.)