May 22, 2008
Wednesday with Ben
A few Wednesdays ago, I closed my office door, pulled down my blinds, popped a DVD into my computer and prepared to cry.
I was screening “Indestructible,” a documentary by Ben Byer about his battle with ALS.
ALS, a.k.a. Lou Gehrig’s Disease, a.k.a. amyotrophic lateral sclerosis, is a degenerative nerve disease that weakens, debilitates, paralyzes and then kills its victims, 90 percent of them within five years of diagnosis. It doesn’t affect the capacity to think or feel, so those afflicted get to stay wide awake and aware for the ride.
That’s what Ben Byer gets to do. Byer was a handsome, strapping 31-year-old whose life—seen in the lead credits in a series of photo album snapshots—included worldwide travel, art, women, friends, food and everything a young actor/writer/director could want short of a feature film deal.
We meet him after diagnosis, after he has resolved to document his journey on film. The film, he wrote later, “is an attempt to understand and accept the reality of a mysterious and deadly disease that has brought science to its knees, an illness that is a paradigm for life’s ultimate challenges…. I wanted to know, perhaps naively, ‘What does it all mean?’”
I watched Byer’s film—a fantastic, beautifully photographed (by Roko Belic) and much-feted piece of work —awaiting the answer to that question, the existential jackpot, as it were.
I wasn’t hopeful—I’ve waited before. My cousin, Lloyd Ehrenberg, died of ALS in 1994 at the age of 36. Lloyd was my cousin and best friend. We shared the same way of looking at the world, the same ambitions, the same appetites and sense of humor. Then this disease came like a line out of the Yom Kippur liturgy—who shall live and who shall die—and drew a sharp line between us, separating us forever.
But before that separation, I watched the disease have its way with Lloyd. He moved into the apartment next to ours, and day by day we would watch him suffer and fight, and every night ask ourselves, “What does it all mean?”
So now you understand what leaves so many visitors to my office perplexed: my small collection of books and films about Jews with ALS.
There’s a VHS copy of “Three Sisters,” the HBO special about the L.A.-based Estess family and their struggle with the disease. There’s “Journeys With ALS,” edited by David Feigenbaum; director Steven Ascher’s “So Much So Fast”; and, of course, “Tuesdays With Morrie,” Mitch Albom’s mega-best seller about his beloved elderly professor, Morrie Schwartz. “Tuesdays With Morrie”? I used to laugh at that sentimental title. For those who lose loved ones to this disease, or any terminal illness, it’s more like, “Every Friggin’ Day With Lloyd.”
Byer’s film is the first I’ve seen to truly capture the isolation, fear, hope, hopelessness and slow wasting away that define ALS and similar diseases. He does it with imagination and gusto—the tears came because the guy looks and acts so much like Lloyd.
I have a half-baked theory that ALS is a disease with a sense of irony. It does not, according to ALS Association’s David Moses, affect Jews in any greater numbers, like breast cancer. But it does seem to attack an inordinate number of talented people and deprive them of every ability to express their talent. In the end, these patients literally only have their wits about them. One of them, a brilliant young Israeli with ALS named Avi Kremer, founded Prize4Life, which offers a $1 million prize in order to accelerate ALS research.
Byer’s forte is not the science but the searching. He travels to Greece to meet patients who share his search for alternative treatments. He goes to China to try one doctor’s quacky cure. In Jamaica, he smokes joints the size of knockwursts to lessen the symptoms. In America, he meets with leading lights, including Dr. Oliver Sacks, to gain insight and wisdom into a disease that affects 30,000 Americans.
Finally, he travels to Israel to see whether the faith he left behind after his bar mitzvah had anything to offer.
In Jerusalem, Byer visits Rabbi Daniel Gordis. Gordis, who served as head of the Ziegler School of Rabbinic Studies here in Los Angeles, now lives in Jerusalem, where he runs the Shalem Center and writes about Israeli life and politics. Byer, who by this point in the movie can barely walk and is slurring his words almost beyond understanding, confronts the rabbi with a much more difficult subject: “What does it all mean?”
Gordis’ tone is compassionate but direct.
“It’s not humanly caused,” he says. “It’s one decent person suffering in a way he doesn’t deserve. How do you make sense of that? At the end of the day, I don’t believe in a God who gets involved in the activities of individual human beings.”
“This isn’t about a person who has ALS,” Gordis continues. “It’s about people coming to your aid, people calling, people reaching out. I think that’s a religious act. It doesn’t increase your mobility, and it doesn’t set back your disease. But I think it gives life extraordinary meaning. I’m not saying that’s why it happened. I’m saying in the face of the fact that it did happen, then you have really made your wrestling with this disease a religious moment. You walked away from Judaism. Well, now you’ve walked back in. You’re in the heart of religious engagement.”
That is faith’s best answer to the illogic of suffering. Almost 15 years after Lloyd died, after 113 minutes of a heart-wrenching documentary, I realize how unsatisfying an answer it is, and how it’s the best one we’ll ever get.