‘Lou Gehrig’s Disease? I Don’t Even Like Baseball.’ Comic Bob Smith on Living With ALS
The Daily Beast
October 17, 2016
Bob Smith calls himself and his best friends “the Nature Boys.” Michael Hart, Eddie Sarfaty, John Arnold and Smith’s partner Michael Zam are gay, but should define themselves as bisexual, Smith writes in his latest, beautifully-written book, Treehab: Tales From My Natural, Wild Life, because “we’ve each had a longer relationship with Mother Nature than any other guy.”
Smith, a comedian whose wit, empathy and eye for detail and beauty is evident on every page of Treehab, balances rich evocations of his love of nature, wildlife and the stunning wilderness of Alaska, with stories of his sexuality, his children, humor, and—most powerfully—the hell of living, now for almost 10 years, with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), which, as the ALS Association defines it, is the progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
Smith writes of the moment in May 2006 when Sarfaty noticed a muscle twitching in the back of Smith’s arm, an early symptom of ALS. So began a battery of medical tests.
After he performed at a Human Rights Campaign event that autumn, his agent called to ask if he had been drunk on stage: he had slurred his words. Smith didn’t drink before performing. The slurring was because he had the bulbar variant of ALS that first preys upon the muscles of the tongue and throat.
Upon receiving the diagnosis in 2007 at Columbia-Presbyterian Hospital, Smith, ever the comic, thought, “Lou Gehrig’s Disease? I don’t even like baseball!”
Smith eventually stopped performing in 2010, after a gig at an East Village comedy club.
“I hadn’t performed for several months and immediately noticed how difficult it was to pronounce my jokes, lines I’d done hundreds of times,” he writes. “Jokes that always killed were garnering looks of incomprehension.
I apologized and repeated a few lines again…After the show, I apologized to the host, who graciously said there was nothing to apologize for. I was in a state of shock.”
He writes of his doctor saying to him, nervously, “It’s a really rare disease,” to which Smith responds, “So it’s like winning the disease lottery?”
Smith, 55, has been hospitalized for more than six months after a bout of pneumonia. ALS ravages the body, and so it has with all its insidious, despicable might with Smith.
Slowly, his body is closing down. He cannot speak. He cannot walk. He now cannot use his hands to write. His mind, however, is as it always has been: he understands everything, he just cannot respond to what is said to him. ALS is an imprisoning, living hell.
“Navigating a treacherous disease requires the same skills as a hiker,” Smith writes. “With a life-threatening illness, you have to treat the Angel of Death like he’s a skunk. Avoid getting too close, or you’ll be stinking like a rotting corpse.
“Your life has changed direction, and you could easily get lost dealing only with your health, which would be like strolling through a redwood forest dwelling on filing your taxes. You need to be present in your life—not contemplating your afterlife.”
Smith was dozing when Zam, his devoted partner, and I entered his hospital room on a recent weekday afternoon. Here he watches TV to stay in touch with the world (as well as the wonders of the National Geographic Channel his latest crush is ABC weatherman Rob Marciano).
How ALS destroys the body is visible when facing its toll on the tall, handsome Smith, the first openly gay comedian to appear on the Tonight Show, and one of the first openly gay comics to have their own HBO special.
Because of the diminishment of his physical capabilities, this is no ordinary interview: Smith raises a foot and spells out his answers, as Zam holds a see-through plastic board with the letters of the alphabet in small, clustered groups, with ‘yes’ and ‘no’ as two boxed options of their own.
If spoken conversation is impossible, conveying his thoughts and words this way is also obviously tiring, and underscores how viciously ALS has decimated Smith’s physical life.
Smith painstakingly spells out words as Zam solicitously checks that he is as alright as possible, rearranging pillows, and wiping gunk away from his eyes. (The longer responses in this article were crafted by Smith and Zam together.)
From his hospital bed, with occasional decoding from Zam, Smith conveyed to me that it is the people of Alaska he loves most about that state.
It was his father who introduced him to nature, Smith said, and the book conveys his informed fascination in the colors of flowers and calls of birds; the beauty of glaciers and wilderness; open skies and a heart-stopping moment when a humpback whale appears nearby (whales are his favorite animal, and redwoods his favorite natural object). Nature, Smith said, meant comfort to him, rather than stimulation.
Smith’s love of animals extends to the domestic, too: he and Zam, a scriptwriter and NYU lecturer, have devotedly parented two dogs.
Bozzie was a rescue animal, previously housed in a laboratory, and understandably nervous. After Bozzie died, the couple took in Toby, a much-more languorous beagle-basset, and a rescue like Bozzie, though not from a lab. (Toby’s gorgeous, pendulous ears are their own wonder of the world.)
“Dogs are the only New Yorkers who aren’t in a hurry,” writes Smith, whose home with Zam is in Greenwich Village. “Schnauzers schlep, poodles prance, even manic breeds like Jack Russell terriers traipse through Manhattan. Instead of rushing everywhere and trying to piddle on four trees at once, dogs subscribe to the canine philosophy of life: take time to sniff the asses.”
Growing up in Buffalo, Smith was a quiet boy with an occasionally-ill mother and alcoholic father, and soon found the life-saving and enhancing qualities of humor: he was a fan of Evelyn Waugh, Joe Orton, and Oscar Wilde.
There is a lovely passage in the book, where the young Smith alights upon a dusty shop in Buffalo, which stocks rocks and minerals: he is enthralled by the magical curios within. He grew up wanting to be a park ranger—Allegany State Park, preferably. It was an English teacher in high school that said he was funny and should be a comedian.
In a later email, Smith said: “My mom was clinically depressed and she was briefly hospitalized. My father, who was a state trooper, worked all the time, so my two older brothers, sister and I would stay with my Aunt Anne, who I really loved. She encouraged me to read and to draw. She paid for my first art classes, and she would take me to museums. Buffalo has great museums.
“That’s where I first saw the work of [the artist and writer] Marsden Hartley, who I still love today. He painted nature and shirtless men, even then those were two of my favorite things. I wasn’t surprised when I found he out he had been gay.”
His brothers fought a lot with each other. “My mom and sister also fought a lot. I would go up to my room and read.”
Smith’s father would take him to his favorite nature spots in and around Buffalo. “My siblings didn’t like to go as much as I did. He often seemed worried or preoccupied, so I would try to make him laugh. When he did, it made me really happy. That’s probably when I realized how much comedy meant to me. I didn’t expect to do it for a career, however. That came later.”
Two of Smith’s biggest comedy inspirations were Woody Allen and Lily Tomlin, “two of the most brilliant comedy writers, and—I know this may sound funny for a guy as white as I am—Richard Pryor. He was fearless. I think his comedy helped me when I went on stage as an open gay man when no one else was doing it.”
With Jaffe Cohen and Danny McWilliams, Smith formed the troupe Funny Gay Males in the late 1980s, and which formed the springboard to his solo success.
Cohen is now Zam’s writing partner; the two just sold their script, Best Actress, to Ryan Murphy, who is using it as the basis for his latest FX show, Feud, about the relationship between Joan Crawford and Bette Davis. (The actresses will be played, respectively, by Jessica Lange and Susan Sarandon.)
Mid-interview, we took a break to watch Smith appearing on the Craig Kilborne-hosted Late, Late Show, just after he had published his award-winning book, Way To Go, Smith, the second slice of memoir, following Openly Bob (1997).
Smith, relating how he had grown up in a conservative household, described his coming out during his family’s Thanksgiving meal. “Mom, would you please pass the gravy to a homosexual.” (Pause) “She passed it to my father.”
Are you seeing a psychiatrist?” he says his mother asked. “No, I’m seeing a lieutenant in the Navy.”
It shows the pace of cultural change that an out-gay comic on TV was such a significant moment not so long ago.
“When I got ‘The Tonight Show with Jay Leno,’ I knew this was a big moment,” Smith said. “I was really nervous before I went out onto the stage. I didn’t know what to expect. I had played before primarily straight audiences before, but this was different. But once I got my first laugh, I knew things were going to be all right.”
Last year, Leno contacted Smith.
“We talked—well, he talked and my fried Eddie translated for me,” Smith said. “He said he thought about me and wondered how I was doing. I still don’t know how he knew I had ALS; I guess he found me online. He told me how proud he was he got to be the first one to have me, as the first openly gay comic, on his show. And he said that wouldn’t have mattered if I had flopped, but, as he put it, I had killed. That meant a lot to me.”
Smith’s sister Carol committed suicide when she was 41. “She shot herself in the head, Smith recalled. “That day she called me three times. I invited her to come and visit me in LA. She was unhappy with her marriage and didn’t know what to do, but the real reason I believe she did it was because she also suffered from depression, only hers went undiagnosed. I really loved her.
“It helped bring my mother and I a little closer. I got her to laugh a few times and I know that really helped.”
In his partly autobiographical novel Remembrance of Things I Forgot (2011), part of the whizz-bang time-travel plot sees the lead character trying to prevent his sister’s suicide. (Smith is also the author of another novel, Selfish and Perverse, published in 2007.)
In the hospital, I asked how it was, living for almost 10 years with ALS, and Smith’s foot spelt out “Harrowing.”
How did he consider his mortality? He spelt out, “Anxiety.”
How was being in hospital for him? Smith spelt out, “Hell.”
Seeing people—particularly Sarfaty and his husband Court Stroud, the writer Christopher Bram, and Zam—meant the most to him, he said.
What did Smith feel for Zam, I asked. His foot spelt out, “Love.”
Zam smiled gently at Smith: “Bob and Michael sitting in a tree,” he sung softly.
I asked about Smith’s children. In the book, Smith wrote movingly about the joy of having Madeline and Xander, via sperm donation, with his friends Elvira Kurt and Chloe Brushwood Rose.
“He loves it,” said Zam of being a dad. “It means a lot to him. I always say to him, ‘The greatest thing you ever did was jerking off in a cup.’”
I asked Smith what he wanted most from the future, and he said for straight and gay men to get along with one another; the next novel he wants to write is about straight-gay friendship.
“Having ALS is hell,” Smith said later by email, “especially now that I’ve been stuck in the hospital for over six months. Now I’m on a respirator. I want to go back home, but I need skilled nursing care—and that is too expensive. Luckily I have Medicaid, but the bureaucracy is incredible. Michael and Eddie take care of all that stuff, and I know how hard that is.
“Though it’s hell, I still love being alive. I think of my kids, and I love seeing friends—all those I love.”
Smith cannot talk, “but I love to be read to, especially from my own books. I love hearing Treehab read aloud. As Michael says, ‘No one loves reading Bob Smith more than Bob Smith.’”
Later I asked Zam—who wrote the book for the award-winning 2010 off-Broadway musical adaptation of Dan Savage’s adoption memoir The Kid—to describe the experience of ALS for them as a couple.
“I’m not sure how to answer that question, because it’s been everything: challenging, frustrating, moving, oddly rewarding,” he wrote in an email. “It brought us closer together and sometimes, because I wasn’t going through the same thing he was, more separate.”
He and Smith always made long-term plans, “yet because we were also probably more aware of time ticking on, [we] did [our] best not to say no to things [we] really wanted to do, especially in regards to travel opportunities,” Zam said.
“I was often frustrated that we didn’t have more money I could take off from work so we could spend more time traveling, but we didn’t. After I sold a screenplay, I used a chunk of the money I would’ve normally saved so we could go to Patagonia and Antarctica.”
Zam also thinks the last few years would have been a little easier if he and Smith had been able to afford home care or lived in a place that was larger. “Also, if we had an elevator. If we had, Bob wouldn’t have had to move out when he couldn’t manage the stairs.”
Smith, Zam said, writes all the time, “and he’s doing some of his best writing ever, so I never had an excuse not to work. My writing career definitely heated up these past years, so his work ethic has been a great help.
“Trying to balance such intense care-taking and the greater pressure I had to produce so much work, and teach a full load every semester, is hard, but as hard as this has been—and it’s been very fucking hard a lot of time—I never considered leaving Bob. Sure, there were many days where, as in any relationship, I thought that was exactly what I wanted to do, but I never would have done it.”
Humor and friendship are the most vital medicines and palliatives for both men. In Treehab, Smith writes that many of his friends, like Sarfaty and Judy Gold, are comics, who make each other laugh harder offstage than on.
The morning after Carol committed suicide, for example, Gold called him to ask he was doing. Smith broke down crying uncontrollably. Gold said: “Bob, don’t you think you’re overreacting? It’s been almost twenty-four hours.”
“I didn’t stop crying,” Smith writes, “but I did laugh. I’ve known Judy for thirty years and our friendship has no boundaries.”
In Treehab, Smith insists he focuses on the positive: his suffering is best alleviated talking to friends and family, not prayer to God, he writes.
As well as the Nature Boys, there are his “New York drinking, talking, writing and laughing buddies,” who are all literary-adjacent: Patrick Ryan, David McConnell, Don Weise (full disclosure: this author’s editor for his book, In Bed With Gore Vidal: Hustlers, Hollywood, and The Private Life of An American Master), Michael Carroll, and Chris Shirley.
And there is always nature: it is supremely engaging to read of the fun Smith has with various sexy men he meets and enjoys trekking in Alaska with, or alighting upon an array of starfish, or the shadowy figures of hammerhead sharks he and Zam see in the Galápagos Islands, and the many sky-dwelling creatures that this self-confessed “bird nerd” delights in looking up to see.
At the end of Treehab, Smith imagines encountering one of his heroes, Henry David Thoreau, at Walden Pond, which Walden devoted a book to.
Since his ALS diagnosis, Thoreau has been much on Smith’s mind: “He enjoyed walking through the woods while wolf packs of tuberculosis bacteria ripped out his lungs, and I dreamily hike among pine trees while my own body becomes a graveyard of dead-and-buried motor neurons.”
Both men imagine their respective life-threatening illnesses in terms of being trees under relentless assault by a woodcutter. (Smith wishes the woodcutter would quit to kiss him.)
Thoreau tells him since his death he has witnessed Man’s various assaults on the natural world; Smith notes Thoreau “was fierce about his love of nature, position to slavery, and not having the words chiseled on your tombstone be more fascinating than your life.”
Smith tells Thoreau that his father, in his sorties into nature with the young Smith, had hoped it would turn his son straight. He mulls the pollution of the Buffalo he grew up in, and the theories that ALS is caused by stress and environmental factors.
The men chat about the trilliums that delighted them both on Goat Island, the state park that separates the American Falls and Horseshoe Falls.
Mother Nature, like Smith, is fighting for her life too, says Thoreau, who when he disappears, leaves Smith aware of a white-breasted nuthatch skittering “like a feathered mouse” on a nearby oak, as “the faint scent of pine branch armpits” fills the air,” the trees “dappled with adorable flecks of light reflected from the water.”
“It took a life-threatening illness to make me see that the reason most of us love the natural world is because it’s a visual and vocal echo that we’re alive,” writes Smith.
“Every mosquito bite is a painful pat on the back that we’re still fresh enough to be lunch. We focus on the green in a forest, while gently ignoring that every fallen leaf is a brown Post-it note from Mother Nature that someday we’ll all be dead.”
That is as true as Smith’s own resilience and belief in life and laughter. He he has spent his life, he says, believing he can do “almost anything: move to New York, become a successful stand-up comic, write books, snag more than one handsome boyfriend. So surviving a devastating incurable disease seems like another daunting challenge that I have to overcome.”
Bob Smith aims to do just that, with wit, honesty, and bravery. I think he would rather you not cry or feel sadness or pity for him, but instead to smile and laugh, and make him smile and laugh, as hard as possible; and to also look around you and look up, and see, find, and delight in whatever beauty you can.