Comic Bob Smith stands up to his disease

TORONTO – It’s been said the best comedy is rooted in truth. For stand-up comic Bob Smith, this meant entertaining audiences with stories about being a gay man – even though it likely kept him from a star-making run on a sitcom.

“I really didn’t care at the time. I achieved the major goals of all comedians, appearing on The Tonight Show and my own HBO special,” says Smith.

Today, Smith is dealing with the limitations of another truth in his life.

The 54-year-old is living with amyotrophic lateral sclerosis – better known as ALS – a debilitating disease the causes progressive weakness, muscle atrophy, and difficulty speaking, swallowing and breathing.

Smith was diagnosed in April 2007, about a year after the muscles on the back of his right arm stated twitching.

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“I went to a neurologist to figure out what was going on,” recalls Smith via email from New York City, where he lives with his partner Michael.

Upon hearing he had ALS, Smith – naturally – cracked a joke.

“I said, ‘Lou Gehrig’s disease? I don’t even like baseball.’”

He immediately shared the diagnosis with friends and family (“Coming out with a terminal illness is easier than coming out as gay,” he jokes) who responded with sorrow “and lots of love.”

Smith says there is nothing wrong with making light of his situation.

“It’s OK for anyone to joke about their horrible struggles and my ALS is a horrible struggle,” he says. “Most of my closest friends are either comedians or writers and we crack jokes about my condition all the time. It’s part of my belief that comedy isn’t frivolous but a vital force in our lives.”

Smith didn’t realize how living with ALS would affect his stand-up career until later that year during a show in Boston.

“People thought I was drunk,” he recalls. “I’ve never drank before any performance and realized my ALS had slurred my voice. After that, I always prefaced my sets with an announcement that I hadn’t been drinking but had a neurological problem.”

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Eventually, Smith knew his days of telling jokes to live audiences were over. “It was very hard to stop doing standup,” he admits. “I had been performing for 34 years and loved it. Plus, I was good at it.”

But the talent and sense of humour that sustained Smith all those years remains intact. The former MAD TV writer and author of several books (Openly Bob, Way to Go, Smith) has written two comic novels and several essays since his diagnosis.

“It’s made me a better writer because I’m fearless at trying to mix the unfunny with the funny,” he says.

Smith’s acclaimed novel Remembrance of Things I Forgot was based upon his sister’s suicide. The Third Actor, set in Ancient Greece, is a historically accurate novel that satirizes contemporary culture.

He also wanted to write about living with ALS but needed to make it palatable to a broad audience.

“It’s actually an essay about how I’ve always loved nature,” Smith explains. “I thought I could discuss my illness by making it part of a bigger topic.”

Since my diagnosis of ALS, I feel a particular kinship with Thoreau. 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. It took a life threatening illness to make me see that the reason most of us love the natural world is that it’s a visual and vocal echo that we’re alive. 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. 

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Born and raised across the lake from Toronto in Buffalo to a Canadian father (he’s descended from Henry Smith, namesake of the Henry of Pelham winery in St. Catharine’s), Smith travels north of the border regularly to visit friends, including comedian Elvira Kurt, whose children were conceived with Smith’s help. (“My ALS isn’t the genetically-transmitted form so there’s no risk to the kids,” he says.)

One of those longtime friends is Maggie Cassella, a comic and former TV personality who now co-owns The Flying Beaver Pubaret in Toronto’s Cabbagetown neighbourhood.

“He is one of the funniest, kindest and most honest people I know,” says Cassella. “He is a brilliant writer and truly one of a kind. I adore the guy.”

Smith was a favourite at Cassella’s We’re Funny That Way comedy festival and has been on stage at Montreal’s Just For Laughs festival.

“I love Canadian audiences. Canadians understand American culture but they’re not Americans,” says Smith. “Canada has produced so many great comedians [because] you’re outsiders to American culture. Most comedians are Jewish, African American, Latino, gay or women – all of them looking at our culture from an outsider’s point of view.”

Smith says the progression of his ALS has been slow (“If you’re going to procrastinate, do it when you get a terminal diagnosis,” he quips) and he remains fairly stable.

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“I’m not in a wheelchair or dead. Most ALS patients die two to five years after diagnosis. I’m also not on anti-depressants,” he says.

Perhaps it’s true that laughter is the best medicine.

“Laughter is a good daily vitamin but love is the best medicine,” Smith counters. “I feel loved by Michael, loved by family and friends – and even strangers who see me struggling to swipe my subway card and offer to help.”

Smith says there is a lot of promising research going on into a cure for ALS.

“I’m optimistic that I’ll beat this.”