One Foot Out of the Grave

Local comedian keeps outlook positive despite fatal brain disease

By Holly Lake, Ottawa Sun

Ken Godmere only has half an hour before the amusement park closes.  Does he choose his two favourite rides and run to get in line?  Or does he sit in the grass with his family and watch others scramble to get a few final turns on the ferris wheel?

It doesn't really matter. Godmere's been there all day, the weather has been beautiful and he's worn the right amount of sunblock. The park might be closing soon, but it doesn't take away from the wonderful day he's had. The ending of it doesn't kill the day for him. He's made the most of it.

"That's where I am," says the man known to his friends as Mr. Metaphor. "The park will be closing in half an hour."

Godmere doesn't know when the park that is his life will be closing, but since March he's known it will be much sooner than he thought. The best estimate is about a year.

He's been diagnosed with Creutzfeldt-Jakob disease (CJD), a rare, degenerative and fatal brain ailment. Onset usually occurs later in life, around age 60, with 90% of patients dying within a year.

Godmere is only 40. His first symptoms came last summer when he developed problems with executive processes and started forgetting things. One day, he got lost driving home.

With CJD, diagnosis is not straightforward. It's a long process of testing and elimination. The Friday before last Christmas, Godmere's neurologist had narrowed the possibilities down to a short list of incurables. CJD was on the list, but Godmere doesn't remember what else was. There was still a chance it could be a tumour. That was the good news. Because cancer is more identifiable and removable, Godmere says, "There was still that window of hope."

In the new year, doctors tested his spinal fluid and by March they were 98% sure they were dealing with CJD.

"Technically, I will be diagnosed upon autopsy," he says.

These days the well-known local comedian, director and philanthropist gets tongue-tied at times and often struggles to retrieve the right word.

"This is so unlike me. I'm usually a great linguist," he says with a grin. "But nothing is where I put it in my brain. There's a short-circuit."

He admits his improv skills helped him hide that something was wrong. Now they help him deal with it.

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There are several types of CJD, including sporadic, familial and variant, which is similar to mad cow disease. Godmere doesn't know what type he has and initially didn't want to know if it was familial in order to protect his family from the worry. He's since changed his mind and will have the results of the genetic testing later this month.

The disease affects one in a million and leads to pronounced mental deterioration, blindness and possibly a coma. Godmere's was found early, but that won't help him at all.

"It's just a glide, all the way down," he says.

What's striking about him is the sense of peace that surrounds him. Godmere isn't mad his life will be cut short.

"The way I look at it, something causes death every day. But it's not about how you die, it's about how you live. And I've had more life in the 16 years I've known my wife than most people seek," he says. "I'll always be satisfied and never be finished. I'm not one of those people who are never satisfied and always trying to be finished. I can still do more, but I already have enough."

He's always been one to stop at the roses, but has never been satisfied to just smell them. He analyzes where they might look better and if they could use more lighting. Godmere does in one minute what others do in 10 and suspects he may have always known he'd die early.

"Maybe that's why I've crammed so much into everything. Now I have to cram the next 40 years of my life into one."

And with that comes some sadness. Earlier this year he went to his 14-year-old daughter's annual father-daughter dance at school.

"I told her she owed me at least three dances. One for the dance, one for her graduation and one for her wedding."

They had far more than three and he "cried like a baby."

"That's one of the things that's going to be hardest for me," Godmere says emotionally, as he blows his daughter Emma a kiss. "But I don't think it will be as hard now because we got to dance."

His daughter has since told him she, her nine-year-old brother Andrew, and her mother will be okay when he's gone.

"That was the most wonderful thing she could say to me because that was my biggest fear," Godmere says.

As a comedian, his sense of humour remains. And in a weird way, Godmere says he's fortunate to know what time he has left so he can focus on living it.

"People look at me like I have one foot in the grave. I don't. I'm not dying yet. I know I will, but I'm not dying now. I'm not my brain. That's not all there is to me."

True to his Mr. Metaphor nickname, he says his doctors are like weather forecasters who have predicted a storm. While it's cloudy, it's not yet raining.

"Do I pick up my picnic now? I don't want to. I don't want to ruin it for anyone else," he says.

He believes it's interesting that he has this disease and views knowing what's in store as a rare gift.

"I don't have to fight it. It's not going to be painful. It's a very simple disease. I get to simplify my life gently."

There are no treatment decisions to make because there is no treatment. Godmere won't have to decide if he'll use his time battling for a few last breaths. This is not a fight.

"It's not false bravery. I just won't actively be here when I go, so it's easy to laugh," he says. "I'm not fearing my last breath because I know it will be okay. I truly know that."

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On June 20 and 23, friends and colleagues of Godmere will gather to celebrate his life at Baldapalooza -- a tribute to his bald head, which has saved him hundreds of dollars in shampoo. Godmere, who hates for anything to be all about him, says it's not a mopefest or funeral.

"It's a celebration of Ken, but Ken likes to celebrate performing arts, gatherings, charities," he says.

Baldapalooza co-founder Debbie Ng says it's a chance to give back to Godmere and let him know the community appreciates all he's done through comedy and charity.

Over the years, Godmere's given many people a stage. He's produced at Second City in Toronto and six years ago opened his own improv club in Ottawa -- The iNSTiTUTion.

Baldapalooza will establish a legacy for the club, which may be handed over to a non-profit organization, to allow it to thrive when he's gone, Ng says.

"He wants to see other people grow and to get together and showcase their talent. He wants to give them a stage."

As Godmere puts it: He wants his energy to keep going without it having to be about him. "It's a fire to spread."

For more information, visit www.baldapalooza.com.

holly.lake@ott.sunpub.com