Hope lives in Elizabeth Grandbois


Concert organizer makes the most of her extra time

November 12, 2008
Mary Nolan
The Hamilton Spectator

It came like an intruder in the night, smashing its way into Elizabeth Grandbois' life.

It intended to steal everything she had before choking the very breath out of her, and creeping away to find its next victim.

But if it expected her to be an easy target, it was dead wrong.

Grandbois knows that amyotrophic lateral sclerosis is going to get her eventually, but she's not cowering in the basement in terror.

Since the diagnosis of ALS 11 years ago and a prognosis of only two to five years, the 56-year-old Burlington woman has learned to infuriate the fatal neurological disease by basically laughing in its face or, even more humiliating, ignoring it altogether while turning to more important issues.

The disease eventually found her mobility and trashed it, forcing her into a wheelchair. But it hasn't yet been able to discover where she keeps her cache of humour, humility, tenacity and optimism.

Fear of her own death is not something that plays much of a role in Grandbois' life anymore, not since so many others have preceded her down that road. Everybody she knew with ALS is gone. In addition, she lost her cherished father in 2005 and, within the year, her bright, athletic 25-year-old son.

"I feel that if they can go, death is an OK thing. Wherever their spirits are, it has to be OK," she says thoughtfully. "The ALS has no importance to me because of the trials I've already had."

Within the first few years of the grim diagnosis, Grandbois had written a book, done a documentary and staged the first of six Elizabeth's Concerts of Hope, which have raised more than $2.5 million for ALS awareness.

"Everybody has a story to tell, but there was an urgency to tell mine, an urgency to create a legacy," says Grandbois, a former emergency room nurse.

"I was sitting in the bathtub one day wondering why nobody was talking about this disease, and I realized it's because we deteriorate so rapidly and die so quickly that there's nobody left to talk about it.

"So I did all these things and then I didn't die, and then I still didn't die. Sometimes I think if I don't deteriorate or die soon, people are going to think I'm just faking."

She may joke about it, but she knows what she is facing. She describes her future with a calm, articulate voice that belies the horrors awaiting her.

"Eventually, when I need it, there'll be morphine," she says calmly. "It's going to be nursing care, feeding tubes, catheters, enemas, morphine, more morphine. It's so scary to know that all I'll be able to do is move my eyes."

A beautiful, bright-eyed woman of remarkable serenity, Grandbois tries to be gracious when well-intentioned people frequently call her amazing, inspiring and heroic. But she insists she is just an ordinary woman who, having been dealt an extraordinarily bad hand, has also had the good fortune of beating the odds and still being alive.

They were such a normal family, the Grandbois. Mom, the nurse, dad an engineer, three kids, always a dog, Mocha the cat, all living comfortably in suburbia.

So much has changed, although the old cat is still around, the same cat who once managed to get itself locked in an upstairs bedroom when no one was expected home for hours.

Grandbois -- who does not cater to her illness, even stubbornly refusing to wear her medical alarm when it doesn't match her outfit -- set out on a rescue mission that ended with her trapped on the stairs, her rubbery legs refusing to take her any higher or let her descend.

If her younger son had not come home to retrieve something he'd forgotten, she might still be there, Grandbois says with a gentle laugh that comes often and easily.

"I dealt with death so often in my nursing career, but I just didn't understand how it feels when someone tells you you're going to die," she says. "It was so terrifying. It took me about a year and a half to come to terms with death."

She doesn't mind talking about the fact that she should already be dead. Neither she nor her doctors can figure out why she isn't.

Is it because of the sunny disposition she says she inherited? The potent drug cocktail she took for three years before deciding she'd pumped enough toxins into her body? Or the work that is still to be done for ALS?

No, says Grandbois.

"I've always been a happy, smiling, somewhat sweet-natured person," she says, "so it's not about positive attitude. I honestly believe it's the luck of the draw. I'm rare and atypical and one of the lucky ones who gets to live a little longer. But I believe that you take that luck -- don't let it just sit there -- and do something with it. It's like investing money and watching it grow."

All she knows for sure is that she's here, now, with an astounding network of friends and supporters who bask in her light and energy, and a family who has promised to be there for her until the very end. She can still speak easily, manoeuvre the wheelchair around her house, pour a cup of tea and stroke the bushy coat of her two-year-old silver shepherd, Kira.

And as corny as it sounds, she considers it a privilege, not just to live, but to learn to live with a disability.

"No one is exempt from suffering," Grandbois says. "We deny suffering, but it is innate to all of us. It is one of the principles of human existence."

And if there is much to learn from suffering, there is also much to teach.

"Sad songs and sorrow are a nice blanket," says Grandbois. "It's easy to fall into self-pity, it's very comfortable, but it's not healthy.

"You influence people by the way you behave. You go out there and practise what you preach. You suppress the sense of your own importance to leave room for everybody else."

Grandbois' considerable energies are currently directed at the next Elizabeth's Concert of Hope, which will be held on Saturday to launch her Mobility Tour.

Having discovered the impenetrable barriers facing people with impaired mobility, she has created a project that will help organizations across Canada to plan fundraising concerts for improved mobility and accessibility in their own communities.

"We all have so many expectations in life that we miss the pleasure of the moment," Grandbois says. "No one has control over the moment and nothing stays the same.

"So when it's good, enjoy it."

mnolan@thespec.com

http://www.thespec.com/News/Local/article/465169