ALS sufferer chooses life

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ALS sufferer Judy Patterson leaves for an afternoon walk with her support worker Colleen Hotricano, while her husband Ron watches from the garage. (COLE BREILAND / WINNIPEG FREE PRESS) Photo Store

Judy Patterson knows Lou Gehrig's disease will eventually end her life. But she's not allowing the debilitating effects of the disease to kill her spirit.

Fortified by a strong Christian faith, supported by her family and nurtured by members of her Pentecostal church, the Winnipeg woman believes it is wrong to take her own life, no matter how her illness proceeds.

"The way I look at it is I've been blessed," the grandmother of eight says in a strong voice, unaffected by four years of suffering from amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

"If you're going to accept the blessings, you have to accept the curses."

When she was first diagnosed with ALS, a progressive neuromuscular disease that affects voluntary muscle movement, Patterson immediately thought of Sue Rodriguez, who fought for the right to die by physician-assisted suicide nearly two decades ago. The Supreme Court of Canada ruled in 1994 that the B.C. woman could not have an assisted suicide.

She later died from an illegal assisted suicide.

In recent weeks, as another B.C. woman afflicted with ALS has won the right to assisted suicide, Patterson has spoken out against the ruling.

"I thought 'here we go again.' I remember Sue Rodriguez and her fight," she says of the right-to-die case brought to the B.C. Supreme Court by Gloria Taylor.

"It's too slippery a slope for me to put this into law."

On June 15, Justice Lynn Smith ruled Canada's ban on physician-assisted suicide infringes on the rights of disabled people and Taylor could be allowed to choose when she dies.

Like Patterson, Taylor has limited movement, uses a wheelchair and has a strong Christian faith.

But they differ in the interpretation of that faith. Taylor, a member of the United Church of Canada, has been quoted as saying she believes God doesn't want her to suffer unnecessarily from ALS, and most opposition to assisted suicide would be from conservative Christians.

Not surprisingly, the minister of Patterson's church is opposed to the ruling and the idea of assisted suicide.

"The taking of a life would be seen as a negative," says Rev. Scott Bullerwell of Immanuel Pentecostal Church.

"We value life no matter what the challenges."

For Patterson, taking her own life is clearly a sin.

"If you're a Christian and you read the Bible and you accept it as God's word, then you should follow it," says Patterson, who won't reveal her age but acknowledges she's been married for nearly 49 years.

"That means obedience. It means Thy will be done, not mine."

She believes God's will for her has unfolded as her illness has progressed. Now completely immobile, her head kept up by a neck brace, Patterson can't move her hands and can only move from her wheelchair to the washroom or bed with the aid of a motorized lift installed in her bedroom.

"When you're helpless, anyone can do anything to you. I have no defence," she says.

"You're dependent on people to do the right thing."

Patterson's husband, Ron, has been trying to do the right thing since her diagnosis. Aided by home-care workers, the retired business owner looks after Patterson in their bungalow-style condominium in Linden Woods. He took over the housekeeping duties as her disease progressed.

"It was tough at first but we've grown together with it," says the soft-spoken Ron Patterson.

Although she's unable to hold her infant grandchild or tend to her personal needs, Patterson refuses to see her life as negative or worthless. Instead, she says dealing with ALS has strengthened her faith.

"This is a blessing in that it brings you nearer to God, that you might not have taken the time for," she says.

"It's very intimate, it's very peaceful."

A month ago, Patterson spoke about her journey with ALS at a Sunday morning service, relying on her considerable inner strength for her 10-minute speech, which drew applause -- and a few tears -- from the congregation of 400, Bullerwell says.

"Physically, she's limited, but there are no boundaries for her emotionally or no boundaries for her spiritually," he says.

"She still has the capacity to be loved."

And she still has the capacity to inspire others, adds Ron Patterson, who is moved by the warm response his wife gets wherever she goes.

"There's always a crowd around her. She's never alone," he says of the people who surround his wife at church services.

For Judy Patterson, ALS may shorten her life, but she believes it won't diminish it. She won't be the one to decide when her life ends and until it does, she plans on living in each and every moment she has left.

"I'd just rather focus on enjoying the now, the present, my grandchildren, my friends."

brenda@suderman.com

Republished from the Winnipeg Free Press print edition July 7, 2012 j13