JULIE & MIKE, A LOVE STORY
Mike and Julie Labelle have been a team pretty much since the day they met 25 years ago. Julie has since lost the remaining 20 per cent of her vision and Mike has now been diagnosed with amyotrophic lateral sclerosis.
This is a story with a bad ending.
It seems only fair to warn you. When you get to the part where there should be the beautiful reward and the Golden Years, you’re not going to find it.
People familiar with this story are rather shattered by that. Those most shattered are going through what you might call a crisis of faith, what one person described as: “Total devastation. How can I believe in anything anymore, if this is how it ends for them?”
This is the story of Julie and Mike. That is how family and friends see them, and it is how you should see them. Not as a Julie. Not as a Mike. But as Julie and Mike, a couple that has been inseparable since the day they met.
Julie and Mike, who once thought they could overcome every obstacle life put in front of them. And nearly did.
FIRST SIGN OF TROUBLE
Julie Villeneuve was 21 and enrolled in the accounting program at St. Lawrence College, in Cornwall, when one day she dropped her pencil and couldn’t find it. She was left groping in shadows beneath her desk, wondering what just happened.
It was 1991 and within a week Julie was sitting in front of an optometrist, who diagnosed her with reverse retinitis pigmentosa. The doctor then looked at her curiously and said: “Have you not always had vision problems?”
She had. For as long as Julie could remember, there was a black ring in the centre of her world. She saw what was outside that black ring, and what was inside, and those were her sight lines. She compensated for the black ring by tilting her head, and had no problem passing the eye-chart tests of grade school, nor her driver’s test.
But in her first year at St. Lawrence College, the black ring started to close. To her surprise, the optometrist told Julie she was legally blind.
DESCENT INTO ADDICTION
That same year, also in Cornwall, Mike Labelle was living out the lines of a Tragically Hip song, the ones that go: “When it starts to fall apart, man, it really falls apart.”
In June of that year, Mike had been in a car accident. He was the passenger in a car driven by his best friend, Pat Brunet, which flipped and ended up in a creek near Lancaster. Mike was left with scratches on his back and face. Brunet was killed.
Mike was 24 and he handled his grief and guilt in a way that might not surprise you. He started drinking. Cocaine soon became a regular part of the drinking, as cocaine allowed Mike to drink all night, and before long that was his life. Lines and shots. Go to work. Pass out a few hours. Repeat.
In the autumn of 1992, at his employer’s urging, Mike checked into Beech Hill, an addictions rehab facility in New Hampshire. He did 30 days and returned to Cornwall clean, sober and completely unsure if he wanted to stay that way.
THEY MEET
In the summer of 1993, mutual friends thought Julie and Mike should meet, figuring they had much in common. If pressed on this, they would have been forced to admit it was a short list of similarities: Neither one drank.
But that was something and the friends, apparently not thinking it through much more than that, arranged the first date in a bar.
It was called Freddy’s, and Mike remembers walking in, looking at the woman his friends had been talking about, and thinking: “I wasn’t expecting this. She’s beautiful.”
He had been told of Julie’s vision impairment, but as he sat next to her that night, it was not something he noticed. Forgot about immediately. Even though once that night Julie asked him to lean forward and when Mike asked why she said: “So I can see your face.”
Julie’s vision had deteriorated so badly she could no longer see a person’s complete face. Only component parts. When Mike leaned back, Julie remembers thinking:
“He has beautiful eyes.”
STARTING A FAMILY
Julie and Mike were married in 1997. It was a large wedding, although not everyone in Mike’s family received an invitation. The ones excluded were the ones who once asked him: “Mike, you know she’s blind, right?”
When the couple told their families they wanted to have children, there was more disbelief. Julie and Mike gave this latest concern the same careful consideration they gave the first.
Their daughter, Ayla, was born in 1999. Today, Ayla is a first-year visual arts student at the University of Ottawa.
Getting married and starting a family gave Mike a purpose and drive he didn’t have before. It also gave him stability. A licensed machinist, he worked at Beavers Dental in Morrisburg for 28 years.
Total devastation. How can I believe in anything anymore, if this is how it ends for them?
He also became Julie’s primary caregiver. Mike cooked the meals and did the outdoor chores. In the morning, he would read the newspaper to his wife.
After work, he would affix braille labels to the appliances, so she would know which dial to touch; or build handrails, so she could guide herself around the house.
A lot of people thought they would never make it — a recovering addict as primary caregiver for a blind woman — but they did. Julie and Mike overcame every obstacle put in their way. Until the summer of 2016, when one last obstacle appeared.
It came disguised as a mattress, one they were trying to carry up a flight of stairs in their home. Except Mike couldn’t do it. He was too weak.
The diagnosis came 15 months later, after numerous visits to the Cornwall hospital and the Civic campus of The Ottawa Hospital, after blood tests and CAT-scans and EMG tests, and then, one day, they walked into a doctor’s office, and in a sad, far-awaysounding voice the doctor said: “At this moment, Mike, the leading contender for what you have is ALS.”
Mike already knew what that meant. Amyotrophic Lateral Sclerosis is a motor neurone disease that gradually paralyzes a person, until the day comes when they can no longer breath.
The life expectancy for someone diagnosed with ALS is two to five years.
Mike quit work last November, too weak to continue. There was a party for him at Beavers Dental, lots of tears, and then he went home. He is now on long-term disability, making half his former salary.
The ALS diagnosis was confirmed Feb. 4.
“I’m telling our friends not to feel too sorry for us,” says Julie. “Every person has challenges in life. ALS is Mike’s. Being blind is mine. To see them as the same challenge, I don’t know if that’s right.”
She is making an argument as to why God hasn’t, necessarily, given Julie and Mike more burdens than they can bear — why it just seems that way.
So what sort of story are you left with, when the right ending just up and walks out on you? When hard work, taking care of your family and picking yourself up off the ground gets a person two-to-five?
And what do you take away from such a story? Was it all some cruel joke? Did any of it matter? Perhaps — and it is just a suggestion, you may well walk away with something else — but perhaps you take away this: During lengthy interviews and two long photo shoots, Julie and Mike were caught crying only once. Not at the same time.
Julie cried when she was asked how she would take care of Mike, as his disease progressed, once he was in a wheelchair and using a feeding tube.
“I’ll find a way,” she said finally. “Mike needs me, and I’ll find a way to be there for him.”
Mike cried when he was asked if he would be able to hang onto his house, continue to make mortgage payments on half-salary and who knows how many medical expenses coming his way.
When he pulled himself together, he said: “This is Julie’s home. I have it all marked out for her. I’m going to find a way to make sure it’s still her home, even after I’m gone.”
They cried, in other words, for the other.
This is the story of Julie and Mike. You can take from it the simple, undeniable fact that it started as — and for the last 25 years has been — a love story.
I’m telling our friends not to feel too sorry for us. Every person has challenges in life.