Linda and John Gregoire find a new normal after he is diagnosed with ALS
Linda Gregoire is the sort of woman who looks at a slice of bread and notices a tiny air pocket that is shaped like a heart.
She lives by the word “hope”—which is spelled out on coffee mugs, signs, knickknacks, ornaments and other random objects throughout the Windham home she shares with her husband, John. Their van is known as the Hope Mobile, and they rescued a puppy in part because it was already named—you guessed it—Hope.
Hope is a statement of intent. And it’s a challenge to the reality of her life—her husband has amytrophic lateral sclerosis (ALS), or Lou Gehrig’s disease. Essentially, John’s still-sharp mind is stuck in a body that doesn’t work.
“John has survived so long,” Linda says, “that we see three to five patients who we know from our [nationwide] network on Facebook pass away every week.”
“I’ll be 61 in May,” says John—typing on his tablet reader. He was diagnosed in 2007.
“You sound so surprised!” Linda says, even though John’s “voice” has no inflection.
The Gregoires have been married since 1981. With their two sons they enjoyed an active life in Windham, halfway between lakes and ocean. They camped, fished and hiked. John started a management consulting business in 2006, putting everything on the line. Within a year, he found business travel around the country to be exhausting. He would drop things. He was starting to slur words when he was tired. Before long he had to use his hands for balance as he walked upstairs to their bedroom, which no one uses anymore. When the diagnosis was official, John was told he had about a year and a half to live—and yet he kept working for two years, defying the odds.
The couple’s sons, Nick, now 29, is out in California. Matthew is a 20-year-old student at St. Joseph’s College in Standish—and Linda says he’s one of the few people she can leave alone to care for John, and he was the last person who could understand John’s speech.
“I look forward to brief respites and some alone time,” Linda says. “But the minute I get out, I just want to be back with John. I’m responsible for him totally. And then everything he used to do, I do as well.”
With a bit of eye rolling, she adds, “That meant I had to learn to cook.” John had done all the cooking prior to his diagnosis.
At first she would apologize to John for dinner not being as good as she’d hoped. Later, when he started relying on a feeding tube and a supplement called Liquid Hope, she would assure him it wasn’t that good anyway.
Linda not only does the shopping, the driving and talking on the phone but also the toothbrushing and flossing, nail clipping, toileting, even spraying nose saline when John needs it, which, oddly, she can sense.
“It’s almost like his body is an extension of mine,” Linda says. “Thank goodness he’s not a prideful person and hasn’t made a big deal of it.”
After John’s morning feeding, Linda gets him washed—some days with a sponge bath and other days with a time-consuming and rather risky series of movements to get him in and out of a shower on the second floor of the house. “The tricky part is getting him out of the shower when there’s no belt loop or anything to hold onto,” Linda says. The shower routine takes about two hours. Every movement is premeditated to “conserve his energy,” Linda says. But sometimes unexpected things happen, like the day she caught him by his sweater and the fabric stretched in her hand, leaving him suspended for one stressful moment that could have injured either of them.
Most days, John has an appointment—perhaps a nursing visit, physical therapy or a therapeutic massage that prevents blood from pooling at his ankles.
Linda is “the master who controls it all,” John says, “so she has all the pressure.”
Between appointments, John opens his email and Facebook and gets busy with the Hope J-G Foundation, which the Gregoires founded three years ago. They dream of opening a 10-patient residence in Maine for people with ALS or MS, modeled after a facility in Chelsea, Massachusetts. The residents would be able to control the temperature, lights and even the window shades via WiFi, giving them unprecedented control over their environment.
The small amount of money the foundation has raised so far isn’t nearly enough. “We are going to need to find somebody who is willing to invest in it and get it off the ground,” Linda says. Meanwhile, the foundation is doing random acts of kindness for people with ALS. Giving back, including mentoring other families touched by ALS, is one of the ways the Gregoires stay sane.
Facebook has been another sanity saver, because of national ALS support groups.
“Having those friendships with people going through the same thing—you don’t even have to explain about being tired or feeling alone or feeling responsible for everything for the family—they just know,” Linda says. “I get frustrated. I get tired. And it’s hard for John to watch me do things, like when the power went out and I had to drag wood in and start a fire to keep John warm. He’s still very sharp, and in some ways that’s hard because he knows exactly what’s happening to him.”
John says it was harder to lose his voice than his ability to walk. Likewise, Linda has missed hearing her husband say, in his own voice, that he loves her.
Before ALS, the Gregoires would chat late into the night. Eventually, John’s side of the conversation had to be typed—and, for eight years, until he got a custom-blended voice reader, it sounded robotic. Thanks to VocalID technology, the reader on John’s tablet now sounds like John. In fact, the first time the Gregoires heard it, Linda wiped away tears—for both of them.
John’s typing has slowed, Linda observes, and his contributions to conversations are deliberate, intelligent, almost always practical and, unfortunately, a little bit slow. “A lot of times we just sit next to each other quietly,” she says.
And the way she says that, she makes it sound like a gift.
“Whether you’re facing ALS or a job crisis or an emotional crisis, you can’t face it on your own strength,” Linda says, adding that they both became Christians shortly before John’s diagnosis. “It might sound overwhelming to people, but this is how we do life now. We have finally made peace with it and see this as our normal life now.”
Amy Paradysz is a freelance writer from Scarborough.
Photos by Samantha Clark