Story by Lisa Dutton, Shout! Communications
Once a month, Marie-Eve Lemaire volunteers at the amyotrophic lateral sclerosis (ALS) clinic at L’Hôpital régional de Saint-Jérôme. She says talking with and helping those touched by ALS allows her to remember and honour her late husband Patrick Martin.
“Volunteering helps me mourn Patrick. Little by little it eases my pain. I see my husband in every single person who has been diagnosed,” she says.
Young Life Cut Short
Patrick was 36 years-old when the fatal diagnosis was pronounced. Marie-Eve says it wasn’t easy. Her husband was young. They had just married; their daughter and son were 10 and 15. “He never came to terms with the diagnosis. I wish I could say he eventually accepted his fate and found peace, but he never did. He was very angry, frustrated and frightened,” recalls Marie-Eve. Patrick succumbed to the disease within three years.
Marie-Eve says the ALS Society was a huge support. The monthly newsletters, the social activities and support groups helped break the family’s isolation. Through the Society, Patrick met Marc Lavigne. The two were diagnosed around the same time and quickly became friends. They communicated through a Facebook support group for those living with ALS, sharing their challenges and feelings and exchanging jokes.
Despite the disease, Marie-Eve made it a point to keep right on living. She wanted the family to be able to look back on happy times. They went to Florida where everyone got sand between their toes and felt the sting of saltwater spray on their faces. She gets choked up remembering her husband’s joy when they got him into the hotel pool and the warm water washed over him.
After her husband’s death, Marie-Eve wanted to talk about what her husband and family went through. She wanted people to understand why it was so important to donate to the ALS Society of Quebec and to fund research to find treatments and a cure.
“My husband was really hoping a cure would be found in time to save him. Now, I share his story to encourage people to donate so researchers can find a cure to save someone else’s loved one,” she says.
Organized a Walk for ALS
Marie-Eve along with Elyse Claude Léveillé and Nathalie Provost, two other women who lost their husbands to ALS, lent their time and energy to help the ALS Society of Quebec organize its first In Memoriam Day held last June at the Palais des congrès de Montréal. This special day celebrated the lives of people who fought bravely against the fatal neurodegenerative disease; united families who endured similar experiences and highlighted the work of caregivers.
“I volunteer because I remember how it felt to be told Patrick had ALS. He was handed a death sentence. People need to talk openly about it and since I’ve lived through such an experience people are welcome to ask me for tricks, tips and advice,” says Marie-Eve.
If you would like to organize a Walk for ALS in your community or another fundraiser or if you’d like to volunteer, please call Melodie Prince, Fundraising Coordinator at 1 877 725-7725 ext. 108.