Building a team for a solid future A fraternity of friendship and support – Laughing, sharing and inspiring
When Alain Bérard walked up to the podium to give his acceptance speech and thanks for raising the most money for the ALS Walks last year, he never would have guessed that he would walk away with the best prize of all: a fraternity of friendship and support.
“Right after my speech a few people came to see me,” says Alain, who is living with ALS. “This is where I first met the core of this group, such as Maurice Leclerc, Michel Gauthier, Marc Lavigne, Robert Michaud and Martin Lauzon—all facing the same journey with ALS.”
Alain said they connected instantly. From that point on they have kept in touch via email, phone, Facebook and sometimes in person exchanging information about the disease on things such as tax credits and help you can get from the CLSCs. They also work at keeping each other’s morale up, making jokes sometimes takes center stage.
“As time moved on we became like a small community of people,” says Alain. “The best thing about connecting with others facing ALS is they are at peace with where they are. I look around and I see they are not taking life for granted; they take one day at a time and every happy moment they want to share with others. They know what is important in life.”
Most recently Marc Lavigne started a Facebook (FB) connection for the community of friends called “Chums SLA.” This communication outlet allows the group to connect and grow on another level.
“It is a very beautiful initiative,” says Martin Lauzon. “This enables us to keep in touch, overcome isolation and to provide useful information in a social media format. It also allows us to laugh, tease, keep hope and express our emotions, which is comforting and doesn’t make us feel like we are all alone on this ship.”
Marc Lavigne says PatientsLikeMe.com (PLM) is also an excellent way for the ALS family to stay connected and to feel less isolated. “PLM and FB are really good because it’s impossible to deal with this disease alone 365 days and nights!” says Marc. “Having close ALS friends is PRICELESS. We are all going through the same issues (financial, family and children, the disease itself). There are no taboo subjects.”
“Exchanging with others who have the same illness as me has been a very motivating factor,” says Maurice Leclerc. “Meeting people facing the disease with such courage, strength and perseverance motivates me like Maurice Richard did, when he was playing for the Montreal Canadians! He was a winner. The meaning of life is sharing with others, learning from them, and then improving your life as you move along.”
Alain refers to “Tuesdays with Morrie,” when talking about the meaning of this community of friends. “That’s what it’s all about…”
“So many people walk around with a meaningless life. They seem half-asleep, even when they’re busy doing things they think are important. This is because they’re chasing the wrong things. The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.”