Let me tell you about my father, Luc Cousineau, a well-known Quebec singer song-writer.
He is best known for his 1976 hit “Vivre en Amour” (“Live with Love”), which was named a classic by the Society of Composers, Authors and Music Publishers of Canada and helped win him a place in the Canadian Songwriters Hall of Fame. He has also written 19 albums, hundreds of radio and television jingles, and music for films.
Through his melodies, Luc has been welcomed into the hearts of all Quebecers. As an artist, he has never been afraid to take face challenges to fulfill his dreams. However, he now faces a new and truly frightening challenge – and he is facing it with courage, strength and sensitivity.
That challenge is Amyotrophic Lateral Sclerosis (ALS).
When he received the diagnosis in September 2013 my father knew his life would never be the same. ALS would affect his hands and prevent him from playing the guitar and composing, which was a major blow for such a creative person. He knew the disease would paralyze every muscle in his body, one by one. He knew he would slowly become a prisoner in his body, one day at a time. He also knew he would keep his beautiful, creative mind, until his last breath.
Now, three years later, he has lost the use of his hands, his mobility is greatly reduced and his voice is nearly silenced. Yet, these blows have not stopped him from pursuing his projects nor his dreams.
I wish I could show you how beautifully stubborn and determined he is! Every one of his projects gives him new life. As he says – “Just watch me, ALS!”
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Karine and her father Luc Cousineau
For example, with his creativity still intact, he must invent original ways to compose words and music, which takes incredible patience. He uses a foot pedal to type out his ideas, one letter at a time which is how he created his box collection: “Ma vie en chansons, Des Alexandrins à Luc Cousineau 1966 à 2015,” (“My Life in Songs”) which contains 156 songs on nine CDs and includes a 92-page book.
“If it weren’t for the Grim Reaper drawing near, I would not have created this box collection and certainly, I wouldn’t have written the book. Today, I have closed the loop. I hope that my songs will comfort you, will make you laugh, or cry or will just get you tapping your feet. Songs bring us together with happy memories. All things end with a song,” he says.
Luc now also uses his talents to raise awareness of ALS. He has conducted media interviews that lift our spirits and encourage others who have the disease and their families. His philosophical approach to life is inspiring and he has shown surprising strength. His words, steeped in humanity, go straight to the heart.
My father is surrounded by those closest to him. Every moment spent with the family is precious and delivers that dose of happiness that allows him to continue along his path, living one hour at a time. An experience like ALS brings us back to what is essential: to live with love.
All people living with ALS need to be loved and supported, just like my dad. The stories we hear from others remind us that we are not the only ones living with such a sad reality.
As Luc has said, “I see us as a battalion mounting an assault on the disease with a banner of love fixed over our hearts. What we all wish for is a great wave of solidarity from others. Until now, no cure has been found and this disease is relentless and unforgiving. Research must continue. Research is our hope!”
For my father and all the others touched by ALS, I’m asking for your help today.
This is truly the time to live with love or ” vivre en amour”! Please support the ALS Society of Quebec!
Karine Cousineau, fille de Luc Cousineau