Accompanying a loved one who lives with multiple sclerosis, “it’s a succession of small bereavements”, notes Jean-Benoit Cloutier-Boucher, whose mother had it. Despite the difficult times, this did not prevent him from approaching the disease with a touch of humor in his poetic account on the subject, Drink the sea with your eyes open. “Despite the illness and the bereavement – there is not just that – there are the exchanges, the laughter, the love that we have for each other, and I think that is what triumphs at the very end. . »
This sentence upsets Sophie Berriault, herself suffering from multiple sclerosis; because the meaning of the words can play a big part in the acceptance of the disease.
I was lucky, at the time of my diagnosis, to have a doctor who said to me: “You have; you are not multiple sclerosis.”
she says.
With Dr. Nathalie Arbour, Jean-Benoit Cloutier-Boucher and Sophie Berriault talk about their respective realities and the glimmers of hope for people living with the disease.
At the microphone :
- Jean-Benoit Cloutier-Boucher, author
- Sophie Berriault, person with multiple sclerosis
- Dr. Nathalie Arbour, full professor in the Department of Neuroscience at the Université de Montréal, researcher at the CHUM and head of the neuroscience research axis at the CHUM