How do we live when the love of our life can disappear at any time, due to illness? Intensely, to say the least. For more than a year, Marianne Marquis-Gravel has felt this sword of Damocles hanging over her couple, since her spouse, the writer Simon Roy, is suffering from incurable brain cancer.
Posted at 7:15 a.m.
I have often spoken to you of Simon. The last time was last May for the unexpected release of my end of the worldhis fourth and final novel, written in a hurry.
Marianne’s turn to publish a book. In the light of our ignorance recounts her dazzling love affair with Simon, in the shadow of this fatal diagnosis. This is her first title and, of course, she did not expect to write this one. “I have a really paradoxical relationship with this book,” she explains. For me, it was therapeutic to write it, I’m glad it’s published, but I can’t say I’m glad it exists, in the sense that I would have preferred not to have to write it down. »
We are in a café on Laurier Avenue where Marianne has come with Simon. After four publications, he is well aware of the excitement that accompanies the release of a book, especially the first one, and he delicately leaves the café to leave us alone for the interview. “Now is your time!” “, he throws at her, returning to the car where he will take a nap to rest.
I ask Marianne where they are with Simon’s illness. “It’s pretty stable,” she replies. We have good days. For the past week, his short-term memory has been failing. We can have the same discussion four or five times a day, as if we had never had it. Which worries me and tells me that the disease is progressing. »
I always have the fear of getting up in the morning and that he no longer knows who I am. For a year, I’m still a bit on adrenaline.
Marianne Marquis-Gravel
She recounts in her story these few terrible episodes where Simon’s mind experienced eclipses. Loss of language, memory, paranoia. And each time he came back. Moments of pure anguish, when she feared not to find the man she knew. She never knows when a crisis will be irremediable. That’s why she asked Simon to record a video where he talks to her, and that she will watch “after”. This time after him which she doesn’t want to think too much about.
PHOTO ROBERT SKINNER, THE PRESS
Marianne Marquis-Gravel and Simon Roy
For now, they are in a perpetual present and Simon continues to defy the odds. A few months ago, he dreamed of seeing Julien Clerc’s concert and attending the launch of Marianne’s book. He made it to these appointments. Under the circumstances, each of these moments means a lot to both of them. That’s kind of what Marianne wanted to capture through writing, because In the light of our ignorance is a book about life. Death is not the subject.
We don’t have a future together, you know, so the present is important, times a thousand. Our love is tangible, I needed to grasp it, to crystallize it. Just because it won’t last long doesn’t mean it’s not intense.
Marianne Marquis-Gravel
Marianne and Simon, who are 20 years apart, have been together for three years and have spent almost as much time with the disease as without it at present. Some will find that three years is not much, and that Marianne is young, that she will be able to rebuild her life, but she does not see herself with another man. You know, love at first sight, when you know you’ve come across the right person? I understand Marianne, because even though I have been with my lover for 24 years, I would say that everything that makes our love last was there from the first days. Moreover, time is the great theme of this book, the title of which can be read in two ways: the light of ignorance is that of before illness, when they were madly happy, but it is also that of today, when they do not yet know when death will come. This places them in an abnormal, sometimes untenable situation, where Simon is jealous of Marianne’s future without him, and Marianne jealous of her past without her. Their only space, their only common window is the here and now.
Simon often says that the best year of his life is the one he has just had, when he almost died three or four times. It was actually the best and worst year of our lives.
Marianne Marquis-Gravel
I read In the light of our ignorance in small doses, in the evening in my bed, moved to discover this love that Marianne compares to that of John Lennon and Yoko Ono, smiling at times in front of all these little intimate details that make up the couple, admiring how they go through hardships. I dare ask her, guessing the answer in advance, if she would have preferred never to meet Simon and avoid this suffering. To remain, in a way, in “the light of his ignorance” before he was in his life. “Never,” she said. Simon often tells me that if I had to do it again, having known he would impose that on me, he wouldn’t have approached me. Me, on the other hand, not for a second did I say to myself that I would have preferred not to live this love. If fate exists, if it was planned for him to die like this, life put someone on his way who was going to love him, to live good years. I know that Simon will never die, he changed me forever and that part of him in me will remain. What emerges from all this, and from the book, is love. It’s the only way to beat death. »
In the light of our ignorance
Marianne Marquis-Gravel
Lemeac
221 pages