The ode to the life of Olivier Goy, suffering from Charcot’s disease

Every ninety minutes, a new case of amyotrophic lateral sclerosis (ALS), the scholarly name for Charcot’s disease, is diagnosed worldwide. For Olivier Goy, 49, the announcement fell on December 8, 2020. Like a cleaver.

Because ALS, an incurable neurodegenerative pathology, is not only the most frequent rare disease – between 7,000 and 8,000 patients in France and 1,800 new ones per year – it is also one of the most terrible: it translated by an inevitable paralysis of all the muscles which leads to death by suffocation within a short time, three or four years on average.

In a few minutes, this brilliant entrepreneur at the head of October, a fast-growing financial company; this fulfilled man, married and father of two young boys; this tall fellow from Savoy, a fan of tennis and cycling, sees his world collapsing. “I cried like a child,” he confides soberly. It will take him a few months to rebuild everything on new foundations. “I was told I was going to die. I decided to live. »

On March 21, 2021, Olivier Goy decided to confide in the microphone of Matthieu Stefani, producer of “Génération Do It Yourself”. The podcast is usually devoted to business leaders who come to talk about their successes. In episode 181, entitled “Life, Death, Overcoming”, Olivier Goy breaks the codes to testify, for an hour and a half, of the ordeal he is going through and the philosophy he has given to overcome it.

“I’m not going to look at the Olivier that I was or project myself into the future with questions that cause anxiety. I focus on the present. I’m living the big day. I’m just taking advantage of everything,” he says in a direct and surprisingly light tone. This unusual “coming out” in business circles will trigger a wave of sympathy that he did not expect. “I realized that there were so many people in pain,” he says.

Since then, Olivier Goy considers himself “on a mission” and spends himself without counting the cost, despite the progression of the disease which forces him to use a wheelchair and gradually prevents him from expressing himself. “She wants to gag me, but I will continue to fight against fate to prepare for the future,” he confided to La Croix in April, on the sidelines of the conference organized by the Association for Research on Amyotrophic Lateral Sclerosis (ARSLA ).

One of his first victories was to obtain from President Macron, met at the end of February, the commitment to reimburse 100% for wheelchairs. “But the road is still long! There is so much to do ! “, he pleads without losing the smile that lights up his blue-green eyes.

No question, on the other hand, of losing one’s strength in the ongoing controversy over the highlighting of Charcot’s disease by supporters of the legalization of euthanasia. “The end-of-life debate is extraordinarily complex. The ultimate decision depends so much on each person’s story. I refrain from judging individual choices, even if I love life intensely, ”he decides, tapping on his tablet.

His broader fight is to free speech on the taboos of disability, dependency and death. “My goal is to raise awareness and change the way we look at ourselves and others, whether we are sick or not. My message is simple: life is beautiful, really beautiful, as long as we learn to enjoy it, without regretting yesterday and without being afraid of tomorrow. »

To pass it on to as many people as possible, Olivier Goy has agreed to tell his story in Invincible Summer, directed by Stéphanie Pillonca and expected in theaters on May 31. A solar film that sometimes wets the eyes a little, but it’s probably to wash our eyes. And after ? The answer is given in the film’s postscript: “From the cinema to the cemetery, there is only one step. But I’m not afraid. To learn to live, you have to learn to die. »

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