Différent.es: Format dedicated to people who have a difference, a handicap they have had to face (with the cracks it creates) but who have transformed their difference into strength. Really strong stories about resilience, self-acceptance, vital momentum, to change the appearance of others…
Diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Charcot’s disease, Olivier Goy is using the time he has left to carry out research and free speech on the condition. For Yahoo, this father spoke about his story and how he perceives life now.
It’s the kind of bad news that calls everything into question, that can bring you down and down. Diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Charcot’s disease, Olivier Goy went through dark times but decided to get back up and fight to the end. Per Yahoo, this father has agreed to share his story and highlight his fight against this incurable and debilitating disease, whose diagnosis is still just as complicated.
“We tell you: it’s over in 3 years”
It was in December 2020, at the age of 46, that he had to face it, painfully. The shock is severe because nothing foreshadowed such a misfortune. “It’s a very complicated disease to diagnose. I’ve had MRIs, scans, blood tests, everything was perfect,” he confides, specifying however that he is currently suffering from tendinitis. The latter gradually evolved into paralysis of the arm, leg and then speech. For a year and a half the doctors have been proceeding by elimination, excluding cancer, Parkinson’s disease or Alzheimer’s. They end up naming the ailment he’s suffering from and breaking the news to him. The forty-year-old is stunned when he discovers that no cure can help him and that he therefore has only three years left to live.
“You are a prisoner of your body”
A period of depression followed. Oliver is bad. The more time passes, the more the symptoms of the disease become more pronounced. The father has difficulty speaking and moving. He’s getting less and less out of breath. “I found myself a prisoner of my body, in a wheelchair”, he explains, specifying instead that he has no cerebral sequelae. After a dark period of doubts, questions and uncertainties, she decides to go ahead, to live fully despite the handicap and to make the most of every second. “Above all, I didn’t want to stay home and wait for death. I didn’t want to punish myself twice. Once for the handicap, once for the depression. So I decided to recover and not be afraid anymore.”
In this ordeal, Olivier can count on the support of his family and especially his son with whom he always spends a good time. “My biggest pride is my 13-year-old son. For the record, he sits on my lap when I’m in my chair, he wants to pilot him,” he says enthusiastically. As he explains, the main thing is to do it “inhabit” and to accept the idea of dying someday.
“I am no longer afraid of death. Today I look at her face and she comes when she wants“
“From the moment you accept it, you are no longer afraid. Until you accept death, you run after bad things. Today, I look at his face, he can come when he wants. I am very serene”relies on philosophy explaining to see the world today “very differently”. “We live in a universe where people want to pretend to be strong on social media or within their company but in reality we are only strong when we are no longer afraid of death”.
Building on his history, Olivier explains that he now wants to use every second of his time to advance awareness of this disability and research. Sharing his frustration at not being able to express himself as he would like, he confided that he has found a way to convey a message…to make a film. “I have a lot to say and that’s why I want to talk about it”. Entitled “Invincible Summer”, a title taken from a phrase by Albert Camus, the feature film will be released in cinemas in May 2023 in 80 French cities and in Belgium.
A true ode to life and love, it is aimed at a large audience and does not want to be “horrifying” as he explains with a hint of humour. “It’s not something for the disabled. It’s just as good for the disabled as it is for the able-bodied”. A great “victory” for this passionate photography entrepreneur whose will to live is more than obvious.
Find the full interview with Olivier Goy