The film “Invincible summer”, released in cinemas everywhere in France last Wednesday, May 31, was a real success. The documentary directed by Stéphanie Pillonca retraces the journey of Olivier Goy, a brilliant young entrepreneur who, in December 2020, received a devastating diagnosis: ALS better known as Charcot’s disease. Olivier Goy confided in the Dépêche du Midi.
Dynamic entrepreneur, you were diagnosed in 2020. What was your reaction?
The announcement of this disease was a huge shock. I was lost. Unable to see any positive in all the information I received. 3 to 5 years to live. No treatment. Prisoner of my deteriorating body.
In short, I was depressed. Fortunately, a fantastic psychologist at the hospital guides me and reaches out to me. After 3 months, thanks to her, I understand that if I get depressed, I will punish myself twice. I must live intensely, despite the announcement of my approaching death. After all, we are all going to die.
What prompted you to publicize your disease?
At the beginning, in March 2021, I told my story for the first time in a podcast, for the sake of transparency with my professional entourage. But the message quickly went beyond the sphere of my professional network.
I have received thousands of poignant testimonies. Crazy testimonials! Known and unknown people, invisible handicaps, rapes, family violence… I started to see the world differently, with its fractures, its cracks. This was the trigger for the film.
“Invincible Summer” was released in French cinemas on Wednesday, how was this film project born?
I imagined this project a year and a half ago, and it quickly took shape thanks to two very nice encounters. The emblematic producer Pierre-Antoine Capton (Mediawan) and the incredible and sensitive director Stéphanie Pillonca.
The goal of the film is to raise awareness and challenge the judgment of others and of oneself. More broadly, the gaze of others and the gaze of oneself are a subject that affects everyone, disabled or not. “Invincible Summer”, under the pretext of talking about disability and illness, is aimed at a wide audience who often ruin their lives because of a poorly posed look at everyday problems.
“Invincible Summer” is clearly an ode to life and love. Nothing creepy. Beauty, laughter, a few tears sometimes but above all a furious desire to live. This documentary is a helping hand to all. He must make people love life!
Since this media coverage, have you felt a change on the side of the public authorities in terms of health policies?
The further I progressed in my journey as a patient, the more I realized my privileged status. With better access to information and financial means.
I am a privileged person who knows how to circumvent obstacles. I can pay for my wheelchair, I know how to pick up my medication in Switzerland or elsewhere, I do without my priority parking space.
But there are so many people in pain. This is the meaning of my fight! It is to testify to this, but above all to share my ideas that I wanted to meet the President of the Republic. The meeting took place. February 28. One of the early victories, shared with many other fighters, is 100% wheelchair reimbursement. But the road is still long! There is so much to do !
What does the bill on the end of life mean to you?
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.