The former sports journalist Charles Biétrynow 81 years old, courageously fights against Charcot’s disease, which deprived him of his speech. In an interview of rare intensity granted to Audrey Crespo-Mara for Sept à Huit sur TF1he speaks through voice software, delivering a particularly moving testimony about his condition and his vision of the end of life. On the occasion of the publication of his memoirs The Last Wavehe shares with emotion his daily life, his desire to fight and his commitment to assisted dying.
Sitting in his living room, despite the ordeals he is going through, Charles Biétry keeps a disarming smile. “The words are in my head and I can’t get them out”he said lucidly, calling his inability to speak a real « torture ». Yet his humor remains intact: “Audrey, I’m alive. Alive. I only have a few weeks or months left to live. Why waste them? I want to savor them and do everything to support research and other patients. » Referring to his wife, he speaks of a “extreme happiness” who supports him in the face of trials.
A daily battle against illness
The neurodegenerative disease spares nothing: it affects one’s mobility, balance and, more recently, one’s ability to eat. Charles reveals that he will soon have to feed via an abdominal tube, but he remains combative. “I’m at war, Audrey. I am at war with illness »he confides with determination. “Sport taught me to hate defeat. I’m going to lose, I know it, but I want to fight for those around me, for my physiotherapist JB, and for all the other patients. »
Despite everything, he continues to walk a little every day on crutches and cycle regularly. He also clings to the hope of an experimental treatment in Switzerland. “I feel like a guinea pig, but I have nothing to lose. Maybe it will give me a few more weeks, and it could inspire more flexibility among the French health authorities”he explains.
Defender of the right to choose one’s end of life
-Charles Biétry clearly advocates for legislation allowing assisted dying in France. “Dying is already difficult. But dying badly is a double punishment.”he laments. He castigates those who oppose this freedom: “When we hear on TV sets people campaigning against the right to leave with dignity, it’s despicable. »
A bill, almost adopted before the dissolution of the National Assembly, reignited his anger. “I blame the deputies and senators who did not do their job. Between vacations, dissolutions, electoral campaigns and ego wars, they have forgotten the French”he is indignant. He still hopes for a unanimous vote so that those who, like him, face the inevitable can choose a dignified end.
A death in Switzerland, a painful option
If France does not legislate, he plans to go to Switzerland to benefit from medical assistance in dying. But the idea of this trip frightens him. “Crossing the border with my wife and children, meeting doctors I don’t know, swallowing a pill and knowing that they will return with my urn in the trunk… The more I think about it, the less I want it”he confides, his voice tinged with sadness.
However, he does not exclude this possibility, while recalling that 90% of people registered for such a trip ultimately give up. “I am not afraid of death, but I am afraid of being afraid”he admits, with tears in his eyes. Then he concludes with quiet strength: “ We all know that the end is inevitable. But in the meantime, let’s live each moment. The time to cry will come soon enough. »
