Deprived of his voice by ALS (Lou Gehrig's disease), Charles Biétry appeared on France 2 Monday evening in an interview with Laurent Delahousse. The former sports journalist spoke using artificial intelligence capable of recreating his voice from answers he typed himself.
An artificial voice to convey the essentials
The disease is progressing. Charles Biétry says he can barely walk anymore. He can no longer speak, nor express himself with his own voice. His words are now typed, then read by an artificial voice that reproduces his own. In this interview, he spoke frankly about his end of life: "I'm going to die, that's for sure. But I don't want to die badly. To agonize on a hospital bed, inert, without responding."
"It will be too late for me, but they will find it."
Charles Biétry knows that his future is already largely written. But he maintains a conviction for other patients: research will eventually succeed. "The researchers will find a cure. They will, I'm sure of it. It will be too late for me, but they will find it." The disease progresses slowly, he said, but not "very slowly"He remains in the fight as long as his body holds up. "As long as my lungs hold up, I'm still in the game. I'm still alive. But there are limits. Opening my ribcage to install a device that will slow my suffocation is out of the question for me."
The refusal of a dying ordeal in the hospital
The former sports journalist doesn't just talk about death. He talks primarily about how he doesn't want to die. He rejects the image of an end of life that is endured, prolonged, and devoid of freedom. "It's a fight, and I hate to lose. I'm putting my life on the line. I'm going to die, that's for sure. But I don't want to die badly. To agonize on a hospital bed, inert, unresponsive, without hope, barely reacting to the pain, while my wife and children cry in the corridor? To wait for a final, liberating breath that could take weeks to come? No, no, no, I want to keep my freedom and dignity until the very end."
Dying in Switzerland, for lack of a solution in France
Charles Biétry then explains that the idea of going to Switzerland for end-of-life medical assistance quickly became the obvious choice: "Dying in Switzerland, with medical assistance for the end of life of my choosing, quickly became the obvious choice."
He says he made this decision with his family: "With my family's agreement, I enrolled, regretting that I didn't have the same opportunities in France. Then time passed, and one day I imagined the trip to Switzerland."
"On the way back, a funeral urn"
Charles Biétry pictured this journey with terrifying precision: a departure surrounded by his family, then a return without him. "On the way there, Monique my wife, François and Juliette my children, and me. On the way back, Monique, François, Juliette and a funeral urn." This prospect frightened him. He said he hoped that a change in French law could prevent other families from finding themselves in such a situation. "And I was afraid; passing the law would prevent such distress."
