Charles Biétry, the former sports director of Canal+, made waves recently with his appearance on the show Sept à Huit, broadcast on TF1 on January 26, 2025. The 81-year-old journalist, who has been battling amyotrophic lateral sclerosis (ALS), engaged with audiences by utilizing groundbreaking technology—an artificial intelligence program capable of recreing his voice, which he lost to the debilitating disease.
Despite his condition, Biétry's passion for communication and storytelling remains undeterred. Speaking from his home in Carnac, Brittany, he expressed the challenges faced due to his illness, summarizing the frustration of being unable to articulate his thoughts: "Les mots sont dans ma tête et je ne peux pas les faire sortir." This poignant quote captures the essence of his struggle, emphasizing the emotional turmoil of living with ALS.
Biétry's appearance on the show came shortly before the release of his memoir, La Dernière vague, detailing his experiences since his diagnosis, which was announced publicly in August 2022. Through his writing and this interview, he sheds light on both the personal and broader societal aspects of his condition.
His tone throughout the interview encompassed hope and defiance, articulately discussing his fight against not only ALS but also the systemic issues surrounding end-of-life care in France. Biétry expressed his desire for legislative reform to facilitate assisted dying for terminal patients, stating, "J’en veux aux députés et sénateurs - pas tous - qui n’ont pas fait le job," criticizing lawmakers for their failure to adequately address these issues.
Expressing his frustration with the current situation, Biétry candidly shared his thoughts: "Si en France les conditions ne sont pas réunies pour une mort douce... j’irai en Suisse," alluding to the stark reality of seeking assisted suicide abroad—situations contemplated by many suffering from terminal ailments, especially where local laws hinder their choices.
Though faced with the inevitability of death, Biétry demonstrated resilience, seeking to embrace life and use his remaining time meaningfully. He stated, "Je veux en profiter et faire tout ce qui est en mon pouvoir pour aider la recherche et les autres malades," advocating for awareness and support for ALS research.
The interview's innovative element, employing AI to vocalize Biétry’s written responses, sparked conversations surrounding technology's role in bridging communication gaps for individuals with speech impairments. The team responsible for this technological feat had to work diligently to integrate audio samples from Biétry's past broadcasts to achieve a realistic portrayal of his original voice, which brought both comfort and connection to his audience.
Biétry remains active, managing to walk short distances daily and maintaining his fitness regimen—key aspects of his fight against the disease. His refusal to succumb easily has not only influenced his immediate family but has also encouraged others dealing with similar circumstances.
I'm still able to laugh about my condition," he said, reflecting on the importance of humor and positivity even amid overwhelming despair. His upbeat nature is not just for himself but also to alleviate the burden felt by his loved ones around him.
Despite the dire nature of his prognosis, with health deteriorations affecting his ability to eat and communicate, Biétry remains adamant about his stance against suffering unnecessarily. "La maladie me donne donc rendez-vous avec la mort. Pas sûr que je vienne. En tout cas, je me battrai avant," he proclaimed, emphasizing his unwillingness to face death without putting up a fight first.
Biétry’s interview serves not only as his first public statement about his battle with ALS but also as an important commentary on supportive end-of-life options, pushing for legislative changes. He wishes for the dignity of those facing terminal illnesses to be honored, asserting, "C’est déjà dur de mourir. Mais alors mal mourir, c’est double peine..." articulately framing the plight of those who suffer without choice or compassion.
By sharing his story—both the challenges and the grace with which he faces them—Biétry invokes empathy and action. The poignant conversation ignites interest and urges discussions about the necessary reforms and human-rights-focused approaches to end-of-life care.
Biétry's candidness sheds light on the human condition and reveals the immense courage required to face such life-altering circumstances. The power of his voice—restored through technology and fueled by personal conviction—outlives the physical limitations imposed by illness. His narrative pushes us to reflect on these broader issues surrounding health, choice, and dignity at life's end.