Charles Biétry shares his life-affirming philosophies while battling Charcot’s disease. Emphasizing the importance of cherishing loved ones and living fully, he expresses a desire for dignity in end-of-life care. Despite the challenges of his illness, including losing his ability to speak, he remains resilient, advocating for legislation that supports patient rights. He wishes to avoid an assisted death abroad, hoping instead for a peaceful farewell surrounded by family in France, filled with love and gratitude.
Charles Biétry’s Inspirational Mantras
Charles Biétry embraces two powerful mottos that guide his life: “When you lack what you love, cherish what you have,” and “It’s not about the number of years in life, but the life in those years.” During challenging times, he finds solace in a phrase from his wife, who reminds him, “We will laugh until the end.” This sentiment encapsulates his approach to living with an incurable illness.
A Battle Against Charcot’s Disease
As Charles faces the devastating effects of Charcot’s disease, which he acknowledges may leave him with “only a few weeks or months to live,” his greatest wish remains simple yet profound: “I hope my wife’s words come true.” In a poignant interview with Audrey Crespo-Mara, featured on ‘Sept à Huit’, Charles shares his journey with remarkable resilience.
Due to his illness, Charles has lost the ability to speak, prompting him to type his responses, which were then transformed by artificial intelligence to recreate his voice. “It’s torture. The words are trapped in my mind, and I can’t express them,” he explains, yet he maintains a positive outlook. “I am alive,” he asserts. “Why would I waste my precious time and burden my loved ones with sorrow? I want to embrace every moment and contribute to research and help others.” His determination to laugh and live fully continues to shine through.
Daily life for Charles includes simple yet meaningful moments—shared glances, smiles, and gentle touches from his wife. His routine involves short walks on the beach, cycling, and physiotherapy sessions. “I am at war against this disease. Exercise fuels my fight against defeat. Even though I know I will eventually succumb, I owe it to my loved ones to keep battling. The Bretons are known for their resilience,” he reflects, recalling the six-year wait for a proper diagnosis that left him “stunned.” He humorously notes, “I was inspired by Rocky when I received the news, and perhaps Sylvester Stallone has given me some inner strength.”
Now, he channels this strength into advocating for himself and others, hoping to inspire change. He looks forward to a bill addressing “patient support and end-of-life care” that was set to be presented to the Council of Ministers in spring 2024. “Dying is hard enough without having to suffer unnecessarily. It’s tragic to see patients in a hospital bed, gasping for breath, while their loved ones are left helpless. When I hear those who oppose our right to die with dignity, it feels appalling. A law could provide the peace we need,” he argues.
Charles yearns for a collective commitment from lawmakers to pass this legislation, allowing him to face death without feeling like a burden to his family. Following the recent dissolution of the National Assembly, the proposed bill was postponed, and he expresses frustration: “I hold some deputies and senators accountable for their inaction amid vacations and political squabbles. They have neglected the needs of the French people.” He reiterates his desire for unanimous support from leaders so he can approach death with dignity and grace.
Above all, Charles hopes to avoid the sorrowful journey from Brittany to Switzerland for assisted death, a trip that would leave his family returning without him. “Traveling to end my life in Switzerland is not how I envision my final days. The thought of my family returning home with my urn is unbearable. I believe that with the right laws, palliative care could provide the comfort I need,” he shares.
Despite having made contingency plans for a trip to Switzerland, he holds on to hope for a peaceful end in France. “I’ve signed all the necessary documents, and my family is supportive. Ideally, I wish to take my final breath surrounded by loved ones, holding their hands with a gentle smile, and letting them know how much I love them,” he concludes, fighting back tears. “We can grieve later, but for now, let’s cherish every moment we have together.”