Affected by Charcot’s disease, the writer decided to resort to euthanasia, and regrets that French legislation does not allow it.
In September 2015, the ad fell. Anne Bert, then 57 years old, suffered from amyotrophic lateral sclerosis (ALS), commonly known as Charcot’s disease. An incurable neurodegenerative disease, which causes progressive paralysis of all muscles. Patients find themselves locked in their bodies, awaiting death.
An expectation that the writer refuses to endorse. She has already lost the mobility of her arms, her head does not hold without her neck brace, and she needs assistance for all daily actions: eating, drinking, washing … Very soon after the diagnosis, she had taken a decision: euthanasia. French law does not allow it, so she will go, reluctantly, to Belgium.
A supervised procedure
In France, the Claeys-Leonetti law of 2016 provides for the possibility, for terminally ill patients, of deep and continuous sedation. But there is no question of euthanasia, unlike Belgian and Swiss laws, which are much more advanced on the subject of end of life.
“I am forced to flee my country to die”, she regrets in an interview with The Obs. There, a law authorizes assisted suicide and euthanasia in hospitals or at home. “On the other hand, it is totally false to believe that it is enough to knock on their doors and say” I want to die “for it to succeed,” she underlines.
The procedure is indeed very supervised, she says. Doctors and psychologists are involved in the process, which takes around a year. The writer’s French doctor was even included in the loop.
Posthumous book
In recent months, the symptoms have accelerated. “I know I’ll be drooling shortly,” she continues. That I will no longer be able to speak, nor walk, nor swallow. I am being walled up alive. “
She took advantage of her last months of life to write a book, The very last summer (Fayard), to tell about her fight, and try to change mentalities and the law, although she denies it.
“I am a very ordinary person, a woman like there are thousands of others. I am neither an activist, nor particularly courageous. What is happening to me is not unfair, I just made a bad pick. “
The book will be published on October 9, which is, in all likelihood, a few days after its disappearance.
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