Maryannick Pavageau with her daughter Myriam (r) and Senator Monique Papon (l), who bestowed the award.
France has just awarded the Légion d’honneur to a woman who beat locked-in syndrome but has been a quadriplegic for 30 years. Fifty-six-year-old Maryannick Pavageau received the distinction for years of battling for the dignity of the handicapped and disabled.
In 1984, when she was 29, she had a stroke which left her completely paralysed. For months she was in a coma. When she awakened, she could only move her eyelids. Later she recovered some speech and a bit of movement in some fingers. But she still required round-the-clock professional care when she returned home after 32 months in hospital. She had a husband and a two-year-old daughter and she could barely communicate with them. It must have been devastating for an active woman working as a lawyer and marriage counsellor.
But Mme Pavageau is a woman of determination and courage. “When I discovered the state I was in, it never occurred to me to ask ‘why me?’” she says. “Instead, I said, ‘what’s next?’”
Despite her gigantic handicaps she raised her daughter Myriam -– who is now a diplomat –has travelled as far as Rome and Beijing, and has become an activist for the disabled and against euthanasia. Jean Leonetti, a cardiologist and a deputy in the French parliament who wrote a 2008 report for the government which slammed the door shut on the legalisation of euthanasia, was so impressed with her intelligence and courage that he devoted a chapter in his book on euthanasia to describing how she managed to cope with her disability. Its title was “la force immobile”.
Her interview with Dr Leonetti, as he gathered material for his report, is very moving.
“Every painful situation calls for respect but is just saying that enough when people cry for help? We must refine the meaning of words, step back, and not get caught up in waves of emotion. Let us distinguish between what is presented as a gesture of love and what is actually a great cry and desperate quest for love…
“The time has certainly come for associations which defend the weak to join the current debate and unequivocally affirm that everyone, regardless of his handicap, his accident, his discouragement, retains a place in society and that there are no limits to human dignity.
“I confess that sometimes I feel discouraged. I get completely fed up.
“But as a response to our deep discouragement, are we only entitled to what is hypocritically called the ultimate ‘act of love’? I fully recognize that our situation can sometimes be difficult. Even if there is relief for physical pain, there is the mental suffering. but you can hang on, you’re not alone. We must keep up out hope, if only in the progress of science.”
A resident of Sainte Nazaire, on the Atlantic coast, Mme Pavageau gave an interview about her life to the local newspaper after this week’s award:
“All life is worth living,” she said. “It can be beautiful, regardless of the state we are in. And change is always possible. That is the message of hope that I wish to convey. I am firmly against euthanasia because it is not physical suffering that guides the desire to die but a moment of discouragement, feeling like a burden… All those who ask to die are mostly looking for love.”
Despite her paralysis and her need for round-the-clock care, she was inspired by her love for her family to fight for life. “My life is not what it could have been but it’s my life. Finally, I have been faithful to my values. I had the love of my husband and my daughter Myriam, who was two years old at the time and that gave me the strength to fight. Despite my difficulties speaking Myriam has always understood me.”
Two years ago, she wrote an article in which she strongly criticised discussion of euthanasia in the media. “Public statements produce unexpected collateral damage amongst people suffering from serious illness such as Locked-In Syndrome. We are constant consumers of TV and radio programs. In response to our deep discouragement – and who is free from that? – we are only offered this final right, hypocritically baptised as a sign of love.
“A recent study on the quality of life of locked-in syndrome patients found, to the astonishment of the medical profession, that when asked ‘if you had a heart attack, would you want to be resuscitated?’, the great majority of us answered: Yes.”
She is proud to become a Chevalier of the Legion d’Honneur, France’s highest decoration, although she looks upon it as recognition for everyone whose dignity has been diminished by being called a “vegetable”. She smiles as she tells the reporter, “If someone had told me that this would happen to me someday, I would never have believed it!”
Michael Cook is editor of MercatorNet.