Locked-in syndrome woman receives Legion of Honour

Maryannick PavageauFrance has just awarded the Légion d'honneur to a woman who has been a locked-in quadriplegic for 30 years. Maryannick Pavageau received the distinction for her battle against euthanasia. A resident of Sainte Nazaire, on the Atlantic coast, she gave an interview about her life to the local newspaper after this week’s award:

"I was 30 years old when I was struck down by this syndrome after a stroke. The disease was little known at the time, but Jean-Dominique Bauby has described it in his book The Diving Bell and the Butterfly. It is a paralysis of the limbs, sometimes more, but you retain consciousness. I was one of the first to survive. After three months in a coma, I woke up to the amazement of the doctors! I started speech therapy and I spent 32 months in the hospital."

Mme Pavageau is a member of the Association of Locked-in Syndrome (ALIS) and contributed to the 2008 Leonetti commission report about euthanasia in France. "All life is worth living,” she told the newspaper. 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 Miriam, who was two years old at the time and that gave me the strength to fight. Despite my difficulties speaking Miriam has always understood me.”

She is proud to receive France’s highest decoration: “The Legion of Honor is a great recognition and I am very proud and excited to be decorated. Everyone who has a just and strong message to pass on should receive it."

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 sydndrome 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.” ~ Saint-Nazaire.maville.com, Oct 27

MORE ON THESE TOPICS | euthanasia, France, human drama, locked-in syndrome

This article is published by Michael Cook and BioEdge under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

 Search BioEdge

 Subscribe to BioEdge newsletter
rss Subscribe to BioEdge RSS feed

comments powered by Disqus