Flagship Article - January/February 2012

Sign of the Times By Rejean Bernier

Unbearable Love

“If I ever became condemned to being bedridden and dependant on the care giving of others, I would lose hope. I would rather die.” This admission, that I heard once from a man in my neighbourhood, is one several folks would agree with. In his forties, he was a workaholic, powerful and popular, unable to imagine himself living otherwise.

Isn’t it what we all desire – to live our lives “to the max” until the very end? Yet, can one still do so when afflicted with a degenerative disease? And, are there limits to living fully? In Québec, the Committee Dying with Dignity launched by the Euthanasia Prevention Coalition Commision has examined these important issues. Sharing principles and beliefs with others is one thing, but having to endure physical suffering or remorse and helplessness when a loved one is in great pain or anguish is something else altogether. Establishing rules to deal with such dark moments in life is wise. On the one hand, medical progress forces us to do so, especially when “Medicine prolongs death”! On the other hand, we rarely take time to reflect collectively on death and dying. There is more to life than hockey…

Experts on the Mystery

Physicians, lawyers, pastors, activists, and many others are questioning themselves. They have not yet reached a consensus. Euthanasia, assisted suicide, palliative sedation, and heroic measures are some of the topics touched upon. What is legitimate to some is shocking to others! Even when suffering is unbearable or death smothers all hope, life remains no less mysterious or elusive. Dignity and the quality of life are often mentioned to provide appropriate care to the individual. However, based on the testimony of some folks, these concepts are misunderstood.

Around the World…without arms or legs!

Nick Vujicic is a young Australian preacher and motivator who was born without arms and legs. He gives lectures on being handicapped and maintaining hope, as well as on the meaning of life. An accountant and a financial planner, he writes using a computer and uses a pedal to play drums with his toes. His first years of school were very challenging - he even considered suicide. Little by little, through his faith and the love of his family, the dead-end destiny that his life appeared to have led him to an around-the-world journey!

Guitar player…with his feet!

In 1987 in Los Angeles, Tony Melendez, who was 25 years old at the time and deprived of the use of his arms, sang for John Paul II while playing guitar with his feet. Dazzled, the Pope left the stage to meet him and give him a hug. Born handicapped, Tony, who is now married and the father of two children, is a well sought-after author and motivational speaker.

A scientist…confined!

The internationally renowned British theoretical physicist and cosmologist Stephen Hawking suffers from amyotrophic lateral sclerosis. He is almost completely paralyzed, and therefore, confined to a wheel chair. In 1985, he underwent a tracheotomy which rendered him mute, forcing him to communicate by means of a computer and a speech synthesizer. Despite his condition, his writings are best-sellers, and his research has earned him several awards. His healthcare is secured via his own personal wealth. Let us recall that in 1994, Canadian Sue Rodriguez, who was suffering from the same degenerative disease as Hawking, led a highly publicised fight for the legal right to assisted suicide.

Quality of life…more than a concept

Founded by Jean Vanier, L’Arche is a “network of homes” in almost 40 countries for “people with developmental disabilities”, some with severe disabilities. Emilie, who is twenty years old, works at L’Arche in Québec. With a sparkle in her eye, she shares: “I learn about what matters when I look after William, who is almost blind. He becomes happy whenever he sees a little bit of light. Also, the whirlpool and other small favours delight him.” Such words mystify those who believe that a child with Down syndrome should not be born with an impaired quality of life. Moreover, how can one not be impressed by the example of Chloé Sainte-Marie, a Québec actress and singer who took care of her spouse, filmmaker Gilles Carle, as he suffered from Parkinson’s disease and lost all mobility and ability to speak. In 2009, she founded the Maison Gilles-Carle that offers a family environment for the chronically ill and respite for their caregivers. Isn’t this inspiring? If dying with dignity is something we really do take to heart, then we should be investing in it.

When love is unbearable…

Bodily pain is certainly intolerable, but just as much, at times, is receiving too much love from others. We all wish to be loved for who we are. However, such love can be disturbing or antagonizing, especially when we cannot “do” anything in return; we can only accept it. This is quite a challenge and quite an invitation for a person who is dying or who is suffering from a degenerative disease. However, it is meant just as much for their close friends and family – as they discover that love sometimes leads us down the path of helplessness – as it is for those who are sick – as they learn to accept the gratuitous nature of loving-kindness.  Although it does not take away physical pain or dire prognoses, it does warm hearts and comfort souls, as their gazes express the unspeakable. Even without hope for recovery, another kind of hope remains… hope that cannot come from a word or phrase, no matter how pious they may be… This was probably what made St. Thomas Aquinas state: “I learn more from the crucifix than from all books combined.” Are you — or rather, would you — be able to allow yourself to be loved entirely, until the very end? Isn’t consenting to this the recognition of our own self-worth? Dying… but first of all LIVING… with dignity.