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How one woman came to see that ‘not being a burden’ is a horrible trick of the mind

How one woman overcame suffering and disability to embrace life

By on Thursday, 12 April 2012

I have just read a perturbing book. Entitled An Exclusive Love, it tells the story of an elderly, professional Hungarian couple, resident in Copenhagen, who committed suicide together in October 1991. Written by their granddaughter, Johanna Adorjan, many years after their death, the book is her way of trying to work out why her grandparents, both atheists, took this drastic and final step. It turns out that her grandfather, a retired eye specialist, was suffering from a terminal illness and his wife decided she could not live without him. Painfully piecing together their last day – the dog taken to a friend’s house, the newspaper cancelled, the prescription for the overdose collected from the chemist’s, gifts for relatives laid out on a table etc – Johanna Adorjan does not judge what they did. Yet her memoir is heavy with a sense of loss, guilt and unfinished business. She doesn’t use phrases like “dying with dignity” or “being in control”; one senses that she is still struggling to come to terms with the emotional fallout from their decision.

It reminded me of the remark of an old lady, made to me years ago: “Suicide is incredibly selfish.” Obviously she would have made a distinction between those who take their lives when the balance of the mind is disturbed and those, like the couple described in this book, who make a conscious, rational and deliberate decision to kill themselves, regardless of the impact on others.

At the time of reading An Exclusive Love I also came across an article in The Tablet for 31 March, written by Mark Dowd and entitled “Painful Choices”. It was about Alison Davis, a founder member of No Less Human, the division of SPUC devoted to the disabled, and how, despite her many and complex medical problems (she suffers from spina bifida and increasingly painful symptoms associated with it), she has made the decision to embrace life. I happen to know Alison and her long-term carer, Colin, so was pleased to read this inspiring article – later broadcast on the BBC World Service last Saturday morning as the first in a two-part series called “Choosing Life”.

As the article and the broadcast describe, for ten years in the 1980s Alison actively wanted to die. She “couldn’t see a way forward” and attempted suicide – even buying a copy of Gray’s Anatomy in order to work out the best way to cut her wrists. Fortunately she was found by friends in time, taken to hospital and revived – much against her will. At the time she believed she was doing her friends and family a favour; she would stop being “a burden” on them. Now, full of gratitude for her friends’ intervention, she sees this as “a horrible trick of the mind.”

Several things conspired to give Alison hope again: she got involved with SPUC, she met Colin who decided to give up his own ambitions to care for her, she went to Lourdes – and gradually began to see her own sufferings in the light of the Cross. She also became a Catholic and got involved with a charitable project for orphaned and needy children in India. “Looking outwards” rather than inwards was the key, she says, and realising that her problems had a positive purpose in bringing out the best in others; helping her helped them too. Despair gave way to hope.

Mark Dowd, a sensitive and sympathetic interviewer, asked Alison the obvious question: what about those with a terminal illness or in constant pain who lack family, friends or faith to see them through? Her reply was emphatic: “I think I would want to say to them, as gently as possible, that what one person does impacts on many more people.” We are not just autonomous individuals. She adds, “You can’t second guess what is coming next” in your life. For Alison, now needing daily morphine injections for “intractable pain” and often literally prostrate with her sufferings, life still has meaning, love and hope. Colin adds that acceptance of euthanasia as a solution means people “are not willing to embrace the challenges of life.” He is certain that meeting Alison has made him a better person and forced him to face up to ultimate questions about suffering, death and life’s purpose.

Alison defines “dignity in dying” thus: “As natural and pain-free as possible, in God’s time, with people who can support and help you”. Her outlook is in stark contrast to the sad elderly couple in Copenhagen who chose to close their curtains, lie down on their bed and shut out the world.

(Episode 2, which provides an alternative viewpoint, will be broadcast this coming Saturday at 7.35 on the World Service.)

  • Oconnord

    This article describes two love stories, both are tragic, romantic and heart-rending. They are different in the most extreme way but both display loving relationships. 

  • Aunt Raven

    When old people with impaired health say they “do not want to be a burden,” this is often code for “if I lose my independence I don’t want to live” when in fact being dependent is the best way to learn humility and gratitude for others who care for us. Some of us only grow up when our youth is long past!  It is humbling to accept  care from others because it is love, love we do not feel we deserve or adequately return.  What we all need to realize is that no-one “deserves” love, it is a gift.  

    If in euthanasia we take our own lives, we ungratefully leave behind those who love us, rejecting the gifts of love they give us with their sacrifices of time and labor and resources. By our self-centered suicide, we leave them hurt, and feeling their nearness and gifts were not worth having when our immobility and pain needed these . 

    Our grandchildren, taken up with their computers and facebook and lives beset by economic uncertainty and cultural trivia cannot learn compassion and selflessness better than by taking meals and helping clean house for elderly, decrepit relatives; but soon they find (as my grandchildren have) that caring for the helpless causes an unexpected joy and a feeling of empowerment in their ability to turn  their youthful energy and strength into the power to help others less fortunate than themselves– and discover that far from being a burden, this caring is a privilege which causes unexpected joy and self-esteem.   

    Young people learn from their elders’ attitude towards euthanasia either that 1) being old or incapacitated makes one worthless, or 2) that every human life is a treasure to be cherished.  And when the young grow old, they will model these behaviours themselves, having internalized the message their elders taught them–one way or another–of the true worth of a human being when they are no longer “useful” to a shallow and materialistic society.  

  • Jeannine

    I believe 1 reason God permits such suffering as described in this essay is His way try to help us re-evaluate our lives which should include placing Him first. 

    But, I also believe that God allows suffering to occur in one’s life so that other people have the opportunity to be kind or charitable or caring to the one suffering. Isn’t that what it is all about: to serve others?