End of Life

Emily’s Ordeal

She fell unexpectedly while jogging, striking her knee hard on the pavement. Emily Butler sat whimpering, cursing, cradling her bloody knee and wondering why her leg had lost its strength. She limped home, occasionally sitting on a curb as waves of weakness threatened to pitch her back to the pavement. After an hour or two, the strange and frightening weakness disappeared as quickly as it had come. Her nasty scrape healed, and the unpleasant incident was forgotten. But it was only the beginning of Emily’s ordeal.

Emily’s world crumbles

Emily and John Butler married while in university studying to be teachers. They moved to Salem, Oregon, a year or two later to begin their careers: John taught math and Emily was a physical education instructor. In her second year of teaching, Emily started to drag her right foot, and  tired easily. One morning, Emily awoke unable to get out of bed. Her entire body felt leaden, slow and sluggish. In a state of panic, John called 9-1-1. Emily’s world crumpled into terror under the blaring siren of the ambulance rushing her to the hospital.

After a series of intimidating medical tests, the doctors diagnosed Emily with multiple sclerosis. John put on a brave face. When Emily was finally discharged from the hospital, she arrived home to find friends and family there to greet her. Everyone was so sweet and accommodating. Too sweet, too accommodating.

Her wheelchair was a daily reminder for the formerly vibrant gym instructor that her disease was advancing. Emily’s short-lived teaching career was over, and insurance only covered her medical bills for two years. Money intended for other things was used to make the Butlers’ home accessible to Emily. As paralysis crept into Emily’s hands, she needed special cutlery to feed herself. When her arms ceased to function, John hired a part-time aid to feed, change and dress Emily. In addition to teaching full time, John tutored at night to cover the rest of Emily’s daily care. Emily and John did not talk about the future anymore. John began to brood.

It’s hard to say when Emily began to feel like a burden on John. Perhaps it was when she would hear his irritated sighs while putting her to bed. Maybe she began to feel their romance dying when John started sleeping on the far side of the bed with his back to her. Maybe it was when she noticed he only kissed her forehead and nowhere else. John had difficulty hiding his revulsion at diapering Emily. Even though friends and former colleagues stopped calling, Emily and John still had a social life. They went out on “dates” regularly for suppers on Thursday evenings. It was their “special time.” John would cut her meat and tenderly feed her. Their “special time” would often conclude with sighs and more brooding.

I want to die

One Friday afternoon John came home from work and found Emily with puffy red eyes, looking out the living room window. After a few minutes of the usual silence, Emily slurred, “I don’t want to do this anymore, John.” More silence.

Emily felt like a burden on John. She told him that she wanted to die.

John met her with icy, emotionless eyes. His face was like stone.

“You don’t want to die, you’re just having a bad day,” he said coldly.

Emily slurred, “I don’t want to do this anymore, John…”  Emily felt like a burden on John. She told him that she wanted to die.

The bitter end

John’s impassivity toward Emily’s cries of anguish and despair spoke volumes. After that day, their relationship began to wither. Over the next year they temporarily separated twice, and Emily’s mother had to fly out and take care of her. When John returned to try and patch up their marital problems, Emily would begin to talk of suicide. John’s weak responses or silences poisoned reconciliation attempts. She knew she was a burden to John and her mother. Emily would cry unexpectedly. John knew that depression was part of her disease.

Eventually, Emily got her wish and was legally euthanized. At her funeral, John’s friends consoled him, saying: “It’s for the best. It’s not right for an active, athletic woman like Emily to spend the rest of her life ‘languishing’ in a wheelchair or bedridden. Now she’s free from her suffering.” And it warmed John’s heart to know that Emily—his precious, independent Emily—chose the time and place of her own death. She died with dignity! As he stood at Emily’s gravesite, he looked up into the bright blue sky and let the sun warm his face. A great weight lifted from John’s shoulders. His sorrow would pass. It was a new day.

Did Emily die with dignity? No, she did not. Granted, it is a horrible thing to lose control of physical functions. I know, I have progressive multiple sclerosis too. It is far worse, however, to feel like a burden to those we love. It is a terrible thing when human worth is not validated. Everyone needs validation. Everyone needs to be loved and affirmed.

To love and to be loved: to be valued and included in the living process cuts to the heart of humanity. People with disabilities know when they are viewed as burdens. They can see it in people’s eyes filled with a combination of pity, irritation and fear.

People can and will despair of life when denied the inclusion of being loved and valued. Each and every human life has inalienable worth and dignity. Why? Every human life bears the unmistakable image of God. Emily’s ordeal did not begin with a diagnosis of a terrible disease; it began long before that by not understanding that her value came from this image and nothing more. Emily was never guaranteed worldly success, beauty or happiness in romance. She could only rest in the knowledge of God’s perfect love, through Jesus, a Christ she did not know. In the end, He was all that could be relied upon in Emily’s ordeal. And so it is with you and me.

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About the author

Mark Pickup

Mark Pickup is an incurably ill and disabled Canadian with multiple sclerosis. He is a disability-inclusion advocate who utterly opposes euthanasia and physician-assisted suicide.