Jane was in the prime of her life when she was diagnosed with ALS. She had a husband, children and a busy, fulfilling career. She was respected by her colleagues and frequently sought out for her knowledge and wisdom. Life was good, which made the diagnosis of ALS an even greater tragedy.
Popularly known as Lou Gehrig’s disease, ALS destroys the ability of the nerves to pass along signals to the muscles. Sufferers gradually lose the ability to walk, to move their arms and hands, to hold their heads erect, to speak. Eventually, swallowing becomes difficult, then breathing. ALS is always fatal, but death usually comes slowly, muscle group by muscle group.
ALS doesn’t touch the mind, however, which makes it one of the cruelest diseases imaginable. In the final stages, it leaves its victims fully aware yet unable to move or communicate, as though bound and gagged by a terrorist.
One of the first things ALS destroys is your independence. Victims of this disease will tell you that they can enjoy a rich life, but only if they can depend on the help of compassionate caregivers.
Jane had a great ally in her battle against ALS—her husband, Charles. He was at Jane’s side when she first received her diagnosis. He was there to carry her as she lost the use of her legs and arms. He learned to understand her needs when she could no longer speak clearly. And on the day she died, he comforted her, prayed with her, and released her to God.
All of these difficult and heartbreaking things he did willingly, out of love.
What might have happened if Terri Schiavo had married someone better than Michael? He seems to have responded to her illness with anger and resentment, not on her behalf, but towards her. At a time when she needed him most, he abandoned her for another woman, without even having the respect to file for a divorce. He got on with his life and left her to die. In an earlier age, a man like that would have been branded a cad.
Charles was a very different sort of husband. He suffered greatly, from the agony of watching his wife wither and die, and from the physical and emotional demands his wife’s care created. But Charles took his wedding vows seriously. When he said “I Charles take you Jane for better or worse…,” he meant what he said. Because of love, he dedicated his time and strength to his wife’s care.
There are a multitude of illnesses and bodily malfunctions that can force unwanted dependency on functioning adults: ALS, stroke, Alzheimer’s, brain and spinal cord injuries and cancer, to name just a few.
Enter the Schiavo Protocol. Men and women who are incapacitated, even when they face no immediate risk of dying, may now be declared unfit for further life-sustaining care. If an estranged husband can achieve this result over the objections of his wife’s own parents, surely insurance companies, the Veterans Administration, Medicare, and other health-care funding agencies will realize that they might make use of this precedent as well, to cut off care for chronically ill patients when they have become a drain on our national healthcare resources.
A compassionate nation does not leave its wounded by the side of the road. The Schiavo Protocol is exquisitely Darwinian but appallingly inhumane. Completely apart from the dictates of any religious faith, the qualities of mercy, compassion and sympathy for the weak set us apart from every other species; they are core values in what we proudly call “civilization.”
We have crossed the Rubicon. In the name of some twisted view of compassion, the Schiavo Protocol will arrogantly permit the killing of vulnerable men, women and children. Passive euthanasia—the denial of food and water—will lead inevitably to active euthanasia: assisted suicide and “mercy killing.” Those who cannot walk the plank will be pushed off the boat.
There is no doubt that technology has leapt far ahead of our ethics. Many have said that we have no right to “play God.” Tens of thousands are having their life-spans extended by amazing surgeries and miracle medicines. These same technologies can prolong life when the possibility for recovery is slim, or none.
We need to be realistic about a patient’s prospects. We also need to respect doubt, and when there is doubt, to err on the side of life.
More than anything else, we must learn how to serve one another in love. Serving enriches us, especially when the one being served is unable to repay the debt, except through gratitude, except through the very gift of life itself. If we abandon the virtues of compassion, mercy and servanthood, our society will burn up in the fires of our own narcissism. We will become coarse rather than gentle, dog-eat-dog rather than merciful.
Jesus commands his followers to serve each other, and he demonstrated the sort of self-emptying he had in mind on the night before he was taken to the cross. In the upper room, during their last supper together, Jesus knelt before his band of brothers and washed their feet.
So if I, the Master and Teacher, washed your feet, you must now wash each other’s feet. I’ve laid down a pattern for you. What I’ve done, you do. I’m only pointing out the obvious. A servant is not ranked above his master; an employee doesn’t give orders to the employer. If you understand what I’m telling you, act like it—and live a blessed life. —John 13:14-17, The Message
Servanthood is tough sledding, but it builds character, it forges kindness, it makes us better people. Charles took a very difficult path. There came a time when he could have hastened his wife’s death. Instead, he left that to God, and honored Jane by serving her tenderly up to the very end.
I command you to love each other in the same way that I love you. And here is how to measure it—the greatest love is shown when people lay down their lives for their friends. —John 15:12,13, NLT
When I think about Charles and Jane, I see something extraordinary in human experience. I see genuine love in action. I see respect for life and human dignity. And I see Jesus.