My father, Read Schuster, a humanist from his first breath on this earth, was a voice in the wilderness years ago. He had a living will before there were such things and was an early member of the Hemlock Society. I grew up in an environment where such thoughts were commonplace and not out of the ordinary, but I had never been a vocal advocate until now.
It has taken the untimely and brutal death of my father to make me sit up and say, "This is not right. Dad was the one who was right!" And so now with his passing, I take up his banner, to protest the unjustness of the kind of death this very intelligent and thoughtful man had to endure as well as the ongoing aftereffects on his family.
If our story can help others to understand, to possibly change thinking in order to change a law, then it needs to be told and told often.
Just before Thanksgiving of 1989, my father was diagnosed with Amyotrophic Lateral Sclerosis (A.L.S.), or Lou Gehrig's disease. Dad had been undergoing extensive tests to determine the cause for his slurring speech and rather sudden loss of walking stamina. I was with my father the day the doctor pronounced this sentence. I felt a lead weight drop inside of me.
My dad calmly asked the doctor for a prognosis. The doctor said that many people live for four or more years or longer with the help of certain devices. My father told the doctor, as he was to do many times, that there would be no such devices for him. That when the time came, he would take care of it himself. That he would not subject himself or his family to a nightmare existence.
What is A.L.S.? The brain messages to move all muscles, voluntary and involuntary, break down and finally stop being received. Walking gets worse and worse, taking one from a cane, to a walker, to a wheelchair, to bedridden, to total paralysis. Stomach muscles go so that a person loses the ability to hold the body upright. The tongue gets "thick" and lip formation impossible, so that intelligible speech is finally lost. Communication is possible by writing, until that skill is lost.
The living nightmare is the throat. The ability to swallow grows progressively worse. Messages go so haywire that the body doesn't know whether to open the esophagus or close the windpipe, and so, for self-preservation, the body opens everything. Water goes down the windpipe and results in choking. Food goes wrong, also resulting in choking. Liquids are as likely to come out the nose as make it to the stomach.
In my father's case, the disease started in an area that is the ending place--the throat. He was diagnosed in November 1989. By March his speech was almost completely unintelligible. By June he had to write everything. No matter how slowly he spoke, it was mush. By Christmas of 1989, Dad was coughing quite a lot while eating. May 1990 saw his last sip of water. He rediscovered nectars and a liquid product called Ensure. By August he was choking on these.
An irony and saving force during all of this was that the disease did not affect his ability to drive a car. He lived for the afternoons when he dressed himself up and escaped his confines behind the wheel of a car and drove to do errands at the bank, post office and grocery store. When it became impossible for him to talk, he carried notes explaining what was wrong and what he wanted. When it became too difficult to get in and out of the cars one of my children, David, 14, or Jennifer, 18, would go with him and "be his legs."
The first of August, 1990, saw an end to the driving. He could no longer lift his leg from gas pedal to brake. At this point he and my mother, who is handicapped, felt it was time to move to our home.
During that long, emotional summer, my parents liquidated everything, the sum of 44 years together, and he disposed of cherished personal items as he wanted.
The summer of 1990 drew to a close and my father drew his life to a close.
Labor Day weekend saw him unable to eat most anything, drinking a major problem, choking a daily constant, little fluid for the kidneys, constipation and the the need for daily enemas, no speech, breathing labored, unable to brush his teeth, unable to kiss, unable to blow his nose, unable to control saliva in his mouth, unable to stand upright, able to walk very labored, bent over his walker, reading becoming too exhausting, and the right hand starting to shake and turn in. At this point, my dad would not consider the stomach tube or the soon-needed breathing tubes.
He was faced with a death by starvation, choking or asphyxiation. All of this going on in the body while his mind stayed sharp and alert. Never able to break out of that barrier of forced silence. Seeing his writing skills going next. Not living as he had lived, excited by each day. Eager to learn something new, work in the yard, take care of my mom.
His thoughts were of us, his family, and my mother especially, on this day. We were not there. He could slip away. This was the only solution open to my dad. He could not swallow pills, but he could study an encyclopedia to learn exactly where to place a fatal bullet.
I, his daughter, do not lament the fates that gave my dad this illness. I do feel extreme anger that he had to die in this manner.
He should have been able to die whole, in his bed, with us to hold his hands telling him again how much he meant to us, how much he had touched our lives. He should have been able to take an injection to peacefully slip off to sleep. With the ring of a gunshot, my dad was at peace.
But for those of us left, it wasn't over yet. Because a gunshot is classed as a "violent death," the area is considered a crime scene and no one is allowed near. Hands of the deceased are covered in plastic for ballistic tests. I would have liked to have held my father's hand on the way to the ambulance. My mother, a very intelligent and tough lady, would have liked to have kissed a warm forehead goodbye. Since it was a "crime scene," we had to observe from afar. My wonderful husband was there to meet both my mother and me at the door, and was the one to tell us that "Dad went away the way he said he would." He was left with the job of cleaning it all up after the police had taken Dad away. There is no group to call on to do this. The police don't do it. The family does.
After things settled down that Saturday, we discovered the letters he had left. Those for us and those to be mailed, to friends, other family members, and to his two doctors. Dad had also pinned a note to the police department on his shirt explaining his reasons and, in typical Read Schuster fashion, managing to write a small lecture article to the authorities about a society which boxes terminally ill people into a corner.
My dad was able to close his life. He was able to dispose of his possessions as he wanted. He was able to tell us how much we meant to him. He was able to do many things before going that many of us are never able to do. But he should have been able to do it with an injection. There should have been a Dr. Kevorkian for him.
Our society frowns on the suffering of animals. We do not force an animal with an incurable disease to keep living in pain--"to put an animal out of its misery" is acceptable in our society--indeed, it is regarded as kind and humane.
But suffering humans do not rate! Their wishes are not a factor. Human life at all costs is mandated by religious people.
Anyone who ever has had Sodium Pentothal for surgery knows it would be an easy way to leave the world. One second you're here--the next, painlessly, you are gone. Why should people have to drag themselves to outbuildings and literally blow out their brains when acivilized, humane death is possible?
Prolonging dying frequently enriches nursing homes and hospitals and their staffs. But it decimates loved ones who stand by helplessly. It is needless.
Those who wish to die painfully by degrees now have that option. Those who wish to die painlessly, at an appointed time, should have that right.
Anne Nicol Gaylor
Freedom From Religion Foundation, Inc.
For reprints of this article write to the Freedom From Religion Foundation, Inc., PO Box 750, Madison WI 53701, working to keep state and church separate and to promote individual freedom.
For more information about this topic, see the Euthanasia World Directory.