The Power of Choice: The Right to Live and the Right to Die Robert C. Horn III

It is amazing to me how rapidly one can plummet from the heights of the mountaintop to the depths of the valley. Or at least how fast I could. And did. It was virtually instantaneous. One moment life was glorious and the next it appeared to be over.

In the spring of 1988 I felt on top of the world. My life couldn’t have been much better. The academic year was a truly outstanding one for me. It began with the award of a sabbatical for the fall semester. I was doing research on Soviet-Vietnamese relations in the hopes of expanding a monograph I had written on the subject (during a recent fellowship at the RAND Corporation) into a book. Thanks to Asian colleagues I met at a series of seminars at the East-West Center at the University of Hawaii, I was invited to speak and conduct interviews in several Asian countries….

More special things happened in the spring semester. For one, our Model UN program made its long-discussed venture from the Far West regional con­ference to the National Conference in New York... At about the same time, I was informed that I was to be one of that year’s recipients of the Distinguished Professor Award….Finally, I spent almost two weeks in Moscow in mid-May at the invitation of the Institute of Far Eastern Studies of the USSR Academy of Sciences….

Granted, I was not wealthy financially or in material terms but I consid­ered myself rich in areas of far greater importance: family, religion and employment. Judy and I had a loving and fulfilling marriage and our children (Jeff then in his first year in college, Chris in his junior year in high school and Laura in junior high) were doing well in all respects and continued to be a source of joy to us. We were active members of a dynamic Methodist church that more than met our spiritual needs, deepened our faith, and was filled with wonderful people. Finally, we both had jobs we enjoyed, college teach­ing in my case and directing a pre-school in Judy’s, and that we felt made a contribution to the community. Professionally, my research was going very well.

So what was next? Immediately, there was another trip to Asia. I had been asked by the United States Information Agency to embark on a three ­week speaking tour in Asia that summer under their auspices. The trip would include Australia and New Zealand, where I had never been, as well as Japan and would give me the opportunity of seeing a great many friends, personal and professional. I was eagerly looking forward to it.

The “roll” I was on was about to come to a sudden and devastating halt. The ancient Greeks said that “pride goeth before the fall.” I don’t really think my pride caused it but I was about to learn about the fall in a far too person­al, first hand and major way. I had been having spasms in my left arm. The visit to the neurologist is, unfortunately, etched indelibly on my mind. (The only thing I can’t recall is the name of the doctor; I suppose I have repressed it.) After he examined me, particularly checking my muscles and reflexes, he asked me what I thought might be the problem. “I don’t know,” I replied, still clueless. “A pinched nerve?” Then he said, with considerably more medical accuracy than bedside manner, “Have you ever heard of Lou Gehrig’s dis­ease ?“

Of course I had; Gehrig was one of my baseball heroes. Then I went numb. The blood drained from my head. I couldn’t finish getting dressed, and I had to lie down. There is no good way to deliver such news but his abrupt and harsh pronouncement was awful. The only “consolation” he could offer was that he would have to do a number of tests before a diagnosis could be confirmed.

I knew what Lou Gehrig’s disease meant: progressive loss of muscles paralysis, leading to death within a few, short, agonizing years. I was never going to be normal again. And, very soon I was going to die.

A short time later, I was officially diagnosed as having amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s Disease. ALS is a degenerative neuromuscular disease that swiftly robs the victim of voluntary muscle control, including those necessary for breathing. The average life expectancy after diagnosis is two to five years. ALS does not affect the mind, so on is perfectly aware of his or her physical deterioration. By the end, the individual typically is unable to move, talk above a whisper, eat without choking or breathe without difficulty.

ALS is a terminal disease. It is progressive, unrelenting, merciless. Its endgame is inevitable.

Over the next several months, whenever I reached a turning point in the progression of the disease, a new obstacle, someone suddenly appeared with a solution. Every time I was confronted by a new hurdle, someone became hurdler. God does indeed work in mysterious ways sometimes. The more I think about it, though, the more ways don’t seem so mysterious because they have been so consistent, Shortly after a problem pops up, a person or a group of them with an answer will, too.

My physical deterioration was extremely difficult for me because of the new limitations it imposed almost weekly. I had been riding my bicycle to the university for almost twenty years. It was devastating to me when I had to give it up. When I could no longer drive a car, students of mine Steve, Ram and Dan - volunteered their assistance to get me to and from the uni­versity. When hauling me in and out of a normal car became too awkward and I was pretty much confined to a wheelchair, Lew and Joyce offered to have their van converted to make it accessible for my use. When I began to lose my energy and stamina, colleagues at the university were able to find ways to lighten my teaching load. When I had trouble writing, Gretchen vol­unteered to be my right hand. And as my voice weakened, she came up with the alphabet chart that I still use for communicating. Gretchen’s husband Bruce became the Director of Player Personnel for my fantasy baseball team—bragging, we finished first in 1995 and 1998.

Two prominent examples of the right people appearing unexpectedly on my horizon at the right time were my “computer gurus,” Jan and Diane. They were exceptional. As the ALS progressed and left me too weak to raise my hands to the keyboard, along came Jan. 1 hate to think of how many hours he must have put in on my behalf designing, from scratch, a program that would enable me to type with my eyebrows. He was never satisfied and was constantly working to improve his original creation. Every time he came up with a new version, he would spend a whole evening with me in my study having me test it and make suggestions. Then he would go home and work on it some more. We finally settled on version six or seven! Jan’s dedication, especially for someone who was volunteering his time, was just remarkable. His invention worked beautiful for three years until my weakening eyebrows made it too difficult for me to use. To say that I was discouraged would be a vast understatement. And then, voila, along came Diane, a specialist in adaptive computer equipment. She was the one who noticed my slight leg movement and then designed and installed a terrific system which utilizes that tiny movement. As a result, for the last six years I have been typing with my foot which, as a friend pointed out to me, is quite appropriate for a retired soccer coach.

When I felt I needed some sort of creative outlet, a means of communi­cating what I had been reading and what was in my head about the collapse of the Soviet Union and the end of the Cold War, Dave and Maria, the pas­tors at Northridge United Methodist Church, agreed to allow me to start writing regular articles for the church newsletter. The more than one hun­dred articles I have written over the past years have done absolute wonders for the self-esteem of a physically helpless and completely dependent person. It gave me the confidence and motivation to write my book, How Will They Know If I’m Dead? Transcending Disability and Terminal Illness.

Another example seems to be straight out of the “Twilight Zone.” One day my occupational therapist came by to see how we were doing. Typically, she wandered through the house making suggestions for changes that would keep us a step ahead of the disease. This time her “only” recommendations were to enlarge the doorway from the bedroom to the study and raise the floor of the study to the level of the bedroom, No small feat! The very next day, out of the blue, our friend Bill, a contractor, dropped in for a visit. During our conversation he asked if there was anything he could do. I casually men­tioned the occupational therapist’s suggestion and in three days it was com­pleted. That still gives me goose bumps.

A final example. I suspect, almost to the point of conviction, that our children have formed a conspiracy among the three of them to make sure Judy doesn’t have to deal with me alone. As evidence, I submit the fact that a week before our daughter Laura, who had just graduated from college, left for Japan, her brother Chris moved back from Colorado and took up resi­dence with us. When he married and moved out, his brother Jeff returned from Japan and lived at home, And as Jeff went off to graduate school, Laura returned. Isn’t that awfully suspicious? In any case, we enjoy having them home.

ATTITUDE

In a packet from the Michigan ALS Association I found a brief article by Charles Swindoll which was excerpted from another ALS chapter’s publica­tion. It is entitled “Attitude” and it struck a responsive chord in me. It is applicable to anyone, handicapped or not. (This was confirmed by the enthusiastic reception of dozens of people when I included it in an article I wrote for our church newsletter.)

Mr. Swindoll writes: “The longer I live, the more I realize the impact of attitude on life. To me, attitude is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company, a church, a home.

“The remarkable thing is we have a choice every day regarding the atti­tude we will embrace for that day. We cannot change our past. We cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.”

I think he hit the nail squarely on the head. The simple fact is that we cannot control external events or forces. That is the reality. But another part of that reality is that we do have control over how we react to what happens to us. Our attitude is of enormous significance and should not be underesti­mated.

This is not meant to imply that attitude can alter the nature and course of disease. Or can it? There is a heated debate about this in the scientific lit­erature. There seems to be an emerging consensus that social support, as opposed to social isolation, positively correlates to longevity in terminally ill patients. Much less agreement exists about the role of other psychological variables. Disease cannot be simply wished away by a positive attitude, but numerous recent studies have demonstrated a link between attitude and sur­vival rates. For instance, people who are defiant and “battle” their disease have been shown to live longer than those who just give up.

One very interesting study along these lines which examined ALS patients was recently completed. It monitored the survival status of 144 vol­unteers for three and a half years. At the beginning researchers tested their subjects on a range of psychological variables and then divided them into three groups based on such factors as depression, hopelessness and perceived stress. The findings are instructive. Of the group with the highest degrees of these factors, the highest level of psychological distress, 82 % died within the time span of the study. In the middle group, 65 % died. In the group with the lowest level of distress, however, only 32 % died! (Another study that I found particularly intriguing suggested that just having “an attitude” is good for you. Researchers at the Johns Hopkins Medical School divided women with breast cancer into two groups based on length of survival, They discover that the long survivors were considered less cooperative by the hospital staff. Right on!)

Even more important, I think is the impact of attitude on the quality of life. That is really the point and, on this, there is no substantial argument. The mind and body are closely intertwined. This relationship and its effects on health and quality of life are persuasively presented by Dr. David Spiegel in his book Living Beyond Limits. His conclusion, like Mr. Swindoll’s and mine, is that a positive attitude can greatly enhance the quality of one’s life.

If nothing else, as a Hallmark greeting card sent to me by my friend Rosalyn (the church secretary!) said, “A positive attitude may not solve your problems but it will annoy enough people to make it worth the effort.” That, alone, should count for something.

One thing I do know: For me, a physical disability is preferable to a mental one. In This Far and No More, an ALS victim, who eventually succeeded in obtaining assistance to end her life, discusses the relative “merits” of ALS and Alzheimer’s. Although her internal debate remains inconclusive she writes wistfully of a disease where you would not be aware of your steady physical decline. Not me. My progressive deterioration was frustrating and depressing in the extreme but I’ll still take that over losing my capacity to reason, to analyze or to remember. For, as the remarkable Dan Quayle -remember him? — misspoke in one of his innumerable verbal gaffes, “What a waste it is to lose one’s mind.” Indeed!

My mind, such as it is, has been my salvation. It still is. I am no brilliant thinker but I do enjoy the world of the mind, which is only appropriate for someone who has spent his entire life in school, either studying or teaching — and always learning. I am interested in and curious about, an unceasing flow of books I am anxious to delve into and a number of topics I would like to write about. My mind is my means of setting goals and striving to achieve them.

My area of expertise and teaching responsibility as a college professor was international relations with a specialization in the Soviet Union and Soviet foreign policy. Several common themes ran through all the courses I taught. I emphasized — ad nauseum. I am sure, to my students — one of these in par­ticular because it is crucial to understanding how and why states in the inter­national arena behave and interact with each other. It is also an essential consideration in policy making. At least it should be — see, for example the discussion in Robert S. McNamara’s book on American policy in Vietnam, In Retrospect: The Tragedy and Lessons of Vietnam. It is equally impor­tant, I think, in interpersonal relations. That theme or issue is perception.

What the study of perception in world politics teaches is that so-called “objective reality” is actually the subjective perception and interpretation of situations, events, interests, and other actors by various decision makers in every state and other entity. States pursue their interests based on their par­ticular perception or view of reality. That, in turn, is shaped by the complex interplay between a whole range of factors and considerations, including geography, economic strengths and weaknesses, history, ideology, military capabilities, the political situation, and various intangibles such as national character. All of this means that in order to understand why the old Soviet Union or the United States, or Malaysia, Israel or Ecuador, took a certain for­eign policy action, you have to put yourself in “the other guy’s shoes.” You have to see the situation through his eyes, understand that state’s perception, its perspective.

So what, you might well ask? Is this somehow relevant to the matter at hand or just some extraneous lecture pulled from a musty file? Simply put, the study of perception reminds us that there are different ways of looking at the same issue, event, problem, or situation. And this is true at all levels of life, from the global to the personal. The linkage between perception and living life is that we act on what we perceive. In other words, our perception, or per­spective determines how we live. This makes the discussion relevant for my life, indeed for all of our lives.

What is my perspective, then, on my life? Not oversimplifying the ques­tion very much at all, it comes down to that old conundrum: Do I see the glass as half full or half empty? Before the diagnosis of ALS, I had always viewed the glass as half full. I was an unabashed optimist, albeit tempered with a certain degree of realism. But how about now? Admittedly, there is not much to like, and a great deal to find intolerable, about my current situation, It is difficult, to say the least, living under the sentence of a terminal disease, knowing that I will not get better, only worse. I have to try to avoid reflecting on longer-term concepts of time, such as “never” or “forever,” They are psychologically painful. Physically, I’m a mess. I can’t do anything for myself, have virtually no workable muscles and can’t move. It is frustrating and mad­dening to be so absolutely helpless and so totally dependent on others. If my head lolls to one side or the other, as it often does, it stays there unless and until someone notices and props it up again. If an arm slips off the armrest of the wheelchair, it will just dangle by my side until someone retrieves it.

There is ample evidence to think the glass is now at least half empty. Well, it almost is, but not quite. There is more to life than physical ability. There are the mental, emotional and spiritual abilities or worlds to consider as well. In these worlds, I haven’t changed; I am still a vibrant, healthy and independent person. I can think, reason and analyze, remember, read, write, learn and communicate. I can love, feel happiness and sadness, be enthusias­tic, get angry, have highs and lows, feel joy. I can believe, hope and have faith. This adds up to an extensive list of things I can still “do” in spite of my disease.

This brings me back to the question of my overall perspective of my sit­uation. I am convinced that what I have left is more valuable than what I have lost. I believe that the things I can do are more important than those I can’t. The key for my psychological well-being is to focus on what I can do, my abilities, rather than on my disabilities and limitations. To dwell on the latter is to wallow in grief and self-pity. Such wallowing is, for me, sometimes unavoidable and occasionally even necessary. But to concentrate on the for­mer is to invite optimism, achievement and new opportunities.

All in all, I would say that the glass has lost some of its water but it is still half full.

In the game of life, it all comes down to how you keep score. If dying is losing, then we are all losers because we are all terminal. The game makes no sense. A far more meaningful basis for scorekeeping is the quality of life. Quality rather than quantity or longevity. How do you assess quality? That very much depends on perception.

Quality is not determined by the normal bumps in the road which every­one experiences. In life, as the bumper sticker crudely but truthfully states, “Shit happens.” Indeed it does! Mary Chapin Carpenter sings about the fact of life that sometimes you’re the bat and sometimes you’re the ball, that “sometimes you’re the windshield and sometimes you’re the hug.” I have always liked the way Judy’s brother, Don, has expressed this basic truth: “Sometimes you eat the bear and sometimes the bear eats you.” If you can’t deal with the naturally occurring and inevitable downs, the game of life is not for you. You have to accept the bad with the good. Most of us have learned to do that. We have also learned that, as I told the girls on my soccer teams, the test of our character is how we respond to adversity and setbacks, losses, disappointments, and defeats.

My response to ALS has run the emotional gamut. And gauntlet. I have experienced despair, fear, resignation, anger, and the dashing of unrealistic hopes, amid a torrent of emotions, Some time ago, I arrived at an acceptance of my condition and of reality. My “psychological problems” now relate not so much to my physical limitations or the fatal nature of my disease per se, but rather the additional responsibility I have caused to those closest to me.

On the other hand, I have been surrounded by so much unconditional love that it is overwhelming. Especially by Judy. But from so many others, too. My favorite passage in the Bible has long been from First Corinthians. Paul wrote to the church in Corinth, “If I speak in tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal.” Well, no gongs or cymbals here! Family and friends are the instruments and reflection of God’s love and I am continuously uplifted by them. They demonstrate that, as Paul further wrote, “Love bears all things, believes all things, hopes all things, endures all things.” That passage means even more to me now. It has become very personal and very real.

There have been studies which show that social support, as opposed to social isolation, positively correlates to longevity in terminally ill patients. This doesn’t surprise me at all. From my own experience, I can testify that social support like Judy and I have received also positively correlates to QUALITY of life. That is even less surprising.

Where does all this leave me? Fundamentally, I believe that I am as close as I will ever be to achieving, or being granted, the serenity so eloquently expressed in the Serenity Prayer by Reinhold Niebuhr: “God give us the grace to accept with serenity the things that cannot be changed, the courage to change the things which should be changed, and the wisdom to distin­guish one from the other.”

I love that prayer! I also think it fits my situation absolutely perfectly. I HAVE to accept my disabilities if I am going to keep on living. There is no alternative, except, I suppose, insanity and I am not quite ready for that. I definitely REQUIRE the courage to do all that I am capable of in my life. Finally, I also NEED to be able to distinguish what I can change in my life from what I can’t. All of this adds up to the need to focus on things I can do and not to dwell on those I can’t.

CHOICE

For most of the twentieth century, and particularly during the nearly 30 years of Stalin’s murderous rule, communism required Russians, even dissidents, to adapt and make compromises in order to survive. It is the same for people with disabilities. We, too, are forced to make adjustments, adaptations, and compromises to get on with life. After all, what’s the choice?

In fact, people confronted with physical disability and terminal illness have, at least they SHOULD have, three basic choices: to die, to exist, or to live. I am not ready to die. And, as long as I continue to breathe, even with the aid of a machine, I will try to live life to the fullest extent possible rather than be content merely to exist. That’s my choice.

Some time ago, I saw a report on CNN that left me disturbed and reflec­tive. It was about the controversy surrounding the issue of doctor-assisted sui­cide in Canada, a complex and thought-provoking issue in its own right. What personalized it for me, though, was that the three people the report profiled who all wanted to end their lives were suffering from the same dis­ease as I am, ALS. Moreover, the impact of the report was intensified by the condition of the patients. With varying difficulty, all could eat and talk and none was on a ventilator.

Since then, there have been several highly publicized cases of ALS patients seeking medical assistance to end their lives humanely and with some dignity. Most of these cases have been in Michigan, and have involved Dr. Jack Kevorkian. I have a problem with this retired Michigan pathologist. In fact, I have a lot of problems with the man appropriately nicknamed “Dr. Death” because he has assisted in more than 130 suicides. I favor a terminal­ly ill person’s right to choose. But if he or she chooses assisted suicide, I believe certain preconditions have to be met. Kevorkian has ignored most of these.

My concern stems from several sources. First, my father was a Michigan pathologist, at Detroit’s Henry Ford Hospital. He was very active in his pro­fession, nationally and internationally, and I think he would be appalled at Kevorkian’s behavior. Second, although I have lived with ALS for nearly eleven years, I am still classified as terminally ill but the last thing I want is a house call from Dr. Death.

More to the point were Kevorkian’s actions on the “60 Minutes” episode in November, 1998, where he injected ALS patient Thomas Youk with a lethal dose of drugs to allow him to die. What did Kevorkian provide besides his killing expertise? Psychiatric counseling to make sure Youk wasn’t suffer­ing from depression, a common condition among those who want to commit suicide but treatable by a psychiatrist? No. Any kind of counseling, including a presentation of the alternatives to death? No. Medication or exercises to alleviate Youk’s unspecified pain? Again, no. Any recommendations of books or articles by or about people living productive and meaningful lives with ALS, (immodestly) such as mine? Yet again, no,

No doctor worth his Hippocratic Oath would have ignored such precau­tions as Kevorkian did. Of course, I don’t know if it happened and just was­n’t shown on the program. But if it didn’t happen, I support Kevorkian’s con­viction of second-degree murder. He did the country a service, I think, by bringing the right to die into the public debate but it is long past time for Kevorkian to sit down and shut up and keep his hands to himself.

There were options, contrary to what Youk’s family said after his death. Ultimately, though, it gets down to quality of life and the patient is obvious­ly the best judge of that. I have had a high quality of life since going on the ventilator eight years ago but the symptoms of ALS vary widely and I recog­nize that my decision isn’t for everyone. I just don’t think Dr, Jack should be part of the decision-making process.

My choice, to go on living in spite of the disease, doesn’t make me “bet­ter” or more “courageous” than those who opt for alternative solutions to the challenges they face. The personal struggles of people against life-threaten­ing illnesses do not lend themselves to facile or self-righteous judgments. These are highly individual battles that depend on many factors, from per­sonal outlook and philosophy, to the specific situation and circumstances of the patient, and, significantly, on the nature of the illness itself.

In considering ALS specifically, there are at least three major reasons to avoid being judgmental in the evaluation of how a particular victim of the disease reacts to it. For one, its symptoms vary dramatically from patient to patient; one person’s experience with the disease is no guide to someone else’s. For instance, one of the women in the CNN report suffered substantial physical pain. I have had considerable discomfort but minimal pain — other than, earlier, from falls or muscle cramps in my legs and, more recently, when a caregiver turns me awkwardly or some such thing.

Second, I greatly sympathize with those people who are in the earlier stages of the disease. As I have told Judy, for me “getting this way was worse than being this way.” Much, much worse. The mental stress of watching the progressive deterioration of your basic physical abilities — loss of dexterity falling, having trouble swallowing, losing your voice — is enormous and exceptionally depressing. My situation now is relatively secure. Much, much more secure.

Finally, the decision of whether or not to go on life support is an intensely personal one. I made the right decision for me, but that is not to suggest that my choice would be the appropriate one for everyone confronted with similar dilemma.

Compare my situation, for example, to that of Thomas Hyde. He was the man with ALS who Dr. Kevorkian helped to end his life in August 1993. While I was in my mid-forties when I was diagnosed with the disease, Mr. Hyde was in his twenties. And our occupations were also quite dissimilar: mine was indoor-focused, college teaching, and his was in the outdoors, landscaping and construction. These major differences mean that the impact of similar physical changes on each of us would vary due to our different lifestyles. I would like to think that if I had been in his position, I still would have chosen life — but I wasn’t, so I can’t truly know what my ultimate decision would have been.

All that said, I would still like to talk to those people who are seeking end their lives — and would have liked to talk to those who did. What would I say? I would simply tell them that “there is life on a ventilator.” They would probably respond by asking me what good could that kind of life be. Admittedly, it is often difficult. Compared to being “normal,” the list of frustrations and “wants” is endless. For me, however, it is good just to be alive The positives outweigh the negatives (although, on my periodic “bad” days it seems not by a whole lot). I have to assess the quality of my life in slightly different terms but it is still full of opportunities, challenges, rewards and joys. There are many things I am curious about and interested in. I enjoy the rich­ness, diversity and complexity of life. I want to see what my children do with their lives. I have retained my thirty-year fascination with Russia and with Asia, particularly Southeast Asia. There are things I want to write about and books I want to read. And, among other interests, I also want to continue to “manage” my fantasy baseball team. I suppose the bottom line is what you do after going on the ventilator. I am fortunate in that many things I love I can still do.

This doesn’t mean I don’t sometimes — like daily — bemoan my situa­tion. I do (but, usually, only to myself). There are so many things I used to enjoy that I can no longer do. There are so many things I looked forward to doing that are now impossible.

In the beginning, I agonized over the “why me” question. I soon realized, however, how emotionally draining and generally unproductive that line of inquiry could prove to be. Moreover, I eventually discovered what seems to me to be the logical answer to the question: “Why not me?” I also admire the way Arthur Ashe, the late tennis great and humanitarian, dealt with the question in his struggle with AIDS. In his autobiography, Days of Q-race, he explains that since he never asked the question when he was enjoying per­sonal and professional success, he had no right to raise it now. This is a phi­losophy with which I fully concur.

I have also lamented the fact, and others have too, that “it just isn’t fair.” Of course it isn’t. Unfortunately, as we all know, life is not “fair.” I think about “fairness” when I read about children starving in Rwanda or being killed in random drive-by shootings in Los Angeles and other American cities. Compared to them and countless other examples, what reason could I possibly have to complain about “fairness”? I have a wonderful wife, three ter­rific children, a super daughter-in-law, Kris, a precious granddaughter, Marley, a career I found both challenging and enormously rewarding, plus I traveled widely and coached youth soccer for many years. All these things I loved and embraced enthusiastically. No regrets. And yet, I suppose it’s human nature always to want more. I know I do. I feel, arrogantly I admit, short-changed, robbed of a third of my life. There are so many things I want­ed to do.

Enough bemoaning what was or what might have been.

The underlying point of all this is that I had a choice. I made a conscious decision to go on the ventilator and on with my life. The decision wasn’t made by a doctor or anyone else but me. I am very happy with the decision made and I can live with the negatives, frustrations and downs because I chose. My parents taught me that I had to live with the consequences of decisions and, for me, the benefits of living far outweigh the costs just had expected. Having a choice is the key and makes all the difference in world.

Shouldn’t a person with a disease such as ALS facing horrendous prospects with an all too predictable outcome have the legal right to choose whether to go on with life or end it with dignity? I imagine that most everyone who faces the debilitating and terminal nature of a disease like ALS would prefer to have such a choice. ALS victim Dennis Kaye, in his book Laugh, I Thought I’d Die, writes that he does not want to go on a ventilator when it becomes necessary. Why should he have to? In This Far and More, another book about ALS, Emily Bauer (a pseudonym) poignantly wrote in her diary: “I don’t know how anyone with access to a normal life can expect me to accept such a limited one. That others have accepted a drastically limited life does not mean that is the right course of action for me. Who has the right to tell Emily that she doesn’t have a choice?

Life is about making decisions and choices. For the terminally ill, those choices should include when to die. This doesn’t mean choice by doctors or family members or ministers or counselors or any person except the patient himself. Others can and should be consulted, but the decision must be up to— in the words of the U.S. Ninth Circuit Court of Appeals — the “mentally competent adult” patient.

But the right to choose death necessarily must include the right to choose life. I was faced with that choice in February 1991. In less than three years, I had gone from a robust, physically active person to being completely disabled. I could barely squeeze out a sound, had lost more than a third of my body weight because I had trouble swallowing even mushy foods, was almost totally paralyzed and my breathing had become very labored. What to do?

I am fortunate in that I had a real choice. Two doctors separately offered me the option of ending my life painlessly. I didn’t choose that option, I deeply appreciate their compassion. I made a conscious decision to go on a ventilator and on with my life. I talked it over with several people close to me, especially my wife, who would take on the additional role of caregiver. But I alone made the decision. I chose life.

For me, having a choice is the key. No one forced me to live. No one forced me to die. I chose. Because of that, I can cope with the negatives and “downs” as well as relish the positives and “ups” that my life presents. Choice makes all the difference; it’s as simple and as complicated as that.

I look on my life as a doubleheader. An unscheduled doubleheader. I am thinking of the famous statement by Ernie Banks, the great Hall of Fame shortstop for the Chicago Cubs. Ernie had outstanding skills and it was a pleasure to watch him play. In retrospect, however, what impresses me even more than his ability is his attitude. He had an unparalleled enthusiasm and love for the game. One afternoon at Wrigley Field, he said, “It’s a beautiful day for baseball. Let’s play two.” Think of it. An unscheduled doubleheader!

I think “playing two” is a perfect analogy for my situation. I am playing the second game of an unscheduled doubleheader. I almost died in early 1991. That’s when I made one of the best decisions of my life. I chose to be hooked to a ventilator. As I told my Pastor at the time, I felt re-born. Despite my limitations, it was good to be alive. It still is. I am enjoying playing my second game.

Harper Lee, in To Kill a Mockingbird, defines courage as knowing “you’re licked before you begin but you begin anyway and you see it through no matter what.” Well, ALS has licked me, just as it licks everyone it touch­es. But I am only physically beaten. My spirit, though battered a bit and somewhat bruised, survives and remains strong. I refuse to let ALS win that battle, too.

There is still room for hope. Many people believe that where hope exists, life can flourish. I agree but I think the converse is also true: Where there is life, there is always hope. In the meantime, I am an admirer of Don Quixote; I can identify with his willingness, as sung in “Man of La Mancha,” to “fight the unbeatable foe.”

Excerpt from Who’s Right? Whose Right? Seeking Answers and Dignity in the Debate Over the Right to Die edited by Robert C. Horn III with Gretchen Keeler (DC Press).

©2001 by Robert C. Horn, III. All Right Reserved. Reprinted by permission of DC Press. For more information about this book go to www.insyncpress.com.

Robert Horn is a 14-year survivor of ALS. This former professor at California State University - Northridge, who hasn't been able to speak, eat, or move his body for nearly a decade, created the concept for this book and personally selected the final participants. A former Rand scholar and authority on conflict resolution, Robert has made it his life's work to share the strength of his will to live and his desire to educate others. Robert, father of three, lives in Winnetka, CA with his wife, Judy.

Co-editor, Gretchen Keeler resides in Northridge, outside of Los Angeles with her husband Bruce. She is an accomplished harpist and long time friend and companion of the Horns.

Healing | Death  |  People Tell Their Stories  |