Living with Chronic Illness: Why Should I Go On?
by Stephen Schmidt
Stephen Schimidt is professor of religious studies at Mundelein College in Chicago. This article is adopted from his Living with Chronic Illness, published this month by Augsburg-Fortress. This article appeared in The Christian Century, May 3, 1989, pp. 475-479. Copyright by The Christian Century Foundation; used by permission. Current articles and subscription information can be found at www.christiancentury.org. This article prepared for Religion Online by Ted & Winnie Brock.
Everyone who lives with a long-term illness thinks about suicide at some time during that illness. My hunch is that these emotions usually come early in the disease, during the first struggles with the reality of chronic illness. The second most common occurrence of those sentiments comes, I think, at times of crisis in the disease, at times of reversals.
Though I have rarely seriously considered suicide in the 12 years I have struggled with Crohn’s syndrome, a digestive disorder, I have flirted with the feelings. During one particularly bad period of three months, when my symptoms were acute and seemingly getting worse, I sank into what can only be called a chronic depression. What joy is there in feeling bad daily? Each meal was surrounded with the possibility of painful aftereffects: cramps, diarrhea, chills and pain. Why then eat? And I ate less and less, losing weight continually until I reached a new level of thinness that frightened and shocked me as I saw my body reflected in the mirror. I had no energy, no zest. I often took naps and retreated into solitude. I rejected company, thus adding to my depression.
In that period I remember thinking more than I wanted to about death, thinking that it might not be the worst kind of experience if life continued as it had for these months. I never planned suicide, I just entertained the idea more often than at any time in my life before. What helped me recover? How did the spiral end? How can we move from such feelings to those more positive and hopeful? How can we go on when things are very bad?
First of all, the truth finally became apparent to me that I wanted to live more than to die. Life is filled with lots of certainties, one has friends, a lover, children, family, a task and dreams for a better tomorrow. The desire for life is just plain human and absolutely universal. On the other hand, death is always filled with mystery; we die alone, we leave all those earthly pleasures. We will never walk in the sun again, never taste a chocolate sundae, never smell spring, never talk to a loved one, never be touched, never make love (that reality always seemed laden with extra emotion for me!). I think one goes on because life is stronger than death: it is the most common universal value of being human.
Not so long ago I visited a dear friend of mine, a former colleague, a theologian, who was dying of cancer. I wanted to see Ken before he died, so I journeyed to Connecticut to visit with him only weeks before he died. I wanted to talk about death and life, about heaven and hope, about faith and doubt, about my love for him and my gratitude for wonderful memories. We spent the entire day remembering, telling stories, laughing and crying, and holding.
I shall never forget his words about dying and living when I pressed him about the Christian hope of heaven. He responded: "Steve, I am far more interested in the geography of earth than I am of heaven. "Those words said only weeks before he died, were words spoken after another surgical intervention to extend his life. He told me he wanted, as much time as possible, to see the flowers, to smell life, to be with his wife and family, to listen to music, and read more books. (His book orders continued to reach his home after he had died.) He knew about the strong living urge which is, I think, the birthmark of humankind. And he faced death with absolute certitude about the life to come. He had no doubts about resurrection, about the hereafter, about the future hope of a new life and a new being. But for that day, and each day until he died, life was a stronger desire than death. I think that is the first reason we go on when we experience bad times: because we want to live. Period.
Second, we live when things are not worth living for because of a certain innate courage, a will to live. Something inside us seems to call us to courage, to a persistent will to live in impossible situations. I have noted great courage in the midst of suffering in friends whose days are filled with pain and heartbreak. But their lives are filled with even more courage. They bear the primal sign of God in their life, a God who created and said of that creation, "It is good." Life also is good enough to be courageous, good enough to call us to valiant decision and heroic lives. What it means to be human is to have courage, and that quality of being, I think, is nurtured in illness, sometimes to a degree that is almost awesome. Courage faces the misery, faces death, faces despair, and still seeks to live. I think that is why people turn from suicide to life; they have courage, courage to hope, even if they never experience the reality of that hope. Such "nonsense" sounds like primitive gospel, to hope about a cross, a death, about suffering, and to find in those dying struggles courage to live yet another day.
There is yet another reason for going on when things become impossible. It has to do with others. All of us somewhere in adulthood learn the wonderful lesson of community. We are formed by others, even before we know our name. We exist because of an intimate community of two, and we grow in a family, a community of a small group. All our lives our identity is nurtured by others. We do not live alone, and somewhere in growing up, in becoming adult, we learn that others not only make life possible for us, they rely on us to make life possible for them. We exist because of our families and friends. And they exist because of us, even when we are sick. So somewhere in despair, when life appears not worth living, somewhere we remember others: spouse, children, those whom we love.
Choosing to die, or dying itself, is never a solitary decision or event. When one dies, others die too—not completely, but a little. So the person deciding to end a life ends a whole series of relationships, relationships that depend on that person. In the process of hoping and deciding to live, the person who is ill comes to the awesome insight that his or her decision is not private. Each death, each suicide, is a communal decision: that is, it effects all those who rely on our part of the human equation. We live because of them, and they live because of us.
I suspect that this is a basic, elemental Christian notion, that we exist for each other. "Love one another." Someone has said that the smallest Christian community is a community of at least two, one to love and one to be loved. So the Christian tug of reliance, the responsibility of connectedness, makes the decision about giving up, or giving in, a matter of importance for more than the one dying. We turn away from dying because we turn to those who have given life to us. We return the life; we live for others as they have lived for us, even if it means only a few more days or weeks or months or years.
Finally, there is one more reason why Christian sufferers turn from suicide, and that has to do with the Christian notion about what it means to claim something about the lordship of Jesus. A wonderful colleague of mine, a Hebrew Scripture scholar, once told me that he thought the most succinct statement of biblical Christianity was this: "In all things God works for the good of those who love him" (Rom. 8:28). That kind of faith has nothing to do with Santa Claus religion, but Christians are those called to trust the providential care of a compassionate God. It is the same notion that kept Luther focused on a loving God, on God as friend and not enemy. It is the same Christian conviction that we live under grace, gifted, and abundantly surrounded by God’s care and concern.
Not that the Christian always experiences this feeling, not that at all; it is often almost the very opposite. The Christian lives this conviction about God’s care in the midst of impossible situations. One lives dependently, held in the everlasting arms, arms that do not crush or smash or smother, but that hold and comfort. Arms of "Abba," our "Daddy" (Rom. 8:15). Life and death, Christians are convinced, belong to the creator and preserver of all. To believe that God created is to believe that God really cares about "the hairs on our heads," the "lilies of the field," the "birds of the air." And if God so cares about those mundane aspects of the cosmos, then God cares for me. That is the ringing hope of Christian faith, the "for me" aspect of the conviction. To believe that in all things God works for the good of those who love him is to live life in trust and hope, to give up on the perspective of personal control, and to give in to faithful dependency on God’s intimate care.
That conviction also conditions how we judge the case for or against suicide. When I was a child, the church stood firmly opposed to suicide. I remember the taboo vividly. Whenever someone would commit suicide, that person did not receive Christian burial. Suicide victims were judged to be outside the sphere of God’s care. In fact, such understanding of God’s care became a rule for not caring. This value was held by most Christian communities. The church’s ministry for the dead, "anointing" and burial, were withheld from those who chose to take their own lives. Such a position made the providential care of God a qualified care, only for those who met some specific criterion of faith. Those who vacillated or chose to end their lives were outside salvation; they died in their sin, like Judas of old.
My favorite story regarding suicide and Christian conviction occurred a few months ago in our chronic illness group at my church. One member, Sophie, was relating her feelings of the past month. She had once again experienced a recurrence of the dreaded disease. Remission had ended and the cancer was active again in her body. (Sophie suffers from cancer, diabetes, heart disease, and is handicapped by the removal of one of her legs by amputation.) This particular month Sophie had experienced reversals which could only be termed "bad times." She had been hospitalized a couple of times, received chemotherapy again, and those treatments were followed with the usual discomfort. If any one in our group deserved sympathy that evening, Sophie did. Sophie told her story and we listened quietly and anxiously. As she neared the end—and Sophie is not given to exaggeration—she spoke of recurrent thoughts of suicide. She was ready to give up and give in. These symptoms were uncharacteristic for Sophie. She was usually euphoric, abounding in energy, always challenging others, and generally happy. We all admired her courage and style. Suddenly the strong one among us was near defeat.
Various responses emerged. None gave much solace, and Sophie seemed unconsoled. We moved on to the person sitting next to Sophie, Louise, who has the long-term disease of atypical trigerminal neuralgia. Louise can’t talk much without pain. She leaned slowly to Sophie and said, "Sophie, don’t you dare commit suicide; when God wants you to come home, God will come and get you. Until then, you keep living and believe that God will take care of you. " We were all caught a little off guard. Louise’s words were strong and authoritative. Sophie smiled and we felt the bond of love between the two women. We all relaxed; the only word that needed to be said had been said, and said by the one among us who had authority to say it.
What Louise expressed is at the heart of the Christian faith, that "in all things God works for the good"; just that simple, and just that profound. Louise understood something of the power and love of God, and Louise became the sacramental presence of God that evening among us. She spoke of God’s love, of God’s time, of God’s choice and God’s prerogative. She expressed the Christian hope that we are surrounded by God’s care, and that fact holds us in faith when that conviction is most threatened.
We can’t let go of life, because we are held and needed until another time when letting go is God’s will for us. Dying is God’s call, not ours. And Louise’s saying the words had more power than any of our saying so, because she lived in that experience daily. She understood the weakness of the heart and the strength of faith. And she loved as love is spoken about in Scripture. She did what was needed that evening for Sophie, for us and for God. God’s presence was never so evident among us as when that frail woman leaned toward her sister, touched her arm, and anointed her with the "oil of gladness," with words which had power and compassion. Another time Sophie could let go—in God’s time, but not then, not this time.
The events of that evening remind me of an experience in the last years of my father’s life, a few months before he died, just after his century birthday. He was living at the time with my brother in Tucson. One evening Herb heard Dad speaking. As Herb neared the bedroom to see if anything was wrong, he saw that Dad was obviously in that twilight zone one experiences before the final slumber of death. He was agitated and his voice was powerful and animated: "Mother, my mother Mary, I see your candle, do you see mine? Yes, I see your light, do you see mine? No, I can’t come to your candle, you come to mine." Then a brief pause and the words poured out. "Dad, my father Conrad, I see your candle, do you see mine?" No, I can’t come to your candle, can you come to mine?" Again a brief pause and the final words. "Bertha [my mother, who had died a few years before], I see you, can you see me? No, I can’t come to you, can you come to me?" Herb entered the room and roused my father slightly until he seemed to waken. Dad almost shouted: "Herb, I am Henry T. Schmidt, am I not? Am I OK? Is that not who I am?" Herb assured Dad of his identity, and slowly, gently Dad fell asleep into a deep and wonderful rest.
My father almost wanted to die, but not just then. His words were about the economy of God’s time, and that time was not yet God’s time. So my father lived on past that evening, many months; his time had not yet come.
Why go on when things are very bad? Because we need to, simply that. There is something within the character of a person that calls him or her to courage, to relationship, and to others. Those convictions hold true even in difficult times. And another time, in God’s time, one will not go on. One will be called home, called by the compassion and love of others who have gone before and bid us come. One weighs the duty. For now our responsibility to our human community calls us to courage and faith; another time another community, the communion of saints, will call us, and bid us into mystery, eternity, heaven or, as Christians sometimes call it, home, that place where indeed the heart is.
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