Stauros' Notebook
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Autumn, 2002
In Need of Care Tom Droege Parts of this article are excerpted from Dr. Droege's book, Receiving Care with Grace and Gratitude. My sister and her husband flee the cold and snow of Michigan every February for a camping trip to Florida and the Keys. They regularly stop and see us in Atlanta on their way south. Just weeks before their visit in January 1998 I had officially retired from The Carter Center, where I was Associate Director of the Interfaith Health Program. We were looking forward to a pleasant, relaxed visit. This pleasant prospect vanished when irregular blood counts from a routine annual physical yielded a devastating diagnosis of multiple myeloma, a bone marrow cancer with no known cure. All treatment options are palliative, and useful only when the threat of the disease is greater than the threat of the treatment. Trained as an academic, I plunged into the research literature, the most depressing reading I have ever done. Major complications include bone deterioration leading to fractures and spinal compression, kidney failure, and a compromised immune system that can be overwhelmed by bacterial infection in a single day. Median survival time - 30 months. I was a basket case by the time our visitors arrived in late January. Their visit could not have come at a better time. Though Esther and I have good friends and a wonderful congregation of caring people who would provide sustained support in the months and years ahead, it was literally a Godsend for us to have my sister and her husband here that weekend. They met my need for unhurried and extended conversation about this horrible turn of events and what it might mean for our future. I was frankly envious of their trip to the Keys. Without making a big deal out of it, I told them to let us know if they saw a rental sign or heard about a place that was available for a week. There was not much hope of that; it was the peak season for northerners to seek the sand and sun of the south, and they were already calling to reserve a camping site for the following year. We were stunned a week later when they found a place. It was a lovely new home right on the waterfront that came with exquisite furnishings. It was more expensive than we could afford, but my sister had already arranged with our other three siblings to pay the major portion of the week's cost. That week marked a major transition in my learning to cope with the disease I would live with for the rest of my life. The devastation I felt before we went to the Keys was complete. I saw no light at the end of the tunnel, only darkness pressing in on every side with the prospect of a diminished and foreshortened life. It felt like a mist had settled over me and all my surroundings, and I had to grope to find my way. During the week in the Keys the mist gradually began to lift and, wonder of wonders, all the furniture was rearranged. It was nothing less than a transformation, both of me and of the world in which I was living. Nothing was the same anymore, and I had a heightened sensitivity to everything around me. I became much more aware, much more mindful, much more appreciative of every day, every hour, and every moment. I was much more likely to celebrate life than ever before. Though the transformation was not complete by the end of this week, I was aware that a major shift in self-consciousness had occurred. The wonderful gift of this week by my brothers and sisters also marked another major transition in my life, a shift in identity from caregiver to care receiver. It's not a total shift, of course. I continue to care for others, but that's no longer my core identity. I've been a caregiver all of my adult life - as a husband, a father, a pastor, a teacher, a counselor, and a chaplain. The foundations of that identity were shaken by my retirement, but especially by my illness. Being on the receiving end of care is not a new experience for me. For the first twenty years of my life I was as dependent on the care of others as any other child. Esther and I have been interdependent throughout our married life. At the heart of my theology is the gospel proclamation that all of life is a gift from God and dependent on God's gracious care. Yet I took all that for granted without paying much attention to it. My identity as a caregiver, on the other hand, had been carefully cultivated. Years of training and practice as a pastor, a chaplain, and a therapist have shaped that identity, along with the experience of parenting three daughters. It's no wonder that the shift from caregiver to care receiver has been a difficult and sometimes jarring adjustment. The gift of that delightful week in the Keys made a deep impression on me. I decided to pay more attention to my needs and relearn the lost practice (and it takes practice!) of receiving care. It hasn't been easy, and I continue to encounter enormous resistance from a deeply embedded sense of self-sufficiency. When someone asks me how I am (not "How's it goin'?" but "How are you, really?"), my first instinct is to say, "I'm fine. I'm managing just fine." It's only later that I'm fully aware if it was an honest answer. Sometimes it is. Sometimes it isn't. The point is that I have to be self-conscious about asking for help or responding to offers of care, even while giving care comes automatically when I sense needs in others. The first big step in consciously practicing the art of receiving care came with the decision to share the story of my illness with anyone who was interested. Though I didn't want to be defined by the illness, I didn't want to be alone with it either. This was one of the best decisions I made. I sent an e-mail report to family and friends, and I continued that practice after each three-month check-up. I encourage people to ask about my health and how I'm coping. As never before, I can say with John Donne that "no man is an island," that all of us need a community of support and love to sustain us in time of need. The refreshing experience of receiving care, combined with the awareness of how much resistance I have to asking for it, prompted me to reflect more deeply on the dynamics of receiving care. I spoke regularly about it, and asked others about their experience. The more I discussed it, the more I realized that I wasn't alone. Caregivers generally ignore care receiving, both the care they receive and the care received by those they tend. Casual conversations developed into more serious inquiries about the experience of others and how the topic of care receiving was treated in the research literature. I did a broad search of titles in the theological library at Emory University. There were 1310 references under the search term "care." Hundreds were on giving care: pastoral care, lay care-giving, caring for particular populations (AIDS patients, alcoholics, chronic illness, the dying). But only one title gave any hint of receiving care. What makes this disproportionate emphasis even more striking is that every theologian with whom I am familiar, including those in pastoral care, would agree that the primary orientation of every person in relation to God is that of receiver. Receiving is considered to be a good thing in relation to God, but is virtually ignored in relation to others. Care receiving is associated with diminished capacity and the loss of autonomy, control, power, dignity, pride, and self-respect. People feel obligated to pay for care they receive, both literally in exchange relationships like home nursing and morally in communal relationships. Long-term care receivers often feel diminished by and inferior to those who provide care, and dependency on the care of others breeds resentment and envy. Diminished capacities are linked to diminished self-esteem. No wonder we're so drawn to giving care and so resistant to receiving it. The prospect of lying flat on our backs and being totally dependent on the care of others is for many the worst possible consequence of a debilitating illness. When I taught courses on death and dying to university students, I told them they needed to be in touch with their own dying before they could be fully present in caring for the dying. The same is true for receiving care. If we focus almost exclusively on giving care and ignore our own need for receiving care, it will be reflected in the kind of care we give. We may have sympathy for those we care for, but very little empathy. As I looked through my files recently, I came across a sermon I preached on the parable of The Good Samaritan (Luke 10:29-37). The focus is not on the Samaritan as caregiver but on the man who was beaten and in need of care. This sermon was written 15 years before my cancer diagnosis. Only now can I can appreciate the full existential meaning of its content for me. The parable of The Good Samaritan is about caring for others. But we miss something if we focus exclusively on the contrast between the positive example of caring by the Samaritan and the negative examples of Priest and Levite. You don't have to be a math major to realize that for every caregiver there has to be someone who is a care receiver. In this case, it's the man who is beaten and left half-dead. This morning I would like to draw your attention to that man and what it means to be cared for. The hero of the story is obviously the Samaritan who knows how to be a neighbor, to be one who cares. If the parable were told today, the Samaritan would be a Palestinian, not the kind of person you would expect to befriend a Jew. The Samaritan sets the standard by which Jesus judges all of humanity. Dietrich Bonhoeffer put it well when he said that Jesus' question at the last judgment will not be, "What do you do?" Even less will it be, "Who do you know?" or "Who knows you?" The question will rather be, "Where is your brother? Where is your sister? Where are those who have a claim on your care?" The person most often neglected in the parable is the man lying by the road beaten, helpless, and very, very needy. Think about what it means to be desperately in need of someone's care. It's not surprising that this pathetic figure gets ignored. There is little that would prompt us to identify with him and his need. For most people it is incredibly difficult to be dependent on the care of others. All of us know we are at least interdependent, and that we are never more than a heartbeat away from a serious illness or handicap. But what about those times when we're like the man on the road, when we hurt, when we are in need of help? Fortunately most of us rarely if ever find ourselves as totally dependent and as obviously in need as the man in the parable, but that's part of the problem. Most of our wounds are well hidden. We've been taught to cover them up with a smiling face or a stiff upper lip. We are encouraged to identify with the strong, the successful, the winners. We're taught that tears are a sign of weakness - to be shed, if at all, in private. We've been taught to solve our own problems and not to burden others with them, especially people who are busy and have more important things to do. But nobody is a winner all the time. Everybody falls down. Everybody gets hurt. Everybody needs to be cared for. Everybody is dependent. It's just that we get so little help in being that way gracefully, humanly, and with dignity. We value our independence, and few adults would want to exchange it for the childhood years of dependence, but there is a little child in all of us that surfaces at times with a yearning for arms that will lift up and enfold, for a voice that whispers, "It's all right." How hard it is to reach out and cry for help! How degrading it seems to admit that we can't solve our problems by ourselves. How difficult it is to become a beggar when self-sufficiency has been our ideal. We are born to win, or so it seems, and any losses sustained along the way we are expected to nurse silently and alone. There is a very destructive and distorted theology informing that mentality. We say quite glibly that we live by grace and not by works. But the truth is that most of us live by a labor theory of values that says you are what you produce, that your human worth is judged by your strength and your ability to care for yourself and others. That attitude is behind the worthlessness that people feel when they are weak, when they are dependent, when they lose. What a commentary on us and our values when our sense of dignity and even our sense of humanity is dependent on our being successful and strong and able to care for others. No wonder it is hard for us to ask for and receive help from others. In so doing we seem to affirm their humanity and negate our own. Only the perspective of the gospel can reverse that mindset and enable us to receive grace with grace. The truth is that we are all beggars before God, all totally dependent on the gifts that he so freely bestows, gifts of life and love and mercy. That's as true when we are healthy as when we're sick, when we're strong as when we're weak, when we're caring for others as when we're being cared for. All we have and all we are, our very humanity, flows from God and is sustained by God. Our worth is dependent not on what we do but on who we are as children of God. Ours is an alien dignity that has its source in God and not in ourselves, and that's what makes a person living with permanent disabilities worth as much as the most gifted genius on this planet. That's a humbling thought when we get too proud of our strength and self-sufficiency, but it's a comforting thought when we're not producing what we think we ought, when we are reaching out for and hanging on to the help of others. In the parable of the Good Samaritan Jesus is identified with the Samaritan, the one who does the caring. In the parable of the last judgment, recorded in Matthew 25, Jesus is identified with the one who is cared for, the one in prison, the one who is hungry, homeless, or in need. We need to remind ourselves that Christ is present on both sides, that he is in the caring and in being cared for. Again, Bonhoeffer put it powerfully when he said: "Men go to God when he is sore bestead, Find him poor and scorned, without shelter or bread, whelmed under weight of the wicked, the weak, the dead: Christians stand by God in his hour of grieving." It is obvious that Christ is in the caring, working in and through us when we care for others. It's not always obvious to us that Christ is present on the other side, in the being cared for. It's no disgrace to be in need or to receive the help that others offer. Our Lord knew what it was like to be weak and alone, to suffer, and be in need of help from others. He cries out with us in our weakness and aloneness, and he reaches out to lift us up. There is no contradiction, because his presence encompasses all of life and penetrates deeply into every human event. Pray that God give us the grace to be loved as well as to love, to receive as well as give, and in so doing to affirm the gifts of God, who enables us to give only because we have first received.
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