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I PAGE 10—The Georgia Bulletin, April 28,1983 How The Spirit Moves Among The Sick Building Networks Of Support For Sick BY KATHARINE BIRD Sister Raphael McGrath C.S.C. is coordinator of follow-up care for chronically ill patients and their families at the hospice affiliated with St. Agnes Medical Center in Fresno, Calif. A nurse and educator, she went into the field of pastoral ministry to the sick in 1972. Her training included a stint at St. Christopher s Hospice in London. The Holy Cross sister discussed her work during a recent interview. . . Q. Sister, why did you become a pastoral minister tor th© sick 9 A. I saw a gap in care for the chronically ill. In treating IN DECATUR, GA., two 13-year-old candy stripers escort an elderly man on a walk around the grounds of a retirement home. Illness sometimes impels a person to concentrate on living in a more creative or meaningful way. Paul patients with acute illnesses, the emphasis in hospitals is on providing fast medical care during a crisis. But the chronically ill need time and slowed down care with families present. More than half the time, the patients we deal with are chronically ill.: Their disease is something that can t be turned around by medical skill. The illness, whether it is arthritis or lung disease or something else, is often a result of the normal process of aging. Q. What is the aim of your ministry? A To give patients a certain quality of life — to help them to live one dav at a time. Persons with chronic Toumier, the Swiss physician, said illness is an occasion for taking stock of oneself in ways that few of us undertake when we are in full health. (NC Photo by Roger W. Neal) illness can get caught up in fear and negative thoughts and end up feeling diminished as human beings . . . These patients need to learn to cope. The hope is to bring them to acceptance and peace right where they are. Q. Let’s say you have a patient, a 65-year-old male who has just been told he has congestive heart failure, a condition which will be chronic, but not immediately life-threatening. How would you proceed? A. It’s a pastoral care chess game — we plan day by day and set priorities. The top priority is preventing a break-up, where a family is so isolated from the sick person that family members can’t even visit. I would work to bring the network of this patient’s family and friends together, to build a Christian community of love and support around the sick person. The patient is likely to feel extremely anxious, uncertain about his future and inclined to give up. He needs to be given new hope each day. To encourage him to talk, I might ask the patient, “How is it with you today?” Leading questions often can set a patient free to discuss his feelings. I would try to find out the patient’s church affiliation, to reconstruct some moments of strength he has found in religion. Q. Do you deal much with the family of sick persons? A. I spend a lot of time with families to see where they are coming from, what their concerns are. It helps to find out the family’s history: how others have died; whether the circumstances were frightening; whether there is a question of unresolved grief. Talking about these matters can help families to get over their fear of being near a sick person. If family members aren’t afraid, it helps the patient too. Q. How do pastoral ministers help young people cope with chronic disease? A. We have a 14-year-old boy at the hospice who has struggled for five years with the knowledge that he will never grow to manhood because of chronic kidney disease. His older brother died of the same disease. Four volunteers give support to the boy and some respite to family members. One is a young mother who understands how kids click. She is the boy’s friend and takes him to movies and spends lots of time in buddy talk with him. Initially they met weekly but now that he is more independent they meet every other week. She also has become the mother’s friend. I would say that family has triumphed despite the disease. The family has strong Christian church connections and over the past couple of years the child and the family have grown a lot. Today, in spite of his illness, the boy is a hospice volunteer, working in the staff office. That gives him a place in the sun. BY DOLORES LECKEY Stephen Hawking is one of the world’s foremost physicists. He works from a wheelchair, reading with the help of an electric page turner. Some say that the investigations of this British cosmologist at Cambridge University into the structures of the universe make him the greatest in his field since Einstein. Hawking achieved this stature while struggling to live with a motor neuron disease which affects his entire physical mechanism, including his speech. Hawking’s articles and books are dictated to his assistant, one of a handful of people who can understand his speech pattern. Yet, his published works are known for their brilliant and lucid prose, words chosen as carefully as poetry. When asked how his illness affected his scientific career, Hawking replies that it has enhanced his work. It gave him “freedom simply to think,” he explains. And for a cosmologist, thinking is everything. Those who know Hawking attribute his attitude toward his illness to the influence of his wife whom he met shortly after its onset. He says she gave him the will to live and — much more — the willingness to live a full life, including parenthood. Obviously love empowered Hawking to think beyond his withered limbs to the glories of the galaxies. The meaning of his own unique life was not lost. Flannery O’Connor, best known as a writer of fiction, is another person whose natural gifts continued to develop after she was afflicted by a serious illness, lupus erythmetosis. This is an exhausting disease which depletes the energies of its victims. Lupus forced Miss O’Connor to pare her life to essentials and to channel whatever strength she had into her writing. Fixed by necessity to her Georgia farm home, she was cared for by her mother. Miss O’Connor then turned her extraordinary powers of observation to the life that surrounded her, contemplating the country life of her neighbors and the power of religious symbols. The result? A legacy of stories that tell of courage and humor, faith and hardship, qualities that characterized Miss O’Connor’s own life, illness and eventual death. Hawking and Miss O’Connor are two examples of how illness sometimes impels a person to concentrate on living in a more creative way. Undoubtedly their extraordinary natural talents played a role in this. Still, I think their example can benefit all of us. Paul Toumier, the Swiss Physician, wrote about this. For years Toumier helped patients - as well as the many others who read his books and have heard him lecture — tap the creative resources within themselves. In his writing, Tournier speaks of illness in terms that may at first seem surprising. Illness, says Tournier, is an occasion for taking stock of oneself in ways that few of us i undertake when we are in full health. An illness can be an occasion for becoming more aware of problems that need solutions and a time to reorder one’s values. Tournier’s writing also offers his thinking on the underlying causes of illness. He writes, for example, that many illnesses develop over the years as the result of a life that is led in ways that are contrary to the laws of good health. As a result, Tournier indicates that patients may need help in seeing how their behavior is related to their illness. Toumier suggests that regular daily meditation and attentive listening to the inner voice can counter the stress and fatigue that are at the root of so much illness. Yet Tournier offers a realistic view of the reluctance people often have to take time for meditation. In a 1969 book called “Fatigue in Modern Society,” he wrote: “A problem which afflicts us all ... is to know that the part of our day accorded to the active life and that reserved for the meditative life are totally disproportionate.” Tournier made prayer and meditation central in his own life and helped countless patients to do likewise. When I think of his advice, I also think of the singlemindedness of people like Hawking and Ms. O’Connor. I think too of St. Therese of Lisieux. She clung to the belief that “all is grace,” even during the years of her fatal illness and in the face of her death at the age of 24. This 19th century French saint showed how possible it is to continue to lead a life of great purpose and to sense God’s care and power in the midst of personal debility.