Death's other kingdom

...Hopes are replaced by fears...

...In Stay of Execution, A Private Battle, and Death Be Not Proud, the experience of illness is so thoroughly examined and accepted that the writers attain a transcendent vision of the meaning of their lives, even of life itself...

...This sense of a person fully entering, apprehending, and accepting his life not against but in illness and death is more powerfully conveyed in Cornelius and Kathryn Ryan's A Private Battle...

...And underlying it is Alsop's joy in the full life he's led, especially in his love of his wife and family, a love fully realized in his illness and in this book, which he completed one year before his death at sixty...

...Again it is the apparent simplicity of the response which makes the legend...

...the emphasis is on the action and image of the life and death, not the examination of them...

...they will cover them up, cover for one another...

...Illness reveals to the people in these books not only what being alive in the world feels like but also what it means to them...

...In the face of extreme suffering, both physical and psychological, what the patient cannot accept is shoddy treatment by doctors, nurses, and hospital staff...

...But I will still continue to fight it...

...Moreover, they do not like to admit their errors...

...rather it is what many healthy, prosperous, and busy people lose or forget and then mourn without knowing it...

...This anger is not, however, directed at the disease...

...This is the truly personal part of the narrative, and this is what places these books in the persistently strong tradition of spiritual, though not necessarily religious, autobiography...

...The doctor, we are all told from childhood, knows best...

...This confusion is not examined in either the film or the novel...

...instead, we must try to understand...

...People are not radically transformed by serious illness...

...one feels, finally, contracted into a body whose smallest, hitherto simplest function is monstrously threatening...

...each of the members of the family did that, and did it for one another as well as for themselves...

...tons' Getting Well Again (1978) and, most recently, Norman Cousins's Anatomy of an Illness (1979), hold out hopes of self-cure...

...DESPITE THE extraordinary popularity of these narratives, they are generally disregarded...

...The ill person soon acknowledges that no talents, possessions, work, or love can protect him from being ill or dying, and as much as possible the patient accepts his being sick and suffering while others do not...

...STANDING BETWEEN the extremes of uncritical denial and acceptance are those books whose dominant response to the experience of illness is anger: First, You Cry and Heart sounds...

...Moreover, many of these books have been made into films for television...

...The courage, honesty, and respect for her own feelings which she expresses in this book are finally an affirmation of her own way of being and the best indication that she will be able to go on and live fully the life she has yet to live...

...All of these books show ill people asking themselves "Why me...

...That is the source of hope and life, of change and growth, people find in these books...

...What has been important is that God has seen me through the night and given me another day to work and to be with my family...

...If the care is bad, if the medical people are arrogant, cold, patronizing, and dismissive, insult is literally added to injury and the patient rightfully becomes angry, not at the disease, but at the treatment...

...The simplest responses are uncritical denial or acceptance of mortal illness, and they occur in the most dramatically transformed autobiographical accounts, "Brian's Song" and "Sunshine...

...But in the restricted and difficult circumstances of this other world, locked in direct confrontation with the shadow self, there still remains some room for people to make what life they can, to exercise choice, even to grow beyond the crisis by examining themselves and their ways of living and to find or create a personal meaning within the suffering...

...the anger can be a sign of life, of prospective hope...

...The book is his answer, his created response to the inevitable and ultimate question of mortal illness: "Why was Johnny being subjected to this merciless experience...

...The books these people have made extend and share their experiences and insights with us so that our sense of life and the possibilities of living can be similarly heightened...

...The account of his illness, the weakness, the fevers, the tests (that awful passive verb: "To be marrowed"), the roller-coaster ride of fear and hope, elation and despair, shows how achieved his final response is...

...teaches American and British fiction of the nineteenth and twentieth centuries at Colby College in Maine...

...But however simplistic these responses are, "Brian's Song" and "Sunshine" still exert a powerful influence on our imagination of illness and dying...

...On the shelves of bookstores and at the checkout counters of supermarkets are trade paperbacks of such runaway best sellers as Betty Rollin's First, You Cry (1976), Cornelius and Kathryn Ryan's A Private Battle (1979), and Martha Weinman Lear's Heartsounds (1980...

...But patients do not always blame doctors for the bad news of their own illness...

...The disease may not be preventable, may be beyond human control, but the manner in which people in the medical profession treat a person who is ill is definitely a matter in which ordinary human expectations of justice and mercy apply...

...rigid schedules, rules, and diets...

...some provide practical advice...

...BOTH HEARTSOUNDS and First, You Cry were written as forms of therapy by the authors...

...the following year "Brian's Song" appeared as an ABC-TV Movie of the Week, and the screenplay, accompanied by stills, was issued in paperback...

...In spite of earlier moods of depression and despair, of pain and suffering, self-pity and isolation, he concludes that this is truly and fully his life and he would not trade places with any man...

...this may be "writing," they say, but this is not "Literature...

...It is Gunther's memoir not only of his son, Johnny, who died at the age of seventeen from cancer of the brain, but also of John Gunther himself and his former wife and their relationship...

...Rollin expresses her new feeling about herself and living in her conclusion...

...the fears of disease-spread or recurrence, of pain and death are compounded by fears of abandonment - of unacceptability, rejection, and isolation...

...But, as Rollin's account shows, one's way of seeing and being may change considerably, and for the better...

...As in the other books, writing Death Be Not Proud continues the love between Johnny and his parents that is fully manifested in the experience of suffering recounted in the book...

...The self that sought to be loved and respected, strong and superior, good and loving, becomes the other: inadequate, unworthy, powerless, hateful...

...Nor does the frequent charge that these books are "sentimental...

...Such thinking is usually allied with the claim that these works are "morbid" or "depressing...

...The book is a memorial to Johnny, his great intelligence and gentle disposition, and his long, courageous struggle against death, epitomized in his difficult and dignified walk up the chapel aisle to receive his diploma from Deerfield...

...when she finally did receive proper diagnosis she refused the standard treatment, the amputation of her leg before the cancer spread...

...This condition brought him for "the first time" in his life to appreciate and enjoy the "unspoken sustenance" he derived from his wife and to feel that his life was complete, that it was qualitatively enough...

...Like Alsop and the Ryans, Gunther discovers and demonstrates that what is inspiring is the human ability both to accept the disease and its probable outcome and to fight it at the same time...

...And that, as Jung knew, "makes a great many things endurable-perhaps everything...

...But in our critical suspicion of false emotion we must not become distrustful of all feeling...

...But the crux remains the conjoining of what the writer and the reader acknowledge is a real experience which is being represented, however artfully, in writing...

...There is a time to live but there is also a time to die...

...During this time Ryan underwent surgery, radiation, and estrogen therapy...

...So again we have only versions of the original autobiographical voice...

...but they all respond "Why not...

...The difference between the two books is that Martha Weinman Lear's account of her husband's illness and death of heart disease was written primarily during his treatment, so that it presents powerfully the anger of that time...

...He has allowed me to do what was important...

...Piccolo was not a reflective man, and he did not have much time for reflection...

...The mind is forced obsessively back to that body, its cycles of pain and alleviation...

...I have received more than my share of blessings...

...Betty Rollin's anger at the doctors, the "best" doctors, for not diagnosing and treating the lump in her breast when it was first discovered, leads her to see that for personal reasons, associating doctors with parents, she had always been trusting, too trusting, so that now she feels betrayed and resentful as well as "damaged...

...During his first season as a starter for the for the Chicago Bears, Brian Piccolo died of embryonal cell carcinoma after seven months of radical surgery, radiation, and chemotherapy...

...she says that her raised consciousness about death has raised her consciousness about life to the extent that there is a recurring jingle in her head: Am I doing what I'd want to be doing if I were dying...

...Now personal narrative, or autobiography, borrows back from the development of the novel, especially in its uses of multiple points of view, interior monologue, and time shift...

...He recognizes that in these years he has lived the most and that Bridge is his best book...

...alien instruments and machines...

...In addition to describing the ironic journey to the underworld, these books are also elegies, memoirs, and celebrations of people and ways of living that are at once achieved and imperiled, even lost, by disease and death...

...In Illness as Metaphor (1978), Susan Sontag argued persuasively that disease, especially cancer, which is of unknown cause and uncertain cure and which strikes randomly at individuals, becomes a locus for all our anxieties and fears...

...This is a powerful motive in all of these personal narratives of illness, but in some of these works the writer goes beyond the therapeutic process...

...her book is a loud wail of mourning and anger, of anguish...

...As much as Lear wants to be rid of corrosive feelings, she also wants to justify them by her careful account of the poor treatment her husband, himself a doctor, received, and to allow them into public discussion of illness...

...instead, they become what they truly are...

...Stewart Alsop's A Stay of Execution, A Sort of Memoir is different from any of the works discussed so far because it shows a mature man remembering and reflecting on a full life and the prospect of his own death during his last years...

...It makes a rather conventional sports biography...

...It is the reality of the human suffering represented in these narratives that evokes the emotions which are simultaneously both being recounted and dealt with in some way by the writing...

...At the other extreme stands another media event, "Sunshine...

...If confronted by the patient or the patient's family they may attempt to make it the patient's fault and claim that the doctor is being unfairly blamed for the bad news of the disease...

...But this is, unfortunately but inevitably, not always the case...

...Both the popularity of these narratives of illness and the confusion of our attitudes toward them are caused by unexamined feelings about illness and the process of self-confrontation which autobiographical writing represents...

...At any rate, the patient becomes immersed in the symptoms and treatment of the disease and the effort to go on living as best he can...

...The Ryans show that even without hope no one should give up, for there can be so much more to life than pain and suffering and fear of death: "Each day is like a gift to enjoy and savor...

...The differences are determined partly by the personalities of the people, and partly by the nature, treatments, and courses of their disease...

...He is the author of a book on Elizabeth Bowen published by Bucknell University Press...

...Such experience and the subsequent feelings make coping and acceptance seem almost impossible, but even the angry books show the process of self-examination necessary for going on with living...

...To see this great purpose achieved under such mean circumstances is what people seek in these books and find inspiring...

...They both show people's intense love of the life they had to live realized in their deaths...

...they show what George Eliot once called our "small shivering selves" how the unbearable may be borne, has been borne by others...

...In both Heartsounds and First, You Cry, the crises of illness and the anger caused by poor medical care lead the women to analyze themselves and their past relationships with their families as well as their present relationships with their husbands...

...Reader's Digest, Family Circle, Good Housekeeping, and other popular magazines regularly publish short accounts of such experiences...

...It expresses anger, but it also releases and contains it...

...it is not just literary...

...in turn, the screenplay and the tapes became the sources of Norma Klein's "novel," also titled Sunshine (1974...

...With death and dying there is life and living...

...Erich Segal's fictional Love Story is sentimental because it indulges rather than examines feelings it does not earn, because it in fact leaves out the true ugliness, pain, and fear of illness while pretending to represent them...

...But extreme situations provoke emotions one may not know and may not want to know one has, and there is no doubt about the authenticity of the circumstances of illness or the feelings in these accounts...

...The patient is expected to be a "good" patient-"a good boy or girl"-and accept obediently if not gratefully whatever the doctor says or does...

...The most prevalent and popular works, however, are narrative accounts of the experience of serious illness - articles, books, and films that try to render what it feels like to be grievously ill and to face the prospect of imminent death, either for oneself or for others...

...the emphasis of his narrative to Jeannie Morris falls on his early life and his experiences as a football player...

...painful procedures and mind-altering drugs...

...Jacquelyn Helton died, at age 20, of osteogenic sarcoma...

...None of this takes us very fat toward an understanding of these books, their immense popularity, or their profound effect on readers...

...These tapes were the basis of the popular television film of 1973...

...But the most signifcant differences depend on how thoroughly their lives are both lived and examined...

...But like First, You Cry, it provides a helpful corrective to the notion that people should express only "good" feelings about feeling bad...

...of adjusting whereby one comes to terms with death...

...to be able to recount it for others is "to kindle a light in the darkness of mere being" - to create more consciousness...

...AFTER THIRTY-TWO years in print, John Gunther's Death Be Not Proud remains the touchstone for all these accounts of illness because of its profound, tragic power to proclaim the value and meaning of human life from within the experience of terrible suffering and loss...

...He undertakes this task in a jauntily analytical way, but he tells how the diagnosis of acute myeloblastic leukemia (it was actually smoldering or aleukemic leukemia) produced in him "a terrible sense of aloneness, of vulnerability, of nakedness, of helplessness...

...during the last eighteen months of her life she kept a tape-recorded diary as a legacy for her daughter...

...he continued to kid his family, teammates, and friends about his illness, and he never acknowledged the possibility of his death...

...At first Jacquelyn neglected her sore leg and did not seek adequate medical care...

...Her doctors could not talk her into following the prescribed treatment...

...It is written with an expressly didactic, inspirational intent: "What I am trying to tell, however fumblingly and inadequately, is the story of a gallant fight for life, against the most hopeless odds, that should convey a relevance, a message, a lesson perhaps, to anybody who has ever faced ill health...

...Heartsounds and First, You Cry both show in different degrees that to allow oneself to feel, express, and even honor one's own anger are the first steps in liberating oneself from the crisis...

...Each morning for the past two or three years when I have wakened the first words I've said are, "Thank you, God, for this fine day...

...It has not mattered if the weather was bad or good...

...But Gunther finally sees Johnny's life and this memoir "as a mournful tribute not only to Johnny but to the power, the wealth, the unconquerable beauty of the human spirit, will and soul...

...In the painful, frenzied, and rapid rush towards death, Piccolo began telling the story of his career to Jeannie Morris, who published it, along with his medical records and an account of his death as Brian Piccolo, A Short Season (1971...

...This is not false piety or sentimentality...

...As narratives these books about illness try to order as well as represent, to make some sense of the experience of human suffering and, if possible, to redeem it, to make some good come of it...

...it is submerged by the dominant and romantic image of the dying young mother who accepts death over being "a cripple...

...In most cases the plots take an inevitable tragic form: a "great" person in the common sense of one filled with life and talent and promise struggles heroically against disease, an enemy, a fate, which may ultimately vanquish the person...

...A more common dismissive attitude is that these books appeal only to a base, voyeuristic pleasure in the suffering of others, the impulse that brings crowds to scenes of murders, traffic accidents, and fires...

...The difference between someone's not being able to accept cancer and choosing not to accept it is crucial, but there is not sufficient evidence from Piccolo himself to determine whether he made a conscious choice...

...Although much contemporary fiction chooses to deny the satisfactions of "old-fashioned" realism, the "common reader" so honored by Samuel Johnson and Virginia Woolf is still magnetically drawn to meaningful personal accounts of actual human experience...

...Ultimately these books are concerned with how to live, and how to bear the unbearable...

...I continue to thank Him...

...contributing to a powerful mythology of illness, as in "Brian's Song" and "Sunshine," which also generated a hit song by John Denver...

...STILL THERE are differences in the way the writers of these personal narratives respond to these issues...

...But in the disorder, suffering, and death of the tragic conflict, living itself and the values that give life meaning are affirmed - love and work and the possibilities of community, of caring...

...The final word of the book is, fittingly, the ancient Hebrew toast, "L'chaim-To Life...

...The daylight world of living becomes the hospital, a place of omnipresent fluorescent light, stainless steel, and ceramic tile...

...The image presented in these versions is that of a young person who does not deny but accepts, even seeks, her own death...

...As much as she senses people turning away from her anger, and as much as she herself wishes she could turn away from it, she still feels "it would seem somehow obscene not to feel anger...

...the crucial difference turns on not only how but how well people can accept all that they have experienced...

...For Gunther, Johnny and the love he and his parents shared and the brain tumor and death are all part of a universal process in which the writing of the book joins and extends: "Johnny transmits permanently something of what he was, since the fabric of the universe is continuous and eternal...

...There are, of course, many fine doctors who are capable of treating their patients as people, acknowledging their right to know, to make decisions about treatment, and most of all to be treated with dignity, respect, and the sympathetic understanding they deserve...

...The most rewarding moments, the best writing I think I've ever done, the love I'd had from my wife and children and the joy I've taken in their accomplishments-all have been realized in the years I've had cancer...

...This is an accurate analysis, for not only are people, even independent, tough-minded and tough-talking people like Betty Rollin, too willing to trust their physician, but also most doctors encourage unquestioning acceptance of their opinions and treatment...

...Betty Rol-lin's account of her mastectomy is written at a greater distance from the event, so it is more controlled...

...The ordinary dreams of the future, of infinite time, become the nightmare of the finite moment of this test, this operation, this treatment...

...others, such as Lawrence Le Shan's You Can Fight For Your Life (1977), the Simonedwin J. kenney...

...implication here is that the emotions presented and evoked by these personal accounts are somehow unearned...

...The isolation is claustrophic...

...Far from being vulgar, the best of these personal accounts of illness attain a sacred function...

...Doctors make mistakes in diagnosis, decisions about treatment, execution of medical procedures, and especially in their relationships with their patients...

...The power of Johnny's spirit, or the human spirit as it expressed itself in Johnny, remains alive, not only in the minds of those who knew him, but also in the minds of all who read the book...

...This insight allows his conclusion to be philosophic and accepting, echoing the diction, rhythm, and tone of Ecclesiastes: "A dying man needs to die, as a sleepy man needs to sleep...

...it is death's other kingdom, the world of "darkness," into which one descends and in which one confronts the repressed, negative self...

...their characters are not changed...

...Taken together these books add up to what now amounts to a new" tradition" of writings about illness that began with John Gunther's Death Be Not Proud (1949), and includes such other works as Stewart Alsop's Stay of Execution (1973...

...that is one of its great sources of strength...

...Like many other people whose stories are told in these personal narratives, she finds something redemptive in her ex- 4 perience of illness...

...Death Be Not Proud itself achieves the transcendence John Gunther sees in his son's life and death...

...Lear and Rollin were trying to order their experience and feelings as they were living them so that they could understand and therefore gain some control of their lives...

...I have been able to cram so much into my life but it has been brimful of happiness...

...As he approaches the completion of Bridge, Ryan experiences an extraordinary moment of both feeling and insight: the intense life he has been living is what has been keeping him alive...

...This simple, immediate, and direct response of fighting until the end was what those who loved Brian Piccolo-like Gale Sayers-salvaged from his awful death and transformed into heroic legend...

...The novel in English began by pretending to be "real," not only in the sense that it was assumed to represent what was real in experience, but also in the sense that the form of the novel itself pretended to be an actual form of personal narrative: letters, diaries, criminal and spiritual confessions...

...To be seriously ill is truly to enter another country...

...This is a difficult pattern of response to break out of, but the pain Rollin suffers from her adherence to it is finally what liberates her from it...

...Such action fulfills what Jung described as "the sole purpose of human existence...

...Al-sop's intention in his book is specifically to describe "the strange, unconscious indescribable process...

...The pathos of both the film and novel is derived from a young person's desperate appreciation of the beauty and joy of her life and love of her young husband and child attained by her own confused death wish...

...The book she writes is both the process and the product of the violent self-confrontation and analysis her illness forced on her...

...So they are also love stories, the love of friends, husbands and wives, parents and children...

...Indeed, there is a fine paradox of literary history at work here...

...Literary critics are not interested in such narratives just because they are so popular...

...Since Elisabeth Kubler-Ross's On Death and Dying (1969), discussions of illness and death are everywhere in our culture...

...It is formally the most complex of all these narratives because it is composed of journals and tapes that the Ryans kept separately during the last four and a half years of Ryan's life when he was dying from cancer of the prostate...

...it is directed at the medical profession, and with good reason...

...This point needs to be developed further, for the generally accepted cliche is that patients always blame the doctor for their illness...

...According to Morris's report he did not burden anyone, not even his wife, with his inner thoughts...

...In ordering and redeeming suffering, personal narrative includes elements of other literary forms...

...Both the book and the film about him dramatize Piccolo as the phys-ical man who responded to the assaults on his body from the disease and its treatment with the same physical courage and open affection for his family and friends that he displayed all his life...

...that sense of completion, of balanced tension, of full involvement and heightened consciousness is what these books convey...

...They show us people under extreme duress who have fully lived the lives they had, who became fully what they were to be, and who fully realized and could express what it meant to them...

...She chose radiation and chemotherapy, only to refuse them when she could not tolerate their side effects and when, really, it was too late to save or even prolong her life...

...Although Sontag objects to this, to be sick immediately invokes metaphoric and symbolic thinking...

...against steadily increasing pain and humiliating changes in his body, fear of death, and anxiety for his family, Ryan worked to write A Bridge Too Far, the third volume of his history of the European theater in World War II...

...Lear's book is written while she is still in the midst of the process of trying to free herself of "bitter and corrosive feelings...

...This is Alsop's characteristic response...

...People come to these books because they sanctify life...

...The special achievement of autobiographical writing has always been to represent an actual life both as it was lived and understood by the same person so that its meaning, or a meaning, is apprehended...