Illness and Suffering   /   Fall 2006   /    Articles

At the Gates of the Labyrinth

A Meditation on Suffering

Paul A. Komesaroff

After the tsunami, Seenigama, Sri Lanka, 26 January 2005; © Prakash Singh; flickr.com

The tide has turned at length:
Ebb with the tide, drift helpless down. Useless to struggle on…
How must I deal with grief ?…
See where my outcast limbs have lain! Stones for a bed bring sorrow small relief. My heart would burst…
For those whom Fate has cursed Music itself sings but one note—
Unending miseries, torment and wrong!

—Euripides 22xEuripides, The Women of Troy, from The Bacchae and Other Plays, trans. Philip Vellacott (London, England: Penguin, 1973), 93.

 

I should like to introduce three people I have met over the last year:

Anka was fifteen years old in July 1995. On the day the troops came to Srebrenica, all the people were gathered together in the town center. Anka’s father was the rock of her life, her protector and mentor, a source of knowledge, strength, and unlimited love. At first, the children thought it was a holiday and were happy, but Anka sensed her father’s anxiety. “Don’t worry, my little princess,” he said, but she knew he didn’t mean it. She watched him standing tensely as she and her mother were bundled into buses and driven away. She never saw him again. Suffering unspeakable privations, Anka and her mother made their way to Germany and eventually to Australia. Now, ten years later, she speaks three languages, has two university degrees, and has just married. She has thought about her father, and her loss, every day. She wonders what he would have thought, whether he would have been proud of what his little princess has been able to accomplish. She continues to draw a deep, sad inspiration from his love. Her sense of loss, however, and her deep wounds, are unabated.

Pimbao Narang lives in a village in northern Thailand with her two children. In 1993 her husband became ill. At first he told her that the doctors had diagnosed cancer, but as he neared death, he confessed that he really had AIDS, which he had caught from another woman. By this time Pimbao herself was infected. When she heard the news, she was speechless with shock for days. Her first reaction was furious anger, but she was able to overcome this, and she continued to nurse him until he died in her arms. She has since devoted herself to organizing a self-help group for women infected with HIV in her village. They come together and make clothes, soft toys, and small bags for sale, giving them an income and providing a chance to share their suffering and support each other. She works tirelessly, without any trace of bitterness, despite the debility arising from her own medical condition.

Dr. Managayam is the Medical Superintendent of a hospital on the east coast of Sri Lanka. After the 2004 Asian Tsunami struck, he rendered all possible assistance. When I visited him as part of an aid team, he talked to our delegation and listed the needs of his hospital. As we stood to leave, he grabbed my arm and said: “I must show you the photos.” He took us to his computer and proceeded to show photographs of all 452 people who had died in his village that day. They included children and babies, young men and women, and elderly people. Many were disfigured or horribly bloated from the effects of the water. He went through every photo, frequently exclaiming, “Look, she is only a baby! He is an old man….” When he had finished displaying his grisly inventory, he repeated softly: “I didn’t leave my post. I didn’t leave my post….”

* * *

What is the experience of suffering? How do we make sense of it? Why are we so fascinated by the suffering of others? What effect does it have on us to witness someone in its midst? Is there anything we can learn from it? I want to tell a story that arose not out of a natural or social catastrophe but, at least on the surface, out of much less spectacular circumstances: the last illness of an old woman.

This is the story of Kakima Oqil and her children. Mrs. Oqil was an 85-year-old woman who was dying of bowel cancer after a long, difficult illness. She has three surviving children: her daughter, Sebati, aged 55, and her sons Askhar, aged 59, and Chajim, aged 57.

Mrs. Oqil had developed abdominal pains two years ago, which caused great distress. For some reason the cause of the pain took many months to diagnose, during which repeated—as it turned out incorrect—reassurances were given that there was no serious underlying problem. During this time her physical suffering was considerable. She had been admitted to the hospital on several occasions with severe, unrelenting pain, but attempts to control it were ineffective. When the diagnosis of metastatic cancer was finally made, the family felt deceived and betrayed. Their trust in their medical advisers was never restored.

Kakima and her husband came from the same small village in Central Europe. They married young and emigrated to Australia in their early twenties. The children were born soon after, and the father supported them by working in an engineering factory. Tragically, however, he died in an industrial accident when Sebati was barely two. This was a devastating event for everyone, including Kakima, who had had little education and up to that time had never worked in paid employment. Up to her dying days, she would recount the wave of blackness that overcame her when she received the news of her husband’s death. With great effort she made a deliberate, conscious decision. This was the great turning point of her life: in one moment she was transformed from a young wife with a happy family who barely left her house to a determined, tough woman who went forth to do battle with the world.

Out of sheer necessity and with an obdurate determination for which she became notorious, Kakima stepped into the role of family leader. Her uncompromising toughness surprised even herself. She learned English. She started a small importing business, which she steered to success against ruthless competitors. With little education of her own, she supervised the education of her children. As far as can be determined, the possibility of another relationship with a man was never considered.

In her culture, the men usually made the decisions. In the absence of a man, Kakima assumed the role flawlessly and demanded full equality. This and her uncompromising single-mindedness aroused consternation and some antipathy in her community, but she was strong enough to bear that burden, and eventually her role and status were grudgingly accepted.

At home, a rigorous regime was enforced. There was little time for recreation. All the children had assigned tasks and expected punishment if they were not completed. Among themselves the family spoke the language of Kakima’s birth. They were devout Muslims. Kakima selected the future careers of her children: Chajim was to take over the business, Sebati was to obtain a university degree and occupy a professional role, and Askhar was to be the family’s support person.

Although she was urged to do so, Sebati never married. Askhar, by contrast, was prohibited from marrying. His task was to care for his siblings, his nieces and nephews, and his mother. His contribution was acknowledged—and explicitly referred to within the family—as a “sacrifice” because it meant foregoing having both children and an education. He worked in factories and at menial jobs to help put his sister and brother through school and university. When his brother’s marriage broke up, he looked after the children during the day so that his brother could still go to work. When his mother became ill he was the one who assumed primary responsibility for her daily care.

Of the three children, Sebati undoubtedly dominated. She had a strong personality herself and was forceful, well-read, and articulate. Unlike Askhar’s phlegmatic nature, hers was mercurial, temperamental. Like other people of her culture she tended sometimes to display her feelings with disarming openness. She considered herself blunt but honest. Others no doubt from time to time interpreted her brusque and insistent manner as rude and aggressive.

Sebati was the spokesperson and openly expressed the children’s disquietude following her mother’s painful illness and the trauma associated with her diagnosis. Perhaps emulating Kakima’s own style, she frequently confronted the doctors about decisions they had made, disagreeing with them and questioning closely their judgment and intentions.

* * *

The experiences of grief and pain are very personal and vary widely. They enter our familiar, taken-for-granted bodies and create an infested space within it, reorganizing “our lived space and time, our relations with others and with ourselves.”33xDrew Leder, The Absent Body (Chicago, IL: University of Chicago Press, 1990), 73. They produce a state of passivity, helplessness, abandonment, and solitude. The comfort and safety of the home, of the familiar dwelling place of the body, are replaced by a sense of transience and contingency.44xJean-Paul Sartre, Being and Nothingness, trans. H. Barnes (New York, NY: Washington Square, 1971), 438. In the setting of illness and hospitalization, the security of home gives way to the vulnerability incurred by entrusting oneself to the care of a stranger.

Pain and grief are among our most private, isolating experiences. They sap our freedom and ability to act. Pain in particular requires that we give up our freedom, become patients, hand our bodies over to others to probe, palpate, investigate, and dissect. At the same time, however, they insinuate a “half opening that a moan, a cry, a groan or a sigh slips through,” an open, fragile “call for aid, for…help from the other…whose alterity…promises salvation.”55xEmmanuel Levinas, “Useless Suffering,” Entre Nous: On Thinking-of-the-Other, trans. Michael B. Smith and Barbara Harshav (New York, NY: Columbia University Press, 1998), 93.

* * *

Kakima suffered great pain during her illness. This caused distress and humiliation both to her and to her children. She had experienced pain before, of course: in her culture the experience of childbirth was never diminished by anaesthetics. But the pain of her illness and the apparent aloof indifference of the medical practitioners had left an indelible impression on the whole family.

Sebati told me one story about the early phase of her mother’s illness. On one occasion—when Kakima had been admitted to the hospital for investigation—Sebati came to visit and found Kakima crawling on the floor begging for relief, with doctors and nurses walking by, ignoring her. Sebati called her brothers, and they advised the doctors that if this happened again there would be dangerous consequences. Kakima was rapidly discharged from this hospital and did not return.

Kakima herself spoke to me of her pain. In spite of the fact that she had thought that she knew pain well, she had been surprised by how hard it was to bear and was herself deeply resentful of the humiliation she had been forced to undergo. In the end, the pain was relieved, albeit too late to save her life. For Kakima herself, although this was a crushing disappointment deep down, she was not surprised. For Sebati and Askhar it was the cruelest cut of all.

Askhar had already cared for his mother for many years. When the diagnosis of inoperable cancer was made, his devotion to her intensified. While she was in the hospital, he visited daily from early morning until late at night. Sometimes, when she was especially distressed, he would sleep on a mattress on the floor of her room. The brother and sister took turns feeding her, washing her, combing her thinning hair. They adorned the walls of her room with photos and memorabilia. There was a picture of Sebati at seventeen when she won a beauty contest, with luscious, long golden hair and a look of radiant happiness and confidence in the future. There was a photo of the children and their mother at the seaside during some holiday in the past. There were also religious objects, including a sign saying, perhaps a little provocatively, “Trust Allah, Not Your Doctor.”

Sebati and Askhar saw themselves as their mother’s caregivers and protectors. They prayed together with her in her room. They were her voice to the doctors and nurses. They scrutinized every aspect of her medical treatment and her nursing care, always insisting that the highest standards were maintained. On occasions, they felt compelled to point out deficiencies in the hospital procedures. Sometimes this required a few sharp words, but these moments passed quickly.

* * *

For an individual, the experience of suffering, grief, or pain wells up as a particular form of engagement with the world. It induces a kind of disorientation, a loss of coordinates. The world that was previously concrete and fixed starts to appear contingent, uncertain, precipitous.

As a perturbation of the spatial and experiential boundaries of embodied experience, suffering opens up new insights. It blurs the boundaries of what seemed distinct and clear. It challenges the inner, physical economy of the senses and also the outer, social ones. Even if, from the point of view of the individual undergoing it, suffering does not in itself have meaning, its relation to sense itself allows it to vary bodily and in social experience and therefore to act as an organon of meaning.66xThere is nothing remarkable about this: the same can be said about many other modalities of bodily experience, including illness in general.

The person suffering can be strong or weak, brave or cowering, and those around her can also suffer. This was the case with Kakima and her family. They contemplated the anonymous and impersonal power that had taken over their lives. They were taken to the edge of meaning. Instead of a sense of benign plenitude, of satisfied completion, they found themselves facing an empty void, an indescribable horror of meaninglessness.

The reality of death is often encountered in this way, as an experience of a weakness in the face of an overpowering world. It is an experience of the horror of the absence of the world, of an absence of meaning in which all my abilities become unreal, until I myself disappear in its somber passivity. The infinite passivity of dying is also the gradual closing of a future of unknown but open accomplishments. It is a suffering that does not pass away, can never become closed in either time or space. The passivity of death is, therefore, not just a condition that arises at the conclusion of life: it is always there at its boundaries. It is not just a distant, imagined end point: it permeates life from the beginning.

It is important not to conclude from this that the experiences of Kakima, Sebati, and Askhar were merely echoes of those recorded over the ages. On the contrary, their suffering was novel, unique, and singular. Kakima’s experience of her illness and imminent death was hers alone. That which makes a person singular, what makes her this singular person, is not sayable. Sebati and Askhar decorated Kakima’s hospital room in their own fashion, out of their own personal histories. The candles, the aromas, the music, the artifacts, the photos, the signs on the walls, the food: all of these evoked rich memories and experiences unique to the lifeworlds from which they came.

Suffering breaches my individuality, as the passivity that gives rise to the presence of the other. It thereby also gives rise to the community of human beings dispersed into singular beings who are still dependent on each other. In this sense it is never entirely or exclusively my own. The true experience of suffering entails that it is not a solitary event. I am always concerned with the suffering of the other.77xMaurice Blanchot, The Unavowable Community, trans. Pierre Joris (New York, NY: Station Hill, 1988), 21.

Kakima’s suffering was therefore both hers and at the same time not hers alone. Her pain opened up a cascade of reflections in all whom she touched, in Sebati, Askhar, and me. Instead of finding the ground of our own individuality, that which is properly ours and in regard to which we cannot be replaced, her travail exposed us to the dissipation of ourselves, to the experience of an insufferable anonymity. It opened us as individuals to the suffering of other individuals. It made possible our responses of understanding, of responsibility, or of magnanimity.88x“We must go back to a moment of prediscursive experience, recommence everything, all the categories by which we understand things, the world, subject-object divisions, recommence everything and pause at the ‘mystery, as familiar as it is unexplained, of a light which, illuminating the rest, remains at its source in obscurity.’” Luce Irigaray, An Ethics of Sexual Difference, trans. Carolyn Burke and Gillian C. Gill (New York, NY: Cornell University Press, 1993), 151; quotation within the quote from Maurice Merleau Ponty.

When Kakima, Sebati, and Askhar looked to me, it was not for help but for understanding, and I knew what they were asking. Kakima’s sigh of resignation at the end of a long life of tempest and bitter struggle was perspicuous to me. The pathos of Sebati’s and Askhar’s devotion, the soft vulnerability beneath the harsh exterior, touched me deeply. I sensed their fear, the desolation they were facing, the loss of the obdurate rock to which they had been secured.

* * *

No one ever suffers alone. The other, suffering, turns to me. “The surfaces of the other, surfaces of suffering…appeal to me and make demands on me…. The other faces me… exposing to me the nakedness of his or her eyes, unshielded and unclothed…. The other faces me with his or her words…which dissipate without leaving a trace…and whose force I can resist by doing nothing….” 99xAlphonso Lingis, The Community of Those Who Have Nothing in Common (Bloomington, IN: Indiana University Press, 1994), 32–3.

The cry of the one suffering always evokes a response of some kind, even if it is merely the response of pure recognition. However, recognition alone does not necessarily ease the pain. In Euripides’ play, The Women of Troy, quoted at the beginning of this essay, Priam’s wife Hecabe is a captive of the Greeks after the fall of Troy and the slaughter of the men. She is waiting with the other women to hear what will happen to them. To Hecabe’s lament the Chorus responds: “Your cry of agony came to us, and we all / Shuddered with nameless fears.” Hecabe can only reply with quietistic resignation: “Let me lie. There’s no comfort in your comforting, / Here in the dust pain such as mine belongs—today’s, / Yesterday’s, and tomorrow’s pain….”1010xEuripides, 106.

“What is it that locates for me the alien imperative on the surface of the other which I see in the midst of the order of nature, of the practicable field, and of society? It is the sense of this surface as a surface of suffering.” In the face of the harsh contingency of the natural world, I encounter an imperative other than the laws of science, “an imperative for an order other than that of the finalities of the layout of things.”1111xLingis, 29.

Suffering is one of the principal sources of ethics. It does not in itself have meaning but can generate meaning, shared meanings. That is, it is not a property of the individual sufferer. It is shared between us, immediately, primordially, as a condition of our mutual existence.1212xLevinas, 94. But it is more than this. Suffering as a shared experience is not just a common property of a multiplicity of consciousnesses. It does not reflect an “altruistic” or “caring” state of mind. The sharing itself is an expression of a foundational non-indifference, a responsibility of one to another. It arises prior to any contract that would specify precisely the moment of reciprocity. In Levinas’s words: “The interhuman is also in the recourse that people have to one another for help, before the astonishing alterity of the other has been banalized or dimmed down to a simple exchange of courtesies….”1313xLevinas, 101.

* * *

But that is not quite how it happened in this case. Here, there was no magnanimity on either side. At first, the hospital staff was touched by the family’s devotion. Gradually, however, misgivings developed. They began to regard the children’s refusal to accept their mother’s inevitable death as importunate, even cruel. They attempted to move from active, life-sustaining therapy to symptom relief and palliation, but Sebati and Askhar not only directly countermanded such a change but angrily accused the doctors of neglect and even negligence. Sebati and Askhar spent even more time at the bedside, offering their mother support and protection. A few weeks passed. By this time there was open hostility between Kakima’s children on the one hand and the doctors and nurses on the other. The authorities decided to step in. There needed to be limits, they explained firmly. Visiting hours would be restricted. The orders of the doctors and the nurses had to be obeyed. The signs around the bed—“Trust Allah, Not Your Doctor”—had to be removed.

Sebati tried to ignore the new regulations, but the hospital was intractable and advised that they were not negotiable. Sebati continued to ignore them. Staff removed the signs in the middle of the night. Sebati put them up again in the morning. The doctors and nurses became increasingly unsettled. They could see only the excess of the children’s grief and grew alarmed when they realized that it could not be brought under control. The unfathomable emotion seemed irrational, the single-minded intensity increasingly terrifying and foreign.

There seemed to be no alternative. The authorities sought a court order to appoint an official guardian to make decisions regarding all aspects of Mrs. Oqil’s affairs. Sebati and Askhar were neither consulted nor represented. Expert witnesses were called. The family was criticized for acting against their mother’s interests by rejecting medical advice. As expected, the court found in favor of the hospital and appointed a guardian to take decision-making power away from Kakima and her children.

The guardian wasted no time. Within hours he had issued a range of injunctions. Kakima would be moved to a nursing home. Sebati and Askhar were to be allowed to visit for only a few hours a day. They were not to feed their mother or to contribute to her care in other ways. They were not to take her on walks in a wheelchair. They were not to administer her herbal medicines. They were not to bring electronic devices or cameras into the hospital, and they could be searched to ensure that they did not attempt to do so. There was to be no wailing, and there could be no pictures on the walls or references to Allah. Praying would not be permitted.

Sebati and Askhar were incredulous, devastated. They felt betrayed and wronged. Sebati described the moment when she received the letter from the guardian, when she “felt a sense of deep coldness piercing her heart.” She and Askhar were, after all, only doing their duty. Their cries, their mother’s cries, it seemed, were being answered not with compassion but with poisonous hostility and vengeful bitterness.

Those who stood up for the patient—including myself, her general practitioner, and a few members of the staff—became the targets of the same hostility. On one occasion when I visited Mrs. Oqil, I was advised that my role was regarded not as that of a doctor but rather as merely that of a friend, and the police were called to remove me from the hospital premises.

And what of Kakima—an old woman in a dry month waiting for rain? She was not consulted. The guardian did not visit her. No interpreters were called to help the staff or security guards seek her opinion. Her calls for her daughter and son to be beside her in her dying days went unheeded.

* * *

Not all cries for help are answered. Indeed, this is the age of cries for help denied. Every day we turn away refugees. In Australia, people are allowed to drown as ships that could save them stand by, as happened on October 19, 2001, when the Australian Navy watched as 353 refugees died in the Timor Sea when a decrepit boat, code-named the SIEV X, capsized and sank. We invade and bomb other countries, directly or indirectly causing the death and injury of hundreds of thousands of civilians. We count our own dead but not those we kill. We ignore the needs of indigenous peoples whose cultures are uprooted and dislocated by economic change, or of indigent people within our own borders suffering because of lack of adequate nutrition, shelter, education, or health care.

It is hard to say if, in the post-September 11, post-Srebrenica, post-Iraq, post-Rwanda, post-Abu Ghraib, post-Guantanamo Bay world, there will be more denied, unacknowledged, unanswered cries from the suffering. It is hard to say if, in the age of the War on Terror, we have become crueler and less tolerant, whether imprisonment without trial, guilt by association, and fear of other cultures are worse than in earlier times.

Sebati and Askhar obviously hit a raw nerve. Despite official commitment to cultural diversity and tolerance, the sheer intensity of their devotion to their mother and their grief at her illness threw out a deep challenge to the established system of care. Their raw emotion, their unfamiliar expressions of pain disrupted the calm inevitability of institutional life. Their wild, uncontainable passion was experienced as darkly threatening, like the uproar in the jungle of Conrad’s Heart of Darkness, where the “black shapes crouched, lay, sat between the trees, leaning against the trunks, clinging to the earth, half coming out, half effaced…in all the attitudes of pain, abandonment, and despair.”1414xJoseph Conrad, Heart of Darkness (New York, NY: Bantam, 1960), 24.

I hear their cry. I am there to bear witness to Sebati’s and Askhar’s testimony, as I and others do to that of Anka, Pimbao, and many others. I, too, discern the miscarriage of justice, the systematic cruelty of the system that punishes and criminalizes those who cannot fathom their own suffering. I am dismayed by the irrationality and injustice of the system that claims to act in the name of reason and justice. But this is not so much a case of two truths coming into conflict with each other: rather, it is two untruths, two forms of unreason. This is not a clash of civilizations: it is a clash of abysses, of one species of unreason or incomprehension in intolerant opposition to another, equally implacable, equally uncompromising.

It is true that there is a radical difference between the suffering of the other—the testimony that he or she bears to the pain and the terror that shakes his or her body—and the reply to the call for help that arises in me as an external observer. I am the witness who can testify from afar, not with a detached, objective account, but as one who affirms the experience of the patient and supplies it with meaning. The suffering in the other is unforgivable in me, solicits me and calls me, and suffers in me.

Why am I fascinated by suffering, I wonder to myself? Why do I travel across the world seeking it out? Why do I actively encourage sufferers to entrust me with their testimony? Is it out of a sense of personal guilt, that it is they who suffer and not I? I am troubled by the seductive attraction of the suffering of another, of the deep emotional power it exerts over me, and I am uncomfortable with the vicarious hallowedness acquired by contact with those who have personally suffered.

Am I drawn into the Oqils’ predicament because of events in my own life, because my own parents are faltering too, because my own mother sadly, poignantly, also faces physical and mental decline, entering a new, touching innocence?1515x“In essence a testimony is always autobiographical: it tells, in the first person, the sharable and unsharable secret of what happened to me, to me, to me alone, the absolute secret of what I was in a position to live, see, hear, touch, sense, and feel.” Jacques Derrida, Demeure: Fiction and Testimony, trans. Elizabeth Rottenberg (Stanford, CA: Stanford University Press, 2000), 43. Is it because their story dramatizes so poignantly my own imminent one, in which I, too, will be cut adrift from that which once sustained me? Am I witnessing my mother’s death, my own death? Why am I compelled to bear witness, to listen to the stories and record them? I am like the mother, Sebati’s mother, my mother: I am the archive, the record of their personal histories, their hopes, and their pain. I am compelled to listen, just as they are compelled to tell.

As Giorgio Agamben has pointed out, the need to relate their stories was the force that kept many people alive during the Holocaust.1616xGiorgio Agamben, Remnants of Auschwitz (New York, NY: Zone, 1999), 15. For some, like Primo Levi, once the story was told the compulsion to continue living disappeared. But what does it do to one to witness suffering? What is the permanent mark, the stigma that exposure to the pain of another leaves engraved on one’s own life? Can any of us escape the private, enduring horror of Dr. Managayam, the Sri Lankan doctor who heroically tended the wounded and the dying after the tsunami, who never left his post, for whom now, every time he closes his eyes, the terrible images of the victims well up viciously and accusingly before him?

Dr. Managayam is compelled to relate his story again and again, in an attempt to depict experiences close to, or beyond, the edge of meaning. Philosophers, too, have attempted to provide meaning for such experiences. However, suffering is not a philosophical state and cannot be characterized according to a set of generic, universal principles. Its singularity is unique and irreducible. Even to attempt to describe it in language is to attenuate its meaning.

Attempts to describe suffering are beset with a paradox. On the one hand, the “need to lend a voice to suffering is a condition of all truth. For suffering is an objectivity that weighs upon the subject; its most subjective experience, its expression, is objectively conveyed.”1717xTheodor W. Adorno, Negative Dialectics, trans. E.B. Ashton (New York, NY: Seabury, 1973), 17–8. On the other, “rational cognition” is unable “to cope with suffering…. [I]t can never express suffering in the medium of experience, for to do so would be irrational by reason’s own standards. Therefore, even when it is understood, suffering remains mute and inconsequential.”1818xTheodor W. Adorno, Aesthetic Theory, trans. Christian Lenhardt (London, England: Routledge and Kegan Paul, 1984), 27. That which this singular person experiences, that which makes me singular, is not sayable.

* * *

The conflict between Sebati and the authorities intensified and became even more acrimonious. The latter were evidently taken by surprise by the family’s staying power and their dogged determination to fight back. In fact, from the family’s point of view, they had no choice: they had to regain their mother’s body, just like many had to do in the battles on the plains of Troy. They became increasingly frantic. Court battles were initiated, resulting in a long and bitter fight, much anxiety, and many tears. I testified to the commitment of Sebati and Askhar and to Mrs. Oqil’s own wishes.

In this fight, at least, we eventually achieved success. The guardianship order was lifted—a rare moment of triumph and somber celebration. The family felt vindicated. However, the triumph was short-lived. The conflicts with the professional healthcare system and the institutions, as it happened, were far from over.

Her authority renewed, Sebati proceeded to move her mother from one institution to another. Kakima’s condition continued to deteriorate until she was barely conscious. Nonetheless, Sebati’s demands for active investigation and treatment only became more insistent. Every day she demanded blood tests, new medical assessments, additional treatments. She and her brother remained at their mother’s side, now between them maintaining an unrelenting twenty-four-hour-a-day vigil. The care received at the hospital was never enough; the standards of nursing were always inadequate. Every time their mother’s condition deteriorated, they demanded new treatments, fresh specialist assessments, additional blood tests, or maybe even a new hospital.

I talk with Mrs. Oqil. It is the last conversation I will have with her. She makes clear that she trusts Sebati to make whatever decisions are necessary and states clearly that she herself has no particular requests. Nonetheless, even in her diminished state, she continues to dominate her children. She demands to be fed, to be changed. She expects them to be there at all times, or at least this was their understanding of her expectations. Her expressions, her occasional words, are invariably interpreted as gestures or signs of disapproval. With time, however, she becomes weaker, loses the ability to speak at all, and lapses into silence.

I talk also with Sebati. I encourage her to acknowledge that her mother is dying. “She has an incurable illness,” I say. “She herself is reconciled to her fate. You and Askhar have done your job admirably, but you have to accept that the process is inexorable, the end inevitable.” Sebati becomes angry and forbids me ever again to talk in this way. Her mother will recover and will go home with her, she says. They will travel together. They will do things like in the old days, or rather things they had always said they would do. Did I not recognize that she was better today? She has surely turned the corner. Sebati has given up her business, her livelihood, to care for her mother. She would give her own heart, if that would save her. Her mother lies silent and motionless. Sebati weeps convulsively.

Sebati and Askhar take their mother from one hospital to another—eight hospitals at last count. At each one the same pattern is repeated: the staff are at first touched by the devotion of the children and acquiesce to their demands, then they become diffident about the appropriateness of continued, burdensome treatment, then differences begin to surface with Sebati and Askhar, eventually degenerating into open hostility and an attempt to regulate their conduct with the help of security staff. Sebati and Askhar themselves follow their own fixed trajectory, resulting in each case in deepening anger and bitter recriminations.

* * *

Five months have passed since Kakima was admitted to hospital for what was thought to be the last stages of terminal care. Now in her eighth hospital, she is at best barely conscious. Sebati and Askhar are sitting by her bed, sponging her brow, adjusting her oxygen mask. The medical and nursing staff move in and out, perplexed, frustrated, seething. Sebati’s anger is unabated.

The less Kakima is able to speak, the more vocal Sebati becomes. She writes me e-mails and sends text messages, sometimes many pages long. They frequently arrive in the middle of the night. The language is often opaque and obscure. She expresses her outrage at what she believes to be the inadequate care her mother has received. She blames everyone, accepts and forgives no one. After such knowledge, she asks, what forgiveness is possible? She spends hours typing into the computer, in desperation, almost in a frenzy. The pain is palpable. Sometimes she just writes chains of single words or phrases: Outrage. Justice. Horror. Devastation. Obscure pain. Saturating darkness. Her cry is shrill but poignant as it pierces the silence. Still her mother does not die.

The blank vastness of her sadness saps her strength, she writes. A horror, an amorphous, nameless horror, has engulfed their lives. When she heard that the doctors would no longer continue treatment, it was as if an explosion had gone off next to her, and she was pierced by many shards of glass. She is angry at the doctors for abandoning her mother and at the nurses for their pretense at solicitude. The world seems to be floating, incoherent. No one can understand—how could they, with the solid ground still under their feet?

Wild sorrow, dumb pain. Today, her mother is white as a ghost. Askhar is crying. There is a burst of yells, a whirl of limbs. Everything is blurred. She prays for those who have so much love to share. But it has been worth the pain. She just wants to live out her dreams and take her mama wherever she is led by Allah, so she is able to heal her body and walk again. She is on the edge of the void, pierced to the heart.

She is “[a]n unpitied exile / Old, [her] grey hair ravaged / With the knife of mourning.”1919xEuripides, 94. The shadows are lengthening, and soon the dark night will engulf all. There is pain in her marrow and bones. Woe rends her bosom apart. She moans, moans, moans and weeps to break her heart.

In her e-mails and text messages, Sebati strives to represent the unrepresentable, the timeless time, and the spaceless space: the death of the mother who in reality had never been there for her. Her suffering is “without present, just as it is without beginning or end; time has radically changed its meaning and its flow.”2020xMaurice Blanchot, The Writing of the Disaster, trans. Ann Smock (Lincoln, NE: University of Nebraska Press, 1995), 15. She is without past or future.

Despite all the words she pours out, despite all her cries, in reply Sebati can only hear silence. “Silence is…a word, a paradoxical word…that…is linked to the cry, the voiceless cry, which breaks with all utterances, which is addressed to no one and which no one receives, the cry that lapses and decries…. [The cry] does not simply come to a halt, reduced to nonsense, yet it does remain outside of sense—a meaning infinitely suspended, decried, decipherable-indecipherable.”21Ibid., 51.

* * *

The stories of Kakima, Sebati, and Askhar, and of Anka, Pimbao, and Dr. Managayam are stories of deep pain, of bravery and heroism, of loss, of loyalty and commitment, of sacrifice, of the imperative to respond to the cries of others, of the impossibility of representing death, of the passivity, the contingency, the uncertainty and the irreducible singularity of suffering, of the black hole from which no meaning can escape but whose structures nevertheless found ethics. They are also stories of the power of testimony, of the “equivocal, puzzling relation between words and voice,” of the rhythm, melody, images, writing, and silence, which speak to us “beyond…words, beyond…melody, like the unique performance of a singing.”2222xShoshana Felman and Dori Laub, Testimony: Crises of Witnessing in Literature, Psychoanalysis and History (New York, NY: Routledge, 1992), 277–8.

When we tell stories of suffering in medical settings we usually concentrate on intractable pain and loss. However, there are many features of suffering that are left out of this kind of account. Suffering is the direct experience of the world as contingent, fluid, uncertain. To suffer the world is to be both active and passive: the two must come together because openness to the world is not merely passive. Suffering does not have inherent meaning but, through opening up new modalities at the edge of experience, it may become a route to knowledge. It is the boundary surface of the human world and that beyond.2323xDerrida, 25ff.

The pain continues and is inextinguishable. Suffering has no beginning and no end. At the end of her story, Hecabe cries softly: “Who would not weep? City lost, children lost, / All lost! Was there ever heard such chorus of pain? / When were such tears shed for a murdered house?” The chorus responds, on behalf of all of us: “In times of sorrow it is a comfort to lament, / To shed tears, and find music that will voice our grief.”2424xEuripides, 110. To this, the somber reply follows, with resignation: “The dead feel nothing; evil that can cause no pain. / But one who falls from happiness to unhappiness / Wanders bewildered in a strange and hostile world.”25Ibid., 111.

* * *

After seven months of suffering, Mrs. Oqil finally died with Sebati and Askhar at her side. When the end came, she had been unconscious for two weeks. Sebati was as devastated as if the death had occurred suddenly, without warning. She lamented her guilt at having slept that night, complained that she had been robbed of precious hours with her mother. She blamed herself for her mother’s death, saying that if she had only given her more or better food, or other medicines, or had been more insistent with the doctors, things might have been different.

Askhar was numbed but reflected quietly. Now that the turmoil was over, he was concerned that some might accuse him and his sister of prolonging their mother’s suffering. “That was not it at all,” he says. He was just doing his duty, even if that duty seemed a little less clear from the present vantage point. He had remained at his post to the end. He spoke softly about the impending change in his life, which might even include marriage.

* * *

The day of the funeral is stiflingly hot. Sebati and Askhar are transfixed and motionless as the body is lowered into the deep grave, and the men set to work with their shovels, turning up clouds of choking dust. When they have finished, Sebati, barely audible, describes the first night without her mother. It has been the darkest, cruelest night of her life. A blackness has come over her world, submerging her, saturating her, covering everything, including all she had known and cared for. Her mother had been a rich jewel in a cruel, barren, harsh world. The grave has been filled, but the eternal hole will always gape. A dead tree gives no shelter, and the dry stone no sound of water.

She finishes by expressing her gratitude to me for the support I have given and asks me to say some words. I thank her, saying how privileged I have been to be able to witness the family’s loyalty and courage and the intensity of their love. When I have finished, I go back to my car, alone, for the drive home, and I weep.