Loss of Humaness. the Ultimate Trauma

The American Journal of Psychoanalysis, 2012, 72, (118–138)© 2012 Association for the Advancement of Psychoanalysis 0002-9548/12

www.palgrave-journals.com/ajp/

LOSS OF HUMANNESS: THE ULTIMATE TRAUMA

Judith L. Alpert

This paper is about chronic illness and its impact on the chronically ill and their loved ones who live through the illness and the eventual death. A new concept is introduced, the concept of “ passing ” : physically ill people may pass as healthy even though they are physically ill. In addition to a discussion about why people choose to pass, two major paradoxes are consid-ered. One concerns the paradox that results from “ passing. ” The paradox is that while the falseness of “ passing ” keeps the self alive, it also deadens it before death. Specifi cally, “ passing ” enables the person with a physical illness to keep his well self alive with others, but results in one feeling dead, disconnected, detached, and inauthentic, before death. The second paradox involves the pressure on the chronically ill person to be heroically agentic in fi ghting the illness and overcoming it and, also, the pressure for this same person to be totally submis-sive and compliant with treatment. While in analytic treatment, the ill person can be helped to access authentic emotions and aliveness and to feel the power of authenticity.

KEY WORDS: chronic illness ; passing ; falseness ; aliveness .

DOI: 10.1057/ajp.2012.8

About 10 days after my husband died, I was on the bus with my then 4-year-old grandson. We were heading back to his house having spent the afternoon looking at the knights exhibit at the Museum of Natural History. It was a lovely day. Conversation fl owed. Knowing I was a psychologist but knowing nothing about what a psychologist did, he asked me. I told him that psychologists helped people with their problems and that they helped them to feel better when they were sad. He thought for a moment. Then he said: Bubbe, I have a problem. Can you help me feel better. I asked him what was making him sad. He said: I feel bad because Zayde is dead.

Judith L. Alpert, Ph.D., Professor, Department of Applied Psychology, New York University (NYU); Co-Director, Trauma & Violence Transdisciplinary Studies Program, New York University; Faculty & Supervisor, New York University Postdoctoral Program in Psychotherapy and Psychoanalysis. Address correspondence to Judith L. Alpert , Ph.D., Kimball Hall, Room 704, Applied Psychology, New York University, New York, NY 10003; e-mail: [email protected] A version of this paper was presented at the Institute of Contemporary Psychoanalysis, Los Angeles, on July 11, 2009.

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Perhaps I should have, but I had not expected that response from him. I started to cry. So did he. There we were in the back of the M10 NYC bus — both of us crying and both of us trying hard to hide the tears. After what seemed like a very long cry, I mustered up calmness and said that I felt better. He said that he did not. I asked him what would make him feel better. His response: If Zayde were alive. And then he corrected himself — No, if Zayde were alive and well.

The paper that follows is about chronic illness and what it does to the chronically ill and to those who love him and live through the illness and the eventual demise. Ben, at age 4, understood that sickness caused havoc, misery, and pain to the chronically ill and this family.

A new concept is introduced, the concept of “ passing ” : physically ill people may pass as healthy even though they are physically ill. In addition to a discussion about why people choose to pass, two major paradoxes are considered. One concerns the paradox that results from “ passing. ” The paradox is that while the falseness of “ passing ” keeps the self alive, it also deadens it before death. Specifi cally, “ passing ” enables the person with a physical illness to keep his well self alive with others, but results in one feeling dead, disconnected, detached, and inauthentic, before death. The second paradox involves the pressure on the chronically ill person to be heroically agentic in fi ghting the illness and overcoming it and, also, the pressure for this same person to be totally submissive and compliant with treatment. While in analytic treatment, the ill person can be helped to access authentic emotion and aliveness and to feel the power of authenticity.

PASSINGS

Before his death in 1990, Anatole Broyard was the New York Times daily book critic and a frequent contributor to the New Yorker Magazine . He was born to a black family in New Orleans in 1920 and spent his child-hood in Bedford-Stuyvesant, an area of Brooklyn, New York, inhabited, at the time, mostly by impoverished Black people. Neither of Broyard ’ s parents had graduated from elementary school.

In his 20s, Broyard “ chose ” to obscure his past. He lived the life of a reinvented white man for almost fi ve decades. He wanted to pass as a white man, and he was able to do so. His light skin and short hair enabled him to pass. Why did he “ choose ” to pass? He wanted to evade categori-zation as “ a black writer ” and, instead, be noticed as “ a writer. ” Did he truly pass? He was married to a white woman. They had children. None of his children knew that he or they were black. So, yes, he passed. Yet,

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while he was passing, he could not keep his own secret. His writing reveals what he was trying to hide as it focused on the act of masking a past and a self.

Passing is not a new concept. There are many stories of passing. These stories exist as nonfi ction and as fi ction, for example, Philip Roth’s (2001) The Human Stain or Henry James ’ (1881) Portrait of a Lady or F. Scott Fitzgerald’s (1925) The Great Gatsby or Theodore Dreiser’s (1925) An American Tragedy .

People who are black may “ choose ” to pass as white. People who are gay may “ choose ” to pass as heterosexual. People who are Jewish may “ choose ” to pass as Protestant, and so on. In general, the term “ passing ” is used to refer to these and similar maskings.

Why was inauthenticity “ chosen ” ? Sometimes people pass, as in the case of illness, because they can. They have an invisible illness and they “ choose ” to pass. Sometimes chronically ill people pass because they have no choice. They have to pass. Others want them to be well and, in fact, demand it. They do not want to know about illness. People pass because they know race, religion, illness, and homosexuality have consequence and results in intolerance.

There is a paradox contained in the very word “ choice ” ; it signifi es a narrowed band of agency, in which one ’ s personal activity is inherently constricted by personal and cultural predicaments. I use the word “ choose ” in quotes. I do this to convey that people do not really have a choice. Choice implies some power of choosing as well as options or alternatives. However, here choice is limited; for a homosexual, for example, being “ out ” may result in harsh consequences.

Consider World War II. Those who completed forms indicating they were “ negro ” were assigned to all “ negro ” units and their labor assignment involved serving whites, digging latrines, and doing hard manual labor. Without question, checking the “ negro ” box on the enlistment form resulted in lower status and segregation. Whites usually had it better as they served as combat soldiers or offi cers in charge of white units. Given this, it is not surprising that some light-skinned black men entering the military identifi ed themselves as “ white ” and, after the war, continued to identify themselves that way. They married white spouses and separated from their black fami-lies. Often the black families who were disowned in this way would say that their relatives had “ passed ” or were “ lost to all their people. ” The black families protected their newly “ white ” relatives by feigning to be their servants when they visited their homes or by ignoring them on the street. For them, “ passing ” was a ticket out of discrimination.

Passing here could be seen as a healthy force. It could be seen as a recognition of the need to accommodate to cultural prejudice. It could be


seen as an acknowledgment of a means to attain physical and economic refuge. In his discussion of faking it Goldman (2007) , makes a related point. He requests a more approving view of the “ varieties of faking it ” (p. 18). His appreciation, however, trails from his belief that authenticity is a form of self-delusion.

This is a very complex issue. While “ passing ” could be seen as a healthy solution, it could also be seen as creating new confl icts and symptoms that are products of the adaptation that culture induces. This is a position devel-oped by several psychoanalysts who are social theorists (e.g., Altman, 2005 ), as indicated by Grand (2007) . The signifi cant point here is that cultural prejudices and cultural repercussions are real and, in addition, internalized.

In addition to these “ passings, ” I would like to explore physically ill people passing. “ Passing ” here does not mean “ dying. ” I am referring to people passing as physically healthy when they are physically ill. While other psychoanalysts have written about passing or faking it in some way, (e.g., Grand, 2000 ; Goldman, 2007 ), there is nothing in our literature on the topic of passing as physically healthy when one is physically ill. This is surprising as the phenomenon of passing I am describing seems to be relatively common.

At the outset I want to make clear that that there are many illnesses. With some, one gets better while that is not the case with others. There are long-term illnesses and short-term illnesses. And there are illnesses that cause more or less physical pain. There are even illnesses that are in the “ get better ” category, and the person, despite categorization, does not get well. There are invisible illnesses and highly visible ones. Some begin as visible. Others only become visible over time. And so on. I speak about individuals passing in all of these categories.

My interest in illness was stimulated by my late husband ’ s experience with a rare neurodegenerative disease for which there is no known cure. I have learned about illness from living alongside his horrifi c disease for 12 years. In addition, I have treated many well spouses of the physically ill as well as some people with physical illness. In what follows, I make use of these experiences. Also, I make use of different types of illness narra-tives. Some are written in the third person and are fi ctional stories such as Eric-Emmanuel Schmitt’s Oscar and the Lady in Pink (2003). Others are fi rst-person nonfi ctional narratives (e.g., refer to Lang, 2004 ; Bauby, 1997 ; Murphy, 1990 ).

Two major paradoxes will be considered. One concerns the paradox that results from passing. Passing enables the person with a physical illness to keep his well self alive with others. By passing, the ill person is treated and seen as healthy or, at least, not sick. Also, he has some power as a

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“ passer. ” To some extent, the ill person who has little or no control over his illness can at least control how he is seen. However, while passing keeps the self alive, at the same time, it makes it dead before death. It results in one feeling dead, disconnected, detached, and inauthentic. Passing is at once agentic and life-affi rming and, also, isolating and false. When one is passing, relationships are dishonest. Passing is simply a para-doxical form of retrieving agency. This is the paradox: The falseness keeps the self alive and makes it dead before death.

And there is another, related paradox, which involves the pressure on the chronically ill person to be heroically agentic in fi ghting the illness and overcoming it and, also, the pressure for this same person to be totally submissive and compliant with treatment. An impossible double bind, involving agency, is imposed on the patient.

WHY PHYSICALLY ILL PEOPLE “ CHOOSE ” TO PASS

Passing is not necessarily something that is done consistently. A physically ill person may go in and out of passing in any one day. He may go to work and pass as healthy at the offi ce. He may lunch with a friend who “ knows. ” When he returns to the offi ce after lunch, he may again pass as healthy. There may even be people at work who know that he is physically ill and who talk to him about his illness during the work day. At the end of the day, at his doctor ’ s appointment, for example, he presents as one with a physical illness. The masquerade oscillates. The invisibility of some illnesses enables physically ill people to pass as healthy. At different stages of their illness, they may pass more or less. Even those who look sick and cannot hide their illnesses by means of wigs or prosthesis may pass.

Mary provides an example. The high-powered attorney who is a partner in a large law fi rm has non-Hodgkin ’ s lymphoma. While she has no symp-toms, she has painless swollen nodes that are diagnostic. As the disease progresses, more nodes appear and they reveal in such places as the bone marrow. If untreated, death will result. Originally, it was believed to be an aggressive cancer. She vomited profusely, and could not walk. She thought she was dying. Recovery from chemotherapy was slow and lasted 4 months. When well, she was determined to never be helpless and sick again. She did more than pass. She became the epitome of apparent health. While never before athletic, she became a tri-athlete and the recipient of numerous trophies and applause. Only a few friends and family members knew of her bravery and of her ordeal. Over time, she got better and needed less frequent CAT scans. She believed she was cured. Then, her internist discov-ered an enlarged spleen. Still, she was asymptomatic and did not experience fevers or fatigue. While she had struggled to pass earlier, this time she


could easily pass. She was treated with a number of non-FDA-approved drugs, and once every year, would have four rounds of maintenance treat-ment. The treatments resulted in her feeling sick and weak. Nevertheless, she was still able to pass.

Mary is single. She is a lawyer. She chooses to pass because she wants to meet a life-time partner and knows that she would not achieve this status if potential partners knew about her illness. Also, she is sure her clients would leave and that there would be no new referrals if people knew. She is convinced that some friends and colleagues would shun her as well. Cancer phobia abounds even today, she told me. While she hates the lying, hiding, and faking that is a part of her life as a “ passer, ” she feels and is treated as a well person. She knows herself as a well person. Even when she feels sick, she knows herself as a well person. She is not ready to take on an identity as ill, and, so far, she does not have to.

Sometimes people choose to pass for as long as they can because they do not want to lose jobs, incomes, referrals, or clients. Another conse-quence of physical illness is dismissal. The physically ill may be eliminated from, for example, social circles, invitations, referral lists, and inheritance. They may no longer be seen as people you can argue with, depend on, or treat as equal. The list of topics that cannot be discussed with the physically ill may grow.

When my husband ’ s illness became known, people began to treat him differently. As soon as Gordon left to go to the bathroom when out for dinner with friends, invariably friends would ask me how he was doing. I would encourage them to ask him. They never would. In time, I learned to say to Gordon, in front of our friends, that they wanted to know how he was doing. People, even those who are psychologically sophisticated and extremely well-intentioned, seem to have trouble talking about illness to the person with a disease.

Sometimes people pass because others demand that they do. In addition to passing as healthy when physically ill, they may pass as less burdened than they, in fact, are. People may say what they think others want to hear. In response to a question about his health, Lang (2004) , who was suffering from Crohn ’ s disease, recorded in his illness memoir:

“ It was hard at fi rst, but after awhile you get used to it. It ’ s not so bad anymore . ” He smiled at me, and nodded. “ I ’ m sure that ’ s what you tell people Jim, but I know that ’ s not really true. ” I was momentarily taken aback at his response, but then recollected that he had spent the last year or two caring for his dying wife. “ You ’ re right, ” I said. “ But that ’ s what I tell people. ” (p. 127)

Those in the ill person ’ s world may drive the passing. A surgeon ’ s nurse demands that a woman wear a prosthesis following surgery for breast

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cancer. When questioned, the nurse reveals the reason she advocates for prosthesis: to elevate the spirits of people in the doctor ’ s offi ce ( Rimmon-Kenan, 2002 ).

Illness bears similarity to the trauma of physical abuse. Both involve assault on the body. Both involve betrayal. While the betrayer of physical abuse is usually a parent, the person with a physical illness may feel betrayed by a higher power, a parent, or by oneself. Often with physical abuse there is powerlessness, inescapability, and disruption. Illness leads to these as well. The abused child may be told to pretend the abuse did not happen. The person with a wounded body is similarly “ told ” to wear wigs or other disguises and to feign wellness.

Sometimes people choose to pass because they can. Their illness is invisible and passing allows them to live longer as a seemingly healthy person and to be related to as such. Also, it may be too hard to stay with the illness. One may need to escape from illness, and passing allows this. Illness is the process of coming to realize that one does not know oneself. The physically ill person may feel that he is a stranger to himself, and is not connected to his former self. When there is illness, one holds two irreconcilable representations of self: a more or less intact self and a more or less marred self. There is a discontinuity in identity leading some to talk about who they were and no longer are.

Murphy, an anthrop ology professor at Columbia University who devel-oped a tumor of the spinal cord, which resulted in quadriplegia, writes: “ I was not simply confronting an unpleasant two or three weeks in the hospital, but a new way of life, a career of being sick ” (1990, p. 19). Later he writes:

I had an increasing apprehension that I had lost much more than the full use of my legs. I had lost a part of myself. It was not just that people acted differently toward me, which they did, but rather that I felt differently toward myself. I had changed in my own mind, in my self-image, and in the basic conditions of my existence. (Murphy, 1990, p. 85)

When ill, there is talk of body parts as if they are separate from themselves. It is as if, in that moment, they are looking at some part of themselves as belonging in the after while they are in the before. The lived past and the ongoing present are different. They feel as if they have lost part of them-selves or, perhaps, their whole selves. Linearity appears to be gone. There is only polarization, disruption, and break. They return to the past by passing.

Even when one can no longer pass with others, the physically ill may choose to pass to himself. He can do so by daydreaming or dreaming about being his former healthy self. As an example: a man with Lou Gehrig ’ s


disease spent about 15 minutes every morning imagining that he was in a healthy body. The image enabled a reprieve from the harsh reality of wheel-chairs, catheters, medication, aides, doctor ’ s appointments, and so on. The fantasies served as a bridge from the healthy known to the harsh reality of illness.

This is the paradox: The falseness keeps the self alive and makes it dead before death. Stated differently, while passing keeps the self alive, it results in one feeling dead, disconnected, detached, and inauthentic. Passing is agentic and life-affi rming; it is also isolating and false. Passing enables the person who is physically ill to keep his well self alive with others. By passing as healthy when he is physically ill, he is treated and seen as able-bodied. While he has little or no control over his infi rmity, by passing, he has some control over how he is seen by others.

DOUBLE BIND PLACED ON THE CHRONICALLY ILL

There is another paradox: the pressure for the person with an illness to be heroically agentic in fi ghting the illness and overcoming it, and, also, the pressure for the sick person to be totally submissive and compliant with treatment.

There may be a demand that the person with poor health outwit his illness by spirit, courage, and never-ending energy. Stories of people with illness are bursting with heroic coping accounts. There is little tolerance for “ sissy ” behavior in this terrifying roller-coaster ride of sickness. Those watching the weakening, call on the infi rm to display acts of bravery and gallantry. Perhaps the ill demand this response of themselves. To not comply could result in more loss and failure.

There are many examples of individuals with illness faced with pluck and daring. Walter rode his mechanical wheelchair from New York City to Washington, D.C. in his effort to raise money for his Lou Gehrig ’ s disease. At the onset of disease, Meryl, who had non-Hodgkin ’ s lymphoma retired from the practice of law but not from vigorous living. She directed her energies toward learning about and infl uencing the science and politics of her disease. She testifi ed on Capitol Hill about and raised money for research on her disease. Tour de France winner and cancer survivor Lance Armstrong, who became a cancer activist, provides another example.

Even 10-year-old Oscar had to die wise. Before he died, he wrote to God:

I tried to explain to my parents that life is quite a gift. At fi rst you overestimate it, this gift: you think you ’ ve received eternal life. Then you underestimate it, you think it stinks, it ’ s too short, and you ’ re almost ready to throw it away. Finally, you realize that it wasn ’ t a gift at all, just a loan. Then you try to deserve it. (Schmitt, 2003, p. 115)

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When we hear these stories, we applaud. Wonderment often follows. Are these daring folk responding to a cultural imperative? Is this their way of staying in life and maintaining control? There are benefi ts to this courage. There may be costs as well. What will happen when the disease overwhelms and they can no longer engage in these acts of heroism and confrontation?

In addition to the pressure for the person with chronic illness to be heroically agentic in fi ghting the illness and overcoming it, there is also pressure for him to be totally submissive and compliant with treatment. This is an impossible double bind involving agency which is imposed on the person with a physical illness. The demand for heroism in fi ghting the illness and the disempowering demand for submission in dealing with it co-exist.

Several papers on sickness as a social role (e.g., Parsons, 1958 ) indicate that a new responsibility replaces obligations attached to all former roles. The new responsibility is to get well, and submissiveness is the suitable part that must be performed. The anthropologist, who developed a tumor of the spinal chord that gradually progressed to quadriplegia, wrote a narra-tive of his paralysis experience. He writes:

As with all social roles, a person can succeed or fail at sickness. A key rule for being a successful sick person is: Don ’ t complain! The person who smiles and jokes while in obvious physical misery is honored by all. Doctors and nurses are especially appreciative of this kind of patient, for he usually follows orders and seldom fi les malpractice suits. Hospital visitors also value cheeriness, and the sick person soon fi nds that he is expected to amuse them, and thus relieve their guilt at being well. (Murphy, 1990, p. 20)

The chronically ill is expected to normalize himself by “ passing ” or outwit-ting, or plucking or “ heroic-ing. ” It is simply too horrible for others to see one so close to the inevitable, which is death. Thus, there is a demand to play games, and the games are: the “ I feel good game ” ; “ This is not big deal game ” ; “ I can lick this thing game, ” and so on. Without question, the chronically ill are duty-bound to assume a false self. This is because the ill state provokes the death anxiety in the seemingly well. Death anxiety and the exigency to deny death results in cultural dissociative splits and prejudices, which are foisted on others in order to resolve the gargantuan dread of demise.

LOSS OF HUMANNESS

Until recently, the role of death received relatively little attention in the psychoanalytic literature. Nevertheless, traumatic loss has received some attention. Stolorow (2008) , for example, combines a brave stance


and a philosophical approach in his effort to integrate traumatic loss with deep knowledge. K ü bler-Ross (1969) , a true “ Christina ” Columbus in the world of death and dying, clarifi es how imminent death impacts the patient, the healthcare professionals involved with the patient, and the patient ’ s family. Acknowledging the powerful fear of death and recognizing that the impulse is to withdraw from the dying, she advises how to draw closer.

Other cultures, such as the Chinese, Japanese, and the Muslim cultures of the world, are less afraid of weakness, surrender, or fatality than American culture. Some Palestinians, for example, choose death over life. While their reasons for doing so are related to the promised grand afterlife, the point is that they are willing to leave life as they know it. The Japanese, who honor the elderly, seem less afraid to acknowledge decay, disintegration, and the fragility of life. For example, Hellman (2007) writes:

Shunning plum blossoms, which can persevere for several weeks, every spring the usually punctilious Japanese declare a business holiday to celebrate cherry blossoms, which peak and disintegrate in three days in the eternal procession of nature. Blooms decay as old women do, but for the Japanese, human feelings in this exercise are not the focus as much as the interminable pageant that is impersonal nature. (p. 441)

The American way, in contrast, is to deny, repress or, somehow, creatively forget about the fragility of life. Americans do so as long as they can. Consider this: In The Diving Bell and The Butterfl y (1997) , Jean-Dominique Bauby, who had “ Locked-in Syndrome, ” a condition in which a patient is aware and awake but cannot move or communicate due to paralysis of nearly all voluntary muscles in the body, provides an extreme example of dismissal. He writes:

At the Caf é de Flore, one of those base camps of Parisian snobbery that sends up rumors like fl ight of carrier pigeons, some close friends of mine overheard a conversation at the next table. The gossipers were as greedy as vultures who have just discovered a disemboweled antelope. “ Did you know that Bauby is now a total vegetable? ” said one. “ Yes, I heard. A complete vegetable, ” came the reply. The word “ vegetable ” must have tasted sweet on the know-it-all ’ s tongue, for it came up several times between mouthfuls of Welsh rarebit. The tone of voice left no doubt that henceforth I belonged to the vegetable stall and not to the human race. (p. 83)

By making Bauby a “ total vegetable ” and a “ nonmember of the human race, ” they are distancing themselves from Bauby and from death. It is as if they are saying: He is not like us. This will never happen to us. We will not die.

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It is traumatic to face almost defi nite and unexpected death. Kohut (1984) says it well: “ What is feared is not physical extinction but loss of human-ness: a psychological death in which our humanness would permanently come to an end ” (p. 16).

Many different terms are used to describe the anxiety associated with death. Annihilation anxiety is sometimes used to refer to imminent or upcoming destruction and can result from adult onset psychic trauma ( Hurvich, 1991 ). Death anxiety usually refers to a more distant but inevi-table event. Regardless of the term used, there seems to be agreement that confrontation with the inevitability of death defi nes all future life.

The thought of our own death terrifi es us. In fact, it drives us crazy. We only want to go where we have been. As Ogden (1983) puts it: “ We are incapable of both maintaining our sanity and genuinely experiencing our own mortality ” (p. 18). We never think we will die. When we fi rst learn about death, we think that others will die. Later we come to know that our parents could die. But we never think we will die. Mostly, we only learn this when we face death.

Hellman (2007) , who had a “ little cancer, ” was permanently changed by her facing death. Listen to Hellman:

I fear you will taunt me, that you know all this. I thought I did too, but I know now that I knew only about it. I know it now, at least a little. I knew you would die. Not me. (p. 443)

And in describing her reaction to the cancer diagnosis she states:

In the beginning is fear. The terror that seized me was provoked by the cancer diagnosis, but what I felt was primordial. I fi nally understood the picture of Mrs. Kennedy on all fours like a rodent crawling away from the back of the car where her husband was shot and dying. (p. 446)

There is a dialectic between the sense of being and the anticipation of nonbeing. It could be said that we are aware of only one or the other at any one time and, mostly, we have only consciously been aware of the sense of being. To do otherwise, to deal with mortality, is simply too much.

We deny death. Becker (1973) acknowledges that it is impossible for humans to sustain an awareness of or full comprehension of their own mortality. He identifi es the primary repression as fear of death rather than fear of sexuality. According to him, we develop character defenses that keep us from facing death and, at the same time, from living life to its fullest.

It involves a certain mystifi cation: How we can live with the knowledge of our death and fully enjoy life, without going crazy? While we deny death as much as we can, a life-threatening event can shove death in our faces.


The denial of death is powerful and acknowledgment of its actuality drives us “ crazy. ”

In referring to collisions between expectation and actuality and the complex negotiation that it often precipitates, Slochower (2006) explains the human need to seize feelings of anticipation, hope, future, and perma-nence. In our snatch, we bar markedly unsettling dimensions of experience. That we will one day no longer exist is one of those experiences that we need to wipe out. And when those elements re-enter our consciousness, as it does with the chronically ill, there is no choice but to confront and then negotiate the collision that ensures.

Those who have contact with the chronically ill and are seemingly well, in general, do not want to be reminded of vulnerability and inevitable demise. In turn, the demand placed on the chronically ill is to control, hide, and overcome the chronic illness. This, of course, is an impossible act. It leads to passing.

It is understandable that the person with a chronic illness heroically struggles to overcome the illness. It is understandable that the person with a chronic illness complies with the demands to appear cheerful, to act “ well, ” and to present as undefeated and unfl appable. He does it for himself, and he does it for others.

The seemingly well can continue to deny that someday they will lose their humanness. The seemingly well know and do not know that they will someday die. It is true: “ We all hover at different distances between knowing and not knowing about trauma, caught between the compulsion to complete the process of knowing and the inability or fear of doing so ” ( Laub and Auerhahn, 1993, p. 288 ).

Doctors want to deny death too. Acknowledgment of its actuality drives us and them crazy. Doctors may dismiss the chronically ill person or his illness. They may demand that the ill person appear cheerful and heroically overcome the illness. Once again, the chronically ill person is asked to participate in the theater of pretending. The chronically ill must protect the seemingly well, including doctors, from the unbearable knowledge that we are going to die, all of us, someday. In their medical reports, for example, doctors dismiss the physically ill patient. The patient, no longer a person, becomes a heart or a lung or some other disease. The central character in the medical narrative is the illness and the experience of the patient is often silenced.

Early on, Freud recognized that doctors do not engage with the patient ’ s feelings. He wrote in 1912:

I cannot advise my colleagues too urgently to model themselves during psycho-analytic treatment on the surgeon, who puts aside all his feelings, even his human sympathy, and concentrates his mental forces on the single aim of perform ing the operation as skillfully as possible. (p. 114)

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At her request, Laura Rothenberg’s (2003) doctor writes in Laura ’ s book:

How much did your transplant affect me? I am not so sure I can truly say. I try not to spend that much time thinking about it. When one works with children who may die, one sometimes puts that out of one ’ s mind. It makes it impossible to be yourself and inhibits personal connections with the individual children. The problem between you and me is that we ’ ve crossed too many lines. I pride myself on my ability to maintain boundaries, because without them I am unable successfully to do the work I love. However, I must protect myself. I tell myself these are not my children and yet in order to gain each child ’ s trust, I must give of myself. (pp. 196 – 197)

Sometimes illness is acceptable only when it is overcome. When there can be no promise of cure or assumption of a happy, fairy-tale ending, sometimes even medical doctors desert. They, too, may demand cure and refuse to bear witness to the fi nal reality. Jane Brody quoted a letter in The New York Times (August 10, 2004, Health section), which was written to the doctor of the deceased by her husband:

As you know, my wife was diagnosed with lung cancer in 1997 and was treated successfully by you for almost seven years. During that time, she developed a relationship of confi dence with you which, given her many unhappy past expe-riences with doctors, was both encouraging and surprising.

And yet, at the end, to her (and my) profound disappointment, you failed her. When you realized that you could do no more to reverse her progressive disease and that death had become inevitable, you abandoned her. You evaded her telephone calls; you waited 10 days before informing her of the April 2004 CAT scan results; you pulled away. The empathy you displayed was replaced by what she experienced as indifference.

After describing her husband and his interest and abilities, Groch , in The New York Times (July 6, 2004), writes: “ Most of all, Bill never understood why all these nice doctors didn ’ t have a few minutes to talk to him ” (p. F5).

Doctors are taught to save lives. When they cannot, they withdraw. For doctors it seems to be simple equivalence: a patient dying equals a doctor failing. And there is a sequence that doctors face, and they face it because they are human. The sequence: death leads to their confronting their own eventual and inevitable death. They must face their own vulnerability. Is it any wonder then that doctors may go to extreme measures, which are not necessarily good for the patient, in order to keep the patient alive? Is it any wonder why a doctor will go to extreme measures to avoid a dying patient?

My husband, Gordon, saw many doctors. He reported that, after he was diagnosed with his incurable disease, no one seemed to want to take him


on as a patient, even though he took his medication as directed, kept appointments, and was a most congenial patient.

Even 10-year-old Oscar knew that doctors were uneasy about illness. Oscar told his doctor:

Stop looking so guilty. It ’ s not your fault that you ’ re forced to give bad news to people, diseases with Latin names, and recuperation that won ’ t happen. You should relax. Loosen up. You ’ re not the one who orders nature around. You ’ re just the repairman. (Schmitt, 2003, p. 111)

Listen to Oscar ( Schmitt, 2003 ): “ My illness is part of me. They don ’ t have to act differently because I ’ m sick. Or can they only love an Oscar who ’ s healthy? ” (p. 104). Later 10-year-old Oscar told the hospital volunteer ( Schmitt, 2003 ): “ They ’ re afraid of me. They don ’ t dare talk to me. And the less they dare, the more I feel like a monster. Why do I scare them so? Am I that ugly? Do I stink? Have I grown into an idiot without knowing it? ” Mamie-Rose, the Lady in Pink, explains to him: “ They ’ re not afraid of you Oscar. They ’ re afraid of your illness ” (p. 104).

Hospitals may also desert the dying patient. One woman told of how a prominent hospital specializing in cancer does not receive patients for triage purposes. In emergencies, patients are told to call 911 or to report to a local hospital.

When one acknowledges a chronic disease, one confronts death. When confronted with either one ’ s own death or that of someone close, there is overwhelming terror. The danger is inescapable. The experience is helpless-ness. The result can be soul murder ( Shengold, 1989 ). Illness evokes death anxiety in others. People want the chronically ill person to help them to resolve their death anxiety by not appearing ill. Doctors are human.

PASSING AND SIGNIFICANT OTHERS

Jack and Jill went up the hill To fetch a pail of water. Jack fell down and broke his crown, And Jill came tumbling after.

Jack and Jill nursery rhyme (Obscure origin)

The Jack and Jill children ’ s rhyme is relevant here. It points out that the falling of one has consequence for the other. In the present context, it points to the widening circle of dissociation, fragmentation, inauthenticity, isolation, and deadness.

The experimental treatment given to 62-year-old Sam led to a 1-year remission. Sam had prostate cancer, which had metastasized to his lungs and bones. While his wife, sons, and sister knew about his illness and the

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gloomy prognosis, he did not want others to know. He wanted to continue to work and to lead a full life. He wanted to be treated as a healthy person. Thus, he chose to pass. Even after his remission, when he looked visibly ill and the cancer had spread to the bones in his upper body causing his upper frame to bend over, he opted to pass. Inquiries into his health were many, given his devastating outer shell. However, he had a cover story and he smoothed away the voices of concern by declaring that he had spinal disc problems.

While he was a prosperous business man and did not need to work for fi nancial reasons, he wanted to work. His choice to pass burdened his wife, sons, and sister as he asked them to maintain his cover with concerned friends and other family members. While they yearned for the support from friends and family, it was not available to them. It is not simply the phys-ically ill person who deals with the impact of passing. The families of those who pass and their families who know are also impacted. His partner or others who are privy to information about the illness may have to pass in order to keep the secret. They may hide their burdens and pass as one who does not live with a physically ill partner.

There are many ways that the partners of the physically ill pass. They may have to be partners to the secrecy and deception as indicated above. They pass, lie, hide, mask, and fake in order to enable their partners to pass as physically healthy. And they may pass by minimizing. They may hide their burdens and pass as someone whose load is much less than it is. They may do so to protect their spouse. They may even do so as a doomed-to-failure effort to protect themselves.

Joyce, the mother of three children under age 6, was 39 when her husband developed ALS (Amyotrophic Lateral Sclerosis). As she was deter-mined to have her children lead as normal a life as possible, she picked up many responsibilities related to her husband ’ s care rather than having aides and nurses intruding. Not surprisingly, she was exhausted and over-whelmed. She did not want to burden anyone, including her husband, with her concerns. She chose, instead, to pass to him and to others as one who could easily handle this monstrous burden. She was able to pass as someone who was in charge and unburdened. However, there were consequences. As she put it: “ I lost the we of us and I lost the me of me. ”

Gordon, my late husband, had a very rare neurodegenerative disease for which there is no treatment and no known cure. It affected the central, peripheral, and autonomic nervous systems. He “ lived ” for 12 years after he was diagnosed. I put the word “ living ” in quotes because the word does not capture his experience, especially over his last few years.

Walking always gave him great pleasure. When he could no longer walk, a wheelchair entered his life. Reading always gave him great pleasure.


When double vision entered his life, reading was lost. Food was another great pleasure. Over time there was little that did not lead to choking. Even water could result in a powerful upsurge. And everything was slow and long; movements were slow; thoughts were deliberate; speech was meas-ured; the wait in the doctor ’ s offi ce was long; the delay for the ambulance was extensive; the wait for the police to pick him up when he had fallen from his wheelchair was lengthy. Despite all these limitations, Gordon believed he had a great deal to live for. He loved his grandchildren, his son-in-law, his daughter, and me. He wanted to live. There were no “ do not resuscitate ” papers signed by him. If all he could do was blink one eye, he voted for life.

He lived for 12 years after he was diagnosed. Our lives were fi lled with wheelchairs; additional chest straps to hold his torso erect while strapped in his wheelchair; a mini-bus with ramps, which we called “ the magic bus ” ; prisms to minimize double vision; pills, pills, and more pills — about 60 a day; catheters; aides; choking, even from sipping water; doctor ’ s appointments, almost daily; only restaurants with handicapped bath-rooms — and not all handicapped bathrooms satisfi ed his level of disability; ambulances; police to pick him up when he fell; hospitals, and pain, pain, and more pain.

Over time there were fewer and fewer activities in which he could engage. There were friends ’ houses he could not enter as they were not wheelchair accessible. There were restaurants, theaters, and events that were inaccessible to him, and so on. His life became more and more limited and as his did, so did mine. Pleasures decreased, locations became inac-cessible, activities became limited. I write all this, not so that the reader feel sorry for this man whose professional work life ended at age 49 and whose last breath was taken at age 61, but in order to create a context for what preceded and what followed.

I remember when I wrote the fi rst version of this paper. At the time, my late husband was still alive, although deeply ill. Imagine my state at the time. While my husband was still alive, there were many times he almost died and many times I saved his life. I was overwhelmed by his human vulnerability and his bodily compliance with unspeakable indignities, intru-sions, and atrocities. I presented a fi rst draft of this paper to my study group. With great care, they told me that the paper did not make sense. I knew that. I was trying to communicate my experience, which dictated a narra-tive of confusion, disorientation, horror, and shock. I was trying to commu-nicate what happens when trauma strikes, which is the fading of logical thought.

Let me add that I never experienced confusion while working. In fact, I did some of my best work with patients and students during this period.

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They allowed me to vacation from the wheelchairs, aides, and pills that had intruded our lives. The stories and questions of both patients and students demanded that I be present and clear. Their issues engaged me emotionally and intellectually. They seemed more real than the unreality that existed just one fl oor above, in my apartment, where my husband endured. When I worked, I forgot about his illness. I forgot about him. My mind was clear. But the confusion, disorientation, and bewilderment always returned, when my work was done.

Members in my group convinced me that there were other ways of telling or other times to tell if I could not create a coherent story at that time. I knew that my colleagues were well-intentioned. I also knew that they were human. I could not help wondering if they or anyone really wanted to know the extent of havoc Gordon ’ s diabolical disease had caused.

By means of this story, I wish to make two related points. One is that the disease may cause confusion, disorientation, and bewilderment not only in the physically ill but also in his family. Second, it may be too much for the family and too much for others, including doctors and friends.

Without question, families are impacted when chronic illness smacks. It also alters family dynamics. There are some loving families who become even closer with illness such as what seemed to be the case with the family of actor Christopher Reeve of Superman fame, who became a quadriplegic after he was thrown from a horse. In fact, there are many examples of families bravely facing the diffi culties of illness and death together. However, there are other families who engage in what, at fi rst glance, may seem like inexplicable behavior. For example, family members may pass as nonfamily members. They may do this by disownership. I hesitate to use the following examples because they are so idiosyncratic. However, what I have found is that many illnesses lead to unique responses by family members. In some situations, illness brings out and magnifi es existing pathology. The following are examples of this.

When Maureen ’ s husband found out that she had non-Hodgkin ’ s lymphoma, for several months he tolerated his wife ’ s illness and the diffi -cult aftermath of the treatments. When he realized that the recovery was slow and perhaps never-ending, he passed as a nonfamily member. He did this by leaving and, later, divorcing her.

Another extreme example: A physically ill man and his family were disinherited. The reasoning was that he was ill, and therefore he would be of no use to his aging mother. This man could not continue to relate to the narcissistic mother who, upon his being diagnosed, treated him like a non-son. He then did what she unconsciously planned; he freed her from being there for him while he lived as an ill person. The story continues. The adult man ’ s only sibling could have stepped forward and protected his


ill brother. However, he was in line to profi t from his brother ’ s disinherit-ance. The well sibling chose to steal. He used a sophisticated technique for his theft, and it was silence. He joined his mother in the abandonment of the sick man. He, too, chose to see no illness, hear no illness, and speak no illness. He chose to live as the only (and wealthy) son of the mother.

TRAUMA, DISSOCIATION, PASSING, AND THE SPLITTING OF THE SELF

Life-threatening illness happens. It happens to adults and it happens to children. When it happens, it is usually traumatic. It is traumatic to those affl icted and to those close to them. When the trauma of illness occurs in childhood, new self-states arise, contain the trauma, and protect the other self-states from its intrusion. As the childhood self is not fully formed, the trauma memories can be isolated in dissociative states. The self-states of trauma exist, but only in some parts of the personality where they are not owned or experienced.

Traditionally, psychoanalysts retreated from the possibility that late onset trauma could have enduring effects, but we know better now. The trauma-tized adults are overwhelmed by facets of the internal experience that remain unspoken. Adults surrender to the trauma. They have no choice. Homeostasis is jeopardized.

In contrast to children, adults have an observing ego that adds to their knowledge of the threatening traumatic danger ( Krystal, 1985 ; Boulanger, 2007 ). Since the self is already formed, the trauma impacts on the entire personality. There is no “ not me ” self-state in which to contain the trauma. The adult ego has collapsed and cannot be pulled together as before. The core self is battered by catastrophic dissociation. It is everywhere or, as Herman states (1992): “ Repeated trauma in childhood is believed to form and reform the personality whereas, with adults, it erodes the personality already formed ” (p. 96). Thus, the adult self, when faced with the over-whelming terror of annihilation, recognizes the horror and its concomitant danger and loses the capacity to refl ect on what is happening. The impact may be denied but the event is known.

The adult, who is terror stricken, “ loses it. ” The person buckles, so to speak. It is as if she is between two deaths ( Lacan, 1977 ), the biological death and the symbol for death. This in-between space is an emptiness of sorts, which cannot be controlled or enclosed, or logically explained. It is a space that places one away from the rest of human race and in new and unfamiliar territory. They are not dead, and yet they no longer live.

The perception of self is lost. It is as if a new self has been created at the “ annihilation dressmakers ” ; one is barely recognizable to oneself. Agency is no longer as it was, cognition is no longer as it was. Range of

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affect, sense of time, and bodily intactness have all been compromised. One ’ s object world is lost; it is replaced by limitation where few are author-ized to enter. One ’ s capacity for self-refl ection also has a stand-in. This time, concreteness is the proxy and the capacity to dream, to fantasize, and to think productively is compromised. As Krystal (1985) states, there is surrender . Shengold (1989) has a different term: soul murder .

Thus, child-onset trauma and adult-onset trauma take different paths. When a child is confronted with either one ’ s own death or that of someone close, it becomes part of self-experience. It exists in a self-state, which contains the trauma and protects the other self-states from its intrusion. In contrast, when an adult is confronted with either one ’ s own death or that of someone close, the trauma erodes the personality already formed, and the self collapses.

Originally, I conceptualized passing as an early stage in the illness life-span ( Alpert, 2007 ), but I see it differently now. Passing may be a steady aspect rather than a stage in the chronic illness process. And while many may be involved in passing, the passing may be demanded by many. Once a diagnosis of chronic illness is swallowed, life is divided into the life before and the life after . Passing may continue throughout the after. Right through the illness, the chronically ill pass as less sick than is the case in order to alleviate the annihilation anxiety of the seemingly well. The demand is great to do this. Also, the chronically ill pass as less sick in order to mini-mize burden on loved ones. Those close to the chronically ill may not want to burden the chronically ill; they, too, may take part in the conspiracy. Chronically ill passers interact with seemingly healthy passers in this round of illness.

I do not mean to imply that there is dishonesty, although sometimes there may be. Rather, there is just effort to protect loved ones and seem-ingly healthy others from the just-too-horrifi c reality of death. Also, in part, the masking enables the chronically ill to dupe himself, at least for a moment, until the physical pain becomes too great and faking it becomes impossible.

Illness is the process of coming to realize that one does not know oneself. The physically ill person may feel that he is a stranger to himself, and is not connected to his former self, and the previous sense of self-continuity is lost. There is a pre-illness knowledge of the self and a post-illness knowl-edge of the self. There is a before me and an after me . This is what happens when there is trauma. The pre-trauma self is lost and there is disconnection. The person holds two irreconcilable representations of self: a more or less intact self and a more or less damaged self. There is a discontinuity in identity leading some to talk about who they were and no longer are. One loses oneself in many ways: by loss of self-continuity and by passings,


which involve presenting an image that may foster an alienation, of sorts, from oneself. Passing, however, has its place. Movement between passing and not passing is inevitable as a comeback to the condition of being human. As Grand (2007) states in a discussion of a related topic: “ Fakery will persist as a problematic adaptation that deadens one aspect of living while igniting another ” (p. 42).

Contemporary psychoanalytic thinking conceptualizes the self as being divided among multiple islands of relational experience and dissociative states and, in the healthy individual, the islands are held whole by the mental facility to bridge paradox ( Bromberg, 1993 ).

Stay with the islands. As I see it, illness is like a tsunami. When the wave of illness hits, all the self islands are submerged by the wave . When the wave is titanic and prevailing, all the selves run from the wave. One is running toward the other side of the island, and when halfway across, the approaching water is in front and water surrounds. The waves meet and a self goes under. In fact, many selves may go under. These islands of selves disappear from psychic view . In time they re-appear, battered and badly bruised. Illness creates a whole new self-typology and leads to the work of negotiating a newly developed and developing landscape.

People with chronic illnesses are hugely challenged to be authentic. Too often it is not safe, it will not be allowed. However, while in treatment they can be helped to access authentic emotion and aliveness and to feel the power of authenticity. But there is a challenge for the analyst. Illness is chilling and therapists are not immune to the terror of illness or to the dread of death. We need to work to realize this and to acknowledge how challenging the work with the physically ill can be.

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Loss of Humaness. the Ultimate Trauma