Metaphors of glaucoma

ROBERT K U G E L M A N N A N D RICHA R D E. B E N S I N G E R

M E T A P H O R S O F G L A U C O M A

ABSTRACT. In a phenomenological study of glaucoma as an illness, 31 patients were interviewed. The goal of the study was an explication of the meanings of the experience of glaucoma, in a twofold sense: (1) the face, the role, or the self of the patient that responds to the illness; (2) the visage that the illness presents to the patient. This twofold explication was achieved by generating a classification of the interviews in terms of the dominant metaphor that emerged in each interview. The following basic metaphors are presented through case material: glaucoma as an accompaniment of aging, as blindness, as pressure, as an abstraction (and a weapon), and as fate. Variations on these themes demonstrate the necessity, in such work and for enhanced communication with patients, of paying attention to both the face that the illness presents and to the self that responds.

INTRODUCTION

Consideration of the experience o f being ill demands that researchers accept as

a frame of reference the world as revealed by the words and behavior of the

patient. Biomedical definitions can play only a subsidiary role in this framework,

and only insofar as the patient takes cognizance of them. The primary reality for

the patient is the illness, to use the distinction between 'disease' (biomedically

defined malfunct ion) and 'illness' (experience of being sick) made by Kleinman

(1980: 72). An illness is a meaningful occurrence in a life shaped by cultural,

familial, and personal background. A major task of the study of illness is one

of articulating the forms of experience, and of the ways that patients respond

to these forms. Clarification of these meanings of illness serves to improve not

only our basic understanding o f the impact of illness, but also communicat ion

between health care providers and their patients.

The present s tudy consisted of interviews with 31 glaucoma patients.

Glaucoma is an ideal disease to study as an illness, because it is a chronic eye

disorder demanding a long-term relationship between physician and patient.

While there is no type o f personali ty prone to glaucoma (Berger and Zimet

1959), stress, emotion, and even the anniversary of traumatic events can induce

or exacerbate symptoms (Inman 1927; Schoenberg 1940; Sykes 1949; Ripley

and Wolff 1950). Glaucoma cannot be neat ly abstracted from an individual life,

and i f for no other reason, the fact that the symptoms have gestural significance

makes understanding the pat ient 's lifeworld important . But this is not the only

reason. Upwards to 50% of glaucoma patients are non-compliant with medical

t reatment (Kass and Becker 1976). The evidence suggests that a chief factor

for this non-compliance is the number of poor physician-patient relationships

(Riffenburgh 1966). Assuming that increased compliance is a valid objective,

Culture, MedieineandPsyehiatry 7 (1983) 313-328. 0165-005X/83/0073-0313 $01.60. © 1983 by D. Reidel Publishing Company.

314 ROBERT KUGELMANN AND RICHARD E. BENSINGER

one way to improve the relationship between physician and patient is to understand what the patient is experiencing.

This study undertook a phenomenology of glaucoma, i.e., descriptions of glaucoma as an illness were elicited. The goal was not an analysis of cause-effect relationships, but an explication of the meanings of the phenomenon (Giorgi 1970). The 31 subjects were patients of the University of Washington Hospital Eye Clinic. The interviews explored both explicit and tacit meanings of glaucoma. The explicit sense was gleaned by asking direct questions, which were preceded by obtaining a brief account of the patient's life, illness, and its treatment. Tacit understanding, because unarticulated (Polanyi 1959), could be sought only indirectly. In the interviews, the tacit meanings were sought by obtaining descriptions of specific problems, issues, feelings, beliefs, and memories.

This compilation was used to generate the classification scheme presented below. The stories, beliefs, and feelings make the lifeworld of the patient mani- fest; they show the manner in which the illness exists for the patient (van den Berg 1972). They show how the patient faced glaucoma in a double sense: with what face (role, self) the patient regards the illness, and the face that the illness assumes in the patient's life. The descriptions were grouped in terms of their dominant metaphor, each metaphor being the manner in which glaucoma emerged in the interviews. To call these modalities of experience metaphors is appropriate for two reasons. First, a metaphor is an implied comparison. It says what a thing is like, what it resembles, from a particular point of view. A metaphor illuminates a thing from a definite slant, and so presents the thing as it is actually experienced, and not as some hypothetical thing-in-itself. Metaphors are both affective and cognitive; thus they reveal the point of view from which the thing is being perceived. Experiential life as such can be called metaphorical, insofar as the appearance of a thing in a particular manner always reveals both the one who experiences as well as the thing experienced (Roman- yshyn 1982). Second, a metaphor is an implied comparison. The resemblance is asserted in a tacit manner, because the analogical character of glaucoma occurs primarily at a prereflective level of experience - the metaphor is stated without thematization. In some cases, however, the patients were quite self-reflective, and for them the resemblances were explicit.

THE METAPHORS

1. Glaucoma is an Accompaniment of Aging

Most of the patients interviewed were over 65, and all were aware that glaucoma was one of the diseases associated with advancing years. When this perception was figural, it was possible to envision glaucoma primarily as one of the con-

METAPHORS OF GLAUCOMA 315

comitants of old age. The essence of this metaphor is the insight that with age, one's body decays. If the patient identified with the 'aging self', with the me- that-is-growifig-old, glaucoma had a place in the patient's life. Such is the case

of a retired nurse, the first presentation in this series. If the aging self was alien to the patient's identity, as in the case of a retired college administrator, the fourth case presented, glaucoma threatened personal existence, and was lived

as "not-me" (Sullivan 1953). If the patient identified with the aging self, the

metaphor's emotional tone was one of acceptance: "Glaucoma is something I learned to live with." "You can't expect to have no stress in life." The sense of the metaphor is that glaucoma 'accompanies' one in one's life.

a. Glaucoma is a companion who ensures a social life: A 74-year-old retired nurse, with chronic simple glaucoma, who describes herself as a "chatterbox". She is very sociable, and coming to the clinic is important as a social event. (In enjoying her visits to the clinic as an outing, this patient is typical of many.)

Her metaphor reflects her career as a nurse; she feels that she cannot expect to live so long without experiencing some difficulties. "Why should I be different

from other people?" She does not perceive her body as something that could be

flawless forever, and she spoke of the horrible disorders she encountered in her nursing work. She describes herself as a compliant patient, and her attitude

toward the medical staff - and theirs toward her - is friendly. She does not

perceive herself as fighting glaucoma when she takes eyedrops or receives laser

treatment. She says that she accepts glaucoma, and makes a place for it in her life. Her attitude was calm and accepting. She is not handicapped at all - her

vision is good enough for her to drive even at night - and her only complaint is that light hurts her eyes, so that she wears a visor when she drives during the day. She has had asthma for a number of years, so when she was diagnosed as having

glaucoma, she already knew how to manage a chronic disease. When she first began to take pilocarpine, her vision actually improved. She stated that glaucoma was not an enemy to be fought.

In her emphasis that she makes a place for glaucoma, she presents the metaphor, 'glaucoma is a companion'. She "takes care of" her glaucoma, and her tone of voice suggested that this treating and caring had an overtone of nurturing

- treating glaucoma means taking care of her 'patient self' by her 'nursing self'.

This patient self is the companion, and through the mechanism of displacement,

glaucoma is the companion. She likes her physicians and has faith in them. With all the advances in

treating the disease, she feels that she has nothing to worry about. This re- latively carefree attitude exists despite the persistence of minor problems: some days she sees haze before her eyes, some days not. Some days her glasses give her no problems in terms of visual acuity, but on others they "drive me


crazy". Timoptic (a drug used to treat glaucoma) may aggravate her asthma, but she views this as a manageable problem. In short, her explanatory model (Kleinman 1980) of glaucoma strongly resembles the biomedical model in

terms of prognosis and treatment. She tends to be passive in the care of her eyes. She said that when she was

first told to take drops for her eyes, she did not ask the reason for them, "but I suspected". Because light hurts her eyes, she said she once jokingly asked for "blinkers" such as horses wear. This humorous request asks for a condition

resembling the tunnel vision of advanced glaucoma, and suggests a passive

acceptance of her 'companion'.

b. Glaucoma is a trickster. The patient with chronic simple glaucoma is an 80- year-old man who graduated from correspondence school last year; he is a writer. He described growing old as a slow condensing process. As one grows older, one "falls into smaller patterns". "You have to look for that in the eye, too", he said. Glaucoma is his companion, his smaller pattern. But his attitude toward it differs from the preceding case. He said that there is one word for glaucoma: "tricky". "You've got to be on the alert. It'll scare you at times, but don't panic". He said he watches for the pains in his eyes, and that if they give him a headache, he rushes to the hospital. His description of the changes in his vision were vivid. He said that one time when he suffered intense pain in his eyes, he saw the world before him as a "fantastic modern painting. Blobs of green, light and dark". His vision at the time of the interview was good, but

it fluctuated considerably, he said. Glaucoma, a companion of his aging, is a wily trickster who will steal his

vision if he is not careful. His attitude toward this trickster is active, one of alertness, and he presents himself as someone who tries to outfox his illness. In line with this, he has interests that do in fact outwit glaucoma: he writes, describing in such detail that he creates pictures of things and events. Speak- ing with him confirms his ability to do so. He described everything with skill and energy. He also outwits glaucoma by remembering: he said that he "has good pictures of the past". In effect, he translates the visual dimension of life into language by means of imagination: this is the 'gift' of the trickster, as we shall see. Finally, he has an interest in extrasensory perception. He described an incident at the zoo, in which, by looking a gorilla in the eye, he "threw him a picture", to which the gorilla responded by behaving in a certain way. In these various ways he outsmarts glaucoma, enjoys life, and, as the last example shows, he maintains his eyes as instruments which overcome distance. In fact, his descriptions recall the symbolism of the eye, especially the eye as emblem of power (as displayed on the U.S. dollar bill). Despite his illness, his eyes are not impotent. We also see how glaucoma, by altering his visual perception of the


world, gives him a new perspective - gives him new eyes - enabling him to value what he sees (the world as a modern painting, the details, the past, the esp) as

others do not. This man's trickster-like illness, and his trickster-like response to it, conform

to the traditional understanding of Trickster figures. Hermes and Prometheus

in Greek myth, and the Raven of the Northwest Coast, are such wily figures. They are lightbringers, involved with the creation of the world and of human

culture. They bring magic to the world, and could well transform the everyday

world into a modem painting. Finally, the Trickster, as he leads one from

one's familiar world into a new one (the Raven cracking the shell and freeing

humankind), can 'rob one blind'. The Tricksters of myth, and this man's tricky glaucoma, are profoundly ambiguous figures. While they do promote trans-

formation in the human order - as in this man's life - it is well to remember that Lucifer is a classic Trickster. What is striking in this man's experience is the fullness of the Trickster mythology: his tricky illness is both a defect and

a possibility for a fresh view of the world. Much of the imagery associated with

glaucoma in current medical texts and in medical history, imagery which can be discerned if the texts are viewed as also presenting metaphors (Kugelmann

1983), concerns the Trickster-like character of glaucoma as an illness.

c. Glaucoma is a front ier . In the next two particularizations of the metaphor,

the emphasis shifts to the realization that as one ages, irrevocable changes

ensue. Glaucoma marks one of the limits that are reached. An 80-year-old retired medical records librarian (chronic simple glaucoma, failed surgery) has had glaucoma since 1965. She has vision in her left eye only. Her father was a mis- sionary in Alaska, and she grew up in genuine pioneering circumstances. She has suffered a number of serious diseases throughout her life, some of which (including TB) have forced her to bed for long periods of time. Typical of her

spirited attitude is the following: she first found that she had glaucoma after having noticed that her right eye looked pink and felt as if it were burning. Also

at night she noticed rainbows around lights: "The most beautiful rainbows:" She would sit and look at them. "Then I wondered if they indicated glaucoma".

She was able to appreciate the esthetic quality of her changed visual experience,

even as she was able to appreciate the seriousness of the situation. At present, her remaining vision is poor. She can recognize familiar faces,

but cannot read or watch movies. She said that she stopped going to the movies

because since she could not see the screen she would fall asleep. "It wasn't a comfortable bed". The remark was typical of the humor with which she faces the issue.

Glaucoma has meant loss for her. She has had to give up other activities in addition to movies. For example, she no longer plays cards, because she cannot


distinguish red cards from black ones. "What good would I be as a bridge part- ner?" But she has taken up dominos - white tiles with black spots - at the home for the elderly. She said with a smile, "dominos can be a very scientific

game if you study it". Her loss of the movies she has compensated for by attend- ing concerts more frequently, and she said that she appreciates music more than

she had. She cried as she expressed the agony of loss of vision. She counts herself

lucky that she has family in the city who are a great support for her. And she

has taken the loss as an opportunity to explore new territory. Given the way

that she recounted her life history, with its beginning in frontier Alaska, the metaphor of frontier suggested itself. Having glaucoma - crossing into a novel

situation - is like living in unknown territory that must be settled and civilized

(an attitude reminiscent of the work of her father). Moreover, her combin- ation of optimism and realism rings true to the image of the hardy American

pioneer. Other patients interviewed and a published autobiographical account (Craig

1974), share with this pioneer the sense that glaucoma is in many ways an un-

known - and not only a negative - domain. Glaucoma can even be a teacher who initiates one into the things of the spirit (Kugelmann 1983:171).

d. Glaucoma is a force which isolates a 68-year-old retired college administrator and teacher with chronic simple glaucoma. His bearing is that of a leader. During the interview he stood up, paced, and in this way took command. When he sat,

however, his wife comforted him in his anger and was solicitous toward him - as if he were more frightened than he would admit. He is a frightened and angry man. Used to being in charge, he finds himself losing control over his life.

He kept 'diverting' the conversation from glaucoma and toward situations in which he, although he had less power than others (businessmen, politicians),

knew more than they. These digressions illustrated his attitude toward glaucoma and the medical community. Glaucoma angers him because it constricts his life; the medical community angers him because, he said, physicians have not

respected his intellect and his education. He said that once a physician's recep- tionist erased the 'Dr.' before his name when he said he was a Ph.D., "because she thinks only M.D.s are doctors". Growing old angers him: aging is not a process internal to his life, but a foreign entity thrust upon him from without.

It imposes limits, against which he rails. Glaucoma, as part of the aging process, limits him. When the glaucoma was

first diagnosed, he was given eyedrops, to which he had a violent allergic re-

action. Consequently, he stopped taking them and for seven years sought no further medical care. Physicians "knew nothing". He assumed that the glaucoma

would progress along with the rest of his declining health, and that he would


die before blindness hit him. But now his eyesight is deteriorating rapidly, and he was frightened into returning for treatment by the following incident: he went out one day to get the mail (the mailbox is some 60 feet from the house); when he turned around he could not see the house. "Just a splay of color",

he said. This story typifies his experience of glaucoma: it isolates him in an unrecog-

nizable word. It shrinks his world. He used to read as much as 14 hours a day, he said, but now he has had to cut back considerably. He no longer drives at night, because for every light on the road, he sees 32. He no longer attends meet- ings at night because he must ask for rides - and people get tired of giving them, he said.

His refusal to deal with glaucoma all those years, his anger and his sense of helplessness, suggest that he experiences glaucoma as something that comes from the outside and narrows his life as it blurs and fragments his visual world. This intellectual has kept himself 'in the dark' about glaucoma and has, in effect, aided the progress of the disease. Glaucoma reflects and reinforces the isolation he feels. It has control. He rails against it but has done little about it; for him to do something would mean admitting loss of power. For this man, glaucoma is a powerful, dangerous force that he seems helpless to fight. One senses how powerful the illness appears to him by the force of his denial. He denied the seriousness of his loss of vision by assuming he would die before he became blind.

The contrast with case lb is striking. One suspects that his protests mask a fear: the fear that he is a fool. The way he stormed throughout the interview (reminding the interviewer of King Lear), his fury with the physicians for their lack of respect, his anger at age and his illness, have left him in a situation that seriously constricts his intellectual life - his chief pleasure. The unexpressed fear coursing through his remarks and expressed in his comportment with his wife seemed to be: maybe they are right; I am blind, inferior, ridiculous. His education almost certainly has exposed him to traditional imagery in Western culture which equates the elderly with fools (Chew 1973).

2. Glaucoma is Blindness

This metaphor emerges from the actual or feared loss of sight. In our time, when medical advances can prevent loss of vision for most glaucoma patients, it is not inevitable that glaucoma signify blindness. (One might speculate that medical advances make possible a proliferation of ways of experiencing glaucoma.) when patients experience glaucoma as primarily rendering them sightless, blindness has no univocal sense. Blindness means isolation, ignorance, darkness, dependence, depending upon the life situation of the patient. One woman in her late twenties,


not ready to identify with being a blind person, spends a lot of her time helping other people. Often this means being exploited by drug addicts. Her motive: when she 'helps' others, she feels in control, independent, and not blind. On the

other hand, she stated: "Am I too blind - literally - to see the truth about other people?" She identifies uncaring and exploitative behavior as a kind of blindness. To be blind is to be incompetent and selfish; since she is a caring and self-sufficient person, she is not blind. Yet she cannot see more than the differ- ence between light and dark.

a. Glaucoma is isolation. An 82-year-old woman (chronic simple glaucoma, suc-

cessful surgery) was interviewed while she was hospitalized for a serious kidney

condition. She said that she is gradually losing her eyesight; she sees better with her right eye than with the left. She needs glasses to read. She is active in polit-

ical and social matters, as she has been since the 1930s. An engaging, assertive,

intelligent woman, she clearly dislikes feeling drained of energy because of her kidney condition.

She is "scared stiff" o f going blind. She said she does not think she would have the courage of those "blind people who walk around with the sticks".

She fears that if she lost her sight, she would curl up in a corner and die. Blind-

ness means isolation to this active woman who walks to work, goes to the state capital for demonstrations on behalf of the elderly, etc. Isolation among the

elderly is an enemy she fights. She said that too many old people retire and limit their lives. She advises people to take courses - "not for a Ph.D. or something" -

but to stay involved. Being engaged in the world at large, for this patient, is essen-

tial for a good life. She has been taking courses for as long as she can remember. She said that death is inevitable, and it is important to keep living actively, up to the end if one can.

For this woman, taking care of her glaucoma is a means to an end: health is an intermediate goal which permits an active life in the service o f others and of society. Because o f her orientation toward the future, other metaphors which surfaced in the interviews belong in the background. Chief among the secondary themes was: glaucoma is an accompaniment of old age. She described glaucoma as "one of the things that happened to me. I 'm just thankful it doesn't affect the mind". This anxiety-reducing stance is a secondary one for her, since her at-

titude toward glaucoma is: accept it, deal with it, do not dwell on it, and get on with the business of life. Her fear is that glaucoma will blind her, and leave her an isolated, helpless, passive old woman; this potential self is horrifying to her. Her identity is such that she can be an aging self, but not a dependent, passive self.

b. and c. Glaucoma is ignorance. A 24-year-old college student has glaucoma secondarily to clinical malpractice when she was a child. (She has had successful


surgery for this condition.) While she is compliant in the medical care she is

receiving, she resists her mother's efforts to get her also to pursue holistic approaches such as meditation and eye exercises (although she does listen to relaxation tapes), because they require discipline. She likes it, she said, when the

doctors take charge o f her medical care. She said she does not "dwell on" her glaucoma. She wants to pursue career

goals, and this "sword hanging over my head" gives her added incentive. Know-

ing that she might be blind in 1 0 - 2 0 years has "changed my perspective," giving

her an appreciation of the act o f seeing that her friends do not share. "I 'll stare at a tree, at the stars". She said her vision at present in her right visual

field is gray, not at all clear. She has little depth perception, but she still drives - although she has to concentrate in order to do so, and she said that she only

drives familiar routes. She stated that she tries to take glaucoma in stride, "not really in stride,

but live with it". She also tries to find out about the treatment, medications, and the disease. She said that she asks lots of questions. "I don' t take things

blindly the way I did the first time". The message and the metaphor are clear: glaucoma resulted from her 'blindness' as a child to the negative effects of the medical treatment she was receiving. To preserve her eyesight, she will have

to keep a watch on the physicians. She said that she trusts her present physi-

cians, that they have not proven mistrustful. Interviewing her was difficult, especially at first. She wanted to know what

this kind of interview was all about, its purpose, etc. An uneasy tone pervaded both interviews. This seems to reflect her vigilance. She will not automatically trust, and with reason. Not knowing, not seeing what is going on, is dangerous.

Ignorance is blindness, and blindness is dangerous. The onset o f her glaucoma happened in childhood, and the selves active in

her experience are those of child and adult. To be a child means to be dependent

gullible, ignorant, and blind to the ways o f the world. An adult is watchful and wary. She is fighting being dependent - hence ignorant - but she does not really

want to know, or be in charge o f her health care. She made a point of saying that she enjoys the care she receives and that she does not want the responsibility

implied in holistic health. She has not relinquished the child self. An 84-year-old black man with chronic simple glaucoma, said that he tells

only a few people that he has glaucoma because some people will take advantage of a person who cannot see. He keeps his disease hidden from public view because he feels helpless. The metaphor of ignorance suggests here, as in the preceding case, that if one is blind, one will get hurt because of an inability to see (know) what is going on. Helplessness produces suspiciousness.

This attitude of guardedness he brings with him to the clinic. He said that the doctors told him his eyesight was getting worse - and they must know since


they went to school, he said with an ironic laugh. But he said, his eyesight is

not getting worse, and he demonstrated this fact by reading a few letters from a piece of paper he was carrying. He also said that the physicians told him that

he must not be taking his eyedrops since his vision is deteriorating. But he said

that he was taking them, and presented a bottle of drops that he had in his

pocket. He assumed that the interviewer's aim was to discover if he were in fact

taking his drops. His mistrust is most likely built on three grounds: a general mistrust of the white world; a mistrust of those who will take advantage of

someone who cannot see (and who has grown old; as in case 2b, the ignorance of blindness makes one helpless); finally, a mistrust based on the differences

between his explanatory model and that of the medical staff. He stated that glaucoma is "dry eyes", and that is why he needs drops. The

dryness of his eyes can cause blindness. He asked if glaucoma could grow like a cataract. The lack of congruence between the explanatory models of the

patient and the staff might feed his mistrust by making the patient feel that he is not being leveled with. Interestingly, his 'dry eye' image harkens back to the Latin word glaucoma, which could mean 'cataract', and which was also used metaphorically as 'dust' in the context of the phrase, "to throw dust in the eyes of someone", meaning to deceive someone. If one experiences the disease and the context of its treatment as involving deceit, then one will not

be open and trusting. For this man, glaucoma presents a deceitful face, and

he responds to it by staying alert for the 'dust'.

3. Glaucoma is Pressure

Glaucoma the disease is defined in terms of heightened intraocular pressure.

Even biomedically, the level of the pressure can express the psychological situation of the individual. Afortiori , glaucoma the illness, when experienced

as pressure, belongs to the semantically rich world of 'stress', 'tension', and

'pressure'. A woman in her early 30s, a college graduate, has had successful surgery

for treatment of chronic simple glaucoma, and is currently on no medication. She comes from a family with a high incidence of glaucoma - both her father and brother have glaucoma. She first found that she had glaucoma during her senior year of college, when she was going through a crisis in her personal life concerning the transition from "being told what to do" to adulthood and its independence. She connects the onset of glaucoma with that stressful period.

Because she takes no medication, glaucoma is not a daily issue, and the interview seemed somewhat artificial to her. Nevertheless, despite the fact that she does not often think about glaucoma, it does affect her life. She watches her


fluid intake and she jogs, and both activities help keep the pressure in her eyes low, she said. Jogging, in particular, helps the fluid in her eyes drain more rapidly. She knows this because before she runs, her eyes feel dry. After she runs, they feel moist and she interprets that to mean that the fluid is draining. She also feels tension in her eyes. When she is under stress at work, her eyes ache - she feels pressure in the back of her eyes. "Maybe that's the pressure in the eye". Jogging

helps relieve the tension that builds up at work, and it also moistens her eyes. For her, then, having glaucoma and experiencing it as 'pressure' in the broad sense of both psychological stress and intraocular pressure motivate her to jog and to watch her fluid intake. She experiences that crises in life bring on glaucoma in her family, she also stated. She has seen crises produce glaucoma in her father (when he retired) and in her brother (when he was finishing school).

Her metaphor, glaucoma is pressure, reflects an explanatory model which is a syncretism of the biomedical model and the psychology of stress current among the American middle class (her socioeconomic group), and the premodern medical idea that glaucoma is associated with the 'wetness' and 'dryness' of the eyes (as in the preceding case). We also see another metaphor in the background of this case, i.e., the sense that glaucoma is one's fate. Glaucoma appears at a turning point in one's life. However, her sense of being in control, a self- determining self, diminishes the force of the fate metaphor.

4. Glaucoma is an Abstraction (and a weapon)

While this metaphor appeared infrequently in the interviews, it is reasonable to believe that it occurs quite often. Since the disease commonly is asymptomatic, a patient may have only the word of the physician that glaucoma is present. In this circumstance, glaucoma is an abstraction: the disease exists, but not the illness. Nevertheless, glaucoma does play a role in the patient's life, insofar as the patient uses eyedrops and makes periodic trips to the physician's office. It is not inevitable that if a patient has no symptoms, that glaucoma will be experienced as an abstraction, nor that symptoms, when they exist, will be linked to something called 'glaucoma'. In other words, glaucoma may not be an abstraction in the absence of symptoms, and it may be so even in their presence.

A 67-year-old woman came to the clinic two years ago to have her eyes checked because she felt that she needed new glasses. At that time she was diagnosed as having chronic simple glaucoma. She feels no symptoms. She still needs glasses but she cannot get them, she said, because she is told that her eyesight fluctuates. She does not experience these changes, and emphasized both that she feels nothing, and that having glaucoma has not changed her life at all. In fact, the only effect she had felt resulted from pilocarpine drops - which she no longer uses - prescribed to treat her glaucoma. Pilocarpine caused a burning


sensation in her nasal area; moreover, she had to awaken at 6:00 a.m. for the first drops of the day - a task she disliked. Although she now uses Timoptic, and only twice daily, and although this drug causes no side effects, she has another

problem with its administration. Her husband puts the drops in her eyes because she has trouble doing it. Sometimes he administers them from too high, and they splash all over her face. The mess angers her. She said that she wishes that physicians would come up with a simple treatment that is both painless and easy to

administer. In the context of her life, glaucoma is a minor problem. She proudly asserted

that she was one of the few people to survive cancer of the sigmoid colon, and that because she once had cancer, she knows how to deal with fear. She is afraid of losing her eyesight, and she said that it is worse to lose sight in old age than in youth, because the elderly are more set in their ways. In addition to being afraid, she also uses glaucoma as a weapon to control her husband. She said that when she argues with him, she will say: "How would you like to be going blind?" She said that although she does not believe this, she fears it might be true. Although she feels nothing, and readily agreed that glaucoma is an abstraction in her life, she fears going blind. Glaucoma is an abstraction with reality, a frightening thought and a gnawing anxiety, if nothing else. It is an abstraction that she wields as a powerful weapon, and the metaphor, glaucoma is a weapon, is operative in her experience.

Faith gives this abstraction reality. She said that before her cancer surgery, her husband brought a minister to speak with her and that after having done so, her fear of the operation disappeared. She is now afraid of glaucoma, but has faith that she will be all right. She has faith in the physicians not only in their treatment of glaucoma, but also in their word that she has glaucoma. Because of her faith in the physicians' knowledge, she said that she complies faithfully (although her chart indicated that she has been less than faithful in following orders to treat her hypertension, another disease that can be an abstraction). Finally, because she survived cancer, she has faith that things will work out with her glaucoma.

Glaucoma as an abstraction implies that glaucoma is an unknown entity: something dangerous that threatens her life without her even being able to feel its presence. Elderly patients must be commonly in such vulnerable positions: health fails, spouse's health fails (her husband was hospitalized at the time of the interview), friends die, the world changes without one being able to do anything to control what happens. As this woman points out, the elderly can be less flexible than the young in dealing with change. Faith, a rock of stability in the shifting sands of time, may be all that is left, and faith may be hard to sustain. For in the case of this woman, to have faith in the words of her physicians means to increase the amount of anxiety she feels. Her faith appears to be battling her tendency to reduce anxiety by means of denial, expressed as invulnerability


because she survived cancer. This faithful self of hers both sustains her and

validates the abstraction that gives her anxiety.

5. Glaucoma is Fate

With this metaphor, the patient faces Fate: the sense that there was virtually nothing that could have been done to prevent glaucoma or loss of vision; or the patient feels that glaucoma is simply something that happens, not as concom- itant to aging or anything else. Typically, the patient experiences glaucoma as part of his or her family inheritance. This sense of being fated to glaucoma may or may not be accompanied by a fatalistic attitude.

A retired librarian from an old Yankee family, this woman has had chronic simple glaucoma since 1972. Her eyesight, she says, is stable now; she can drive, although because she has lost some peripheral vision, she does not drive at night, since cars appear to "sneak up " on her. The iris of her left eye is partially paralyzed, moreover, and does not open fully. But she still reads and does genealogical research, which she enjoys and which, she said, helps her to cope

with glaucoma. Glaucoma runs in her family, she said. She has found that her greatgrand-

father was diagnosed as having glaucoma, as was his mother, who went blind. This inheritance is the principal way that she made sense of glaucoma in the interview. But not only glaucoma: how it progressed as far as it did, and how she copes with it are also inherited. The physician who originally treated her kept her on eyedrops too long, she said. She began experiencing double vision and she became frightened. Only then did she seek a second opinion, and the second physician recommended surgery which was successful. She said that she was brought up in "the strict old-fashioned Methodist way: do what you are told and don't think". She said that as her eyesight got worse she should have stopped and thought: "Now, my eyes are getting worse, I should do something else". But she did n6t, until too late. The reason that her eyesight is now as bad as it is, then, is because she had inherited a docile attitude toward authority figures.

Her inheritance is not monolithic. Even second guessing herself and her self-recriminations belong to her inheritance. She said that her family religious background was twofold: Baptist and Methodist. The Baptists in her family were more liberal: they danced and played music, and she herself plays a musical instrument.

Her ways of coping with glaucoma she also experiences as inherited. Having been taught to accept things, she not only accepted the first doctor's advice, she also accepted the fact that she has glaucoma - after first resisting the truth. Finally, the genealogical work runs in the family; it has been done for at least three generations. So her fate has been both a curse and a blessing: it gave her


the predisposition to glaucoma, the docile attitude, the determination to reckon with life, and the ways to deal with anxiety-producing situations. Glaucoma has faced her as part of her inheritance, and she has responded by enacting the family drama.

CONCLUSIONS

The five metaphors presented above were not the only ones the interviews uncovered. Three other ones appeared: an enemy, a punishment, and an escape from adult responsibility. The latter two have been described in psychoanalytic literature. The first, the military metaphor, is as old as Western medicine; interestingly enough, the patient who envisioned glaucoma as an enemy to be defeated is the spouse of a physician. We have no reason to assume that the entire list of eight metaphors is exhaustive, nor do we have reason to believe that these metaphors belong exclusively to glaucoma. The metaphor of blindness, for example, could be shared by patients with other eye diseases, and that of pressure and abstraction by patients with hypertension. To some extent, moreover, all the metaphors also present modes of experiencing aging. Since one of our arguments is that glaucoma cannot be understood except as a phenomenon in an individual's lifeworld, the fact that the metaphors indicate more com- prehensive attitudes is not surprising. The way someone reckons with a serious illness does have a bearing on the way other serious issues are faced by that person.

We view these interviews as having produced only first order results. Given that glaucoma concerns the eye and vision, that it is ordinarily insidious, that it is usually controllable but not curable, it should be possible to make more precise formulations of patients' modes of experiencing glaucoma. To understand glaucoma the illness, especially in its tacit significance, longitudinal studies are necessary. All our subjects have had glaucoma for long periods of time, and it is important to understand the experience of such events as moments of crisis, the initial diagnosis, and the temporal dimension of glaucoma as an illness. Indepth study would make clearer the psychosocial and cultural meanings of glaucoma as an occurrence in the lives of primarily older people.

Another implication of the interviews that needs further study concerns not the life situation of glaucoma patients, but the experience of the body. When someone experiences a threat to health, which 'body' is threatened? Just as we distinguish between glaucoma as a disease and glaucoma as an illness, so too we can distinguish between the body as understood by biomedicine, and the body as experienced, particularly the experience of one's own body. The majority of the patients did not experience their glaucoma primarily as a mechanical defect in the eye. Most of the patients were aware of the medical definition of


glaucoma, but that model did not emerge as the primary mode of experience. (Two men whose explanatory models focused on the mechanical aspects of the disease were themselves mechanics.) And far from experiencing their bodies

within the biomedical metaphor, 'the body is a machine', they tended to ex-

perience what happened as related in some way to other issues in their lifeworlds.

The model for experience of the body that suggests itself is 'the body is a

microcosm', insofar as the imphcations of the illness resonate throughout the

patients' lifeworlds (the macrocosm of their lives). This observation about the microcosm leads to another concluding point.

Several times we noted how a patient's mode of experiencing glaucoma harkened

back to obsolete medical theories of glaucoma. It may well be, as Lockhart (1977) has shown with cancer, that outmoded premodern medical theories have

psychological significance, insofar as they articulate modes of experience in the

guise of etiological explanation. The cultural dimensions of the experience of glaucoma need further elucida-

tion. Consider the patients for whom glaucoma meant blindness. None experi-

enced the process of becoming blind as an initiation into a new life sanctioned by the community. The Western tradition may speak highly of blind seers and

bards, but Monbeck (1973) lists fifteen ways the blind have been considered in Western history, and only two of them are affirmative. In our work, only the writer and the retired medical librarian (cases lb and lc) were able to value in a positive way the altered view of the world that glaucoma afforded.

These interviews show that there are many ways for glaucoma to be an

illness, that it has different faces. However, to understand the psychological experience, more than the face of the illness must be explored. The self that responds, the role the patient adopts in facing the illness, co-constitutes the

meaning of glaucoma.

Dept. of Psychology, University o f Dallas, Irving, Texas 75061, U.S.A.

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Metaphors of glaucoma