Personal Time: The Patients Experience

T. Jock Murray, MD

When a life-threatening or chronic disease is diagnosed, patients may nd that their sense of time, the passage of days, and their view of the future are altered. Most of the time, people live in a sense of linear time, or kronos. When illness strikes, they may begin to spend more time in kairos, a sense of soul-satisfying time, such as the feeling one gets when walking on the seashore with a grandchild, working in the garden, or talking with friends over good food and wine. This article comments on two patients, one who explores kairos through a diary that documents her positive attitude toward coping with multiple sclerosis, and one, a young artist with Hodgkin disease, who explores his condition through 96 paintings of his experience of the disease. Rather than the devouring tyrant of linear time, life can be seen in a circular fashion, the eternal braid of Hofstadter. Patients begin to see life more in terms of cycles of daily events, routines, and the change of seasons. Illness brings one close to the bone of the souls needs, with a reappraisal of the journey of life as a continuous line, to life spread out on a landscape that includes the past and the future.
Ann Intern Med. 2000;132:58-62. For the author afliation and current address, see end of text. It is one of the peculiarities of Time that it is intensely private and yet so widely shared. We could put it like this: that supercially, in the world of clocks and watches and appointments, we share Time; then, on a deeper level, it seems intensely private; and then, on a still deeper level, perhaps we begin to share it again, in ways we cannot fully understand. J.B. Priestley, Man and Time, 1964 (1)

diagnosis. Slowly she got her life back on track, but recovery seemed to take forever, and it dragged on through a hot, humid summer. She had sick leave from her job only until mid-September and made a mental resolution to be back to normal activities by that time. Recovery seemed agonizingly slow, while at the same time her self-imposed deadline approached quickly (Figure 1). As her physician, I had to learn to relate to her sense of the ow of her life. Rushed consultation, rapid changes in medications for each new symptom, and concentration on the disease would not help her cope with her challenges. Understanding that she wanted to concentrate on her life and how it could be altered and reshaped to deal with the disease helped me to help her. She did not want discussion of mechanisms of demyelination and a prescription. She wanted encouragement to keep going, to continue gardening despite numbness in her legs, to travel across the country to a wedding. Her disease had changed her view of time and the journey of life, and she wanted permission and encouragement to get on with it.

Of Time and Illness Patients generally have variable perceptions of how time moves, depending on the circumstances and the illness. A painful procedure can seem to last longer, but apprehension of a coming event that they dread can make time seem to move too fast. Fever increases the rate of alpha activity in the brain and our sense of passing time. In hypothyroidism the days slow, as do bodily movements and thinking. Hyperactive children feel that time passes more quickly (2). Our bodies have their own sense of keeping time with internal clocks, circadian rhythms, and rhythms in nonnervous system organs, noted in our cardiac pulse, renal output, menstrual cycle, sleepwake cycles, and brain rhythms. Regardless of whether we are well or ill, time can seem to pass too slowly or too quickly, no matter what the Newtonian clock on the wall tells us. Time seems slow in childhood, but we perceive it as moving by faster as we age. Sir Roger Bannister described the last 4 seconds of his historic under-fourminute mile as seemingly never ending. Senator Robert Kennedy, commenting on the shortened life of his brother, said that some people live their lives faster than others. Personality characteristics can

y patient Margaret regularly keeps a journal, the story of her lifelong journey with multiple sclerosis; she allows me to read it on each visit. She has reconciled herself to the loss of some abilities and activities and to her altered life plans, but she doesnt dwell on these. Instead, she writes about the many things she can do, her family and friends, her garden, the autumn colors. She writes that she has a new life now, with a different view of the future and, in many ways, an enhanced appreciation of experiences and of time. Her sense of time and future changes depending on whether she is in an attack or in remission. One of the difculties of her disease is the requirement to adjust anew after an attack; once she has adapted to a new level and way of life, the next attack leaves further decit, demanding a new adjustment. Margaret comments that her sense of the passage of time changes as her disease and her life change. Life seemed to stop for her when she had her rst attack and learned the
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modify how time is experienced: Some people feel that time is always interminably slow, others that its always speeded up, and highly integrated people experience it with great variation (3). The task we undertake can change how we perceive time moving. Time ies when we are working on something we enjoy and to which we are committed and enthusiastic, but it slows down, moving at a snails pace, when the job is ponderous, depressing, or difcult. Illumination, barometric pressure, anxiety, stress, pain, anticipation, and feeling overwhelmed by tasks and deadlines can all affect our sense of time. Drugs can affect time: Caffeine and thyroxine decrease the estimation of time, and amphetamines, marijuana, and opium increase it. Busy days, constructed around our watches, our pocket organizer outlining the daily sequence of meetings and duties, and meals and TV schedules, make it seem as if time ows in a straight line; Dossey referred to this experience as the devouring tyrant of linear time (4). Because earlier cultures saw life as continuous cycles of the days, months, and seasons, speculation has arisen about when modern societies began to see time as linear. Shallis (5) felt it was the development of the clock that yoked mankind to a linear, countable time and lost for the people of modern Western culture that organic feel for times endless patterns; McLuhan (6) believed that the construct of linear time began with the formulation of modern language, with its linear form); and Szamosi (7) related it to the invention of polyphony in music during the Middle Ages. These notions are more than academic in this discussion; my patients see life in cycles when an illness strikes, a return to the circular, eternal braid described by Hofstadter (8). When life-threatening disease looms over us, everything changes. Patients often talk of the moment when they heard they had cancer, amyotrophic lateral sclerosis, multiple sclerosis, or leukemia as a heart-stopping thud, a Wagnerian chord, as if time stopped. Up until then, our fast-forwarded lives allowed us to ignore and repress the mental and physical bumps in the road of life, expecting that time will heal (the proverbial tincture of time) so that we could continue with our busy schedules. Serious illness changes all of that. Because most of my patients have multiple sclerosis, I have become aware of how this particular chronic disease changes their sense of time, and I nd that I can be a better advisor for them if I learn how they see their new life with illness. It is often complex; they may experience a variable sense of time, with different time lines running simultaneously like cars on a highway, some moving annoyingly slowly, others dangerously fast. Episodes of symptoms drag on, progression moves quickly, the
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Figure 1. dation.

Sink. Reprinted with permission from the Robert Pope Foun-

memory of a past healthy and vigorous life compresses and fades, and the future seems to shorten. None of these are in chronological time; rather, they exist in a very personal, intensely felt dimension, each with its own characteristic shape and size and speed. When patients ask, How much time do I have, Doc? or Will I be in a wheelchair? time again slows as they wait for the answer. Suddenly, the way they saw time, how time was intricately entwined with their lives and went off in a line forever into the future, was changed forever, as suddenly as if a distant thread was cut. Although physicians are not comfortable with such questions, patients must ask them to reorient life to a new sense of time.

The Physicians Sense of Time As a physician, I am aware that my sense of time in my life has changed as the years have passed. When I began my medical studies, I was in a hurry. The years ahead seemed to stretch on forever, but my studies toward graduation seemed to proceed at a snails pace. The clinical years seemed to go faster, and residency even faster again. By the time I was in general medical practice, it all changed. What was the hurry? Why didnt I spend more time on other things in my studies? Why didnt I take a year off to travel or spend a year in a developing country? During subspecialization later, time seemed more even, linked, and continuous. Now that I am in the last decade of my practice, my sense of the time in medicine has changed again. I have learned
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Figure 2.

Curtain. Reprinted with permission from the Robert Pope Foundation.

to see as my patients see, with life in cycles, seasons, and renewal through my children and my grandchildren. I believe that if physicians contemplate their own perception of time in their lives and experience, it will probably lead to a more sensitive appreciation of how the patients sense of time affects him or her. Certainly the physician who becomes ill will recognize the reality of the patients sense of time and time change. Because I work with patients who have a chronic disease, I have learned to work in a sphere where everything is seen in long periods or in terms of a lifetime but with episodes of sudden change, necessitating repeated adaptation. My patients have taught me to see on a larger landscape and to in turn help them day by day with this broader and more cyclical view. Africa Time During my time in Africa some years ago, I was told repeatedly to learn how to organize my days, my activities, my expectations of others according to Africa time, which meant that things happened when people got around to it, that things happened when they should. Soon I released myself from the yoke of thinking in hourly and half-hourly appoint60
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ments in an electronic palm computer and lived life as it naturally unfolded. I became acutely aware of the difference from my sense of time back home in how my life and my schedule were organized. Ive had the same feeling while on sabbatical, unfettered by much of the time-linked clutter of the average day of an academic physician. I see my patients adapting to a sense of Africa time, with things being done when they feel they should be done, without the yoke of clock or calendar. The Art of Robert Pope Artist Robert Pope said that he had two birthdays, the second being the anniversary of the diagnosis of his cancer; a new and different life began with the advent of a threat that changed all that came before (9). Robert was a young artist who, after undergoing repeated courses of chemotherapy for Hodgkin disease, began a series of more than 90 paintings illustrating the experience of illness. Robert said he realized that work had too dominant a place in his life before his cancer was diagnosed. Other things were now more important, such as savoring the moment, improving relationships with others, taking some responsibility for his own healing to assist the powers of physicians and science,

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listening to music, and thinking about life and other people. Many of Popes paintings depict the element of time in the life of patients and their families. One shows a young man lying in a hospital bed at night, staring at the ceiling, while a stranger is shadowed against the curtain of the next bed. How does the young man perceive time moving as he wonders what the tests that day showed, what tomorrow will bring, and how his life may be changed forever (Figure 2)? Another shows a mother sitting on a hospital waiting room bench under a clock. She is waiting, with a child on each side, one staring off into the distance while another sleeps against the mothers arms. The mother stares ahead, face rigid, waiting for word about her husband (Figure 3). It is not difcult to see the dissociation of chronological time and personal time.

Kairos and Kronos In exploring how life-threatening illness brings one close to the bone of the souls needs, Jungian psychiatrist Jean Shinoda Bolen (10) discussed the two Greek words for time. Kairos refers to that rewarding involvement in life during which we lose the sense of time passing, as we spend time with those we love, work in the garden, or walk in the woods. Kairos is soul satisfying and soul nourishing. Kronos, on the other hand, is living in the linear time of our clocks as we go through our daily schedule of chores and appointments. Many patients who are learning to live with chronic disease or impending death learn to spend more of their lives in kairos. Bolen (10) concludes that there are high achievers and caretakers who

Figure 4. Red Mitten. Reprinted with permission from the Robert Pope Foundation.

never questioned whether they were doing what they really wanted to be doing with their lives, until a life-threatening illness stopped them in their tracks. At that moment, our commitment to kronos lessens and we seek kairos. We yearn for things that make life move more slowly. Fishing, knitting, and listening to music become comforting, as shown by Popes picture of a grandmother on a hospital bed knitting a red mitten for a grandchild; the comfort of feeling connected through coming generations is brought to the surface (Figure 4). We may not be physically present in later years, but we can live on through others whom we touch. Even when things are most boring, most thankless, and most distressing, most would not trade life for the alternative. Woody Allen commented that his life could be summed up by the joke about the two elderly ladies at a seniors vacation resort. One complained about the meals, noting that the meat was like leather, the potatoes dry as cardboard, and the desserts tasteless. Yes, said the other, and it comes in such small portions. Life can be like that. It may sometimes seem difcult and painful, especially as we get older, but it goes all too quickly. The Eternal Braid

Figure 3. Family Waiting. Reprinted with permission from the Robert Pope Foundation.

Saint Augustine said he knew what time was until someone asked him to describe it. Even when pa

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tients are intellectually aware of the accuracy of Newtonian time on their digital watches, they also know that time feels of different duration, depending on their emotions, their sense of well-being or ill health, and their sense of danger or relief. In the preliterate period, time was related to natural events and was more cyclical in form, corresponding to the tides, the rising and setting of the sun, the phases of the moon, and the passing and return of seasons. Patients begin to see time cyclically when the future is seen to be nite. Time and life is seen in terms of recurring 24-hour days, the rising sun, the changing light in the day, the regular appearance of hospital staff, arrival of meals, the lengthening shadows of the day, lights out, sleep, only to awake to the new light, the arrival of cheerful staff, and the appearance of a tray. These cycles are a series of small recurring events, ignored in earlier, busier, healthier times but now meaningful. Small things become important: the clouds slipping over the horizon, the birds itting from tree to tree, the complex beauty of Bach.

In the Bible, there is a well-known passage that begins, To every thing there is a season, and a time to every purpose under the heaven. When illness alters our health, our life, and our sense of ourselves, the realization that time has a quality as well as a quantity is apparent. A common metaphor for life is the journey. In literature, the journey converts linear time into the space and landscape on which it occurs. Illness, especially terminal illness, makes us all contemplate and re-evaluate the landscape of that journey and the last pages of the story.
From Dalhousie Medical School, Halifax, Nova Scotia, Canada. Acknowledgments: The author thanks the Robert Pope Foundation for permission to publish the paintings of Robert Pope in this issue. He also thanks his wife, Janet, who has added many helpful comments and editing advice but who thinks it laughable that someone who is never on time would write on this subject. Requests for Reprints: T. Jock Murray, MD, Dalhousie Medical School, Sir Charles Tupper Medical Building, Halifax, Nova Scotia B3H 4H7, Canada; jock.murray@dal.ca. For reprint orders in quantities exceeding 100, please contact Barbara Hudson, Reprints Coordinator; phone, 215-351-2657; e-mail, bhudson@mail .acponline.org.

Summing Up: Metaphors and Meaning Sir Arthur Eddington (11) talked of the arrow of time, moving relentlessly forward. To the physicist, however, time could just as easily be understood as moving backward, as it did in Martin Amiss novel Times Arrow (12), which chronicles the life of a physician in reverse, so that we come to understand conversations and events in his life as the dialogue and action moves backward. When patients become ill, they may begin to see time running backward as well as forward, with life spread out as on a landscape. They may think of where they have been and where they came from, of their families and relationships, and of what came before and what comes after. They think of their grandparents as well as their grandchildren. References
1. Priestley JB. Man and Time. London: Aldus Books; 1964. 2. Capella B, Gentile JR, Juliano DB. Time estimation by hyperactive and normal children. Percept Mot Skills. 1977;44:787-90. 3. Jantsch E. The Self-Organizing Universe: Scientic and Human Implications of the Emerging Paradigm of Evolution. New York: Pergamon; 1980:97. 4. Dossey L. Space, Time, and Medicine. Boulder, CO: Shambhala; 1982. 5. Shallis M. On Time: An Investigation into Scientic Knowledge and Human Experience. New York: Schocken Books; 1983. 6. McLuhan M. Understanding Media: The Extensions of Man. London: Routledge and Kegan Paul; 1964. 7. Szamosi G. The Origin of Time: How Medieval Musicians Invented the Fourth Dimension. The Sciences. 1986; 33-9. 8. Hofstadter DR. Godel, Escher, Bach: An Eternal Golden Braid. Sussex: Har vester; 1979. 9. Pope R. Illness and Healing: Images of Cancer. Hantsport, Nova Scotia: Lancelot Pr; 1991. 10. Bolen JS. Close to the Bone. New York: Simon and Schuster; 1996:86-8. 11. Eddington AS. The Mathematical Theory of Relativity. Cambridge, UK: Cambridge Univ Pr; 1957:23-5. 12. Amis M. Times Arrow. Toronto: Penguin Books; 1998. 13. Ecclesiastes 3:1. King James Version.

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