Bernard Lown, MD
Doctors pride themselves on practicing evidence-based medicine. That is the simplest part of it. Far more difficult is practicing personalized medicine. Still more difficult is engaging in a practice that bonds two human beings. The proof of the miraculous comes when a patient permits a doctor to look deep into her eyes.
Patricia eventually did, but only after a decade of jousting. She was not demanding, merely exerting the mysterious power of the persistent powerless, the constant drip of water that splits granite. She was frequently provoking, nearly reaching the limits of my patience. Several times Patricia dismissed me as her doctor, rarely followed my advice, and in many sessions remained mute, yet our relation flourished for nearly 30 years.
Once or twice a year she came trekking from Pennsylvania to Boston, a round trip of 16 hours. During the first decade, rather than face me, Patricia sat sideways looking at a diploma-covered wall and engaged in a soliloquy with a seemingly absent doctor. While being examined, her eyes were shut tight as though glimpsing at me would transform her, like Lot’s wife, into a pillar of salt.
I recall a sultry day in July. Temperatures were in the 90s. The drive from Pennsylvania must have been exhausting. Yet she looked cool and relaxed. At 5’9″ and 108 pounds, she was gawky and flat-chested, with prominent bones and a Nefertiti neck supporting a classically sculpted head covered with disheveled black hair streaked with grey. As usual, the sad and distant look in her green eyes was accented by big dabs of mascara. Her movements were indolent and deliberate. I recalled an image. It was from Romain Rolland’s novel Jean-Christophe. The hero is in his early teens when he spies Sabine, a woman in her 30s, lazily dressing in front of her window. She is slow-moving, languorous, not caring who stares at her lovely nude body.
The very first consultation set the tone. At the time she was in her late 20s and seeking a second opinion whether to have her mitral valve replaced with a prosthesis. I began my note with the words, “This lady is deeply troubled.” Her chief complaint was “heart flops.” But neither the medical history, physical examination, nor laboratory findings supported a diagnosis of heart disease. While the mitral valve leaflets were slightly prolapsed, the abnormality was trivial and best ignored. Why the insistence on self-injury? How did she get such an oddball idea? How did she happen to come to me?
It took many visits for those questions to be answered. Following her only pregnancy, she had had a postpartum psychosis. Thereafter, she suffered severe recurring depression with suicidal ideation that occasioned multiple admissions to psychiatric institutions where she received shock therapy and a panoply of psychotropic drugs. At one such hospitalization a heart murmur was detected, which led to the diagnosis of mitral valve prolapse.* This occasioned an extensive cardiac work-up, including coronary angiography. No abnormalities were discovered. However, she fixated on the “diseased ” mitral valve. Morbid curiosity sent her to libraries, where she learned about her condition as well as the identities of the best-reputed cardiovascular practitioners in the United States. A search of the medical literature filled her disturbed brain with a host of phobias. She learned that people with MVP are likely to be afflicted with arrhythmias that predispose to sudden cardiac death. This rang a bell, as three members of her family had died suddenly: her mother at 55, one brother at 36, and another at 32.
Physicians did not take her cardiac complaints seriously; nevertheless, they did not resist being seduced by her fears. The greater her anxiety, the more comprehensive the medical work-up. She was subjected repeatedly to a host of invasive procedures, including cardiac catheterization and coronary artery angiography. The normality of the results of numerous investigations did not assuage her anxieties. On the contrary, they merely bellowed the embers of her dread. The language of physicians was circumspect and left her with doubts even when it should have reassured. She harbored only one wish, to be rid as quickly as possible of the terrible mitral valve that she deemed a threat to survival. She shopped extensively for a medical opinion congruent with her wish and saw numerous cardiologists and cardiac surgeons.
During the first visit to my clinic, Patricia indicated that she was scheduled to have the mitral valve replaced by one of America’s leading heart surgeons, Dr. C. D. in Texas. I was certain she was fabricating. I told her that no distinguished doctor would replace a healthy heart valve and reach such a conclusion by mail. Whereupon Patricia deposited on my desk the correspondence between herself and the surgeon. A letter addressed to her and signed by the famous heart surgeon stated in part: “Your case sounds typical of patients with the mitral valve prolapse. This has been a condition in which I have been greatly interested during the past few years. In fact we are the only group who has performed surgical correction of the mitral prolapse with excellent relief of the symptoms. I would like very much to have you as a patient in this hospital.” She was scheduled to be hospitalized for the operation on April 9, 1979.
I reread the letter several times. It seemed far more demented than the patient seeking consultation. Instead of reasoning, I burst into a rage. “What the Texas surgeon suggests is insane. Worse, it is criminal. You will do no such thing! I will not permit such an assault against a human being under the guise of medical treatment. He never examined you. He never even laid eyes on you. How can you trust such a recommendation? Only a mad person would fall for such garbage, and you are not mad!” During the entire visit she had averted her gaze. After my outburst she cast furtive glances. This was her way of acknowledging that she was listening and perhaps even hearing.
Some months later I received a letter from Patricia complaining that I confused her the same way as the other doctors she had previously seen. She wrote, “I have read that you are one of the best cardiologists in the U.S. . . . but I don’t feel that I understand my condition any better than I did before I came to you, which is the way it always ends, leaving things up in the air.” She concluded that she would be going to Texas because Dr C. D. “is the only doctor that I encountered who promised me a cure.”
I immediately telephoned Patricia and engaged in a 20-minute emotional harangue pleading that she do nothing of the kind. “You must promise me never to consider surgery which offers zero likelihood of benefit and a large probability of harming you.” Shortly thereafter I received another missive complaining that she wished I would focus on her heart, not on her psychological state. Ending the note, “Since I have first seen you I’ve not even looked for another cardiologist, and for me that’s a record.”
At her next visit, I learned that she had quit seeing the psychiatrist and discontinued anti-depressive and anti-psychotic drugs. Now, three years into our relationship, she did not complain of palpitation and was not fixated on her heart. Still, over the ensuing decade she’d occasionally pose the question, “Maybe I should go to Houston?” When she did, her downcast face would momentarily look up as if to gauge whether I had been provoked.
With each visit I learned a trifle more about this secretive and involuted woman. Her life was cloistered, monotonous, each day identical to every other. Patricia had an aversion to most food. Her daily fare consisted of a single meal of some fruit and mostly vegetables. Though thin as a rail, she regarded herself as fat. Her days were spent watching soaps and baseball games or reading “trashy” romances. She regarded her husband as a hostile, intrusive stranger whom she either ignored or argued with cantankerously about trivia. She could not recall the last time they had sex. Patricia welcomed his being a teamster because he was rarely at home. She had a teenage son who was emotionally disturbed.
One might have anticipated that living a reclusive existence in such a bleak cultural pit, and lacking even a single friend, Patricia would be dull witted. On the contrary, she was knowledgeable about the world, informed about contemporary events, and expressed herself succinctly and well. Having invented an imaginary surround of tranquility, she lived in her own fantasy world. She admitted at times talking to herself. This fairyland was private and fragile. She permitted no intrusions. The mere sharing would make the imaginary refuge vanish, perhaps forever. Being in her presence I felt an all-consuming sadness. She admitted contemplating suicide. I came to appreciate that this was an intellectual response to a vacuous existence rather than nurtured by psychological depression.
At the very first visit I outlined a minimalist program that she add milk and fish to her meager fare, have a regular exercise program, and aim to gain a modest five pounds. I urged her to get out of the house, obtain a part-time job, perhaps travel for a change of scene, cultivate a friend. I also advised psychiatric counseling; some of her problems were beyond my training and competence.
She only responded about psychiatry and with some vehemence. She had nightmares merely thinking of all the harm psychiatrists had inflicted on her — especially with the shock treatments. Never, never would she see one. Then out of the clear, a whispered plea: “When will I know I am cured?”
“It depends on you, Patricia, when you no longer want to have heart surgery. When will that happen?”
“I really don’t know,” she reflected.
Then, matter of factly: “Perhaps it would be best to end it all.” Hurting and offended, I stammered, “Would you mind if I call you?” Over the next several months I telephoned her regularly. She never talked of suicide again.
There was no progress in connecting with other people. She did try to befriend one woman. Soon Patricia was fed up. “Like everyone else she does not listen. Nobody likes to listen. They merely like to tell you about themselves. I tried, but she likes to talk too much, like my sister, who only suffers whenever I say something. Further, I can’t trust them. No one keeps a secret.” It took several years to divine what possible secrets were dangerous to share. It related to her having been institutionalized and receiving shock therapy. “I’d rather die than anyone know that I was crazy.” When Patricia talked about such forbidden subjects, it came as an animated outburst and left her breathless, as though she had climbed the last few yards of an Himalayan peak, exhausting the sparse remaining atoms of oxygen.
She sent me occasional postcards, mostly with questions or complaints about my inadequate doctoring. Rarely, they were informative and ended with a compliment. In a colorful one from coastal California: “You told me to go to the beach, so here I am in California. . . . See you when I am 112 pounds.” In late 1985, seven years after her first visit , I received a warm note, “I want to congratulate you on winning the Nobel Prize. Now I know why I stopped going to cardiologists after I met you.”
At times she shifted into a wistful dream state as she talked of gaining independence from her husband, at last to be free. I was led to believe that he was an ogre who abused her. Otherwise why the ever-bubbling cauldron of hostility? Yet for nearly three decades he took two days off from work every year to drive her to and from consultations in Boston. We spoke only twice during all the time that Patricia was my patient. Once, unannounced, he dropped furtively into my office when she was in the examining room. He was soft-spoken and gentle-sounding, conveying deep solicitude for his troubled wife. “Please don’t tell her that we spoke; she will be very upset. How is she doing?” When I assured him that she was doing well, he expressed gratitude and relief. Then he darted out. The second occasion was a telephone call. “I know, Doctor, that you are very busy. Can I ask you two brief questions? The report of her last visit states that Patty has mitral insufficiency. Is that the same as mitral valve prolapse?” I affirmed those were the same. “Then my second question: Has Patty’s heart condition changed over the 10 years that you have followed her?” I indicated that her condition remained unaltered. With a sigh of relief, “Thank you, Doctor, I am sorry to have bothered you.”
When I saw her in June 1989, nothing seemed to have changed. Perhaps I was expecting too much. My disappointment was transparent. Patricia, like a seismograph sensitive to the vicissitudes of my mood, reacted with hostility. This enhanced my impatience. It was a no-win situation. What I deemed mini-accomplishments she regarded as big steps forward. Still over several years she had not talked of valve replacement; palpitation was no longer a complaint. She had not traipsed to an EW or had a single hospitalization in a decade. She had gained five pounds, held on to a part-time job, and even looked at me occasionally.
After the physical exam and some labs, I summarized the essentials, concluding with the ritualized statement that her heart was OK. She wondered out loud why she needed to come back. I had no good answer other than, “Of course you don’t have to.” Her face was sphinx-like, without a speck of emotion. Yet she projected hostility. As she was about to leave, I experienced a sense of embracing disquiet. Without thinking, I said, “Will see you in December,” a six-month interval instead of the annual visit. She seemed not to have heard as she marched out.
A few weeks later I received an angry letter in which I was accused of deception if not outright lies. As proof, “If my heart is so good, why do you insist I come back in six months rather than a year? Do you think it is easy or cheap for me to travel from Pennsylvania?” I responded forthrightly that my concern with her psychological well-being prompted the suggested revisit within six months.
She showed up for the December appointment. For the first time I had a postdoctoral fellow participate. Pierre was a born physician with great sensitivity and compassion. Patricia was glum, uncommunicative, and evasive during the near hour he spent with her. Not once did she look at him.
Having Pierre in the room helped in connecting with her. She was more likely to believe what I shared with a colleague. In fact, I could talk to her through him. I began with a rhetorical question. “How long do you intend to imprison yourself?” I enhance the metaphor, “Why do you remain caged?”
Suddenly she appeared transfixed with interest, though without uttering a word. She looked intently at me with a quizzical expression conveyed by parted lips and widened eyelids.
I addressed Pierre. “In medieval times it was leprosy; in the 19th century it was mental illness; now it is AIDS. All these conditions quarantined the victim as a societal outcast. But in the case of Patricia she is both jail warden and prisoner. The keys to her cell are in her own hands. Why do you think she stays in?”
She responded, “It isn’t so bad. One gets used to everything.” And then she contradicted herself. With a slightly raised voice she continued, “This ain’t true. A bird never acclimates to a cage. At the first opportunity it flies away. A human being dreams of freedom. Look at the millions marching in Eastern Europe.” I was taken aback by the cogency of her answer and her being attuned to current events.
Pierre asked, “Why do you think she prefers a jail cell to being free? “
Patricia’s head tilted slightly forward, eagerly awaiting my response. “Because she can’t tolerate being rejected once again. To have friends one has to share intimacies. She is certain that if she tells someone about her having received shock therapy, they will walk away and broadcast to the world that she was and may still be crazy. The hurt of solitary confinement is less than facing another betrayal.” Did I detect a moistening of eye? No, it was merely a ray of late afternoon sunlight seeping through a venetian blind, shimmering on her face.
It was now September 1992, 14 years since her first visit. She was the last patient of the day. I was filled with fatigue. There was something different about her. She didn’t look away. She was without eye-shadow, rouge, lipstick, or nail polish. There was an attractive homeliness about her. She was beginning to look her age of around mid-40s. Another new feature was that she smiled readily.
“Why the smile?”
“You told me I looked angry and urged me to smile. Whenever I am here, I smile.”
There is silence. “If I don’t say a word, you don’t say a word,” I said. No response as she fixatedly stared ahead as if looking through walls, fixated on a distant forlorn nowhere.
“What is it that keeps you looking ahead?”
“My dog. I mean my son and my dog.”
Her son was very much like her. He got frequent panic attacks, for which he took Xanax. Then I posed a question that troubled me, as though her response was the litmus test of her progress.
“Do you still think about a valve operation?”
Without hesitation: “Of course. I think someday I will have it done.”
I was shocked and disappointed. We had not spoken of this in many years.
“Why do you come here then?”
She responded, “I come for you to tell me what is right or wrong.”
Her complaints had lessened over the years. She was no longer bothered by her husband. She stated, “We coexist.” I asked, “The way the Soviets and Americans did when they were both armed to the teeth with nuclear weapons?” “Yes, absolutely.” She burst into laughter at the analogy. “I am learning to accept myself as I am. I no longer get outraged at every real or imagined wrong.” She looked at me and was not afraid of my looking back. She communicated a sense of relaxation, some personal satisfaction. She walked four miles a day, 12 minutes a mile. Nobody could keep up with her.
It was a sweltering day in July 2005. In the more than a quarter century of visits, we engaged in two parallel monologues. We rarely intertwined in a meaningful discourse. Today was different. She was open, looking at me, unafraid to meet a human gaze. When I asked her, “What bothers you most?” The response had the quality of pistol-shot directness. “Life,” she enunciated, as though the word was choking her. Life: for the few, a blessing; for the majority, the likes of Patricia, a curse to be endured and to be gotten over quickly. One boring day of sameness merged with an irrelevant other. The rhythm of her days was unalterable. She listened to baseball on the radio, took her intense walk, went marketing for food, cleaned the house.
I told her that she had an intelligent mind. “How come you let it go to waste?”
“How do I cultivate it?” she inquired.
“Read books rather than junk magazines. You will gain virtual friends whose closeness will be determined by the vigor of your imagination. They will not talk back, they will not demean you, they will not gossip or betray you.”
Patricia related that the previous month her priest had loaned her a book about Dorothy Day, the Catholic radical activist for the poor and homeless. I urged her also to turn to Chekhov’s short stories. I described how Chekhov, when I was a young boy, ignited my love of literature. She could not wait to get home and launch into reading. A new life opened. She was out of the box. For how long? God only knew, but there was an edge of excitement.
It was our last visit, as I was retiring within months after 55 years in clinical practice. The first thing I asked was whether she had read the Dorothy Day book. She had just glimpsed at the book but had not read it. Why not? She didn’t trust the Catholic Church anymore. She believed it was full of falsehood and deception.
A final plea. “There must be someone you can trust, who will not demean or take advantage of a fellow human being. Someone who may even come to like you. After all, you have intelligence, deep integrity, and a spirit honed to a fine radiance by the loneliness and suffering that has been your lot.” At this point, she grew quite animated and began to talk: She was not really concerned with words, but with deeds. People jabbered away and didn’t follow through. She seemed to be moving back to square one.
Then an abrupt shifting of gears. “Was the Russian writer you mentioned Chekhov? I’ll look him up.” We have now talked about books for five years. I appeared puzzled. She responded, “I’m strange. I do have a mental problem. My mental problem, bad as it is, is worse when I think of being with others.” She leaned forward and asked, “Do you think I’m strange?”
“To me you’re not strange, you’re just different,” I responded.
I wondered whether in the past three decades she had seen other doctors. “Before, I saw a different doctor every week.” She looked at newspapers and medical magazines finding out who were the best heart doctors. “No one was interested in me. Each wanted me to have tests. Then I found your name. You understood me. After that, I didn’t need any second opinions, though I didn’t trust you at the beginning.” She meant during the first 10 years.
When I told her that I was retiring, she tightened her hands into fists and covered both eyes as though to make invisible the unthinkable. The words were a ululating moan of “oh no.” She looked desolate and clammed up into a bottomless silence as I uttered inanities. I assured her that I would see her one more time. This was a speck of hope.
If I failed to rehabilitate this woman, at least I helped contain harm. Doctors reduce patients to their illness and universalize about disease through statistics. Patricia taught me that the individual patient is invariably an exception to the statistic. She taught me much else. She helped me forge a clearer perspective on the meaning of living.
Very few are blessed with extraordinary inborn aptitudes. They make unique historical contributions when these personal gifts mesh with the zeitgeist of their era. Most of us can engage in only small good deeds. We should derive comfort from the fact that the forward flow of history and the emergence of a more empathic world derives largely from the minuscule good deeds done by multitudes of ordinary people.
*Mitral Valve Prolapse is an anomaly of the heart in which valve leaflets separating the two left side chambers do not close properly. When mild, as usually the case, it does not cause symptoms nor affect life expectancy.