Miracles We Have Seen

by Harley Rotbart

  Then one night everything began to change. I have played that call over in my mind a thousand times and it all comes rushing back as I write this.

  “I am not sure, but I see something red and blurry. I think it is the numbers on my alarm clock.”

  Two days later she came to the office. I loved calling out her name myself in the waiting room and watching her little boy hop up and run to hug me. When I saw her that day she was completely different, all dressed up, makeup on. I should have known by the way she walked into the examination room that things had changed.

  I checked her vision, first to light, then with the letter “E” on a piece of paper a foot away. She had never been able to see that in the entire time I had known her.

  “That is the letter ‘E’, upside down. But the one down the hall (which was twenty feet away) is normal.” She then ripped off the letters of the eye chart all the way down to 20/60 vision—not quite perfect, but a huge improvement!

  I was stunned and my office staff was momentarily silent. Then a huge roar went up, followed by cheers and laughter. She smiled at me and I could not help the tears that rolled down my face. Nurses and techs hugged her.

  When my turn for a hug came she said, “Who are you? You cannot be Dr. Buys.” She had never seen me before; I guess I look different than I sound.

  After that it was easy from the eye standpoint. She maintained her vision, even got a limited driver’s license, and went back to work. Sometimes before an exam she would pop out her glass eye, rub it off, and put it back in. “That should help,” she would say with a smile.

  But tragically, her diabetes remained aggressive and picked her body parts off one at a time. First her legs, then her kidneys, then her heart. Just before the end I went to see her in the hospital. Several years had passed and she had gratefully and joyfully watched her son grow up, maintaining excellent vision even though every other organ in her body failed.

  Kim’s miraculous result sustained me through the years whenever I faced grim problems in other patients. When I reflect on my practice and my patients, she is always the first out of the box; my first patient continues to be my most poignant clinical memory. Even during the difficult times, when her diabetes ravaged her, that warm, happy, funny girl I met all those years ago was still there through it all, for her son and her family.

  And for me, she remains forever so.

  Date of event: 1979

  Thirty-Six

  Michael D. Lockshin, MD

  Thirty-six years ago, I did not yet understand how special Michelle was. At that time she was a child, just thirteen years old. I was young, too, in a professional sense, since I was a new attending (supervising) physician. Trained in adult rheumatology (the specialty caring for patients with arthritis, autoimmune disorders, and other diseases of the joints and muscles), I did consultations on children only because, at that time, our hospital did not yet have pediatric rheumatologists. I didn’t like to consult on children. They tended to scream when I entered their rooms. Also, as a new father, I felt personal anguish when I saw an ill child.

  But Michelle was different. She turned the doctor-patient role around, immediately putting me at ease, laughing as her arms and legs would suddenly and uncontrollably twist and jerk, thinking her illness funny. “My body is controlled by ghosts,” she giggled. I, the dour consultant, laughed with her. She had a nervous system disorder called chorea that caused involuntary muscle movements. Her chorea, in turn, was caused by systemic lupus erythematosus (“lupus”), a debilitating autoimmune disease where a patient’s immune system attacks her own body.

  My consultation finished, I made a recommendation to her pediatrician. He disagreed with me, leading to a kind of debate that involved Michelle’s parents. Our different opinions so discomfited the parents that they took Michelle to another rheumatologist elsewhere in town. It was an amicable transition, since he was a colleague and friend, and also because he agreed with my plan and not her pediatrician’s. Michelle’s parents, the new doctor, and I were all active in a lupus advocacy group, so we saw one another often, and thus I watched Michelle grow. Her doctor also gave me clinical updates from time to time.

  Michelle did well with treatment. She had an easy adolescence, graduated from college, enjoyed a romance or two, traveled, and began a creative job with a drama group. She lived a life that was not dictated by her illness.

  Unfortunately, a few years later her disease caught up with her with a venge-ance. She developed inflammation in her kidneys, then had a heart attack at age twenty-eight, coronary bypass surgery, and a second heart attack five years after that. It was then that I first began to realize how special she really was.

  This is what happened. After the second heart attack Michelle developed heart failure, from which she seemed to recover. She asked her other doctor if she was well enough to attend a family event for which she would have to travel from New York to the West Coast. He said yes. She went.

  A few days later telephone calls came, four in rapid succession, each more urgent than the last. The first came from Michelle’s father, the others from an intensive care specialist, a cardiologist, and a kidney specialist—I forget the exact sequence—all in that Western town. Michelle was in an intensive care unit (ICU) there, desperately ill. The doctors described the problem and asked me how I would treat her lupus. Her parents asked if I would transfer her to New York. They thought her other doctor had given dangerously bad advice and wanted me to assume her care.

  I made the necessary arrangements, and then waited for our ICU to call to tell me that she had arrived.

  * * *

  This is a Talmudic tale. God is so angry at the wickedness of men that he decides to destroy all mankind. But he reconsiders, deciding not do so for this reason: at any one time there exist thirty-six people on earth who are so righteous that he will not destroy them. To spare just these thirty-six righteous ones, God forgives all the others. According to the tale, the number is magical. There are always thirty-six such people on earth. They are called, in Hebrew, the lamed vav (thirty-six) tzadikim (holy ones). No one, not the tzadikim nor anyone else, knows who they are.

  Or almost no one.

  There are two possible ways by which one might recognize a holy one, a tzadik. The first is through intuition: you see someone do or say something so extraordinarily good that you intuit from the action—you can never know for certain—that the person is a tzadik. The second way is that you sense (by which of your five senses, or if by a sixth sense, I do not know) the brief flight of angels that escorts a tzadik to heaven when the tzadik dies.

  There is one remaining part of the tale. The brief moment between a tzadik’s death and his or her arrival in heaven is the only time at which there are only thirty-five tzadikim on earth. The instant the deceased tzadik enters heaven, God appoints a new one, and once again there are thirty-six.

  * * *

  Fifteen years have passed since the day that Michelle flew back to us and to our ICU. I am still a doctor, not so young now. In my long career, though I have met impressive and powerful people, only once did I think I might have met a tzadik. That was the evening Michelle came to our ICU.

  I saw there a young woman, weakened by severe illness, exhausted after a transcontinental flight, nearly completely hidden by dialysis tubes and arterial lines and a breathing mask tightly affixed to her bloated face. Her eyes were drawn; she was much more ill than I had ever seen her before. Though her eyes were closed, she did not sleep. She opened her eyes and gazed hazily at me as I entered the room. Every doctor knows the look that I describe.

  Motioning me close, she whispered, “Are my parents okay? They must be so frightened.”

  Near death, exhausted, broken by lifelong disease, yet the first thing she says is, “Are my parents okay?” Her main concern at this most dire moment in her life was the well-being of her parents? How can anyone so ill think t
hat way? How beyond selfless is it possible to be?

  Many things happened to Michelle over the next decade and a half. She had more dialysis; a kidney transplant; abnormal heart rhythms requiring an implanted defibrillator that restarted her heart from time to time when it stopped beating; episodes of bone marrow failure; recurrent heart failure; inflammation of her pancreas; fracture of the vertebrae in her neck requiring surgical fusion; a period of six hospitalizations in six months for medication adjustment. As if that was not enough, there were also conversations and consultations about her having yet another kidney transplant and then a heart transplant.

  As she did at thirteen when I first met her, Michelle laughed at the indignities her bad health had caused, at the ghosts inside of her. When she felt well, she beamed as she talked to me about the play she and her boyfriend had produced. She looked and felt beautiful in her elegant gown as she passionately spoke at a lupus fundraiser each year. She appeared in educational videos on behalf of the S.L.E. Lupus Foundation/Lupus Research Institute and served on their committees. She was a tireless advocate for others with her devastating disease. She was excited to think of a future post-transplant day. After all she had been through, and after all these years, Michelle still made me laugh.

  * * *

  There came then, of course, the last telephone call.

  Michelle collapsed at home, her father said. The defibrillator in her heart fired but to no avail. The ambulance with its emergency medical technicians came but were unable to revive her. I had known Michelle for thirty-six years. Though I had laughed with her just a week or two before, I was terribly saddened but not surprised by the call.

  Like most doctors do, I suppose, I thought about Michelle for all that night—and for many more nights and years afterward. I thought about the many times we had chatted, in my office or beside her hospital bed, about her worries for her parents, and sometimes about her worries for a problem of a friend. I thought about her altruism and her advocacy. How was it possible for anyone to be so selfless, let alone someone whose life was so filled with physical pain and challenges? Fifteen years ago, standing at Michelle’s bedside in the ICU, I had an intuition that I could not put into words. The night her father called, I did not sense a flight of angels. The Talmudic tale may or may not be true—I have no way to verify. But I do believe that, for a very brief moment as I spoke to her father that dreadful night, there were only thirty-five tzadikim in the world.

  12

  Back to the Beginning

  All of the physicians contributing the poignant and inspirational essays in this book began their careers as medical students: unsure, insecure, and frightened. The transition from student to professional in any career requires a significant effort on the part of the trainee as well as by those doing the training. But because of the high stakes involved in medical careers, with patients’ lives and families’ strength and stability on the line, a successful transition is all the more important.

  This final essay, written by one of our nation’s leading medical educators, describes the miraculous transformation to professionalism that all physicians must undergo if they are to be privileged to experience, and contribute to, the types of miracles described in all of the other essays in this book.

  Date of event: 1980–2015

  A Doctor’s Work:

  The Miracle of Professional Transformation

  Carol L. Storey-Johnson, MD

  I am a medical educator, dedicating my career to the training and growth of future physicians. In that context, it is my responsibility and privilege to help turn trainees into physicians, in every sense of that word. Effecting such a transformation is vital for the future of health care. Without it, physicians will be no different than technicians, computers, or robots, and perhaps less compassionate than any of those.

  The diversity of students now entering medical school is truly a wonderful thing to behold. Nearly half of the members of entering medical school classes are women, and, while the task is not easy, progress is also being made in ethnic and cultural diversity. I have often pondered the assumptions we make about these young future physicians as they enter our august halls of learning and begin their path to becoming successful and outstanding physicians and scientists. There is so much for them to learn and, it seems, so little time to learn it all. They not only have to acquire an extensive fund of knowledge to successfully treat patients, but they must also learn how to act and comport themselves as physicians. My observation has been that this behavioral transformation into the professional role is often as, or even more, challenging for them as learning the science of medicine. I have always been intrigued by how our students learn this. How do they transform their personal selves to become professionals, and how can we help them with that task?

  Times have changed. I recall that, during my own medical training, I was expected to take full responsibility for my actions, learning, and professional growth. The specific route to “turning into a doctor” was not taught in classroom sessions at that time. For the most part we learned by observing older role models (senior doctors) and trainees close to us in years who supervised our day-to-day activities. I remember that “pulling yourself up by your bootstraps” was clearly the work ethic of the day. Help would be available if I asked, but it was more generously offered if I demonstrated I could almost do it all myself. I was expected to go out and learn the various disciplines in medicine, with that phrase that educators now find frightful, “See one, do one, teach one” always in the back of my mind. You had to learn new things as soon as possible—and be fully ready for the next event. Requirements for further training and career advancement and recognition were that you did the right thing, as best you could, and you didn’t hide anything. If all that went well, you were promoted to the next training level. Somehow, it seemed a given that your personal and professional integrity were always up front, on the line, and requiring more and more polish and effort over time. And you gave of yourself and your time unselfishly in your pursuit of the highest quality of patient care. So much of what was expected of us for professional growth in those days was passively conveyed.

  Today, the transformation to a professional physician is more directly and explicitly addressed in the curriculum, usually in the form of “doctoring courses.” When I teach new students about their professional growth, I often refer to the writings of Frederic Hafferty, PhD, among others, who wrote about the ways in which we learn to comport ourselves as physicians within our learning environments. In one eloquent and oft-quoted article, Hafferty wrote about three curricula learners face every day: the explicit curriculum (the goals and information we teach the learners in our classrooms); the implicit curriculum (an informal and highly interpersonal curriculum of “dos and don’ts” that learners encounter on the floors of our teaching hospitals and medical college corridors); and the hidden curriculum (those messages that institutions send almost subliminally when we examine, for example, what the institutions value, who they reward, and how their policies are written).

  Hafferty also noted that these three curricula are not always aligned. Disturbingly, the implicit and hidden curricula are extremely powerful and can overshadow the explicit teaching we do. For example, what we teach in our classrooms is not what students may see in our teaching arenas—students may witness disrespect among colleagues, or lack of alacrity when caring for certain patient populations. These arise more frequently than we would like to admit if we were being truthful, as evidenced by the accounts our trainees report routinely to their teachers during debriefings of their clinical and teaching experiences. It is what we see of the actions of others who are more senior than us (and evaluating us!), and our immediate day-to-day role models, that has great impact on how we behave in similar situations, and as future physicians.

  As I look back on my own career, I consider myself to be a fortunate beneficiary of these three curricula. I had excellent role
models; doctors whose behaviors I could emulate without a second thought, those who were re-

  spected by all and held in highest regard. In general, the three curricula I encountered were aligned and pretty much in sync. But what if I had not been so fortunate? What if I encountered physicians and scientists willing to take shortcuts or misrepresent information? What if I personally came from a social and cultural environment where there was considerable variation in the levels of personal integrity that were expected? What if shortcuts were nearly always “okay” and the norm was just “Give me what I need” to perform or get to the next step? The competition and practices regularly faced in the business world are examples that come to mind—a haunting and disturbing thought as many physician practices have, of financial necessity, become businesses first, places of healing second.

  When exams came around during my own days in training, I always equated my performance on a test with the development of an excellent knowledge base, one that would serve my patients exceptionally well. I was less assured of how to do things outside the classroom as I started internship training, but gradually this got better, easier, and I had excellent role models to see in action. I put forth my very best effort because I was certain that it would make me a better doctor. I had great faith that learning in depth, reading in depth, and being in command of as many potential ramifications of medical decisions as possible would prepare me well.

  But in recent years, I realized that more and more students do not look at this as I did. I’ve often wondered what would have become of me as a physician if I had not had my underlying personal driving force or ambition to be deeply informed. After all, in this digital age, there are so many ways to come by information. Why should I have to read the entire chapter of the text? Wouldn’t the synopsis be sufficient and get me to the answer more quickly? What if I had no role models in my family of individuals who purposely chose the longer, more challenging route to understanding material in depth? What would my professional transformation have been like then?