STELLA

Sitting at my place at the kitchen table, I heard the soft creaking of her rollator as it glided down the hallway and into sight, my lovely grandmother at the helm. Her eyes were bright, her smile wide as she answered my greeting in disbelief that I had heard her. But I had been waiting for that sound since early morning, waiting for the time we would spend together that day. Once she had settled into her chair facing the window, oxygen tubing detangled, newspaper open for her on the placemat, we both settled in, opening our respective sections of the paper, sitting in comforting silence and watching the birds fly to and from the tree outside the window. Soon I’d brew the coffee and fix us bowls of cereal, my grandmother’s always alongside a banana. We would be there for several hours each morning, facing each other, doing word puzzles in the paper or on our tablets, and chiming in periodically with a word, or a song, in my case. Her presence was calming, maternal, like an embrace, and I felt at peace.

Joy “Elaine” Ferrell, my grandmother, was a person of irreplaceable joy, love, and generosity. She exuded kindness. To be in her arms was to find comfort and peace and unconditional love. She was as sweet as the treats she used to bake. And she was stubborn, doing things her own way, holding steady. No one ever uttered a negative word about her.

So when she died, on September 27, 2019 at age 94, I found myself in a vacuum. What would I do without the life-giving love and encouragement my grandmother gave me? How could I go on from here?

She had been sick for a long time, each year getting progressively more debilitated and ending up in the hospital multiple times to control her congestive heart failure. I had lived with her for the last three years of her life, and I saw her life getting harder and more isolated, especially when she could not leave the house anymore. Through all of this she maintained an inexplicably positive attitude. The only worry with respect to her health that she expressed was the condition of her hairdo. When it came to pain and discomfort, she was strong and stoic.

Her death came not as a surprise, as I had seen her health decline over the time I lived with her, but definitely as a shock to the system. Hospitalized again for congestive heart failure, she just could not regain her breath. Strapped to a bipap machine, she held on to life with all she had, just like my other grandmother, Estelle, who passed away in 2011. But eventually, after being transferred to hospice, she decided to have the breathing machine removed. Surrounded by family at the hospice location, my grandmother, I’m sure, felt the comfort she needed to let go. I was not there. I had moved back to Virginia to start school, and I just couldn’t get up to Pennsylvania in time. But thanks to the help of my cousins, I was able to make a video call and say goodbye. During the call she asked if I was tired. I said yes and asked her the same question. She replied, “Yes. I’m dead tired.”

“I love you” were the last words we exchanged.

So here I am today, on the day of her birth, with a bowl of bran flakes, the requisite banana, and a cup of coffee (also requisite), thinking about, reflecting on, my grandma’s life and death. Sometimes I despair because I know that the vacuum her life occupied can never be filled. Every little thing reminds me of her, from the elephant figurines she gave me, to the cereals in my pantry, to the portraits I made of her and my grandfather so many years ago. These things bring on a sense of longing, but also comfort. For the memory of my beloved grandmother, Elaine, brings such warmth and such hope to the spirit. I know that she is with me still, and that my loneliness without her can never diminish her enduring presence in my life.

In celebration of your 95th birthday, Mommom

Love always,

—LC, 2020

My mother was three years old when she first met Mrs. Kagawa. Twenty years would pass before she met her again. My father was with her then. Mrs. Kagawa played this instrument, the Shamisen, and sang them a song. When she finished, my father asked her, “Mrs. Kagawa…That song you played…what do the words mean?”  She told them:

Time flies like an arrow young people, so be careful what you do with your time.    

Six decades have passed since my mother first met this sage Lady, but her wisdom has remained with my parents and with me. I reflected on her words one fall morning with my mother and father just before returning to medical school after a short break. I was filled with gratitude for the generosity my dad showed in waking to see me off. We hugged goodbye, I remember, and he slowly walked back to his room to rest.

Mrs. Kagawa’s words returned to me a few weeks later as I shared the following dedication during the annual ceremony to honor our anatomical donors at the UVA School of Medicine:

Standing here, together, on this hallowed ground, we honor the good women and men who gave their physical bodies for our education. They gave this gift, their final gift to us and our future patients, people they never met.

In this cynical time in which we live, it is essential to pause, to find silence to reflect on this generosity. If some say true altruism does not exist, we must ask, does their gift not prove that it does?        

The donors we honor taught us anatomy, they remind us of our own vulnerability and mortality, they show us what selflessness is.  

With a flicker we come into this world, for a time we are strong, and then we grow old and we pass just as quickly and mysteriously as our arrival. 

As we reflect on what these great women and men gave during their lives and offered us with their last gift—we must ask, what will we do with our lives, what will we give to society. How will we pay forward what we have been given?  As Mrs. Kagawa told my mother when she was most strong and able,

“Time flies like an arrow young people, so be careful what you do with your time.”

—Thomas Ball, 2013

Thomas Ball is a University of Virginia medical student. This reflection honors his father, who died six months after the morning described, one year ago today.

—LC

I saw the car speed into the yard while perched on top of the ruins. From my vantage point, I could see a cluster of people carrying an elderly woman into the hospital. I was concerned and curious, but given the urgency with which the people were carrying the woman, I decided that I would stay on top of the ruins for awhile until things calmed down.

Hospital, Leogane, Haiti © 2011 Mike Taylor

It was 2011, and I had been sent to post-earthquake Haiti to examine the still-colossal rubble situation. This was my first solo excursion in a developing country, one that was soon to be cut short by an improbable bout of malaria. At this moment, though, I had sought some solitude at the top of the collapsed concrete and steel hospital where I had made my base of operations. As the noonday sun reached its peak, it became much too hot for me to remain on the roof. I decided to try to get back to my little room while causing as little of a disturbance as possible.

What I saw inside was not encouraging. The woman was unconscious and looked to be about 80 years old, if not older. The majority of her family was gathered around her bed, and Dr. Jo was kneeling at the headboard to listen to her chest. My number one concern while in Haiti was to make sure that I did not impede the normal functions of the hospital, so I crept into my room and closed the door. I stayed there nervously for several hours, passing the time by reading Neil Gaiman’s Fragile Things.

Eventually I heard a knock at my door, and to my surprise, it was the doctor himself who had come to visit me.
He asked me, “Did you see this woman?”

“Yes, I did. Is she ok?” I immediately realized what a dumb question that was.

“No…she is not doing well. She has what I think is pneumonia, and we have medicine, but without knowing what is wrong with her, I cannot know what medicine to give her or how much. I may guess, but I need instruments and tools that this hospital does not have yet. This is, as you know, very far from the city.”

“Can you move her to somewhere else where she can get care?”

“No…she is not stable enough to move anymore…I will do what I can, but I am afraid that she will die. I wished to let you know now, so that you too are prepared for what you might see.”

I stayed in my room for the rest of the afternoon, occasionally peeking out to see if anyone had left. In the early evening, after Bernard had brought me another meal that was too large for me to eat, the singing started. I have struggled many times to put anything into writing which could describe what I heard through my closed door, but it always falls short. Suffice to say, it was beautiful. While I couldn’t understand any of the words, I felt like her family was singing her the song of her life in those last minutes as it drew to a close. When the singing finally faded away that night, I looked outside my door to find that the bed was empty.

It has been nearly two years since that afternoon, and I still feel conflicted about committing this story to paper. At the time, I did not quite know what to feel, except for a sensation of guilt in having witnessed something immensely private and profound. That feeling has persisted, but I hope that by finally sharing this story, I can do some small honor to the memory of the woman I never met.

I have to imagine the details of what went on beyond my door, but I believe there was grace and closure in her passing. The world is harsh, certainly harsher in some places than others, and there are many emotions with which one may approach death. I do not believe this woman or her family had fear, or anger, or confusion. In her decades, I cannot doubt that she overcame more adversity than most of us have ever known, but the sadness and pain of those moments were surely accompanied by the joy and love and gratitude of the family she raised around her. Now, as her family sang to her, she accepted her well-deserved rest. I can only hope that when it is my time, whenever that may be, that I can pass on as gracefully as her.

Some Haitians have a way of looking at time that is very different than we do. As I struggle to bring this to a close, I find myself thinking back to my first day in Haiti when everything in that country was new to me. My eyes kept flickering between my watch and the dusty road while I shuffled my feet and waited for a car that was already forty minutes late.

“What time do you think our ride will be here?” I asked my Haitian friend, trying not to sound impatient.

My friend grinned, and told me simply “I do not know, but I will give you your answer as soon as it arrives, and no sooner than that.”

— Mike Taylor, 2013

Mike Taylor is a researcher at Carnegie Mellon University currently pursuing a PhD in Robotics.  He first traveled to Haiti in 2011 to study the energy infrastructure and rubble situation in Leogane after the 2010 earthquake.  Mike documents his work and travels through photographs, such as the image above and this panoramic view of Port-au-Prince.

— LC

Narrative knowledge allows and encourages human connections.
— Julie Connelly, “In the Absence of Narrative,” 2002

I learned a very important lesson one afternoon last summer.  At the time, I was medical director of the local hospice, a part-time position that required visits to patients in their homes. Most of the visits were scheduled, but sometimes situations changed, emergencies happened, and I was needed right away.

That day, the nurse called me at home where I was writing. It was an afternoon that I had looked forward to as a time to get some of my own work completed.  She told me that last week an elderly man was visited at his home by his family—a usual weekly visit. He seemed to be doing well enough, but today their visit was different. He was in distress.  They called for help and all reports suggested that he was dying; the nurse needed me to go see him right away.

I arrived at his home after a 40-minute drive.  In the yard where I parked, I was met by a hospice nurse, the patient’s granddaughter, and his daughter.  We talked outside for a few minutes, where they described their concerns and the changes in his condition that had occurred in the last week, and then we went in the house to see him.

The white frame house was surrounded by an unfenced yard, lilac bushes were in bloom, and a yellow and white cat ran across the back door.  Inside, we entered a porch, then moved into a large dark room where books and magazines were piled high, boxes of collected belongings filled the space, and clothes were neatly folded in an overstuffed chair. In one corner of the room was a double bed where a very frail 94-year-old man was lying on his back, his eyes sunken deep, and his head propped up on several pillows.  He was totally alert and present to all of us entering the room. He looked at me and said, “I know you, yep, you took care of my wife when she was at the nursing home.” I didn’t recognize him at first, but then I began to remember his wife, her illness and death several years before at the nursing home.

As we talked, he told me that he had been nauseated and unable to drink anything for the last five days. He said that his “belly” hurt, and he wanted a shot so it would stop hurting; he also said, “I really want some lemonade. I’m so thirsty.”  When I asked him about his medical history, he said, “I’ve never been sick before. I’ve never been to a doctor, never to the hospital, and I don’t take any medicines.” This was so remarkable for a 94-year-old—no history of being ill at all.  I was amazed.  Happily I said to him, “Wow, you are a lucky man!” I was sitting next to him on his bed.  He stopped and looked straight into my eyes with an incredible intensity. He said, “I’m not lucky, I’m blessed.”

For a while after the nurses got him settled in a clean bed, he sipped cool lemonade, the only remedy he desired for his thirst. Then he rested his head back on the pillow as a smile appeared. He closed his eyes.  Later that night he died.

— Julie Connelly, MD, 2013

Julie Connelly is an internal medicine physician, photographer, and writer who explores the value of narrative for medical professionals through her pictures, essays, and stories. She is the author of an essay entitled “In the Absence of Narrative,” in the collection Stories Matter: The Role of Narrative in Medical Ethics (ed. Rita Charon and Martha Montello), in which she makes the case for creative reflection in improving physician-patient relationships and empathic medical care. Though luck, whether good or bad, may bring physician and patient together, Connelly demonstrates in this and other narratives how the lessons of physician-patient encounters at the end of life may reveal themselves as simple, yet powerful, blessings.

— LC

As a veteran third-year medical student, I have encountered many touching cases in the past year, yet the urgency associated with modern medicine has not allowed me much time for reflection on such instances.  I have been told to avoid getting involved “on an emotional level” because “it might cloud my judgment” or “distract me from caring for others.”  Both are valid arguments, but I encountered a situation this week that jarred the foundation of some of my views of medicine.

I was sent to examine and obtain a history of Mr. J, a 77-year-old man with an inoperable brain mass.  On chart review I saw that he had been diagnosed with CNS B Cell Lymphoma—a particularly nasty malignant tumor—that had spread to his brainstem.  When I went with a younger third-year student to examine the patient, a nurse was in the room tending to him.  He was visibly struggling with secretions leaking from the breathing tube in his neck, and my first, visceral reaction was “is he drowning?”  After a minute or two, the nurse suctioned his tube and left the room.  The patient had calmed down, but I soon recognized the reality of his situation.  He had a nightmarish condition known as “Locked-In Syndrome,” in which one has intact cognition but total paralysis except for extra-ocular movements.  This is one of those conditions you learn about in the first two years of medical school that you never want to see, as the thought of being locked in your own body is a truly frightening one.  We assessed him briefly, and he appeared stable before we left to do a more extensive chart review of his condition.

Reading part of his medical history revealed that he had slowly developed this condition over the past 4-5 years without a diagnosis until a year ago, when he was already severely debilitated.  His current prognosis is exceedingly poor as he is in a “step-down” unit (one stage below an intensive care setting) and has been diagnosed with severe sepsis.  On further reading we discovered that his wife and family had been in contact with their primary care physician to try to transfer him closer to home so that friends and family could say their proper goodbyes. This would require a very rare use of “back transfer” to a smaller hospital essentially for hospice care.  Surprisingly, a local hospital initially agreed to accept the transfer once a bed opened up; however, that afternoon hospital administrators called to inquire about the status of the patient and the acute needs for level of care.  In other words, the palliative care team was asking, “Will we get reimbursed for the care of the patient?”  The answer was, unsurprisingly, likely not.  That essentially put the entire transfer on hold.  I had experienced such inadequacies in the bureaucracy of medicine before, but further reading revealed inadequacies that enraged me even more.

The patient was a Vietnam War veteran in the early 1970s, and his chart clearly stated that he was exposed to the nefarious “Agent Orange” in the field.  Agent Orange was a combination of herbicides and pesticides used to deprive Vietnamese guerillas of cover. The short and long term health effects of Agent Orange are well documented, with severe birth defects and multiple malignant tumors developing in those exposed.  This patient believed his lymphoma might have been caused by exposure to the chemicals many years ago.  According to the chart, when he went to the Department of Veterans Affairs (VA) for a workup, he was turned away briskly without an interview or physical exam. The patient had no choice but to come to the UVa Health System for advanced care since the VA would not hear his concerns. I wondered: is this really how society treats the veterans who fought for our county?

Mr. J’s tale both enrages and saddens me.  I grew up in Virginia Beach, an area with a proud military tradition.  In addition, I have strong personal beliefs regarding the power of patient desires, particularly at the end of life.  While I cannot comment on the truthfulness of what I read in the patient’s chart (I was unable to speak with his wife and family because they were back at home, pleading with the local hospital administrators to allow the transfer), I am struck by the failure of so many to help him.  He is a veteran, and the VA appears not to have done its due diligence in addressing his worsening condition.  While I understand the issue of finances, particularly in this economic climate, I am nonetheless appalled at the actions of the hospital-particularly rejecting his admission after initially allowing it.  This is an individual who is dying, and his family wishes for him to be returned near to home for a proper goodbye.  He should not be forced to spend his final days in a facility where no one (his family, physicians, or UVa staff) wants him to be. That feels fundamentally wrong on almost every level.

I do not know how this situation concluded, but I maintain hope that an arrangement was made for some sort of transfer.  This is the first instance in a very long time that I have had a truly visceral, emotional response.  I am a strong believer in the phrase “you do not need a reason to help people.”  I am comforted, however, by the many people involved (both family and staff) who genuinely care about the patient’s well-being and are working to make his wishes a reality.

— Cliff Cutchins, 2012

Locked In: Part I and Locked In: Part II are reflections by two third-year medical students at the University of Virginia on the case of a Vietnam War veteran with “locked-in syndrome,” whom they met during their rounds. One student expresses his dismay at this gentleman’s condition and treatment as if revealing a page from his diary while the other imagines himself in the mind of the patient releasing words trapped within and transforming them into lines of verse. Both look to creative writing to confront the gravity of the situation in which their medical studies placed them, to vocalize their distress rather than lock it inside as their patient was forced by illness to do.
— LC