ELMI MULLER

This text addresses personal and emotional aspects of my career and life, and is very different to the scientific content, delivery and register of my professional and scientific presentations.

Dedicated to my patients, both past and present

“Eerstens wil ek net dankie sê vir die feit dat ek nou elke oggend avo-toast kan eet […]
Ek weet nie wat om met al my energie te doen nie! As ek nie in die berg hardloop nie, swem ek in die see. En as ek nie in die see swem nie, vererg ek my familie.”

(First, I want to thank you for the fact that I can now eat a slice of avo toast every morning […] I don’t know what to do with all my energy! When I am not running in the mountains, I swim in the sea. And when I am not swimming in the sea, I irritate my family.)

Christmas wishes from Nancia, kidney recipient, December 2022

Musical pointers

This short piano piece is one of the twenty Visions Fugitives composed by twentieth-century Russian composer Sergei Prokofiev. Each one presents as an apparition on a misty day, with no perceptible, comprehensive vision or form. The little pieces have a fugitive and transient tonality: functional harmony of tension and resolution exists, but is often coloured by unexpected dissonance. Every piece suggests a different emotion. Some are sad, others virtuosic. Like most abstract music, it does not mean something as such and has no definite message. Although none of the pieces are particularly jolly, there is, in their tight clarity, also optimism. Perhaps it is the youthful optimism of the composer, who was in his mid-twenties when he composed them. But there isn’t much else to hold onto. No traditional form or harmonic sequence, and if these exist, they exist only as foils for moving away from expectations. Fugitive. Transient. Short. Endings that drift away, without emphatic gestures.

The piece I played at my Inaugural Lecture is the sixteenth from the set and is entitled Dolente, meaning ‘very sorrowful’. It is a polyphonic miniature in three parts, with a scalar, chromatic descent characterising the first and third sections, and a more lyrical middle section with a slurred-note motive. To me, it sounds sorrowful because of that chromatic descent, the dissonance, the contrast with the lyrical section, and the disappearing end on the high E.

In this inaugural lecture I want to present such fugitive reflections on the difficult themes of pain and death, and how these intersect with my career in surgery. I want to move away from the traditional genre of the inaugural lecture because these themes require, I think, an attempt to speak differently, emotionally, about things we know. The responsibility of responding to pain and to death, one might say, also requires an affective reckoning.

I want to reflect on a career that reaches back over thirty years; a career that, in many ways, is intertwined with the child I was, and the student into whom the child grew. Who and what I became as a medical professional has been knotted together with the child and the student in ways I have not always realised or acknowledged. Our careers start very early and play out in our games and dreams, in who we are as children and students, and in the lives we lead, which are ostensibly supported by these careers, and also contribute to shaping them. If every career is unique, it is because every person is unique. But this uniqueness is hardly the result of an individual’s singular characteristics alone. It is also the result of the people whose lives we touch, and those by whose lives we are touched during the course of a life and a career.

My inaugural lecture is deeply personal and emotional. It is my privilege to share it with you.

The career choice

My career resulted from a way of thinking I adopted before I could think for myself. It was a way of thinking that entertained the idea that only certain careers provided enough security to live a comfortable life, and that careers were arranged in a tiered system that correlated with intellectual achievements, measured by marks. We were four children, raised on more or less one salary. My mother was a music teacher who taught from home, but this never generated a substantial or dependable income. My father worked, for the greater part of my childhood, in various human resources management positions. He was determined that I should have a professional vocation. I was allowed to choose a future career, as long as this choice honoured his idea of what a professional vocation was. In Grade 11, I started watching various medical programmes on television, and at some point during that year, I wrote aptitude tests. Afterwards, I was told that there was only one possible career for me: I had to become a medical doctor.

My mother was concerned, I think, about the idea that I was to work in a profession where I would be confronted with on a daily basis with pain. But I was pleased. I was intellectually affirmed. When I made my career choice, I had never spent a day working in a hospital. I had never job-shadowed anyone. I decided on my future career in an abstract, intellectual way that made perfect sense to the child I was then. I thought of myself as clever, strong and successful. I also thought I was a ‘people’s person’, even though I was not particularly sociable and was somewhat naive. My becoming a doctor had little to do with understanding anything about what the profession entailed.

My first year of studying medicine was an unhappy one. All my subjects were about memorising facts – something I hated. I couldn’t immerse myself for hours in algebra or geometry problems, which I loved doing. I remember looking at my grandmother’s veins and thinking: Do I really have the courage to stick a needle into her arm? I thought of giving up, and yet I did not. In my second year, we started dissecting. I remember the smell of the dissection hall, and I remember the fat of the cadaver we worked on. Everything was difficult, and there was little excitement. I had been a church organist since my early high-school years and continued to play in church as a student.

When I played at funerals, I often cried. I felt it was sad to celebrate death with beautiful music.

In my sixth year of study, I was doing well academically. My final internal medicine practical examination consisted of two patient case studies. The first one was a 24-year-old diabetic with all the complications of diabetes. I remember how I presented him – microvascular disease, macrovascular disease, and autonomic neuropathy. I dilated the pupil of his left eye with a Tropicamide drop to be able to see his retina more clearly. I forgot to tell him that he should inform the next student about this; perhaps those who came after me thought there was something wrong with his eye. I presented him to my professors in Afrikaans while he listened to me. He, too, was Afrikaans. I openly discussed his bleak prognosis in front of him while he listened.

One day, sometime later, I thought of this patient again when I accidentally used pupil dilating eye drops to soothe an irritation in my own eyes. For the rest of the day, I couldn’t read or see anything up close. I had never thought that one should warn patients when you dilate their eyes.

In a long academic training, examinations become rituals of progress. My Fellowship of the College of Surgeons examinations in 2004 were a highlight. We drank champagne in the study. My youngest son, Johan, was a few weeks old. He had made his arrival in the month between the written paper and the oral examinations, somewhat unexpectedly. I was happy. Everyone was happy. I was about to start the easier part of my career. The examinations were over.

Physical pain

I could start at the beginning. But I don’t want to do that. The story, as I feel it, is not one that runs in a linear way. When I think about my career, I don’t think it of it as a story. It is stories. Fugitive visions, like Prokofiev’s piano pieces. Ideas that sound in short, poetic fragments. Flashes of memories that have remained, in many cases, unspoken yet vivid. Dark descents, lyrical moments, ambiguous meanings. Many of my fugitive visions are about pain.

I have many years’ experience of operating on donors who donate kidneys to their next of kin. Every time I perform an operation, I do it in exactly the same way: the same incision, the same order of procedure, the same pattern, the same dissection. And yet, surprisingly, there is a broad spectrum of difference in how people respond post-operatively. Some complain of severe pain; others claim that they feel no pain. Some people present with nausea, while others enjoy their hospital food with unlikely appreciation the very same evening of their surgery. Some of my patients return to work two weeks after their operation and adopt their normal sleeping and exercise routines without too much disruption. Others experience more difficulty.

This difference in the experience of physical pain and levels of resilience has something to do with patients’ general level of fitness, but also with what happens in the brain, with their earlier experiences and expectations, and with the attitude and personality of the individual. In other words, not the brain as such, but the mind. I suspect that it also reflects, in some cases, the relationship with the recipient of the kidney, and the desperate eagerness for restored health projected from the donor onto the recipient – in other words, that the giving of the organ is not enough, but that it is accompanied by a will to make the recipient feel better. It is also possible that some donors compare their own pain and discomfort to, and measure it by, the pain and discomfort of the recipient. Many recipients experience their operative pain in the context of extended periods of suffering, depression or anxiety. Some donors view a day of post-operative pain as insignificant in comparison, thinking themselves fortunate and privileged to be able to donate a kidney.

But the converse is also true. I have had cases where donors questioned why recipients looked so markedly improved after a transplant, while they feel decidedly, and understandably, worse than before the operation. Through many years of practice, I have concluded that this experience of pain has something to do with what I call a baseline of health and wellbeing. If one has an excellent baseline (which many donors do) and you undergo a major operation, day 1 post-op is experienced as far below the baseline of how one is used to feeling. Therefore, one feels justifiably worse off than before the operation. For recipients with a very low baseline of health and wellbeing – those who had been used to chronic kidney failure and pain and discomfort – day 1 after receiving a new kidney represents a marked improvement on the normal baseline, and feelings of positive energy are often the result.

In other words, the experience of pain – something we tend to view as real, or at least as real as the body is real in the world – refutes the Cartesian split between mind and body. The mind changes how the body experiences pain, and I have always had a special fondness for the minds of those donors who experience less pain in the context of the recipient’s long-term suffering.

Emotional pain

While physical pain is sometimes thought of as an objective experience, nobody makes that assumption about emotional pain. Emotional pain is often experienced just as deeply by those close to the individual affected by the physical pain. Despite many years of encountering this kind of pain in clinical situations, I have not grown used to it. Nothing can really prepare one as a clinician for the emotional pain of patients, for the fact that you cannot control or eradicate it, or for your own emotional response to the personal tragedies of those in your care.

Faced with emotional pain, I think we remain stuck in naivety; always encountering it anew, always surprised that we can endure more, and persevere, in spite of what we think we know about such pain. There is an infinite variation of emotional pain.

As a clinician, one encounters it not as the pain of another body, of ‘the other’, but as the shared pain of being human, pointing back to the pain of the self. I have never experienced severe physical pain, but I am all too familiar with the tears of witnessing sadness or grief.

Describing my own encounters with emotional pain and the career that is surgery would have to start, I think, with the sacrifices that begin in childhood and adolescence, when one works towards degree admission. Admittedly, this kind of sacrifice is hardly unique to a career in surgery, but today, that conscientiousness and early focus entrained away from pleasure and gratification registers as a loss with me. Then, inevitably, there are the personal expectations that one has for oneself as a child and a young adult, and the gradual realisation of how these expectations need to be adapted, curtailed and toned down in the face of the thing called ‘the job’ and, later, ‘the career’.

I have always felt, and said to young surgeons in motivational talks and to women who wish to enter the career, that the key to success in a surgical career is compartmentalisation; keeping the work confined to the operating theatre, the ward, the hospital, and not letting it spill over into one’s personal life and the domestic sphere. How successful I have been in this is a question my family has to answer, but what I did not reckon with adequately, I think, was how not to let the demands of a career in surgery invade those parts of me that I also cherished and that had nothing to do with my career: my love for drawing and for performing music, and the delight I take in numbers. These loves live as phantom pains in my awareness of myself.

Compartmentalisation of the world as a place of dwelling is one thing; compartmentalisation of the self and her longings is another altogether.

As my career became established, I realised that the life of the kind of surgeon I am is a life attached to a phone or, in the years before mobile phones, the pager. It is a life that is always on call – week in, week out – with a phone on the bedside table, a phone as a companion during dinner, over weekends, during evenings out with friends, at kids’ birthday parties. From very early on, patients, transplant coordinators, anaesthetists, nephrologists, pathologists and fellow surgeons had my phone number on speed dial. I grew accustomed to living a life that could be punctuated at any time by a call from any of these people, often depending on me, creating a sense of a life not only lived in service of others, but one determined by the needs of others. The emotional toll of this stems from the very fact that these needs are not, primarily, emotional. The needs that present themselves to me as a surgeon are the needs of critically ill people, people who are dying and who approach me saying: “Doctor, we know we are in good hands.” “Doctor, we know you are the best.” “Doctor, we know you will make the best decision on our behalf.”

Encounters

If the phone as conduit is a symbol of my entanglement with the critical needs of others, the entanglements themselves are not contained to speech acts. When I was 24 years old, a year younger than my eldest son is today, I had to counsel a patient for the first time as he was dying. I was working in the Darlington Memorial Hospital in the northeast of England, and my patient was dying of cardiac failure. Every morning, my registrar and consultant saw the patient with me, the house officer. And every morning, they left the room and agreed: His prognosis is poor. The morning of what proved to be his last day, the consultant walked out of the room and announced: “I think he is dying.” That was all he said. I returned to the patient after the ward round and spoke to him in my then still very basic and limited English. I explained to him that he was dying, and he started crying. He asked me if I could phone his children. Both of us were crying now. I was crying because I couldn’t believe what was happening to me. I had become used, during my house officer year, to seeing patients with blue veins and bruised arms, attaching drips and administering diuretics, and then, as part of my work, a few days later, filling in mortuary forms when they had died.

It is difficult for me to speak about this. For how does one speak about your own emotions about people who die when you are expected to be strong enough to see them die and look after them? Today still, I struggle to think this through. How lives come to an end; how patients stop responding to treatment; how to respect the pain of the self when confronted with this inevitable end or crossing of ‘the other’, when the pain of taking leave and of loss and grief overwhelms those involved, and one hears: “Doctor, we know we are in good hands.” “Doctor, we know you are the best.”

I have a pair of light-pink socks that I wear underneath my winter boots. These are long socks, and the toes have small blood stains. These are the socks that I wore the day Mr Peters died on the operating table. I did his cava anastomosis, and the liver did not perfuse well. There were no options. The cava could not be redone. It was the winter of 2020. I remember this because I kept the socks on underneath my operating shoes while I operated. In the car on my way home, I felt incredibly alone. There was nothing about this that I could share at home. Cava anastomosis is not something many people understand. I still wear the socks.

For many years, I worked and trained with Professor Del Kahn, my predecessor as the head of the Transplant Unit at Groote Schuur Hospital. One day early on in my career, after an unsuccessful transplant, I was particularly emotionally affected. Prof Kahn spoke with me and said that it was inevitable for surgeons to take complications personally, as a reflection of their own abilities and competence. I realised, not without a dreadful sense of inexorability, that every bad outcome, every complication and every death would henceforth also, inevitably, be a personal failure. Sometimes I was aware that, as I spoke with patients or families about complications, I was crying not because I was sad for them, but because I had failed and was distraught at my own limitations.

This crying with others while crying for oneself, this crucible of emotional distress in which a clinician cannot but admit defeat of any attempt to keep things in their place, to compartmentalise, was not something I was prepared for when I became a surgeon.

A new scene: The Churchill Hospital in Oxford, England.

Enter: A female medical doctor aged 34. She is being admitted for chemotherapy.
She tells me: “I cannot believe I am 34 and have advanced cancer.”
She asks me: “Do you know my children are 8 and 6 years old?”

I say nothing. I am expecting my first child and am only doing a weekend locum for extra money. The coming weekend is my sister-in-law’s wedding, and my husband will be travelling to South Africa on his own because I am too far pregnant. Suddenly, I am scared that my child will not be normal. I am fearful of having a child. I don’t feel ready. She says to me: “Remember, if you get cancer, choose the right oncologist.”

My first-born. What perhaps changed me most radically as a doctor was my eldest son’s diagnosis with type 1 diabetes in 2007, when he was nine. I have never been able to speak with patients in the same way ever since. There is nothing more to say about this, except that the sharing of emotional pain is not one-directional. When Tagmeeda Adams’ kidney didn’t work, I contacted her parents. I spoke about my pain; about how difficult it is to have a child with chronic disease. I told them how I would do anything to take away my son’s diabetes. Then I spoke about the kidney that Tagmeeda’s mother had donated to her, and their expectations that the new kidney would take away their child’s suffering. I said that I, too, would do anything to make my own child better. I spoke about my child and my suffering, and they cried.

There was Rudy. I remember him well. His eight-year-old son needed a kidney. His wife was not a suitable donor, and Rudy was overweight. He had to work hard to lose more than twenty kilograms. He wasn’t much older than me. The day I saw him for the first time, he wore a T-shirt of his favourite heavy-metal group, full of zombies and skulls. Rudy was angry. Angry with the world, including his wife who could not donate a kidney, and his son who needed a kidney and had countless medical problems. Angry because his life seemed to be ebbing away with all these worries and responsibilities. But he always laughed and made jokes. We laughed together. We devised a weight loss programme for all the staff in ward E12, with Rudy’s vitamin cocktails. I diluted his vitamins with Oros orange squash. And we laughed. Perhaps Rudy heard, in the shared laughter, the shared pain.

But much of the training I underwent and the experiences I had as a trainee surgeon conditioned me to deny such common humanity and obsessively sever the bonds that would allow for the recognition of shared emotional pain.

My earliest memory of clinical work is as a student in obstetrics. The obstetrics ward in Kalafong Hospital in Pretoria was brutal. Women bled and tore, and we had to cut episiotomies without local anaesthetic. The consultants told us not to worry, the women don’t feel the pain of the cut when they are experiencing such excruciating pain already. We had to wait until the baby’s head was pushing against the skin, and then cut, quickly. The most difficult thing was to suture the episiotomy afterwards. Between the blood and pain and the feet in lithotomy, I was never sure whether I was bringing together the right layers. It was bloody and messy. Afterwards, there was a clinic where consultants and registrars had follow-up consultations with the women who had had episiotomies. I never knew whether I had closed mine correctly, and I couldn’t bear to know.

When I was twenty, I worked in the emergency unit of the then HF Verwoerd Hospital, today’s Steve Biko Academic Hospital. I was working in the orthopaedics rotation and had to admit patients with fractures. A twenty-one-year-old male was brought in. He had been in a serious motorcycle accident. His femur and tibia were broken, and we were preparing him for theatre. He was in excruciating pain. My registrar was in theatre, and I was a student, which meant that I couldn’t prescribe morphine. I remember the wailing and the cries for help. In 2014, upon turning sixteen, my very insistent eldest son – now also wearing T-shirts of heavy-metal bands, full of zombies and skulls – presented with a desire to own a red, second-hand, two-stroke Cagiva motorcycle. He was not to be dissuaded. The look of indescribable joy when he mounted what a friend of mine called his “new, red Italian crotch rocket” was a precious moment for us all.

And yet I couldn’t sleep. I heard the crying and the wailing. I don’t know what happened to that young man I saw thirty years ago in the emergency unit.

When I was thirty, I was specialising in general surgery at Groote Schuur Hospital. One evening, I was working in the trauma unit. A police officer walked in on a consultation with a patient who had a gunshot wound to his leg. Pointing to the patient, the police officer said: “That man broke into a house, and tests will be required because the incident was accompanied by an alleged rape.” I could easily not have administered morphine to the patient. It was the first time I was confronted with such a dilemma. Nobody would have noticed. I realised with a shock how much power I had. I never again wanted to know the back story of those I was treating.

Not all fragmentation, then, is poetic. In the fragmenting of the self, and of the relationship of the self with the other to survive emotionally, there is also an alienation, a becoming less-than.

One of the bravest things I did in my career as a surgeon was to perform the first HIV-positive-to-positive kidney transplant in the world. That procedure not only temporarily put my career at risk, but also launched an academic career that produced research with a real-life impact for HIV-positive patients with kidney failure. From that first transplant, and the ones that followed, important virological, immunological and clinical questions arose. I travelled the world addressing these questions and sharing the results of my growing clinical trial with these patients. The culmination of this work was the A1-rating awarded to me by the National Research Foundation (NRF) in 2021 as a leading scientist in my field internationally.

This was an unusual achievement for a surgeon, whose clinical work is often viewed as a mechanical and functional skill, quite separate from scientific research. I, too, had become used to seeing it like this, separating what I did in theatre from my academic career, downplaying the hands that cut and held and sutured. But what led to my breakthrough work would not have happened without my hands. Of the many highly experienced people who had reviewed my NRF application prior to its submission, the only person who insisted on the importance of the whole, and suggested how that whole could be articulated as academic work that had evolved from a hand holding a scalpel, was my husband, who is a music scholar. He understood that, as a surgeon, I was a performer of sorts. From years of working with artists based in practice, he was able to help me frame my work and research also as a performance-based scholarship, where what the hands ‘knew’ was real knowledge, and not only the prerequisite for real knowledge.

Over many years, I had been conditioned to think of my hands, their dexterity, the paths they took, their clever and refined virtuosity, as the mechanical part of my work, compartmentalised in the efficiency and resultant satisfaction of doing something I was very good at. But once I accepted that what the hands knew connected in definitive ways to who I was as a scholar and human being, the sum became more than the parts in thinking about myself as a researcher.

Can one know this, make this connection, and still make an incision on a living person? I don’t know. The hands remain the hands of the performer, and the theatre remains a performance space outside the world of the scholar who writes, and the world of the mother who caresses and holds. The scalpel is best guided by neither theory nor passion. It follows the choreography of the performance, where what is right is so by virtue of what the hands know; patterned skill, intuition, and the aesthetic of craft. Hence, when complications arise, as Del Kahn told me so many years ago, the failure is personal in a perplexing and complex way. It is also the ego failure of the performer. Perhaps, then, the emotional distress that results from the splitting of the self is inevitable.

I come to the end of these fugitive reflections, with two more stories that seem to say different things, but I am unsure how or why.

The idea for the HIV transplants was sparked by the social worker who used to assess patients for transplants in my unit. Lunghi Hlakudi would attend the dialysis unit’s assessment meeting every week and remark on how many HIV-positive patients were being denied access to dialysis because of their HIV status. He asked me: “Elmi, can’t we do something?” The nephrologists’ answer was an emphatic and unanimous no, making the case that scarce dialysis slots had to be awarded to those with the best chance of benefiting from them. But Lunghi saw the HIV-positive patients as people, not as people with HIV. The first time I personally spoke with one of these patients turned out to be a watershed moment.

The woman was the same age as me, and she had a child of the same age as my eldest son. Her nine-year-old son was to be orphaned if she had to pass away because of kidney failure, as she inevitably would have, in no more than two months.

The pain of death and the pain of knowing that one is dying are obviously two different things. To know that one is going to die in the near future changes one’s relationship with the future from an open-ended to a determinate one. It changes all actions into the actions of farewell. How many times can one say goodbye? When my father was dying, I was experienced at helping people say goodbye. Over a period of three months, I knew that every time I saw him could be the last. But I was used to a different kind of conversation about death and dying. It was a conversation that responded to the words: “Doctor, we know we are in good hands.”

Those words didn’t apply. The dying man was not a patient, but my father, and I was not his doctor, but his daughter. All I could do was hope for an ending that drifted away, without emphatic gestures. Faced with death, I think we always remain stuck in a naivety, always encountering it anew, always surprised at its pain and finality while life in all its abundance continues.