“Fugitive” Reflections on Pain, Death, and Surgery

“Fugitive” Reflections on Pain, Death, and Surgery

By Elsabé Brits

“When I think about my career, I don’t think 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.”

These are the words of Prof. Elmi Muller, a transplant surgeon and the dean of the Faculty of Medicine and HealthSciences at Stellenbosch University (SU), during her recent professorial inaugural lecture.

Muller’s lecture was not an academic one. She spoke from her heart. She talked about the pain and fears we, as patients, are often confronted with. Often, we think: What are the issues doctors contemplate or feel? What do they experience in their world?  She spoke about all of this.

“While physical pain is sometimes thought of as an objective experience, nobody makes that assumption about emotional pain. Emotional pain is often experienced as deeply by the individual affected by the pain than by those close to that individual.

“Despite many years of encountering this kind of pain in clinical situations, I have not grown used to it. Nothing can prepare one as a clinician for the emotional pain of patients, for the fact that you cannot control or eradicate it, or for your 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.”

“How does one speak about your 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 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 cried, not because I was sad for them, but because I had failed and was distraught at my limitations.”

It was Muller who transplanted the first kidney of an HIV-positive donor into another HIV-positive recipient.  Most people with HIV and end-stage renal failure were not previously considered for public-sector dialysis.

It wasn’t easy. After performing the fourth transplant in 2008 at Groote Schuur Hospital, she faced opposition. She was instructed to stop the procedure and received a disciplinary warning. It was an uphill battle to proceed eventually.

The idea for HIV transplants was sparked by the social worker who used to assess patients for transplants in her unit. Lunghi Hlakudi would attend the dialysis unit’s assessment meeting every weekend and remark on how many HIV-positive patients were denied dialysis access because of their HIV status. He asked her: “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. But Lunghi saw the HIV-positive patients as people, not as people with HIV.

During her lecture, she said: “The first time I spoke with one of these patients turned out to be a watershed moment. The woman was the same age as me and had a child 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.

“She was worried about what would happen to her child if she was no longer there to care for him. I thought about my son and how I worried about surviving him. Months after her transplant, she fully recovered and brought her son to the hospital. He wanted to take a selfie with me. It is something that I will cherish forever.”

The article does not reflect the views of HASA.

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