A Matter of Life and Death. Sue Armstrong
encephalopathy and Alzheimer’s disease, though both conditions leave holes in the brain.
In London, paediatric pathologist Irene Scheimberg took me round the tangly garden of her terraced house before cooking me a Tunisian dish for lunch and telling me her life story – how she had had to flee from her native Argentina when the military junta started abducting her friends, and how she ended up doing pathology in London. Julia Polak, also from Argentina originally, talked to me in her apartment overlooking the Thames at Chelsea as seagulls screeched outside and the sound of boats chugging past drifted through the open French windows. Dame Julia, one of the longest survivors of a heart-lung transplant, was housebound that day, preparing for her biannual hospital check-up, and she talked of her brush with death and her quest today to ‘build’ new organs for transplantation. In Oxford, paediatric neuropathologist Waney Squier shared her concerns about shaken baby syndrome and described the often theatrical nature of court hearings at which she has to bear expert witness over the death of a baby.
In Cape Town, South Africa, the only deaths that are investigated more or less routinely with autopsies today are those of babies, said Helen Wainwright. Based at the famous Groote Schuur Hospital, Dr Wainwright told me that two of the biggest scourges in the community she serves in the Western Cape are AIDS and alcohol, both linked to poverty and disadvantage. In the apartheid years, workers on the wine estates received part of their wages in alcohol – the so-called ‘tot system’, whose legacy is painfully apparent today.
I began my travels in the USA in Chicago, in a high-rise apartment block on the shores of Lake Michigan where I was to talk to Francisco González-Crussí. This was a man I was particularly keen to meet, having read his delightful essays on the pathologist’s world in preparation for my radio programmes. Sipping the most delicate jasmine tea I have ever tasted – served to us in tiny, steaming cups by Dr González-Crussí’s Chinese–American wife and fellow pathologist, Wei Hsueh – we talked of the often rocky road that led him from a very poor neighbourhood in Mexico City to a pathology professorship at Northwestern University Medical School and head of laboratories at Children’s Memorial Hospital, Chicago.
In Boston I learnt of a lifetime’s preoccupation with the fascinating conundrums of cancer from Christopher Fletcher, in his small office crammed with books and papers. And I met Kumarasen Cooper, a South African of Indian descent who told of the dreadful struggle to train as a doctor back home under the apartheid regime; of his own family’s involvement in political opposition to the Nationalist government; and of his visits to his brother, incarcerated on Robben Island in a cell next to Nelson Mandela. In Washington I met Jeffery Taubenberger, head of a gleaming new high-containment laboratory for investigating lethal germs at the National Institutes of Health, whose personal research obsession has been the virus that caused the deadly Spanish flu pandemic of 1918.
After a few more stops and a lot more talking, I ended my travels in the US with a visit to the Body Farm in Knoxville, Tennessee. I had read about this extraordinary facility, where corpses are left to rot under varying conditions so that scientists can study the processes of decomposition, and could not resist the temptation to meet the man who started it in the 1970s. Bill Bass met me at Knoxville airport and, though I had expected to speak to him at his office or home, I found myself driven straight to the Body Farm for a conducted tour, followed by a visit to the archives where all the bodies finally end up as beautifully cleaned, preserved and catalogued boxes of bones. To my surprise, having been in the presence of death only rarely, I was not in the least disturbed by the experience. In that patch of woodland overlooking the Tennessee River, where the autumn sun shone dappled light on to bodies and bones among the fallen leaves and birds hopped about in the treetops, there was an air of peacefulness, timelessness and, yes, deep respect for the dead – for the people they had been and for the contribution they were making voluntarily to science. Bill Bass, now an old man, was gentle, courteous and great fun to be with as he shared his life story.
These are just a few of the fascinating characters I met. Without exception, my interviewees are people who are passionate about what they do: no one admitted to ever wishing he or she had chosen a different path in life. However, only two of my interviewees had a clear intention to go into pathology before they entered medical school; the great majority had little idea of what a pathologist did and no great pull in that direction until they chanced upon an inspiring teacher, or became transfixed by the world that unfolded under the microscope. Very many described how singularly beautiful that world is, and, by extension, how visual appreciation and visual memory are essential to success as a pathologist.
This is one of several common themes to emerge from the conversations. Another is the intense curiosity felt by my interviewees as they trained to become doctors, to know not only what ails a patient, but how and why – to uncover the mechanisms of disease behind the diagnoses. But the popular image of the pathologist as a somewhat socially dysfunctional loner turns out to be a myth. While some people did say they were happier working behind the scenes than on the front line of clinical care, a surprising number do have direct contact with patients and families.
As in every field of science and medicine, the ethical standards that underpin pathology practice are not cast in iron, but evolve in line with the ceaseless debate in societies about what is right and wrong. Thus many of the things that were acceptable 10, 20, 30 years ago are not acceptable today. As these interviews show, context, too, is important: things that are acceptable in one culture may not be so in another. Mostly, the rules change gradually and piecemeal. But sometimes a dramatic event precipitates a wholesale rethink. The Alder Hey and Bristol controversy, which drew in a wider circle of institutions, was one such event. In the UK it changed the relationship between the people and their health service in a few short months, and may well have pushed the pendulum of reform too far and too fast. A major theme to emerge from the interviews is mighty frustration among pathologists with the tangle of red tape that surrounds pathology practice almost everywhere today, and the threat this represents to existing archives and future collections of samples and specimens of human tissue that are so vital to teaching, research and advances in medicine.
This book is essentially a collection of self-portraits, and though they share some common concerns, the people whose voices you will hear in these pages, and the stories they have chosen to tell about themselves, are all very different. For some, the emphasis is on the eventful journey to where they are now; for others, it is on the disease or research topic that has become the focus of their working lives.
But why, you might wonder, should a book that deals with the ‘science of medicine’ appeal to a general audience? When I was working on the radio programmes, I passed one day, on my way to an interview in Central London, the venue of the Body Worlds exhibition – the controversial show put on by German anatomist Gunther von Hagens, which gave visitors a tour of the human body preserved in lifelike manner by ‘plastination’ and presented in personal and sometimes shocking ways. A handful of angry protesters wielding placards outside had failed to deter attendance, and visitors were queuing round the block. Bodies – how they work and what can go wrong with them – are quite simply fascinating to us all.
Finally, a word about selection and editing. Only about half of the interviews undertaken for this project are featured here, simply because the conversations proved too interesting to curtail, and there was a limit to the length to which this book could run. With the subjects’ collaboration, the interviews here have been significantly cut down, and the text sometimes reordered, to tell a much shorter story than the original, or else to focus on a particular aspect of the whole. But what has eased the painful task of selection somewhat is the fact that the full, rich collection of conversations, each running to its original length, is to be made available in an archive for the Pathological Society. Thus readers who wish to know more about the individuals and their lives, and/or the science with which they have engaged, will be able to access their interviews on the Internet (at www.pathsoc.org) soon after the book is released.
Julia Polak
Director of the Tissue Engineering and Regenerative Medicine Centre, Imperial College London
Julia