David Biro is an Associate Professor of Dermatology at SUNY Downstate Medical Centre in New York. He teaches in the medical humanities division, directing a course on medicine and literature. Dr Biro’s first book, One Hundred Days: My Unexpected Journey from Doctor to Patient, chronicles his experiences undergoing a bone marrow transplant.
Your first book, Darkness Visible by William Styron, explores the pain of suicidal depression.
In thinking about what five books on pain to select, I wanted to choose works that illuminated not so much the biology of pain but what it’s like to experience and live it. So I thought the best way to start would be a personal narrative. I think Styron’s memoir is the perfect one because he’s a gifted writer who has made a career of trying to express difficult-to-express feelings. His book offers a visceral sense of what it’s like to be in excruciating pain for those who have never experienced that. It also explores the continuity between psychological and physical pain. I believe there is a far bigger overlap here than most people, especially in the medical community, recognise.
There are two other critical insights in Styron’s memoir. One is that when pain is at its most intense, it really is indescribable. Styron does his best to capture those moments and for a while is very descriptive. But when the full force of pain hits, everything suddenly becomes a blur. He becomes, he writes, wall-eyed, which is a brilliant expression of how he felt.
He was suffering from the same acute depression as other writers like Virginia Woolf and Primo Levi?
Yes, and again here are these professional wordsmiths who are left speechless in the face of pain. The other thing I really like about the book is the way Styron describes the isolating effects of pain, especially when it goes on for long stretches. Pain cuts you off from the world. Styron rightly talks of the ferocious inwardness of pain and the aching solitude of pain. These feelings occur in all types of chronic pain, whether psychological or physical. Pain produces a sense of loneliness which, in turn, exacerbates the pain. It becomes a vicious cycle leading to more and more pain.
Let’s move on to your next book, The Body in Pain by Elaine Scarry, which discusses people in pain and people who cause pain.
This book left a profound mark on me and actually inspired me to write about pain myself. I love its thoughtfulness and poetic style, its interdisciplinary nature and the fact that a scholar of literature has so much to say about the world outside the academy.
Scarry starts out with two main premises. Number one, that pain is not merely indescribable but that it actively destroys language, reducing the sufferer to a state before language, to primal screams. The second premise is that pain radically separates the sufferer from the observer of pain. For the sufferer, pain is the prototype of certainty – there’s no way to doubt that you have pain. But it is the exact opposite for those who observe a person in pain. How can we be really sure another person is in pain? Scarry then goes on to explore the far-reaching consequences of these two observations, in medicine, in torture, and in war.
So there is this idea that the people who are torturing have a licence to do it because they can easily choose not to see their victim’s pain?
Yes, and also because the victim is often voiceless. In torture and in war, there is an enormous toll of pain which goes unnoticed or misrepresented and which can then be used to substantiate the power of the torturer or the regime or the warring state. It’s probably not difficult to imagine how these two problems of pain – its inexpressibility and unverifiability – can also have a negative impact in the field of medicine.
You have written about this as well. Why do you think it is so important to be able to describe your pain as precisely as possible?
If patients can’t communicate their pain well and physicians harbour doubts just like other observers, then there’s a good chance medicine won’t always be so effective at alleviating pain. And unfortunately this is indeed the case – the under-treatment of pain is well-documented in medical literature, and a large part of this has to do with failures in communication.
On the other hand, if patients can provide good descriptions of their pain, and if doctors can help them do so and are willing to listen, those descriptions can be as useful in pinpointing the source of pain as an abnormality seen on a CAT scan or X-ray.
How would you encourage people to articulate their pain as successfully as possible?
Well this is the flipside of Scarry’s book. While she talks a lot about the world-destroying aspects of pain, she also talks about the world-building capacity which we might summon in response to pain. That capacity depends upon the imagination and metaphor.
Because pain is so blurry – perceptually and conceptually – there’s nothing to point to or grab on to. So the only way to go is to fill the blur with objects that we can see and describe. We are forced to speak of pain in terms of other, more visible objects, ie we are forced to speak metaphorically. The most common metaphor of pain is the weapon. We say, for example, that pain is shooting or stabbing or crushing.
When you think about it, these words are all being used metaphorically – since most of the time we haven’t been shot or stabbed or crushed but are just imagining that something like this must be happening. So one way of talking about pain is to talk about guns, knives, and hammers, or the damage those weapons can inflict on the human body. There are also other ways to represent pain metaphorically which I discuss in my book. The bottom line is that we have to be exceptionally imaginative when it comes to pain or else it will remain incommunicable and invisible, not only for the sufferer but also for friends and doctors trying to help.
Your next book is actually from the Bible – The Book of Job.
What Job says so eloquently is that you can’t have pain without asking why, why is this happening to me. That is the question that Job keeps asking himself when he is afflicted with one horrible disease after another.
The urge to find a meaning for pain is surely biological. We are hardwired to determine what is causing our pain so that we could avoid such things in the future. The only problem, however, is that we don’t always have the answer to why. Not just in Job’s time, but also in the 21st century. And, in the absence of knowledge, we tend to invent reasons and meanings. In Greco-Roman times the answer to why was that I must have offended the gods in some way.
That still carries on in some cultures.
Yes, only the answers to why vary. In Job’s day the reason of pain was usually moral – what have I done wrong, asks Job, to deserve this? The word pain is actually derived from the Latin word poena which means penalty or punishment. Even though he can’t find a reason, poor Job can’t stop searching for one.
And this actually brings us to the downside of the imagination and metaphor when it comes to pain, which also happens to be the subject of Susan Sontag’s book, Illness as Metaphor. On the one hand, metaphors are so critical because they are the only way to conceptualise and communicate the experience. But, on the other hand, because of the urgent demand to determine the why of pain, there is a tendency to keep on inventing and imagining reasons, to never be completely satisfied. So at first we might start talking about knives and stabbing but then we might start asking who is wielding the knife and after that, why is that person or God wielding the knife. A line of questioning that becomes absurd.
And the energy would be better spent in trying to cure or manage the pain.
Yes, but just as long as we realise that we can’t do without the metaphor either.
Deborah Padfield’s Perceptions in Pain is a very interesting project where she has taken a series of photos to try and convey the pain she and others feel.
Deborah is a remarkable person and so is her book. She is an artist as well as a patient who attends a pain clinic in London. One day she came up with this brilliant idea. If patients like her were having trouble speaking about pain, maybe they could show their pain instead. Maybe what was needed was a visual language of pain. So she decided to work with other patients, taking and manipulating photographic images that would show how they felt inside.
Now remember, this was a chronic pain facility, full of patients who had been suffering for years without relief and who were extremely frustrated. Many felt that that their doctors and families didn’t believe how much pain they were in and eventually they too began to doubt. So Padfield comes along and says, since our words are not convincing enough, let’s try to make pictures.
What kind of images did they come up with?
All sorts of images. Many use the weapon metaphor – images of knives piercing skin for example. But there are also other kinds of images. Some depict the loneliness of pain. Others are examples of what I call anatomic metaphors because they depict what is happening inside the body that is causing pain. But regardless of what type, Padfield’s images are so arresting that they really achieve something not possible with words alone.
What effect did this have on the patients?
An enormous effect. It gave them something concrete to grab on to when they thought about their pain instead of the blurriness that they saw before. Even more importantly, when they shared the pictures with their doctors, the patients felt that finally the doctors understood what they had been experiencing. Even if this didn’t lead to a radical change in treatment, it made patients feel that the doctors were listening, that they now could see and therefore believe their pain, and that they were more invested in helping to alleviate it.
So a positive outcome!
Extremely so. We know from placebo studies how important belief and expectation is when it comes to pain. So any way to enhance these feelings is important. That’s why I think this book is so valuable. Because of the challenges of pain, we have to keep thinking of novel ways to deal with it more effectively.
Your last book is The Challenge of Pain by Ronald Melzack and Patrick Wall.
No two people have thought more about pain than Ronald Melzack and Patrick Wall. First of all as scientists who revolutionised the field in the 60s when they came out with the Gate Control Theory. The theory rejected the notion of pain as a one-way signal starting with some kind of damage in the body that leads directly to the brain. Instead, there are various points along the way where the signal can be modified. This helps to explain why, for example, certain states of mind might make pain less or more intense.
But Melzack and Wall also looked beyond the science of pain. They studied its psychology, cultural determinants, and language. One thing that bothered them was that in medicine, pain was spoken about only in terms of its intensity – it’s a two out of ten or a ten out of ten. But what about the differences in quality of pain?
So they went and asked patients in the clinic and hospital and compiled lists of words which they classified into groups and subgroups. This later became the McGill pain questionnaire which helps patients qualify the type of pain they have in addition to quantifying it. Is it more throbbing or constant? Hot or cold? Sharp or dull?
The greatest part of their efforts was finding out that certain descriptions correlated well with certain diagnoses. So not only did the questionnaire facilitate the communication of pain, it also led to better management of patients.