patients and doctors

I have been doing a lot of reading and writing of late. It feels like a total luxury to be spending my days with books and words and I am enjoying it immensely. As well as writing a good chunk of my own book, I have enjoyed reading a lot of other people’s work. I’ve been reading books about stroke, books about the brain and the mind, books about neuroscience and neurosurgery, books about illness and the experience of inhabiting an unwell or differently abled body. Some of these books I’d read before but felt it was important to return to during the research process for my own. And I’ve been reflecting a lot on the perspectives from which these books are written, the positions from which that their authors write, the particular take they have on health, recovery, and wellness. Following my stroke, many people told me to read Oliver Sacks, which I duly went away and did. I know that Sacks is much beloved as a sort of avuncular figure in the field of popular science, and that many of you find his writing humane and amusing and insightful. Perhaps I too might once have felt that way, but from the perspective of a person who has experienced brain injury he really is “the doctor who mistook his patients for a literary career” in the memorable words of one reviewer. He may be a fantastically able writer with an undeniable facility of communicating the way that brain deficits might hold a key to the mysterious operations of our grey matter to a general audience, but his early work is so deeply exploitative of his patients, their complex conditions, their lives and their experiences, that I find myself unable to reconcile myself to anything of potential worth in his output. In the months after my stroke, I wept with horror at the Frankenstenian narrative of Awakenings. If you find this book (or the subsequent saccharine film) either moving or humane, I suspect you’ve not reflected on the deeply dubious ethics of each of Sayers’/Sacks’ decisions, or really imagined what it would have meant to be one of his jolly lab rats.

The problem with Sacks’ writing is its exploitative objectification of his patients, the particular ways he chooses to use their stories to tell his. The medical practitioner is always in a position of power, possessing knowledge that patients invariably lack. That power and knowledge is precisely what enables practitioners to make specialised decisions about treatment, but it also allows them to place patients in one box or another. And at their worst, such boxes have moral judgments attached to them: judgments about patients characters or lives, their identities or motivations. I personally find it quite surprising that this kind of morally judgemental writing might command popular appeal, but from the evidence of Allan Ropper’s bestselling Reaching Down the Rabbit Hole: Extraordinary Journeys into the Human Brain (2014) this appears to be the case.

One appalling chapter in this book is entitled: “What Seems to be the Problem: A Politically Incorrect Guide to Malingering, Shamming and Hysteria.” Anyone who has not spent time on a neurology ward may well be surprised and shocked by the basic information this essay contains: that women patients (for they are mostly women) frequently present to neurologists with severely disabling symptoms for which no objective physiological basis can be found. These disorders are variously labelled dissociative, somatoform, factitious, functional – or hysterical. They are the cause of seizures, pain and permanent disability. Over a third of patients in neurology wards are thought to be suffering from such disorders, and their effects are frequently life-changing. I have a personal interest in such matters not just because I know what being on a neurology ward is like, but because I was (incorrectly) diagnosed with conversion disorder by an eminent neurologist before the reality of my stroke was discovered by a student and an MRI scanner. I had a “real” brain injury which caused my hemiplegia, but the disabilities caused by dissociative or somatoform disorders are “real” too. Only tiny numbers of patients who are diagnosed with these disorders could ever be said to be “conscious” fakers or malingerers and though the root of such issues is assumed to be psychological, the symptoms and problems they cause are undeniably physiological. But Ropper is clearly tired of the particular physiological reality of these patients as well as of what he refers to as the “American . . . touchy feely” approach toward them. How he wishes he could tell them (in what he refers to as the “Irish” manner) that they are “wasting my fecking time.” And though Ropper self-consciously acknowledges that there is something “politically incorrect” in his categorisation of such patients as “hysterical time wasters,” he is much less up-front about the implicit judgments he makes about his patients’ characters, background, and appearances. For example, there is something deeply creepy in his assessment of a nineteen-year old suffering from pseudo-seizures (which he categorises as a hysterical response to the actions of her overly controlling family) as a “lovely young woman” in a tremulous body.

I suffered a “real” brain injury, but if my disabilities were (as was initially assumed) the result of a psychological rather than physiological infarction to my brain would my distress and suffering have been any less real? The attitudes of some of the nursing staff on the neurology ward changed dramatically toward me when it was discovered that I was suffering from stroke rather than conversion. Their treatment of me, in Ropper’s terms, as a “hysterical time waster” made the worst day of my life just that little bit more horrific. Ropper is jocular, witty, readable, in much the same manner as Oliver Sacks but his writing also betrays a disturbing level of judgmental intolerance which Sacks never displays (despite his tendency to objectification Sacks is also far more self-interrogatory).

Happily, the objectifying approach of both of these men to their patients is not the only position from which a neurologist might write. Suzanne O’ Sullivan’s It’s All in your Head: Stories from the Frontline of Psychosomatic Illness (2015) offers a deeply revealing exploration of functional and dissociative disorders. Her book carefully traces the change in her own patient approach over the course of her career, from a naive student who assumes those suffering are “fakers” who have to be “found out” to a mature professional who treats each case with compassion and understanding. She reveals how her own assumptions drive diagnostic errors (a patient whose behaviour she finds irritating and initially diagnoses with conversion actually turns out to have a brain tumor), and unpacks how judgmental approaches to the functional symptoms with which patients present might impede rather than enable their recovery. The key concern of any patient diagnosed with a dissociative disorder is that they are not being taken seriously, that those entrusted with their care are making assumptions about the “made up” nature of their symptoms. While Ropper’s intolerant approach to this issue widens the gulf of distrust between doctor and patient, O’Sullivan attempts to bridge that gap with basic understanding. Stroke, epilepsy or tumor are disorders of the brain which have a impact on the body, but the physiological impact of disorders of the mind, O’ Sullivan, argues, should be treated as no less real. This is a book in which patients are never objectified but treated with a thoughtfulness and compassion that is also rigorously ethical. The same approach characterises Henry Marsh’s extraordinarily humane Do No Harm: Stories of Life, Death and Brain Surgery (2014). If you have any sort of passing interest in neuroscience and neurosurgery I heartily recommend both of these books.

The narrative position of the neurologist is certainly a privileged one (few of us might claim to understand the operations of the brain) but often the neurological patient can write from a position of privilege too. I reflected on the particular privilege of patients after reading the important memoirs of two fellow young stroke sufferers, Robert McCrum and Jill Bolte Taylor. A doctor recommended McCrum to me because his stroke “was quite like yours”, as well, I think, because we both hailed from literary fields. McCrum is undoubtedly a good writer, and the book’s opening sections are quite brilliant at putting the distinctive horror of actually having a stroke into words. The book also offers moving testimony of the deeply loving and supportive relationship between McCrum and his wife, Sarah which makes it well worth reading. But I had questions too. Following his stroke, McCrum received private care in an exclusive London hospital. For me, there was a little too little acknowledgement of the unusual privilege of his post-stroke position, and a little too much name dropping from the Ivy and other metropolitan celebrity haunts. Reading the book because I was primarily interested in McCrum’s experience of stroke and recovery I personally could not give a hoot whether it was Salman Rushdie or Jeremy Paxman who turned up at his bedside with yet another magnum of restorative champagne.

Still, I found McCrum’s account intriguing both because he was honest about his experiences (he spends a lot of time deeply angry and frustrated) as well as because, as the agent of his own narrative he also seemed curiously passive: he is constantly “waiting” for movement to return, “waiting” to recover function, “waiting” to return to his old life. The title of the book – My Year Off – weirdly reinforces this sense of the stroke sufferer as a passive object, and for me immediately begged the question: a year off what? “Normal” life? But what is “normal”, anyway, following a stroke? McCrum’s stroke forced, as he acknowledges, a catastrophic break in his life’s narrative, but from the title of the book you might assume a stroke was little more than some sort of yuppie sabbatical. For me personally, recovery in the months immediately following my stroke was a demanding job all in itself: rather than having “a year off” work, I was in fact engaged in the hardest work I’ve ever done. (And the work of recovery is still ongoing)

Though McCrum thoughtfully articulates some of the frustrations involved in stroke recovery, he gives little sense of the agency of the recovering patient. The precise opposite is the case with Jill Bolte Taylor. Reading My Stroke of Insight one is left in no doubt at all that the author is an active agent in her own narrative. Her account of observing and dealing with her deteriorating brain during the process of her stroke is completely extraordinary, and it is worth reading the book for these opening chapters alone. Speaking personally, I found it interesting that neither she or McCrum were afraid during their strokes, and that both describe how their brain responded to its own destruction with a kind of curious detachment. This matches very precisely with my own experience and I can quite honestly say after observing the behaviour of my brain in the moments during and following my stroke that the physical experience of death is one that holds no particular fear for me. I am pretty sure Jill Bolte-Taylor would say the same.

Bolte-Taylor’s distinctive ability to narrate the destruction and reconstruction of her brain comes from the very particular position of an expert in neuro-anatomy (prior to her stroke she was working on the physiology of severe mental disorders like schizophrenia). But the undeniable authenticity both of Bolte-Taylor’s experience and her expertise is what, for me, makes her book troubling, and not a little dangerous.

The Stroke of Insight of the book’s title is Bolte-Taylor’s perception, following the haemorrhage and clotting in her brain’s left hemisphere, of the interconnected rather than discrete nature of selfhood. Having a basic understanding of the relationship between phenomenology and neurology, I can see how one might certainly argue that reality is fluid and that the boundaries of the self are one of the human brain’s many convenient fictions: since the moment of our birth, one of the brain’s principal tasks is to define us – our bodies, and our minds- as things of edges. These edges between us and the objects we encounter are what allow us to function effectively in the world from developing the skills of proprioception (an awareness of our bodies’ position in space) to appropriate social behaviour. With her brain’s edge-making centres destroyed, one of the effects of Bolte-Taylor’s stroke is the perception that Everything is Connected, but rather than examine this concept carefully and philosophically, she instead espouses a vague mysticism that I find all the more astounding because it comes from someone with a rational scientific background. And beyond the suggestion of the fluid nature of all things and a newly empathetic awareness of her fellow humans, it is quite hard to precisely grasp the nature of Bolte-Taylor’s “insights”: indeed, her account of connectivity bares close resemblance to several rather hackneyed late twentieth-century accounts of the effects of psychedelic drugs (it’s worth noting that she’s is extremely judgmental about the recreational use of either drugs or alcohol). With the zeal of the newly-converted evangelist, she writes of her refusal to engage with negative people due to the “energy they bring” and her miraculous post-stroke abilities to actively choose between the states of compassion and anger. When she talks about how selecting “angel cards” helps her to structure her day, I’m afraid I completely lost patience with her. Angel cards are not going to help you with the day-to-day struggles of disability or brain deficit and, as a fellow stroke sufferer, I felt deeply insulted. To me, Bolte-Taylor’s fuzzy notions about the Great Spirit and Mother Earth are even more troubling than religious dogma because they do not acknowledge the partiality of their own position, their own deeply ideological nature.

And I’m not sure the actual science of the book stands up to much scrutiny either. Bolte-Taylor argues that her stroke allowed her to reject her boundary-obsessed, rational, masculine left brain in order to her embrace her compassionate, feminine, fluid, creative right hemisphere. (The value-laden nature of these terms are all acknowledged by her in her book). I’m no neurologist, but even I know that here she’s espousing a simplistic, dualistic model of the brain that has long since been discredited. As Bolte-Taylor herself well knows (and as her experience of recovery indeed testifies) the brain is characterised by its flexibility, adaptability and plasticity, and such oppositional left side / right side models of neurological function are as outmoded as a Victorian phrenological head. One key irony of her book, it seems to me, is that her loosely spiritual “insights” into the interconnectedness of life, the universe and everything, are falsely predicated upon one essential boundary: the one dividing left from right.

Bolte-Taylor’s book has proved enormously popular among a general audience. Perhaps that is because we all want to hear that one of the worst things we can imagine – a terrible injury to our brains – can, in fact, be transformed into a wonderful gift. I do wonder, though, how popular the book is among the stroke sufferers to whom it is frequently recommended, who do not regard their disabilities as a gift, who have experienced no great spiritual insights into the nature of the human condition as a result of brain injury, and have no sense of their stroke as a mechanism that enables them to turn their emotions on and off.

As I work on my book I think I may find it useful to keep a record of my thoughts and my reading. If you are just here for the knitting there’s no need to read these posts!

Books mentioned in this post:
Oliver Sacks, Awakenings (1973)
Allan Ropper & B.D Burrell, Reaching Down the Rabbit Hole: Extraordinary Journeys into the Human Brain (2014)
Suzanne O’Sullivan, It’s All in Your Head: Stories from the Frontline of Psychosomatic Illness (2015)
Henry Marsh, Do No Harm: Stories of Life, Death and Brain Surgery (2014)
Robert McCrum, My Year Off: Rediscovering Life after a Stroke (1998)
Jill Bolte-Taylor, My Stroke of Insight: A Brain Scientist’s Personal Journey (2006)