Physician, Heal Thyself: Neurologists Who Have Disorders.

In the initial stage of my project on medieval scribes and neurology, I am reading about as many neurodegenerative conditions as possible. The aim is to be clear about which disorders present which symptoms, why, and in whom. Consequently, I hope to investigate neurological disorder in medieval people in an informed manner, in a way that reflects back and forth between medieval history and modern-day neuroscience.

     In doing this groundwork, I’ve encountered the lives and works of two neurologists whose lives were, or are, touched by the very disorders that they research. The first carried out the majority of his clinical work in the opening decades of the twentieth century and the second is a very well known clinician who is alive today. It has occurred to me how interesting it is that a scientist may have one of the disorders that he or she researches, perhaps without yet presenting any of the symptoms. Alternatively, he may be very aware of their condition and may use his personal experience to feed into his work, thus demonstrating exceptional empathy with his patients. The thought has certainly passed through my mind that I, who have just started a project on Parkinson’s Disease, may very well have it myself.

Henry Head

Image     The Guardian’s Science Pages recently described Henry Head as one of the one of the ‘hardest men and women in science’. This is because he is well known for operating on his own arm, to see how sensation was affected when nerves were cut off and allowed to heal. However, aside from headline-grabbing self-surgery, this ‘balding, bespectacled physician’, was also a bright neurologist of the early twentieth century. His Cambridge MD thesis was published in Brain, and, as mentioned above, he did important and accurate work on pain and physiology, and the correspondence between the skin and the nervous system. Eventually, though, Head’s career was limited by the symptoms of Parkinson’s Disease and he, in 1919, retired to live as a neighbour of Thomas Hardy in Dorset. He stopped all his professional duties by 1925 [1]. However, he continued to publish well-regarded works, including one on speech disorders in 1926.

      Fascinatingly, Head’s handwriting was showing signs of micrographia – miniscule script, which is a  key characteristic of Parkinson’s Disease – as early as 1906, thirteen years before he retired [2]. As early as 1899, twenty years before his retirement, his handwriting was already showing signs of being smaller than usual. As J.S.M Pearce, in the article I’ve been drawing from, says, this is crucial information, as it shows the sequence of symptoms of Head’s neurological disorder. Head was able to work, showing symptoms of Parkinsonism but apparently not critically hindered, for decades. Did Head know he had Parkinson’s by 1899, or 1906, when his handwriting began to decrease in size? I have not yet found out. It is hard to imagine that such a talented neurologist, or one of his colleagues, did not notice his own increasing difficulty with writing. However, it is not impossible to believe that he would not have prioritised his own disorder. After all, he had a promising career to start, and patients to treat. The neurologist Silas Weir Mitchell, who had Essential tremor, appears to have avoided confronting his own debilitating symptom: his tremulous hands. When concerned with tremors, his clinical notes seem almost consciously vague –  perhaps this was a method of self-preservation? [3]

Oliver Sacks

Image     Oliver Sacks is possibly one of the most widely-known known neurologists. His bestselling book, The Man Who Mistook his Wife for a Hat, is on many bookshelves and has even been adapted into an opera by Michael Nyman. I recently discovered a TED talk by Sacks, which explained a common condition that many of us will have never have heard of, called Charles Bonnet syndrome. If you have the time to watch it, I would highly recommend it, as Sacks is both informative and entertaining. It is, as he says in the talk, important that more of us are aware of the syndrome.

     Charles Bonnet syndrome, which is common in people who have lost their sight, and thus is most prevalent in older people, can make people feel that they are going ‘mad’. People with CBS might worry that people around them think they are ‘crazy’ or ‘senile’. This is because the condition features vivid, and sometimes surprising, hallucinations. However, unlike some hallucinations, these images are like a movie show: the person observes, but is not part of the action – he watches, but he cannot interfere. As Sacks finishes his TED talk, the host says: “you speak about these conditions with such insight and empathy. Have you, yourself, experienced any of the syndromes that you write about?” Sacks replies, with a smile, “I was afraid you would ask that”. He continues, “a lot of them”. Sacks is blind in one eye, due a malignant tumor. In addition, his sight in his other eye is not good, and he suffers from prospopagnosia, wherein the ability to recognise faces is impaired. His difficulty with identifying people extends to his own face, which he describes with his characteristic narrative flair:

““[O]n several occasion I have apologized for almost bumping into a large bearded man, only to realize that the large bearded man was myself in a mirror” [4]

He experiences geometrical hallucinations, typical of Charles Bonnet syndrome.

     Sacks has been credited, and occasionally derided, for pioneering a kind of ‘Romantic Science’, where the patient’s experience is prodded into the foreground. His work creates a ‘new form of clinical narrative’, promoting each patient’s accounts of his or her condition it as a force that can be effective in self healing. [5] The Man Who Mistook His Wife For a Hat opens with the words of the Soviet neurologist A. R. Luria, who sent Sacks the imperative: ‘Publish such histories, even if they are just sketches. It is a realm of great wonder’. Indeed, Sacks’ books are full of patients’ stories.  How appropriate, then, that such a master listener and recorder of neurological narratives should have one of his own.

     Tom Shakespeare, academic and disability commentator, has mocked Sacks as, ‘the man who mistook his patients for a literary career’. Critics like Shakespeare believe that he’s exploited the personal narratives of his patients for his own literary credit. However, I, like many others, disagree. We all push though out lives as part of stories. We are narratives, inside narratives, inside narratives. The work of Oliver Sacks illuminates how stories – tragic, comic, baffling, sweet – are integral to neurology. His accounts are detailed, occasionally humorous, but always sensitive. They remind us that neurological disorder is ‘disorder’ in so far as it affects the lives, and stories, of the patient and those who love them. It is less important to a patient that there is ‘damage to the visual cortex of the brain’, than it is that he often tries to pick up his wife’s head instead of his hat. Henry Head was even part of a literary story, featuring in Pat Barker’s novel of First World War identity, narrative and attempted-recovery, Regeneration.

The biographies of Henry Head and Oliver Sacks shows that researchers, too, have stories, some of which their share with their subjects.

Notes

[1] J M S Pearce, ‘The Micrographia of Henry Head (1861-1940)’, The Journal of Neurolology, Neurosurgery and Psychiatry 79, (2008):  307.

[2] idid, 307.

[3] Elan D. Louis, ‘Silas Weir Mitchell’s Essential Tremor’, Movement Disorders 22:9 (2007).

[4] Oliver Sacks, ‘Face Blind‘, The New Yorker 2010.

[5] Andrew John Hull, ‘Fictional father?: Oliver Sacks and the Revalidation of Pathography’, Medical Humanities 39: 2 (2013): 105-114.

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