HOW DID YOUR CAREER AS A WRITER START?
When I was a resident at UCLA, I wrote a little book on myoclonus, and when the boards were held, I gave it for review to a neurologist who was an expert in this area. I waited eagerly and anxiously for his response, but after an inquiry, I discovered that he had committed suicide. In a bizarre way, I wondered if reading my thing had driven him to it. I didn't feel that I could request the manuscript from the widow, and I had no copy, so my first book was lost.
I began working at the headache clinic at Montefiore Hospital in the Bronx in 1966. It was a wonderful medical apprenticeship because of the huge and fascinating variety of patients I was able to see. It also provided a window into the nervous system and into people's lives. I read lots of existing papers and then one day I found a book on the subject of migraines in the rare book library at Einstein. It was Edward Liveing's On Megrim, a 500-page book from the 1860s, beautifully written, and I read it in a sort of trance. It moved all the way from the physiological to the sociological, a great example of mid-Victorian writing at its best. I thought, it's the 1960s, we should have a book like this — so reading that book catalyzed my own.
My book Migraine came out in a rush in 1967 (I wrote it in nine days or so). When it was published in 1970, one of its reviewers turned out to be a medical book publisher who asked me what I was interested in next. I told him I was seeing parkinsonian patients at Beth Abraham Hospital in the Bronx, and this publisher said, “Why don't you write another book exactly like Migraine, you've got a good formula there, just slot in Parkinson's where you would say migraines.”
I was unable to do this, of course — each book takes its own shape and form. Awakenings, my book about the post-encephalitic parkinsonian patients, was very different from Migraine. The case histories in Awakenings are much longer and more detailed, and there are whole sections of reflection and commentary in the book which are quite philosophical. The entire book grew out of one of the most intense medical human experiences of my life. [Awakenings, published in 1973, later inspired a play by Harold Pinter (“A Kind of Alaska”) and the Oscar-nominated feature film (“Awakenings”) with Robert De Niro and Robin Williams.]
DO YOU FEEL A SPECIAL RESPONSIBILITY IN TELLING PATIENT STORIES?
It is a great privilege and great responsibility, and, I should add, a temptation and a hazard to be given people's stories and people's lives. I feel it's very important, especially in neurology and psychiatry, to give fully detailed accounts of illness or damage or disease, and how patients respond to them. But, at the same time, there is a delicate matter of privacy and propriety regarding how much of a life you should disclose.
Formal consent is not enough. You have to consider whether a patient would be comfortable with something being written about them. First, I ask, in principle, how they might feel if I told their story or quoted their letters or something they've told me. Then, with most patients, I will send them what I've actually written, and ask them to correct it and let me know whether they would like me to use their real names, initials, or a made-up name. For example, in writing Musicophilia, I sent 160 people requests to review what I'd written. My general feeling is that if you write about people with respect, tact, and delicacy, they will not feel that their privacy has been violated, or that they are being exploited or betrayed. On the contrary, they feel that their experience may help someone in a similar situation.
DOES YOUR ABILITY TO ‘THINK OUT OF THE BOX’ AFFECT HOW YOU PRACTICE NEUROLOGY?
I'm always getting letters from people who say, I've seen 25 neurologists, but you think outside the box, so I want your opinion. And I write back to say, “Look, I have no magic, I am nothing special, and I don't think I can contribute anything that my colleagues have not already said or done.” And other times I will say, “I can contribute nothing but careful attention and curiosity.”
I don't feel I am particularly original, but I do think I have a sort of synthetic power, and I spend a good deal of time with every patient. I have seen a lot in a moderately long life, so things seem to come together. I would hardly call it “out of the box” as much as rather old-fashioned medical thinking. My father was a general practitioner and two of my brothers were general practitioners, and I partly feel like an old-fashioned doctor who tries to listen and take everything into consideration.
Whether people have Tourette's or Parkinson's or seizures, I will always inquire about the sort of life they lead, because I think this may need to be discussed and can perhaps be changed in various ways. But it is crucial, as a start, to spend enough time with a patient to establish a relationship, to get the whole picture.
HOW DO YOU RESPOND TO THE CHARGE THAT YOU ARE ONE OF THE MOST FAMOUS NEUROLOGISTS IN THE WORLD?
I have always been sort of amused and incredulous when I hear that. I am not only a neurologist, but a neurologist who gets into print. There is a special responsibility which goes with power, and a caution. I don't think this alters at all my attitude towards individual patients; when I see patients, they are the people who matter, fame or lack of fame.
TELL US ABOUT YOUR NEXT BOOK.
My next book is about vision and visual disorders. I am particularly interested in visual hallucinations, not the least because I have a few of them myself. I'm sorry I didn't write about them earlier. I deal mostly with elderly people who have often visual or auditory impairment and hallucinations on that basis. I first wrote about musical things in my Hat book [The Man Who Mistook His Wife for a Hat and Other Clinical Tales]. I should have also written about visual ones, because not only are they common, but also most people who have them are afraid to mention them. They wonder if they are going mad or losing their mind, and when they do mention them they are apt to be misdiagnosed. I think the whole subject needs to be brought into the open and defused.
WOULD YOU DESCRIBE YOUR PROCESS FOR WRITING YOUR BOOK ON VISION?
For the particular chapter I am working on now, I want to put together individual cases illustrative of different aspects of visual hallucinations. I have a working file entitled CBS (Charles Bonnet Syndrome, not the TV network). As sources, I've put together case histories on patients, published articles, some unpublished journals that have been kept by patients, and a few other papers I've written myself.
There is often an immediate precipitant, such as a patient I've just seen. I was called to see a lady in her nineties who was seeing things. The nurses thought she was going nuts, but when I went to see her, I discovered she had been blind for five years. She was completely intact and delightful, although rather bewildered. I listened to her and I examined her, and told her that there was nothing wrong with her nervous system and she was not going mad. I told her that this is not uncommon in people who are blind, and that it was originally described by Charles Bonnet. She was relieved and said, “Tell me more about Charles Bonnet and tell the nurses that I have his syndrome.” She was rather proud to have a name like this for her symptoms.
I will probably end up on a positive note about a poet who had been eminent in her youth but stopped writing poetry and became a professor of English and a scholar. In her eighties she became blind and started hallucinating, which inspired her to write poems again.
WHAT ARE YOUR OTHER PLANS?
I would love to see some parts of the world I have not yet been to — the Galapagos, above all, since I am in a Darwin mood. I just visited an incredible colony of lemurs at Duke University Forest, and have always wanted to go to Madagascar, too. And, touch wood, I feel like I still have quite a lot of good work inside me. Although I'm sorry about the arthritis and this and that, I'm glad and grateful to be alive, and I feel, at 75, that life is still very pleasant on the whole, and it still has promises of novelties, adventures, and surprises. I think that so many people think of aging in negative terms, equate it to Alzheimer's, or else they think of aging people as a nuisance or burden, but one way or another, I want to remind people that the latter parts of life can be fun.©2009 American Academy of Neurology
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