Letters, p.53
Letters, page 53
I like to think—your reviews make me wonder—about the positive power of TV: for example, to present, in the most sympathetic and illuminating way, (say) people with diseases, or (what often seem) repugnant or stigmatizing or alienating conditions, in the hope of reducing the repugnance, etc. This, indeed—tho’ not consciously—is one of the roles of my own writing, to enlarge the sympathetic imagination; and I carry a camera as well as a pen, because I think the image here is even more potent than the word.
Again, thanks
Oliver Sacks
To William Stokoe
American Sign Language Linguist[*44]
May 25, 1988
119 Horton St., City Island, NY
Dear Bill,
What a brave, fine, heart-rending letter—I feel for you. I had no idea of the tragic situation you were having to face at home.
I don’t know that I can tell you anything you have not already discovered for yourself—the patient, the family, are the only “experts” here. The good moments are very real—the EEG can suddenly change, become almost normal, in these moments; and though they are sometimes “spontaneous,” “out of the blue”—if anything is—they more usually come when some personal association is touched (as with us all, perhaps). But it can be so striking when so much of the mind’s formal powers are gone. A smile, a touch, a shared memory, a piece of music, smells, Spring (or something seemingly trivial, like a “Dunkin Donuts”) can suddenly elicit one of these brief, sometimes tantalizing, but very real “good moments.” But certainly your presence, and (redoubled) love and care is crucial.
But (if I may say this) you must not cut yourself out of life, out of your life, too much for her. You should not feel you have to be with her every moment of the day. It may indeed be that someone needs to be with her every moment of the day—but you must share the task with others (for her sake, as well as your own).
I would not say any of this if you did not ask me—and I may be speaking improperly. After all, I don’t know your wife or yourself, and there are no general rules—there are only individuals. I hope that what I have said does not produce discouragement—or offence. […]
With warmest regards to you,
Oliver
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In 1988, OS published “The Divine Curse,” an essay in Life magazine about a community of Mennonites in Alberta, Canada, with a very high prevalence of Tourette’s syndrome. Orrin Palmer, a young doctor who also had Tourette’s (and whom OS had met a number of times), wrote to express his reservations about the article.
To Orrin Palmer
Psychiatrist
October 12, 1988
119 Horton St., City Island, NY
Dear Orrin,
Many thanks for your letter of the 9th. It was indeed, as you say, quite an angry letter, but I am glad you were able to write to me—for such anger is best expressed, if it can lead to anything constructive—though sorry, and surprised, you should have had such reactions. I will add that I have had upwards of a hundred letters about the LIFE article—many from people with Tourette’s—and yours has been the only one with such negative reactions.
But, as you say in your postscript, it was not your intention to offend, but to open a discussion, and I shall take it in this spirit. I think your reactions are legitimate, as I think my own writing and viewpoint are legitimate. It will help to clarify both—for these illustrate (as I wrote in my earlier letter) the possible ranges of reactions to TS, and the range of perspectives in which it can be intelligibly seen.
But there is a need, first, to dissociate myself from certain things I did not say or write, but which were put in my mouth, as it were, by editors or journalists. I was angered myself by the proposed title of the piece, and threatened to withdraw it if they did not change it. I was informed that I could not withdraw it, and that it was the Editor’s prerogative to give a piece any title he chose. There was nothing else I could do in the circumstances. […]
Let me come to the meat of the matter. You take objection to my speaking of “prehuman” behaviours in TS (and interpret this as my seeing people with TS as prehuman). Here I must remind you of my own considered words in the matter, which you may find in Awakenings pp. 292–3 (enclosed).[*45] I did indeed think that a number of my post-encephalitic patients, when excited by l-DOPA, showed phylogenetically-primitive (“prehuman”) behaviours, probably due to excitatory lesions in the upper brainstem. I never saw such behaviours in any other patients—until I encountered some patients with severe TS (and this because such patients, like some post-encephalitic patients, may also have—even if not anatomically demonstrable—pathophysiological excitations at this level in the neuraxis): my interest in TS, as you know, originally stemmed from my observations of excited post-encephalitic patients, and my seeing—as von Economo had done in the acute epidemic—a sort of “tourettism” in them: I think P-E syndromes provide the best model we have for certain Tourettic syndromes. […]
MY OWN perspective is indicated in these pages from Awakenings, where I speak of “phylogenetic depths which all of us carry in our own persons,” and of such behaviours as showing us that “man’s descent is indeed a billion years long,” i.e. my observations and my perspective, here, is a Darwinian one—which is why I quote a relevant passage from Darwin. I think all of us carry our phylogenetic (as well as our ontogenetic) history within us—and that certain unusual conditions (viz. some forms of post-encephalitic and Tourettic disorder) can, through a physiological excitation or disinhibition, reveal these. My excitement at observing this was a purely scientific one—and no different from my excitement at observing that “branchial myoclonus,” so-called, which may be associated with excitatory lesions of the lower brainstem, causes rhythmic movements of the palate, stapedius, thyrohyoid muscles, etc, i.e. vestiges of the gill-arches: that it is, in effect, a persistent or vestigial gill-movement, something of immense phylogenetic antiquity, which shows us that something as primitive as gill-movement and its neural control is still part of the repertoire of the human nervous system (which shows us, if you will, “the fish in man”). Obviously I do not view patients with branchial myoclonus as fish! Any more than I see people with post-encephalitic or Tourettic syndromes as pre-human or non-human. I think that someone drawn to biological psychiatry, as you are, should be deeply interested in such biological possibilities, and am amazed that you could so misinterpret what are (and intended as) objective scientific observations as a sort of “racist” slur on people with Tourette’s—the imputation that they are less than human. […]
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The second general theme in your letter has to do with what might be called “play”—the tendencies of people with TS (as I see it) to “play” of various kinds. I first wrote of this with regard to some post-encephalitic patients (see p. 289 from Awakenings, enclosed),[*46] and then with regard to some Tourettic patients (I speak in Witty Ticcy Ray of “an odd elfin humour and a tendency to antic and outlandish kinds of play”). You take great exception to this—even though you must have observed it yourself in innumerable people with TS. It seems to me that this stems from your misinterpreting (my use of) the word “play,” as you misinterpret (my use of) the term “primitive.” I think there are (at least) two sorts of “play” here. One—the more usual sense—is play in its “creative” sense, the sense in which Winnicott writes about it in Playing and Reality, and in which he sees it as the one way of escaping or mastering or transcending “the bondage of the instincts.” What is here involved is a response to psychological or social situations—and such “situations” are all too common for people with Tourette’s—“carrying off” such situations, situations of potential uncontrol and embarrassment, with wit and high humor. This is, if you will, a defensive or adaptative form of play. A second form has a clear physiological quality—I have seen similar forms in postencephalitic patients, and in some patients with cerebral disinhibitions (“witzelsucht,”[*47] etc)—and this is “biological,” not defensive or adaptive, and has a driven quality, half-compulsive, and half-playful. You must have seen countless examples of this—for example, Lowell, in some of his excited moods, opening provocative or (playfully) outrageous conversations with everyone in the street (or, in his own words, “playing the Tourettic fool”). Or the Tourette-twins, in Atlanta, yelling “Shark, shark!” on a crowded beach.
There is, of course, a great range of TS—(as I indicated in “Witty Ticcy Ray”) from very simple forms (which are hardly more than myoclonus) to the most elaborate behavioural disorders. Bye and large, I think one can hardly even consider tourette’s (if one wishes to go beyond a sort of idiotic DSM-III type listing) WITHOUT considering “play” of various sorts. And it is at this point, as Lowell himself indicates, that Tourette’s can become interwoven with the highest (and, potentially, most creative) parts of the personality. You seem to see (my use of) “play” as something “frivolous,” “not serious,” derisory; on the contrary, I regard play as the highest form of human activity. It is in this sense that Winnicott speaks of it; in this sense that Huizinga writes of “Homo Ludens.” Thus, when I speak of the “playful” in relation to Tourette’s, I am speaking of adaptive and creative functions of a high order. […]
I am not unacquainted with affliction—as you seem to imagine (in, for example, your image of the scoffing aristocrat). I have spent more than twenty years among patients with the most dire neurological afflictions. Awakenings, itself, is an essentially tragic work—a study of affliction, and a meditation upon it. And the sense of affliction, if it be crushing, hardly permits any room for humor or play—although it permits (and, indeed, demands) some sort of accommodation, otherwise life would be intolerable: I speak of such accommodations—courage, resignation, the sense of “the will of God,” etc.—in Awakenings—and Simone Weil ponders these matters in her profound and poignant essays on affliction and the love of God. It is crucial, if one has been afflicted, that one does not give way to bitterness and rancour, to cursing the world (or, like Job, cursing God); it is essential that one preserves one’s self respect, and does not see oneself as reduced to indignity. I hope, for your own sake, that you can do this.
I understand this deeply—because I have worked with the most deeply-afflicted for years. I have a profound respect for Affliction, and the Afflicted—this is at the heart of my physicianhood and personhood—and, had you not been carried away, you would surely have seen this.
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The third and last general point in your letter refers to what might be called “the medical model” of Tourette’s—or, as you put it, “Tourette’s as a medical condition”—your feeling that this is the only way of regarding it, and that I have transgressed it.
While I fully respect the medical model—and my own writings (Migraine, etc.) are examples of it—I think that one must go BEYOND it, especially when dealing with such a matter as Tourette’s. The medical model, one might say, deals only with “pathology” and “therapy”—with Tourette’s, for example, its “signs and symptoms,” its presumed or actual biochemical substrate, and ways of treating this. Dr. Shapiro,[*48] here, has performed a major service in delineating Tourette’s as a medical disorder, and the “purely medical” approaches to it—Lowell says, jokingly, that he is “the world’s most powerful dopamine-antagonist.”
But, as you should be the first to know, Tourette’s is not just “signs and symptoms.” The concept of disease itself has to be expanded—Jelliffe and Mackenzie wrote of this with great insight in regard to encephalitic and postencephalitic pictures—to include not only the direct effects of the lesions or dysfunctions, but all the adaptations and accommodations the organism may make, at every level from the neurological—to the social. Properly defined, Medicine is the study of these adaptations: I indicate this in the preface to Hat, and in the Mackenzie[*49] quotation I use as epigraph: “The physician is concerned (unlike the naturalist) with a single organism, the human subject, striving to preserve its identity in adverse circumstances.”
It is for this reason that I have expanded my presentations from case-histories or “pathographies,” in the narrow sense, to human narratives or biographies, that I have presented what might be called the human face of disease. This human and humane attitude has been almost universally recognized in my orientation and writing—you will find an article on it, indeed, in last month’s issue of the Annals of Internal Medicine[*50]—and it is ironic, therefore, that you tax me with exactly the opposite, with an inhumane (or, to use your word, “dehumanizing”) attitude towards, and descriptions of, patients.
I would indeed, at this point, especially with something like Tourette’s—but also with a condition like deafness, which I am deeply interested in (I take the liberty of enclosing a recent article on the Deaf, and am currently completing a book on the subject)—go even further. It has been felt by the Deaf that they have been subjected in the past to an exclusively “clinical” or “pathological” attention—seen as diseased, defective, otologically impaired, “oral failures,” etc—and not in their own terms (as people with a language of their own—Sign; who form communities and cultures with their own centers and perspectives). In one sense (a purely “clinical” sense) a deaf person may feel himself handicapped; in another (a “cultural”) sense he may feel himself different, a different being, living in a different mode of being, from the Hearing—but feel that mode as legitimate and complete. Thus the purely clinical or “pathological” attitude to the deaf must be supplemented by a different and more neutral attitude—one which one might call “anthropological.” This sees the deaf on their terms, not “ours.” Although one would hesitate to push the analogy too far with Tourette’s, I think it necessary to see (at least) some people with Tourette’s in terms other than the strictly pathological or medical. One of the profoundest and [most] open-minded observers of Tourette’s—your colleague Dr. Ben van de Wetering, in Holland—has said that at times he cannot see TS just as a disease, but has to see it “as a mode of being.” This may scarcely apply to some people with TS—it may scarcely apply to yourself—but it is a form of description that is legitimate, and (I think) demanded, in relation to some others, and to what might be called “a Tourettic life.” This is not antithetical to the medical model—it supplements it by an ontological, or anthropological model. And it is one of the things which I shall try to use, if relevant, in my own studies of TS. Though, on the other hand, one needs all sorts of advances in neuroscience, one also needs, with Tourette’s, such a “neuro-anthropology.”
This is not at once obvious, or easy to take in, in those with a medical background and training; indeed it arouses an immediate resistance. I have had to struggle with this resistance myself. And you too, if you are to expand (as I hope you will) into the fullest intellectual and human understanding of Tourette’s—you too will have to deal with this resistance.
I understand fully that such a broadening of perspective may be felt as quite threatening to you—as threatening your “identity” both as patient and doctor. It is simpler to see TS as “a purely medical” condition, requiring only “a purely medical approach.” You have been conditioned to think this way—both as a patient and as a doctor. You are subject (how can you not be?) to crushing forces—both the forces of your own Tourette’s, and your patienthood; and the forces of medical convention, and a narrow view of “doctorhood.”
A purely medical way of looking at Tourette’s promises (or seems to promise) not only an intellectual simplification—of something which may be bewilderingly complex, not only in itself, but in its interactions with the personality—but a way of controlling it. It is easier to say “You have—or I have—a purely medical condition, which can be controlled and treated, hopefully, in a purely medical way.” And yet—this may not do justice to the very deep and complex reality. And I think a broader and deeper way of considering Tourette’s, therefore, has to evolve.
You yourself—as a young man who both has Tourette’s (and must have an extraordinary “inside” experience and knowledge both of its physiology and of ways of adapting to this) and is also a biological psychiatrist—are in a unique position to understand it, and to explore it, with a depth as yet never done. Having Tourette’s, of course, can make this more difficult—one can be imprisoned (so to speak) in the perspective of the sufferer, as one can be imprisoned in the perspective of the “purely medical”—yet it can also assist one to a wider perspective. I am sorry you have misunderstood my own gropings towards a wider perspective—and hope they may be clarified by this letter; and I hope that you yourself will move beyond your present perspective into a wider and more spacious one. It will be a great struggle—intellectual and personal—and it may not alter your Tourette’s as such; but it will reduce your feeling (at times intolerable, I am sure) of conflict and constraint, and give you one of spaciousness and freedom.
