Letters, p.44
Letters, page 44
As you will see, I didn’t think to see his dementia and Parkinsonism as a single clinical/aetiological entity until—today. So, my notes have no bias in this direction! However I could provide similar case-histories, more or less, for every week in the year.
I don’t say this is an entity, but I do say it is different in various ways from either “senile dementia” or “Parkinson’s disease,” in that these tend to run slow courses of 15 years or so, and usually without much admixture (at most a little dementia in the ordinary Parkinsonians, or a little Parkinsonism in the “ordinary” dements). This rapid (2–5 year) course of Parkinsonism-and-dementia conjoined sets apart a sub-group (perhaps several sub-groups) of patients; as does their extreme lability of function, and pharmacologic hypersensitivity. In one such patient, a former dancing teacher around 50, the course from first symptoms to profound and terminal dementia and Parkinsonism was no more than eighteen months (she was among my first L DOPA patients in 1969).
Would you be interested in further work-up/biopsy, on this chap? I think the family and Sisters etc. would go along. Alas! As I mentioned to you, autopsies have virtually ceased at Beth Abraham—it happens however that we did have one autopsy recently on a man I had followed closely with this dementia-Parkinsonism syndrome, who was full of tangles, etc. and said by neuropath. to be “typical of Alzheimer’s.”
Oliver
To Robert Katzman
February 5, 1980
11 Central Parkway, Mt. Vernon, NY
Dear Bob:
I seem to be inundating you with letters etc.—I get these paroxysms from time to time—but this will be fairly brief, and the last of the quartet.
Obviously some of the specific points which arose have forced me to consider more general issues—with regard to possible approaches to these patients.
Specifically, this has been in my mind today with regard to the Alzheimer patient (or couple) I have been seeing, because it is such a family situation. You had originally, I think, envisaged me as an “investigator,” and not a “physician,” with regard to these patients. And I myself would have preferred this to be so, and to avoid any “involvement,” distress, etc. But I have had to “get involved,” or be concerned, willy nilly, because I am dealing with a person—and not a “preparation.” […]
In the Preface to my Migraine, twelve years ago, I wrote “I was…delighted at the complexity of the histories I received…Every patient…opened out, as it were, into an entire encyclopedia of neurology. I was recalled from my neurological preoccupation by the suffering of my patients and their appeals for help.” And so it has been with these Alzheimer patients. I (one) cannot be just an “investigator” and not a physician: at least I cannot; if they were faceless members of a series, having standardized tests of one sort and another, I could; and obviously this sort of quantitative investigation must be done. My own sort of investigation is essentially qualitative (this does not make it any less precise—only, more delicate, and complex): a qualitative neuropsychology, with kinships to Luria’s; but, again, one which I cannot detach from human responsibilities and concerns.
Basically, perhaps, I am “a naturalist”—nice, old-fashioned term—and all my other interests (in psychology, neurology, physiology, etc.) are subordinated to the Naturalist in me. As a child, I read Bates[*3] on the Amazon, Speke[*4] on the Nile—I was imbued by the spirit of adventure, exploration (of a sort at once scientific and romantic). This spirit has transferred itself to my clinical work: I regard every patient as an Amazon, as a Nile—I see landscapes of disease, physiognomic, geographic. I do not know in advance what is “relevant”—which makes it difficult or impossible to draw up programmes or projects of work beforehand. I have to ramble, to meander, to explore—not knowing in advance what I may find (though, hopefully, prepared and open for finding(s)). Exploring a realm, one cannot confine one’s attention to this or that (although, obviously, there must be a deep, perhaps unconscious, selectivity). One doesn’t know in advance how all the fauna and flora will relate, how everything will fit into an immense “eco-system” (I see I am unconsciously paraphrasing, at least, the title of Gregory Bateson’s Ecology of Disease[*5]—I know the title, but not the book!) […]
One must see (or, at least, be in a position to see) everything which is relevant in/to the life of the patient—if one is to be either a naturalist or physician. I do not see how this is possible in the context of a clinic—where, so to speak, a patient is torn out of their natural setting, and seen only in a narrow and artificial way. One needs to see the patient in their natural setting—“at home.”
I found this very strikingly with that most fascinating patient Hans H. (with the object agnosia, etc.—the old musician).[*6] I could not make sense of what was going on when I examined him at [the clinic]—also, I could not examine him adequately (for example, I needed a tape-recorder and a piano! And I needed to see how he conducted himself in his own surroundings—at home). Only then could I begin to comprehend what life might be like, both for the patient, and for everyone else, for a rather gifted man with a most profound visual agnosia. […]
I am sensible of how poor my observations of [this patient and her husband] are (in a way), because my information has been restricted to seeing them in the Clinic, and phone calls from the husband. […] It seems to me that I have learned less of this patient than of somewhat comparable patients whom I have seen in Institutions. […] Because, in a way, an Institution is like a little world, and, especially in one like Beth Abraham, where I know every patient, every nurse, every therapist, every current and nuance of life which goes on, I can be something of a Naturalist—and Physician: I am able to observe, and (to some extent) influence, a whole world—although (of course) it is a miniature world, a special world, a tragic world, and an exiled world, no longer entirely in the large world.
It is partly this cut-off quality of institutional life, the little institutional world, this sense (sometimes) of working in a leper-colony, which has made me want to see some patients who are still in the great world; who have not yet been “put away,” restricted, confined.
But, I have found, if I can generalize from this experience with one patient, that I cannot learn as much in a clinic setting, as in an institutional setting (no doubt Hughlings Jackson found the same, which is why his most valuable observations were made in—Asylums, the West Riding asylum, etc.). On the other hand, if I confine myself to Institutions, I see only the most advanced cases, the sickest, the worst—I have no possibility of seeing what it is like in the early stages, how the person copes, and how their family, friends, everyone, copes with them.
I think one can only see this if one has some domiciliary practice—if one goes into their Homes, as an observer, at least; and, perhaps, as their family physician—at least the Family Physician with respect to the Alzheimers. I think that most essential observations may fail to be made in a clinic, and cannot even in principle be made in a Clinic. I think experience of such patients at home, and perhaps in day-hospitals, and various programmes, is absolutely necessary to getting a full picture, to seeing the ecology, and not just the neuropsychology and physiology, of this disease.[*7]
I better stop now—or I will run onto another page. I will keep my promise, and make this the last of the four!
With kind regards,
Oliver
* * *
—
In November 1980, OS bought a small house on City Island, an island off the Bronx that is home to a number of boatyards and boatbuilders. There he kept a rowboat, and he could swim or row in the waters of Eastchester Bay or ride his bicycle up and down City Island Avenue. In addition, he had a dining room that would provide space, after his father’s death in 1990, for the Bechstein grand piano from Mapesbury Road. He hired a handyman to build bookshelves in every room, including the kitchen and basement.
To Stanley Fahn
Neurologist
April 14, 1981
119 Horton St., City Island, NY
Dear Stanley,
[…] I was going to phone you—for help—last week, in regard to a patient at the Little Sisters Home (“Holy Family”) in Brooklyn, but she seems to have settled a little. An intelligent (perhaps psychotic) old lady with the most tremendous Parkinsonian “drive” I have ever seen—at least, in a non-DOPA, non-post-encephalitic patient. She was constantly running—if not into walls, then into exhaustion, so much so that I feared for her life. She could not sit—every two seconds or so one felt this sudden surge or urge take hold of her. DOPA/sinemet seemed to make her worse, and haldol stupefied her…I had hoped St. Barnabas which is my first port-of-call, whenever I run into neurological problems at the Little Sisters, could help—but she was no better when she returned from them. Mercifully, we have found she has a great passion, and a great flair, for sewing—she sews with incredible speed, and perfect precision, and when she is sewing she is free from the blind, mad force of the subcortex: the moment she stops sewing, she reverts into violent, almost suicidal, Parkinsonism. At present, we are tearing up everything in the House, so that she can sew it together again! However, this may be only a temporary measure: and I may have to send her to you—her name is Rose T. […]
With best personal regards,
Oliver
To A. K. Brenner
Correspondent
April 28, 1981
[No Address Given]
Dear Ms. Brenner:
Thank you for your interesting letter—and your kind comments about my work, in the brief glimpse you saw of it on the Dick Cavett Show.[*8] You must read “Awakenings”—and, equally, see the film[*9] (which has often been shown on public television in England, alas! never here).
I mention the film particularly because this is (amongst much else) about the unique power of music and dance in these patients—we are, indeed, one of the few such facilities in the State to have a full-time music-and-dance therapist.[*10]
I regard all living movement, all “life,” as dance—of a sort (in the universal sense of Havelock Ellis’ book The Dance of Life); and, specifically and practically, I think the only way of gaining or regaining propriety and grace of movement, after this has been disturbed by some movement-disorder (as a neurologist, my concern is with disorders on an “organic” basis), is through dance. My conviction of this was confirmed by a personal experience—the leg injury I spoke of briefly in the (second) show, which deprived me for three weeks of the ability, and even the idea, of walking. That I did walk again, and recover my motility, I owe no less to music (it happened to be Mendelssohn!) than to neurological recovery.
I do not think of dance as an “additional” treatment-tool, but an essential, and quite central, one! […]
So, you see, I am entirely in sympathy with your ends and means; and do what I can to promote these in the tragic but inspiring world of Asylums, Institutions, Chronic Hospitals, etc. where I spend my life working among the incorrigibly damaged.
With my best wishes,
Oliver Sacks, M.D.
To Vanya Franck
Actress
May 10, 1981
119 Horton St., City Island, NY
Dear Ms. Franck:
Thank you very much for your kind and most interesting letter—I was quite inundated by letters after the Dick Cavett show, and can only answer some of them—belatedly, and inadequately. […]
I am sure, as you say, that one of the special distresses of Parkinsonians is the frustration of normal emotional expressions—even the basic outlets of laughter and tears (not that they lack deep emotions; it is specifically their expression which is blocked). And certainly laughter and tears (for them, as for everybody) when they are possible, discharge countless tensions. I am entirely for any, every, form of therapy which releases—I was talking about this the other day to a “clown-therapist.” I see art and play as particularly vital—and active (in a way which “support” is not).
The sheer weight of tragedy—both the existential tragedy of a confined and ruined life, and the tragedy of incorrigible neurological disease—is colossal in these patients of mine. What astounds me, finally, is that so many of them survive—and as vivid, real, unembittered human beings. They have taught me, above all, what courage really is.
Needless to say, we provide what forms of therapy, counselling, etc. are available to us—but our resources, in all ways, are painfully limited. But I do thank you for the generous impulses which prompted your letter—and yes, it is curious, but there can be a sort of intimacy about television—though only if one keeps one’s real face, and avoids a sort of public face (“Private faces in public places/are wiser and nicer than/public faces in private places”).[*11]
With my thanks and best wishes,
Oliver Sacks, M.D.
To Walter Parkes
Film Producer[*12]
July 14, 1981
[No Address Given]
Dear Walter,
[…] I feel—perhaps—I put you off, in various ways, without meaning to, or, perhaps, realizing what I was doing. I forget, for example, what a shock Beth Abraham must be to an “outsider”—and yet I see this, constantly, in every student or resident or anyone who first comes: they get overwhelmed by horror, disgust, disquiet, despair etc.; and it is only later, perhaps after a couple of weeks, that a mysterious something else takes hold: a sense of a strange serenity, beauty, poetry; of humour, of courage—of the most inspiring order. One can see the Sickness, the Misery, the Affliction, straightaway—it takes time to see the mysterious Strength, the immense (and unexpected) reserves of health and Life. Partly for this reason […] I feel I may have been wrong to show you Beth Abraham (especially in its present deplorable state—so different from how it used to be, at the time Awakenings was acted-out and written). […]
One can pay a visit to Beth Abraham and see it as—purely awful. But (even now, in its present state) it does constitute an entire World, where passionate (and often comic) dramas are played out. A World—and an Underworld—and all that I say in Awakenings, and more. […]
I hope I haven’t “put you off”; on the other hand, it will have done no harm to show you a genuine complexity—one that will have to be purified and simplified, of course, by imaginative and romantic vision (as it was, already, in the book of Awakenings). […]
Which brings me, finally, to the start of my letter! The salient matter, the only one that matters, is your own sensibility, and your generous interest in my work and “vision”—and the sort of story (stories) I have tried to relate. That you should wish to present, or re-present, this story, these stories, is a great compliment, and a happiness, to me.
The real horror is lostness, oblivion; the real need to remember and represent—and compared to this, everything else shrinks into insignificance.
I felt this, quite overwhelmingly, when Duncan Dallas, who made the [documentary] film of Awakenings, revisited Beth Abraham in 1977—3½ years after he had made the film there. He was most movingly welcomed by the patients who were still living—they all remembered him, and the whole experience, with gratitude and affection. Duncan said then: “They seem to be de-differentiating, a lot of them going back into the Limbo from which they came.” In the moment that he said this, I felt it too, and felt overwhelmingly (and unreservedly) grateful and glad that I had written Awakenings, and that we had made a film too—that we had rescued, from Oblivion, a remarkable, almost fabulous, and yet real situation. It came to me—but this, indeed, is precisely what the patients themselves said, when they saw me obsessed with hesitation—that if I had not written Awakenings, permitted the film, etc. their lives would never be known—and, to this extent, with their help, I brought them into “history,” and made commemorations of, memorials to, their strange, unique lives.
By the same token, I am elementally glad and grateful for your own interest, because I see this as yet another way of celebrating life—and by remembering and celebrating an extraordinary life, the collision (or coalition) of a great soul in a wrecked body, so akin to the theme you are drawn to in “The Genius.”[*13]
