Letters, p.37
Letters, page 37
If I was unduly sharp or rude that evening, I apologise; and I must ask you to remember, in extenuation, that I am someone who has been silenced for the past seven years, by the pressures and powers of professional disapproval. I am a consummate observer, and an unprejudiced one (I have what I might call “a pure love for phenomena,” for every manifestation of Nature, whatever it is—Curiosity lies at the very core of my being). I have been privileged to see as much, or more, of Parkinsonian patients (and patients with all other forms of movement- and impulse-disorder) as anyone living; I can support my observations with films and tapes (you saw, that evening, how I walk round with a video-camera, because I want to catch as much as I can, including all sorts of things which I may find unintelligible or disquieting); I am honest, I am brilliant, I have made the best observations—and yet, damn it!—I find myself, I have found myself, these last seven years, virtually “unpublishable” in the Professional Press. By 1971, it was clear to me that almost anything I wrote would be rejected out-of-hand by most Medical Editors. In December 1970 I had found myself “attacked”—by [many colleagues]: attacked in a way which impugned my veracity and sanity. I wrote personally, and civilly, to all of these colleagues, inviting them to see me, and my patients, at “Mount Carmel”—none of them even had the courtesy to reply. […] A single brave medical editor—just one!—representing (and this is significant) general practitioners and not specialists, wrote a remarkable editorial[*13] in which he spoke of “the strange mutism” of the Profession in response to a book of outstanding importance, and one which was aimed and lodged at the very Heart of Medicine. […]
You, in your way, and I, in my way, wish to fortify our patients, to strengthen them against the insidious invasion of an ugly disease, and the special vicissitudes and dangers to which this exposes them. […]
Our approaches are wholly different, yet wholly complementary—What I took exception to, what I reacted to, on Tuesday, was your “passing-over” any and all non-pharmaceutical methods in the treatment and management of Parkinsonism: your speaking of Parkinson’s disease as if it were a purely chemical disorder, wholly treatable (at least in principle) by purely chemical means. As a clinician, as a former neuropathologist, and as a former investigator of the neurophysiology of the nature of “denervation sensitivity,” I know that Parkinson’s is not a purely chemical disorder; and you know it too. We all know it, and the knowledge is unpleasant, and uncomfortable. There are incorrigibly-damaged “functional systems” (to use Luria’s term), devastated microsomes, synapses, whatever. There is incorrigible damage to the fine fabric of the brain—and neither Dopamine, nor Apomorphine, nor any other amine is going to be able to repair this structural damage.
Whatever other considerations have relevance here, there seems to me a stark, inescapable “economic” dilemma. If the “functional” reserves (and not merely the chemical reserves) of the patient are depleted, then supplementing these with l-DOPA (or any dopaminergic agent or adjuvant) must obviously be of limited use. What is surprising, and significant, is that we repeatedly see seemingly-complete restorations-to-normality. But then one’s finances are “restored to normal” by a loan from the bank. One seems to be solvent, one has money to spend, but there is a hidden snag—an “occult” debt. What subsequently happens (and, to my mind, is very inadequately, and misleadingly, dismissed as incidental—as “side-effects”), as far as I can see, is that l-DOPA starts as a “supplement” but turns into—a “stimulant.” When this happens—and I think there is a threshold, a critical point, which may vary very greatly in different patients—I think there is an “overloading” and a stressing of already-damaged and thus somewhat labile functional systems, and that this can only eventuate in their recalcitrance—or breakdown.
I see “ON/OFF effects” as expressions of an intermittent (and typically sudden) system-breakdown—and I regard it as the most ominous of “side-effects” (because the least calculable). I agree with you that gross ON/OFF effects are (mercifully!) rare, but I think that something qualitatively similar (even if very mild, and scarcely symptomatic) is likely to occur in 100% of patients—that is, all patients who show a spectacular initial response to l-DOPA—I think that all those who initially do very well must, ipso facto, “pay the price” later; because this “doing well,” in itself, is physiologically costly, and involves the patient in an ever-mounting physiological debt. I see no pharmacological way out of this “bind.”
What then? What should one do? Should one recommend l-DOPA (or Sinemet, or AMP etc) to Parkinsonian patients “without reservation”? These are the very words you used. I think that one needs to have many reservations—altho’ it is a further dilemma (both therapeutic and ethical) as to how much one should vouchsafe these to patients one is treating.
Let me give you two individual examples. […]
Last weekend I got an anguished, bewildered, and angry phone-call from the son of an old man I had been seeing for a while. The old man (he was 86, but remarkably vigorous and alert for his age) had had Parkinson’s for fifteen years. It was obviously a very slow, “benign” sort of illness, for at 85 he was still able to live alone, to climb stairs, to shop, etc. (and, on social occasions, being a merry old soul, to sing and dance with people a third of his age). Certainly he had—problems, but he knew where he was; he knew his powers and limits, what he could do and couldn’t do. In short, he was managing OK without pharmacological help (at least, only a little Cogentin for rigidity). A year ago he was started on l-DOPA by Dr. X at Einstein. He was told, in the most glowing terms, that this “would make a new man” out of him; that he would feel “just great,” and have “no complications.” The old man and his son had various questions; these were waved aside as time wasting, irrelevant. “I recommend l-DOPA to you without reservation”—these were the very words which Dr. X used! The old man did famously for about six months, and then he started to run into trouble. His present situation, seemingly, is this: that he has become severely hypotonic[*14] with the continued use of l-DOPA […], so much so that he has difficulty maintaining any postures—he is as limp as a rag-doll, or a nerveless “floppy baby”; but if there is the slightest reduction in his l-DOPA dosage, he immediately becomes disablingly (and rather dangerously) rigid. I cannot find any “right dose” any more—he is damnably hypotonic, or damnably rigid: he is damned, apparently, whatever we do. And this is precisely what his son said to me. He said, “You’ve got my old man hooked on l-DOPA. He can’t take it anymore, but he can’t take not taking it—l-DOPA has put him in one hell of a mess.” […] You will say “What’s one case-history? What’s one individual? What does one man matter against all the figures I can show you?” I say it does matter, and matters intensely; suppose that this man was your father—or you.
Now for the other case-history—or allegory. This was a woman in her mid-fifties, with a rather rapidly-progressive form of Parkinson’s. She had managed, with ever- and rapidly-increasing difficulty, to keep house etc. until last summer, and then, in a catastrophic sort of way, everything got “too much” for her, and within a few days she collapsed into a state of cripplingly severe Parkinsonism allied with a reactive (and perhaps also partly “organic”) depression of suicidal and nihilistic intensity. When I saw her first, last October, she was drooling, rigid, unable to stand, unable to talk intelligibly, bedfast, unable to turn over in bed, to feed herself, etc. She also felt (not unnaturally) that she was “finished,” that this was “the end of the line”; and she could hope for nothing but that God would have mercy on her soul.
But “recover” she did—and has—with the use of Sinemet (l-DOPA caused intolerable peripheral effects), and all other sorts of help and support. She had a period of severe “side-effects,” but now, in a mysterious way (which I don’t pretend to understand) she has achieved an Accommodation—a temporary one, at least. Seeing her walk down the street, running for a bus, working again (she is a registered nurse), cheerful and realistic, enjoying life to the full with her family and friends, one would never guess that she has, that she had, cripplingly severe Parkinson’s disease, and that her seeming “normality” is but a brief and merciful interlude in a deadly situation. She knows this, and accepts it with a wonderful equanimity, courage, gratitude—and humour. “I have been granted a reprieve,” she says, “and whatever the future holds, I shall never forget the happiness, the goodness, of this special time. It may be ‘borrowed time,’ but I shall live it to the full. And when Payment is demanded, I shall pay without demur; I was saved by Sinemet from the jaws of Death. I would have been dead by now if you hadn’t given it to me. My only feeling is gratitude—and ‘Thank you, thank you’ to the good doctors who developed the drug, to the good people who have understood and helped me in every way, and to the good Lord who allows such miracles to happen.”
There! There are two case-histories for you. It seems to me clear that the old man should not have been put on l-DOPA; and equally clear that l-DOPA/Sinemet was the right treatment for the woman. Can one generalize? Can one say in advance, or at any point, what constitutes “right action,” and what not? This letter is already absurdly long—and I shall therefore leave all these questions open. The important point is that they are seen as open questions.
You are a bold and brilliant man, and you have provided many answers. But every “answer” you provide opens vistas of new questions—technical, chemical, ethical, existential—and if someone like myself has any use in the world it is this: that I am a Questioner, I question incessantly, I question everyone and everything; and I shall have plenty of questions for the Lord God when (if) I ever meet Him face-to-face!
Let me conclude by
a) enclosing a copy of the new, enlarged edition of Awakenings (it will come out here in a few weeks)
b) Sundry short articles + papers I have written on and around the subject.
c) Thanking you for being a courteous, a gallant, and an honorable adversary—a man with whom I profoundly disagree, but whom I cannot help admiring and liking
d) Hoping that we can meet, and talk at length, and perhaps see some patients together, some time in the future—
With kindest regards,
Oliver Sacks
To Michael Sacks
April 5, 1976
11 Central Parkway, Mt. Vernon, NY
Dear Michael,
I just got a letter from Pop today, in which he mentioned that Butch had died.
I know how much Butch meant to you (and you to him)—you often said you felt he was your “only friend,” and I remember the sense of wonder, rapture almost, with which you would sometimes exclaim “Beautiful Dog!” I think the loss of such a beloved animal, a true friend, can be very hard to bear—or believe—and I feel I must at once write you a letter of sympathy and fellow-feeling.
I don’t know whether you ever read any of J. R. Ackerley’s books—among them he wrote a particularly fine one about his dog Tulip, and later (in My Father and Myself) he was to write of Tulip: “She offered me what I had never found before—single-hearted, incorruptible, uncritical devotion…From the moment she established herself in my heart and my home, my obsessions…entirely fell away…I sang with joy at the thought of seeing her…The fifteen years she lived with me were the happiest of my life.”
Freud, you know, was deeply devoted to, and loved by, a succession of dogs (chows), and wrote very movingly of “their fidelity, their affection, entirely without ambivalence.” He would be heartbroken each time a beloved dog would die—it is so sad that a dog’s life-span is only a fifth of a man’s. Perhaps—although such a thought would scarcely be bearable to you now—you might consider, in the fullness of time, getting yourself another Dog, another “Butch.” (Not that Butch, an individual, whose life was inseparably shared with yours, can ever truly be “replaced.”) Mourn for him, lament—for you need, one needs, the true feeling of Grief (and loss and parting), as one needs the Joys of meeting and finding. He was a lovely animal, indeed, and I think he lived a good and full life—for a dog—and enjoyed it to the full to (for a dog) a ripe old age.
My landlord and landlady, who are really friends now, have just been bereaved of their little dog—a dear creature whom they got as a puppy, fifteen years ago.
There comes to me, as I write, the poignant grief I felt at the death of Greta,[*15] when she was run over in front of the house; and I remember digging her a little grave under the old Magnolias in the garden.
By the way, when, exactly (and how) did Butch die? I had a curious experience a short time back, because I got a sudden sense of his dying or death. By association I connected this with Bounce, [Alexander] Pope’s dog, and his sadness at losing his old companion. I even found myself, “out of the blue,” quoting one of Pope’s last letters and verses (copy enclosed), in which he enquired after, celebrated, and lamented his dear Beast.
I may be back for a few days at Seder; otherwise, most probably, later this month. Look after yourself, and after our old Dad—
Love,
Oliver
To Samuel Sacks
April 6, 1976
11 Central Parkway, Mt. Vernon, NY
Dear Pop,
[…] Magdalen [sic] Gardner-Capp phoned up one Sunday and asked if I’d come to lunch. I said, “No, please forgive me, but I am in a frantic writing mood, and would hate to interrupt it. Another time maybe?” She said, “Please make it today, if you can, because Aubrey is coming, and he particularly wants to see you, he said.” So I went along, and a very fascinating encounter it was. I have had a number of people say to me that I looked, or talked, or “moved” like Aubrey, without their having any idea we were blood-relations. I’d always assumed that such comments, if they had any substance at all, were based on superficial and acquired characteristics e.g. a certain sort of English (Oxbridge) accent, etc. But when I did meet Aubrey—and this was really the first proper meeting between us in our lives (previously he has just been a lofty public presence, and myself a withdrawn, silent figure on the few occasions we have been in the same room), I was startled to find (and he was equally startled!) that we were almost-uncannily similar in many ways. It startled us, and it caused much merriment in the whole company: for our gestures, our manner-of-speaking, our motor idiosyncrasies and turns-of-speech, etc. were almost as alike as those of identical twins! The similarity went deep: we kept finishing each other’s sentences, inadvertently, we tended to make the same, sudden, unexpected associations. I have never had such a strange sense of “a double” in my life, and I said this to him: “Aubrey,” I said, “although I scarcely know you, and our paths have scarcely crossed, and our lives have been utterly different, I have the feeling of an innate similarity between us—I think you are ‘constitutionally’ or genetically closer to me than any of my brothers.” He agreed about this, entirely; and made a very interesting comment. He said, “I always felt, as others did, that I was very similar to my grandfather, Eliahu; and when you walked in the room today,” he continued, “I got a shock, because you seem extremely similar to him in all sorts of ways, although, of course, he died before you were born.” Curious, isn’t it? Atavus means grandfather, and by this curious freak of atavism (because I think one must see our odd genetic similarity as precisely this), I got a very strong sense of being truly a Sacks—in the sense of being my grandfather’s grandson! What do you think of this? It is a curious example of the interactions of Nature and Nurture: Aubrey and I shared the feeling, I think, that each of us might have been the other, had our “upbringings” etc. been reversed! […]
You mention that there has been a mild flu epidemic in England. There has been a most severe, and malignant epidemic here—really a coming-together of several different strains of flu. The worst has caused (I have seen this in two patients) a very nasty sort of encephalitis with severe, and, one suspects, permanent brain-damage. There has been an identification of this virus with the “Swine flu,” or “Spanish flu” virus of 1918–19. As you may have read, there is sufficient alarm over here for [President] Ford and Congress to have rushed through emergency legislation to immunize the whole country. This malignant sort of influenza, and the incidence of encephalitis lethargica–like complications, may give a special and dreadful topicality to the story of Awakenings. […]
This has been a long, gossipy letter—but it is to make up, in part, for my naughtiness in not writing for so long.
Take care of yourself, Pop—there’s nobody like you!
Love,
Oliver
To Eleanor Pyle[*16]
January 15, 1977
11 Central Parkway, Mt. Vernon, NY
Dear Eleanor,
It was very nice to get your good letter—I too am sorry that you hasted (felt you had to haste) back to Boston straightaway, and sorry too that I monologued so much, and didn’t allow you—or Bob—to speak enough! I can only say that after nine months of “shut-up-ness” I had such a sense of liberation in my brief holiday on the West Coast—some of this surely from the delight of companionship with Bob, a Bob who has deepened and grown so much with the years—that I could hardly stop talking! And perhaps you, by your very silence, your deeply listening and feeling silence, somehow drew me out.
Thank you for your emboldening words about standing one’s ground before Editors. What you say, and what Bob said, has greatly helped to release me from a sort of abjection of posture, and to recover a needed sort of erection and erectness. I had a talk with Bob Silvers[*17] just yesterday, and will be giving him a slightly clarified and more forceful, but essentially unchanged, version of my original article on Monday. If he doesn’t like it, he can lump it, and I shall take it elsewhere: it is up to the NY Review (or whoever) to expand for me, not for me to contract to them! […]
