respect them,
as people.
So when I came to Mount Carmel I did not just encounter âeighty cases of post-encephalitic disease,â but eighty individuals, whose inner lives and total being was (to a considerable extent) known to the staff, known in the vivid, concrete knowing of relationship, not the pallid, abstract knowing of medical knowledge. Coming to this communityâa community of patients, but also of patients and staffâI found myself encountering the patients as individuals, whom I could less and less reduce to statistics or lists of symptoms.
And, of course, this was a unique
time
for the patients, and for all of us. It had been established in the late 1950s that the Parkinsonian brain was lacking in the transmitter dopamine, and that it might therefore be ânormalizedâ if the level of dopamine could be raised. But attempts to do this, by giving L-DOPA (a precursor of dopamine) in milligram quantities, had failed persistentlyâuntil Dr. George Cotzias, with great audacity, gave a group of patients L-DOPA in doses of a thousand times greater than had ever been used. With the publication of Cotziasâs results in February 1967, the outlook for Parkinsonian patients was changed at a stroke: a sudden, unbelievable hope appearedâthat patients hitherto able to look forward only to miserable and increasing disability might be (if not cured) transformed by the new drug. Life opened out once again, in imagination, for all our patients. For the first time in forty years they could believe in a future. The atmosphere from this time on was electric with excitement. One of the patients, Leonard L., when he heard of L-DOPA, rapped on his letterboard with mixed enthusiasm and irony, âDopamine is Resurrectamine. Cotzias is the Chemical Messiah.â
Yet it was not L-DOPA, or what it offered, which was so exciting for me when I first came as a young doctor, a year out of residency, to Mount Carmel. What excited me then was the spectacle of a disease that was never the same in two patients, a disease that could take any possible formâone rightly called a âphantasmagoriaâ by those who first studied it. (âThere is nothing in the literature of medicine,â wrote McKenzie in 1927, âto compare with the phantasmagoria of disorder manifested in the course of this strange malady.â) At this level of the fantastic, the phantasmagoric, the encephalitis was enthralling. Much more fundamentally, it was, by virtue of the enormous range of disturbances occurring at every level of the nervous system, a disorder that could show, far better than any other, how the nervous system was organized, how brain and behavior, at their more primitive levels, worked. The biologist, the naturalist, in me was enthralled by all thisâand led me to start gathering data at this time for a book on primitive, subcortical behaviors and controls.
But then, over and above the disorder, and its direct effects, were all the responses of the patients to their sicknessâso what confronted one, what one studied, was not just disease or physiology, but
people,
struggling to adapt and survive. This too was clearly realized by the early observers, above all Ivy McKenzie: âThe physician is concerned (unlike the naturalist) . . . with a single organism, the human subject, striving to preserve its identity in adverse circumstances.â In perceiving this, I became something more than a naturalist (without, however, ceasing to be one). There evolved a new concern, a new bond: that of commitment to the patients, the individuals under my care. Through them I would explore what it was like to be human, to
stay
human, in the face of unimaginable adversities and threats. Thus, while continually monitoring their organic natureâtheir complex, ever-changing pathophysiologies and biologiesâmy central study and concern became
identity
âtheir struggle to maintain identityâto observe
Morten Storm, Paul Cruickshank, Tim Lister