[The following passage is from Paul Brand’s Pain: The Gift Nobody Wants, 1988. The son of English missionaries working in India, Brand went on to become a surgeon who developed new, innovative techniques for hand surgery. He also revolutionized our understanding of leprosy: the disfigurement and the loss of limbs is caused by the lack of respect for the body that results from the condition of painlessness (which is caused by the disease) and not because the disease causes the flesh to become “non-healing” or to change in any way. The National Leprosarium, one of two leprosy hospitals in the United States, was located on the banks of the Mississippi in Carville, Louisiana. Closed as a leprosy research centre in 1999, it is now a museum.]
When I arrived in Carville in 1966 the most celebrated patient was a man named Stanley Stein. Born in 1899, he was older than the century; although the leprosy scars on his face made it difficult to judge his age. Stanley was a genteel, sophisticated man who had toyed with a career in acting before becoming a pharmacist. At the age of thirty-one he was diagnosed with leprosy and whisked off to Carville, where he spent the rest of his life. He had written a poignant autobiography, Alone No Longer, and had founded The Star, a patient newspaper that drew subscribers from all over the world. It was from Stanley that I heard many of the stories of Carville’s past.
By the time I met him, Stanley had lost all sensory contact with his hands and feet and had recently gone blind. Scars and ulcers covered his hands, face, and feet, bearing mute witness to the unintentional abuse his body had endured because it lacked the sensation of pain. Stanley told me that when his eyes first began to dry out he had sought relief by covering them with wet-pack compresses. He would stand at the sink and let the water run until he thought it had reached the proper temperature. Unfortunately, because he had lost sensation and could not judge the temperature, he sometimes scalded his hands and his face, resulting in scarring and more deformity.
Blindness greatly complicated Stanley’s life, and more and more he simply stayed in his room. He managed to carry on his responsibilities with The Star by having articles read to him and by using a Dictaphone for his own writing. Stanley had a keen mind, and I loved to visit him. Sensitive to my slightest inflection of voice, he was quick to perceive the meaning behind what I said. He questioned me about attitudes toward the disease in different countries and wanted to hear of any new advances in leprosy treatment.
As the disease progressed in Stanley’s own body, however, the bacilli developed a resistance to our best drugs and his doctors had to turn to streptomycin, a powerful antibiotic that has the occasional side effect of causing nerve deafness. Tragically, Stanley Stein began to lose his hearing, his last link with the outside world. He could no longer listen to newscasts and talking books, and conversation with friends became extremely difficult.
Unlike Helen Keller, Stanley could not even use tactile sign language, for leprosy had destroyed his sense of touch. I remember entering Stanley’s room, wanting to make my presence known. He could not see me and was so insensitive to touch that I would have to grab his hand and shake it vigourously for him to feel anything. His face brightened when he realized he had a visitor, and he would reach over to a bedside table and fumble vainly for his hearing aid. I would find it for him and then shout at close range directly into the hearing aid, and for a time we could still communicate. But soon the deafness closed in.
A visit to Stanley during the last months of his life was nearly unbearable. Unable to see, unable to hear, unable to feel, he would wake up disoriented. He would stretch out his hand and not know what he was touching, and speak without knowing whether anyone heard or answered. Once I found him sitting in a chair muttering to himself in a monotone, “I don’t know where I am. Is someone in the room with me? I don’t know who you are, and my thoughts go round and round. I cannot think new thoughts.”
I got a haunting sense of Stanley Stein’s absolute loneliness. “Acute loneliness,” wrote Rollo May, “seems to be the most painful kind of anxiety which a human being can suffer. Patients often tell us that the pain is a physical gnawing in their chests, or feels like the cutting of a razor in their heart region.” For the lack of pain, Stanley Stein suffered even greater pain. His brain, with all its liveliness and wit and erudition, was still intact. But pathways to the brain had dried up as, one by one, the major nerves went dead. Even the sense of smell disappeared when leprosy invaded the lining of Stanley’s nose. Except for taste, all inlets from the outside world were now blocked off, and the ivory box of bone that had been the mind’s armour became its prison.
With all the resources of the U.S. Public Health Service at our command, we could do little but make Stanley Stein’s last days as comfortable as possible. He died in 1967.
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