[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.]
Somehow I got off at the right stop and staggered to the hostel. I dully realized I should call a doctor, but my inexpensive room had no telephone. By now burning with fever, I collapsed on the bed, where I lay through the night and into the next day. Every few hours I would awake, stare at the strange surroundings, make an effort to get up, then sink back onto the bed. Late in the day I rang for the bellman and gave him some money to buy orange juice, milk, and aspirin.
For six days I did not leave that room. The faithful bellman checked on me daily and replenished my supplies, but I saw no other human being. I drifted in and out of sleep and consciousness. In my dreams I rode on the back of a water buffalo in India and walked on stilts in London. Sometimes I dreamed of my wife and children; other times I doubted whether I even had a family. I lacked the presence of mind, and even the physical ability, to go downstairs and phone for help or cancel my appointments. All day long I lay in a room which, its window shades drawn tight, was dark as a tomb.
On the sixth day my door opened and in the blinding light of the doorway I could barely make out a familiar figure: Dr. Eugene Kellersberger of the American Leprosy Mission. He was smiling, and had each arm wrapped around a paper bag full of groceries. At that moment Dr. Kellersberger seemed to me an angel sent from heaven. “How did you find me?” I asked weakly.
Dr. Kellersberger said that I had looked ill the afternoon I spoke at the mission. A few days later he called a surgeon he knew I would be meeting and learned I had missed the appointment. Concerned, he pulled out the Manhattan Yellow Pages and called every hotel listed until he found one that recognized his description. “Brand, yes, we have a Brand here,” the hotel operator had told him. “An odd fellow. Stays in his room all day and lives on orange juice, milk, and aspirin.”
After determining that I was suffering from nothing more than a bad bout of influenza, Kellersberger forced additional nourishment down me and looked after me during my final few days in the United States. Though still weak and unsteady, I decided to keep my scheduled sailing on the Ile de France.
Although I rested on the voyage, when we docked at Southampton seven days later I found I could barely cope with the luggage. I broke out in sweat at the slightest exertion. I paid a porter, boarded the train to London, and hunkered down against the window in a cramped compartment. Nothing on the other side of the glass interested me in the slightest. I just wanted an end to this interminable trip. I arrived at my aunt’s house physically and emotionally drained.
Thus began the darkest night of my entire life. I pulled off my shoes to prepare for bed, and as I did so a terrible awareness hit me with the force of a wrecking ball. I had no feeling in half my foot. I sank into a chair, my mind whirling. Perhaps it was an illusion. I closed my eyes and pressed against my heel with the tip of a ballpoint pen. Nothing. No sensation of touch whatsoever in the area around the heel.
A dread fear worse than any nausea seized my stomach. Had it finally happened? Every leprosy worker recognizes insensitivity to pain as one of the disease’s first symptoms. Had I just made the wretched leap from leprosy doctor to leprosy patient? I stood up stiffly, and shifted weight back and forth on my unfeeling foot. Then I rummaged in my suitcase for a sewing needle and sat down again. I pricked a small patch of skin below my ankle. No pain. I jabbed the needle deeper, probing for a reflex, but there was none. A dark speck of blood oozed out of the hole I had just made. I put my face between my hands and shuddered, longing for pain that would not come.
I suppose I had always feared that moment. In the early days of working with leprosy patients, every time I took a bath I made a visual check for skin patches. Most leprosy workers did, I knew, despite heavy odds against contagion.
A rap on the door broke my reverie and I jumped. “Are you all right in there, Paul?” my aunt asked. “Would you like some hot tea?”
Instinctively I found myself responding just like my early-diagnosis leprosy patients: I covered up. “Oh, I’m fine,” I said, in a calculatedly cheerful voice. “I just need rest. It’s been a long journey.” But rest did not come that night. I lay on the bed fully clothed except for shoes and socks, perspiring and breathing heavily.
From that night on, my world would change. I had crusaded to combat prejudice against leprosy patients. I had scoffed at the possibility of contagion, assuring my staff they were in little danger. Now the story of my infection would spread through the ranks of leprosy workers. What would this do to our work?
What would this do to my life? I had gone to India in the belief that I would serve God by helping to relieve suffering. Should I now stay in England and go underground, so as not to create a stir? I would need to separate myself from my family, of course, since children were unusually susceptible to infection. How glibly I had coaxed patients to defy the stigma and forge a new life for themselves. Welcome to the society of the accursed.
I knew all too well what to expect. My office files were filled with diagrams charting the body’s gradual march toward numbness. Ordinary pleasures in life would slip away. Petting a dog, running a hand across fine silk, holding a child—soon all sensations would feel alike: dead.
The rational part of my mind kept cutting in to calm the fears, reminding me that sulfone drugs would likely arrest the disease. But already I had lost the nerve supplying portions of my foot. Perhaps the nerves to my hands would go next. Hands were my stock in trade. I could not possibly use a scalpel if I suffered any loss of the refined sensations from fingertips. My career as a surgeon would soon end. Already I was accepting leprosy as a fact of life, my life.
At last dawn came and I arose, unrested and full of despair. I stared in a mirror at my unshaven face, checking my nose and earlobes for signs of the disease. During the night the clinician in me had taken over. I mustn’t panic. Since I knew more about the disease than the average doctor in London, it was up to me to determine a course of treatment. First, I must map out the affected area of insensitivity to get some sense of how far the disease had progressed. I sat down, took a deep breath, jabbed the point of the sewing needle into my heel—and yelped.
Never have I felt a sensation as delicious as that live, electric jolt of pain. I laughed aloud at my foolishness. Of course! It all made perfect sense now. As I sat hunched on the train, my body too weak for the usual restless motion that redistributes weight and pressure, I had cut off the blood supply to the main branch of the sciatic nerve in my leg, causing a temporary numbness. Temporary! Overnight the nerve had renewed itself and was now faithfully spitting out messages of pain and touch and cold and heat. There was no leprosy, only a weary traveler made neurotic by illness and fatigue.
That single sleepless night became for me a defining moment. I had caught only a fleeting glimpse of life without touch and pain, yet that glimpse was enough to make me feel frightened and alone. My numbed foot seemed like a foreign appendage grafted onto my body. When I had put weight on it, my foot felt exactly as if I had not put weight on it. I will never forget the desolation of that sensation like death.
The opposite happened the next morning when I learned with a start that my foot had come back to life. I had crossed a chasm back to normal life. I breathed a prayer, Thank God for pain! that I have repeated in some form hundreds of times since. To some people that prayer may seem odd, even oxymoronic or masochistic. It came to me in a reflexive rush of gratitude. For the first time I understood how leprosy victims could look with envy upon those of us who feel pain.
I returned to India with renewed commitment to fight leprosy, and to help my patients compensate for what they had lost. I became, in effect, a career lobbyist for pain.
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