Sensing Light

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by Mark A. Jacobson


  A Plague, 1984

  I

  KEVIN WAS DRIVING TO City Hospital, headed in the opposite direction from the downtown hotel where he was supposed to be lecturing in two hours at the department’s annual conference on new developments in internal medicine. Ray Hernandez had told him four hundred physicians were registered to attend. He had never spoken to so large an audience of doctors and had been worrying about it all week, until paged last night by an intern. His clinic patient, Tommy Paulson, had been admitted. Now Kevin’s anxiety was about him.

  This was Tommy’s third hospitalization for dehydration in a month. The cause was a gut parasite resistant to all available drugs. Maximum doses of constipating medications couldn’t prevent him from having ten to twenty watery stools a day. After his last admission, Kevin arranged for a home care company to give him continuous intravenous fluid infusions in his apartment. Despite such aggressive treatment, Tommy was severely dehydrated again. Kevin had to prepare him for the end.

  As soon as Kevin entered the room, Tommy saw the resignation on his face. Before he could say hello, Tommy began wailing.

  He sat on the bed and held Tommy’s hand.

  “I am so, so sorry…”

  Kevin considered praising Tommy for how courageously he had struggled, what an inspiration he had been to everyone in the AIDS program, but these expressions of heartfelt empathy and battle metaphors were becoming trite. In any case, he had learned that his initial take on Tommy’s capacity for insight was an underestimation. No cliché would ring true for him. Kevin needed a new approach to end-of-life conversations—a more creative, more authentic one.

  To keep doing this work, Kevin was realizing, he had to be sure he was providing comfort, which at a minimum meant giving his dying patients the respect of a spontaneous reaction.

  An idea came. Kevin lay down on the bed.

  “Hey, Tommy. Tommy,” he sang softly like a lullaby.

  This seemed to calm Tommy.

  “Let’s try something,” Kevin suggested. “It’s a thought experiment.”

  “A what?”

  “You’ll see. Tell me about your favorite childhood memory, one that makes you feel really, really good.”

  Tommy concentrated.

  “OK. Playing tag on the bank of the Susquehanna River.”

  “Why’s it your favorite?”

  “The warm sunlight. Cool, thick grass you could almost bounce on. After tag, I jumped in the water. I was completely free then. Now I can’t even get out of bed on my own.”

  “Perfect! Now, can you to imagine that place in the year 1900?”

  “I guess so. It probably wasn’t much different than when I was kid.”

  “Can you imagine yourself there in 1900?”

  “Me? At the Susquehanna?”

  “Yes, in 1900, not 1950, a lifetime before you were born, even before your parents were born.”

  “I’ll try…”

  “Tell me what you’re doing.”

  Tommy’s limbs relaxed as he thought.

  “Floating on the river, being carried downstream by the current.”

  “Are you afraid?”

  “No, the water’s buoying me up.”

  Kevin patted his knee.

  “That’s where you’re going, my friend. You’re going to be part of that river again.”

  “Huh… Hey, that’s a nice trick, Doc. It’s less scary thinking about it your way. Guess I’ve already been dead, haven’t I.”

  “Exactly! Can you be OK with that?”

  “It’s gotta be better than this.”

  Kevin kissed Tommy on the forehead and said goodbye.

  II

  KEVIN’S BELLY STARTED TO cramp as he watched Ray Hernandez stride toward the podium. Scanning the hotel ballroom, he couldn’t see an empty seat. There had to be at least five hundred people here. He became aware of another unpleasant sensation. Sweat was running down his flanks.

  Kevin had spoken to audiences of two hundred doctors. Ray had told him speaking to two thousand wouldn’t be any more intimidating. From the podium, he explained, you can make out at most two hundred faces. The rest are a blur in the background. Kevin was not reassured.

  “It’s my great honor to welcome you,” said Ray, beaming with charm.

  Kevin focused on his boss’s amplified voice, confident and mellifluous. He hoped he could mimic it. Although he had been wary when the new chief of medicine took over at City Hospital, unsure of what it would mean for his fledgling career, it was hard not to like Ray. Especially once it was apparent that Ray wanted to see him succeed as much as Herb did. This kind of regard from an older man had been outside his experience before coming to San Francisco. Even Kevin’s own father had shown little interest in what he might make of himself.

  “Our opening lecture will be given by one of the world’s experts on a new disease that has captured the medical community’s attention, Acquired Immune Deficiency Syndrome—AIDS for short. Many of you know the syndrome by its former name, GRID, which was changed when it became obvious the disease is not exclusively ‘gay-related.’”

  Kevin’s heart was racing. He tried thinking of someplace tranquil. Ray’s home came to mind.

  “Our speaker, Kevin Bartholomew, leads the AIDS program at City Hospital, a new division of our department of medicine which I established because the number of patients with this condition is growing so rapidly in San Francisco. But take note. AIDS won’t be limited to a few ‘liberal’ US cities. It will become an important disease globally—as you’ll hear when Kevin shows you data emerging from other parts of the world.”

  In a last ditch attempt to control his anxiety, Kevin visualized Ray’s collection of yarn paintings, the tremulous combinations of bright colors, plush zigzag, and round shapes—the sun, a man aiming a bow and arrow, peyote cactus. But it was time to walk to the podium now.

  It’ll be over soon, he thought grimly.

  “We’re also proud of Kevin’s creative productivity. This year alone, he’s published papers in the Annals, the Journal of Infectious Diseases, and…”

  Ray savored the moment, keeping the best for last, a feather in his cap for having supported Kevin from the beginning.

  “The New England Journal of Medicine,” he boomed.

  Stuttering, Kevin thanked Ray. He stared at a Post-It sticking to his palm. Scribbled on it was the first sentence of his talk. The words made sense, but he didn’t know what to say next. He pressed a button that advanced a slide carousel at the back of the room. A sketch appeared on the screen depicting the structure of a novel retrovirus named HTLV-III. Laboratories in Paris, San Francisco, and NIH had just simultaneously discovered it in lymph nodes removed from patients with AIDS. Those with the syndrome of milder signs and symptoms that often preceded AIDS—AIDS-related complex, or ARC—also had HTLV-III in their lymph nodes.

  Speaking to the screen, the words flowed. Kevin guided the audience through a series of figures that demonstrated how the retrovirus reproduced itself. Logically, effortlessly now, he described HTLV-III tricking human helper T lymphocytes into swallowing it and, once inside, hijacking the cells into making new viral particles.

  His listeners were intrigued and a bit frightened by this devious pathogen that targeted the cell most responsible for coordinating human immune defenses against invading microbes. Kevin could have been telling a ghost story at a campfire as he explained the current hypothesis for the source of the epidemic. There was a reservoir of HTLV-III in a remote central African forest from which the retrovirus had crossed from chimpanzees to humans, who then transported and transmitted it around the world.

  The room hushed when he said patients with AIDS were the tip of the iceberg. A larger population of people with ARC and a far, far larger population of asymptomatic HTLV-III- infected individuals might all eventually progress to AIDS. Worse, this was a global epidemic. The number of new AIDS cases in the Americas, Europe, and Australia was doubling every six months. His bleakest slide es
timated that a quarter of a million people in the United States alone were already carrying the virus.

  He ended with three “good news” slides. First, the risk of viral transmission to health care workers exposed to AIDS patients’ blood appeared to be very, very low. Only one proven case had been documented, a nurse in England who had no risk factors other than an accidental needle-stick. Second, a diagnostic antibody test was being developed. As soon as it was proved to identify retrovirus carriers accurately, any infected blood donors could be screened out, eliminating transmission of the retrovirus by transfusions. The antibody test could also be used as a public health tool to prevent further sexual transmission. Third, and most important, understanding the structure of HTLV-III had given bench scientists targets for designing drugs to treat the infection and halt the immune system damage it caused.

  Kevin finished by thanking Ray for the invitation to speak. He glanced at the red digital timer below the podium. It read twenty-nine minutes. He pressed the reset button, gratified his lecture was done before the timer reached thirty and a light would begin to flash. He heard a crackling din like surf. He looked up from the timer to see everyone in the hall clapping.

  III

  KEVIN STAYED FOR THE rest of the conference. During the breaks, he received many compliments on his talk. Returning to an empty apartment didn’t sour his mood. He opened a beer and put his feet up on the kitchen table. His only regret was Marco’s absence. Earlier that week, Marco’s mother had been in a car crash. It still wasn’t clear she would survive. When Kevin came home, there was a telegram from Mexico City on the doorstep. Marco said her prognosis was better but not good enough for him to be flying back any time soon.

  Pacing through the two-bedroom apartment, Kevin wished he could share his elation. Gwen would be the perfect person—someone he was sure wouldn’t be threatened by his success. But it was Friday night. She would be with her family. She had a life outside work.

  In the living room, he studied a framed print, enlarged from a photo Marco had taken of Pico de Orizaba, the highest mountain in Mexico. Marco had climbed to the summit on his eighteenth birthday. Suddenly exhausted, Kevin sprawled on the couch.

  I should be humble, he thought, not jubilant. Herb and Ray made this possible. I happened to be in the right place at the right time, and they gave me the chance to do something worthwhile—incredibly worthwhile.

  Looking at the photograph, he wondered if Marco really would share his joy. Kevin was already traveling a lot to attend scientific meetings and confer with pharmaceutical companies interested in drug development. Now he’d probably be invited to give talks in other cities, maybe other countries. He’d be getting more requests for interviews from reporters. The demands on his time would increase. Exponentially increase, he realized. How would he handle that? Would he become arrogant? He had seen it occur in others on the academic medicine fast track. And even if he was a paragon of humility, would Marco be threatened by his rising star? Marco had seemed distant recently. What if their relationship couldn’t survive such a major change in status?

  Kevin got up and rummaged through the bathroom cabinet for Marco’s bottle of Halcion, prescribed months ago while he was churning out his first NIH grant application and suffered from insomnia. Kevin washed a tablet down with another beer.

  IV

  HERB WAS ALSO AT a conference, in Washington DC. His day began with a jog through Rock Creek Park. The trail he followed was overgrown. Bottomland weeds going to seed and tree branches thick with deciduous leaves pressed in on him. Though he had started out at sunrise, it was already unseasonably warm and humid for September.

  “What a jungle,” he complained, swatting bugs away from his face.

  Herb was not enjoying this run. The heat was debilitating. Odd, he thought, it didn’t bother me fifteen years ago. Do I sweat less now? He did not want to entertain the fact that he had just been jogging nine-minute miles, not the seven-minute miles he once ran here. Half an hour later, Herb was back in his hotel room, showering. Afterwards, shaving in front of a mirror, he saw new gray hairs and was more discouraged.

  The meeting had been organized by the American Association of Blood Banks in response to pressure from the CDC, several congressmen, and a patient advocacy group. They were all urging the AABB to implement a national policy of screening volunteer blood donors for antibodies to hepatitis B virus. A blood test that could accurately identify and exclude potential donors infected with HTLV-III was being developed but was not yet available. However, studies showed that most individuals infected with HTLV-III had previously been infected with hepatitis B and had antibodies to the latter virus that could be detected in serum. Screening donors for hepatitis B antibodies and excluding those who tested positive could go a long ways toward preventing HTLV-III transmission by transfusion.

  Herb had been invited at the CDC’s request. As an AIDS expert, the director of an ICU where hundreds of transfusions were administered annually, and co-author of an article on transfusion-related AIDS, he was a bargain for the CDC—a triple-threat consultant for the price of one federally discounted coach airline ticket.

  Though he was wearing a wool sports coat, Herb shivered in the hotel conference room. The flickering fluorescent lights, loud humming of air conditioners, and lack of windows were disorienting. To clear his mind, he speculated about the other attendees. It wasn’t difficult to deduce who was from the AABB. The CDC folks wore rumpled clothes, had glasses instead of contact lenses, and carried worn leather satchels stuffed with documents. The reporters looked skeptical. The advocacy people were fuming. That left a scattering of pasty, clean-shaven, white men in suits, sweating despite the cold air.

  The conference opened with a frontal attack by the CDC—an announcement that their field investigations had verified eighty AIDS cases caused by contaminated transfusions. They projected a graph of solid black bars representing new transfusion-associated AIDS cases, which had quadrupled in the last two years. On the right hand side were gray bars representing estimates for future years that towered over the black bars.

  In addition to the unlucky cancer patients, individuals undergoing surgery, and trauma victims who had received infected blood, there was a group which had been much harder hit—hemophiliacs dependent upon frequent transfusions of concentrated clotting factors. Without these Factor VIII transfusions, the slightest injury caused painful, crippling bleeding inside their joints. Factor VIII could only be obtained by pooling donated plasma, thus multiplying these patients’ risk of becoming infected with the AIDS virus. The CDC said fifty hemophiliacs now met criteria for an AIDS diagnosis. They showed another ominous graph summarizing results from hemophiliacs who had no symptoms or signs of the syndrome. Ninety percent of them had tested positive for HTLV-III.

  Three men in the back row stood up and waved canes.

  “Murderers! Murderers!” they yelled. “You know you can make Factor VIII safe!”

  As uniformed security guards shoved the hobbling demonstrators out of the room, photo bulbs flashed. Echoing chants of “Make Eight Safe! Make Eight Safe!” receded down the hallway.

  The next presentation was by a petite pediatrician from New York who had taken care of four infants with transfusion-associated AIDS. While she spoke, photos of the babies were projected on the screen. Some were jaundiced. Some had ulcerated lips. All were profoundly gaunt. Herb was getting queasy. It was a familiar visceral reaction. He had experienced it as a boy on discovering a photograph of starving babies in his parents’ bedroom. He feared he might vomit. Yet thinking about that photo actually calmed his stomach. He dwelled on the memory, wondering if this was one of those “Aha” moments his therapist had hoped he would have.

  The year Herb was in fifth grade, his mother worked evenings in a Manhattan department store. His father was interceding in a Balkan crisis that fall, so Herb came home to an empty house after school. He made his own dinner and amused himself until bedtime by listening to the Cisco Kid and Captai
n Midnight on the radio, reading biographies of famous Americans, or thumbing through his collection of Superman comic books. When bored with these activities, he would daydream.

  He saw parallels between his own life and Superman’s childhood. Herb had a special power of sorts, running fast. If he didn’t come from another planet, his father and mother might as well have. Were the parents he lived with, like Clark Kent’s, people who had adopted him? Depending on his mood, Herb imagined his true father and mother were royalty, sports stars, or famous scientists like the Curies. In his fantasies, he fit into the larger world seamlessly. He would meet his real parents and cease to look Chinese.

  As he embellished stories of his fantasy father and mother, Herb became more and more certain that the pseudo-parents he lived with were hiding crucial information from him. One evening, he sneaked into their bedroom to search for evidence of his secret past. He wasn’t breaking any explicit rules, but Herb knew he was behaving badly. He felt guilty yet compelled to go through each of their shelves and drawers systematically. There were no surprises—other than musty smelling undergarments he wished he hadn’t found—until he uncovered a flat wooden box lying beneath his mother’s sweaters. Inside were envelopes containing flimsy sheets of translucent paper, letters written in Chinese characters. Below these were photographs of Chinese men in suits and ties and women in high-collared dresses posing in front of a modest white, clapboard house.

  The photograph at the bottom was of Chinese adults in white uniforms standing at attention between two rows of cribs. In each crib lay a skeletally thin infant. The baby closest to the photographer was looking straight at the camera. His eyes were set so deep in their sockets Herb couldn’t tell whether he was Chinese or not. Along the bottom, someone had written in English cursive “Nanking, 1938.”

  Nauseated, Herb put the photographs back into the box. He couldn’t read Chinese, so the letters were useless. There was no solution to the mystery of his origins here, but there was the incriminating fact that he had been born in 1938, which raised the possibility he might have been one of those starving babies. Had his parents lied to him about being born in New York? And if he had been a baby in that photo, why had he been spared?

 

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