Sensing Light (16 page)

III

K
EVIN 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

H
ERB 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
Captain 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?

Herb was in the living room devising an interrogation plan when his mother came home.

“How was work, mother?” he asked politely.

“Fine. It's too late for you to be up. Go to bed.”

“Is your store near the hospital where I was born?”

“No. Mt. Sinai is at 100
^th
Street. I work in mid-town. Now go to bed.”

“Does the hospital have my birth certificate? If I went there, could I see it?”

“I suppose so. Why do you want to know?”

“Why wasn't I born in China, like you and father?”

“You know why. We came here before you were born.”

“Why you did you leave before I was born?”

“Because of your father's job. President Lin sent him in the United States.”

“Why did he send father then? Why didn't he wait until after I was born?”

“Why are you asking me all these questions at eleven o'clock at night? Go to bed!”

Having failed with his mother, Herb had no option other than getting information from his father. The challenge was finding an opportunity to be alone with him. If his mother were present, she would surely cut Herb off by saying, “Your father works so hard. Let him relax.”

In December, his father returned from Eastern Europe. Herb had his chance when his mother was assigned additional weekend shifts at the department store and his father decided, in an impulse of American do-it-yourself gumption, to stay home and paint the kitchen. Herb volunteered to help. He enjoyed taping the baseboards and window moldings, seeing the walls transformed to immaculate off-white surfaces, and the companionship of his father. He almost forgot his plan for a stealthy inquest. Then they stripped the baseboard tape. There were a few streaks of paint underneath. His father blamed Herb.

As they were cleaning up, Herb asked about China. Buoyed by his practical accomplishment, his father was in a talkative mood. He rambled on about Qing Dynasty culture, the revolutions preceding World War II, and his own ancestry. Of course, none of this provided any useful clues. Herb still felt estranged but lacked the proof he was someone else's child.

Herb rose as he heard his name spoken from the podium and his credentials cited. At the microphone, he reached inside his jacket pocket. He touched his prepared notes and left them there.

“Thank you for the kind introduction,” he extemporized. “I want to speak primarily as a physician who administers blood and plasma to acutely bleeding patients. We don't have time to get consent for such transfusions. Our patients and their families have to trust our judgment, and we have to trust that of our local blood bankers. In San Francisco, that trust is well-placed. Our blood banks are screening out virtually all donated blood that could transmit the AIDS virus. They reject any units that test positive for hepatitis B antibody.

“The epidemiologic data presented today make it clear that the risk of acquiring transfusion-associated AIDS is no longer limited to a half dozen geographic locales. The entire country is at risk. Yes, hepatitis antibody screening will increase the cost of blood products, but the public accepts that health care is expensive. They won't accept getting a fatal disease from a transfusion when there is a proven means to prevent it.”

Herb was dizzy. He opted to quit while ahead. He thanked the audience and walked unsteadily to his seat.

During lunch, the AABB leadership met in private session and voted against the proposal. The AABB director read a brief statement afterwards acknowledging there was anecdotal evidence of the AIDS virus being transmitted by contaminated blood products. However, their consensus was that such events were extremely rare. Implementing a policy of testing all donated blood for hepatitis B antibodies would be prohibitively expensive, on the order of one hundred million dollars per year.

Irate, Herb turned to the San Francisco blood bank director sitting next to him, one of the minority already screening donated blood.

“One hundred million dollars? That's far-fetched. With economy of scale, wouldn't performing four million hepatitis assays a year drive the price way down? These people are bankers. Don't they understand how capitalism works?”

“Look, Herb,” the local director replied, “An HTLV-III antibody test will be approved by the FDA and on the shelves in six months. Then blood banks will get insurance companies or the government to foot the bill, and everyone will adopt screening. That's what this is really about.”

Herb had been able to avoid thinking of Sister Anna during the meeting. Now he stopped trying. In clinic, he didn't need to review her chart to know she was losing weight at an alarming rate. Kevin had told him her T cells were dropping precipitously. Even with normal lungs she wouldn't survive a year.

It had been Sister Anna who urged him to give therapy another go. After eighteen months of weekly sessions with an angular, bald psychologist in his sixties, Herb had just “graduated.” The experience had attuned him to appreciate the half-f portion of his glass and taught him how to loosen the leashes on his less-threatening emotions, like the righteous indignation he had now.

Herb imagined the AABB leaders running for cover when the story of Sister Anna's death hit the news. He could see the headline, “Nun Dies of AIDS, Blood Bank Policies Faulted.” But why wait, he asked himself. I bet she'd love to rattle these peoples' cages. He thought of the impact she could have on the public. Maybe I should persuade her to talk to a reporter.