Sensing Light

by Mark A. Jacobson

  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 100th 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-full 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.

  V

  WITH KEVIN AWAY LECTURING and one of their nurse-practitioners out sick, Gwen had a busy Friday morning clinic. Though she wasn’t falling behind, each time she looked at her schedule Gwen felt anxious. It was the name at the bottom, the one she had added on late yesterday, that was disturbing her.

  At his last appointment, Ed Greames was in the terminal phase of AIDS. Millions of slow-growing mycobacteria were reproducing in his lymph nodes, liver, spleen, and gut, metabolizing their way through his body. His symptoms initially improved on antibiotics, but the mycobacteria were becoming resistant to these drugs, gathering their minions for a final assault.

  This week, Greames called complaining of right leg weakness. Gwen sent him to the ER where a brain scan revealed a mass, almost certainly a lymphoma—inoperable, incurable. Before the scan, the best he could anticipate was six months of worsening fevers, diarrhea, and weight loss. In a sense, his death would be caused by starvation. The neurologist who had seen Greames yesterday told Gwen that scenario would be superseded by progressive loss of motor function and speech in weeks with seizures likely along the way. Radiation therapy might prolong the inevitable by a month or two, but the patient would have to undergo a brain biopsy to confirm the diagnosis for any radiation oncologist to treat him. Beyond that, all she could offer was home hospice care from visiting nurses who were savvy in the use of morphine, steroids, creams, and tranquilizers to ease suffering at the end of life.

  Ed Greames could still walk into the exam room. A tall, thin, graceful man with graying, jet black hair, he wobbled in on a cane. A proud man, a successful architect prior to his illness, Greames was angry.

  “The neurologist explained it all to me,” Greames said, interrupting her greeting. “I’m not interested in radiation. I want it to end, as soon as possible.”

  “OK… Can I get a little more information first?”

  Greames answered her questions and let her examine him. Gwen’s laying on of hands diffused some of his bitterness.

  Five minutes later, he repeated his request. He was lucid, realistic, and hopeless.

  It was a snap decision for Gwen. She knew what the risks were, where she would be crossing the line, but she couldn’t refuse to help him. She wrote two prescriptions and gave them to him.

  “The morphine is for pain, the phenobarbital to prevent seizures. Be careful with these medications. They’re dangerous. For example, if you were to take an overdose, say the entire contents of both bottles all at once, you’d fall asleep, stop breathing in a few hours, and die.”
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  Greames’s face softened.

  “That is most instructive, Dr. Howard. You’re very kind.”

  He gazed at the slips of paper.

  “I’ll use these carefully,” he promised.

  “I know you will.”

  “Though actually, I might need a few weeks to take care of things before I leave.”

  “Of course,” said Gwen with relief. “Let me know if there’s anything I can do. There are hospice nurses who do house calls. I can arrange for home attendant help, too.”

  “I don’t think so,” said Greames, his voice flat and distant now. “My young friend can take of everything. Thanks anyway.”

  VI

  AFTER CLINIC, GWEN FOUND a message in her mailbox. Charlie Sawyer from the CDC called. She had met Charlie the previous spring at a meeting in Atlanta and learned he was seeking collaborators to field test an assay he was developing to diagnose HTLV-III infection. As the assistant director of the AIDS program at City Hospital, Gwen had access to hundreds of AIDS and ARC patients getting routine blood draws who would be willing to donate an extra tube for research. She eagerly agreed to help.

  Gwen had another agenda in joining the project. Since her needle-stick, whenever she had a cold or was tired, the fear she might be infected had to be dealt with or suppressed, usually the latter. Checking her lymphocyte count, which she did on each equinox and solstice for good luck, and seeing a robustly normal number made it easier for her to believe she had dodged the bullet, but it wasn’t definitive proof. In June, after listening to Charlie’s caveats about the assay’s accuracy problems, Gwen sent him a sample of her serum. Ten days of tension, punctuated by panic attacks, ensued before she received the result—HTLV-III antibodies not detected.

  Charlie had warned her that the test was still a work in progress. Her result could be a false negative. He promised to check her serum again once the improved accuracy of his next generation assay was verified. She had told Rick the news with restrained optimism. Charlie had also talked her into enlisting health care workers at City Hospital as study subjects. Their samples would be run the moment his new version was validated.

  Gwen dialed the number in Atlanta. Charlie answered and excitedly told her his next generation assay was ready for prime time. He was packing test kits to ship to her as they spoke. The City Hospital staff’s specimens she had stored in a basement freezer could finally be thawed.

  “Charlie,” she asked awkwardly, “can I send you my serum now? I mean it would be weird to run it in our lab.”

  “That’s not necessary.”

  “I don’t understand. You said…”

  “Gwen,” he interrupted, “I saved an aliquot of the serum you sent me in June. I already ran it with the new assay so you wouldn’t have to wait for the results like last time. I can guess how that must feel. Anyway, you’re not infected.”

  Gwen was mute as she absorbed the news.

  “This version of the assay has a less than five percent probability of false negatives, Gwen. And because you were antibody negative before, even though it was using a less accurate test, the probability is actually way, way lower because of the multiplicative... I don’t think you want a statistics lecture right now. Suffice it to say you are not going to get AIDS.”

  Gwen had the presence of mind to thank him, which she kept repeating until he begged off.

  “I’ll get back to you in a month. We want to follow those City Hospital results very, very closely.”

  VII

  WHEN GWEN CAME HOME, she opened the front door and stood in the hallway listening. Eva was supposed to go directly from school to a friend’s house for a sleepover. The only sound was a distant thrum of running water. She crept through the house. The noise came from the bathroom. It had to be Rick in the shower. She imagined sliding her fingers over his wet back. Euphoric, her inner thighs tingling, she sat at the kitchen table waiting for the water to stop.

  Rick was out of the shower with a towel around his waist when Gwen entered naked. She pulled away his towel, and rubbed her hips against him.

  “I’m negative,” she said.

  “Negative?”

  “My antibody result. This time for sure. No more testing required to confirm it.”

  Rick lips parted. Then he froze. Gwen grasped his shoulders and wrapped her legs around him. He began a question. She preempted it with the answer.

  “No more condoms.”

  Rick had been quickly convinced, as much by Gwen’s passion as her logic. Now he lay beside her deliciously spent. They hadn’t come simultaneously in years.

  “Remind you of the early days of our love?” she asked dreamily.

  “Oh, yes,” he laughed.

  She stuck her tongue in his mouth and stroked his flaccid penis.

  “Afraid I need recovery time.”

  “No problem, we’ve got all night.”

  With a contented hum, she tucked her head under his arm.

  She suddenly considered another complication of having sex without protection. Her initial reaction was not to worry. I’m forty years old. My period just ended two days ago. I won’t forget to use a diaphragm next time. Then she realized they had never had The Talk.

  Of course not, she thought. We hadn’t been a couple long enough for it to come up when the needle-stick happened. But now we’ve been together five years. And Rick is thirty-eight. He’s never said anything about wanting children of his own. But under the circumstances, why would he have? Ugh, we have to go there. There won’t be a better time than right now.

  “Hey, honey…you know what we’ve never talked about?”

  “Um…there are lots things we haven’t talked about... What’s on your mind?”

  “I guess I’d like to know… how you feel about having children.”

  “We have a child. I still think of her as a child. So I’m guessing you mean… having a baby?”

  “Yeah.”

  “Is that something you want?”

  “I was sort of trying to find out what you want.”

  “I guess I asked you first. Do you want to have a baby?”

  This was not how she had hoped the conversation would go, but they were in too deep now. She was going to have to show her hand first.

  “I’m…open to the possibility.”

  “That doesn’t sound like you want to have a baby.”

  “Rick, what do you want?”

  “I like our life the way it is. Eva treats me like I’m her father even if she doesn’t call me Dad. Hell, she hardly ever sees Daniel. I feel like she’s my daughter, too. And I get all the interaction with kids I can handle at school.”

  “Really? You’d be OK if we didn’t…?”

  “Absolutely.”

  Gwen returned to her snuggling spot, and Rick’s mind idly wandered. He wondered whether she would keep working so hard. After her residency was over, he had assumed she continued working sixty hour weeks to distract herself from worrying about being infected. Now, he realized that assumption was about to be tested. And what if she didn’t ease up? What would that say about their relationship? He didn’t want to follow this thread. Instead, he thought of a cartoon he had saved from the New Yorker. He hadn’t shown it to her yet. Four men in business suits were seated at a bar. Each had an open briefcase spilling out documents onto the counter. The bartender was shutting one. “No more work for you tonight, buddy!” was the caption. Should he give it to her? What if she didn’t think it was funny?

  VIII

  GWEN AND RICK DROVE to San Francisco on Saturday morning. They parked by Golden Gate Park and strolled into a meadow where Gwen spotted three middle-aged men and a young woman sitting on a blanket. She had a meeting with these activists. He planned to take a leisurely run to the ocean.

  “Is that Hippy Hill?” Rick asked, pointing toward a nearby slope.

  “Maybe, I don’t know.”

  In fact, she did remember smoking pot there during medical school. But Gwen wasn’t in the mood to
wax nostalgic.

  “I don’t have a good feeling about this,” she confided.

  “Really? They seem like just what you need now. Community people putting pressure on the government to develop drugs for AIDS.”

  “I hope you’re right.”

  The man with a beard and shaved scalp Gwen knew well. Holden was one of her clinic patients. He had arranged the meeting. She recognized the others from television interviews after the candlelight march in July when thousands had filled the Civic Center demanding federal action on AIDS. Holden had told her about the woman, Rebecca Wolman. Very thin with closely cropped her, she had a master’s degree in public policy from Berkeley. The leaders of the San Francisco AIDS Action Committee, the largest AIDS activist group west of the Mississippi, had hired her to be their executive director. When Gwen had heard her speak, Rebecca was on fire with a formidable, controlled rage as she described what AIDS was doing to gay men and other marginalized people and what had to be done to stop the epidemic.

  “Dr. Howard,” said Rebecca graciously, “We know how busy you are. We really appreciate your taking the time to meet with us.”

  Slick too, thought Gwen. It was easy to foresee how this ambitious young woman’s public persona would blossom as the epidemic spread. She was going to be quoted by the press, a lot.

  Rick excused himself and jogged off.

  Gwen was curious about SFAAC, and the activists asked about how the AIDS clinic was funded and what research was being conducted at City Hospital and elsewhere in the university. They spent an hour in collegial discussion. Gwen was impressed by how knowledgeable they were.

  Getting down to the real reason they had requested the meeting, Rebecca said SFAAC was intending to take action in a way they believed would increase pressure on the government to put more money into AIDS patient care and research.