Sensing Light (17 page)

V

W
ITH
K
EVIN 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 The neurologist who had seen Greames yesterday told Gwen that scenario would be superseded by progressive loss of motor function and speech in weeks with seizures likely along the way.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.”

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

A
FTER CLINIC
, G
WEN 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

W
HEN
G
WEN 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

G
WEN AND
R
ICK 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.

“It'll be a symbolic protest with the dramatic power to grab the media's attention and generate public outrage. We'll make the average American viscerally aware of the wave of death this disease has caused.”

Gwen wasn't sure what “viscerally aware” meant, but it made her uneasy. She also realized Rebecca had done her homework. Gwen's history of civil rights activism must be the reason SFAAC wanted to meet with her instead of Kevin.

SFAAC's strategy, Rebecca explained, was to have fifty activists, incognito in business attire, mingling among the convergence of shoppers and office workers in downtown San Francisco's Union Square on the Friday after Thanksgiving. At precisely four thirty, each activist would open a shopping bag, remove a plastic squirt bottle containing fresh cow's blood, spray passers-by, and scream “AIDS means death! You're next!” Each bag would hold six bottles of blood. Rebecca estimated they should be able to “contaminate” one thousand “victims”—one-sixth the cumulative number of AIDS cases recently reported by the CDC. Because the Saturday after Thanksgiving was typically a slow news day, they expected to get national television and front-page newspaper coverage.

Gwen was appalled. She was certain such a “direct action” would do far more harm than good in swaying public opinion. As she formulated a diplomatic way to say this, Rick jogged up to them.

Rebecca, interpreting Gwen's silence as tacit approval, said, “All of us in SFAAC think the action will be much more powerful if you and Kevin are involved. We'd like you to be arrested with us and make a statement to the press afterwards.”

Rick coughed to mask his gasp. He walked away, head bent down so they wouldn't see it shake in disbelief.

“Rebecca,” said Gwen, maintaining her composure, “Kevin and I would lose all our credibility if we publicly supported this action, let alone if we participated and were arrested.”

“What? You'd be heroes to people with AIDS!”

“I'm talking about our credibility with the City Public Health Department and NIH. They're the source of all our funding, and they're already skeptical about Kevin and me. They wonder if we're just using the money they're giving us to create our own little fiefdom. They're seeing more and more people dying while the problem and the costs keep getting bigger.”

“We're wondering the same thing,” Rebecca lashed back. “We see Drs. Bartholomew's and Howard's names in the newspaper. We hear about the grants you're getting. It's obvious AIDS is benefiting your careers. Here's your chance to prove which side you're on.”

Gwen was close to losing her temper. For a second, she saw Eva standing before her instead of Rebecca—an edifying vision. She was not going to allow herself to be provoked. Gwen walled off her emotions and thought through what to say next.

Lifting her hands, she said, “Let's cool down. I appreciate that you folks have a very important role in raising public awareness and empathy for people with AIDS. I respect your courage and imagination. I just don't agree with your tactics. I'm afraid your demonstration will play poorly in the press, and I'm concerned the media will spin this in a way that could make the general public more repelled by people with AIDS than sympathetic to their plight.

“Please understand, Kevin and my jobs are to do the best we can
medically
for our patients. That requires a lot of money. The only funding we have is from government agencies. Believe me, we've talked to a number of nonprofit foundations. They aren't interested in helping.”

Rebecca sneered.

“Please, Rebecca, Holden, all of you. Think about what we're doing at City Hospital. There's no other place with a clinic like ours, dedicated solely to this disease, or an inpatient unit like the one we just opened. Of course, the country needs a huge, federally-sponsored research effort to develop a cure for AIDS. It's your job to build that kind of political commitment. If Kevin and I advocate stridently for more government dollars, we'll look self-serving.”

Rebecca gave the men a cynical half-smile then turned to her.

“They have you exactly where they want you, quietly providing custodial care for a bunch of dying outcasts. The Reagan administration won't do anything of substance to stop this epidemic or to find a cure, unless we raise the stakes and force them.”

Dumbfounded, Gwen stared at Rebecca who said to the men, “Shall we?”

As the group departed, Holden gave Gwen a sad, short wave goodbye.

Rick was at her side again and slipped his arm around her waist.

“I thought all those sixties hippies that were into political theater had retired by now,” he said.

She didn't laugh.