Sensing Light (25 page)

Gwen heard conspiratorial whispers.

“Quiet!” boomed Rick again.

He scanned the room, a police photographer gathering evidence for future indictments.

“We have a guest today,” he announced. “Dr. Howard is going to tell you about a dangerous new disease and how you can protect yourself from getting it.”

Gwen began by asking if the sixth-graders knew what caused AIDS. Their answers included blood poisoning, cancer, and street drugs. She took a piece of chalk and made a single dot on the blackboard. Next to the dot, she drew a giant, crude microscope with a disembodied eye peering into the lens. That got her a laugh.

“AIDS is caused by a virus so small it can only be seen by using the world's most powerful microscopes.”

She made a circle, slightly bigger than the dot.

“Our bodies have defender cells like this one. They travel around inside us and kill invader bugs that can make us sick.”

She drew an X through the circle.

“The AIDS virus is different from other viruses, like the ones that cause chickenpox or colds, because the AIDS virus can destroy these defender cells.”

She paused for questions. There were none.

“OK, any idea how people might catch this virus?”

Again silence, the typical response Gwen received from middle school children. She suspected some of them did know the answer, though to say so at their age and in front of adults could entail merciless ostracism. She had given these talks at high schools and knew many teens understood how transmission occurred. A few had the self-confidence to speak up about it. Behavioral scientists had told her peer education was the best strategy to prevent AIDS from becoming a world epidemic of unprecedented mortality.

They believed sixth grade was the optimal time to encourage those with the potential to influence their peers' opinions about sex.

Gwen raised two fingers and said, “There are two ways you can catch this virus. One, have unprotected sex with someone who already has the infection. Or two, inject drugs into your body with a needle that's been used by someone who is infected. If you avoid those two activities, the virus can't get inside you. It's simple.”

Stone silence.

“Now, what does ‘unprotected sex' mean?” she asked rhetorically. “It's when a man who is
not
wearing a condom, also called a rubber, puts his penis into a woman's vagina…or into a woman's anus…or into a man's anus.”

“Rubber” elicited smirks, but eyebrows furrowed each time Gwen said “anus.”

“Or when a man puts his penis in another person's mouth, or someone puts their tongue into a woman's vagina.”

“Eeeew!” shrieked the class.

“Why would anyone want to do
that
?” wailed one of the girls.

IV

K
EVIN SNEAKED INTO THE
clinic building through a back entrance on Monday morning. When he was safe inside his office, he phoned his personal assistant, Freddy, who brought in an armload of mail, faxes, and phone messages. Kevin noticed the door had been left open. He stood up in alarm.

“No one's out there,” Freddy reassured him.

“Not yet,” he said, closing the door.

Kevin had been flirting with fame since the summer of 1985 when reporters verified the rumor that Rock Hudson, icon of wholesome American masculinity and friend of President Reagan, was in Paris to get an experimental treatment for AIDS. Before the movie star was outed, the media had viewed AIDS as inconsequential, a fatal illness limited to social deviants. Afterwards, any change in the who, what, or how of the disease made national news, and Kevin had become popular as a source for expert comments.

However, once the AZT trial results made headlines, his celebrity became an affliction. The media wanted interviews in time to meet their deadlines, while the university's public relations people insisted on controlling their access to him. Activists wanted any barrier to AZT availability eliminated immediately. They were under the delusion that Kevin had the power to make this happen. Worse, he was getting twenty or more phone calls a day from desperate patients, parents, siblings, and influential friends begging for the drug, which he had no means of obtaining.

On the other hand, grants and private donations to his program had tripled in the last year, and the money wasn't likely to plateau soon. Kevin was able to recruit additional faculty. He had hired Freddy, a godsend who screened phone calls, took care of scheduling, and generally ran interference for him. Kevin also bought decent office furniture after a visiting congresswoman had
looked at his scarred, institutional desk and chairs as though they were a homeless man's bedroll and shopping cart.

The intercom on his desk buzzed. Kevin punched a button.

“Are you still meeting David at nine?” Freddy responded.

“I am.”

“It's nine fifteen. Shall I send him in?”

“Yes, please. Thank you, Freddy.”

He heard tapping on his door. David Ross, a man in his mid-thirties with a thick black beard, wire-rim glasses, and a halo of tightly curled hair, took a tentative step into his office.

“Come on in. Making progress with the foscarnet protocol?”

Kevin had hired David directly from his fellowship at UCLA with the immunologist who in 1981 had discovered the key defect of AIDS—an absence of helper T cells. As soon as David joined the AIDS program at City Hospital, Kevin assigned him responsibility for treating the clinic's retinitis patients and urged him to develop a research plan for this complication of AIDS, a condition caused by a normally innocuous microbe, cytomegalovirus, which could infect the eyes of people whose immune systems were too weak to restrain it. The disease inevitably led to blindness, if the person survived long enough. There was only one medication that could halt the retinal destruction, and it often caused severe blood toxicity. Kevin wanted David to test a promising experimental drug, foscarnet, which had a very different side effect profile. David promptly found a pharmacologist on the Hill with the equipment to measure concentrations of foscarnet in blood samples. Together, they were designing a protocol to give the medication in escalating doses to retinitis patients.

“I was in Angela's lab,” said David excitedly. “We were talking about the case reports of seizures and cardiac arrests that have occurred in transplant patients treated with foscarnet. It's going to be a major safety issue, right? Based on the drug's molecular structure, it makes total sense it would bind serum calcium, doesn't it? So that could be the mechanism by which it caused a seizure or a cardiac arrest, right?

David wasn't even giving Kevin the time to agree with him.

“So I said, ‘Let's get some plasma. You can draw my blood. We'll spike it with the drug. If I'm right, the calcium will drop, won't it?' I mean, this won't win a Nobel Prize, but nobody's nailed down the toxicity mechanism. And if we know that, we can avoid killing people with the drug. Right? Right?”

David was now bouncing on the balls of his feet. Kevin instinctively shrank back, afraid David might be having a manic break. Then he grasped David's perfect logic. He patted his protégé on the shoulder.

“Good job,” Kevin said. “Go for it.”

David gave a clipped shout “Yes!” and bounded out the door.

V

K
EEPING AN EYE ON
the clock, Kevin typed furiously. It was one week past the deadline for turning in a review of the manuscript spread across his desk. Few things aggravated him more than waiting for a journal's decision on whether they would accept one of his papers. Now he was the cause of delay for another author.

The door opened slightly. He heard Gwen say, “You OK?”

“Yup,” Kevin replied, continuing to type.

“Want to talk?”

“Sure.”

She closed the door behind her.

“What's happening?”

“Marco's the same.”

The tension that often animated Gwen, especially when she had nothing left in reserve, subsided. She crept into a chair and watched his fingers fly over the keyboard like a concert pianist. She couldn't type at half his speed.

“One minute,” he said.

“No problem.”

Maybe this is how he escapes, she thought. It must be nice to be fully absorbed in data—all true or false, no shades of gray, no attachment, no pain or loss.

Kevin turned off the computer screen and began complaining about the AIDS Action Committee.

“Marco won't meet the criteria for AZT. Are we whining? These people are such entitlement babies.”

“Dealing with them must be so hard for you.”

“It's all hard,” he said, glumly.

She got up and stood behind him to massage his neck.

“You OK?” he asked.

“I'm fine,” she said in a soothing murmur.

“Gwen, sit down. There's something I need to tell you.”

Terrified, she obeyed. Gwen had never asked Kevin if he had been tested. No one did that here. Anything other than self-disclosure was tacitly understood to be absolutely forbidden. And if someone were to out a co-worker as HIV-infected, she imagined no one would ever speak to her again.

“I don't want to keep this a secret any more, not between us. I'm positive.”

Gwen didn't move.

“But my T cells are 400, and they've been pretty much stable since I found out.”

Her color turned ashen.

“I should have told you sooner.”

“No, no. I understand…how difficult…When did you find out?”

“Six months ago. Marco made me get tested.”

“Who else knows?”

“Marco and Katherine. That's all I want, for now.”

She nodded vigorously, hoping it would keep the flood of grief from seeping into her eyes.

“I won't tell anyone.”

“I know you won't. It's because I really don't want people feeling sorry for me.”

She nodded sympathetically.

“See what I mean.”

Gwen opened her mouth in horror and clasped her hand over it.

“It's OK. I can take sympathy from you and my sister but no one else.”

“Oh, Kevin,” she wept.

Gwen was appalled she couldn't stop crying. She focused on how deeply he must trust her to confide this.

I can't let him down, she thought. If I'd been infected from the needle-stick, I'd have gone to him instantly, certain he'd understand what I was going through. I owe him the same. No more selfish tears.

“I think you know that with T cells this high I may never get sick.”

She tried to smile.

“And if I do, I'll start AZT. It's not the end of the world, Gwen.”

“I know. I know.”

Kevin sat on her lap and hugged her.

“You gonna be OK?” he asked.

Her lips trembled.

“I can't lose you,” she wailed.

Two more sobs and she regained control.

Kevin hugged her again.

He's lost weight, she realized. She touched his flat belly and was dumbstruck she hadn't noticed it before.

“It feels really good to have people who care this much about me. Wish it didn't have to hurt.”

“Good God, Kevin, the last thing you need to be worry about is my feelings.”

“Be strong for me, OK?”

She nodded.

Arising, he said, “I'm late for a meeting. We'll talk soon.”

She grasped his arm and reluctantly let go.

VI

G
WEN HAD CALMED DOWN
by the time noon conference began. Disappointed in herself, she wanted to try again at being supportive, but she couldn't talk to Kevin here. He was sitting between Herb and David. The three of them, along with all the AIDS program nurses and social workers, were looking expectantly at her.

Miranda Diaz, Gwen remembered. The case to be presented was her patient. She signaled the intern taking care of Ms. Diaz in the ICU to start.

Ms. Diaz had been diagnosed with retinitis in September and responded well to the standard anti-cytomegalovirus treatment, ganciclovir, until a recent exam showed new lesions in both eyes. David increased her drug infusions from once to twice a day. Then she became hoarse and coughed violently whenever attempting to eat or drink. David had seen a case like this at UCLA in which cytomegalovirus destroyed the laryngeal nerve of an AIDS patient, paralyzing his vocal cords. He hospitalized Ms. Diaz, ordered higher doses of ganciclovir, and asked an ear-nose-and-throat consultant to see her. The specialist confirmed her vocal cords were limp and couldn't prevent aspiration of fluids, even oral secretions, into her lungs. She soon became short of breath and febrile, signs of pneumonia. Her blood oxygen plummeted, so she was put on a ventilator. Her prognosis was grim.

Gwen already knew these details. Her mind began wandering. She wouldn't allow herself to think about Kevin. Instead, she watched David's reactions to the intern's presentation. She wondered about his priorities. Was he more concerned about Ms. Diaz or how the discussion would make him look as the hospital's new cytomegalovirus expert?

Gwen had been suspicious of David before she met him. The UCLA medical center where he had trained received far more media attention than City Hospital did as the AIDS epidemic was unfolding. Most of it was
showered on David's mentor, Knowleson. It had been difficult not to be envious of the Hollywood involvement and money he was able to harness while she and Kevin were working so hard with so little at City Hospital. At first, the university ignored them. Apart from space and salaries for two nurses and a clerk, which the city's public health department provided, they had no resources until Kevin's NIH funding soared. After crossing the million-dollars-a year threshold, the university gave them modest administrative support. Donations trickled in from wealthy gays—enough money for them to expand services and hire more staff. Then came more grants, more donations, more university support, which meant they were ripe to be exploited by an ambitious junior investigator who wanted to become famous fast. Gwen had suspected Knowleson's articulate, politically correct speeches were principally aimed at getting his name in print and his face on television. Now, she couldn't help but transfer that mistrust to David.

The intern was concluding. Gwen started to listen again.

“Ms. Diaz's pneumonia and vocal cord function haven't improved despite antibiotics and pushing the ganciclovir dose higher. She's also a bit confused today. Could the CMV infection be spreading to her brain?”

Herb asked, “If this woman is developing cytomegalovirus encephalitis on supra-maximal doses of ganciclovir, what are her chances of surviving? Isn't CMV encephalitis always a terminal event?”

Everyone looked at David.

“She hasn't been on the high dose that long.” David said cautiously.

Herb pressed him.

“What exactly is her prognosis?”

“It's hard to say. There are ten or so case reports of CMV encephalitis in the literature, only one of laryngeal nerve paralysis. They all died within weeks, but none were getting this aggressive ganciclovir treatment.”

David looked at Gwen. She guessed he needed some backing to go out on a limb. She gave him a barely perceptible nod.

“I think it's too soon to throw in the towel,” he declared. “Maybe I could get her foscarnet on a compassionate-use basis…though that would take a few days to arrange… uh, maybe longer.”

“Compassionate-use,” scoffed Herb. “Compassion would be considering that extending her life is prolonging her misery, given her chances of even short-term survival are so remote.”

“Wait a second,” Gwen interjected. “She understood the procedure and consented to being intubated. The ICU attending who explained it to her yesterday is fluent in Spanish. He offered her the option of morphine and a peaceful death. She
chose
the ventilator.”

“Gwen, is this really what she wants?”

Irate, she answered, “Ms. Diaz has been my clinic patient for a year. She knows what her prognosis is, and she's told me several times her biggest priority is to see her children again before she dies.”

Herb turned to Nadine, the social worker, and asked, “What's happening with that?”

“They're waiting for visas. Which could take days, weeks, months to resolve. Who knows?”

While everyone else mulled over that uncertainty, Gwen struggled to comprehend why Herb was questioning her judgment. She had made an irrefutable argument, based on the patient's wishes, something he had to respect. Was he dismissing it?

She thought of their mutual confessions two years ago. At the time, it seemed they were becoming close friends. Did he back off, or was it me? Do I have a problem trusting men at work? David, for instance? He'd be a prime example. But what about Kevin? No, that's different. Another possibility entered her mind. Her clinical judgment had rarely been challenged since her appointment to the City Hospital attending staff. Am I so used to having the last word that I can't tolerate opposition?

Kevin broke the silence.

“I'm hearing it's a very long shot that what we're doing will make a difference. On the other hand, she did opt for aggressive treatment. I think we need to determine how informed her decision is in light of what David just told us. Let's make sure she understands being on a ventilator is probably futile.

“Nadine, you're fluent in Spanish. You talked to her this morning. Is she still capable of understanding this and deciding whether she wants to quit or not?”

“She was a couple of hours ago.”

“Gwen should be there. If the vent is what she wants, we should do whatever we can to keep her alive. And it doesn't have to be fixed in stone. We can revisit the decision daily.”

“All right,” said Herb. “But if she deteriorates to the point where she can't decide, I'm going to ask the Ethics Committee to get involved.”

He asked Gwen, “Are you OK with that?”

“Of course I am! If she worsens on high-dose ganciclovir, then it's obviously hopeless. You won't need to get the Ethics Committee involved. I'll turn off the power switch myself.”

Getting what she wanted didn't mollify Gwen. Herb's attitude reminded her of a sub-specialist at City Hospital who treated her as if he were a prosecutor and she a public defender representing a client charged with impersonating a critically ill patient. In fact, she was doing her job, advocating for someone under her care.

No, no, she reproached herself. Herb isn't like that. I was totally out of line. What is wrong with me?