Sensing Light

by Mark A. Jacobson

  “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.

  IX

  BACK IN THE EAST Bay by noon, Gwen dropped Rick off at home then drove further up into the hills. She parked in front of a large ranch house and steeled herself to deal with Eva’s unpredictable moods. Waiting in the front hallway, she looked around the spacious living room through bay view windows to a deck and hot tub. Uh-oh, she thought.

  Eva, now taller than her mother, came downstairs and eyed Gwen darkly. She politely thanked her friend’s mother for hosting the sleepover. Inside the car, she started in as Gwen was backing out of the driveway.

  “Why can’t we live in a bigger house? You’re a doctor. Most doctors are rich. Why can’t you get a job that pays more money?”

  “Sorry, Eva, I’m not qualified for any of those mega-buck jobs.”

  Gwen had learned to pick battles with her daughter carefully. Passing on this one was a no-brainer. She was grateful Eva had survived her first year of high school unscathed and willing to cut her some more slack.

  Though the meeting in Golden Gate Park had reined in Gwen’s euphoria, the rest of her weekend was luxuriously uneventful. She prepared slides for a medical school lecture, caught up on overdue clinic progress reports and performance evaluations, and went for a long walk with Rick.

  On Sunday evening, while making dinner, she called out for Eva to set the table. She got no response and went to her daughter’s bedroom. The door was closed. She could hear Eva talking on the phone.

  She was about to knock but stopped short when Eva said desperately, “Are you sure she doesn’t like me?”

  Gwen gave her another pass.

  At dinner, Eva was morose. Her face had no muscle tone. Rick’s attempt to cheer her up made Gwen laugh. Eva gave them an accusatory glance and stomped off to her room.

  After dinner, the phone rang. Gwen snuck up to Eva’s door and heard happy chatter. She returned in an hour and heard giggling.

  “Kiddo,” she said loudly, “Is your homework done?”

  A moment later, Eva bounded out. She grabbed her backpack and sat at the kitchen table, completing work sheets for her Spanish class. At ten o’clock, Gwen checked again and found Eva in front of a mirror, holding two tubes from her collection of lip glosses.

  “Tough decisionsville?” she inquired.

  Eva’s eyes darted between the mirror and each shade of gloss. She didn’t answer.

  Bemused, Gwen climbed into bed where Rick was engrossed in the Sunday newspaper. When I was her age, she thought, friends weren’t that important, were they? No, not for me, not until I met Nan in college.

  She had a vague, unsettling sense of guilt, as though something shameful from her past was approaching consciousness. She grabbed the Sunday magazine section and set to work on the crossword puzzle.

  The alarm went off at six-thirty the next morning. Gwen promptly arose and crossed the hall to mobilize Eva, who needed to be at the school bus stop in forty-five minutes. Eva muttered a protest that wasn’t overtly hostile. A good sign, thought Gwen.

  Coffee, juice, and a bowl of cereal later, Gwen was waiting at the breakfast table, her annoyance growing. She was about to yell an ultimatum when Eva appeared in the kitchen doorway, somnolent but dressed with a coral green backpack slung over her shoulder.

  Gwen dropped her off as the school bus door was closing and headed onto the freeway toward
the Bay Bridge. She mused over how different high school was for Eva than it had been for her. Just the racial and cultural diversity her daughter had to negotiate seemed daunting. She had heard from other parents that neither black nor Asian kids would socialize with whites. There were exclusive cliques too, like the girls who made the soccer team. At age fifteen, Gwen and her classmates were a monochromatic rock-and-roll nation, united against their parents’ authority. It had been a simple generational conflict.

  Remembering high school perturbed her. She turned her mind to the content for a talk she had been invited to give in Chicago.

  X

  KEVIN WAS IN HIS office before seven on Monday morning studying a spreadsheet. He had already mined from this data, gathered from everyone with AIDS or ARC seen at City Hospital since the epidemic began, material for half a dozen publications. Now it dawned on him that the substance for two more papers was here. The first time he looked up at the wall clock, it was eight-fifteen. He cursed. The weekly clinic meeting started at eight. On his way out the door, Kevin realized he didn’t have to go. Gwen had volunteered to take over as clinic medical director. Elated, he returned to his data.

  In 1981, Kevin could easily handle being the sole primary care doctor for all AIDS and ARC patients coming to City Hospital. By mid-1982, there were too many for him to manage alone, even with the help of a nurse-practitioner. He talked Ray Hernandez into hiring Gwen to share the load. Once she was on board supervising the treatment of hospitalized AIDS patients, Kevin only had to juggle keeping his research afloat and running the clinic. He soon deferred to Gwen’s judgment there as well. Kevin discovered she could tell unerringly which patient complaining of a headache just needed reassurance and pain medication and which one had to be admitted for an emergent brain scan, or which one with a fever would be fine to rest at home and drink lots of fluids and which would die if not immediately given industrial strength antibiotics and sent to the ICU.

  Now that a laboratory on the Hill was willing to measure T cells in blood samples, Kevin’s top priority was his Phase 1 trial of suramin. Of all the drugs Rajiv Singh had pulled off the shelf to screen, ancient suramin, used in Africa since the 1920s to treat sleeping sickness, most potently disabled the retrovirus in a test tube. Although the medication had serious side effects, there were no better candidates. Conducting this trial while simultaneously moving his other studies forward absorbed virtually all of Kevin’s attention.

  He didn’t look up from the spreadsheet again for another hour. Then a rustling noise startled him. He saw a small envelope slide underneath his door. Inside, he found a familiar pressed flower, a purple wild iris glued to a beige vellum card. He had seen it before mounted under glass. It was part of a wildflower collection in Gwen’s office. Written in firm cursive were the words “Negative. Definitively.”

  He ran to her office.

  “By Charlie’s new assay?” Kevin asked, trying to keep from shouting.

  Gwen smiled beatifically.

  He slumped onto a chair.

  “That’s…fantastic,” he said, his voice catching.

  “Oh my God, Kevin. I don’t want you to cry.”

  “I’m not going to cry. I’m just…so happy…for you, for all of us.”

  She sat on his lap and hugged him. Kevin ran his fingers through her hair, much finer than his own or Marco’s. Suddenly afraid he might be overstepping the boundaries of their friendship, he stopped. Gwen sighed contentedly. More Catholic guilt, he could imagine Marco saying.

  “What color’s your hair?” he asked.

  “Golden brown—if you pretend the gray streaks aren’t there. That’s the closest match I’ve found. Think I should dye my hair?”

  “No. It looks terrific. It’s better than terrific. It’s you.”

  “What a lovely thing to say, Kevin.” She kissed him on the cheek.

  “So Rick knows, doesn’t he?”

  “No, I’m going to torture him for a few more weeks. Of course he knows. I found out on Friday. We celebrated this weekend.”

  A sly grin crept over Kevin’s face.

  Blushing and laughing, she said, “Let’s go out to dinner soon. We need to catch up.”

  “Absolutely. We need to celebrate, too…with our clothes on.”

  Gwen crumpled a piece of paper and threw it at him.

  XI

  GWEN’S LAST PATIENT OF the afternoon was a heroin addict, a woman with no lymphocytes, no visible body fat, and barely any muscle mass. Skin hung loosely from her skeleton. She was accompanied by a stout, six-foot-six counselor wearing a tie-dyed tee-shirt and flannel pajama bottoms. His long grey hair and bushy beard were each held together at the end by a rubber band.

  Gwen had helped Janet get through a lengthy hospitalization for an opportunistic brain infection, consulting with the house staff and dropping by to encourage her daily. This was Janet’s first visit to the AIDS clinic. She had been feisty and foul-mouthed on the ward. Today she was subdued, her responses monosyllabic. After examining her, Gwen went over her medication list, reinforcing how many of each pill she should be taking and at what time. When asked if she had any questions. Janet shook her head no.

  She’s numb, Gwen thought. She finally gets that she’s going to die soon.

  “Janet, let’s have the lab draw your blood and the front desk make you a follow-up appointment. Then check back here with me before you leave, OK.”

  Gwen hoped she might open up after a break.

  As Janet left, the counselor whispered, “Guess she’s not ready to talk about it yet.”

  “You know her well, Greg?”

  “No. I just met her today, half an hour before we came in here.”

  “She’s still using. Those are fresh needle tracks on her forearms.”

  “That’s no surprise. She’s in denial about her feelings. Heroin’s a good way to keep them at bay. But I’ll be in the waiting room at her next appointment, lying in wait for her.”

  He chuckled at the bad pun.

  “Thank you for doing this,” said Gwen, trying not to stare at the man’s remarkably pale blue eyes.

  “I should be thanking you for giving me this opportunity.”

  Gwen had seen many people with end-stage disease uplifted by Greg’s support. She knew little about his organization, Shanti, other than the name was a Sanskrit word meaning “tranquility.” The group had been counseling terminal cancer patients for years and recently began extending its services to those with AIDS.

  Gwen looked outside her door to be sure there were no more patients to be seen. She glanced at her watch. She could go home now. Instead, she opted to sit down.

  “So tell me,” she asked, “how do you manage doing this day in and day out without becoming despondent?”

  “It’s not that hard. You just have to stay focused on embodying the Shanti core principles. Empowerment. Genuineness. Empathy. Service.”

  “I have to admit I’m suspicious of big ideas solving problems. Though you seem to avoid being sucked into despair. That’s a challenge for me. How do you do it?”

  “The principles really work if I apply them consistently. There’s the rub—consistency. When I listen carefully to a dying person and respond honestly with an open heart, whatever sadness I feel passes through me. And afterwards….”

  Greg placed his hand on his chest, drew it away toward the window, and said, “It’s gone.”

  “Sometimes,” Gwen said, wavering over how much to reveal, “A lot of the time, actually, the sadness stays with me.”

  “Have you thought about what’s sustaining it? I mean in doing this work, sometimes sadness comes from empathizing with what our client feels. And sometimes it comes from guilt we have because our client is dying and we’re not, which is about our feelings not theirs. In Shanti, we try to be mindful our mission is to empower the dying, which can take guilt out of the picture. There’s still empathic sadness, which can hurt a lot, but that doesn’t usually last long once your interaction is over.�
��

  Greg halted for a moment.

  “Maybe we have an unfair advantage. See, we believe our clients can resolve their own death issues with a little help. They don’t need us to be directive. But what you’re doing here is based on all the special knowledge you have. Your patients can’t make choices about their medical care without your advice. I guess you have to be directive.”

  Treading lightly, Greg added, “That must be a burden.”

  Gwen gave a downcast nod.

  Then she brightened and said, “You’re using your empathy.”

  Greg laughed.

  “Thanks for being here for these folks,” she said. “They need your help so much.”

  “No, no. It’s nothing anyone needs to thank me for. It’s not all selfless. I get a lot in return once my clients move beyond their denial and understand life is not about who dies with the most toys.”

  Gwen was alone in her exam room, ruminating over their conversation, when she remembered Janet. She ran to the waiting room. Janet was gone. Angry at the front desk staff for letting Janet leave, furious the clinic had no on-site psychiatric services, Gwen got into the elevator and repeatedly punched the down button. Outside, she jogged around the building twice. Janet had vanished.

  Back in the elevator, she found a more suitable target to punish. Gwen hadn’t allowed herself to think of Frieda last night or this morning. Defenseless now, the memories broke through. She began to cry.

  Gwen met Frieda Lowenstein in her freshman high school home room. The frizzy-haired girl instantly assumed intimacy with her. Frieda was the most audacious girl Gwen had ever encountered. Her excitability was contagious, her Jewishness exotic. Frieda was also big on self-improvement. She told Gwen that on the basis of her looks alone she could be much more popular, if it was of any importance to her. Gwen readily agreed it wasn’t. She had never been so flattered.

  They had sleepovers on weekends at Frieda’s house where there was a color television set, an extensive collection of teen magazines and top-forty vinyl recordings, and a refrigerator stocked with chopped chicken liver and cream cheese to slather on bagels for a snack.