Sensing Light (18 page)

Read Sensing Light Online

Authors: Mark A. Jacobson

IX

B
ACK IN THE
E
AST
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

K
EVIN 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

G
WEN'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.

They discussed the merits of various brassieres and sanitary pads and lamented the injustice that boys didn't have to put up with any of this. They shared what little knowledge they had about sex. Photos of Vic Damone, James Dean, and Rock Hudson adorning Frieda's bedroom wall made Gwen dimly aware of yearnings for mysterious sensations and release. However, she mistrusted boys, as did Frieda, who only had sisters. In any case, romance was still a hypothetical issue. No boys had demonstrated interest in either of them, so far.

Frieda stopped growing in ninth grade but didn't stop gaining weight. On entering tenth grade, her breasts were large enough to be a source of embarrassment. She knew she bore a passing resemblance to the young Elizabeth Taylor in
National Velvet
and tried to draw attention to her face instead with lipstick and make-up. Meanwhile, Gwen had grown three inches over the summer. Her breasts and hips were modestly proportioned. Her nose had turned cute. She let her straight blond hair grow long and tied it in a ponytail.

Pheromones permeated their classrooms now. The boys were markedly taller and had deeper voices. Gwen was approached by previously taciturn Rusty, who sported a new flat-top and had an attractive bulge in his neck. She didn't brush him off. He confided that there was a cabal of the most popular kids in school. You could join only as a couple. The reward was being invited to make-out parties. Gwen was curious. She accepted the offer to be his girlfriend.

When Frieda showed no interest in hearing about this unfolding drama, Gwen assumed her friend was distracted, nervous over who would ask her. Rusty seemed no great prize to Gwen. She didn't consider Frieda might be jealous.

The next Saturday night, Gwen was in a crowded basement jitterbugging to Bill Haley and the Comets. She noted Frieda's absence but gave it no more thought once the slow dancing started. In the morning, she awoke feeling guilty. She called her friend's house. Mrs. Lowenstein promised Frieda would call her back soon. The phone didn't ring that day.

At school, Frieda ignored her. Despite understanding now how tough it would be for her not to be jealous if the tables had been turned, Gwen believed it wasn't her fault Frieda lacked the self-control to stay out of her refrigerator or that none of the boys wanted a fat girlfriend.

The parties continued. Though Gwen made a few girlfriends, she wasn't comfortable enough to trust any of them with her secrets, not like she had been with Frieda. She missed Frieda and plotted ways for them to make up. Gwen intended to be generous, to take full responsibility for their estrangement.

After Thanksgiving, Frieda wasn't at school. No one, not even their home room teacher, knew why. Gwen called for days until finally Mrs. Lowenstein answered the phone and told her Frieda was in LA Children's Hospital, seriously ill. She urged her to visit.

Gwen had never been inside a hospital. Just the word frightened her. She dutifully took a bus to the twelve-story pavilion on Sunset Boulevard. Frieda was on the top floor in a private room that smelled of bleach. Her skin was as white and fragile as tissue paper. Blue blotches covered her arms. Her body had shrunk. Plastic tubes descended from glass bottles hanging high above her bed and converged beneath a square of gauze taped to her neck. Frieda looked terrified.

“What happened?” asked Gwen, tears streaming down her cheeks.

“There's something wrong with my blood,” sobbed Frieda. “Nobody will explain it to me, and they won't let me go home.”

Gwen sat on the bed. She touched her friend sympathetically. Frieda pushed her away.

“I can't stand it anymore,” Frieda screamed. “I'd kill myself if I knew how.”

Gwen blanched. Both girls were too distraught to notice Frieda's father come into the room. He immediately insisted Gwen leave.

“I'm sorry, I'm so sorry,” Gwen cried as a nurse escorted her to the elevator.

Two weeks later, her mother showed her an obituary in the Los Angeles Times. Gwen read one phrase and rushed to the toilet to throw up.

“Frieda Lowenstein, age 15, died of leukemia… ”

At the funeral, Gwen had to use her mother as a crutch to walk into the sanctuary. She was relieved no one seemed affronted by her presence. They were all weeping or overwhelmed by grief, except for the rabbi who led the service. His calm incantations were soothing. She followed little of his eulogy, but he did say one thing that stuck in her mind.

“The death of a child is our ultimate test of faith.”

Gwen had always half-heartedly hoped God would take care of her. Frieda's death now made faith a cruel joke. At best, her death was senseless. And if Frieda didn't deserve to be spared, why would Gwen?

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