Sensing Light (15 page)

XXII

K
EVIN WALKED TO THE
clinic waiting room doorway and called the first name on his afternoon schedule, a new patient, Tommy Paulson. A short, slender man with thinning brown hair stood up. Kevin introduced himself and ushered the man into an exam room.

Once they were seated, he affably asked, “What brings you here?”

Speaking to the floor, Mr. Paulson said, “I read about you in the
Advocate
. You're the gay cancer specialist, right?”

“I am,” said Kevin, deferentially subduing his usual upbeat approach. “Why don't you tell me about yourself, where you're from, what you do, whether you've ever been hospitalized or take any regular medications. Then we'll get into the concerns that brought you here.”

Tommy Paulson was shy. He gave an abbreviated account of growing up in rural Pennsylvania and obtaining an engineering degree in college. He was thirty, lived alone, and worked for a construction firm. He had never been in a long-term relationship. There had been no health problems, other than an episode of gonorrhea, until a flu-like illness began six months ago. The fatigue had persisted. Then he started having diarrhea. He had already been to one doctor who ordered blood and stool tests which failed to reveal a cause for his symptoms. Two weeks ago, he noticed a white substance coating the roof of his mouth and made the appointment to see Kevin.

A physical exam confirmed Tommy had thrush. The lab results he showed Kevin included a lymphocyte count well below the lower limit of normal. There was going to be bad news to give, but this was not the time. Kevin needed to go through the motions of ordering and interpreting more tests. He needed more contact to establish credibility and rapport before Tommy would believe his prognosis and trust Kevin to help make the rest of his life as bearable as possible.

Though pressed by his new patient to make a diagnosis on the spot, Kevin stood his ground.

“There are viral and parasitic infections, some autoimmune diseases too, that can cause a prolonged illness like this. Let's find out for sure what we're dealing with, OK?”

Tommy was mollified, which Kevin used as an opportunity to ask what drew him to engineering. Tommy described the blueprints he created, the pride that came from seeing his drawings transformed into office buildings and industrial plants.

Kevin imagined a ten-year-old Tommy spending rainy days assembling an Erector Set. He envisioned a boy so adept with his fingers he wouldn't be frustrated by working hex nuts onto bolts in a tight space. Kevin had done it as a child. He hadn't minded the repetitious fabrication—constructing girders, tying and cross-bracing them into a bridge, even adding a second or third tier. Anticipating the completion was half the fun.

Kevin gave Tommy a return appointment slip and was about to say goodbye when he sensed his patient wasn't finished.

“Any other questions?”

Tommy declined. He started to leave but paused at the doorway.

“I don't get it. I mean, yeah, I tried the bathhouse scene a few times. It wasn't for me. I'd only had sex with a couple of people before that, and there's been nobody since. And I never, ever used poppers. I just don't get it. There are all these men who've been at the glory holes forever. They're fine. Why me?”

Kevin had no answer.

XXIII

O
N
S
ATURDAY, ONE OF
the chief residents rounded with Gwen's interns so she could have a day off. Rick was already out running when she awoke. Eva wouldn't be up for hours. Gwen got of bed and made coffee. She sat at the kitchen table, mulling over the strategy she had settled on. The more she considered it, the sounder it seemed. She was going to be living for her daughter and lover now. Their inner peace mattered more than hers. She could be oblivious to the uncertainty of her own fate as long as she was sure they were all right. It was a relief to have clarity at last. Gwen was ready to put her plan into action.

She went to a neighborhood pharmacy. Avoiding all eye contact, she purchased a packet of condoms. When she came home, Rick was at the kitchen table, grading history quizzes. She sat next to him, resting her head on his shoulder. He gave her a long inquiring look and returned to work. She sat still, trying to be mindless, unable to sustain it. She stroked his calf. He stretched languidly. Her hand drifted to his back. He kept marking papers. She kissed him on the neck.

Rick let go of his red pen. They rose as a unit, moved to the bedroom, undressed, and lay down wrapped around each other. She wanted sex but was too scared to take pleasure in it. Rick felt the tension in her thighs, the absence of her familiar abandon. He stopped moving. Gwen nestled under his arm. She began to cry softly.

“It's going to be OK,” he said. “We'll get through this. We will.”

Looking up, she saw his wet eyes and believed him.

XXIV

K
EVIN AND
M
ARCO ALSO
slept in on Saturday morning. They awoke to bright sunlight and after breakfast drove north to a trailhead in Point Reyes. The fog here hadn't burned off yet. Fortunately, the path they chose stayed close to the floor of a winding, forested canyon, protecting them from cold sea breezes. By the time the trail climbed to an exposed, grassy plateau, they were warm from their brisk pace and invigorated by the sudden drop in temperature.

Two hours after leaving the car, they arrived at a bluff overlooking the ocean. The hike had flown by for Kevin. Not a muscle or joint was protesting. He was energized. Maybe Marco is right about exercise, he thought.

Marco ran the last hundred yards to the cliff's edge. He searched the water below and waved excitedly. His thick eyebrows were bouncing in delight. Kevin caught up with him and faced an expanse of gray, wind-battered sea. Marco pointed to a band of clear water where dark shapes, diamonds and crosses, floated beneath the surface.

“Bat rays and leopard sharks,” Marco exulted.

Staring in awe, Kevin said, “Holy Mother …”

“Holy what?”

Kevin laughed and spread his arms wide.

“This is what the church wants,” he proclaimed.

Marco looked puzzled.

“For us to be dazzled and spellbound before God's great creation.”

“
Querido
, I think their first priority is having us be passive and guilty so we're easy to manipulate.”

“That's only because they decided to raise fortunes and build cathedrals instead of celebrating mass in places like this that would have cost nothing.”

“
Dios mio.
He's a visionary now. Move over Joan of Arc, make room for Saint Kevin of Distressed Automobiles.”

On their way home, they stopped at the road's high point to view a rolling carpet of round hills, lush early this year from a series of October storms. The late afternoon sun was behind them as they silently watched swells of grass slowly change hue from deep emerald to a soft pine shade.

This was how Kevin had always imagined serenity would feel.

“What are you thinking?” he asked Marco.

“That winter is my favorite season here. These green hills, they go on forever, full of possibility.”

Kevin kissed him on the lips.

A Plague, 1984

I

K
EVIN WAS DRIVING TO
City Hospital, headed in the opposite direction from the downtown hotel where he was supposed to be lecturing in two hours at the department's annual conference on new developments in internal medicine. Ray Hernandez had told him four hundred physicians were registered to attend. He had never spoken to so large an audience of doctors and had been worrying about it all week, until paged last night by an intern. His clinic patient, Tommy Paulson, had been admitted. Now Kevin's anxiety was about him.

This was Tommy's third hospitalization for dehydration in a month. The cause was a gut parasite resistant to all available drugs. Maximum doses of constipating medications couldn't prevent him from having ten to twenty watery stools a day. After his last admission, Kevin arranged for a home care company to give him continuous intravenous fluid infusions in his apartment. Despite such aggressive treatment, Tommy was severely dehydrated again. Kevin had to prepare him for the end.

As soon as Kevin entered the room, Tommy saw the resignation on his face. Before he could say hello, Tommy began wailing.

He sat on the bed and held Tommy's hand.

“I am so, so sorry…”

Kevin considered praising Tommy for how courageously he had struggled, what an inspiration he had been to everyone in the AIDS program, but these expressions of heartfelt empathy and battle metaphors were becoming trite. In any case, he had learned that his initial take on Tommy's capacity for insight was an underestimation. No cliché would ring true for him. Kevin
needed a new approach to end-of-life conversations—a more creative, more authentic one.

To keep doing this work, Kevin was realizing, he had to be sure he was providing comfort, which at a minimum meant giving his dying patients the respect of a spontaneous reaction.

An idea came. Kevin lay down on the bed.

“Hey, Tommy. Tommy,” he sang softly like a lullaby.

This seemed to calm Tommy.

“Let's try something,” Kevin suggested. “It's a thought experiment.”

“A what?”

“You'll see. Tell me about your favorite childhood memory, one that makes you feel really, really good.”

Tommy concentrated.

“OK. Playing tag on the bank of the Susquehanna River.”

“Why's it your favorite?”

“The warm sunlight. Cool, thick grass you could almost bounce on. After tag, I jumped in the water. I was completely free then. Now I can't even get out of bed on my own.”

“Perfect! Now, can you to imagine that place in the year 1900?”

“I guess so. It probably wasn't much different than when I was kid.”

“Can you imagine
yourself
there in 1900?”

“Me? At the Susquehanna?”

“Yes, in 1900, not 1950, a lifetime before you were born, even before your parents were born.”

“I'll try…”

“Tell me what you're doing.”

Tommy's limbs relaxed as he thought.

“Floating on the river, being carried downstream by the current.”

“Are you afraid?”

“No, the water's buoying me up.”

Kevin patted his knee.

“That's where you're going, my friend. You're going to be part of that river again.”

“Huh… Hey, that's a nice trick, Doc. It's less scary thinking about it your way. Guess I've already been dead, haven't I.”

“Exactly! Can you be OK with that?”

“It's gotta be better than this.”

Kevin kissed Tommy on the forehead and said goodbye.

II

K
EVIN'S BELLY STARTED TO
cramp as he watched Ray Hernandez stride toward the podium. Scanning the hotel ballroom, he couldn't see an empty seat. There had to be at least five hundred people here. He became aware of another unpleasant sensation. Sweat was running down his flanks.

Kevin had spoken to audiences of two hundred doctors. Ray had told him speaking to two thousand wouldn't be any more intimidating. From the podium, he explained, you can make out at most two hundred faces. The rest are a blur in the background. Kevin was not reassured.

“It's my great honor to welcome you,” said Ray, beaming with charm.

Kevin focused on his boss's amplified voice, confident and mellifluous. He hoped he could mimic it. Although he had been wary when the new chief of medicine took over at City Hospital, unsure of what it would mean for his fledgling career, it was hard not to like Ray. Especially once it was apparent that Ray wanted to see him succeed as much as Herb did. This kind of regard from an older man had been outside his experience before coming to San Francisco. Even Kevin's own father had shown little interest in what he might make of himself.

“Our opening lecture will be given by one of the world's experts on a new disease that has captured the medical community's attention, Acquired Immune Deficiency Syndrome—AIDS for short. Many of you know the syndrome by its former name, GRID, which was changed when it became obvious the disease is not exclusively ‘gay-related.'”

Kevin's heart was racing. He tried thinking of someplace tranquil. Ray's home came to mind.

“Our speaker, Kevin Bartholomew, leads the AIDS program at City Hospital, a new division of our department of medicine which I established because the number of patients with this condition is growing so rapidly in
San Francisco. But take note. AIDS won't be limited to a few ‘liberal' US cities. It will become an important disease globally—as you'll hear when Kevin shows you data emerging from other parts of the world.”

In a last ditch attempt to control his anxiety, Kevin visualized Ray's collection of yarn paintings, the tremulous combinations of bright colors, plush zigzag, and round shapes—the sun, a man aiming a bow and arrow, peyote cactus. But it was time to walk to the podium now.

It'll be over soon, he thought grimly.

“We're also proud of Kevin's creative productivity. This year alone, he's published papers in the
Annals
, the
Journal of Infectious Diseases,
and…”

Ray savored the moment, keeping the best for last, a feather in his cap for having supported Kevin from the beginning.

“The
New England Journal of Medicine
,” he boomed.

Stuttering, Kevin thanked Ray. He stared at a Post-It sticking to his palm. Scribbled on it was the first sentence of his talk. The words made sense, but he didn't know what to say next. He pressed a button that advanced a slide carousel at the back of the room. A sketch appeared on the screen depicting the structure of a novel retrovirus named HTLV-III. Laboratories in Paris, San Francisco, and NIH had just simultaneously discovered it in lymph nodes removed from patients with AIDS. Those with the syndrome of milder signs and symptoms that often preceded AIDS—AIDS-related complex, or ARC—also had HTLV-III in their lymph nodes.

Speaking to the screen, the words flowed. Kevin guided the audience through a series of figures that demonstrated how the retrovirus reproduced itself. Logically, effortlessly now, he described HTLV-III tricking human helper T lymphocytes into swallowing it and, once inside, hijacking the cells into making new viral particles.

His listeners were intrigued and a bit frightened by this devious pathogen that targeted the cell most responsible for coordinating human immune defenses against invading microbes. Kevin could have been telling a ghost story at a campfire as he explained the current hypothesis for the source of the epidemic. There was a reservoir of HTLV-III in a remote central African
forest from which the retrovirus had crossed from chimpanzees to humans, who then transported and transmitted it around the world.

The room hushed when he said patients with AIDS were the tip of the iceberg. A larger population of people with ARC and a far, far larger population of asymptomatic HTLV-III- infected individuals might all eventually progress to AIDS. Worse, this was a global epidemic. The number of new AIDS cases in the Americas, Europe, and Australia was doubling every six months. His bleakest slide estimated that a quarter of a million people in the United States alone were already carrying the virus.

He ended with three “good news” slides. First, the risk of viral transmission to health care workers exposed to AIDS patients' blood appeared to be very, very low. Only one proven case had been documented, a nurse in England who had no risk factors other than an accidental needle-stick. Second, a diagnostic antibody test was being developed. As soon as it was proved to identify retrovirus carriers accurately, any infected blood donors could be screened out, eliminating transmission of the retrovirus by transfusions. The antibody test could also be used as a public health tool to prevent further sexual transmission. Third, and most important, understanding the structure of HTLV-III had given bench scientists targets for designing drugs to treat the infection and halt the immune system damage it caused.

Kevin finished by thanking Ray for the invitation to speak. He glanced at the red digital timer below the podium. It read twenty-nine minutes. He pressed the reset button, gratified his lecture was done before the timer reached thirty and a light would begin to flash. He heard a crackling din like surf. He looked up from the timer to see everyone in the hall clapping.