Sensing Light (31 page)

VII

A
FTER A TWO DAY
fast, Kevin was pain-free, though groggy from all the morphine. Herb tapped on the half-open door and saw he was dozing. One hand rested on a manuscript. The other held a ballpoint pen. His eyelids fluttered then lifted.

“Thanks for coming,” Kevin croaked.

Having steeled himself to see Kevin writhing in pain or too somnolent to talk, Herb was relieved.

“I just heard,” Herb began.

He stopped short, fearing whatever he said next would be clumsy.

“This isn't the end of the line,” said Kevin, completely alert now. “There's a new a thymidine analogue like AZT. Dideoxy-didehydrothymidine, D4T. And it's more potent than AZT or DDI. At least in cultured cells it is.”

“Can you get it?”

Herb wished he could have asked that question with enthusiasm, but it was hard for him to believe another drug like AZT wouldn't also quickly lead to resistance, and he was too poor an actor to pretend otherwise. He had recently heard Rajiv Singh lecture. The scientist's pessimism about this specific issue had been persuasive.

Failing to note Herb's subdued reaction or perhaps dismissing it, Kevin said, “A Phase 1 trial is starting soon. I already called NIH and got my name on the top of the list.”

Herb did his best to give a credulous smile.

“Herb,” Kevin said, suddenly downcast, “I have to get over this before I can go back to work, and by then it'll be time for me to take off for NIH. I can't keep dumping all the responsibility on Gwen. What should I do?”

Herb considered the dilemma. Glad to have an excuse to think objectively, he paced around the room until an answer came to him.

“I think you should go on sick leave. Make Gwen the temporary division chief.”

“No! That'll chain her to her desk.”

“I don't think so. No more than she already is. It'll give her more weight in negotiating with the hospital and the university. She'll spend less time spinning her wheels and feeling frustrated. It'll also give her the authority to appoint Karen or David as assistant director. She can offload running the clinic or supervising the administrative staff to one of them.”

“Ugh,” Kevin groaned. “Those two are finally playing well together. That would totally disrupt the delicate balance of power between them. I guarantee they'll each find a reason to be jealous about it.”

“Not if she appoints them both as co-assistant directors.”

Scowling, Kevin said, “It's still going to seem like shit flowing downstream to them. I can't risk that. Those two are the program's future. They need more of their time protected, not less.”

“I don't think they'll see it as a dump. It'll be a sign that you and Gwen really trust them and think they're ready to handle more responsibility.”

Kevin wrinkled his nose.

“You're right,” he guffawed. “There'll be a ribbon around the turd she hands them.”

Herb laughed.

“This'll have to come from me,” said Kevin thoughtfully. “I'll ask them. I'll plead. If they're doing it for me, they won't resent Gwen.”

“There you go,” said Herb. “A perfect solution.”

“Nice try,” Kevin said and wagged a finger at him. “You almost made me believe I figured it out myself.”

Herb looked away innocently. Then he sat down on Kevin's bed.

“So, what's the paper you're writing?”

VIII

I
T TOOK TWO WEEKS
for Kevin to regain the strength to go back to work, but he returned with the same tenacity and optimism. On a late September morning, he and Gwen were chatting in his office when the intercom buzzed. Freddy told him Neal Canaan from the NIH Clinical Center was on the line.

“My D4T dealer,” said Kevin as he grabbed the phone.

Gwen tensed. She tried to smile. Kevin had lost more weight since leaving the hospital. She couldn't convince herself it was simply the lingering aftereffects of pancreatitis. He needed to start some kind of antiretroviral therapy soon.

“Hi, Neal!” said Kevin, mustering all his buoyancy and charm.

As he listened, his face sagged. His posture drooped. Gwen felt her own heart speeding. This had to be bad news.

“Thanks,” Kevin said in a monotone. “Yeah, call me when you have more data.”

He hung up the phone and looked vacantly out the window. Gwen waited for him to speak until she couldn't bear it.

“What did he say?”

“They got results from an animal study. Some rats given D4T died of pancreatitis.”

“But you don't have pancreatitis
now
.”

“They're excluding anyone with a history of pancreatitis for safety reasons. It's a Phase 1 trial, Gwen. They have to, or the FDA won't OK it. There might be another trial I can be in, after there's data from animals given lower doses for a longer time…a lot longer time…at least a year.”

He gazed at the brown hills north of Golden Gate Bridge.

“In a few months, they turn green,” he murmured. “I'll see that.”

Gwen sat on his lap and put her arms around him. She lay her head against his neck and heard his bounding pulse. She didn't cry.

IX

I
N MID
-O
CTOBER
, K
EVIN WAS
hospitalized again, this time for Pneumocystis pneumonia. The work of breathing had become a marathon he hadn't trained for. He couldn't walk from his bed to the bathroom without collapsing, even with oxygen prongs strapped to his face and a nurse supporting his weight. So he wore a diaper and evacuated stool in a bedpan. His strength was totally spent by the act of sitting up. Trying to do more made consciousness flicker and wane.

He acquiesced to the facts. This was what would remain of his life. It would be brutal, and there would be nothing afterwards. But these ruminations led to questioning the truth of any certainty about “afterwards.” Cycling acceptance and denial absorbed all his attention until he remembered a dying patient once telling him a story about the Susquehanna River in Pennsylvania. Kevin had never been there. Now he surely would never see it. No matter, he decided. Fantasies were better to dwell on than the void he was hurtling toward. He tried to imagine the Susquehanna as a bucolic Eden, using what he could recall from rafting the Colorado. Then memories of another, harsher river experience intruded.

In the summer of 1960, as a pre-pubescent Boy Scout of the Star rank, Kevin was expected to endure physical challenges. His first was to carry a twenty pound backpack across twenty miles of muddy, riverside trail in ninety degree, humid heat. The boys hadn't been advised to break in their boots before the ordeal. By mile five, everyone was complaining of blisters. By mile ten, pain incapacitated speech. Kevin hobbled for weeks after the hike. He considered quitting but was proud of the badge he had earned and wanted to pin a Polar Bear medal next to it on his sash.

He had to wait for the opportunity until February, when an arctic cold front drifted down from Canada. The temperature forecast was ten below
zero. The boys' fathers encouraged their sons to prove their mettle by camping out on a fallow corn field near Brockton. They had volunteered to come along and supervise from inside a wood-heated farmhouse where they could play cards and sip whiskey.

The troop reached the field at sunset. While the boys scrambled to pitch pup tents, their fathers made a bonfire and served them lukewarm hot dogs with canned beans, before retiring to the warm house. Kevin shivered in his bedroll, wearing every article of clothing he had brought. Snippets of sleep came with nightmares of being alone on a frozen pond he had seen from the car that afternoon. He kept falling through the ice and couldn't climb out of the water, his numb arms and legs useless.

At first light, the boys gathered fallen pine branches for a great pyre. They rotated in front of the blaze, distributing its warmth around their bodies. They basked in the knowledge they had just come a quantum step closer to manhood. Surviving the night was proof their bodies were capable of more than they had believed. When their fathers joined them by the fire, no one spoke. Kevin looked at his scout mates and saw they shared his own cool regard for their old men. I can make it on my own, he had thought.

“And I have made it on my own, ever since,” he said, not caring that he was talking to himself. “For almost thirty years. What's so tragic about not having another thirty years? What's the difference between thirty and sixty or even ninety years in the bigger scheme of things? All of those numbers are ridiculously short, and everyone lives under that condition whether they choose to think about it or not. Get over it, Kevin!”

X

K
ATHERINE AND
F
RANCINE FLEW
to San Francisco on Halloween in the midst of a series of Pacific cold fronts that were battering the city with rainstorm after rainstorm. From the airport, they took a taxi to the hospital. Kevin no longer needed oxygen, but a second opportunistic infection had been diagnosed. Mycobacteria had spread throughout his body, causing persistent fevers and more weight loss.

Francine struggled for three long days at maintaining her composure before finally succumbing to grief. Witnessing her son's physical disintegration was intolerable. She returned to Boston alone
.

As soon as he was in his apartment, Kevin was desperate to get outside and see the greening world. Once the rain let up, he made Katherine take him to Tilden Park, high above the Berkeley campus. She pushed him in a wheelchair to a point where they could view Mount Tamalpais to the west and Mount Diablo to the east.

“This is the place! According to Marco…”

He couldn't remember why it had been so important to come here.

“I think local Indians believed this place was… Didn't I already tell you about it?”

“You said something about Indians. I forgot the details.”

Kevin looked at the jade-tinged Contra Costa hills rolling east to the horizon. He concentrated. He was sure he had been at this very spot with Marco. It wasn't an invented memory. But all he could recall now was their camping trip in the Mojave Desert.

He was buffeted by waves of anger and self-pity which vanished as quickly as they had arrived. Dust devils, he thought. He fixed his attention on Katherine.

“You're buff, Sis. That was a mile and a half uphill.”

Katherine squatted down to see the panorama from his eye level.

“Guess what?” he said. “I've discovered the great irony of facing death.”

“Which is?”

“Epiphanies bloom, right as time and energy are fading. It's like Dad's favorite cliché, ‘youth is wasted on the young.' Well, death is wasted on the dying.”

She was baffled.

“I mean there's this emotional intelligence that comes with accepting the end. Lots of people have written about it. Anyway, the irony is that it's wasted on me. The closer I get to the end and the more clearly I can see the big picture, the less I can say anything coherent about it.”

“Keep trying.”

“You really want to hear this?”

“Absolutely. What are your epiphanies?”

“You would ask that, wouldn't you,” Kevin laughed. “All right. Here's one. Approaching death isn't about resolution for me. It's about completion.”

Katherine was puzzled again.

“There goes my lucidity.”

“Don't stop.”

“How to explain? OK. Life's great disappointments is a good example. You'd think resolving your unmet expectations would be the key to dying peacefully, right? Not for me. I just want the kind of satisfaction a mechanic has after rebuilding an engine—knowing it all fits together—and I have it.

“And if that's too abstract, how about this? Even though I wish I'd had children, I'm not consumed by regret. Honest, Katherine, I'm not trying to rationalize my way out of self-pity. My default mode is to wallow in it. I don't know why, but I can't think about the joy I missed without also imagining having a kid who becomes a hateful skinhead or suffers from some terrible disease. So when I look back now, I don't just see the tragedy of unfulfilled fantasies. I see the pain the downside might have led to as well. So, I'm content with how things played out. It's weird.”

Comprehension dawned on her face.

“Tell me more.”

“Hmm… See these fir needles, the birds, the early grass. Remember the twin babies we passed. Living creatures are so tenuous, aren't they, so miraculous. It's wonderful to be certain they'll still be here after I'm gone.”

Katherine shuddered.

“It's not morbid. I'll be part of it all, even if I can't influence what happens or be conscious of what's going on. At least not in the way we think of being conscious, which always relates to ourselves.”

She frowned, having lost his thread.

“It's the Zen paradox at the heart of Catholicism!” he shouted.

Kevin spread his arms like a symphony conductor beginning an overture.

“I get it,” she said and hugged him.

“Don't bury me in a grave,” he ordered her. “The atoms that make up my body won't disappear. I want them out in the world! I want them to be building blocks for new life.”

“Kind of like being here, even if it's not you?”

“Oh my God, Katherine! You're a mystic. Nobody I've talked to about this has understood but you.”

XI

B
Y
T
HANKSGIVING
, K
EVIN WAS
unable able to walk. The retrovirus had invaded his spinal cord and was destroying motor nerve pathways to the lower half of his body. He still had the strength to transfer between his bed and a wheelchair and could remain in his apartment with help from a home health assistant on weekdays and friends on weekends. The last Saturday of November was Gwen's turn.

After cleaning his kitchen and bathroom and doing a bit of shopping, she bundled him in a forest-green wool sweater and black watch cap and put his wheelchair in the trunk of her car. He wanted to go to St. Ignatius and the arboretum in Golden Gate Park.

Gwen had never been to St. Ignatius. She thought its two bell towers, freshly painted alabaster white and capped by bronze cupolas, quite lovely. Inside was a sanctuary with an arched ceiling. The space was illuminated by rows of stained-glass windows, each a portrait of a notable saint. An organist was playing Bach fugues. They sat quietly as contrapuntal melodies chased each other around the empty nave. Kevin hunched forward, his breathing labored from getting out of the car and into the wheelchair.

Gwen was overwhelmed by his imminent absence. She felt desolate and simultaneously grateful to have this time alone with him. She held his hand. He gripped hers tightly in return.

Kevin took a tissue from his pocket. He dabbed her cheeks.

“I hope you're not converting to Catholicism on my account,” he said dryly.

“God, no,” she laughed.

“That's good to hear. You know, this was always my favorite building in the city, but I'd never been inside.”

“Me neither. What do you think?”

“It's like the minor basilicas of Boston. I spent too much of my childhood being miserable in places like this. Up close, it's nothing special. It's only beautiful from far away, framed by hills and the bridge.”

“The music's nice.”

“It's depressing in here. Let's go. I don't know why I wanted to come. What was I thinking? Churches are dismal. All the wealth and effort wasted on building a sterile vault, a monument to a non-existent afterlife, when it could have been used to help the living, the suffering.”

“Hey, did you see the poster at the entrance about a service in memory of Archbishop Romero?”

“Who?”

“Oscar Romero, the archbishop assassinated in El Salvador for speaking out about government killings during their civil war.”

“Romero? Didn't he try to talk the Pope into taking a stand? Not successfully as I recall.”

“Well, St. Ignatius is honoring him.”

“They didn't have liberation theology in Boston when I was growing up,” he brooded. “Anyway, I gave at the hospital, Gwen. I gave and gave and then gave more.”

“I know you did,” she said and wrapped her arms around him.

Kevin's mood improved once he was being pushed along the arboretum paths. They passed through a meadow to a stand of South African silver trees, cedars, and heathers, then stopped in a patch of California wildflowers—orange poppies and pink buckwheat.

“There's rosemary somewhere,” he said, sniffing. “Smell it?”

“I'm not sure.”

“It's spicy, pungent.”

“Got it! A scent between sage and bay leaf, right? But not as sharp.”

“You have wonderful descriptive powers, my dear.”

Watching a pair of gulls flitting among treetops at the meadow's edge, Kevin inhaled deeply.

“I know why I wanted to come here,” he said.