Sensing Light

by Mark A. Jacobson

  “You?” she said, unable to imagine him even considering such an act. “I don’t believe it.”

  “Yes, me, while I was at NIH.”

  “Oh, my God!”

  “I was covering the Clinical Center. A ten-year-old boy with leukemia who’d failed two previous rounds of chemo was admitted. The oncologist suggested a course of deep salvage therapy to the parents. I think they were ready to accept it was over, but after hearing his pitch, they couldn’t write off the possibility of a miracle. So they agreed. I happened to know that every leukemic at the Center who’d failed prior regimens had died within two weeks of getting this one. But I wasn’t an oncologist and had to keep my mouth shut. Predictably, the boy’s platelets fell through the floor. Soon he was choking from nosebleeds despite transfusions. The oncologist came by, told the parents how sorry he was, wrote a do not resuscitate order, and left. The mother became hysterical, the father catatonic, and the kid couldn’t stop retching blood. That’s when I decided to play God, the merciful God we all wanted to trust in as children.”

  “How did you do it without the staff seeing?”

  “A lot of morphine was pushed on the unit. I put an empty vial in my pocket and looked for used syringes and open ampules by a bedside. I’d go in to examine the patient, which meant closing the drapes. It only took a couple of hours to squirrel away a hundred milligrams. Then I pushed it into the boy’s IV. Seconds later, he stopped breathing. I waited until he flat-lined before calling a nurse.”

  Gwen rolled her chair next to Herb and stared at him.

  “Weren’t you terrified someone would report you?”

  “For a week I was scared shitless. We had a baby. My wife wasn’t working. If I had lost my license…”

  “Oh no,” she moaned.

  “But after that week went by and nobody said anything or looked suspiciously at me, being caught seemed more and more implausible. My rationality got back in control.”

  She shook her head slowly.

  “Gwen, you and I aren’t the only ones who’ve ever done this. And here’s the important part. For months afterwards, I kept waiting for justice to be meted out. Yet my inexcusable hubris went unpunished. No panic attacks, no insomnia, no self-recriminations. In fact, the more I went over it, the more convinced I was that I’d done the most decent thing possible, and the more certain I was that I’d chosen the only option I could live with. I was no hero, but I was no monster either. I did what had to be done to end a family’s unbearable suffering. Fortunately for me, I’ve never had to do it again.”

  Herb’s tale gave Gwen enough solace for exhaustion to take over. She slumped against his shoulder. Immediately, she felt him stiffen. Herb inched away from her. She stood up and started apologizing.

  “No, Gwen. This is my problem. Hell, if we can’t even be here for each other in situations like this…”

  He couldn’t complete the sentence.

  “That would be pathetic, wouldn’t it,” said Gwen.

  “Exactly.”

  She made a fist to show her steadfastness.

  He clasped it and gave her an encouraging squeeze.

  “You’ll do fine on Monday,” he said.

  On his way home from the hospital, Herb thought of Sister Anna. He wanted to ask her about the confessional booth. What went on inside there suddenly intrigued him.

  XXVII

  AFTER CLINIC, KEVIN DROVE to the airport to pick up Marco. The moment he got out of the Rambler, his anxiety grew with a vengeance. He tried to think objectively. Of course Marco was going to be jealous, but they could work through it, couldn’t they? If not, there was couples therapy. Reasoning didn’t help. Thinking of Marco only intensified his fear.

  Inside the terminal, he distracted himself by adding up all the frequent flier miles he had accumulated in the last year. He had been to meetings in Atlanta, Paris, Washington DC, New York, and Chicago. There were other young physicians from academic medical centers around the country at these conferences, people like Kevin who were dedicating their careers to AIDS research. They had made a tradition of going out to dinner, getting inebriated, and revealing their personal histories and dreams. They called themselves “AIDS doctors” with a mixture of self-deprecation and pride. Kevin reveled in their fraternity. The scientific sessions were exhilarating, too. It had dawned on him that he had something worthwhile to contribute. He was reminded of a talk he had just been invited to give at an Australian symposium in January, the middle of the summer there, and a European meeting scheduled for March.

  As Kevin was calculating how much time he would have to write papers on these long flights, the door to the jet way opened. Passengers began trickling out.

  Marco emerged, head down. The tip of his tongue kept reappearing to wet his lips. He looked up, and Kevin saw his pupils were dilated. The mobile eyebrows he always used in greeting people didn’t move.

  After the strangeness of their perfunctory kiss, the barriers Kevin had been carefully constructing crumbled. He could no longer ignore the conspicuous evidence. Marco’s flu last summer had never quite resolved. He had stopped running months ago.

  No, thought Kevin frantically. He didn’t say he was sick on the phone or in his letters. He must be over it by now.

  But Marco didn’t look well. He was pale and had lost weight. Kevin recalled waking in the middle of the night while Marco was changing his tee shirt. The bed sheet had been damp. Kevin had gone back to sleep, believing it was a nightmare—a recurrent nightmare because it had happened more than once.

  Kevin was reeling. He couldn’t remain suspended in disbelief any longer. There were no rational explanations left.

  Tugging at his arm, Marco led him to a vacant gate. Refusing to speak, Marco watched the passing crowd, waiting until no one was nearby before he turned to face Kevin. Marco opened his mouth wide and shrieked as he pointed to the white plaques inside.

  A Holocaust, 1986

  I

  BOTH HAD SLEPT RESTLESSLY, Kevin barely at all. Marco’s morning started with a headache followed by nausea and dizziness. At last, he was sleeping again. Kevin stood alone in the kitchen, brewing a cup of coffee, drained of all feeling except a dull, throbbing stomach ache. His mind was empty except for a single nagging question. Why doesn’t he want to end it?

  Marco was always plagued by one symptom or another, often in such agony Kevin could hardly bear to be with him. Sleep came only when he was too tired to react. His weight was down to a hundred and ten pounds. Half his lush hair was gone. His formerly taut abdomen was distended. The muscles that once rippled through his legs and buttocks had evaporated, leaving dismal convexities. New lines and folds appeared daily in his face.

  Marco said he was unafraid of death, and Kevin believed him. They had talked about what to do if life became intolerable. At Marco’s request, Kevin had obtained sufficient morphine and phenobarbital. The bottles were in plain view, on top of their bedroom dresser. Obviously, Marco wasn’t ready yet, but if their situations had been reversed, Kevin was sure he would be by now.

  When sorrow surged, Kevin made no effort to halt it. He would lock himself in a bathroom. After a paroxysm of crying, he was able to cope again.

  He occasionally imagined a future after Marco’s death. One fantasy he conjured up involved a remote Irish monastery where he knelt praying in a brown-hooded robe. A useful fantasy because when indulged in, Kevin became so incensed by his absurd, maudlin self-pity that he could turn his attention to the outside world, which at this particular moment meant his meeting on Monday with the AIDS Action Committee. They were calling him a Nazi for not storming Burroughs Wellcome corporate headquarters with a sub-machine gun to demand AZT for the masses.

  Anger was a good antidote for desolation, like an itch that distracts one from pain. However, Kevin had thought this through. The rational approach was a better strategy for this meeting. His plans for the hour or two he might have free until Marco woke up included writing a hand-out to give to the committee mem
bers.

  Sitting at his new home computer, Kevin typed confidently. He knew the data. He had been a local investigator in the multicenter trial that proved AZT’s efficacy.

  The Facts

  AZT treatment did prolong AIDS patients’ survival in this trial. 16 people randomly assigned to receive placebo died compared to 1 assigned to receive AZT.

  Consider the context. It was a very short study. People were on their randomly assigned treatment for just four months. There have been no other trials to date.

  Consider the toxicity. 21% of those getting active drug had severe anemia requiring multiple blood transfusions compared to 4% of those who received placebo.

  What’s Not Known

  Is it safe to take AZT for any longer than four months?

  Will survival after a longer course of AZT be any better than taking nothing?

  What if the trial had been continued for a full year? Might there have been more deaths on AZT than on placebo?

  What Needs To Be Done

  An observational study of AZT treatment with longer follow-up, exactly the protocol that Burroughs Wellcome and the FDA are collaborating to implement. No one will get placebo. Everyone will get AZT. Everyone will be monitored rigorously and uniformly.

  The phone rang. Kevin didn’t pick it up. He waited as the answering machine played its message. He heard a familiar voice, a friend from Marco’s lab. She asked how he was doing. She also wanted to know if he was taking AZT yet. A well-meaning inquiry, one might suppose, if her tone hadn’t been that of a police detective. This irked Kevin. He knew watching Marco’s body deteriorate gave his friends a heightened awareness of how tenuous their own lives were. But some had the magical belief that a search and destroy mission to get every bit of medical information about Marco’s condition could abolish their own anxiety. They justified their intrusion by thinking they were being sympathetic, never considering how their questions might make Marco and Kevin feel.

  There was something else troubling Kevin. How could he explain to this woman why Marco wasn’t taking AZT when he was the local gatekeeper, controlling access to the drug? In the randomized trial, Marco hadn’t met the entry criteria, which had been designed in a careful balancing act to include those most likely to benefit, people with advanced immune suppression who still had the physical reserve to tolerate AZT’s toxicity, and exclude patients such as Marco who had already been wasted by multiple complications of AIDS. For the same reasons, Marco would be excluded from the compassionate-use AZT distribution planned by the FDA and Burroughs Wellcome. Kevin had seen the anemia and the muscle toxicity AZT caused. He knew the drug would be at best a double-edged sword for Marco. He had also talked to Rajiv Singh, whose assessment was more pessimistic.

  “I hear NIH can culture the retrovirus from the blood of patients taking AZT,” Rajiv had said. “So, obviously it’s no cure. Short-term benefit—that’s plausible. But the virus will mutate and become resistant. Then these patients will be left with only the drug’s toxic side effects.”

  Kevin wanted to call the woman back and tell her he was pulling strings to get hold of the drug for Marco, who was willing to suffer for his friends so they could rest assured that everything possible was being done.

  Kevin was making another cup of coffee when the phone rang again. He intended to let this one go to the answering machine too, but Marco picked up the bedroom extension.

  “Hola,” said Marco with artificial cheeriness.

  Don’t pretend, thought Kevin, his temper re-ignited. Let them hear your misery. Drag your words out. Show them your despair. Tough shit if they can’t take it. This is about you, not them.

  “Katarina, mi corazón!” Marco crooned.

  It was Kevin’s sister. He calmed down and listened for a while. He knew Marco loved chatting with Katherine. He wanted to hear the genuine animation in Marco’s half of the conversation.

  Kevin was still surprised by the remarkable change his relationship with his sister had undergone since their father’s death. Not only had their animosities been buried. When he told her that Marco was sick, she insisted on coming to visit them in San Francisco. He was amazed to see the rapport that developed instantly between Katherine and Marco. His sister was as astonished to see him feeding, cleaning, and caring for Marco.

  Kevin went back to his computer. He stopped paying attention until Marco said sadly, “Poor Douglas... I know…Yes, teenage boys can be very cruel.”

  Kevin sighed. He couldn’t concentrate on work now.

  Moments later Marco shouted for him to pick up the phone.

  They began with small talk. Kevin automatically asked about Ben and the kids. He immediately regretted it. Her claim that they were fine rang so false he winced. He knew this, of all things, was where he should be helping her, yet he avoided mentioning Douglas’s name whenever they talked. I can’t go there, he kept saying to Marco. It’ll just make her worry more.

  Marco, in a wheelchair, rolled into the study. His were eyes blazing.

  “Tell her,” he whispered. “You can’t help her with Douglas if you’re not honest about yourself.”

  Marco wheeled around, and left the room.

  Kevin put his hand to his forehead. He’d run out of excuses that made sense.

  “Katherine,” he said gently, “Remember when you asked me about the blood test?”

  There was no noise on the line.

  “Katherine? Hello?”

  “I’m here,” she said in a small, fearful voice he had only heard once before.

  As a child, Katherine was afraid of nothing, except the dark. When he was six and she eight, a thunderstorm caused a power failure early one evening while their parents were out on an errand. Kevin thought it an adventure to find his way through the pitch-black house. He made a game of getting from the living room to his bedroom without tripping or bumping into anything. He was too focused on the quest to heed Katherine’s plaintive calls. Finally, she sobbed, ‘Kevin, are you OK?’ It was miraculous. She had always been bigger and stronger, and she flaunted it. This was the first chink in her armor he had ever seen. It was the opportunity of a lifetime to torture her. But he had heard her vulnerability and her concern for his safety. He was shocked to discover he felt protective. Naturally, the sentiment soon disappeared. After dinner that night, she slapped him for taking more than his share of dessert.

  “I got tested, Katherine. I’m positive.”

  The line was silent.

  “But my T cells are OK. Fifteen percent of infected people, they never drop into the danger zone.”

  There was a soft exhalation of air.

  “And if my T cells eventually do go down, I can take AZT. Though there’ll probably be better drugs available by then.”

  “You’re optimistic, aren’t you?”

  He relaxed. She was going to stay the strong older sister.

  “I am…You’re not really surprised, are you?”

  “I suppose not…Hey, I don’t remember you being optimistic as a kid.”

  “I’m not a kid anymore.”

  “Apparently not…Well, it’s a blessing you can take care of Marco. I don’t know how you do it and work, too.”

  “Katherine, I’m not sure your life is any easier than mine.”

  She chuckled.

  “Marco tells me the activists are on your case.”

  “No more than usual. But this time it’s making me crazy.”

  “Why?”

  “Because they want everyone who’s infected to get AZT, before we know if it’s safe, which makes me crazy because Marco should have been on AZT. But now it’s too late.”

  He heard Katherine catch her breath.

  “Sorry, I shouldn’t have said that.”

  “No,” she said shakily. “You don’t need to apologize. I feel for you, Kevin. Just let me know what I can do to help.”

  “I will,” he said in the small, fearless voice of a little boy whose older sister had begged him to find a flashlight.
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  Kevin brought a peanut butter and jelly sandwich, the only meal Marco could keep down, into the bedroom. Marco gave him an inquiring look. Kevin pointed to the sandwich. Marco obediently nibbled at it.

  “I told her.”

  Marco nodded with approval. Swallowing required too much concentration for him to consider the implications. Once confident he wasn’t going to vomit, he became alarmed.

  “How did she take it?”

  “She’s scared, but she’ll be fine. She’s tough. You were right. It was time.”

  Marco wasn’t convinced.

  “She’ll be OK. You’re underestimating her.”

  “Sí,’ muttered Marco.

  Perking up, he said, “Did you talk about Douglas?”

  “Not today. Next time.”

  “It will be so good when you do, querido. She’s not fighting it. She’s accepted he’s gay. She’s worried about what Ben might do when he finds out.”

  “She could send Douglas here.”

  “Sweetheart, that’s exactly what she needs to hear you say. But before it comes to a crisis, you should go to Boston. Tell Douglas you’re positive and what it means.”

  Kevin recoiled.

  “Querido, what good will it do for you to pay his college tuition if he dies before he’s thirty? You can’t get him to accept the truth about himself and the precautions he has to take unless you’re completely honest with him. How long are you going to wait to tell other people? Until I’m dead and there’s nobody left you can confide in? Try it out. It gets easier once you’ve done it a few times.”

  Marco’s sermons had always annoyed Kevin, and he tuned them out. Today he was listening.

  Later, while heating a frozen dinner, Kevin overheard Marco murmuring on the telephone.

  “I know. I know how hard this is. Don’t worry. He’s not in the least sick. And he’ll come. He’ll help Douglas. After I’m gone, he’ll be there for you.”

  Kevin felt another ice pick jab into his heart. But he had cried this morning and didn’t have the endurance to do it again today.