by Jack Dann
My mind wandered while she spoke. Suddenly, she was saying, "Karen? Are you going to tell me what's wrong?"
I hesitated. I had originally planned to tell no one, not even her, and now my reason for calling her seemed absurd—she couldn't have leukemia, it was unthinkable. Then, without even realizing that I'd made the decision, I found myself recounting everything in a dull, flat voice. I watched with a strange feeling of detachment the changing expression on her face; shock, pity, then a burst of fear when she realized—far sooner than I would have done—exactly what my predicament meant for her.
What followed was even more awkward and painful than I could have imagined. Her concern for me was genuine—but she would not have been human if the uncertainty of her own position had not begun to prey on her at once, and knowing that made all her fussing seem contrived and false.
"Do you have a good doctor? Someone you can trust?"
I nodded.
"Do you have someone to look after you? Do you want me to come home?"
I shook my head, irritated. "No. I'm all right. I'm being looked after, I'm being treated. But you have to get tested as soon as possible." I glared at her, exasperated. I no longer believed that she could have the virus, but I wanted to stress the fact that I'd called her to warn her, not to fish for sympathy—and somehow, that finally struck home. She said, quietly, "I'll get tested today. I'll go straight into town. OK?"
I nodded. I felt exhausted, but relieved; for a moment, all the awkwardness between us melted away.
"You'll let me know the results?"
She rolled her eyes. "Of course I will."
I nodded again. "OK."
"Karen. Be careful. Look after yourself."
"I will. You too." I hit the escape key.
Half an hour later, I took the first of the capsules, and climbed into bed. A few minutes later, a bitter taste crept up into my throat.
Telling Paula was essential. Telling Martin was insane. I'd only known him six months, but I should have guessed exactly how he'd take it.
"Move in with me. I'll look after you."
"I don't need to be looked after."
He hesitated, but only slightly. "Marry me."
"Marry you? Why? Do you think I have some desperate need to be married before I die?"
He scowled. "Don't talk like that. I love you. Don't you understand that?"
I laughed. "I don't mind being pitied—people always say it's degrading, but I think it's a perfectly normal response—but I don't want to have to live with it twenty-four hours a day." I kissed him, but he kept on scowling. At least I'd waited until after we'd had sex before breaking the news; if not, he probably would have treated me like porcelain.
He turned to face me. "Why are you being so hard on yourself? What are you trying to prove? That you're superhuman? That you don't need anyone?"
"Listen. You've known from the very start that I need independence and privacy. What do you want me to say? That I'm terrified. OK. I am. But I'm still the same person. I still need the same things." I slid one hand across his chest, and said as gently as I could, "So thanks for the offer, but no thanks."
"I don't mean very much to you, do I?"
I groaned, and pulled a pillow over my face. I thought: Wake me when you're ready to fuck me again. Does that answer your question? I didn't say it out loud, though.
A week later, Paula phoned me. She had the virus. Her white cell count was up, her red cell count was down—the numbers she quoted sounded just like my own from the month before. They'd even put her on the very same drug. That was hardly surprising, but it gave me an unpleasant, claustrophobic feeling, when I thought about what it meant:
We would both live, or we would both die.
In the days that followed, this realization began to obsess me. It was like voodoo, like some curse out of a fairy tale—or the fulfillment of the words she'd uttered, the night we became "blood sisters." We had never dreamed the same dreams, we'd certainly never loved the same men, but now . . . it was as if we were being punished, for failing to respect the forces that bound us together.
Part of me knew this was bullshit. Forces that bound us together! It was mental static, the product of stress, nothing more. The truth, though, was just as oppressive: the biochemical machinery would grind out its identical verdict on both of us, for all the thousands of kilometers between us, for all that we had forged separate lives in defiance of our genetic unity.
I tried to bury myself in my work. To some degree, I succeeded—if the gray stupor produced by eighteen-hour days in front of a terminal could really be considered a success.
I began to avoid Martin; his puppy-dog concern was just too much to bear. Perhaps he meant well, but I didn't have the energy to justify myself to him, over and over again. Perversely, at the very same time, I missed our arguments terribly; resisting his excessive mothering had at least made me feel strong, if only in contrast to the helplessness he seemed to expect of me.
I phoned Paula every week at first, but then gradually less and less often. We ought to have been ideal confidantes; in fact, nothing could have been less true. Our conversations were redundant; we already knew what the other was thinking, far too well. There was no sense of unburdening, just a suffocating, monotonous feeling of recognition. We took to trying to outdo each other in affecting a veneer of optimism, but it was a depressingly transparent effort. Eventually, I thought: when—if—I get the good news, I'll call her, until then, what's the point? Apparently, she came to the same conclusion.
All through childhood, we were forced together. We loved each other, I suppose, but . . . we were always in the same classes at school, bought the same clothes, given the same Christmas and birthday presents—and we were always sick at the same time, with the same ailment, for the same reason. When she left home, I was envious, and horribly lonely for a while, but then I felt a surge of joy, of liberation, because I knew that I had no real wish to follow her, and I knew that from then on, our lives could only grow further apart.
Now, it seemed that had all been an illusion. We would live or die together, and all our efforts to break the bonds had been in vain.
About four months after the start of treatment, my blood counts began to turn around. I was more terrified than ever of my hopes being dashed, and I spent all my time battling to keep myself from premature optimism. I didn't dare ring Paula; I could think of nothing worse than leading her to think that we were cured, and then turning out to have been mistaken. Even when Dr. Packard—cautiously, almost begrudgingly—admitted that things were looking up, I told myself that she might have relented from her policy of unflinching honesty and decided to offer me some palliative lies.
One morning I woke, not yet convinced that I was cured, but sick of feeling I had to drown myself in gloom for fear of being disappointed. If I wanted absolute certainty, I'd be miserable all my life; a relapse would always be possible, or a whole new virus could come along.
It was a cold, dark morning, pouring with rain outside, but as I climbed, shivering, out of bed, I felt more cheerful than I had since the whole thing had begun.
There was a message in my work station mailbox, tagged confidential . It took me thirty seconds to recall the password I needed, and all the while my shivering grew worse.
The message was from the Chief Administrator of the Libreville People's Hospital, offering his or her condolences on the death of my sister, and requesting instructions for the disposal of the body.
I don't know what I felt first. Disbelief. Guilt. Confusion. Fear. How could she have died, when I was so close to recovery? How could she have died without a word to me? How could I have let her die alone? I walked away from the terminal, and slumped against the cold brick wall.
The worst of it was, I suddenly knew why she'd stayed silent. She must have thought that I was dying, too, and that was the one thing we'd both feared most of all: dying together. In spite of everything, dying together, as if we were one.
How
could the drug have failed her, and worked for me? Had it worked for me? For a moment of sheer paranoia, I wondered if the hospital had been faking my test results, if in fact I was on the verge of death, myself. That was ludicrous, though.
Why, then, had Paula died? There was only one possible answer. She should have come home—I should have made her come home. How could I have let her stay there, in a tropical, Third World country, with her immune system weakened, living in a fiberglass hut, without proper sanitation, probably malnourished? I should have sent her the money, I should have sent her the ticket, I should have flown out there in person and dragged her back home.
Instead, I'd kept her at a distance. Afraid of us dying together, afraid of the curse of our sameness, I'd let her die alone.
I tried to cry, but something stopped me. I sat in the kitchen, sobbing dryly. I was worthless. I'd killed her with my superstition and cowardice. I had no right to be alive.
I spent the next fortnight grappling with the legal and administrative complexities of death in a foreign land. Paula's will requested cremation, but said nothing about where it was to take place, so I arranged for her body and belongings to be flown home. The service was all but deserted; our parents had died a decade before, in a car crash, and although Paula had had friends all over the world, few were able to make the trip.
Martin came, though. When he put an arm around me, I turned and whispered to him angrily, "You didn't even know her. What the hell are you doing here?" He stared at me for a moment, hurt and baffled, then walked off without a word.
I can't pretend I wasn't grateful, when Packard announced that I was cured, but my failure to rejoice out loud must have puzzled even her. I might have told her about Paula, but I didn't want to be fed cheap clichés about how irrational it was of me to feel guilty for surviving.
She was dead. I was growing stronger by the day; often sick with guilt and depression, but more often simply numb. That might easily have been the end of it.
Following the instructions in the will, I sent most of her belongings—notebooks, disks, audio and video tapes—to her agent, to be passed on to the appropriate editors and producers, to whom some of it might be of use. All that remained was clothing, a minute quantity of jewelry and cosmetics, and a handful of odds and ends. Including a small glass vial of red-and-black capsules.
I don't know what possessed me to take one of the capsules. I had half a dozen left of my own, and Packard had shrugged when I'd asked if I should finish them, and said that it couldn't do me any harm.
There was no aftertaste. Every time I'd swallowed my own, within minutes there'd been a bitter aftertaste.
I broke open a second capsule and put some of the white powder on my tongue. It was entirely without flavor. I ran and grabbed my own supply, and sampled one the same way; it tasted so vile it made my eyes water.
I tried, very hard, not to leap to any conclusions. I knew perfectly well that pharmaceuticals were often mixed with inert substances, and perhaps not necessarily the same ones all the time—but why would something bitter be used for that purpose? The taste had to come from the drug itself. The two vials bore the same manufacturer's name and logo. The same brand name. The same generic name. The same formal chemical name for the active ingredient. The same product code, down to the very last digit. Only the batch numbers were different.
The first explanation that came to mind was corruption. Although I couldn't recall the details, I was sure that I'd read about dozens of cases of officials in the health-care systems of developing countries diverting pharmaceuticals for resale on the black market. What better way to cover up such a theft than to replace the stolen product with something else—something cheap, harmless, and absolutely useless? The gelatin capsules themselves bore nothing but the manufacturer's logo, and since the company probably made at least a thousand different drugs, it would not have been too hard to find something cheaper, with the same size and coloration.
I had no idea what to do with this theory. Anonymous bureaucrats in a distant country had killed my sister, but the prospects of finding out who they were, let alone seeing them brought to justice, were infinitesimally small. Even if I'd had real, damning evidence, what was the most I could hope for? A meekly phrased protest from one diplomat to another.
I had one of Paula's capsules analyzed. It cost me a fortune, but I was already so deeply in debt that I didn't much care.
It was full of a mixture of soluble inorganic compounds. There was no trace of the substance described on the label, nor of anything else with the slightest biological activity. It wasn't a cheap substitute drug, chosen at random.
It was a placebo.
I stood with the print-out in my hand for several minutes, trying to come to terms with what it meant. Simple greed I could have understood, but there was an utterly inhuman coldness here that I couldn't bring myself to swallow. Someone must have made an honest mistake. Nobody could be so callous.
Then Packard's words came back to me. "Just look after yourself as you normally would. Don't do anything out of the ordinary."
Oh no, Doctor. Of course not, Doctor. Wouldn't want to go spoiling the experiment with any messy, extraneous, uncontrolled factors . . .
I contacted an investigative journalist, one of the best in the country. I arranged a meeting in a small cafe on the edge of town.
I drove out there—terrified, angry, triumphant—thinking I had the scoop of the decade, thinking I had dynamite, thinking I was Meryl Streep playing Karen Silkwood. I was dizzy with sweet thoughts of revenge. Heads were going to roll.
Nobody tried to run me off the road. The café was deserted, and the waiter barely listened to our orders, let alone our conversation.
The journalist was very kind. She calmly explained the facts of life.
In the aftermath of the Monte Carlo disaster, a lot of legislation had been passed to help deal with the emergency—and a lot of legislation had been repealed. As a matter of urgency, new drugs to treat the new diseases had to be developed and assessed, and the best way to ensure that was to remove the cumbersome regulations that had made clinical trials so difficult and expensive.
In the old "double-blind" trials, neither the patients nor the investigators knew who was getting the drug and who was getting a placebo; the information was kept secret by a third party (or a computer). Any improvement observed in the patients who were given the placebo could then be taken into account, and the drug's true efficacy measured.
There were two small problems with this traditional approach. Firstly, telling patients that there's only a fifty-fifty chance that they've been given a potentially life-saving drug subjects them to a lot of stress. Of course, the treatment and control groups were affected equally, but in terms of predicting what would happen when the drug was finally put out on the market, it introduced a lot of noise into the data. Which side effects were real, and which were artifacts of the patients' uncertainty?
Secondly—and more seriously—it had become increasingly difficult to find people willing to volunteer for placebo trials. When you're dying, you don't give a shit about the scientific method. You want the maximum possible chance of surviving. Untested drugs will do, if there is no known, certain cure—but why accept a further halving of the odds, to satisfy some technocrat's obsession with details?
Of course, in the good old days the medical profession could lay down the law to the unwashed masses: Take part in this double-blind trial, or crawl away and die. AIDS had changed all that, with black markets for the latest untried cures, straight from the labs to the streets, and intense politicization of the issues.
The solution to both flaws was obvious.
You lie to the patients.
No bill had been passed to explicitly declare that "triple-blind" trials were legal. If it had, people might have noticed, and made a fuss. Instead, as part of the "reforms" and "rationalization" that came in the wake of the disaster, all the laws that might have made them illegal had been removed or
watered down. At least, it looked that way—no court had yet been given the opportunity to pass judgment.
"How could any doctor do that? Lie like that? How could they justify it, even to themselves?"
She shrugged. "How did they ever justify double-blind trials? A good medical researcher has to care more about the quality of the data than about any one person's life. And if a double-blind trial is good, a triple-blind trial is better. The data is guaranteed to be better, you can see that, can't you? And the more accurately a drug can be assessed, well, perhaps in the long run, the more lives can be saved."
"Oh, crap! The placebo effect isn't that powerful. It just isn't that important! Who cares if it's not precisely taken into account? Anyway, two potential cures could still be compared, one treatment against another. That would tell you which drug would save the most lives, without any need for placebos—"
"That is done sometimes, although the more prestigious journals look down on those studies; they're less likely to be published—"
I stared at her. "How can you know all this and do nothing? The media could blow it wide open! If you let people know what's going on . . ."
She smiled thinly. "I could publicize the observation that these practices are now, theoretically, legal. Other people have done that, and it doesn't exactly make headlines. But if I printed any specific facts about an actual triple-blind trial, I'd face a half-million-dollar fine, and twenty-five years in prison, for endangering public health. Not to mention what they'd do to my publisher. All the "emergency" laws brought in to deal with the Monte Carlo leak are still active."