Authors: Charles Bock
“But fret not,” Merv assured (as Alice stared in horror). The FDA approved a medicine, he told her, just under a year ago. Researchers culled it from the ovaries of striped Chinese hamsters. “Who even knew there were Chinese hamsters, let alone striped ones?” But those furry little bitches got drained into a two-thousand-liter bioreactor. They got synthesized, or bioreacted, some shit that Merv couldn’t follow. Something happened to the ovaries in the bioreactor, and afterward this new stuff got filtered into this harvest tank, where it was fermented, or synthesized, some shit. What they ended up with was this pure, rare protein, and it was this stuff what got shaped into the medicine, this stuff what acted as a replacement for the enzyme. Taken long enough, this wondrous wonder drug didn’t cure your Blechette’s, per se, but it started fixing the scar tissue on kidneys, it stopped the growth of internal organs, even built up bones, some. Biggest thing, patients didn’t get any worse. You got to live your life.
That’s why Merv was still in hospital: staying overnight, being tested to find out whether his chito activity had grown to where he needed the drug.
So his conundrum was this: each intravenous treatment cost fifteen thousand dollars.
Alice gasped.
“Yup. Third most expensive drug on the planet.”
All signs pointed to Merv going on it. His admittance chito numbers had been high enough. He was supposed to take some more advanced tests tomorrow to confirm.
Merv explained to Alice that patients took the drug intravenously every two weeks. So if he started treatment, he’d be responsible for fifteen thousand dollars a pop, every two weeks, basically for the rest of his life. Meaning he’d shatter the cap for his shitty musicians’ union insurance plan in a heartbeat, and he didn’t come close to making enough money to get on one of the higher-end plans—hell, he barely made enough each year to pay union dues.
Doctors said the drug company had a program to provide for patients who couldn’t afford the drug, but doing that meant Merv dropping his policy and being uninsured.
Doctors also told him about the lady with the disease who’d had five hip replacement surgeries by the time she hit forty, so being uninsured was insanity.
But could he really give up being a musician and go be a drone with a real job, be some secretary in a cubicle or some shit?
He answered his own question: “Fuck that.”
He shrugged. “I mean, what can they possibly be doing so that shit costs fifteen grand? That’s a five-hundred-dollar-a-day heroin habit.”
“You should be overjoyed.”
“Five hundred a
day
.”
One side of his mouth turned up, the crookedness of his smirk got more pronounced. “I guess that’s one more scary problem about being sick. You’re dependent on all these fuckers but for not one second do you believe they have your best interests at heart.”
She couldn’t even begin to tell him, couldn’t imagine where to start. “What’s money for, if not to pay for your health?”
“Know what? My old man went to the library. Turns out, the FDA developed the drug.
Public tax money
found that cure. Something called an orphan drug. Means the government has all kinds of rules on how to find cures for rare diseases. But some horseshit biotech company buys the patent. Turns out, the president of the company’s one of those FDA researchers. The company tells
The
Wall Street Journal
that promising a ninety percent markup for the drug price is the only way they could raise enough capital to bring this shit to market—the drug has to be so expensive that it becomes profitable to the investors.”
“Believe me,” Alice said. “Western medicine is more than welcome to kiss my ass.”
“And since we lucky lemmings need them Chinese hamsters to live, the insurance companies have no choice. No biggie though. Just raise premiums to cover the cost. Everyone gets paid, the medical-industrial complex marches onward.”
“Maybe you should take a breath—”
He ignored her: “And it’s not like I can ask my parents to float the insurance. I’ve put them through so much already—”
“I’m sorry for you.” Alice cut him off, her tone polite, but forceful enough, snapping him back into the real world.
She waited until his body language softened.
“I’m still not sure you have the right to be mad,” she said.
His eyes narrowed.
“This is saving your life? The processed hamster ovaries work? There’s an organizational structure, however unjust, that’s for paying for this. For a while anyway?”
He shrugged his shoulders.
“Maybe you could be thankful?”
“Right.”
“Instead you want to refuse.”
“I know,” his voice acquiescent. “Every drug company’s this way.”
“So you can keep doing background tracking for scale? So hungover fools at the Sidewalk Cafe can hear your especially
ripping
version of ‘Take the A Train’?”
His brow hardened. His eyes now dark pebbles.
“Believe me,” Alice said. “I intimately understand clinging to every scrap of your creative life.”
She waited for him to respond in some way, acknowledge her point. Though this response did not come, Alice proceeded, however gently: “Why can’t you be like ninety-nine percent of the creative people in Manhattan who have to make their art in their spare time?” Then her patience was at an end. “You’re being a spoiled child.”
“Right—”
“Closing your eyes and having a tantrum.”
“Here we go.”
“Shouting:
I don’t want to grow up.
”
“Woman’s idea of being a man. Married. Boring-ass nine to five. Crying infant sucking every spare dime. Balls safe in wifey’s purse.”
Alice absorbed the blow. “It’s a difficult thing to give your body to doctors,” she admitted. “I know when I’m weak and ill and in pain, I become complicit. I almost feel like I’m my baby, looking up at me to take care of her. I
do
understand what it’s like to be that helpless—”
A shrug of the shoulders. He kept staring to the right of her ear.
“I’m more than cogent enough to watch what the doctors and nurses do to me. I listen to their explanations. Believe me, honeysuckle, I’m not happy about…about
this
.” She motioned with her hands. “Part of me that feels as if their medical work is separate—I’m watching a television show where doctors discuss my status.”
“Right, it’s so goddamn infantilizing.”
“And it doesn’t seem like I’m actually
doing
anything
.
I’m lying there, passive, letting them pump me with poisons. All I can do is hope that a donor match comes through. So I can go through some other horrible procedure that
might
save my life.
“I don’t know you at all,” Alice said. She felt herself tearing up. “But you’re making me very angry at you.”
He flinched.
Running a hand through his hair, sweeping his falling bangs back. Merv avoided eye contact, instead looking at the pamphlets on the wall behind her.
That stare of hers, still boring in.
“I sat in that forsaken bed for more than a month,” Alice continued, “and believe me, the day’s empty spaces, they grow until they become spectral.
Spectral
. I know all about silence expanding until you’re sure it will never end. Every beep and knock swallowed, and you want to scream,
No, fuck it all, just fuck it
—”
Her eyes were unblinking, shining and gray and blue, not flinching.
“I’d trade with you in a heartbeat,” she said.
Merv gathered the courage and looked at her. Her pert nose sniffed at its bridge. Her nostrils flared.
“Before Buddha was Buddha,” Alice said, sniffing again, “he walked out on his wife and their baby. Being Buddha meant he had to be free, and freedom meant he could not have any commitments.” She spoke through tears, her words blubbery, progressively more difficult to understand. “I’ve always wondered: What about the wife he left? What was she supposed to do?”
Alice’s voice cracked. “It’s disrespectful to challenge a teacher by asking, is what I’ve found. They go mystical and tell you the personal has to be sacrificed for the universal good. But for the good of the wife, they give no answer.”
“There’s no answer,” Merv said.
“The most inclusive peaceful loving religion there’s ever been, understand? So I hear you that you can’t trust medicine. But it’s not like the other choices are any better.”
“Any God you want to pick,” Merv said. “He’s got to be one throbbing asshole.” He seemed to mull this. “Or maybe it’s that whole pay-attention-to-the-words-and-not-the-messenger deal? You know, like my high school gym teacher always said:
It ain’t queer if you get paid for it.
”
“Horrible.”
Alice’s eyes were delighted. Her protective paper mask stretched, extending with her smile.
Some night nurse made her way down the hall, vanished.
“I’ve been telling myself
People get sick every day,
” Alice said. “But then I think:
They aren’t me.
” She pantomimed a curtsy, as if to say,
See, I can feel sorry for myself, too.
“None of the choices are worth a damn.” His hand, pale, callused, moved atop her thin, gloved one. He asked, “Where does that leave you?”
“Oh.” She waved him off. “What does anyone have? The people you love. The love you feel for others.”
“Passion,” Merv answered. “Living in the moment.”
“I try to tell myself, I am my decency. In any given moment, I can embody my best humanity.” She fingered the edge of her mask near her nose. “Sounds grand, anyway.”
Awaiting a response that she assumed would shred her, half-wincing in anticipation, she was aware now of his eyes, this man examining her with such intensity it was as if he were looking inside of her, searching—but for what she did not know. It seemed there was some wildness dawning inside him. It made her self-conscious. She worried she might blush, that this man was just unhinged enough to lean in and kiss her; she was certain he was about to try.
But no. He was a counselor, accompanied by an imagined acoustic guitar, crooning to campers gathered around a crackling fire:
It’s too late to complain
Bad, bad timing
Ugly saying
FLAT-OUT FUCKED
FLAT-OUT FUCKED
FLAT-OUT FUCKED
—
When Alice arrived back at her room, she still felt out of whack, unnerved by the scratch in his voice as it hit its pained, wailing apex. In the same way that his screaming had revealed the limits of his singing range, their conversation seemed to expose the outer limits of their respective sanities. Alice was sure this man was deranged. A part of her did not particularly mind, and even felt exhilarated by him. But she also felt relieved to be finished with this challenge, like a cat whose hair had stood along its back for too long.
Her room was dark, but she could make out the outline of her bed, propped up at a ninety-degree angle, her grandmother’s quilt turned back, the exposed mess of tangled sheets. Alongside, the rolling tray was agog with plastic pitchers, half-filled cups of water, plastic hospital dish covers, and a cardboard take-out soup container. Scant light filtered in through the windows, while the furthest edges of a more potent source emanated from the high far corner, the flashing colors of the soundless newscast visible above the separating wall. In the room’s stillness, she felt odd, almost contemplative, but also anxious. She wanted to call to see how things went with the child, say good night to Oliver, but knew better than to wake the baby.
It only took a few seconds before she realized something smelled foul. Worse even than the dry ice at home.
Mrs. Woo was moaning, and through her tube, her sounds were garbled, but obvious in their pain. Alice pushed her IV pole as quickly as she could, reaching the nurse bell. “Something’s wrong. The other woman in here—please come. She needs help.” Her hands felt clumsy, her legs heavy, but she managed her IV unit around the bed, toward the partition. Mrs. Woo sensed her presence. Before Alice could say anything, lights were hit; an orderly and a nurse were rushing around her.
“Damn.” The orderly took a whiff, the pair now disappearing behind the partition. Alice heard rustling, the nurse telling Mrs. Woo they were going to take a look, instructing the orderly in turning the old woman on her side, telling Mrs. Woo not to worry, she was going to make sure the breathing tube was clear and remained in place. “We’re going to take a look,” the nurse said. “It’s okay, dearie. You just had an accident. It happens to the best of us.”
—
Two nursing assistants, both massively overweight, would soon arrive to clean and strip the sheets. The taller would say, “Always at night they do this.” The nurse would promise Mrs. Woo that she’d check back with her and would order the assistants to stay with her, make sure that tube stayed clear. The nurse would take Mrs. Woo’s hand for a moment and assure: “You’ll be okay,” and when she left, the assistants would grouse and bump and knock about, making jokes as they cleaned. Alice would wish she had made eye contact with Mrs. Woo, and finally she would not be able to take any more, and with what strength she had, Alice would say, “She’s sick. Can’t you respect that?”
And soon enough the eyes of the medical establishment would turn their attention onto Alice, for now it was
her
blood levels that needed to be checked, her vital statistics that again had to be measured, her IV bags rehung with new antibiotics, platelets, and steroids, her pills confirmed as having been ingested, and more than one of those catheters coming due for a change. Another urine sample was needed, and the morning nurse would have to rouse her again in six hours for another one after that, every six hours was the rule—although, before that happened, an assistant would come in, measure the exiting urine levels, change the toilet pans.