by Charles Bock
Still he asked, “You okay?
“You know,” he said. “It’s good to vent to a stranger. I guess.”
Moving into another right turn, a bit slower and more carefully this time, Merv concentrated on the rollers of each IV pole, guiding them in a wide arc, making sure all their wheels stayed on the linoleum. Once this had been negotiated, and it was clear Alice was not going to be giving in to his particular strangerness, that no venting would be forthcoming, he started again. “That ice cream line usually gets me in the door. Not that I’m Mr. Great Pickup Artist Bullshit Guy—back when I drank, I used to really be something. Only, it got to the point where I’d get a girl home, and I’d be thinking: You fucking pig. I can’t BELIEVE you fell for my shit. How can you be so stupid you’d let ME fuck YOU?”
Merv grimaced, shook his head at the memory. “I couldn’t wait to get away. Man hates himself that much, big mystery why I’m an alkey.”
Realizing what he’d said, Merv gauged his companion’s reaction, received nothing, Alice remaining inscrutable.
“Whaddaya think,” he said. “Another go-around?”
—
Not another go-around. Another lap was too much, but she wasn’t ready to get back to her depressing room, either. So he placed one hand on her shoulder, another on her hip, and eased her down into a metal folding chair. “Please assure me you haven’t been roaming the halls to pick up chemotherapy patients,” Alice said.
Some sort of timer must have gone off during their walk, because the overhead lights were blessedly dimmer, which furthered the hallway’s already somber feel. Sneakers were squeaking around the near corner, some nurse laughing with another. “It’s fine with me if you are,” Alice continued. “At least that’s original. It’s actually the most warped, high-concept, black screwball comedy imaginable.”
Mervyn’s hair was in need of weeding and trimming. His flannel shirt was missing a button at its collar; its opening showed a concavity. He was looking down, and his smirk had transformed, more of a wince, as if he were sucking on a sour lozenge. Checking on her from the corners of his eyes, he began revealing information whose beats were all too familiar: nonexistent blood counts, an enlarged spleen, demands from the emergency room doctor that he be admitted to a hospital right pronto.
The emergency room doctor told him the two main candidates for his illness were lymphoma and AIDS. What does anyone do when you hear this, he recounted. He recalled the numbness. Pretty much in shock when they finally admitted him to this place, putting him in a private room. Two orderlies in blue protective outfits then erected a plastic bubble around him. He watched it go up. The next three days, his father basically sat vigil at the side of Merv’s bed, staring with cloudy eyes and a hangdog face. Friends came by, and from the way they looked at Merv he understood they all assumed he was about to die, were trying to remember his face for future lyrics and songs and shit.
From around the corner, the squishy sneaker sound was again audible. Presently, Carmen said There you are, and asked if they were having a nice talk, if anyone needed some tea. Carmen laughed as if she’d delivered the funniest joke in the annals of stand-up, but also had a look on her face as if to say, I ain’t getting shit. Alice asked how Carmen’s night was going and Carmen answered that the Rangers had won, so she was fine. She then took Alice’s vital signs, and made sure Alice’s port and catheters were secure, and that there was no surrounding puffiness in her arm. Carmen let Alice know she shouldn’t stay out in the hall for too long, and reminded her to keep her mask secure, and said more pills were ready back in her room. Alice nodded and waited for her to stop yapping and leave so Merv could pick back up with his series of blood tests, his biopsy, his numbers beginning to stabilize, the suspense he’d felt while waiting to find out which probably terminal disease he was going to lace up the gloves against.
Trying to get his mind straight, Merv had taken inspiration from sports figures at press conferences who answered questions about play-off scenarios by saying: We can only focus on the game in front of us. He’d also found solace because his probability for AIDS wasn’t huge. Needles freaked him out. And he’d weaned himself off sex with guys for money back when he was a teenager, ha ha, so check that off the list. But he did generally dread having a stray puck of his slip past any woman’s metaphorical goalie, and took steps to protect himself there. Although, granted, you still had that nightmare scenario: things having gone too far to head to the drugstore, and so you roll the dice and, atom bomb, lives blown straight to shit. In his head Merv had seen a slimy condom being pushed backward off his reddened member, and he’d wondered if that had been the one that had busted or leaked. He’d remembered being drunk, begging, He hated those things, it was like fucking in a bag, he’d be careful, he promised.
He acknowledged to Alice what anyone with half a cerebral cortex already knew: a huge reason any guy got involved with playing rock was to get laid, then insisted that it wasn’t like he was the greatest cocksman of his era—and not for a second did he believe he had AIDS. Still, for three days, while he’d lain in that scratchy-ass hospital bed, he’d argued with himself. On the one hand, there were memories: the swell of a particularly full and round apple bottom uncovered by a sheet on a lazy morning; being ridden insanely hard and having a moment of eye contact and the two of them breaking out, laughing; a closed-lidded beauty in profile, the rictus of a smile forming along her pouty lips; his private stash; his most intimate carnal moments.
He didn’t mean to be gross or sexist. He didn’t want to come off to her as a pig. Probably some of those women had been promiscuous; Merv refused to believe, for even a blink, that any of them had been, you know, dirty. And still he hadn’t been able to stop himself from zeroing in on likely candidates: the girl with beautiful jet-black hair down to the middle of her back who’d had the strange deal where even in ninety-five-degree heat she’d refused to go without tights (maybe that was why she never smelled fresh); the depressed, Rubenesque, screaming tiger in the sack who’d been training to be an opera singer, and who afterward had lain in bed, smoking a jay and rambling guiltily about her boyfriend in France (two nights later she’d answered her phone and spoken French in low sexy tones; an embarrassed Merv never called again).
Some part of him still clung to the idea that getting AIDS from a blowjob was impossible. But maybe that was one more piece of bullshit musicians told each other? And if it had been AIDS, then two days after the blood tests, wouldn’t the doctors have come in and told him already?
In that hospital bed he’d regained enough energy to get squirmy, but at the same time being in bed for so long made anyone doze, so he’d be alternating between fading in and out of consciousness and feeling jittery, and starving. Now and again he’d wondered about what had happened to that goddamn art chick, if any of the guys had told her about him getting admitted and being at death’s proverbial door. Eventually, Merv had started addressing the next logical issues: how to prepare himself for the confirming news, how bad his cancer was, what kind of road lay ahead.
But could he tell Alice something?
“Whole time, I never felt like something foreign was growing inside me. It just didn’t.”
“Mmmm hmmm,” Alice said.
—
This morning, a few of his compadres had visited, started up this little jam session: Donovan with an acoustic, a flask making the rounds, popped beers frosting on the window ledge. Merv had been eyeing those beers something fierce: what better reason to get plowed than learning you have some spooky life-threatening shit? Except that if he did really have spooky life-threatening shit, he’d better make some good decisions, so maybe his head needed to be clear. The part of him in favor of being clearheaded had a slight lead on the part of him that was shouting, BLOW YOUR FUCKING BRAINS OUT. Then that warning knock that wasn’t any kind of warning. Cue the white-coat fucknuts. Marching into the room like they were on fast-forward. Making a nice straight line across the wall right opposite Merv�
�s bed. The attending took his place in front of them, goddamn marching band leader, and reported that Merv didn’t have cancer, or AIDS. He had a disease so rare the oncologist never heard of the damn thing, was forced to research it.
Blechette’s. Originated in Eastern Europe and Russia. Sourced in the inbreeding that Jews in shtetls had to do over generations, these inbred cells that over the decades kept being crossbred. About a thousand living people diagnosed, worldwide, and there were probably more except, as the doctor and Merv had learned, it was a tricky disease to identify. Some Blechette carriers could live their entire lives without knowing they had it; others would die early and nobody’d know the root cause. The telltale indicator being something you saw only if you knew to look, explained the doctor. But looking usually happened when you tested for other things, and those other things kept not showing up, and via the process of elimination, way toward the bottom of your list, you tested something called the chitotriosidase activity in blood cells—known as your chito count, which was how this Mensa society had solved this mystery.
Being afflicted with Blechette’s meant being born without a minor, cell-producing enzyme in your bone marrow. The effects started early and increased as you got older, and once they accumulated, the lack of these helper cells in a bloodstream, as well as in key organs, could be, ah, problematic. This was known as a progressively degenerating disease. By the time most patients hit their twenties, their spleens had grown to at least eight times normal size, so one side of the stomach looked fatter. Other internal organs also could bulge, making you look pregnant or deformed. Scarring on your kidneys was an issue, and manifest in lots of night trips to the bathroom. An overactive spleen reduced your platelet count, made it harder for your blood to clot, so Blechetters bruised and bled—nosebleeds, bleeding gums, heavy menstrual flow, all that. The disease also lessened the number of white blood cells, meaning anemia was a problem. Bone disease became more likely, your bones turning brittle as they aged, osteoporosis going rampant, your spinal canal thickening with calcium deposits. One common result was losing control of your legs and sexual organs. They told Merv about one hulking guy—six feet five, exercised every day—whose spinal cord disintegrated to the point where if his car was tapped from behind, just a little fender bender, dude would be in a wheelchair for the rest of his life, so if there was anything he wanted to do with his life, doctors told the man to go and do it. Without any help, the average life span for the sufferer of Blechette’s was forty-one years. Merv was twenty-eight.
“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.
