So Much for That

It wouldn’t have been appropriate to smile, but he did have to suppress one corner of his mouth from rising in a curl of recognition. He’d told Jackson in the park this afternoon that he wanted to “do the honors” and inform his in-laws about his wife’s condition, since Glynis was sure to bait her relatives into saying something nasty and then to cut them to the quick with her zinger bad news. Maybe the two of them weren’t such different people as Shep had often feared.

I know this is perverse,” said Glynis, languishing in a chair while he washed up. “But I had a wonderful time tonight. I never realized that having cancer could be so much fun.”

“She’s always thought that, you know. That The Afterlife was a ‘delusion.’”

“Beryl’s the creative one, and you’re the dullard. People get very attached to these designations. She wouldn’t want you to be capable of doing anything brave or strange.”

He turned to her from the sink. “Would you?”

“Maybe,” she considered. “But not without me.”

“Be honest,” he said. “Without – this. Would you seriously have considered dropping everything and coming along?”

“According to you, you never would have gone.”

“Moot point.” He went back to scrubbing the blackened crust from the lasagna pan.

“It isn’t moot,” she said, “whether you love me.”

He stopped. He rinsed his hands, and dried them on a towel. He knelt by her chair, and took her face in both hands. “Gnu. In the next few months, you will discover,” he promised, “how much I love you.” He kissed her, and let his lips linger until he could feel her spirit still.

He returned to the task at hand. It took a minute for the water to make it to the sink again. When it first became apparent that they had moved into their Elmsford rental “temporarily” in the adult sense of the word – i.e., as a synonym for forever – he had consoled himself by constructing a fountain at the kitchen sink. It was a whimsical contraption, with a culinary theme: the water ran from the faucet up a rubber hose that ended in a turkey baster, whose jet spray spun a round metal whisk, then cascaded down a chipped delft teacup, a bent soup ladle, an old-fashioned glass lemon juicer, a cow-shaped coffee creamer, and a wooden-handled ice-cream scoop he’d picked up at a stoop sale that must have been a hundred years old, finally landing in a tin funnel that directed the water back into the sink. Pleasingly, the water maintained roughly the same flow and pressure provided without the journey he imposed upon it, even if the hot water did drop a few degrees along the way. The mechanism was a kooky, childlike affair reminiscent of the game of Mouse Trap he’d grown up playing with Beryl. Yet his fondness for this homemade toy had taken a blow when he and Glynis came back from Puerto Escondido several years ago. In their parents’ absence, the kids had disconnected the hose. Presumably they dispensed with the nonsense over the kitchen sink whenever they had the house to themselves, and reconnected the hose when their father was due back; for the first time they’d forgotten. He didn’t tell the kids they’d hurt his feelings. Naturally he would have liked them to cherish the product of his playful side. But he couldn’t force his children to treasure in their father what he treasured about himself.

“I wonder, did you put it all together, that business about Berlin?” Glynis asked, once he had resumed battle with the pan. “While you were busy buying her a new apartment, she was planning to move all her stuff into your father’s house. Meantime, you were supposed to put him in an assisted-living facility so she could live there without the bother of his company.”

“Losing the rent-stabilized place – she’s not thinking straight, and she’s panicking.”

“You’re too kind.”

“Lucky for you.”

“God, the indignation! As if rent stabilization were a human right. And what was all that about how hard she works and how it’s ‘not her fault’ she makes no money? She made her choices. It’s called making your bed. So you lie in it.”

“We’re better off than she is,” he said, adding, “monetarily anyway. She’s jealous.”

“But she holds you in contempt.”

“It makes her feel better. Let her.”

“I mean, the nerve! A hundred grand! Which would just be the beginning, since she wouldn’t have made the mortgage payments, either. I warned you a long time ago that if you kept giving in on the smaller amounts, it would only get worse.”

“I didn’t mind helping her out now and again.” A doubt crossed his mind over whether in different circumstances he might have been amenable to his sister’s proposition after all.

“Did you get a load of that ‘millions and millions’ crack? Where’d she get that idea?”

“Beryl’s like a lot of people who’ve always been hard up. They think there are people like them, and then everyone else is unimaginably wealthy. Some money is the same as infinite money. She doesn’t have kids, and she doesn’t know what things cost. Zach’s tuition. Car insurance in New York. Taxes—”

“You can bet she doesn’t pay any. And it’s people like your sister who think people like us should pay even more.”

“Well, I hate to sound like Jackson. But Beryl is completely unaware that her life is subsidized. That her trash is collected, that she can go for a walk in a park, that emergency rooms really will treat her without insurance if she’s bleeding – it’s all paid for by someone else. I’m dead certain that thought never enters her head.”

“To the contrary,” Glynis agreed. “She doesn’t feel like a beneficiary, but like a victim. She has a chip on her shoulder the size of a redwood.”

That the same might be said of Glynis Shep kept to himself.

“My favorite part of the evening wasn’t even your announcement,” she continued. “It was the crocodile tears afterward. All that histrionic solicitation and despair. So fake! Just like all that overdone fawning over the fish slice. She’s a terrible actress. She was mostly aggrieved that from now on she can’t put her hand in your cookie jar.”

“Well, I guess the expectation is that in the face of serious illness, all the – friction – between people, like you and Beryl—”

“Friction?” Glynis laughed, and the sound was wonderful. “She detests me!”

“Okay, but even that – it’s supposed to go away. She can’t feel that way about you anymore, and then she still does and it’s awkward.”

“There’s something delicious about it. I can’t explain it, but I loved watching her so obviously play pretend. I get the feeling there are just a few bits and pieces of this mesothelioma thing that I’m going to enjoy.”

As he lovingly dried the fish slice, the fact that Glynis roused herself to get up and wrap her arms around him from behind was strangely moving. She was so depleted that small gestures of affection must have cost her an extraordinary outlay of energy.

“Oh, and did you notice?” Glynis mumbled into his shirt, laughing again. “She still remembered to take the chocolates.”

chapter six

The timing of the Before Picture dinner up at Shep’s was even worse than Jackson had foreseen. The night before, the Saran Wrap that Flicka wrapped around her eyes to seal in the Vaseline had come off while she slept – he should never have bought that off-brand surgical tape – so that morning her eyes had been flaming. While he was out for a few hours, she apparently got – well, “irritable” was an understatement.

For while Carol was always urging him to avoid subjecting Flicka to “stress,” by far and away the biggest source of stress for their elder daughter was the very condition that made her so sensitive to it. She didn’t mind her father’s familiar mouthing off about isn’t it a coincidence how every sanctimonious new “green” law legislators proposed, like a tax on plastic bags, a tax on airline carbon emissions, just happened to make the State more money. She did mind waking up with puffy red eyes halfway to conjunctivitis before breakfast. She did mind not being able to talk right when she had plenty to say. She did mind drooling all the time, and sweating all the time; even if the kids at school had been lectured on not making fun, she might have preferred a little regular-kid teasing to the outsized politeness and looking-the-other-way she put up with instead. She got sick of having to pour that water-sugar-and-salt solution into her g-tube every hour and a half, which produced none of the gasping satisfaction she witnessed in her sister after a deep, thirsty quaff of Coke. She got tired of wearing that big black “airway clearance system” vest for fifteen minutes every morning and night, as if bracketing her sleep with two rounds of boxing.

Flicka might have been grateful that the Vest now spared her parents’ uncomfortably intimate double-fisted pounding on her back while astraddle her buttocks. She might have been grateful, too, that they’d given up on the chest drainage sessions that had tyrannized her childhood: the tube worked unpleasantly down her nose, the pump’s sickening gurgle and slurp, the grotesque accumulation of mucus in the waste container; it had always amazed Jackson how much thick, viscous gunk could derive from those two tiny lungs, and though Carol had always dispensed with the effluent with her usual no-nonsense officiousness, he could not have been the only one to have found the gloppy, stringy substance nauseating. But if he himself was grateful that dislodging her congestion had grown less revolting, for Flicka gratitude was a foreign sensation. She suffered so many other annoyances that she simply transferred her vexation to something else: chronic constipation from all those meds, the humiliating enemas.

Moreover, the biggest trigger of a dysautonomic crisis was surely sheer dread that, for fuck’s sake, she was about to have another dysautonomic crisis.

The signs would have been falling into place in his absence, while Carol was making a German chocolate cake to bring to tonight’s feast at the Knackers’. He knew the drill. Flicka had endured more medical indignity by sixteen than most folks abided over a lifetime, and her true nature was stoic. Sure, she grumbled plenty, but if she ever got outright whiny, that was a red flag; “change in personality” and “emotional lability” were textbook indicators of a crisis. The thing was, most kids with Riley-Day – an older tag for familial dysautonomia that sounded like a pop duo who sang perky numbers on Christian radio – would “whine” that their sister was hogging the family computer. But Flicka had an existential streak a mile wide, and her personality never altered as much as all that. Her version of “lability” was a lot harder to take. She would “whine” about the fact that she hated her life and hated her body; about how she had nothing to look forward to besides submitting to more bouts in the hospital, ending up in a wheelchair, and having her whole cornucopia of symptoms – the wild blood pressure fluctuation, the chronic congestion, the lousy balance, the cornea infections, the seizures – get worse. Flopping and perspiring about the kitchen, she’d “whine” that she’d rather be dead. That was rough for any parent to listen to, since the declaration couldn’t be put down to regulation teenage histrionics. She meant it. This wasn’t a kid who “didn’t understand the concept of death,” either – the likes of whom Jackson had never met anyway. Like most children, Flicka understood perfectly well what death was, and on days like this she thought it sounded wonderful.

Sure enough, he could hear the girl’s nasal screech from the back of the house while he was still out on the stoop. (“No, I didn’t wear the Vest, I hate it, I hate everything, all this stuff about how great it is at least to be alive, I don’t know what you see in it!” Brief lulls were doubtless filled in with Carol’s ritual assurance that she shouldn’t talk like that, that “life was a precious gift,” sentimental homilies guaranteed only to further their daughter’s rage.) He was still feeling afloat and unfocused himself; he’d been warned not to drive, and had ignored the injunction. The sedative seemed to have brought on an after-high, for when he’d filled the tank over on Fourth Avenue his chatter with the attendant had been manic even by his own standards.

“Why don’t you just let me cut out? It’s not worth it!” Flicka wailed from the kitchen.

Walking in on this foofaraw confirmed his conviction that, Christ, he’d earned doing one thing for himself, hadn’t he? Just one?

“I don’t want your stupid scrambled eggs!” Flicka was wheezing when her father entered the room. “I don’t want to spend all Saturday afternoon with my speech therapist, and occupational therapist, and physical therapist. I’m going to die anyway, so just let me watch TV! What does it matter?”

Carol had grabbed the girl’s hair and was squeezing more Artificial Tears in her eyes. (One of the first signs of FD, that the baby couldn’t cry, was something of a sick joke; any infant with a future like this had every reason to weep.) As Flicka was rasping, “Just leave me alone! Let me fall apart in peace!” she started to hyperventilate.

Granted, it wasn’t always easy to distinguish the symptoms of FD from the side effects of the meds; nausea, dizziness, tinnitus, canker sores, backaches, headaches, fatigue, flatulence, rashes, and shortness of breath came with both territories. But the nature of this episode grew clearer when in the midst of her gasping Flicka started to retch. The dry heaving was excruciating to watch, somehow more so than before the fundoplication, when she’d have spewed what little she’d ingested of Carol’s unwanted plate of scrambled eggs in a six-foot projectile plume. At least proper vomiting had seemed to offer relief. The retching was ceaseless and unavailing, as if an alien embryo in her guts were clawing its way out.

“It’s a crisis,” Carol told her husband grimly. Most wives would make such a statement in the spirit of hyperbolic melodrama; for Carol, the verdict was coolly clinical. “Thank God you’re back. Hold her.”

Jackson clutched his tiny writhing daughter to his chest. After wrestling with the button and zipper with some difficulty from behind, Carol pulled Flicka’s jeans down, hastily coated her own middle finger with Vaseline, and slipped a tiny tablet the color of marshmallow peanuts as far as she could up her daughter’s ass. Without taking a reading that they didn’t have time for, it was always tricky to discern whether Flicka’s blood pressure was soaring or plummeting, but Carol made an educated guess at low – the girl’s skin was clammy, pale, and cold – and administered a pink tablet of ProAmatine in the same rude fashion. Flicka’s whole digestive system would already have shut down, and even meds administered through her g-tube wouldn’t absorb.

“Now, remember—” said Carol.

“Yeah, yeah, I know,” Jackson interrupted. “We gotta keep her upright for the next three hours.” Carol never gave him any credit. He knew perfectly well that lying down after ProAmatine could send Flicka’s blood pressure from knee-high to through the roof.

All this time, Heather had been mooning on the sidelines looking envious, and envy in these circumstances made Jackson worry that she was far dumber than she tested.

For good measure, Carol inserted yet another tablet of diazepam, and within a few minutes the convulsive retches in his arms spasmed farther apart. Fortunately, Carol had crammed Flicka full of Valium fast enough to avert a full-blown crisis – the human equivalent of a hard-drive crash – which would have sent them straight to New York Methodist. However, the rescue did cost the cake, which was now filling the room with the sharp, not altogether unpleasant smell of charred chocolate.

I apologize for the store-bought cake,” Carol said at the door. “We had a mishap with the home-baked one.”

Carol never used Flicka as an excuse, a discipline Jackson admired. Nor would either of them mention how much they’d be out of pocket for the sitter. Flicka having been volatile, they’d called Wendy Porter, their usual registered nurse, who was FD au courant. Hell, they’d have cancelled altogether if it weren’t for Flicka. “I like Glynis,” she’d stressed while they hovered, making sure that she didn’t lie down. “She never treats me like an idiot. She asks me about my cell phone collection, and not only about my stupid FD. She can be, like, sort of wicked, too, which I like tons better than all that goo-goo sweetness I get from those fawning therapists. And now she’s sick. Sicker than I am, even if that seems totally impossible. She’ll be looking forward to tonight, and if you suddenly don’t show up she’ll be crushed. So if you stay home on my account, I swear I’ll swallow some milk the wrong way and give myself pneumonia.” Blackmail, but it had worked; Flick didn’t make empty threats.

Jackson bustled into the kitchen with an overkill of booze – two bottles of wine, two more of decent champagne – meant to impose festivity on an occasion that didn’t easily pass for celebration. Marking the end of an era, this was the last gathering of their traditionally garrulous, fractious foursome that wouldn’t be undermined by dietary restrictions, fatigue, pain, or disappointing blood test results, and the very end of any era was really the beginning of the next one.

Shep had taken the same obfuscating approach to the food. Enough appetizers crowded the table on their enclosed back porch to feed a party of twenty-five: hummus, grilled chili-shrimp on skewers, out-of-season asparagus, and scallops wrapped in bacon; the dim sum, which didn’t quite fit in, had clearly been provided in order to employ Glynis’s forged silver chopsticks. The windows were lined with tea lights. Glynis came downstairs draped in a floor-length black velvet number, which matched Carol’s glittery jet cocktail dress; between the candlelight and the women’s attire, the atmosphere on the porch was that of a séance or satanic ritual. When Jackson wrapped their hostess in a fervent embrace, his fingers sank alarmingly into the velvet; that was a lot of fabric and very little Glynis underneath. Her shoulder blades were sharp as chicken wings. That was no size in which to undergo major surgery, and now he got it about all that food.

“You look fantastic!” Jackson cried. She said thanks with girlish shyness, but he had lied. It was the first of many lies to come, thus another reminder that tonight marked more beginning than finale. Glynis had applied more makeup than usual; the blush and rich red lipstick were unconvincing. Aging anxiety was already etched into her face. Nevertheless, she was a tall, striking woman, and this was the best she was liable to look for a while. That it could well be the best she would look again, ever, was a thought he tried to block.

They settled into caned armchairs while Shep fetched champagne flutes. In the olden days, meaning six weeks ago, Glynis would have hung back on the sidelines conversationally. Wised up to the fact that sparse comment carried greater weight than garrulity, she was the sort who let everyone else argue forever over details, and then made the one sweeping pronouncement that brought the fracas to a close. But now her bearing was regal, as if she were holding court, Queen for a Day. In turn, he and Carol were solicitous, careful to stop talking as soon as she opened her mouth. They let her lay out the procedure scheduled for Monday morning step by step, though they’d already got the whole lowdown from Shep. If Glynis was the center of attention tonight, it was the kind of attention that anyone of sound mind might gladly have skipped.

“At least I got contacting Glynis’s family over with,” said Shep. “Telling her mother was a trip.”

“She’s such a prima donna,” said Glynis. “I could hear her bawling through the receiver from the other side of the kitchen. I knew she’d hijack my drama into her drama. You’d think she was the one who had cancer. She even managed to make me feel bad that I was making her feel bad, if you can believe that.”

“Isn’t it at least a relief,” Carol said tentatively, “that she cares?”

“She cares about herself,” said Glynis. “She’ll milk this for all it’s worth with her book club – you know, the terrible wrongness of a child falling ill before the parent, et cetera, et cetera. Meanwhile, my sisters are saying all the right things, vowing to visit, but they’re mostly glad it’s not them. Maybe I’ll luck out and Ruth will send me some scented candle she got on a free offer from MasterCard.”

There was a harshness about Glynis in the best of times, and Jackson wondered what reaction her family might have had that would have pleased her more.

“And how was telling your kids?” asked Carol.

Glynis visibly flinched.

“More difficult,” Shep intervened gently. “Amelia cried. Zach didn’t, and I wish he had. I think he took it harder. I hadn’t imagined it was possible for that kid to get more closed up, more burrowed into his room. I’m afraid it’s possible. He just – shut down. Didn’t even ask any questions.”

“He already knew,” said Glynis. “At least that something awful was afoot. That I slept too much and my eyes were often red. That we whispered too much, and stopped talking when he walked in.”

“I bet he thought you were getting a divorce,” said Carol.

“No, I doubt that,” said Glynis, taking her husband’s hand and meeting his eyes. “Shepherd has been very tender. Very, obviously tender.”

“Well, I hope a little affection isn’t so rare that it’s what set off Zach’s alarm bells!” said Shep, looking grateful but abashed. “You know, this room thing the kid’s got going … Nanako, our new receptionist, told me about these Japanese kids who never leave their rooms at all. What are they called, something like haikumori? The parents leave meals outside the door, collect the laundry, sometimes empty bedpans. The kids won’t talk, and never cross their thresholds. Mostly hole up with their computers. It’s a big phenom there. You should check it out, Jacks, right up your alley. A whole subculture of kids who say, fuck you, I’m not interested in your shit, leave me alone. We’re not talking dysfunctional eight-year-olds, either; lot of these opt-outs are in their twenties. Nanako thought it was a reaction to Japan’s hothouse competition. Rather than risk losing, they refuse to play. The indoor version of The Afterlife – without the airfare.”

In widening the discussion to Japan, Shep implied that it was now all right to talk about something else besides disease. Even Glynis seemed relieved.

“Those hiki-kimchi, or whatever,” said Jackson. “Precocious moochery is what that is. You gotta give these guys credit for figuring out so young that when you refuse to take care of yourself, someone else will come along and roll your sushi for you.”

“But it’s hardly an enviable life,” said Carol. “Not what any of us would want for Zach.”

His wife’s persistent sincerity sometimes grew trying. “Hey, Shep, I been thinking about that problem of my titles not being sufficiently flattering to my would-be public.” Jackson plunged a triangle of pita bread into the hummus with the pretense of an appetite. “So check this out: Just Because You’re a Quailing, Lily-Livered Twit Who Folks Smarter and Gutsier Than You Are Bleeding White Doesn’t Mean You’re Not Still a Nice Person.”

It went over well.

“Speaking of being bled white,” said Glynis, “Beryl came over the other night. Can you believe she expected us to put up the entire down payment on a Manhattan apartment?”

“Why not throw in a yacht while you’re at it?” said Jackson. “Christ, that woman is Mega-Mooch. Ever notice how these arty bohemian types think we owe them a living? As if we’re all supposed to feel so grateful that they’re creating meaning and beauty for us poor uncultured Neanderthals. Meantime, they’re always shaking a tin can in our faces – for another government grant, or a Midtown penthouse courtesy of Meany Capitalist Older Brother.” He and Beryl had met once: oil and water. She thought he was a heartless right-wing kook, and he thought she was a soft-headed liberal pill. Whenever Shep’s sister came up in conversation, Jackson couldn’t contain himself.