So Much for That

“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 (#ulink_d392e91a-0e52-509c-b522-013d085a198f)

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.