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.”
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