The Life You Longed For (23 page)

“Effective management of pain,” Markind had written, “involves treatment of psychological factors that aggravate physiological disturbances.” Grace glanced up at the word “aggravate,” a tiny alarm sounding in her chest.

“Child's mother and/or primary caregivers should be observed at length for a detailed assessment of familial interactions that aggravate child's perception of pain.”
Aggravate.
The word calcified inside her. She continued to read: A Swedish study found that patients' perceptions of pain increased threefold when in the presence of their spouses. The pain itself, measured by changes in heart rate, skin conductivity, and rate of respiration didn't escalate; what escalated was the patient's
feeling
that he was in more pain. Perhaps, Markind proposed, in the presence of those who responded toward this ‘'imagined” pain with greater affection and concern, the patient subconsciously dramatized his symptoms. Couldn't a similar effect occur in the pediatric population?

Grace closed her eyes and exhaled a breath she hadn't known she was holding. The idea that she could have done anything—
anything—
that might have increased Jack's pain sliced through her with so much force she thought she might be sick. How—
how—
could
anyone
who had dealt with a child in pain even consider that a parent's presence would make things worse? The entire structure of pediatric hospitals had been altered in the last fifty years to make it easier for parents to stay with their children.

She glanced again at the last page of the article which featured a black-and-white picture of Markind in his office, the wall behind him crowded with photographs of smiling children. “A small sampling of the patients Dr. Markind has helped,” the caption said. Grace studied his photo: a youngish man with sad eyes despite the wide smile on his face. As she had with John Bartholomew, Grace wondered if Eric Markind had kids and if any of them had ever been as sick as Jack and if it mattered—and if it should. But how could it not?

She thought of that Salem judge who had lost eleven children, of Charles Darwin and of how it was
after
the death of his ten-year-old daughter, Anna, that he became obsessed with understanding what survived and what didn't.
The Origin of the Species
. The whole theory of evolution.

She stared bleakly out the bay window. Galileo, abandoned by his mother at birth, had spent his life struggling to understand the force by which two objects, separated by empty space, could continue to exert force upon one another. Maybe, Grace thought now, every important discovery, everything important that happened in the history of the world, stemmed from loss. The Rockefeller Institute was founded when the first grandson of J. D. Rockefeller died of polio at age three. F. Scott Fitzgerald named the death of his siblings, both of whom died before he was even born, as the greatest influences on his writing. Mary Shelley wrote
Frankenstein
after she lost her baby. It made sense. Maybe the dark energy that supposedly comprised 90 percent of the universe was nothing more than grief, the world pulling itself apart at exponentially faster rates.

She glanced again at Markind's photo, then sat back, recalling a story she'd heard on the news about jurors in a murder trial who became traumatized after being forced to watch a video depicting the victim's rape and torture. The jurors were sequestered for the duration of the trial, unable to discuss with anyone what they had seen. Grace wondered if it was like this for certain doctors who were forced in their own way to watch, day after day, children suffer. And if it was a child like Jack where the disease kept shifting and changing and incrementally getting worse, it might seem that there would be no end to the suffering, and perhaps the doctor became traumatized too. How do you not want to turn away, and how do you not hate the people, parents like her, who day after day force you to watch, demand that you account for this suffering, will not let you go?

“Even now I wrap what's most fragile in the long gaze of science.”
The phrase wedged itself into the space between her breaths. It hurt to inhale.
The long gaze of science,
she repeated, trying to calm herself.
The long gaze of science.
And then, suddenly, she got it and was pushing back her chair and moving through the unlit hallway to her father's study at the back of the house.
The long gaze of science.

Of course.

She turned on the green banker's lamp on her father's desk, illuminating an airline flight map of the U.S. push-pinned to the wall overhead, then turned on the computer. As soon as she found theM.A.M.A. site, she began charting on a pad of legal paper the state where each woman had been accused. Her hands were still trembling from the phone call to Noah, her handwriting shaky, as if she were trying to write while in a car. A disproportionate number of accusations in Florida, California, Texas, Illinois, Georgia, and Pennsylvania. Grace sat forward, drumming her fingernails on the desk, heart pounding. How could she have missed this?

It was so basic. John Snow, father of epidemiology, had ended a two-year scourge of cholera in London by drawing a detailed “spotmap” of where the cases occurred. The majority were from a neighborhood located between two main thoroughfares: Broad and Cambridge streets. Further investigation, a more refined map, and Snow was able to determine that those who pumped their water from the Broad Street water pump came down with the plague, while those who got their water from the Cambridge pump did not. The Broad Street pump was closed; new cases of cholera disappeared.

Grace smiled, remembering: Dr. Kuhn's Science of Medical Inquiry class. Tuesdays and Thursdays, three to five. A wood-paneled classroom, rust-colored autumn light spilling through the windows. Snow's premise, which became the foundation of epidemiology, had been drummed into first-year graduate students ad nauseam
. Diseases do not exist in isolation, but result from a unique intersection of time, place, and people.
Expanding suburbs in the northeastern part of the United States in the late '70s significantly encroached upon land populated by white deer; hence, Lyme disease. Building the Aswan High Dam in Egypt in the 1960s expanded the habitat for snails hosting the flatworm
Schistosoma mansoni,
and fifteen years later the proportion of people in the Nile Valley with schistosomiasis had increased exponentially.

On the legal pad, Grace wrote the equation:
Late twentieth cent. + large Amer. cities + ? = msbp.
She stared at the list of states that she'd jotted down. The obvious connection was that some of largest cities—she scrawled these in the margin: New York, L.A., Chicago, Dallas, Philadelphia, Atlanta—were located in these states. And this would naturally translate into larger numbers of “troubled” families, single parents living in poverty with histories of substance abuse, violence, unemployment, and a lack of education, which typically equaled increased risk and prevalence of child abuse. She tapped her pencil against her notepad. The problem was that Munchausen's didn't occur in typical high-risk families, but in white, middle-class families with two parents, one or both of whom had a college education.
A medical background
. She stood, paced, sat again at the computer, feeling as if she were standing on the edge of some huge precipice and all she needed were the right words to pull her back. Atop the margin of her paper she scrawled
Why????
, followed by a series of dark question marks. She pictured Dr. Kuhn with her long skirts and lace-up flat boots and wide pretty face. Her thick German accent.
“It is not only important what disease a patient has but which patient the disease has.”—
William Osler, the founder of modern scientific, researchbased medicine. The words moved across her mind in dark formations like lines of migrating birds. She stood again, walked in slow circles, hands on her hips, head bowed. She returned to the computer, clicked to another site. She typed in keywords, skimmed articles, revised her search, narrowed it, refined her question, read yet more articles.
“To find the right answer, one must ask the right question.”

“
I
owe you an apology.” Jenn tilted her head back and squinted toward the tops of the pines. Light filtered through the trees and shimmered over the glossy surface of her leather jacket. She had driven over after her shift at the hospital, armed with the new
Sports Illustrated
for Max, paper dolls for Erin, a bag of M&M's for Grace.

Grace walked just ahead of her, sidestepping puddles. It had rained earlier. Water plunked softly from branches onto the dirt. Nearby a bird twittered, and she glanced up.
The farther two quarks are pulled away from each other, the more fiercely they are attracted.
The sky was empty. She inhaled sharply, the cold air like glass in her lungs.

“I didn't realize how jaded I'd become,” Jenn was saying. “I can't believe how awful I was to you when you told me about this.”

“You weren't awful.” Grace glanced over her shoulder at her friend. “You were honest.” Jenn was wearing a bright blue beret, and she looked beautiful despite her swollen, red-rimmed eyes. “I'm sorry,” she had sobbed helplessly from behind wads of crumpled Kleenex when Grace's mother opened the door to her. “Stephen told me. I can't stop crying. I can't believe I even made it here…”

“You're just being nice,” Jenn told Grace now, “but the truth is that
one
inconsistency in a parent's story or the slightest question about how a kid got hurt, and I immediately assume abuse.” They walked side by side again, the path dry, curving uphill and away from the lake. Pockets of white snow surrounded the bases of trees. “Most of the time my instincts are probably right—God, I hope they are—but still.” Jenn stopped and cupped her hands to her mouth, blowing into them for warmth. “I had a kid a couple of months ago with a dislocated shoulder,” she said after a moment. “He'd been pitching a fit, and the mom yanked his arm so hard she dislocated it. She was hysterical when I told her I was calling CPS, kept insisting it was a mistake and that she hadn't meant to hurt him.” Jenn glanced at Grace. “You know what I told her?”

Grace shook her head.

Jenn took a deep breath. “I told her, ‘too bad.' No sympathy, no attempt to understand, just ‘too bad.' She didn't get to make that kind of mistake with a child, I told her, and if she did, she wasn't going to get the chance to make it again.” Jenn exhaled slowly, her breath like smoke. “As if I never made mistakes with my kids.”

“You didn't dislocate their arms, Jenn.”

“No, but remember that time I plunked Henry into the bath without checking the water, and it was too damn hot? What if someone in the ER had accused
me
? And they could have,
easily,
and I would have lost him.” Her eyes filled. “Can you imagine?”

They started walking again, hands in their pockets. Twigs and broken branches crunched underfoot. Away from the sun, the air felt frigid. Lights flickered on in the houses across the lake. Her own house was dark. She and the kids had gone over earlier for clothes and books. The beds had been unmade, dishes filled the sink, chairs were pushed out from the kitchen table. The house had felt abandoned, like a house where something horrible had happened.

“I feel so stupid,” Jenn said. Her nose was red with cold.

“Why?” Grace asked. “You care about kids, Jenn, and you see a lot of crap that would probably make me jaded too. And for all you know, you were right about that kid with the dislocated shoulder.”

“But what if she was a good mom, Grace? What if CPS took the kid?”

Grace looked at her. “That's what scares me.” She stepped over the rotting trunk of an oak. “Eric Markind probably believes he's doing the right thing too.” She looked up, holding her face to the last of the setting sun. “How can I fault him for that?”

In front of them the lake glowed silver, the sky streaked pink and gold. “You have so much support, Grace, “Jenn said. “Every nurse on that floor is behind you.”

“So they all know. I wondered how quickly it would get around.”

“Everyone's pretty upset. They really care, Grace. It's just—” she stopped.

Grace looked at her. “Just
what
?”

“Nothing, I—”

“No. Just
what
, Jenn?”

Jenn stared at the ground. “It's just that he's doing so well.”

 

“So how long has it been since we've seen you?” Grace's mother asked Jenn as she set the sugar bowl and creamer on the table.

Grace and Jenn looked at one another. “Seven years?” Grace said. “Erin's christening.” Jenn was Erin's godmother. “You had the flu for Jack's, didn't you?”

“Seven years?” Jenn shook her head. “That's crazy.”

Grace's dad smiled. “Goes like that, doesn't it?” He snapped his fingers. “And can you believe this one?” He nodded at Max. “Taller than all of us.”

The coffeemaker gurgled on the counter behind them, steam rising from the pot, the kitchen filled now with the scent of hazelnut. They'd eaten early so that Jenn could join them. Daylight Saving was still a week away, though, and already the sky was dark.

Grace's mom handed Jenn a mug of coffee.

“Perfect,” Jenn sighed after taking a sip. And then, “So what are all the little notes?” She nodded at the glass vase that sat on the lazy Susan in the center of the table.

Max looked up. “Nooooooo,” he groaned.

Jenn cocked an eyebrow at him. “Love notes, Maxwell?”

“Worse,” Max moaned.

“It's a Question Jar,” Erin was explaining. She was wearing Jenn's beret, which kept falling over her eyes. “We have one at our house too.” She leaned forward on her knees and spun the lazy Susan. “Can Aunt Jenn pick a question, Grandma?”

Max slumped forward as if he'd been shot. “No,” he whispered. “I beg you.”

“Not enough hockey questions,” Grace's dad explained.

Her mother set a plate of brownies in front of her grandson. “Think one of these might ease the pain?” she teased as she sat down. She glanced at her husband. “We've had some great conversations out of some of those questions, haven't we, Paul?”

“We surely have.” Her father smiled, and for a moment, the tiredness around his eyes disappeared. He passed the brownies to Jenn. “So what question did you pick?”

Before Jenn could answer, Max, in a breathy Marilyn Monroe voice, said, “If you could make the sky
any
color you wanted, what color would you choose?” He fluttered his eyelashes. “Just listen to your
feeeeeelings
.”

“Don't listen to him,” Grace's mother laughed. “It's not like that.”

“It is too!” Max yelped, spewing crumbs. “Come on, Mom—Erin! Admit it! We had that question!”

“Sit,” Grace laughed. “And yes, I admit it, we did.”

“But it didn't tell us to listen to our
feeeeelings
!” Erin giggled.

Jenn grinned. “So I read this out loud?” She unfolded the square of paper.

Erin nodded. “And then we all take turns answering.”

Jenn cleared her throat. “You listening, Max?” She winked at him. And then read:
“If you could teach everyone in the world one skill in which you yourself are adept, what would you teach and why?”

“What's wrong with that?” Grace's mother asked Max. “That's a great question.”

“I'd teach everyone CPR.” Jenn folded the paper. “Does this go back in the jar?”

Ellen shook her head. “We'll throw it away.”

“CPR, huh? Why not how to donate blood or…I don't know, something with greater impact?” Grace's dad asked. He glanced at Grace and shrugged slightly, as if to tell her that he knew how little any of this mattered right now.

“You can't imagine how many lives would be saved if people knew CPR.” Jenn was saying. “And it's not complicated.”

“Now, see, that's a good answer,” Grace's mother said. “I'm not sure I'd have anything that worthwhile.”

“Teach us to bake brownies.” Jenn took another bite. “These are amazing, Ellen.”

Paul smiled. “A lot of unrest in the world could be solved with these, honey.”

Sadness flickered briefly in her mother's eyes. Grace watched her, wondering what it was about. Regret over her own choices not taken? And what were they? Grace realized she had no idea. “I should hope I have more to contribute than a recipe,” her mother said, but she didn't say what, and turned instead to Max. “What about you?”

“And don't say hockey,” Erin commanded.

“Hockey,” he taunted.

They took turns choosing questions, reading them out loud.
If you had to choose an adjective to describe yourself, what adjective would you pick
? The night filled with the sound of their laughter, the scent of hazel-nut coffee.
If you could be holding onto any object in the world right now, what would you be holding?
The tablecloth was littered with brownie crumbs and colored scraps of paper.
If you had to be lost somewhere, where would you be lost?
Grace kept fighting the urge to weep, not with sadness, but with gratitude: for her parents, her kids, Jenn. I will never take them for granted again, she promised, staring at their reflection in the dark glass of the window.

If there was one invention you could uninvent what would it be?
E-mail, Grace thought. It made it too easy to say what shouldn't be said. There was no time between thinking the words and sending them as there might have been with a letter, and no immediate repercussions as there might have been with a phone call. In her heart, she knew that the accusation last spring was connected to the e-mail she'd sent Noah:
I've never stopped loving you
. Someone must have seen her with him in Cape May and begun to wonder. One of the residents had family in Cape May, didn't he? And that little girl who was in the hospital last year, waiting for a heart—wasn't she from Cape May? It wasn't that far. It could have been anyone. All Grace knew was that she had been okay until she e-mailed Noah. Like someone terrified of heights who is fine until she looks down and sees how high up she is. Grace had done that with her life, glanced back last February and realized how distant she was from who she had once been, who she had wanted to be, and she had panicked and grabbed hold of Noah, as if he could save her from falling.

If you had a jar filled with anything except money or food, what it would it be?

Time, she thought. More time.

“Not questions!” Max laughed.

“Medicine,” Jenn replied. “Cures.”

If you could return to the best day of your life, what day would you return to?

Grace sipped her coffee, its warmth spreading a small ache through her chest.
If you could somehow swallow a pill that would stop one thing of your choice from happening, what would that pill stop?
She glanced around the table, everyone's face illuminated in the candlelight, and it was as if the sound had disappeared and she was watching this scene from somewhere else, staring into her future from the other side of the window, and it struck her with the force of a blow that this was how it would look after Jack was gone.