The Life You Longed For

by Maribeth Fischer

  She felt nothing, or felt too much. The result was the same in the end. Too much anger, too much grief, rage, fear, guilt, and shame, and it was like mixing too many different colors of paint together into a muddied nondistinct gray-brown, the color of wet sand. That was what she was, what she felt. Gray-brown. Her thoughts swirled, made no sense. A friend of her dad’s, a retired pilot who lived in Florida, was cleaning out a swimming pond on his property a few years before, when he saw an alligator. “I was sick with fear,” he said later, until the alligator suddenly turned, and rolled onto its side. Alligators do this after eating, he knew, when they are full. He could breathe again; he was not in danger. But then he glanced down. He saw that his arm was gone.

  Grace thought of this as she drove numbly through the late morning traffic. She was in shock. At some point she would look down. She would realize that a part of her life, a part of her, had been amputated. It happened so quickly, before she even knew it.

  Twenty-Two

  The forty-eight hours before the evidentiary hearing were, for Grace, blurry and fragmented, so that later, trying to remember those two days, all that survived were small inexplicable moments that had somehow been salvaged. Memories, like bruises, marking the place of damage. Grace couldn’t recall what Bennett had said to her when she arrived at his office, but she would see with perfect clarity those four black-and-white photographs of the bridges connecting Philadelphia to New Jersey. Perhaps she stared at them so intently that day because it was easier than looking at Bennett, this man who knew the most shameful things in her life: she’d been an unfaithful wife; she was now considered an unfit and abusive mother. Or maybe it was that the purpose of a bridge is to join what is otherwise separated, and it was how her life felt that day, separated, disconnected, cut off, as if she were standing across a river from everything she had once been. Or maybe, maybe, she stared at those photos for no better reason than that they were black and white, and she needed the illusion of order that the absence of color provided.

  She wouldn’t recall driving home afterward or talking to her mother on the phone, though she did, or what words she used to explain to her children’s school principals why she needed to take her children home, and why they would be absent for the rest of the week. Hours would dissolve into nothing more than a handful of images: Max mumbling under his breath, “I wish they would keep you away from us!” and Erin crying, and her mother rushing, coatless, from the house, her face stricken with fear when Grace pulled up with the kids. The slant of light on the blond wooden floor in her parents’ hallway, an empty hummingbird feeder swaying from a tree out back, her father, looking older than Grace could remember, his eyes like two dark holes in his face, hugging her tightly, and whispering, “That hospital isn’t going to know what the hell hit it when I’m through, Gracie.” And then, breaking down, crying in front of the kids. It felt as if Jack had already died, and she had to keep reminding herself that he hadn’t.

  She explained to Max and Erin that there had been a misunderstanding. Bennett’s term. It had sounded preposterous a month earlier, but now she understood: there was simply nothing else to call it. Misunderstanding.

  They were on their way to her parents’ house from school. “You know how there are some people who don’t understand mitochondrial disease?” she began. “Like how Jack’s really sick one day, then all of a sudden he’s fine?”

  “That always happens, doesn’t it, Mama?” Erin said. She was sitting in the passenger seat, her goose-bumped legs protruding from beneath a red-and-black plaid kilt. Grace reached over and rubbed her legs, stalling. “Silly girl,” she teased Erin. “What were you thinking going to school with nothing on your legs?”

  “I didn’t think it would be so cold,” Erin whined.

  “It’s okay, lovey. We’ll be at Grandma’s soon, and we’ll get you all warmed up.”

  Erin beamed. “We’re going to Grandma’s?”

  “Why?” Max demanded, slumping even further into the backseat. Arms crossed over his chest, furious at missing school on a game day.

  Grace glanced at him in the rearview. “It’s only for a few days.”

  “A few days!”

  “Max, if you’d let me—”

  He flicked his eyes at her coldly, then returned to stare out the window.

  Grace opened her mouth to explain, then closed it, staring straight ahead. After a minute, she said, “Your dad and I think it would be better if we stayed with Grandma and Grandpa until this misunderstanding gets straightened out.” She glanced at Max again, but he wouldn’t meet her gaze. “There are some people who don’t understand Jack’s disease, and so they think maybe I’m doing something to make him sick.” Her voice caught, and she stopped, biting the inside of her cheek to keep from crying. “Anyway,” she continued, “these people want me to stay away from Jack for a few days to see if he gets better.” She rolled her eyes at her daughter, emphasizing how ridiculous it was. “Seems kind of silly, huh?”

  “That’s way silly, Mama!” Erin agreed too enthusiastically, and Grace ached for her. When—she was only six—had Erin learned to do this? Pretend that everything was okay when it so clearly wasn’t?

  “Oh, yes, way silly,” Max sneered.

  “Come on, Max,” Grace pleaded.

  “Why?” he exploded. “I’m so sick of Jack’s stupid disease ruining everything!”

  “Ruining?” Grace pulled into the gravel drive of her parents’ house. Stones crunched beneath the tires. “Since when is missing two, maybe three, days—”

  “Three? No! I can’t, Mom! We’re playing Cherokee Friday!”

  Grace shut off the car, and turned to face her son. “I’m sorry, honey. I really am.”

  “I wish they would keep you away from me,” he mumbled.

  “Just get out,” she said wearily. “We’ll talk when you aren’t being so nasty.”

  “Fine. But I’m not as stupid as you think.” He opened the door. “You probably are making him sick.” He slammed the door.

  “She is not!” Erin shouted through the closed window.

  Max turned around and laughed at her.

  “I hate you, Max!” she screamed.

  “Shush, honey, it’s okay.” Grace hugged Erin to her chest. “He’s just mad. He doesn’t mean it.”

  Later that afternoon, the three of them took a walk in the woods, trampling through mud and soggy pine needles. Grace’s dad, tired of Max’s attitude, had forced him to go along. “If you’re upset with your mom, you need to talk to her,” he insisted.

  “She doesn’t listen to me!”

  “Then try again.”

  Now Erin sprinted ahead, a little forest sprite in a pair of her grandmother’s leggings, rolled up at the waist and cinched with a clothespin, a huge sweatshirt over that, falling nearly to her knees. They hadn’t been back to their own house yet to get extra clothes. The weather had turned suddenly warm, enough so that Grace and Max could tie their jackets around their waists as they walked, though their faces still shone with cold. It felt to Grace as if an entire season had come and gone since the morning. Her chest ached with the thought of it. Sunlight flickered through the trees in splotches. It had a dizzying effect, as if the ground were moving beneath her. The sky was bright blue. What was the color? Teal almost. Or ultramarine. Swimming pool blue.

  Max walked behind her, still not talking. Erin dashed back every few minutes, ebullient, breathless, pigtails askew, her skinny freckled face pink with cold. “Look what I found, Mama!” She would hand Grace a pinecone, a pretty leaf, a smooth stone.

  “Maybe she’ll be a scientist,” Grace said, watching her run off again.

  “Yeah, right.”

  Grace glanced at him “I really am sorry about your games,” she said.

  He didn’t answer.

  “Look, Max,” she sighed, pushing a tree branch out of her way, then stopping to hold it back for Max. It felt like the most solid thing she had held all day. “I don’t know what you think y
ou know, but it might help to talk about it.”

  “Why? Are you doing it?” He ducked under the upheld branch and kept walking.

  She jerked her head up. “Am I doing what?”

  He kept walking and without thinking, she strode up behind him, grabbed his shirt—hard—by the back of the neck, and swung him around to face her. “Doing what?” Her breath hung in the air. She wanted to slap him. “Say it to my face, Max.”

  “God, Mom, lighten up.” He shrugged from her grip. “I was kidding, okay? It was a joke.” He started to turn around.

  “Don’t you dare turn away from me when I’m talking to you.” Her voice shook.

  He turned back, rolling his eyes.

  She stared at him, jaw clenched, trying to calm down. “What is it that I’m doing, Max?” Panic settled in the pit of her stomach. “Am I making your brother sick, is that it? Do you think I’m trying to kill him?”

  He dropped his eyes from hers. “No, okay? I don’t think anything.”

  “Yeah? Because there’s usually an edge of truth in the jokes people make, Max.”

  “You guys!” Erin called from up ahead. “Come on!”

  “We’re coming!” Grace called, then turned back to Max. “Don’t you ever say that again, do you hear me? Don’t you ever even suggest it. I don’t care how mad you are, I don’t care if you do think it is a joke.” Her voice frayed, and she glanced away. She knew that she needed to explain to him why she was so upset; she knew that he didn’t really understand the ramifications of what was going on. She pulled in a deep breath and tried to start over. “If someone ever heard you question, even as joke, that I would hurt your brother…” she swallowed hard. “They could, and they might even have the right, to take you and your sister away from us.”

  “But I was only—”

  “Listen to me!” she yelled. Her voice echoed in the clear air.

  His face went slack, though his eyes still challenged her.

  “Max,” she began again, “if any mother, ever, hurt a child on purpose or tried to make her child sick, she would deserve to lose her children . I would want her to lose her children. And if I ever intentionally hurt Jack or you or Erin, I would want you to be taken from me so that I couldn’t do it again. Do you understand? This isn’t an issue to joke about. It’s like kidding around about guns when you’re boarding an airplane. Nobody’s going to care if you’re joking. They’re going to arrest you because they can’t afford to take any risks. This is the same thing.”

  “Fine. I won’t joke about it again.”

  “Thank you.” She looked at him. “Why don’t you go catch up with Erin? I’ll be there in a minute.”

  But he didn’t move. “I really was only joking,” he said. “I was just mad.”

  “I know,” she sighed. “But honey, you cannot use getting mad as an excuse to say or do whatever you want.” He was staring at the ground, his long lashes casting shadows over his pale skin. Something in her tore. He was only thirteen. She had to keep reminding herself of this. Thirteen. “Come on,” she said more gently. “Let’s just walk,” and she started forward, but he stayed put, head bowed, refusing to budge.

  “Hey,” she said, then saw the tears beading on his lashes. His nose was bright red, his mouth pinched with the effort not to cry. “Oh, Max,” she said. “I know this is scary and I know we should have talked to you.”

  “I don’t know why I even said it.” Tears dripped onto his sweatshirt. “You’re nothing like them.” He was crying openly now. “You’re not like them at all,” he sobbed.

  Her mouth went dry. “Hold it—not like who?”

  “Those mothers on that Web site, that M.A.M.A. thing.” He sniffled. “You didn’t log off one day and so I looked at it. I just—I was scared, I kept hearing you and Dad fighting and you were crying all the time and I didn’t know what Munchausen’s was. I thought it was like, some kind of disease or something.” He started sobbing, and she pulled him to her, crying now herself. “I thought you were going to die, like Jack,” he sobbed.

  Grace sat at the kitchen table, warm in a pair of flannel pajamas she’d borrowed from her mother, the house quiet around her. Like being in high school, she thought, coming home after field hockey, then studying, sitting here at one or two in the morning, long after her parents had gone to bed. This same table in this same kitchen. The same silhouette through the bay window of black trees against a milky black sky. Noah had been in her life then too, she thought, and the longing she’d suppressed all day—to phone him, to tell him what had happened, bubbled up in her throat. They took him. Three words and he’d get it, he’d understand how scared she was, how terrified that maybe it was connected to him, how guilty she felt. Three words.

  She punched in eight of the nine numbers, hesitated, her heart slamming against her chest, hit the last number. They took him. Already she was crying again, and when she heard his voice, she began sobbing silently, afraid to wake her parents. They took him. There was nothing else to say.

  She set aside the article she had just finished reading and turned to the next one: “Children, Pain and Parents: An Epidemiological Triangle.” Eric Markind, M.D. An epigraph read: “Even now I wrap what’s most fragile in the long gaze of science.” Me too, Grace thought. Always she had used science, or tried to, as a barricade against her fears, tried to make her life safe by cushioning it with facts. The irony was that the Munchausen’s accusation stemmed from the same longing to make comprehensible what wasn’t, as if surrounding something with information was to somehow understand it.

  “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 importa
nt 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.