The Life You Longed For (19 page)

An ad for antidepressants.
If you have experienced any of the following symptoms for a period longer than two weeks
…She wearily scanned the list: excessive sleep during normal waking hours, insomnia at night, sudden weight gain or weight loss, lethargy, irritability, tears. “Talk to your doctor,” the ad said. “You don't have to suffer alone.”

She closed the magazine and set it back onto the glass table next to her chair. She knew that she had all the classic signs of depression, but she was afraid to talk about it, afraid to get the prescription for Zoloft refilled.
Mother has history of depression.

I can't win
, she thought. But she didn't want to anymore. She just wanted the accusation to go away, the file to be closed. Which meant that she would continue to be demure and grateful at Jack's doctor appointments, and she'd let Stephen ask the questions, and if she read the medical journals, she'd do it secretly the way in sixth grade all the girls passed around Erica Jong's
Fear of Flying
tucked inside a textbook so they wouldn't be caught reading the sex scenes. She'd learn to speak like a regular mother, saying “he's been moody” instead of “he's had increased lability,” and “his coordination is off” instead of “he's hypotaxic.” She'd been a fool. Saying the wrong lines, upstaging the leads. Silly mother. Didn't she realize she had only a bit part in this play? The doctors were the heroes, not her! Or was it her delivery? Was that the problem? Fine. She'd halt, stumble, carry Kleenex with her everywhere. She'd wear mascara that wasn't waterproof so that everyone
knew
she cried. And she'd smile and be courageously upbeat and talk about how Jack was her special angel sent by God, and she'd wear pastel-colored sweats and let her hair go gray—was that it? She didn't have the right costume? How dare she color her hair when her child is dying? Or laugh! Joke! Shame on her! How dare she?

T
he nineteenth-century physician William Osler once observed that “every age gets the disease it deserves.” He was right. Think of the diseases marking the start of the twenty-first century: Alzheimer's, heart failure, depression, mitochondrial myopathies. Are these diseases fitting because in a world that we have betrayed so thoroughly, all that remains to betray is ourselves? There was a time, after all, when the worst diseases came from elsewhere: polluted water or air, virus-carrying mosquitoes. Now, however, some of the worst damage comes from within. We are—literally—our own worst enemies.

At the beginning of this century, more than five million Americans had Alzheimer's. Each year 370,000 new cases are diagnosed. It is not memories that are lost, however, but the synapses between those memories.
Synapse
meaning “to clasp” or “hold tight.” Scientists now tell us that each time we remember something specific—the man we once loved, the song we once danced to, the color of his shirt that first night, the color of the sky—the synapse “clasping” that memory grows stronger. Like a path through the woods that becomes more defined each time we walk it.

If this is true, though, what then does it mean to forget?

 

And heart failure. Every twenty seconds someone in the United States suffers a heart attack, and with each, the heart grows larger, emptier. Like the homes we now live in with their cathedral ceilings and cavernous rooms, all that space and absence, as if to compensate for our families having grown smaller, the bonds between us frayed with distance. Not too little oxygen, then, which results in these failures of the heart but, perhaps, too little love.

And maybe
this
is why depression is currently the fourth leading cause of disability worldwide, according to the World Health Organization; maybe this is why depression is the leading cause of disability in the United States, where
10 percent of the adult population takes antidepressants. How easily we forget that depression, with its symptoms of silence and withdrawal, is not merely chemical, but also a means of saving our energy when we have very little, of protecting ourselves when we are most fragile. Something has broken in us that medicine alone cannot cure.

We have grown so estranged from ourselves, however, that even our illnesses deceive us. Two-thirds of all heart attacks are silent, the person never suspecting that a part of him has died. Alzheimer's begins years before there are obvious symptoms. “A disease of insidious onset,” doctors call it, meaning that it has no definitive starting point. And mitochondrial disease. Perhaps no other disease betrays us as well or as thoroughly as this.

“That notorious masquerader,” one expert called it, for mitochondrial disease throws on the mask of any number of illnesses. First it manifests itself as liver failure, then heart disease, next asthma or arthritis, but it is none of those and so will not yield to diagnosis attempts, to the usual cures. And just when—if—it does reveal itself, the disease shape-shifts yet again: now blindness; now bone marrow disease. And this is not all. Cells with normal mitochondria lie next to those with dysfunctional mitochondrial. Patients with identical mutations have completely different symptoms. In some, the disease progresses slowly; in some, it remains stable for years. There is no understanding why. No cure.

Mitochondria. Upon discovery in the years between 1850 and 1890, these minuscule foreign organelles were alternately called by a plethora of names.
Blepharoblasts, Interstitial bodies, Speroblasts
. Imagine rockets hurtled into space and landing in otherworldly geographies, galactic and dark.

“Every Betrayal is a kind of flight,” writes Aldo Carotenuto in
To Love, To Betray.

So, of course, is every disease.

G
race stood in the lobby of Children's, clutching her coat over her arm. She stared at the row of numbers atop the elevators as if her concentration alone would hurry them. The numbers lit up in descending order as the elevators returned to the lobby.
He's going to code if we don't—
She closed her eyes against the words of the ER doctor. An intern, a resident, had he even known what he was doing? She switched her coat to the other arm. What was taking so long with the elevators? They were glass on two sides so that you could peer out at the brightly lit lobby with its huge mobiles and interactive displays: colorful discs connected by huge pulleys and levers and slides—a model of the digestive system—or a light display that replicated the firing of neurons in the brain. There were funny mirrors and a McDonald's, and parents and kids would survey it all from the elevators as a means of distraction from whatever horror had brought them here. Grace used to do the same thing with Jack: “
Wow, Goose, look how high we are!”

“Just like Mr. Moon, Mama!”

She didn't hear Anju say her name until the doctor touched her shoulder. She jumped, then immediately began backing away.

“No, no, he's okay,” Anju said. “They're transferring him up right now.” Up. The CICU on the sixth floor. Cardiac Intensive Care Unit.

Grace nodded, then fastened her stare back on the lighted numbers. Both elevators were stopped at the third floor, which housed the ECHO and Cath labs and cardiac intake units. The third floor was where she and Jack had spent most of their time this past year. He'd only been on the sixth floor once before. It had been horrible.

“Grace.” Anju's voice was gentle. “I think we should talk.”

Grace didn't turn. “Not if it's about the DNR.” Do Not Resuscitate. The phrase was like the white cue ball in a game of pool, slamming everything else into its dark pockets.

“These episodes will get worse, Grace, and they'll become more frightening for Jack, as well.”

Episodes. Ventricular fibrillation.

The elevator chimed as the doors opened. Grace stepped inside. “He was in the grocery store with me, just this morning, laughing—”
Laughing
. The word registered, like a flash of light on water, before it spun out of reach. She pushed from her mind the image of the tube in Jack's throat, his chest heaving up and down from the pressure of the ventilator,
He's going to code if we—
“He was sitting in the cart and I was pretending to crash it into things and—Oh, God, Anju, I can't—” She stopped. This can't be it, she wanted to say. I'm not ready, I thought there would be more time, that we would know it was getting close, that he'd be sicker or at least not
laughing
in the grocery store one minute and in the next—“DNR is not an option,” she said as the doors closed on Anju.

 

Grace sat in the rocking chair by the sixth-floor window overlooking the hospital parking lot. Jack lay against her chest, the trail of tubes and wires and IVs falling over her knees, like the threads of an unraveled quilt. Saline and electrolytes dripped through the IV in his wrist. He'd been asleep since the night before, drugged on morphine. But he was out of the CICU, off the ventilator, and his heart no longer felt as if it would gallop from his chest. She caressed his swollen, almost translucent cheek with the knuckle of her index finger. His eyelashes flickered, tiny shadows across his otherwise still features.

“Hey, I heard you guys were here,” Rebecca said, rapping lightly on the door frame. “How is he?”

Rebecca was Jack's favorite nurse. She was beautiful: white-blond hair pulled into a ponytail, Nordic blue eyes, a ballerina's perfect posture. She worked the late shift because her husband, a jazz pianist, usually had a gig during these hours. Grace had seen him a few times when he stopped by the hospital on his way home. A tall man with dark circles under his eyes, his clothes smelling faintly of smoke from whatever bar he'd been playing in. “You're Jack's mom, right?” he said to her one night as they stood in the communal kitchen, Grace boiling water for tea, Colin heating up a container of take-out Chinese food. “Becca talks about you guys all the time. She really admires you.”

Now Rebecca walked quietly into the room and leaned over Jack, taking one of his inert pudgy hands in hers. “Hey, buddy,” she whispered, caressing the top of his wrist with her thumb. She smelled faintly of cloves. “He's really swollen,” she said, glancing at his oxygen saturation numbers.

“And this is ten times better than he was.”

Rebecca shook her head. “I'm so sorry,” she said, her brows furrowed with concern. “How are
you
doing?”

Grace shrugged dismissively and glanced at Jack. If she said she was fine would Rebecca think she was
thriving
on the drama? She couldn't even look at Rebecca, feeling betrayed all over again.
Mother refers to hospital as home away from home
. Tears burned her eyes. Why did you talk to that social worker about me
?
she wanted to ask.

The sun fell in the window behind them, the orange light reflecting in the plastic bag of fluids that hung from his IV.

 

After Rebecca left, Grace rocked slowly, holding Jack and simply watching him, her heart heavy with the immensity of the love she felt for this child. She leaned her head against the chair, eyes closed, and prayed. She couldn't imagine her life without him, couldn't bear to think that she would have to. How did a parent ever survive? She glanced at him again, not wanting to waste a single moment, memorizing him. His damp curly hair, the long daggers of his eyelashes, his pale chapped lips. Without the bright overhead lights, the room was steeped in gray. His tiny heartbeat was visible through the yellow Big Bird hospital gown that made him look jaundiced and sicklier than he was.

“Sometimes when Jack was a little tiny baby,” she whispered now into his ear, “his Mama would rock him and rock him and then rock him some more, until finally her arms got tired, and she would give Jack to Daddy.” This used to be his favorite story, the one where everybody took turns rocking him. A chain of arms. “And then Daddy would rock Jack in his arms and rock him and rock him some more until
his
arms got tired and he would give Jack to Max.” The chair creaked. “And Max would rock Jack and rock him….” On and on: Erin would rock him, and all four of his grandparents, and his Uncle Jeff, and Dr. Mehta and Rebecca and Aunt Jenn and then they'd start all over.

Now Jack lay still, eyes closed, though his ragged breathing sounded steadier. In graduate school she'd read Holt's
The Care and Feeding of Children,
one of the primary books on raising children in the late nineteenth century, responsible in large part for the replacing of cradles with cribs. Holt had asserted that rocking a child was a “vicious practice,” encouraging a child's “unhealthy dependence on unnecessary stimulation.”

“He was a silly, silly, man, wasn't he?” Grace whispered to Jack. He didn't stir. Her arm had fallen asleep. Her thoughts wandered to the accusation. Stephen would be here soon to spend the night.
Mother-perpetrator refuses to leave child alone in hospital.
Her heart sank at the thought. She had never left Jack for an entire night before, and it felt wrong, no matter what the reason, no matter that Stephen would be here instead. All those studies on animals who, when separated from their mothers and given surrogates—one made of wire that offered a bottle of milk, another made of soft padding that didn't offer the bottle—always chose the soft one, touch more vital to survival than food. Or those experiments on infant mice. Deprived of their mother's touch for a single day, their brain cells died at twice the rate of their steadily mothered counterparts. She stared at the bright yellow balloon one of the nurses had tied to the foot of Jack's bed. Even well into the twentieth century, the death rate for infants in foundling institutions in the U.S. was nearly 100 percent,
not
because of lack of medicine or nourishment, but because no one held them. Something that simple. And yet,
Mother refuses to leave child alone in hospital
was one of the warning signs of Munchausen's.

Of course mother refuses, Grace thought sadly, swallowing hard.