Earthquakes
I experienced my first earthquake while taking the California bar exam. In a cavernous room of thousands of future lawyers, half of us ducked under our tables while the other half continued writing, uninterrupted.
“What were you thinking?” I asked a few who continued writing after the earth stopped shaking.
“It’s the bar exam!” they said. “I’m not fucking around. You only get one shot!”
Of course, you are entitled to as many opportunities to pass the test as you need. What you don’t necessarily get is a second chance after part of a building crashes down on you. When the building shook, I mimicked what I’d seen on TV and hid under my table in the conference center with hundreds of other test takers. Some of them had even brought the test with them. I guess that was supposed to demonstrate a commitment to the law.
My second earthquake is while I am sleeping by Abby’s bed during our second week in the NICCU. It is probably one of the safest places I could have been. Confined inside the protected walls of a newly renovated hospital, I wake up to phone calls and texts asking if I am OK. I don’t even realize that the earth is shaking beneath us hours earlier. It is one of the first nights I am able to sleep.
Hospitals can offer emotional safety where the outside world often fails. I frequently forget this. I want the comfort of my home; I want to escape the sterile, cold hallways, but I also want the immediate access to help and answers (if they exist) with the push of a button. I want Abby to come home, but I want her to stay in the hospital a little bit longer so that they can monitor her for seizures and stop them immediately if they begin. I want what I know I can’t have.
We are discharged with very few instructions. She hasn’t seized once since the day we brought her into the hospital. Her fever has broken. She has no visible deficits from the bleed, a positive indication for the future. She is still breathing and sucking and eating, and all four limbs are moving. My family members note how well she looks. Perhaps they are blinded in part by hope, by love, by the prophetic outcome they want, but to me and Amir, she is gaunt and pale, thin and frightened. There is no need to keep her in-patient, though, so home she comes, with no framework in place if this recurs, except to return to the hospital.
While Abby was hospitalized, Amir and I were immersed in the interactive support of trauma: of daily emails and texts, phone calls and messages. Generous offers to visit from friends and family around the country, gifts of food, promises of nightly cooking into the future, unceasing expressions of love and support. We needed every breath of this despite our lack of reciprocation. But after discharge, there is a presumption that everything is fine. The illness has lifted and the injury is contained. The trauma is over, all is well, and Goddamnit if you don’t go out and celebrate. What are not always visible are the aftereffects, the emotional costs of the in-betweenness of posthospitalization. It is here where the frustrations Kendall expressed to me surface. Where the desire for positive thinking is thrust upon you before you can wrap your head around reality, and then have to convince people that you are not a pessimist—you are merely going through the day-to-day of caring for a sick infant.
During the initial weeks after we take Abby home, Los Angeles is privy to several more earthquakes, mostly small. We have some damage: a few broken plates; a glass bowl that shatters, sending deep scratches into our floors. And for the first time, we are in sync, the world and I.
• • •
UNCERTAINTY TRAVELS IN MANY COSTUMES. For some, it is the question of when death will arrive. For others, whether cancer will strike. When will I meet my life partner or experience that long-awaited moment of professional success? In Rosencrantz and Guildenstern Are Dead, Stoppard focuses on these minor characters of Hamlet as they weave in and out of reality, bumping into the alternative and melodramatic Hamlet in their universal search for identity. They are waiting. Waiting for the next step, for an answer to something while they contemplate life and death. But the parent work, Hamlet, is the one that presents the ultimate question. In his pursuit for the meaning of life, of course Shakespeare writes Hamlet returning to the universality of uncertainty. He doesn’t just ask if he should be. He also asks if he should not be. An uncertain future. An uncertain life. That is the question that trails each of us.
I immerse myself in literature and memoirs on grief and loss, stories of sick children and sick parents, not knowing what my future might be. I learn over the course of the next few weeks and months that without knowing what caused the brain bleed, doctors are no better equipped to predict and prevent a future one. We won’t be able to anticipate problems until they appear, or do not appear. This is quickly becoming a story that has nothing to do with grief or planning for grief, or treatment to combat an illness, but rather coping with the uncertainty of health in the dense fog of evolving medicine. Amir can explain terms to me, provide statistics where a dangerous Google search would lead to panic, but talking to him does not replace my need for private contemplation. When he walks away, I reach for a book that isn’t there. I don’t want to read psychological studies. I want literature, essays and short stories, memoir and narrative nonfiction that comfort me as I walk a similar path. Or just as easily stray from it.
The only way I could make sense of anything was to pull out a notepad inside my tiny room in the NICCU and write. I wrote about what happened, about what might happen, what might not happen. Every night, in between pumping and feedings, scheduled infusions and timed temperature checks, I pulled down the cushions of the couch, covered it with a sheet, lay on my back, and wrote down my questions for the doctors, my thoughts, my fears.
I freely admit that there are far worse cases of illness, injury, and disease. In fact, I can recall several cases on the NICCU floor during our time there alone. These stories—of acute injury and chronic illness, painful decisions with unknowable outcomes, all swarming the spectrum of what makes life uncertain—haunt me. On the hospital floor, I witnessed codes with sadder endings. Babies born prematurely without organs who I suspected would not live beyond the next few days. Children suffering from terminal illnesses. Young children walking in and out of the pediatric intensive care unit fully aware of their medical status. I spoke with some of these parents and just observed others, wondering how they analyzed their future, how they interacted with the outside world, how they explained to their families not only the medical terminology but also the concept of their own uncertain future. For most of them, this is the most difficult part of their stay. Many patients can put on a strong face and bear the pain if they know the outcome. Many parents can prepare, devastatingly so, for home care if they are given specific instructions, which sometimes, though rarely, comes. But without that knowledge and direction, the virus of uncertainty spreads to epidemic proportions.
Time Will Tell
Before we are formally discharged, we wait patiently through the final exit visits from various specialists. I hug our neonatologist and wish her well. I hug our nurses. I wait for the neurosurgeon, whom I know I’ll see in a few weeks’ time for a follow-up MRI. Above all, I am eager to speak to the neurologist. In my mind, she will be able to at least examine Abby and provide a stencil of clarity that could help me redesign our future.
“What sort of deficits are we looking at?” I ask.
The neurologist shrugs and makes a comment about infant brains being plastic and this being a good thing. But I press her further. Is this simply going to be a bad memory for me, or a different future for her? For all of us?
I hear that plastic brain comment again. The neurologist doesn’t smile much. She has a team of students and fellows with her. She seems unimpressed with Abby. She taps on Abby’s knees and feet, seeking reflexes. Abby is moving normally. Clearly, the neurologist isn’t yet ready to enter the equation and provide a forecast.
“Time will tell,” is all I remember her saying before walking out of the room with her team.
Other doctors come and go, signing off on her in-patient care. Most of them do not even require an outpatient follow-up.
“Go home and enjoy your daughter,” other doctors say. There’s nothing to do right now but wait and watch for hydrocephalus.
Hydrocephalus literally means “water on the brain” and is a build-up of fluid that puts pressure on the brain to swell, causing it to press against the skull. Hydrocephalus, or “hydro” for short, often follows a bleed like Abby’s and becomes something that doctors will monitor in Abby over the next few years. It can resolve on its own or resolve with surgical intervention.
We monitor Abby from home with head measurements to see if her head is growing, expanding like a beach ball filling with air ever so slightly. Every few weeks she’ll undergo a CT scan to measure the size of the brain ventricles and see if they are growing, potentially causing hydrocephalus. Every few months, we’ll get a better image of possible growth with an MRI. If the brain is expanding, then surgery is the next step, which would mean a placement of a shunt, a narrow tubing that could be surgically inserted in order to allow the excess fluid to drain. A dangerous procedure, as anything can be on the brain, it requires cutting into bone and tissue that can change physical and mental abilities with a slight twitch of the hand. Another possibility is an experimental surgery also designed to release the pressure and return the head to normal measurements, and hopefully a normal life. Or perhaps nothing may happen and the blood will continue to reabsorb, there will be no hydrocephalus, and all will be well.
This stage is waiting to watch the grass grow, to see the ticks of the clock shift. It is the natural extension of a brain bleed, a cruel reminder that once you’re discharged from the hospital, it’s only partially over. Next comes the hydrocephalus scare, and after that, rehabilitation and observation. One neurosurgeon tells us it might be two years until we’re out of the woods, while another thinks there will be resolution “one way or another” within the year. Not the cliché that time will heal all wounds, because it may for some and may not for others, but rather the prescription of time as the only source of answers.
During my efforts to learn all I can about hydrocephalus, I read that National Book Award–winning author Sherman Alexie was born with hydrocephalus in the mid-1960s, at a time when brain shunts were being heavily developed. He underwent surgery and had a temporary shunt placed. As one of our most renowned contemporary writers, he serves as a tremendous success story for some hydrocephalic babies and an example of what can happen with surgery, luck, effective therapy, and a superlative canvas.
His early 1990 poem, “Learning to Drown,” exemplifies the early trauma of hydrocephalus. In it, he explores how water on the brain is not just a fear from Alexie’s mother that the brain will float, but that her son would be trapped and taken from her.
1.
I used to go with my big brother
To a place on the Spokane River
Where he and his friends dared
Each other to swim
All the way across
To the opposite shore.
I would watch them,
Some too scared to swim
Past the shallow
Water, most making it halfway
And coming back, coughing
Water, a few struggling
In the middle
Of the river, treading
Water, my brother
Swimming beyond sight.
I remember watching
Water. I remember
Waiting for my brother,
Wanting to follow him
And recover myself again.
2.
Water on the brain
Makes the definition easier
To understand, anticipates
The questions always asked:
“What kind of dreams did you have?”
“Was it like drowning?”
I can still see my reflection
In water, my face
Flooding the banks, a body
Of water erasing boundaries,
Changing the distance
Between past and present.
3.
I remember the reservation girl
With Down Syndrome,
Weighing over 300 pounds,
Wading in Benjamin Lake,
Feet tangled in weeds,
Falling facedown
Into six inches of water.
My cousin, ten years old,
Trying to lift her,
Trying to turn her over
Trying anything
To make her breathe.
4.
My mother tells me
The doctors would not believe
My skull was growing,
Swelling, until my cousin
Dropped me from a swing.
My mother tells me
I measured
The size of your head every day.
It grew an inch in one week.
But the doctors said no,
It was a mother’s imagination
Growing. I had nightmares
You were pressed against walls
Of our house, breaking through,
That it would ever stop.
5.
Driving all night, I hear a story
On the radio about prisoners
Of war in some foreign country.
Their captors had no room left
To house them, nearly 600 men,
So they marched them down
To a nearby river
And drowned all of them,
One by one, while the other
Prisoners watched
From the river bank, silent,
Bowed into themselves.
“Pressed against walls,” a fear that you will never stop drowning. A terror that whatever this is will prevent you from reaching your potential. An overwhelming emotion independent of and completely relevant to any medical crisis.
Yet there is a glimmer of hope at such a young age. When there is a bleed in the ventricles of the brain, blood has a place to swim; it has a watering hole where it can rest and drain without instantly causing permanent damage. Moreover, in infants the skull is not yet fused together, so when blood collects in the ventricles, expanding them, it has a pressure valve, causing a bulge out of the fontanelle. In an adult where there is no opening in the skull, the blood pushes down on the brain stem potentially causing death.
Think of the spinal column as plumbing. Water from the top flows down to the rest of the pipes, but when the source is blocked, nothing can flow. When hair blocks a shower drain, water cannot leave the tub into the drainage pipes below, so it just continues filling the tub with water and overflows. For example, an adult brain is a tub with a hard lid on top. When the water overflows due to the blocked drain, there is nowhere for it to go. In an infant, though, the tub is covered with a handful of soft clay plates not yet hardened into cement. If the drain is clogged on an infant tub and the water cannot overflow, we can see the soft clay plates shifting and expanding to contain the water, buying time to unclog the drain.
Every hour I hear whispers behind the poetry.
Go back to your normal life. Enjoy your baby.
Does that mean I should enjoy her because I won’t have much time left? Or I should enjoy her as if this didn’t happen? As if it’s not going to happen again. Or get worse. Or until her full head of hair needs to be shaved to create a clean palate for a scalpel. I close my eyes and see my ten-year-old self’s eyes observing a workbench for a surgeon, and the goosebumps rise on my forearms.
Before we leave the hospital, a physical therapist swings by our room and is the only one who provides us with a plan. A silly computer printout of stretches and exercises. The gift of phantom control. If we do these, the neurons in her brain may reconnect properly and this will be a bad memory alone. Physical therapy in the form of “early intervention” may be the best solution. One of a few ways to take control back and intervene.
I take the printouts. They are nothing more than regular infant exercises that we do anyway. Moving her legs in circles. Shifting them back and forth. Ensuring a specific amount of time that she’s placed on the belly so that the neck strengthens and the two sides of the body are forced to use muscles evenly. I don’t know how yoga moves and massages on a newborn can fix something this big.
And still they don’t know what happened. The neonatologist spent many nights with us, admitting she didn’t know what had happened. She spent all night researching and thinking about Abby, she told us. I respected her for that honesty. She then asked Amir back into the doctor’s lounge to discuss the case, asking for any thoughts he had on it because, quite simply, they were stumped.
Yet Abby is discharged without her team figuring out what happened, without knowing if seizures would recur, without knowing if she’d be put on a path to, what medicine would deem, normalcy. The range of options: slight physical delays that could be remedied in a year or two with physical therapy on one end, or severe developmental deficits. A completely normal future or a re-envisioned normal. A or Z or anything in between.
But go home and enjoy your daughter.
I obsess over statistics I find online about Grade IV brain bleeds, the most perilous form of a brain hemorrhage. Some sites claim a 20 percent chance of mortality and 90 percent chance of severe neurological damage without painting a specific picture. Will we be aiding our adult child in her daily routine or will this be her college application essay topic? This is our daughter, we say to each other. We love her and will be here for her regardless. But now, maybe we shouldn’t have a second child. We always wanted two, but perhaps not anymore. Abby may need all our help, all our attention. Or she may not. Maybe she’ll be a genius and none of this will matter. Maybe she’ll be like my brother—profoundly sick as an infant, in and out of hospitals for years with severe respiratory problems, and later a college athlete.
But forget the long-term neurological concerns: the focus is now on hydrocephalus and neurosurgery. How can I monitor for this at home? I don’t have the tools, the skills, the education. How will I know if that rolling eye jitter is normal, or if she is crying because of cerebrospinal fluid leaking into her brain tissue, blocking flow into the spinal column, debilitating her in the same way it did Amir, who could describe the pain after the roller coaster? Is she just acting like a baby and crying for hunger? Or is it just gas? Is that twitch in her hand just fussiness or is it another seizure? Was she pulling her own hair so ferociously before the bleed or is she simply figuring out how to grab? Is she exploring the way her tongue moves within her mouth, or are sensory issues starting to form?
From home, we must monitor for seizure activity. We must measure the size of her head and visit our pediatrician monthly for official head measurements. Abby must have a cranial ultrasound every other week so the doctors can evaluate the size of the ventricles and measure them against each other, to determine if they are expanding from the blood spilled inside.
The doctors listen to me as I raise the same questions at each visit. To feel marginalized for your uncertainty while learning to drown is an unfair and unfathomable position, particularly when it is one of the few universal experiences we share.
But if the head measurements increase, she may have hydrocephalus. She may need brain surgery. I’ll have to understand how a shunt works and follow the path of replacement every so many years, if necessary, learning where it drains, and all the risks carried with neurosurgery on an infant.
First, though, let’s just wait and see.
Go home and enjoy your daughter.
But if she’s inconsolable, it could be hydrocephalus.
If she’s seizing, it could be hydrocephalus.
If there is fever and vomiting, it could be hydrocephalus.
If the soft spot in the head, the fontanelle, is bulging, it could be hydrocephalus.
Watch for it.
Wait for it.
Feel it from time to time to make sure it is still soft to the touch.
Go home and enjoy your daughter.
I go home and google “uncertainty is.” The search reveals the following answers in the top three: (1) “uncertainty is the essence of romance”; (2) “uncertainty is killing me”; (3) “uncertainty is the gateway to possibility.”
A positive choice. A negative choice. A hopeful one.
Waiting for Godot
In January 1953 in Paris, the French playwright Samuel Beckett debuted his play Waiting for Godot, a tragicomedy in two acts. Although critics have dissected its theme through the lenses of Freudian and Jungian psychology, post–World War II politics, Christianity, and existential philosophy, the play has always been, to my mind, most profound in its treatment of uncertainty. The two central characters, Vladimir and Estragon, of unknown age and background, foolish in many ways, sit around a tree on an empty stage waiting for someone by the name of Godot to arrive.
American scholars make much of the title and its religious undertones. Are Vladimir and Estragon waiting for a God that will never come? Beckett has stated that Godot does not mean “God”; in fact, he wrote the play in French, where “Godot” translates as “boot,” and “God” as “Dieu.” Translations aside, it seems unlikely that he wouldn’t have anticipated such interpretations, particularly since he translated his own work into English.
Beckett scholar Lois Gordon wrote in her book Reading Godot that “his poetry may have been unspeakably beautiful, but it stood as a testimony of human industry in the face of terror.” Indeed, uncertainty may exist in “the face of terror” because so much of it is often confused with the unknown. Though they do overlap, they are not always the same. Uncertainty is a fork in a river, while the unknown is the open sea. Uncertainty is a sliver of knowledge, while the unknown may be blissful ignorance. Knowing a hint of information can cause the terror of uncertainty to swell. Like the drop of blood in a Hitchcock film, the hint of gore is much more terrifying than a bucket of red paint (or no paint at all). It is the possibilities that creep into one’s subconscious, the glances of injury and illness that make us fear it. The “face of terror” is the reminder that we have seen just a little bit, but not everything. It is a plane crashing over the Indian Ocean without an explanation. It is the arbitrary selection of inherited disease. Of cancer. And unlike a heart attack—which, while horrifying, may be predicated by hardened arteries, heart disease, poor nutrition, or genetic predisposition—a brain hemorrhage on a healthy six-week-old has almost no clear etiology. It is this unknown source that leads to uncertainty and fear. Fear keeps us stoic in our countenance as if our feet are caught hardened in cement where the incident took place, immobilizing us.
By the end of the play, Vladimir realizes that movement is essential to destroy monotony and fear. “Astride of a grave and a difficult birth,” he says. “Down in the hole, lingeringly, the grave-digger puts on the forceps. We have time to grow old. The air is full of our cries. But habit is a great deadener.”
While waiting for answers, particularly answers that may never come or may come outside of our control, I have one foot in the grave and one in infancy, and if I continue in stagnation, if I continue in the “great deadener” of habit, I will lose time and lose much of myself. This is the struggle of hospitalization—stagnation and terror of waiting following discharge. Time is still as I wait for answers, but when I don’t know when those answers will come, I know that I cannot be stuck with one foot in the grave because that one foot will ground my entire body.
Sunsets
For weeks following Abby’s discharge, she stares ahead from time to time with a look of surprise. Her sclera, the whites of her eyes, covers nearly half of the opening of the eye socket on the top, while the bottom third comprises her iris, her pupil. Her irises are sitting so far down into her eye sockets that it seems as though a string is pulling them to her chin. She looks terrified and aware of her terror, bringing me back to Poe’s endlessly dark forest.
I want to take a photo of her expression for documentation but don’t want the flash accidentally going off, potentially causing another seizure. Maybe it is my constant photography that has caused all of this. I consider selling my camera equipment, giving up photography as a hobby. I tell her pediatrician about it, but she isn’t concerned, because Abby looks great on each of her visits. The white-eyed gaze returns only when she is placed in a more upright position like a car seat or a stroller.
I call my brother, who has been taking photos of her every time he sees her.
“Did you notice that weird eye thing today?” I ask him. He had just left my apartment to go home. “I could have sworn I saw you pushing her in the stroller and she was doing that weird eye thing while you were taking photos of her.”
I realize after I say this that I sound accusatory. I feel bad yet I don’t at all. I can’t own either sentiment. I want to accuse him yet I know he’s done nothing wrong.
“I’m sorry,” I quickly say to him. “I didn’t mean that you caused the weird eye thing. You know what I’m talking about. I just want evidence. I want to send a picture to Patricia.”
Patricia is my sister’s best friend from medical school and also, conveniently, a pediatric neurologist in New York. The gracious recipient of phone calls, pictures, and texts at all hours of the night for weeks, Patricia has become my savior, my own friend. I am acutely aware of this position of privilege, and I am endlessly grateful.
“Sasha?” I say, feeling the need to fill the space with words. I always feel the need to fill the space with words. “I keep describing the look, but nobody knows what I’m talking about,” I tell him.
I think I’m failing to properly describe it. He takes too long to respond to me.
“Oh,” he finally says. “I’m so sorry.”
“What?”
“I deleted those,” he says. “I didn’t want to look at them. I didn’t want to have them in my phone.”
I don’t reply. Abby looks back at me without the look.
A few hours later, as I stroll Abby around the neighborhood, her irises set downward like the sun, leaving a tremendous sky of whiteness for me to see. A vast atmosphere where anything could happen. Her eyes momentarily freeze in that position, and I take a photo. Five minutes later, I’m on the phone with Patricia, who tells me that they could be what is called “sunset eyes,” a symptom of hydrocephalus in infants. Though Abby’s do not fully present with such severity, she tells me that I should probably speak with her neurosurgeon about it.
A sun rising is an image of beauty. Oranges, crisp yellows, dark reds, sloshing together in a warm autumn palette. I know the scene well. I know its partner scene, too. The descending sun with a darker selection of cobalt blue and purple, charcoal gray. Every day I can count on it. It is and should be a symbol of movement, growth. What is noticeably stunning about a sunset is the arch of the star itself. The round sun partially hidden, half in slumber, half awake, until being put to sleep by the moon. A sunset lives a half-life; or, rather, it divides its time between day and night, lightness and darkness, life and death. A life cut short. The day turning to night, a sun hiding behind a hillside, a star losing its power, saying good-bye. Ending. A time-honored tradition of reliability, comfort, and now concern.
I thank Patricia for providing me with language. After all, language is what most people lack in medical crises. We become mute, unable to communicate without the proper vocabulary to express fact, detail, physical summaries. Having words with which to engage empowers me, despite the fact that it changes nothing in reality. I thank her for her willingness to speak with me with a kindness I wish most doctors have.
Days at the Salon
Abby and I visit the hospital every other week for cranial ultrasounds. In those dark rooms, she falls asleep nursing on my breast so that she is calm and still as the ultrasound technicians place warm gel on a soothing probe and massage the top of her head. We lie together for more minutes in silence while the technician finishes taking the images. We do this until six weeks have passed and it is time for her to go in for an MRI, where the images will be stronger and she’ll be seen by a neurosurgeon.
Because she is so young and her skull is not yet fully formed, we are lucky to have the opportunity to glance into the brain with an ultrasound probe. We are able to see beneath the skull because the fontanelle provides a temporary window into the brain. Fast forward a year and this would not be possible. The fontanelle closes by twelve to fifteen months. Another reason we should have answers within the next year or two—a short period in retrospect, but interminable in the moment.
Every other week, I reassure the ultrasound technicians that we know about the abnormalities they are finding with their gel-filled probes. Every other week, I watch with accepting eyes as the technicians taking images of Abby freeze before the screen, trying to mask their surprise of facts I already know. They don’t have Abby’s full medical history in the computer because we are at a different hospital, one that accepts our insurance. Every other week, I drive to the hospital for the cranial ultrasounds, and I slip into three new garments: parent, self-regulator, regulator of others.
I calm Abby as she breastfeeds still so that the ultrasound images can be taken with clarity.
I calm myself when I see the reaction of the ultrasound technicians to the images, knowing that they are seeing this for the first time. I know nothing new has happened, and yet I don’t. The two-headed beast leading me astray once again, my head and heart misdirecting each other.
I calm the ultrasound technicians, informing them that, yes, oh yes, we are on top of this thing. You don’t need to send us back to the emergency room right now. We know all about it. That’s why we’re here.
I call these visits our Days at the Salon. For the hours following the ultrasounds, Abby’s curls wind tightly on the top of her head like a rooster’s comb, and even she finds it funny. We create new hairstyles for hours afterward, playing with the ultrasound gel until six weeks pass and the first real glimpse into the future arrives.
Anesthesia
I’ve read other writers describe watching their children befall the mask of anesthesia. Life and then nothing. Consciousness and then its opposing force. In On Immunity, Eula Biss describes this disturbing performance as “a rehearsal of death.”
Seven weeks following discharge, we walk into a new hospital and sign forms again, carrying Abby into forced slumber. This time she is lucky to escape intubation and succumbs to only general anesthesia. No understanding of her own risks. The responsibility of making medical decisions for another person is a feeling that cannot be summarized into the single word, “responsibility.” It is at once a privilege, a matter of unnerving and unconditional love. I don’t know if Abby will be intubated again this time. I don’t know if the bleeding has stopped, no matter what the ultrasounds show. She’s not yet fully vaccinated. She’s too young, and her immunizations have been delayed several weeks because of her hospitalization. Airborne diseases glitter the hallways of the hospital in invisible design. I cover Abby with a breathable blanket. Amir holds her far away from the other patients.
“Only one parent can go in,” the nurses say as we carry Abby into the MRI room. Amir and I take turns, each invited into the process for just a brief moment.
I hold Abby and she smiles at me. She also smiles at the anesthesiologist. Her smiles are infectious and indiscriminating.
“She’ll just look like she’s sleeping,” he tells me.
It happens swiftly. There is no counting backward with an infant, so instead it’s just a little nursery rhyme singing her to sleep. Her immobility does not terrify me. It only makes me sad.
“All right, it’s done,” the anesthesiologist says to me.
“That’s it?”
“Pretty quick,” he says, rather proudly. “I’ll be here the whole time monitoring things, but it looks good. We’ll start now.”
I take that as my cue and begin to walk away until he stops me.
“You can say something to her,” he says.
I don’t understand. I had said “I love you” to her a million times that morning, but now I say it aloud into her ear as if this is the one that counts because they can hear it. It feels forced and awkward.
Minutes later, I sit in the waiting room. The information monitor tells me that x-rays were only thus named because scientists did not know the kind of radiation used to achieve the effect. “X” was meant to indicate the unknown. The name stuck.
I’m skeptical, so I look it up. In 1895 German scientist Wilhelm Conrad Röntgen discovered x-rays by accident while experimenting with a cathode ray tube and his wife’s hand. He realized that this particular type of ray would pass through human tissue, leaving metal (his wife’s wedding ring) and bone to be seen. Now we know that x-rays are electromagnetic radiation, but it’s easier to just call them “X.” It makes sense to rely on the known unknowns. It gives a sense of tradition, comfort. People seem to be comfortable with what we don’t know so long as it works. It’s often the moment something stops working that we question its source, its capability, its worth, and want to know why.
I say, I love you, Abby, quietly to myself every minute, my own form of silent prayer to Röntgen, to the anesthesiologist, to nothing and no one in particular, until we are called back, and she comes out of anesthesia successfully.
Waiting Rooms
I’m in the waiting room of the first neurosurgeon’s office about to find out the results from Abby’s first outpatient MRI. Well-decorated artwork stretches from floor to ceiling. We get free water with the logo of the office printed on the bottles.
It is hours after Abby has awakened from anesthesia. She is cranky but not terribly so. I wait for an extra hour. It’s OK. These are neurosurgeons. Pediatric neurosurgeons. Nothing I do will ever be as important—not in writing or in law. I wonder if other doctors feel impotent comparatively. Still, I know that this pediatric neurosurgeon is just a person. He is not a God. He’s a meticulously well-trained technician, and yet I wait for his answers the way a penitent stands outside a confessional hoping for absolution.
While I wait, the termites of guilt return. Hospitals are infested with them, as are waiting rooms.
We are called into his office and he tells us it doesn’t look good. He tells us that the ventricles have, indeed, expanded. It is mild, but still.
. . . still . . .
. . . but still . . . what?
My body hurts.
The tips of my fingernails.
The hair follicles on my scalp.
The pain around my cesarean incision, nearly healed, travels through my abdomen to my chest.
The neurosurgeon keeps talking, speaking about the images on the oversized screen on the wall where Abby’s scans are displayed.
“At least the fontanelle is soft and her head is measuring on the large end of normal,” he says. “It’s still within normal limits, but at the high end.”
Amir’s head is on the large end of normal. It’s his joke with his childhood friends. He has a big head. Maybe it’s just genetic and not hydrocephalus.
But the neurosurgeon discusses the possibilities for surgery. There are options and choices, though he does not provide them. Not yet, he says. Not until we need them.
She’ll probably need a shunt, but “I’ll give her just one more chance,” he says. “We’ll run another MRI in three months.” By then, he suspects, hydrocephalus will develop to a point that his hands will be tied. “My hands will be tied,” he says, deadpan, pantomiming handcuffs with a scalpel between his fingers.
• • •
A WEEK LATER WE VISIT a second neurosurgeon. I can’t tell the difference anymore between a minute and a week. I can only see my daughter smile and roll over and nurse and giggle. There is nothing noticeably abnormal at all. That’s got to be a sign.
It has been two months since our discharge from the NICCU, and I am still living in this sub-acute uncertainty, the space between. This appointment is for a second opinion, but truly it’s a first. This is the doctor who observed and treated Abby while she was hospitalized. The office is not fancy. It is academic. I trust this person. There is no logical basis for this trust, but I allow it to guide me.
I look around the waiting room and my heart stutters. Disney movies play on the TV. A small child’s table is placed before it. On the faces waiting beside me are sunset eyes and enlarged craniums. Brains floating in water. Hydrocephalus. I see buoyant eyes that no longer see the world through the prism of innocence. I see parents who are tired, exhausted, frustrated, fed up. Mothers who feel pregnant far beyond delivery. Fathers who are equally lost. Parents who look to their children, the television, the fish tank, and the ceiling in that order, over and over again. I am in the same place as these parents. We are here for the same reasons. Some of us may need a shunt placed, some may not. But we are all waiting together, refusing to speak to one another.
Moments later, I am waiting inside the examining room. It is beautiful outside. We are behind a large glass window, overlooking the Hollywood sign and the hills. Buildings speckle the landscape as colorful confetti. Inverse favelas. One neurosurgeon’s office perfumed with money, while the other with certificates. This one has seen Abby since day one, though, visited her in the hospital every day. This is the doctor who is well acquainted with her acute trauma and the uncertainty ailing us, who’s been following us as we monitor and test for hydrocephalus.
“Let’s repeat the MRI in another three months,” he says, agreeing with the first neurosurgeon, but less inclined to jump to surgery. He doesn’t think she’ll need a shunt and mentions nothing about his hands being tied, but does want to see what the scan shows again in three months before making decisions.
So we wait.
Statistics
I review those same statistics that dictate affiliations with injuries like this one. I lie in bed comatose. I stop washing my hair, my teeth. I nurse. I contemplate returning to full time legal work, despite my life’s goal of working as a writer, because there is more of a structured routine to it. I don’t know what maternity leave means to a writer. I’m trying to get back to a professional life. It’s been four months. I need work to put me into a semblance of routine. I reread the 20 percent chance mortality statistic online. I reread the 90 percent neurological damages statistic. They tell me words I understand intellectually. They inform me of what may happen because of this injury. I try to ignore statistics and learn what it means to go home and enjoy my baby. I hate that line. A dictate of emotion, futility embraced.
Fast and Slow
Daniel Kahneman is the 2002 winner of the Nobel Prize in Economic Sciences. Kahneman, a research psychologist and professor, worked extensively in the field of decision making in the face of uncertainty. Kahneman concluded that our minds are divided into two selves: System 1, which is “Fast Thinking” and System 2, which is “Slow Thinking.” Each system does its own work in helping us make decisions. System 1 is fast: our instinct, our intuition, our impulsive behavior, the things we say and do automatically. System 2 is in charge of self-control: it is slow, deliberate, and conscious.
Kahneman writes in his bestselling book Thinking Fast and Slow that “the conclusion is straightforward: self-control requires attention and effort. . . . One of the main functions of System 2 is to monitor and control thoughts and actions ‘suggested’ by System 1, allowing some to be expressed directly in behavior and suppressing or modifying others.”
It’s interesting to consider Kahneman’s two-system theory in the context of medical decision making. In the acute period of uncertainty, I had to think fast. Though I wasn’t consciously thinking about my actions, I still made decisions on instinct. I took videos. I consulted friends who may have more knowledge on the subject than me. I drove to the best ER for children that I could. I didn’t think about these decisions—I just followed my impulse to do whatever I could to help my daughter. That must have been my System 1 thinking in place: fast, impulsive, reactive. It may also have been my System 1 thinking regulated by years of System 2 analysis structuring how my System 1 fast thinking might materialize.
Once we arrived at the ER and were pulled back, it was less about my thinking and more about the doctors and nurses who had to think fast and rely on their instincts and training to make the right decisions. I wasn’t given many options at that point. I was not provided a list of decisions, each choice carrying separate consequences that could be weighed against the others. When my daughter was having a seizure, my System 1 made the fast-thinking decision to rush to a children’s ER to be seen immediately.
But that time is now over. I’m not thinking fast anymore. I am no longer running to the emergency room with a newborn, desperate for a quick fix. I’m thinking slowly. Slow-motion slowly. I’m waiting for things to develop or not to develop. I’m waiting for months to pass so that tests can be administered to monitor progress. I am waiting and watching for Abby to eventually hit milestones. It is slow. Dreadfully slow. And in this time I think, I analyze, I rethink moments and decisions made in the past and those I must make in the future with that System 2 mind. I fear derailment. I fear it daily whenever I watch her sleep, when I see her hiccup, when I see her rub her eyes, and when I hear her cry. I’m watching her grow, enjoying it and fearing it all the same. I’m waiting for results in between those tests, and, finally, I am given decisions to make.
In between each MRI and each appointment, I research Pediatric Neurosurgeon One at one institution. I research Pediatric Neurosurgeon Two at another institution. Both are stellar, sure. Both are exceptional minds and leaders in their field. But how do I choose which one to trust if surgery is required? And how do I decide what kind of surgery?
Let’s just wait and repeat this again in three months, I hear over and over again.
And in those three months between each MRI, I revisit these questions equally, testing one neurosurgeon’s opinion against another’s, one surgical option against another, trying to decide my daughter’s fate on logical conclusions. Or perhaps merely chance. Why do I trust one more than another? Why does anyone? Every three months when Abby is admitted to the hospital for an MRI, Amir and I must decide whether to listen to one over the other, as each three-month scan results in a new opinion, a new decision to be made at that time: surgery or not. If both agree, then we are comfortable. In doing so, we must be relying on System 2, which Kahneman says “is capable of reasoning, and it is cautious.” And if there is disagreement, we will get a third opinion until there is a comfortable consensus.
“You experience greater cognitive ease in perceiving a word you have seen earlier and it is this sense of ease that gives you the impression of familiarity,” writes Kahneman, pushing the analysis of these two systems further. The same I suspect is true in terms of relying on doctors. Though both are exceptional physicians, I’m so much more comfortable with the first neurosurgeon I see—not because he told me what I wanted to hear, but because he was the first doctor I relied upon in my time of crisis. I was familiar with him. The inherent trust was established because he was with me during my daughter’s acute medical crisis. This is apparently called the mere exposure effect, a phenomenon in which people develop a preference for things that are more familiar to them. It is instinct and intuition.
I don’t care what it’s called. I just feel trust.
It is not necessarily an irrational trust, though, but a gut instinct, created from an aggregate sensory life. Perhaps this is the two systems working together in this decision-making process. From experience, from years crafting my writing, from the practice of law, from years of studying people, from living near doctors, from carrying a child. There is a reason physicians become better with time. Experience helps their analysis with a mixture of concrete diagnostic help. The gut instinct helps the rest of the decision making, the action, the practice. This is clearly true for any profession, any identity. The same is true in patients when given time and knowledge with which to make a decision.
• • •
DAYS AFTER THE TWO NEUROSURGERY visits, I wait in another pediatric neurologist’s office. It is old and carries remnants of a different era of medicine. This doctor still takes her notes by hand. Behind her is a library of textbooks that must be out of date, and on the top of the bookshelves sits a collection of large wooden hourglasses.
I speak with the neurologist about possible prognoses for Abby. Her comments are neither negative nor positive. They are empty, without definition, without guidance. All she can state is what happened in the past. Her words are nothing I haven’t heard or worried about or googled or researched or discussed with other doctors before this visit, but she speaks to me—at me—as if I’m a trembling child, hearing this lack of clarity for the first time. I’ve heard it before. She tells me nothing about Abby’s future, apart from recommending physical and occupational therapy. She can’t see into the future. Nobody can.
I motion to the hourglasses behind her.
“Are those to indicate the tincture of time?” I ask. “That in neurology, our answers will come pretty much with time. We just have to wait for them.”
She laughs, raising an eyebrow in concert.
“No, those are for the kids to play with while I speak with their parents.”
I picture that phrase, “the tincture of time,” mummified in the past. A phrase recycled from that bygone era of medicine, where house visits populated the streets with aging doctors wearing white caps and carrying oblong leather bags. I envision old extracts, potions, and tinctures bottled into flasks and rebranded as remedies, traveling with old medicine men on long dusty roads to unnamed towns. A prescription of sand slipping through an hourglass. Time is all it will take to heal or find answers. Time and its tincture.
Faith
A friend of mine who is a scholar of Jewish history once said to me, “Doesn’t religion give people the illusion of certainty? Some sort of stabilizing framework?” Certainly it does. It can help individuals when no answers exist otherwise. It may be precisely that, though—an illusion. Yet does the lack of reality matter? If the illusion is helping someone cope, then it is real.
Religion is a type of faith—belief without concrete knowledge. It represents ideals and codes, guides for life. There is no mathematical law clearly presenting universal truths that one can accept with one hundred percent authority and certainty. Instead, religion offers its own heuristic that people can accept with one hundred percent faith. After all, faith—religion, specifically—is a collection of interpretations, which is why it is so exquisitely rife with conflict. Religion can be seen as the source of the greatest unknown. Yet it is the escape hole so many people visit while watching the “rehearsal of death,” or while waiting for test results, or when hoping for healing in a hospital. They pray. Friends send their “thoughts and prayers” in letters and messages and phone calls. Those suffering look up to a proverbial heaven, and often make deals with God.
God only gives you what you can handle, hears the patient or parent dealing with one medical ailment too many. For some, this phrase is arsenic, and for others, a guiding force.
Sophie is a colleague of one of my relatives. Following fertility struggles, she eventually became pregnant, and during her nineteen-week ultrasound, the doctors found a few abnormalities so extreme that they recommended termination. Deeply religious in the Christian faith, Sophie refused, and in time many of those problems resolved in utero. By the following ultrasound, Sophie felt that she was experiencing a miracle. “I knew God would intervene and heal these last issues soon,” she said.
Her son, Jay, was born one month premature. His kidneys began to fail, and he was placed on dialysis for eleven hours a day. At fifteen months, he became eligible for a kidney transplant, which Sophie’s husband provided. So far, Jay is doing well. He still has problems with his bladder, and eventually, in ten or fifteen years’ time, the transplanted kidney from his father will likely fail, at which point he will receive his mother’s extra kidney, provided the same health parameters from today remain in place.
I told Sophie about the Bake Sale and my fear of placing too much reliance on prayers to God. What if the outcome was not positive? What would that say about the quality of prayer? Of the person praying? Of God?
“God wouldn’t bring this child into the world if he didn’t think he’d be fine,” she told me, without pause. She didn’t need to address my concerns because, despite acknowledging that they exist, she didn’t share them. Sophie was raised in a religious environment. Her grandmother is the caretaker of a church. Her community knew what she was experiencing and prayed for her family, prayed for Jay. Religion was her comfort, her way of doing something.
Though “doctors are speculating,” she said to me, “God knows everything. He knew my child before he was born. If there’s a question about his health, why wouldn’t I ask the person who knows him best? . . . I know he has the answer.”
Sophie operates without doubt. An absolute belief in something intangible, something that to me feels unknown, unprovable, but to her is fully known with unwavering certainty.
Still, given my experience with the Bake Sale and after so many kind people sent their prayers my way, I was apprehensive to pray in case things did not materialize positively following prayer. For someone with a greater seal on faith, I wanted to know if hers would change if all those prayers did not work in her favor. If tragically the outcome had been different. If—
“If the worst happened,” she said, completing my words. “Then God thinks I can do more, handle more.”
In an instant, a comfort and ease overtook her. Her face softened, and she smiled. She didn’t question her faith. She didn’t look elsewhere. She was at peace, in a place of comfort and security in her faith, even if I did not see answers in the same place. It helped her—it helps her—which is all that matters.
This is not to say that either of our beliefs is completely irrational or rational; rather, that my constitution is simply not aligned with hers, or with that of others who rely on faith so passionately to help them cope with the uncertainties in life, medical or otherwise.
I speak with a rabbi about Sophie and the Bake Sale and the Jewish perspective. In response, he asks, “What happens when you drop a computer on a floor?”
I smile. Of course a rabbi would answer a question with a question.
“You cry,” I say. I’m a writer.
He laughs. “After you finish crying. What do you do? You press restart, don’t you?”
I nod, yes.
You are going to the source for help, he explains.
“The same is true for a child. A young child raised by omnipotent, beneficent parents, when dropped on the floor, rushes to his or her mom or dad, and wants comfort, help, support.”
That is the instinct, I say to him.
Parents are the restart button he is discussing. When adults press the restart button after a traumatic event, though, they often look to the only all-knowing type of parent that may be available—God. People project onto our parent who art in heaven, he tells me, echoing the well-known prayer to prove a point.
“We want to believe that there is a God driving the universe,” he says. “We want to know that there is no accident. No uncertainty. Maybe there is uncertainty for us, but not for God. For God, everything is settled, and so we look to God to give us the answer when we are sick or when our children are sick.”
I think back to the fact that I didn’t look to God during Abby’s hospitalization. In fact, I barely looked to my parents while she was in the hospital. I looked almost exclusively to those I thought were the demigods who wore white coats around me, and by the end of our stay, even they didn’t have the answers.
The rabbi tells me that the problem with the idealization of looking to a parent figure in this type of crisis is that it turns us into children. And this can only serve to keep us from moving forward because it is precisely the reverse direction of evolution, of growth. He tells me that, instead, we can look to the extraordinary people and events around us, to the angels walking among us. This is anything but rejecting religion, but rather seeking faith in our surroundings, in our everyday helpers, in our nurses and doctors, in our friends and family, in community, instead of relying on an unknown singular figure who may or may not be able to answer questions or provide miracles.
But if I am not looking to a singular comfort-giving framework in religion, is it still religion? Absolutely. It is faith, regardless of its source. It is finding it, as the rabbi tells me, in other parts of life where God may exist. That framework simply may not be a singular figure in a proverbial heaven for everyone.
Still, I am curious about religions outside of the Judeo-Christian helix.
An old colleague from Texas puts me in touch with an imam in Houston so that I can learn more about the Muslim perspective on the subject matter. Though many of his sentiments echo what I hear from Sophie and other Catholic and Muslim friends, it is powerful and resonant.
The imam tells me that if someone comes to the mosque looking for comfort, they can pray and comfort sick loved ones and remind them that “this is a trial from God.” Everything, he tells me, is the will of God. He tells me that so many of the prophets, indeed, went through serious health issues. They were constantly supplicating to God about their health, and as a result, God responded to their prayers.
He tells me that there are verses in the Koran that teach you that if there is a fever, it is actually a cleansing of sin, and that there are others that indicate that if you die of certain illnesses, you are considered a martyr in the eyes of God. Fever, a cleansing of sin, the knowledge that something is wrong within the body, has long been a truth paramount to both religion and medicine, hearkening back to Hippocrates’s proposed theories.
And yet, there is hope, he tells me.
“There are certain things we cannot know,” he says. “But there is always hope, as well. That’s what religion is. Hope to be a better person. Put our faith in the hands of God. Even if we lose everything, we have this hope that God will not waste our efforts. And it will always be paid back then in the life hereafter.”
Hinduism is fueled by a belief in reincarnation, that an individual’s soul is reborn in a new physical body time after time in an ongoing cycle of rebirth until that soul reaches a state of perfection and evolution. It does this through karma, which literally means “action” or “deed.” Karma is a cause-and-effect paradigm, in which effects of good and bad deeds are returned to the soul in a future life. With an ongoing life, a renascent soul, these larger philosophical questions inevitably change. The uncertainty that a person faces perhaps may be less about what happens to the physical body, and as a result, less about the medical portion of it. After all, the physical body is what is treated in medicine.
The concept of reincarnation fascinates me. Its tenets return to a duality in nature. Hinduism retains a belief in many gods, yet still one supreme being. It is at once a monotheistic and polytheistic religion, with millions of deities that are individually interpreted versions of the supreme Brahman. Each deity is projected to serve an individual purpose. For example, the Indian goddess Durga, one of the most powerful deities in Hinduism, is a woman depicted in many books and films as a fierce warrior. She is drawn often with eight or more arms, and she battles evil and emerges triumphantly. Her tales are written widely, and it is said that upon hearing the stories of Durga, one is cleansed from sin. Perhaps one is cleansed from injury and illness, too.
I have seen the image of Durga over the years, and she has always intrigued me. Each arm—be it eight, six, or eighteen (also a mystical number to the Jewish faith)—carries with it another symbol. One of strength, femininity, power. Somewhere to turn when in need, in times of the unknown. Whether Hindu, Jewish, Christian, Muslim, agnostic, or atheist, or any other faith, we all need symbols like Durga, even symbols like the Bake Sale, which can help when an express faith in a specific God is overwhelming, ambiguous, nonexistent, or variable across cultures.
• • •
WHILE WAITING BETWEEN THOSE TWO MRIs, the three months in which hydrocephalus would worsen or would not, in which brain surgery would be the outcome or would not, part of me wants to have Sophie’s faith. That unflinching, relentless knowledge that all will be well. I don’t want to hear anyone tell me that, though. I don’t want to hear people recite stories of their sick relatives who turned out fine because I don’t know if it will apply to me. They can’t know either. The illusion of certainty, though attractive, is merely that for me: artifice.
While Abby was sick in the hospital, I did not pray. I did not rely on faith. But neither did I relinquish it. I did not forcefully remove it from my own life. I simply accepted it if present, neither welcoming nor excluding it, by placing the little rabbinical card in Abby’s crib or reluctantly participating in the Bake Sale or speaking to the rabbi. Perhaps that is a form of faith on its own. After all, Abby’s fever broke the night of the Bake Sale, and we were discharged two days later. Family members with whom I spoke months later told me that when braiding the challah, they felt as though they were a part of something bigger than themselves.
Waiting
I am in the waiting room before Abby’s second outpatient MRI. Because this is Los Angeles, I see a famous pop singer dressed in what I can only imagine is “pop singer conservative wear.” A white suit, covering her skin from head to toe, an oversized hat in matching material, painfully high heels. The pop singer is alone in the corner trying to stay anonymous. I don’t like many pop stars, but I’ve always liked this one. I listen to her music. I’ve bought her albums. I sit far away and try not to look. She wants to stay quiet. I think she’s in for a brain bleed, too. Everyone’s in for a brain bleed, I assume. Everyone’s in for a scan of the head, as if there is no other need for an MRI. Other people in the waiting room ogle her, and I can tell she’s trying kindly to retain her sense of self, her composure. So private an experience played out so publicly.
Abby is placed under anesthesia once again. This is the test that will determine whether she needs brain surgery. This is the image that will untie the neurosurgeon’s hands. It is slightly less difficult to watch than the previous time. She fights the anesthesiologist a little more, and again does not need intubation. She comes out of it fine.
This time, though, I must wait days for the results. I can’t even remember how many because the hours rush together, yet the time is both blaring and burning on my calendar. I want it to come and I want it never to come. I want an answer, but I don’t want that answer.
When the date of the appointment arrives, I place Abby in her car seat and drive around in circles for forty-five minutes before heading toward the hospital. I am looking for a McDonald’s because I need french fries. My body craves the salt. I finally find one and sit in my car for less than two minutes until they are all finished. I crumple the white and yellow paper bag and toss it in the corner of the passenger seat. I drive toward the hospital. I am early. Instead of waiting in that room again, I drive another twenty minutes to find a second McDonald’s, where again I sit in my car and eat the second large helping of fries. I don’t care that my body is swelling from sodium or trans fats or cellulite. The salt satiates me. I need it.
The fries taste so good, I consider getting a third helping. I don’t want to drive back to the doctor’s office. But my phone buzzes. Neurosurgery appointment, it says. In fifteen minutes.
I pull my hair back and feel a knot at the base of my hairline. I ignore it, tying a band around it. I drive back to the hospital, park my car, and meet up with Amir. An hour later, we are called back for our appointment. This doctor is the one who gave the more promising second opinion about Abby’s surgical prognosis.
The neurosurgeon attending and fellow begin to explain the latest results. They seem short with us, as if they have other places to be, but nowhere more important than here at the same time. It seems a cognitively dissonant reception. If the surgeon shows little professional interest in a case, it will likely mean that is only because there is no surgery to be ordered. That is something we want. The look of banality in his eyes. The quick rounding of Abby, signing off on the note in a few minutes’ time. An uninterested surgeon is a welcome surgeon, Amir and I say silently to each other: a remnant of the last few years while waiting for his neurosurgeon to explain away the roller coaster headache.
“Things have stabilized,” the neurosurgeon says. “We won’t need to place a shunt based on these images and how she’s doing now.”
He points to the images that are exactly like the ones from three months earlier.
“That’s an indication that she’ll continue to do well. I think you could be out in the clear in a year. Maybe two. We’ll just watch it.”
I hold Abby. I hold her tightly to my chest and I kiss her forehead and her ears and her hair and her eyes. I try to see myself in them. I never realized how almond my own eyes are until giving birth to Abby. Average in size, they come together on the outer edges like two swoops of a slide. The only difference is that hers are a crystalline blue, taken from my paternal grandmother, a survivor of Auschwitz, after whom she’s partially named. “The eyes, the eyes,” people say, when they look at the two of us together. It took me thirty-five years to realize how I really look.
The neurosurgeon tells us that Abby does not need surgery now, but that they’ll repeat the MRI in another three months. Another three months of waiting, flattened with each passing test. A fully blown balloon losing air with every season. Eventually, that balloon will lie flush, airless, no longer floating above our heads as a reminder.
This neurosurgeon is the ambulatory encyclopedia I imagined all doctors to be when I was ten years old. So is his protégée, the neurosurgery fellow we met in the hospital months earlier. They both speak to me and Amir with respect.
“People can live normal lives with literally half a brain,” the fellow tells me. “We’ve done hemispherectomies before.”
“Really?” I say, amazed at the science. “Is that what we are looking at, though?”
“No,” she says, nodding. Not even a little bit.
If this is her attempt at calming us, I could give her a handful of other suggestions. And yet I’m divided. I know she’s trying.
The salt from the french fries slips out of my underarms and speckles under my breasts.
“No surgery,” I say calmly, taking it in. I’m still not overjoyed. This doesn’t mean never. It means not right now. We’ll need to redo all this again in three months.
“And we still don’t know why this happened?” I ask.
“It was probably an AVM,” they both say, “but we can’t know for sure. Either it was and it burst, or it was something else.”
I am starting to hear that phrase a lot from specialists we’ve visited over the weeks. Neurosurgeons. Neurologists. Hematologists. Ophthalmologists. Pediatricians.
An arteriovenous malformation. A fancy sibling of the aneurism, an AVM is a malformed collection of veins and arteries that can cluster and either lie dormant or burst, causing a potentially catastrophic bleed.
We nod.
“Yes, it’s possible,” they say.
“Probable, in fact,” they say.
“But we can’t know for sure,” they say. “Let’s look and see if we find any other AVMs in the scans,” they say.
Amir and I listen and nod. We’ve been told that this is another reason we keep having MRIs every three months. Not only to monitor for hydrocephalus, but also to look around and see if they can find any AVMs sitting there like grenades, and if they do, then they can do something about it early on. Go in and clip it or embolize it before it bursts. So far they haven’t found any (other) AVMs in there, but they keep searching. They discuss the small possibility of having Abby undergo an angiogram, a much more dangerous procedure on such a small child, but one that would offer a more complete picture of the brain. It is not recommended at this point. It is far too dangerous for her, particularly when there is nothing clearly indicating that there may be (other) AVMs. So the question will again be posed in another three months.
I walk out of the office with Amir, and we get back into the car as if nothing new is learned. We sit in the car silently, staring at the parking lot attendant a hundred feet before us. I smile. Amir’s head drops to his headrest and he looks up. I place my hand out and Amir grabs it. We look back to Abby. She is near slumber. Contentment pours through us in the nothingness that is today, the banality of stability.
I don’t cry. I play with the knot at the base of my hair. My necklace latch is stuck in it. It pulls at my scalp like the back of my head is fastened onto a meat hook. I don’t bother to remove it.
Another three months of waiting.
• • •
HOURS LATER AT HOME, I google “hemispherectomy” and see a story on YouTube about it. The headline: MEET THE GIRL WITH HALF A BRAIN. Before reading the article or seeing the video, it already feels misleading, sensationalized. I watch a little girl of perhaps eight chat with poise and maturity as she sits in front of Ann Curry on the Today show’s couch telling her extraordinary story. She is friendly and happy and beautiful and thriving. They run a story about her severe seizure disorder called Rasmussen’s syndrome, and suggest that removing nearly half of her brain may have been the only option for a functional life. When she was experiencing up to ten violent seizures a day, her quality of life was poor. The removal of half of her brain was a preferable prognosis to this one, and so her parents agreed, relying on the ever-hopeful phenomenon of neuroplasticity at such a young age.
Doctors at Johns Hopkins surgically removed most of the right hemisphere of her brain when she was six, and she woke up paralyzed on the left side of her body. Within days, she was in physical therapy, and within months, she was walking and running and playing and speaking.
Her father is interviewed. “I truly believe that miracles happen, and my daughter is an example of that,” he says.
Experts discuss the phenomenon of neuroplasticity, and the little girl speaks intelligently about it. She wants to be a ballerina. She will likely walk with a limp and not regain full control of her hand, but still she is walking and dancing and using her hands, and nobody is telling her that ballet is not possible now.
I continue googling. Another young boy had a hemispherectomy for similar reasons, and now he’s playing sports and running around his regular school with his little brother living a normal life.
The key factor is their age, their youth.
I don’t know if these stories provide me with comfort. I consider calling up the families to speak with them, but they don’t want to hear from me. Our story is nothing. A two-week NICCU stay with no surgery thus far. A fever. To them, we are a scrape on the knee. To other families I meet in our everyday lives, we are the hemispherectomy.
I am starting to feel grateful for being nothing.
But we still have another MRI ahead. We still need to wait for Abby to hit her milestones, and the ones that come after that and the ones that come after that.
Amir says he could have figured out what happened to her if he had a full brain, if the cyst wasn’t in there supplanting part of it. After all, his arachnoid brain cyst had only recently been discovered, despite forty years of latency.
He laughs. I only sort of laugh. I wait.
I feel the knot at the base of my hairline. By the time Abby goes through three MRIs and three additional neurosurgical visits with two different doctors and is well into her physical therapy, I cannot ignore the knot anymore. It’s a full-grown dreadlock.
I joke with my friends, inserting it into conversation as if it’s all part of the new mom thing, trying to feel normal, like one of them. “You know,” I say, “the new mom thing where you don’t have time to shower or whatever so you develop dreadlocks.”
They look at me and laugh.
“That’s not a thing.”
I chop seven inches from my hair.
Control
A friend of mine from college is a public health researcher for a think tank whose work centers on, among many issues, public health emergency preparedness. She tells me that her world is reactive. In public health, it’s about giving people a choice and then persuading them to act on it. For example, each year the new flu vaccine is released based on studies of the previous years of flu strains and the best possible guess for which strain will be prevalent that year. It’s not possible to attack every strain of the flu in the annual immunization, but the goal is to attack the largest and most populous strains expected. Still the flu vaccine is a measure of real control. Though reactive, health professionals are still actively taking control as much as possible given countless variables.
The reality is that public health professionals who make decisions for the mass population often have to act in the absence of information. They sometimes must wait for something to occur in order to fully prepare for the next crisis. Inaction is a type of action, yet paradoxically, it is terrifying to live in a world where you cannot necessarily prevent future catastrophes. You have to wait for them to happen in order to prepare for the next.
Our bodies, our psyches, are also reactive. Once we get the chicken pox, for example, we can work on not getting it again. Our immunity builds. Once there is an injury, we cannot turn back time. We can only prepare for the next one.
Guilt v. Blame
My father, a physician who consistently defends the physician’s perspective, calls to give me his opinion that the initial hospital we visited should not have allowed Abby to go home that first time, when my brother and I brought her into the ER for pyloric stenosis. Similarly, many of my attorney friends come calling with their respective “Tell me when!” calls to action. I even heard that one of the neurosurgeons we visited was also surprised that the first ER let Abby go home at the time. I don’t want to think about this. It’s too soon. It doesn’t matter. It doesn’t change anything. But still the texts spill in.
Most physicians are sued at least once before they hit the age of forty. This is not necessarily due to actual malpractice, but rather to the inherent complexity of the work. Mistakes can sometimes be made without intent and even without the possibility of prevention. When something goes wrong, there is almost always guilt. And when lawsuits arise, blame becomes the guiding force to operate on that guilt.
When I was eighteen, my father was sued for medical malpractice for a case that proved blameless in nearly every capacity. Accordingly, not a single attorney took on the case, let alone ruled against my father, but nevertheless, because of that lawsuit, the hospital where my father worked took away his privileges to practice medicine. With a loss of identity, livelihood, decades of training, and limited funds, my father decided to sue the hospital to right his own wrong, displacing the blame in order to get his name, reputation, and livelihood back, and it was this lawsuit—not its source—that devastated our family financially and in many ways, personally. We lost our home and bank accounts—of course, incomparable losses to what other families lose in legitimate malpractice cases. Yet because of this, I learned at an early age that lawsuits are based not always on guilt, but on blame. When blame is not easy to spot, they are filed because of the need to learn the full story. After years, my father was eventually able to move past the lawsuit and continue practicing the medicine he loved so dearly. He found new hospitals in which to work, additional outlets beyond general surgery to help others, discovered a joy in working in small-town emergency rooms in need across Texas, and embraced a renewed sense of purpose despite the outward bruises.
Nevertheless, this conceit crystallized in early 2012 when I moved to Los Angeles and took a job as a medical malpractice defense attorney at a midsize law firm. That one year alone decimated thirty-three years of complete trust in the medical establishment as my everyday focus became the exception to the medical norm. The infinitesimal percentage of things going wrong became the one hundred percent focus of my daily life. I saw lawsuits flying in where no fault could possibly be found. I saw families drained and mourning as they longed for answers. I saw physicians devastated by split-second decisions that they believed were right at the time. I did also see malpractice, actual wrongdoing on the part of institutions and physicians where blame and guilt properly belonged, but this was far less common than the undeniable sadness of both parties wishing their time was spent anywhere but with us. I worked on cases that re-created fear of medicine, hospitals, and surgeries where my childhood mantra of “just an appendectomy, no big deal” was so deeply entrenched.
One case remains with me, years later. The defendant: a young man working as an anesthesiologist, happily married. His wife is pregnant with their first child, and a few weeks after giving birth, he returns to his work. He is scheduled to perform anesthesia on a case for an elective surgery. He goes into work as he has for years. Sure, he had been dizzy for weeks by the time of this particular surgery, but that is because he is a new parent. This change in temperament, this sleeplessness, all comes with the territory of new parenthood. Given his work, it is vital that he sleeps sufficiently, that he does not come to work exhausted. The slightest movement in the wrong direction could result in catastrophe.
There is another young man—kindhearted, eager to start his own business, a devoted husband and father. He elects to have surgery to combat his battles with obesity. Though it’s usually a straightforward operation, this surgery still carries with it risks and complications, as do all surgeries. He signs waivers, is prepped, and looks forward to a better future professionally and personally.
The anesthesiologist begins to administer the anesthetic. Though a bit more exhausted and dizzy than usual, he is well trained to perform his job. He has performed this work hundreds of times and under far more stringent conditions than exhaustion.
This time, though, the anesthesiologist places a tube in the wrong anatomical airway, and as a result, the patient can’t breathe. Numbers are flying in the wrong direction on the monitors, but not everyone catches the numerical anomaly in time. There is a lack of oxygen in the patient’s brain for a period of time. The doctor doesn’t quite catch the numbers slipping. He isn’t communicating properly with his team, with the surgeon, with the nurses. The surgeon tries to help; he struggles to get oxygen to the patient, but it is too late. For that brief moment while the patient loses oxygen, he suffers anoxic brain injury. He is placed in a coma, and his future becomes unknown.
And yet the story, like all stories, is not that clear.
The doctor never comes home after the surgery. Following the mistake in the OR, the anesthesiologist realizes something must be very wrong, so instead of going home after the operation, he visits a doctor and discovers that it isn’t new parent exhaustion causing his slip of the hand, but rather that he has been unknowingly suffering from a brain tumor. He spends the rest of his life in treatment centers, operating tables, doctors’ offices, chemotherapy suites, and hospital beds.
The patient lives, and the family is able to focus on his recovery. In this time, he regains consciousness and with extensive rehabilitation, is able to learn how to walk and talk again, though never as well as before. While his condition does improve daily, he is disabled, requires home health workers, and loses a substantial amount of his future livelihood.
The anesthesiologist dies just over a year later, leaving behind his wife and new baby. The patient later sues the dead doctor’s estate for malpractice.
Did the anesthesiologist make a mistake? Yes. But could he be ethically blamed? It is unlikely. There are no winners, no exculpatory individuals in this case, only people understandably looking for answers. Even in a potentially clear-cut case of malpractice like this one, where blame may be discernible, there still may be guiltless parties. How do we accept this reality when we need to make sense of an event catastrophic to so many lives?
Intellectually, I know things can go wrong in medicine, but even when they do, it is hard to accept that often nobody is at fault morally. Unlike criminal cases, medical malpractice cases present a window into an often blameless system of fault. And when that happens, what do we do with guilt? We turn it inward. Blame, though, somehow shifts the angle outward. It needs a scapegoat. It tells itself that it needs the law. In some cases, it absolutely does. But in most, the law is a poor substitute for closure.
I saw people—both patients and physicians—lose their livelihoods, their lives, their minds, all seeking one thing: exculpation in the narrative of litigation. Deeply, passionately, desperately seeking someone on a pedestal with a gavel, saying “guilty” to someone other than themselves.
I saw my father do it in my childhood for years as the arguments with my mother escalated and the numbers in their bank account dwindled. Until all of their children left home and tried to move past this “fourth child,” this lawsuit that served as nothing more than a need to place certainty in a world where there is none.
It didn’t take long in my practice of law to realize that the main reason people sue is not for money, but for answers. True, there is a hefty group of individuals who sue purely for money, perhaps motivated by revenge or greed or often the necessity to pay bills, but tainting all of it is the need for answers. For discovery of truth, discovery of life. The early process in litigation is literally called “discovery”; it is a means by which people can investigate the truth about their injuries and health crises and find someone to blame, find a culpable party that is hopefully anyone but themselves. Often they do not find a clear and objective answer, and with no answer there is no certainty. This reality is one of the only truths: that sometimes there is simply nothing and no one to blame.
A cruel revelation for an attorney.
A beautiful one for a writer.
A necessary one for a parent or patient.
• • •
I NEVER RESPOND TO MY friends about suing. I explain the reality to my family, completing the legal analysis in my head in between medical assumptions. In law, there is a fairly clear formula for determining liability in negligence cases. Duty. Breach of Duty. Causation. Damages: All four elements must be met. It’s as simple as that, no matter how complicated attorneys make it out to be. Even if there was a negligent breach of duty somewhere along the line, there is no connecting causation here. Nothing to prove. Nobody to blame, and as time passes, perhaps no real damages either. No way to connect the dots conclusively or even beyond the preponderance of the evidence. Nobody at whom to point the finger saying, It’s your fault. Not even to myself. I have no answers to find. No blame to misplace. Money will not “make Abby whole,” the presumptive language for monetary awards in civil lawsuits. She’s already whole as she is. As am I.
Graduation
After five MRIs and countless visits to specialists and Days at the Salon, we are again in the second-opinion neurosurgeon’s office with the same Disney movie playing from three, six, and nine months earlier.
The last few results have been good. Stability. The proverbial prayer for an uninterested surgeon.
The neurosurgery fellow is the first to speak. I ask her about all the potential long-term effects of a bleed of this gravity. Now that hydro seems less likely and neurosurgery visits are waning, I’m starting to think more about the neurological component, the long-term effects that have no solution with a scalpel. Google and the Mayo Clinic and Cleveland Clinic and Medscape and Medline and the NIH all tell me online of possible outcomes following a Grade IV bleed. All of these statistics associated with this range of outcome have guided me in and out of sleepless nights, holding my child close to my heart. But they aren’t examining her; you are, I want to say to the neurosurgeon, before she cuts me off.
“You would have seen by now if there were those kinds of neurological problems,” she says, practically laughing at the normal baby smiling and cooing before her. Abby, potentially escaping all of their statistical dictates.
Treat the patient, not the paper, I often think when I reload pages on the Internet. A modern derivation of Hippocrates’s words: “It is more important to know what sort of person has a disease than to know what sort of disease a person has.”
“Abby looks just great,” she says. “Continue what you’re doing.”
We’ve heard that before. She does look great. But I want to know what may happen in the future. Will great sink to good and then average and then poor?
“And . . . she still may need a shunt?” I ask.
They smile.
What about the future? I want to know.
They never say a thing. She looks great, they remind me. They aren’t going to give me a prognosis just because I want one. But—
“Don’t quote me on this,” the neurosurgeon says to us kindly, “but you’ve graduated from neurosurgery.”
I think he says something more about this. Perhaps something along the lines of not needing to return, of Abby being in great shape, of a great nonsurgical result. I hold Abby in my arms tightly as he speaks, and the apprehension turns to joy, which turns to complacency, which turns to normalcy in the span of a second. I am holding Abby exactly as I held her minutes earlier. Nothing in those moments has changed. She is the same person she was before he graduated her. There is no thick metallic door out of which he has come wearing green scrubs and latex gloves, telling me she survived. There is no test she just took out of which she emerged triumphantly. Just a simple office visit in which nothing in our lives changed.
Amir wants to hold her, so I pass her to him, but again we do not embrace with relief. We do not sigh. We do not cry. We do nothing but complete the conversation as if it is just another doctor’s visit continuing life in the same exact pattern. Only now she does not need neurosurgery and will not need another MRI in three months. Merely a one-year follow-up. We have graduated, but not completely.
When each visit presents the same result, the final disclosure isn’t earth shattering. It is just a continuation of the same. With each subsequent MRI showing unchanged ventricle size, we sort of expect to pass the test. It feels like relief and satisfaction of hunger. The removal of a splinter. The first step dipping my feet into a pool. I can tell the water is warm, but I’m not entirely certain how I’ll feel when I dive in.
We are in the neurosurgeon’s office for less than ten minutes. It’s as simple a visit as a checkup for a cough. We never see him again.
• • •
I SHOULD BE MORE OVERWHELMED with her surgical graduation given all of this, but the cognitive dissonance of the surgeon’s words still rests peacefully over my head as if I have lost my ability to emote. As if my heart and head have lost the tubing between them.
I have not lost their connection, though. This I know. It is now cautious. It is rebuilding with small moments, just like a baby learning how to walk. My head connects with my heart outside of the surgeon’s office when I see her at home, taking those proverbial steps and embracing milestones.
The four plates of her skull are now closed, fused together properly as they should at this age. But still, I touch her closed fontanelle out of habit, testing, feeling for a potential bulge.
• • •
WITHOUT THE IMMINENT FEAR OF surgery, without hydrocephalus, without semi-weekly head measurements or frequent visits to ENT to test her hearing or vision, we are welcomed into nothing more than parenthood.
I run that same Google search of “uncertainty is” again, and it reveals the following: (1) “uncertainty is the normal state”; (2) “uncertainty is the essence of romance”; (3) “uncertainty is the refuge of hope”; and (4) “uncertainty is killing me.”
The positive and the negative are still there.
Possibility and finitude.
Romance and death.
Abby is almost one year old. One of the two neurosurgeons still suggests a one-year follow-up just to be absolutely sure.
She is talking but not yet walking.
I’ll feel better when she walks.