By Phyllis Beckman

Wider than the Sky

True Story, Issue #06

One small observation over dinner—a husband’s dilated pupil—upends a young couple’s expectations for their life together and reveals how incredibly fragile our identities are. In this story of love and loss, Phyllis Beckman explores the ways the complex, adaptable structures of the brain can react to trauma and ultimately the question, What makes you you?

The Brain—is wider than the Sky—
For—put them side by side—
The one the other will contain
With ease—and You—beside—

Emily Dickinson

The human brain weighs approximately three pounds, resembles nothing so much as a shelled walnut, and is the texture, one neurosurgeon tells us, of soft tofu. Removed from your skull, it becomes a ridiculous thing, a jokey Jell-O mold, a blancmange on a plate. Yet this Silly Putty cluster of cells contains everything you are. Here dwells each tender memory and each dark, secret longing divulged to no one. Here is the landscape of your life, its memorials and milestones, relics and remains. This is where you reside.

Go ahead, poke it with your finger; it will feel no pain, for it has no pain receptors. What it does have is neurons, nerve cells devoted entirely to receiving and communicating information. And it has lots of them—one hundred billion, we are told.

Each neuron consists of a cell body, an axon, and dendrites. The axon is a long fiber that carries information away from the cell body in the form of electrochemical impulses that travel the length of the axon. Dendrites are tentacle-like structures that function as antennae, searching for the voices of other neurons. These dendrites (from the Greek word for tree) diverge repeatedly, becoming finer and more delicate, forming what scientists call the dendritic arbor, a forest in the brain.

Neurons exist to communicate, to connect. During fetal development, they must quickly assemble themselves into a complex network, scrambling and desperately seeking their proper place. Not all are successful, not all can make a connection, and they wither and die.

The place where delicate neuronal appendages finally reach each other—offering up their secrets, telling their stories—is called a synapse. So hungry are neurons for communion that each may complete up to ten thousand synapses, resulting in one hundred trillion total in the brain. They meet but never quite touch, always separated by the tiniest space, a mere one millionth of an inch. So much yearning for connection. Who knew so tiny a space could contain so much longing.

• • •

One summer evening, when time is flowing, so easy, in an adagio tempo, the tempo of a calm, beating heart, the sun is shining through the dining room window of our suburban house. This house is a point of contention. My husband and I have recently relocated to this large Midwestern city for his new job. I considered it an opportunity for adventure and advocated for the purchase of a mid-century modern home with glass walls fronting an interior courtyard, affordable for us only because it needed work. His capacity for change already taxed by the new job, my husband dug in his heels, and we bought this standard-issue seventies house, which, for some reason, reminds him of our old house. He likes the familiar. We are still working to make it feel like home.

We are eating dinner. The menu is washed from memory, but because it is summer, let’s assume we are eating something my husband has cooked on the grill—maybe beef kebobs. I marinated the beef along with pieces of onion, yellow bell pepper, and whole cherry tomatoes, and I carefully arranged these ingredients on metal skewers, alternating colors. I placed these skewers on a platter and handed them to my husband, and he carried them to the patio to cook them on the grill.

He likes doing this. He likes cleaning the grill with a stiff brush, building a new fire with a carefully composed pyramid of charcoal. He smokes a cigarette while he watches the food, proud of his cooking prowess.

Although not much of a cook himself, he has adopted for himself the title of sous chef. He cheerfully chops vegetables and boils water for pasta, all the while performing an exceedingly poor—but enthusiastic—imitation of Dan Aykroyd imitating Julia Child. Pasta must be cooked “to the tooth,” he warbles.

 I serve the kebobs with brown rice, a green salad, and an inexpensive red wine we will describe as pensive yet perky. While we eat, our cat lounges on a nearby chair, doing a bit of grooming, digesting her own dinner. Music plays softly in the background—I will say it is Marian McPartland playing “Willow Creek,” with a rhythm as easy as that of time itself. In the family room, a videotape is already inserted in the VCR, a selection for our version of classic movie night. On a typical night, I might select Laura, a romantic film noir from the forties. My husband will counter with Attack of the Killer Tomatoes!, defending its place in the canon of classic films. We will compromise on Starman, a fine tale of science fiction, at its heart a love story. This perfect scene of distilled domesticity—a painting, perhaps, by Norman Rockwell—might seem sentimental. Yet this is our life; this is us living a life.

My husband looks up at the window, and a ray of sunlight catches his face, forcing me to notice something. I hear myself say to him, “Your left pupil is dilated.” He makes a scoffing noise and continues eating. “Look at me,” I say, with a sharpness that surprises me. He turns his head and looks directly at me, opening his eyes wide, as if for an examination, clowning a bit. His eyes are mocking, amused, but tinged with something else. Time makes itself known, now—condensing, becoming heavy and sluggish, changing its tempo to grave. Serious.

• • •

The brain works hard to track time, so important is it to our survival. There are groups of neurons that measure milliseconds and areas of the brain that organize memories over decades.

Moments of strong emotion can skew our perception of time. Neuroscientists would say that what happened that summer evening, when I felt time become sluggish and slow, was that the image of my husband’s dilated pupil elicited an immediate response in my subconscious brain. The recognition of possible danger caused my amygdala—two almond-shaped clusters of neurons deep in my brain, which some call the watchdog—to exert its influence, telling the rest of the brain, Pay attention! This is important!

In response, the other areas of my brain began collecting detailed sensory information, laying down richly detailed memory. The more detailed the memory, the longer time seems to have lasted, scientists say. An illusion, they tell us. Yet that instant of time—one second, two—is like a musical note marked by a fermata, sustained, suspended. And, like Alice falling slowly, slowly down that well to Wonderland, I have plenty of time to think about what will happen next.

• • •

“Come on,” I say. I grab a small flashlight from the kitchen drawer, and we go to the powder room off the front hall. It has no windows and will provide the darkness I need. He lowers the toilet lid and sits. I close the door and turn off the light, the narrow beam from my flashlight the only illumination.

Stalling, I check his right pupil first. I shine the light in the eye and flick it away, repeating this gesture several times. The circular muscle of the iris contracts, closing the aperture, protecting the retina from the light. A precise, elegant movement, a tiny thing, delicate—like a sea anemone retreating from danger. I move to inspect his other eye, but he says, “Wait, wait!” He closes his left eye firmly, just for two seconds, willing it, I think, to perform, then opens it for my inspection. And in that brief moment, that blink of an eye, everything changes.

• • •

Love resides, not in the human heart, but in the ventral tegmental area of the brain, the VTA, a group of neurons deep in an area scientists have called our reptilian core. It is one of the areas of the brain associated with craving, with focus. It is here where longing begins. During early, romantic love, this area fires intensely, while other areas of the brain, those that contribute to fearful skepticism and judgment, are subdued, making us gullible and sometimes irrational. Lovesick. When the object of our attention returns our feeling, the reward circuit of the brain is completed, and the VTA releases surges of dopamine, which travel to other parts of the brain, producing intense sensations of pleasure.

When our love is not returned, the VTA continues to throb but is never satisfied. The result is pain. As the brain cannot feel this pain of its own producing, it delegates this obligation to the heart, sending a signal down the vagus nerve from the brainstem to the chest. The heart accepts this burden willingly; it is so adept at aching.

• • •

My husband calls his physician the next day. We both have enough medical training to know there are few good reasons for a dilated pupil. He is scheduled for an MRI almost immediately. Time is moving faster now, allegretto, briskly, an efficient pace moving relentlessly toward something. Just seconds later, it seems, we meet with a neurologist and his resident in his office near the hospital. It is 8 a.m. on a gray Saturday.

The neurologist places my husband’s films in the lightbox viewer, flips on the switch, and reveals to us a secret that has concealed itself for all the forty-one years of my husband’s life.

An epidermoid mass, benign, but we know benign does not mean harmless. It is composed mostly of skin cells, harmless, but not harmless at all, for they are clustered where they should not be. This mass has invaded the spaces in my husband’s brain that should be filled with cerebrospinal fluid. Medical texts will tell you that epidermoid tumors insinuate themselves around structures of the brain.

Insinuate: To introduce (as oneself) by stealthy, smooth, or artful means. Insinuation implies to me an intentional act. Can cells have intent? Standing in this medical office, staring at this invasion of my husband’s brain, I feel they can.

• • •

Neurons are needy; they require an extensive support staff, a function capably filled by the glial cells. One type of glial cell, the astrocyte—so named because of its star-shaped appearance—seems to be amazingly busy looking after neurons, coddling them, ensuring they get the right nutrients, and encouraging and supporting their synaptic connections with other neurons. Astrocytes speak to each other in their own language, revealing their stories through a flow of calcium ions—stars in the dark, neuronal forest of the brain, a study worthy of Vincent van Gogh.

• • •

My husband seems unperturbed, fascinated by the image of his brain on the screen. He leans in, peering closely, pointing to features and asking questions. I feel angry that he can be so calm. He never did have any imagination, I think. In our relationship, I am the creative one, weaving stories, drawing portraits, imagining new futures. He admires this quality in me. But in our delegation of marital duties, it means I am the designated worrier. He chooses to trust that the future will take care of itself. He cannot imagine what is coming.

Nausea rises in me, and I step back. The three men move closer to the screen, ignoring my movement. I leave the room quietly, close the door behind me, and lean against the wall, trying desperately to breathe, trying desperately not to cry. This is us, I think, about to live a different kind of life.

• • •

Love does not reside only in the VTA. Imaging studies are revealing that many areas of the brain—the caudate nucleus, the anterior cingulate, and the amygdala, among others—interact to form intertwining circuits governing love and desire. These areas are activated by a complex orchestration of chemicals—testosterone and estrogen, dopamine, norepinephrine, cortisol, and oxytocin—in a swirling mix endocrinologist Krishna Seshadri calls “an ancient cocktail of neuropeptides and neurotransmitters.”

Stephanie Ortigue, a neuroscientist who conducts imaging studies of the brain in love, tells us this: “So we can confirm, yes, love really exists in the brain. There is scientific proof.”

• • •

This invasive tumor the MRI has exposed started developing before my husband was born. It began with skin cells, normal cells, misplaced during the first few weeks of his development in his mother’s uterus. This happens infrequently; only about 1 percent of brain tumors are epidermoid in nature. Statisticians can tell you the probability of its occurrence, though they cannot tell you when it will happen, for it is an unpredictable event. It is random.

• • •

Our brains are diligent and dedicated, never resting, even while we sleep. The fact that humans require sleep has always been puzzling. Why should we be reduced, at regular intervals, to a state in which we are so vulnerable to predators? Although we have known for some time that sleep facilitates memory consolidation, recently we have learned about other nighttime activities.

It seems that during the day, when our neurons are doing their rock-star thing, they are also making quite a mess, generating cell waste and toxins. It falls to the helpful glial cells, now assuming the role of plumbers, to clean things up. Scientists studying the mouse brain (a surprisingly good surrogate for the human brain in research) have observed that during sleep the glial cells widen channels in the brain, permitting waste products to be washed away in the cerebrospinal fluid. Without this clean-up, cell death can occur. One widely accepted theory suggests that this activity is so energy intensive that certain brain functions must be shut down. And so we sleep.

• • •

The neurologist recommends immediate surgery. We have done our research, so we have expected this, and calmly focus on logistics. My husband does not reveal whatever fears are in his head. He remains optimistic.

Because of the tumor’s size and how extensively it has invaded my husband’s brain, only a few surgeons in the country can perform the procedure. Incredibly, one is located in our hometown. We take heart from this; it seems an auspicious sign. We both still have family there, so we will have support if we need it. We choose to drive, a six-hour trek, taking our cat with us. Our little traveling troupe.

Using a high-speed drill and a saw, the surgeon will remove a portion of my husband’s skull. Through this opening, located just above the right temple, he will insert his instruments, his scissors and dissectors. Because the brain is tightly packed inside the skull, care must be taken while dissecting out the tumor so as to avoid damaging nerves and blood vessels and the brain itself. After the surgeon does his work inside my husband’s brain, the piece of skull—the bone flap, they call it—will be replaced using plates and screws.

As frightening as the procedure is in concept, the surgeon makes it all seem so very routine. I am familiar with this surgeon; I have seen him in action. He has near God-like status and an icy demeanor. He has good hands, they say. People like to attribute magical qualities to a surgeon’s hands. We need to believe in this magic when we are so vulnerable.

• • •

What scientists know about love they know from fMRI scans, an imaging technique that maps brain activity by measuring blood flow. With confidence, they tell us that mature love differs from early love, something we already know from experience. Their scans tell them that neural activity changes with the duration of a romantic relationship. The VTA continues to fire, but there is also increased activity in regions of the brain associated with pair bonding, and especially with maternal bonding.

Some scientists claim it takes two years to achieve this state of mature love. My husband and I married in our mid-thirties, bypassing the giddy, irrational courtship of the very young. Our union is thoughtful and deliberate. When my husband’s tumor is discovered, we have been married seven years. We are creating and sharing a life. We are bonded.

• • •

The type of tumor that is cohabiting with my husband’s brain is sometimes called a pearly tumor because of its white, glistening appearance. It is surrounded by a thin capsule, the thickness of tissue paper, which has a surface described as silky, delicate, translucent, and veil-like. Silk and pearls and veils. Words for a wedding, for a bride. As the tumor grows and surrounds blood vessels and nerves, this delicate capsule adheres tenaciously to every surface, refusing to be dissected from that to which it clings. And now I recognize my enemy—this shy and sly, coy and clinging imposter bride curled deep, in shocking intimacy, within my husband’s head. It is just a cluster of cells, the consistency of cottage cheese, and yet my brain clearly recognizes it as a rival and attributes to it all the negative qualities of my own sex. Makes it a character in a story. Offers it to me as a character in my story.

• • •

Our brains speak to us in stories. They know what we like. Neuroscientists tell us that we do not perceive the world as it really is. Our brains, they say, are constantly pulling levers and flipping switches behind a curtain, sorting and filtering sensory data to provide a view of reality that enables us to function in the natural world. That helps us survive. Our brains work continuously, their different parts collecting different types of information about our environment, bits of data from which they weave a story we can understand. Scientists believe they have identified a special region of the left hemisphere of our brains that acts as the manager of this process. They call it the interpreter.

This is the part of the brain that works hard to make sense of the disparate and sometimes contradictory sensory data we receive. When information is missing, the interpreter attempts to fill in the gap with data retrieved from memory and makes guesses about the future based on past experience. It is not always correct, sometimes misleads us, and is susceptible to bias from emotion, yet it provides us with something remarkable.

Psychologist Michael Gazzaniga calls the interpreter the “glue that keeps our story unified and creates our sense of being a coherent, rational agent.” It is the interpreter, he tells us, that “give[s] us an autobiography.”

• • •

The surgery goes well. The surgeon is smug, full of pride. When I express amazement that my husband will be discharged the second day after surgery, the surgeon shrugs. Of course, he says, my patients always do well. He is proud of his record.

My husband’s recovery is quick, though there is one major complication: he cannot lift his left eyelid. The vision in the eye is intact, but the eyelid does not respond. The doctors tell us there is a small chance the nerve will heal and he will regain control over the eyelid, but they can’t quantify that chance. And because they can’t do this, we know the chance is low. We agree that if this is the worst we have to deal with, then we are lucky.

Nine months later, my medical director asks me to accompany him to several European cities to meet with a few eminent researchers to try to convince them to participate in a clinical trial for a new drug we are planning. Because he loves Paris—used to live there, in fact—he plans our itinerary so we have a weekend at leisure.

My husband has never been to Paris, so he arranges to board our cat at the vet and flies out to meet me for the weekend. We walk the streets of Paris and play tourist, ending up at Notre-Dame. It is dark and stuffy and surprisingly noisy with the bustle of people. We crane our necks to admire the Gothic arches and soak in the atmosphere, which feels, to us, very ancient. My husband is a long-lapsed Catholic from a devout family, and I carry the DNA of generations of doubters; we are not usually susceptible to the temptations of religious ritual. But when we see the flickering votive candles—so many—in their stands, we stop. He turns to me and shrugs. “It can’t hurt,” he says. “No,” I agree, “it can’t hurt.” We place a donation in the box—a couple of euros, I think—and light a candle. We stand there silently, our fingers lightly entwined, then turn to go.

Although someone observing my husband might have noticed a slight awkwardness to his gait, a slight clumsiness, this could be attributed to his new monocular vision. His occasional hesitations, his moments of confusion, could be attributed to the unfamiliar surroundings. Otherwise, he seemed unchanged, still himself. Remembering it now, I can see this Paris trip was our grand finale, the closing scenes of our former life.

• • •

Our brains want us to survive. Our survival is, after all, in their best interest.

Long after the breathtaking sprint of neuronal circuit formation during gestation, our brains are quite willing to rearrange themselves for our benefit. Children who experience brain damage at a very young age can often recover mental function due to the brain’s ability to rewire itself, a quality known as plasticity. Pediatric neurosurgeon Neil Feldstein tells us that even children who undergo a hemispherectomy (removal of half the brain) for treatment of seizures “can recover near normal function over time.” After childhood, the brain becomes more obstinate, but will often respond to focused training or rehabilitation.

London cabbies famously spend several years studying intensely to gain “the Knowledge,” a detailed mental map of twenty-five thousand streets and thousands of landmarks. Imaging studies have shown that their brains help them by changing structurally. MRI scans have shown that the cabbies have larger hippocampi—an area of the brain involved in memory and spatial relationships—than do you or I, and the size is correlated with the number of years on the job. It’s not clear how this occurs, but the hippocampus is one of the areas of the mature brain that can actually create new neurons, if the demand is great enough. From the experience of London cabbies, we might infer that our brains not only want us to survive, they want us to succeed.

• • •

The memory I have offered of our days in Paris is not correct—or at least not complete. Some part of my brain remembers, acknowledges, that I was aware of changes in my husband even then. Something had been removed, a part of my husband that could not be biopsied or measured. The tumor had stolen an elusive, intimate element of his essential nature, knowable only to me.

• • •

Life continues for us in a familiar fashion, but I am aware of subtle signs of cognitive decline in my husband. He returns to work, although he rarely speaks of it. We both work in clinical research and have always shared our experiences and supported each other through challenges in our jobs. Now he becomes elusive, shrugging off any questions I ask. I choose to assume he is being circumspect about proprietary data of his company.

He begins to have trouble with routine tasks. One of his “marital chores” is to pay the bills. He is organized about this, writing out checks with his spidery yet precise handwriting, notating payment dates and check numbers on invoices, sorting and filing papers in a sensible system. It is something I hate to do, and I am grateful for his willingness to do it so reliably. Bills, now, are paid later and later. Filing piles up until he is overwhelmed with the chore. I start to assist, but he refuses to turn over the task to me completely.

He has always loved games, playing with an enthusiastic and competitive spirit. On a trip home, he plays a game of chess with his brother, and afterward his brother comes to me, shakes his head, and tells me of his concern. “He just can’t make the moves,” he says. He seems satisfied presenting this information to me, making it my responsibility, but I am left wondering what to do with it. I choose to rationalize. Chess is not essential to our life, and my husband’s inability to play a game does not alter who he is. Only later will I understand that the loss of this skill, to anticipate and plan moves, will impact my husband’s ability to function in the world. And then, I will reflect on how much a marriage is based on the plans we make together, the shared assembly of a life, the construction of a story.

• • •

Although we are beginning to understand why our brains need periods of sleep, we still do not know why we dream. Dreams are an almost universal human experience and have been discussed and analyzed since we first learned how to communicate, but they are still a mystery. It used to be thought that dreaming was limited to periods of REM—rapid eye movement—but now we know we dream in non-REM periods as well. Harvard-based cognitive neuroscientist Robert Stickgold estimates that of an eight-hour sleep cycle, six are spent dreaming.

During the day, we move happily through our lives, interacting with our environments and making decisions, convinced of our own agency. But at night this illusion disappears. When we close our eyes and drift into sleep, our brains, in a cunning maneuver, deactivate areas of the prefrontal and parietal cortices associated with executive function—logic, planning, decision making—those activities that make us feel that we are in control. We are then at the mercy of our brains’ ambitions. And so we dream.

• • •

Two years after the first surgery, a routine scan shows us the tumor is growing again. The surgeon’s good hands did not work magic; he was too delicate in his approach and left too much behind. It seems he was too concerned with short-term successes, not with long-term outcomes. I remember his arrogance now with bitterness. A second surgery is required, by a different surgeon, in a different city. He has a more aggressive technique and is determined, he tells me, to remove all of the tumor.

I cannot say what this surgeon does inside my husband’s brain after cutting another window into his skull and reaching his hands inside. But the effect is brutal. Although the brain cannot feel pain, it seems to lash out in anger and torment in response to the surgery. It is wounded, and it makes this known. Recovery from this surgery is long and difficult, and over the next few years I watch my husband slowly disappear.

• • •

My husband develops a mean streak, something I’ve never seen in him. Something I never thought I ever would. He threatens to take our cat far away from our house and drop her off near the highway. I cannot believe he would ever really do this, but am stunned by the bitterness in his voice, his desire to lash out, to cause me pain. He clearly thinks I’ve not done my best for him. He tells me I am not nurturing enough. And there is truth there. I have begun to retreat into work and to withhold myself from him. I am not proud of this, but I justify it as a need for self-preservation. Before I, myself, begin to disappear.

• • •

We exist together with our brains in a state of mutual cooperation, if not perfect harmony. Our brains remind us when it is time to eat and time to sleep. They tell us to push down that pedal on the right when the light turns to green. And they ensure that we breathe in and out, that our hearts contract and relax, and that we produce sweat or tears, when each is required.

Sometimes our brains frustrate us with their balky stubbornness when we are trying to learn a new language, or with their peevish refusal to grasp concepts such as Avogadro’s law or confidence intervals, while the rest of the class sails past us. Most irritating, they often refuse to retrieve pieces of information that we know we know—perversely withholding the name of a former coworker while instantly offering up an unrequested memory of an advertising jingle for Pepsodent toothpaste learned in childhood.

Yet, occasionally we are astonished by the emergence of an insight or a solution to a problem, to which we seem to have contributed nothing at all. Often these are provided by our subconscious when we dream. While he slept, the story goes, Mendeleev watched the pieces of the periodic table floating into place; Paul McCartney awoke with the melody of “Yesterday” playing in his head, fully formed; Robert Louis Stevenson, writing about the stories he published, praised the “Little People” in the “back garret” of his brain “who do one-half my work for me when I am fast asleep.’

I know my brain belongs to me, but I do not feel it is all of me, and I frequently find its activities a mystery. We sometimes seem to have conflicting goals, and I am convinced it knows things it’s not telling me.

These feelings are neither unique nor irrational. They represent the concept of duality, the idea that the mind and the brain are separate, and neuroscientists would tell me it just ain’t so. But I doubt they would belittle my perception of my brain as an enigmatic partner in my life. Neuroscientist David Eagleman has said, “There is a looming chasm between what your brain knows and what your mind is capable of accessing.”

My conscious self—the self I feel is (or at least should be) in charge—is merely, according to Eagleman, a “tiny stowaway on a transatlantic steamship, taking credit for the journey without acknowledging the massive engineering underfoot.”

• • •

The years following the second, brutal surgery are marked by repeated seizures (not uncommon after this kind of surgery); a raging thirst for alcohol that seems to come from nowhere, requiring three hospitalizations for detox and rehabilitation; and an exacerbation of allergies that leads to cardio-pulmonary arrest resulting in a week-long coma. There are cognitive changes that eliminate the possibility of my husband’s maintaining a career and personality alterations that I can observe only with bewilderment and anguish.

It’s not that we hadn’t prepared. When we discussed worst-case scenarios before the first surgery, my husband had instructed me, with defiant courage, in the event he was severely disabled, to “Slap my ass in a nursing home.” We never considered this other scenario—that he might live and function independently, but as someone other than himself.

• • •

Who is the third who walks always beside you?

When I count, there are only you and I together

But when I look ahead up the white road

There is always another one walking beside you.

T. S. Eliot, The Waste Land

Sir Ernest Shackleton, remembering a grueling trek in the Antarctic with two of his men, wrote, “It seemed to me often that we were four, not three.” Charles Lindbergh reported that in his exhausted and sleep-deprived state during his solo flight from New York to Paris, he became aware of “phantoms” who spoke in “familiar voices, conversing and advising on my flight, discussing problems of my navigation, reassuring me.” This phenomenon has become known as the “third man factor,” after Eliot’s poem.

Some may choose to interpret these visions, which occur during times of extreme stress, often under conditions of darkness, cold, and isolation, as supernatural beings or angels, but science suggests they are the creations of our own brains. Electrical stimulation of an area of the brain—the temporoparietal junction, one of the regions that control our perception of what is you versus what is not you in our environment—can induce the feeling of a sensed presence. Scientists suggest that our brains, under stress, malfunction and project another “self” into our experience. I choose to believe this is an attempt by the brain to provide comfort to us, to itself, in times of extreme need.

One effect of the surgeries comes as a surprise: my husband’s mild asthma increases in severity. He wakes me one night; he is in significant respiratory distress. Should I go to the hospital? he asks. Yes, I say, can you manage to get dressed? We live within blocks of a community hospital, so I decide to drive him rather than call 911. He arrests as I am pulling into the ER parking lot. The staff put me in a small private waiting room. The ER physician comes in to tell me my husband had drawn his last breath, but has been resuscitated and is now on a ventilator. He waits for my reaction, dreading, I think, an outburst of emotion. But I feel a remarkable calm, an almost dispassionate serenity, incredible under the circumstances. I simply nod and ask the questions I know to ask. Somehow my brain has quieted itself, muzzled the watchdog amygdala, and sent out neurotransmitters that will permit me to focus and function, to make it through this night. I am aware of this even as I am experiencing it, and I am grateful. My brain does not create a visible phantom to wait with me; I know there is no one else in the room. Yet I still feel, somehow, that I am not alone. I seem to sense another presence, very near, inside my head, that is supportive and steadfast. I can only describe the feeling as an awareness of a self within a self.

• • •

The arrest and subsequent coma take their toll on my husband. His resilient brain recovers, he can walk and talk, read and write, but more of him is lost. His responses are slower, he tires easily. He requires more and more sleep. He craves it, becomes irritable if it is interrupted. His brain must need the sleep, in order to heal itself.

I am a restless sleeper, awakening frequently in the night. When this happens, I go downstairs, finishing the night on the family room sofa to read.  One night I inadvertently awaken him. He accuses me of doing it deliberately and moves into the guest room permanently.

• • •

I am pulled out of a meeting at work. There is an urgent call. My husband’s manager is on the line, telling me my husband had a seizure at work. They are now in the ER of a nearby hospital. Can I come quickly?

When I arrive, my husband is lying on a stretcher, conscious, awake, but with an incongruously goofy grin. His manager is hovering nearby, obviously anxious to speak with me. We sit, and he pulls his chair around to face me, and it pours out of him.

My husband has been unable, for some time, to complete even routine tasks. He spends his time online, emailing jokes and cartoons to a long list of acquaintances. I understand now that his manager has been covering for him, supporting him. And he has reached a breaking point.

I know his manager is a good man, a kind man. I thank him for his help and his honesty, and he walks away, obviously relieved that he has done his duty.

I have been deceiving myself, and now I am forced to confront the truth. An ending has been written to our story.

• • •

It is late; I’m just home from work, still in my coat, searching for a cold drink in the refrigerator. He has been drinking. He moves in and out of sobriety frequently during this period. I can tell he’s been waiting for me, preparing an ambush. He has a new vocation, he tells me. He is going to drink, and I am going to support him. There is nothing I can do about it. He says this with malice. My brain reacts before I have fully processed this statement, and I hurl a bottle of water at his head. It is a half-empty, soft plastic Evian water bottle, an impotent missile made even more ridiculous by my pathetic aim. It falls to the floor beside him. He jeers, and I feel powerless, hopeless. I now no longer recognize us. The tumor has managed to infiltrate my brain, too; I have been changed, and not for the better. And I wonder, whose lives are we living now?

• • •

After four years of support and medical care, my husband finally reaches a stage of some stability. Those four years, although undoubtedly stored in my memory, are not easily accessed. What I remember is the movement of time, in moods alternately pesante—heavy, ponderous—and furioso. And I remember an inescapable feeling of failure.

My husband is unaware of, or at least untroubled by, his cognitive deficits. He seems to care not at all that he has no job, no career. He has lost any interest in, any capacity for, long-term planning or the activities that maintain a normal life. That maintain a marriage. Any attempts by me to recreate our old life make him frustrated and angry.

His life becomes centered on AA meetings. He makes new friends, some of whom I do not trust. He makes new connections. He grows his hair long and pulls it into a ponytail; he changes his manner of dress, now preferring black high-tops, jeans, and T-shirts. His punk look, I tell him. Gone are the designer ties I routinely purchased for him on my travels, his “arsenal” for another game he relished—a friendly competition with a colleague, which they dubbed “Tie Wars.” Remnants of a former life.

Amazingly, within this decreasing circle of his life, he finds a kind of happiness. His damaged brain, accommodating the changes inflicted upon it, has given him a new concept of self, has created for him a new story. As if to offer him this, at least, after all they have been through. This new story, this story he needs, is so different from our story, the story we have shared.

Some things remain—his love of bad jokes, his penchant for quirky movies, and, always, now that some of his rage has dissipated, his essential kindness. But whatever it was that made him him, that made him the man I married, has vanished. My sense of loss is acute, and is made worse by the fact that he does not seem to share this sense of loss.

His life now consists of hanging out with his buddies, frequent naps, movies, and games. An adolescent lifestyle. And I have an absurd thought, that his brain has managed to save a previous version of him and has replaced the irreparably corrupted files of his brain with this earlier self. For some reason this thought is comforting.

We are both exhausted—I from my constant struggle to maintain a semblance of “normal life” and he from my efforts to remold him into the man I married. We agree to divorce. Eventually, he moves back to our hometown to be near family, a move I fully support, a decision for which I am grateful. I move to a different state, a new job. We wish each other well in our new lives. We hear about each other through family from time to time, but our connection has been severed.

• • •

How can it possibly be that all our vibrant emotions, potent desires, and transcendent feelings are the result of electrochemical impulses within this gelatinous mass inside our skull? How can chemicals create consciousness?

Physicist Sean Carroll suggests that our storytelling apparatus is involved—all those areas of the brain that busily, and invisibly, send information to the interpreter. Preferring the term “prime minister of the parliament,” he describes it, poetically, as that “seat of cognition where the inputs from many modules are sewn together into a continuum of consciousness.” If this is true, we are an act of self-creation, the synthesis of the stories we tell ourselves.

• • •

The headlines ask, “Are We Hardwired for God?” It seems there may be a biologic basis for religion, a basis rooted in the limbic system of our brains, a system strongly associated with emotion and arousal. This circuitry, which contributes to spiritual experiences, may explain what some call our tendency toward transcendence.

Since ancient times, across cultures, people have reported spiritual episodes or experiences they describe as being imbued with feelings of peace, of calm, feelings of experiencing a higher reality and a unity with the universe. Now scientists in the new field of neurotheology are attempting to visualize and quantify these feelings. They use sophisticated imaging techniques, such as fMRI and SPECT, to peer inside of the brains of Tibetan monks during meditation, Franciscan nuns in prayer, and Mormons participating in religious activities. By measuring blood flow, they can determine which areas of the brain are active. They report a decrease in the activity of the parietal lobe, the area that orients us in our environment and helps us determine us and not us in time and space. Tibetan monks tell us that, when they are in deep meditation, time and space cease to exist and they feel a union with the universe.

• • •

During the years of my husband’s surgeries and recovery, I feel as though I am running a marathon. I keep my head down and my feet moving. I live my life out of sheer determination, and I will myself to continue.

After the divorce, in this new city with my new job, I buy a house, the first house I have purchased on my own. I am still operating on nerves, adjusting to a new job, managing the logistics of a long-distance move, the purchase of a house. I really don’t expect more, although I crave, more than anything, peace.

One evening that summer I sit in my easy chair, cat in lap and tea in hand. I have positioned the chair by the living room’s wide bay window, which looks out on the farmhouse-style porch. The former owners have left three baskets, bursting with lush, red impatiens; they hang from the eaves of the porch between the white painted posts. From my chair I can see the dining room window, which is now dressed in a swag I have sewn of red and cream checked fabric, a country look that suits the style of the house. There is no music, only the quiet of a summer evening. The windows are open to a cool breeze, and time again moves in an easy adagio tempo.

I realize I am at peace, when suddenly there is more. I am astounded by something more than happiness or contentment, something barely remembered. A feeling tender and piercing, sharp and sweet. Joy. Elusive joy, which can be pursued, but never willed, and which now has come to me from . . . where?

I wonder, what would a medical scan have shown happening inside my brain?

• • •

Ten years later, a phone call. He has died. The cause of death is not clear, but some return of seizure activity is involved. I do not fly home for the funeral. I have said my goodbyes.

After his death, I become aware of some part of my brain rearranging memories in the wide warehouse it keeps. Sorting, shuffling, discarding. It is searching for some order, some meaning in the past. This is not grieving, but rather a reexamination. My brain apparently recognizes this as a chore that must be done, and it is doing this activity for me, as a service. Out of love. And eventually, it offers up its finding, in a language it knows I will understand.

I dream.

My husband has returned. His presence is strong, although his image is withheld from me. It is elusive, a reflection on the floor, a movement around a corner, a half-glimpsed shadow. There are no words, only a deep, textured silence. I have questions, but cannot ask them.

I give him my bed, for we are no longer husband and wife. I stay in a small adjoining bedroom, which does not exist in reality. I have no idea how much time passes. I become confused about time. And then, going to the closet, I find that many of his business suits, suits he no longer wears, wore, have been removed.

He is leaving again.

I awaken within my dream, in the spare bedroom that does not exist. I look at the bed that I have given him, my husband who is not my husband. The bed has been made, the quilt straightened. He is not there, though the pillow holds the imprint of his head. The quilt, which was blue, is now white; the room, the whole house, is luminous. I rise, knowing he is leaving soon, and go into the kitchen, which is an incandescent white. At first I am startled, but the quiet that surrounds me, a palpable presence, is deep and comforting.

I know he is leaving, and I am not sad, though I want very badly to know where he is going, with whom, to what kind of life. But I cannot know these things, so there must be acceptance.

I gaze up at two clerestory windows that have appeared. They are two eyes from which emanates a light that is both brilliant and serene. I watch large snowflakes begin to fall, or perhaps they are petals from the trees around us. They descend gently and begin to fill the windows, gently closing the eyes and softening the radiance to a caress. The furniture and walls begin to evanesce, losing their form.

I awaken into reality. The darkness of the room is confusing after so much illumination. I lie calmly, my breathing quiet and my heart beating slowly, as if I am emerging from a deep meditation. I know I been given something. Solace.

I am composed and quieted. Yet, I am left longing for that soft bright light, which does not exist in reality and cannot be described by words. A product of my own brain’s creation, a healing gift offered to me. And there is something more. A release. And an instruction. To remember the past, and the people we were, with tenderness.

• • •

The human brain, so humble in appearance, is both fragile in form and resilient in function. Scientists like to say, and many of us like to repeat, that it is the most complex object in the known universe. We say this with satisfaction and, if we are honest, with a degree of hubris. Despite our very human pride, the fact remains that the brain, with no apparent effort from us, creates and holds within it one’s world and one’s self. There is resistance on the part of some to accept the concept that this three-pound mass of jelly somehow creates consciousness, provides us with an identity, and enables us to love. But I will tell you this: damage the brain and you damage the mind; you alter the personality and change the very essence of the person.

I will follow with interest the scientific exploration into the inner workings of the human brain, but I know I will maintain my stubbornly persistent (and distinctly unscientific) conviction that my brain and I are companions, partners in the creation of this evolving story that is me. This is the most enduring and intimate relationship I will know. If it should leave me, I would be unable, even, to grieve.

About the Author

Phyllis Beckman

Phyllis Beckman has had two careers, the first in patient care and the second in the research and development of pharmaceutical products and medical devices. She currently lives in Saint Paul, Minnesota, and is a student in Hamline University’s MFA program.

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