Spectrum

Photo by Ishwar/Flickr

By Fiona Tinwei Lam

RED (life)

My partner was brewing a pungent, murky brown concoction on the stove. The label on the box beside the stove listed burdock root, slippery elm bark, sheep sorrel, and turkey rhubarb root, but it gave me no clue as to the purpose of the ingredients.

“What’s it for?” I asked, sniffing the pot.

Ted mumbled something unintelligible.

“Is it a laxative?” I asked.

“Not exactly.”

“For digestive problems?”

He paused. “Nope.”

Puzzled, I tried again. As a custom cabinet-maker, he had been working long hours and weekends but seemed energetic and healthy. “Is it for your anemia?” Several months before, he had been diagnosed with a severe iron deficiency, but he’d been taking a supplement.

“Kind of.”

I made a few more failed guesses. Finally, he said flatly and quietly, “It’s for cancer.”

I stared at him. “Why on earth do you think you have cancer?”

He kept stirring the pot. “I’ve been passing blood.”

When I urged him emphatically to see the doctor for more tests, he shrugged. He carefully poured the steaming brew through a sieve into a couple of large jars, not spilling a single drop. “I guess I should.”

•••

Several weeks later, we sat with the gastroenterologist in a small examining room, looking at a color print-out of the images taken during an internal scan of Ted’s intestines. One image revealed subtle polyps that looked hardly more sinister than crimson crayon scrawls. Another image showed the slight bulge of a small polyp that resembled a small fleshy boil or pimple. But then there was the final image: it looked like a blob of gummy red gelatin encasing curled-up maggots. It filled a third of the intestinal tunnel and resembled a fetal mouse or fetal frog. I repressed an instinctive shudder.

“It’s cancer,” the doctor said without drama. “I took a biopsy, but I’m fairly certain.”

So this was what cancer looked like from the inside. Ted’s father had died over two decades earlier of complications following stomach cancer surgery. A decade earlier, Ted`s eldest sister had died of colorectal cancer at the age of fifty-seven. Years of gruelling chemotherapy, radiation and experimental therapies had failed to stop its spread. We were informed that people with a first-degree relative with colorectal cancer are at a higher risk of developing it. Being the most commonly diagnosed type of cancer after prostate cancer for men, it is the second leading cause of death from cancer overall, although if detected early, it is over ninety percent curable.

The doctor matter-of-factly went through the process that we’d be going through: staging to determine how far the cancer had spread, an ultrasound and CT scan, analysis of the biopsy results, a referral to a surgeon. He drew a diagram of the kind of bowel resection surgery that Ted could expect to undergo—it looked deceptively simple, a cross between plumbing repair and alterations at a tailor’s.

Strangely, neither Ted nor I was alarmed. Perhaps we’d used up our storehouse of apprehension during the weeks leading up to the colonoscopy From this moment on, he would go through the necessary tests and procedures with all the hoops and steps laid out for him. It was as if we were both buckled into the seat of a medical amusement park ride called “the oncological flow chart.” A positive result on one test might lead to a diversion down a more complex chain of procedures; a negative result might lead to a positive destination reached in a shorter time. None of the flow charts in the cancer brochures led to the word “death.” But it existed, unwritten, just over the edge.

•••

We arrived for Ted’s surgery at Vancouver’s historic St. Paul’s hospital on the first day of August. As we dutifully followed the painted red line on the floor through the body of the older buildings into the newer sections, we passed commemorative plaques about the nuns who had fundraised on horseback at mining and logging camps to raise funds to found the hospital at a time when the current downtown site was located on the outskirts of wilderness.

Little did we know how familiar we would become with that brick edifice with its threading red line. Advised initially that he might expect a stay of five days, Ted would remain there for over four weeks. I would be taking the bus there daily, sometimes twice daily, for the remainder of the summer.

 

VIOLET (spirit)

We’d prepared for weeks before the surgery, going in for Ted’s appointments with the surgeon and for scans, as well as to the pre-admission clinic to review hospital checklists, instructions, and test results which I gathered in a purple file folder on the kitchen counter near the phone. That file became both compass and hub through the summer and fall.

On the morning of the operation, we were the first to arrive at the day surgery department at what seemed like any typical waiting room—institutional chairs arranged against the pastel walls, a coffee table with outdated magazines. After he checked in at the reception desk, Ted changed into a hospital gown and we sat together until he was called. It didn’t seem to be a place of sufficient gravitas, of momentous, radical change, where your guts would be sliced open, dismantled, rearranged or removed—or where you could die.

Because the surgery was supposed to last three hours, I took the bus home while Ted got his abdomen shaved and epidural and intravenous lines inserted. Too restless, I returned downtown. There were booths and kiosks set up along Davie Street as part of a block party in advance of the Pride Parade the next day. At Bute and Davie I walked by the celebrated rainbow crosswalk, Canada’s first permanent rainbow-painted crosswalk added to the West End in 2013 to celebrate the thirty-fifth anniversary of the local Pride Parade. I went into a dollar store to buy a small rainbow flag to mark the festivities. Inspired by Judy Garland’s song, “Over the Rainbow,” the flag had been designed for the 1978 Gay Freedom Day Parade in San Francisco to represent the diversity of the LGBTQ movement, with special symbolic significance assigned to each colour.

Back at the hospital, I headed upstairs to Ward 10B to look for Ted. He was a bit groggy but conscious and smiling, and looked surprisingly normal except for the various tubes emerging from underneath his sheets that were connected to a catheter, an IV, and a patient-controlled hydromorphone dispensing machine known as a PCA that he could press whenever he was in pain. I pinned the rainbow flag next to the “Nothing by Mouth” sign that was turned face down on the bulletin board behind his hospital bed, wondering why each of the six beds in the room had bulletin boards with those signs and no artwork or photos.

As there didn’t seem to be any kind of bulging from his abdomen, I asked Ted if the surgeon had given him an ostomy. He wasn’t sure and hadn’t had a chance to ask. The whole idea of having your intestine protrude out from your body to expel feces into an external bag had made us both queasy and anxious, despite our having watched the obligatory DVD at the pre-admission clinic that showed gorgeous athletic men and women blithely unaffected by their ostomies.

With his permission, I gingerly lifted the sheets and then his hospital gown, bracing myself for the worst. We both peered down at his belly. There was a narrow tube leading from a dressing a few inches beneath his rib cage to a small disc-like Hemovac drain to remove the build-up of excess blood and fluids after surgery. On different parts of his belly were five neat sets of black staples along puckered, deep red incisions, with the longest row near the pubic area. Over the weeks ahead, the redness would soon fade to purple, and then eventually light brown, until the scars from the incisions were barely perceptible.

I put his gown and the sheets and blankets back in place. I felt like celebrating and considered heading out to watch the parade the next day to wave our little Pride flag. Ted had made it through surgery successfully. He was in good spirits. The cancerous tumor had been removed, with no need for an ostomy. Maybe this whole ordeal wasn’t so terrible after all?

 

BLUE (serenity)

Ted found it difficult to sleep on the ward. The blue PCA machine dispensing the hydromorphone and IV fluids ticked and clucked day and night without a break except when the IV or the medication needed to be refreshed. We pretended there were miniature robotic chickens trapped inside it, even tried to imitate the sounds. He had to take it with him to the bathroom, the IV pole draped with tubes and with electrical cords that had to be pulled out each time. But the PCA alleviated the discomfort, at least during those first few days. I fretted about the possibility of addiction, but he waved my concerns away and kept clicking the button to bliss.

When he’d been first diagnosed with colorectal cancer, I had wondered how I’d feel about the hospitalization, bed pans, diapers, catheters, the physical changes to his body, the possible ostomy. Although we had lived together and become more interdependent over the past four years, he knew that I still had some doubts about our relationship. He was concerned that his care would become a burden that I would resent.

“You don’t have to come every day,” he told me.

I looked at him in disbelief. “Of course I do!”

And I did. The day after the operation, I ventured out to drift among the crowds in the intense August heat to get a glimpse of the parade. The noise and hoopla were fun, but ultimately it felt jarring to be surrounded by the teeming exuberance and staged goodwill. I rushed back to the hospital where it was quiet and cool and where I really wanted to be—with Ted.

Most of the time, after arranging plants and flowers and cards on the sill and getting him fresh ice chips, I’d gaze out the window by his bed. I’d look down at the shifting rhythm of traffic on Burrard Street and out at the glass towers that reflected both each other and a faceted sky. After drawing the curtains between us and the other patients so we could at least have the illusion of privacy, I would sometimes sit facing him on the bed, my back against the footboard, my legs alongside his, so we could hold or rub each other’s feet, which felt more intimate than holding hands.

Sometimes after the visitors had gone and if my twelve-year-old son was staying at his father’s, I’d remain to watch dusk fall across the city. I didn’t have to be social or chase down Ted’s frustratingly elusive leprechaun-like surgeon and his wandering medical team. The fluorescent lights would be turned off and everything would slowly become bathed in blue. I’d watch a DVD with him on the old portable player I’d brought, the light from the screen flickering across his face.

Other days seemed very long. I wouldn’t realize it until I returned home. Saturated from the hospital, I would want to collapse in bed, but I’d face a backlog of texts, voicemail, and email messages. My work, household chores, and tasks accumulated, undone. I had just enough energy to deal with Ted at the hospital and my son at home and not much left for anything else. But it seemed impossible for it to be any other way. Whether I was examining Ted’s stitches and dressings, helping out the nurses by changing his hospital gown or diapers, giving him sponge baths, massaging his feet, taking him for walks, or just sitting with him, it was important for me to be there. Our lives were entwined. Until then, I hadn’t been aware of how much. What bound us together wasn’t a yoke, leash or chain—it was a root.

 

ORANGE (healing)

Very soon after his surgery, Ted started receiving clear fluids. The little four ounce chilled plastic juice containers started to pile up: mostly orange, but grape and apple too. The inevitable hospital jello came also— yellow, orange, and red, laden with sugar, artificial flavours and colours, and probably made from gelatin extracted from the bones of factory farmed animals. Dishwater-like broths of questionable origin arrived as well. He downed them all willingly.

As his incisions seemed to be healing well, the type and level of foods swiftly advanced from meal to meal as the dieticians tried to speed his progress and ready his digestive system for his possible discharge from hospital in a few days’ time. He started receiving cream soups—broccoli, carrot, mushroom. When he started getting little cups of orange sherbet and vanilla ice cream, Ted’s eyes lit up as he devoured each one. His abdomen became increasingly bloated, however. We started joking that he was growing twins. Then rice with green beans and fish arrived, followed by a chicken sandwich, puddings. The stack of unopened juices grew taller. His belly ballooned out, painfully distended. The traffic jam inside his digestive tract became untenable. Intense, continuous nausea overcame him. He stopped smiling, his gaze turned downward and inward. The food was left untouched.

 

GREEN (nature)

Ted rejected the insertion of a nasogastric tube for two long days. But soon, it was impossible for him to think or sleep.

“Could I get more medication for the nausea?” he pleaded with the long-suffering nurse on the ward that day.

“You’re already on the highest dose,” she said shaking her head, disapprovingly. Her tone of voice shifted into persuasive mode. “Why not try the NG tube? You’ll feel better.”

Ted was fighting his body’s natural urge to reject the food. A scan showed that a gas pocket near his duodenum was causing the blockage. He finally agreed. It took five painstaking, arduous attempts by the nurses to feed the NG tubing down his nose into his stomach while he gagged and vomited on the floor. One attempt stopped him from being able to speak. He had to yank out the tube in order communicate to them that they’d threaded it in the wrong direction, toward his trachea instead of his esophagus.

When I returned later, he was sitting with his eyes downcast with concentration and discomfort. He seemed demoralized and exhausted. Green fluid was being suctioned out through his left nostril via a long tube attached to his nose that snaked into a large plastic canister attached to a wall unit. The canister was already half full. Canister after canister was filled and emptied that day. Ted’s nausea started to subside, but talking was kept to a minimum. I fended off friends from visiting.

“I’ll never look at a green smoothie the same way again,” I told him.

Over the course of the weeks ahead, it seemed almost everyone else in the gastrointestinal ward would be “producing” the exact same green fluid irrespective of what they were ingesting, as if the ward were some bizarre factory. The sound of vomiting was common. The cleaners were regularly called in to mop the floor of spilled bodily fluids of every type.

A number of patients came and went, part of the shifting social microcosm of the ward. We joked about pitching a reality TV show called Ward 10B. There was an elderly Danish man with dementia who was scheduled for a reverse ileostomy but kept pulling out his IV and trying to flee. Beside him was an outdoorsy young man who’d been airlifted to the hospital as a result of tearing his spleen after a dive gone wrong. After a few days, he was replaced by a wiry, grizzled fellow with keen, bright eyes, who swore and complained vociferously about the food. “What’s this shit?” The patient who had a bed next to Ted’s appeared to be a new immigrant. His chador-clad wife had her hands full trying to shush two young, precocious children. He was soon replaced by another patient whom we nicknamed “The Prince.” He conversed frequently and loudly on his cell phone in Farsi while his mother fussed over him. “More ice!” he commanded the nurses repeatedly.

The insertion of the NG tube did not end Ted’s problems. Just after his surgeon left for summer vacation, Ted’s temperature began to rise dangerously. His distended belly became tender and painful. The fluid in his Hemovac tube became pus-like and fetid, as if something were rotting inside him. A CT scan showed that there were air bubbles leaking from the re-sectioned area—infection had set in. He was put on an intensive course of antibiotics via IV and his vital signs were monitored every hour.

A peculiar foggy terror filled my throat and chest. My every movement seemed sluggish as if I were trudging through swampland, but certain thoughts flitted around in obsessive loops. I questioned the doctors, sent detailed emails and texts to his family members. I peppered the night nurses with questions when I’d get home late at night. Some would brush me off; a few would update me. If he deteriorated further, he would have to be admitted to the Acute Care ward for continual monitoring and more drastic medical interventions. A second operation could be risky, and if it occurred, even more of his colon might need to be removed with the likelihood of an ostomy, probably a permanent one. He might get another infection. Recovery would be longer, slower and more complicated.

Because his system had rejected most of the food and drink they’d given him, and because of the need for the re-sectioned bowel to heal properly, the doctor prescribed daily liquid nutrients, called total parenteral nutrition (TPN). A nurse told us that each bag cost $1000 to make fresh daily and had to be specially transported to St. Paul’s from another hospital laboratory. We named it the Crisco milkshake but it seemed more akin to breast milk. Chock-full of lipids, sugars, vitamins, trace minerals, and amino acids, it was a creamy white substance that was administered by an extremely narrow catheter threaded into a central vein in his chest. A nurse told me that the leftover TPN discarded at the end of each day supposedly worked well as plant fertilizer. (I took some home for the garden—our apple tree had a bumper crop the next year.) The TPN would sustain Ted for the next three weeks while he ingested nothing but ice chips. The orderlies with the food trays would stay away: the sign on the bulletin board was now turned face-up.

•••

The lounge in the ward had a small bookshelf with a few outdated magazines, several hospital foundation publications, and a number of dog-eared paperbacks. I noticed the cover of a single National Geographic magazine in the stack. The pristine copy was dated 1968 and its feature article described the plans for the first lunar landing. During those weeks in hospital, I sometimes felt like we’d landed on an artificial planet, a desolate sterile landscape with little vegetation, shifting inhabitants, its own unique language, hierarchies, protocols, and undeviating routines.

The whole ward seemed utterly divorced from nature: its windows wouldn’t open; the sliding glass door to the balcony off the lounge was locked; the concrete balcony itself was dirty and uninviting; there was no fresh air and little greenery other than a few limp, discarded bouquets and dehydrated plants left behind by discharged patients. I placed a hydrangea plant in the corner of Ted’s room so that he would awaken to their large blue clustered heads and rich green leaves every morning. As soon as they entered his room, the nurses and visitors would see something alive and beautiful and thriving.

 

YELLOW (sunlight)

Ted was supposed to have regular, short walks to maintain his circulation, increase his strength, and speed his healing. At first, it took immense effort just to get to the bathroom. He’d prepare himself with a shot of hydromorphone from the PCA, put on his special rubber-soled hospital socks, put on another hospital robe to cover his back, disconnect the NG tube during the days it was in place, clip the Hemovac to his gown, unplug the two electrical cords from the wall, drape the cords on the pole, pull himself up, and then try to walk step by shaky step without losing his balance. Getting back to bed meant going through the whole routine in reverse.

Eventually, he was able to get past the doors of the ward to reach the service elevators, next to windows that looked out onto the expanse of English Bay. He would pause there for several minutes, gripping a railing for support, before enduring the arduous fifty meter journey back to his bed.

“I was in better shape before the cancer operation,” he noted.

Right up to the day before the operation, he had been working full-time. He’d been full of vigor, tanned from a recent trek around ancient Haida villages up north, and ready to hop on his Yamaha motorcycle at any opportunity. Now he couldn‘t walk across a room without effort.

I thought of all those expressions—“gutsy,” “gut instincts,” “gut reaction,” “gut-wrenching,” “gutted,” “it takes guts,” “spill one’s guts,” “bust a gut,” and “no guts”—based on the word “guts” derived from the Old English word guttas for bowels or entrails. The adjective “visceral” comes from the Latin word viscera for inner organs also. It suddenly all made sense: the guts are located in our core, the elemental source of instinct, courage, determination, stamina, will, and strong emotion. The operation had hit Ted literally “right in the gut,” the stronghold of his vitality.

But as the days passed, his stamina gradually increased. We could extend his usual walk from the service elevators and back to include the ward down the hall. Finally, he was ready to try to take one of the notoriously slow elevators down to the fourth floor cafeteria and patio. As we waited, I could see how taxing it was for him just to stand.

The elevator finally arrived. Ted winced at every bump and jolt as we descended. The long imposed fast had eroded his body’s insulation. We made our way toward the almost vacant cafeteria. He steadily exited the open glass doors and was outside for the first time since his admission over three weeks before. As the late afternoon sunlight touched his skin, tears sprung to his eyes.

“It must be the medication,” he said.

My sister pulled up a plastic chair and helped him sit down. The plants in the concrete planters around us clearly needed watering. There were food wrappers and a few empty cups lying around, and some of the tables needed a good wipe. But it didn’t matter. We sat quietly while he closed his eyes and drank in the sunshine and the fresh air with an intense wordless gratitude.

“This is amazing,” he said at last, opening his eyes and smiling.

We talked about his progress to date. Ted had lost most of his muscle mass: his already slim 5’11 frame had been whittled down to 145 pounds. He would soon start a very cautious clear fluid diet. We stayed outside for about twenty minutes before Ted asked to return. This was the longest walk he’d taken since his admission and it had sapped his diminished reserves.

We would visit the patio again only once or twice more before his discharge; it was easier for him to take short unaccompanied walks on his floor. During the end of his stay, the monitoring of his vital signs grew less frequent, tubes were removed one by one, fewer and different medications were administered. He was even able to take his first shower. He was being released in more ways than one.

•••

Discharge day. Ted had filled out the necessary papers and questionnaires, been briefed on his diet and pain medication. He also was entirely tube-free at last. As he put on the jeans and shirt he’d arrived in thirty days before (much looser now), I removed my son’s school watercolours from the wall and the cards from the window sill and bulletin board, erased my daily list of questions for the doctors from the whiteboard, packed up the magazines, DVDs, and the rainbow flag. The room soon looked as blank and anonymous as it had been before our arrival.

“Good luck,” said the nurse who had dexterously changed Ted’s dressings, given him injections, and adjusted the IV over the course of the month, all with an artificial arm and hand.

We gave him the still healthy blue hydrangea for the staff room, and waved at the head nurse who was engrossed with paperwork. There was no one else to say goodbye to. Almost all the patients that we’d met in the beginning of Ted’s stay had been discharged earlier. Everyone was going about their business as if this were an unremarkable day.

As we walked toward the elevators, I wondered how many patients had stayed in that ward. How many had lived and how many had died as a result of their operations? Every bodily fluid imaginable had touched those floors. Every kind of person had lain in its beds, and every kind of emotion had been felt—boredom, irritation, anger, fear, despair, agony, exhaustion, relief, even joy—the full spectrum of human emotion and humanity.

The threat of a possible cancer recurrence would linger on the horizon for the foreseeable future, but it didn’t matter. Exactly one year and one week after his surgery, we would finally get married at a private family ceremony in our backyard. As my brother drove us out of the hospital parkade onto Burrard Street into the late summer sunlight, Ted teared up again. “It’s the medication,” he said. “Makes you emotional.”

•••

FIONA TINWEI LAM has authored two poetry books, Intimate Distances and Enter the Chrysanthemum, and a children’s book, The Rainbow Rocket, about a child witnessing his grandparent’s struggle with Alzheimer’s disease. Her prose and poetry appear in over thirty anthologies. Her past work has been shortlisted for the Event creative nonfiction prize and City of Vancouver Book Award, and she recently won The New Quarterly’s Nick Blatchford poetry prize. Her video poems have screened at festivals internationally. She edited The Bright Well: Contemporary Canadian Poetry about Facing Cancer and co-edited the creative nonfiction anthology Double Lives: Writing and Motherhood. She is the co-editor of a forthcoming anthology of creative nonfiction and poetry about marriage, Love Me True: Writers on the Ups and Downs, Ins and Outs of Marriage. Born in Scotland, she immigrated to Canada at a young age with her family. She practiced law briefly before becoming a writer and teacher at Simon Fraser University. www.fionalam.net

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The Consequence of Losing My Damned Mind

Photo By Gina Easley www.GinaEasley.com
Photo By Gina Easley www.GinaEasley.com

By Eze Ihenetu

I knew that he’d emphasized our similarity so that he could disarm me.

“We are both Igbo,” he’d said, through a forced smile.

My thought response: So what.

Despite our shared heritage, he and I were still adversarial strangers because he had gone back on his word. This “brother” of mine was one of the people responsible for my extended confinement to the psychiatric ward. I was not in the mood to extend any form of good will.

I positioned my wheelchair so that I was directly in front of him, and I slowly looked upward until my eyes met his. Arrogance wafted off of him like the heat from my rusted bedroom radiator.

I made ready to make my demand.

“What did I do to make you think that I should spend more time in this place?”

I waited for his answer, radiating irrational anger. I was still under acute influence of my disease, and I was still in denial of this truth.

I lost my patience when he failed to respond, which precipitated the relinquishment of my remaining composure. I bellowed up at him, “You told me that I would only have to stay here for a period of two days. That is what you said to me, right? Now you are telling me that I will have to stay here for two weeks! Two weeks?! Why are you unable to keep your word?!”

He pursed his lips. Then he folded his arms without speaking a word. Was that going to be the extent of his response to my question?

I slammed my right hand down on the wheel of my chair and said, “Promises were made to me and I should expect that you would make sure that these promises will be kept!”

I knew that arguing with the doctor was probably useless, but I needed to say my piece. One of the only positive offshoots of my disease was that I wasn’t afraid to speak my mind. I was standing up for myself in a way that I never had before. Why had I suddenly become so outspoken and brave? Because I was more than certain that I was in mortal danger.

The doctor looked as if he was staring down at a cockroach. He made ready to squash the unpleasant thing that was waiting him to answer.

“Your condition has been deemed more severe than we first thought. And we need more time to observe you,” he said. His accent was thick, more pronounced than the one my father spoke with.

“But I don’t want to have to stay here any longer. I’ve already spent two weeks at this hospital. I need to go.”

“You have been diagnosed with schizoaffective disorder, a very serious psychological condition. We have to treat you and see how you respond. You will be released when we are confident that you are showing progress.”

My heart sank.

While still within the psychiatrist’s purview, I conducted a quick reconnaissance of the dreary, monochrome, and cramped ward. It was divided into two corridors, with the nursing station acting as the point of demarcation. A half dozen uniformed police officers roamed the two corridors and manned the exits. Any attempts to cross the established border that linked the two sides would be dissuaded by the officer who acted as the border’s sentry. The police officers were obviously there to assist the clinical staff with maintaining some semblance of order, but seeing so many armed members of law enforcement cobbled together in such a constrained location rankled my nerves.

The hospital’s inmates walked among these officers, most of whom had spent almost the entirety of their lives existing on society’s edges; a portion of them had spent some time in the New York City prison system. There was a charge that ran through this place. And it could be ignited by anyone here, and at any time.

Prison stints and extended stays in hospitals had not been a part of my past. Why transfer me to this place? If the hospital would have performed some research they would have discovered that I was a graduate of the Boston University School of Business, a trained professional actor, and came from a good family. Every member of my family had either graduated from college or was planning on matriculating into a university. I knew that I didn’t belong in this place, but the gatekeepers who held the keys to freedom obviously thought differently.

“Whatever,” I said, shaking my head.

Now he was looking at me as if he was ashamed. I wanted to dig my fingernails into his sand-colored face and add a few more divots to the hundreds that had already ruined it. I steered my wheelchair away from the doctor in a huff instead, making sure to hold my breath as I passed by the open door of the room that stank of urine and cigarettes.

•••

When it was time for sleep, I lay awake on my hospital bed instead, my diagnosis bouncing around my head.

To his credit, the psychiatrist had tried to take away some of the sting of this life-long sentence when putting forth his diagnosis, saying that I was susceptible to periods of mood instability and mania, and that I was not the only one who was suffering from that particular disease. That explanation was lost on me though, for all I could focus on was the word “schizoaffective” and all of the horrific images that my mind was associating with the term.

Momma had always said that I was the special man in her life. I’d thought that I was special too, believing at one time that I was gifted with a special insight into the whims of others. The psychiatrist had taken the wind out of that sail by handing down the life sentence. If I were to believe the doctor’s words, then it would mean that my extra-sensitive perspicacity was a stain instead of a gift. This fact alone had a shattering effect on my confidence. The diagnosis, in addition to the fact that I was the only person on the unit who was sporting a cast around a recently repaired broken leg, made me feel very vulnerable. When the pain from this realization became too much I stopped resisting the pill, and downed the twenty milligram Zyprexa for the first time.

•••

I awoke later than usual the next day, unable to raise my head from the pillow. I attempted to move my limbs but was unable to because it felt as if the muscles and bones had been filleted from the inside of my skin. My mind was covered in a fog. After a few minutes I was on the verge of tears, thinking that I was going through the first stages of my death.

By early afternoon I realized that I’d overreacted in the morning. My condition was improving slightly with the passage of each subsequent hour. By late afternoon I was sure that I was going to live, though I would remain mired in a Zyprexa-induced stupor for the rest of the day. I went to bed on an empty stomach in the early evening—I’d been too tired to eat anything during that day—vowing never again to ingest another Zyprexa pill before closing my heavy eyelids.

I was myself again the next morning, although still a bit groggy from the day before. My roommate, who stood at an imposing six feet three inches and weighed two hundred fifty pounds, was still soundly asleep in his bed. He had been a docile fellow during the time I’d known him, a fact for which I was extremely grateful.

I exhaled a breath before I sat up and swung my legs from the bed onto the hospital floor, an action that required an inordinate amount of exertion. I encircled the circumference of my wrist with my hand and gasped in surprise—my wrist was replete with bony protrusions. Distraught from my extreme weight loss, I slid down from my bed until my butt hit the floor, then got down on all fours and started some push-ups. I maxed out after ten repetitions and stayed on the floor for few minutes, exhaling deeply. After catching my breath, I pushed myself off from the floor and got to my feet and used my good leg to hop on over to the foot of my bed, where my wheelchair was waiting for me. The light from the corridor was spilling into the open doorway. I steered the wheelchair towards it.

•••

Mental illness is defined by its abnormalities and vicissitudes; the functioning of the mind and body is thrown into complete disarray. One clinician’s proffered reason for this instability was an ongoing “disconnection” between brain cells. His words felt abrasive and accusatory. It was “you” are this and “you” are that. I bristled at the explanation. He had basically asserted that I was the only one responsible for my condition. He’d made no mention nor alluded to other factors that may have been contributed to my behavioral inconsistencies.

When allowed to thrive, the mental illness makes it almost impossible for the afflicted person to establish and adhere to a routine. The people who ran the psych ward made establishing a routine a vital component of the patient’s recovery. Breakfast, lunch, and dinner were served at the same times every single day—my favorite times of the day. Psychotropic medications were distributed at the same time in the mornings and evenings. There was an activity room where the groups were held, although I preferred to watch movies on cable instead of talking about my issues.

•••

Fearful that I could add even more time to my original sentence, I set out to be the good patient, going out of my way to prove that I was quiet, affable, and well behaved. I adhered to all of the standardized rules that had been set, except for the ingestion of the psychotropic medications. I’d hide the pills below the base of my tongue before making sure they met their ultimate fate at the end of each evening: circling down the drain of the bathroom sink.

I was the only patient who roamed around that wing of the hospital in a wheelchair. So I strove to avoid getting into any type of confrontation with the other denizens of this crazy place. My leg always drew attention to me though—the entire bottom half of it was encircled by a neon green cast. The others couldn’t help but be curious about what happened.

When the other patients asked what had happened to my leg I responded to their questions with most of the truth, one that was in direct contradiction to the story that I’d relayed to my care team. I’d told my care team that I’d tried to kill myself because I thought it was what they wanted to hear, and because I was trying to escape being branded with a more severe diagnosis.

Killing myself hadn’t been an option because I was afraid of the consequences. Although I wasn’t a devout Catholic, I was cognizant of the fact that taking my life would result in my being transported to hell for an eternity. And for a man who had been walking along the path that God had created for him, suicide was not a viable option.

•••

What were the actual events that had led to my hospitalization?

I’d locked myself in my room during the last few days of December, 2003, my brain on fire with delusions of persecution and conspiracy. I would try to douse the fire by spending time alone in the darkness, removed from everything and everyone. But the conflagration in my mind would only become more incensed.

My bedroom became a dark cave. The air in the room became stale, but I was content to breathe it in. During those two days I hardly shifted positions while supine in my disheveled bed, staring up into the darkness, while the paranoia, anger, and sadness gripped me. My bedroom, a shambolic mess, was the embodiment of disorganized thoughts.

Mom, Dad, and other family members kept on calling. Their calls brought short stints of reprieve from the loneliness and isolation and provided me with a temporary reminder of who I was. I wouldn’t return their phone calls though. I’d ignore my roommate’s entreaties about my health and eschewed the phone calls of the friends I’d made. I suspected everyone that I knew was working for my enemies.

After I decided that it would become untenable for me to remain in my room for perpetuity, I devised a plan—it was emblematic of my desperation. I jumped up from the bed to dress and gather everything that I could carry, then entwined three sets of sheets together, creating a makeshift rope. I tied one end of the rope to the radiator, parted the curtains, and opened the window. I adjusted my eyes to the sun and threw the makeshift rope through the open window.

I looked down the length of the sheet as it swung to and fro and against the brick wall of the four story apartment building. There were three stories separating me from the concrete floor below, the makeshift rope spanning the length of about two of those stories. No problem. I would scale down the first twenty feet of rope before attempting to jump the last ten.

I was still three stories above the ground when the rope snapped, leaving me to fall the rest of the way. When I crashed down on the cement street that had been made harder and colder by the sub-freezing temperatures, the wind escaped from my lungs. I couldn’t make a sound, but my entire body was screaming from the pain.

When I regained my wind from the fall and the wracking pain had morphed into dull and persistent throbbing, I took inventory of my current situation. The paraphernalia that I’d been hauling on my back was strewn all across the alley way, but my body seemed to be intact at first glance.

My mind was still feverish, and I desperately needed to get away. I thought I could miraculously walk away from this catastrophic fall; I started the process of gathering my things together when I noticed that my right leg was bent back awkwardly. There was also a rip in my jeans, from which escaped the calcified bone of my knee. Blood was upwelling through the hole that had been made by the exposed knee bone, and spilling down the sides of my jeans.

I burst out crying at the sight of my new deformity before desperately flagging down a startled passerby.

“Can you please help me?” I said, sobbing. “Please, please help me.”

•••

I told the story of how I arrived at the facility in Daniel’s room. Daniel, a bearded and excitable young man who had spent a significant amount of time in hospitals, rolled his eyes after I had completed my tale of woe.

“Come on, man,” he said. “That’s nothing. One time I got fucked up so bad that I had to spend four months in a hospital bed.”

Geoffrey, a large man with two missing front teeth, was sitting next to me. Like my roommate, he was a gentle and calm; a smile came easily to him. His wide grin and kindness were gifts of welcome respite from a continuous flood of despair. If you were to run into Geoffrey on the street, you would never have guessed that he was a schizophrenic who had spent six years in a real New York City prison facility.

•••

Geoffrey was with me when my father arrived for his visitation. Dad’s wide eyes revealed his absolute shock at my appearance: I’d sustained a nasty shiner in addition to the broken leg and weight loss. His reaction upon first seeing me in the hospital distressed me, though it wasn’t a surprise. Nothing could have prepared him for the sight of his first-born being confined to a wheelchair, body broken and spirit twisted by demons both real and imagined.

My father’s visit proved to be my saving grace. His presence provided a temporary uplift for my spirit and acted as a precipitating event. A few of the ward’s employees had developed a fondness for me during my confinement; their eyes practically lit up at the sight of the family reunion. The hospital staff knew that my father—dressed in a plaid jacket and carrying a briefcase—would act as my responsible guardian, which placated their concerns about my well-being when I was eventually released from the hospital. There was an up-swelling of hope within me that felt foreign, which contributed to the ward feeling a lot less dreary and depressing on that day.

Dad’s visit had the opposite effect on Geoffrey, though. We were hanging together, watching the first Pirates of the Caribbean movie—the best of the five—in the activity room when he let out a sigh and said, “That’s cool that your dad came out all this way to see you. My family lives right here in the city and ain’t none of them came out to see me.” I could only respond to my friend Geoffrey with silence because I was too absorbed in my thoughts and situation to really consider what he was saying.

•••

A week and a half had passed without my having been involved in some major incident on the floor, another fact for which I was extremely grateful. And I was actually starting to get used to life on the ward. I had settled into the prescribed ward routines and had made a few friends/acquaintances. With only a few days remaining until my release, I was thinking that I might escape this place without accruing any additional scars.

And then my roommate lost his shit one night.

He took offense to something that was said by a visiting nurse, cursed her out, and then spat at her face from a supine position on his bed. One of the officers on duty rushed to the aid of the nurse who’d just been assaulted. I was thankful that the roommate seemed to calm as the dreadlocked and bulky cop firmly established himself at the nurse’s right flank. As I watched the situation quickly unfold, I felt as if I’d experienced whiplash. What would possess a usually docile and gentle man to assault someone in a manner that was vile, and in a place where immediate repercussions would be meted out?

The incident with my roommate, the loss of my job and girlfriend, and other things weighed on my mind when I went before the clinical team/parole board to discuss my progress as a patient. My fellow Igbo man had been given a seat at table. His inclusion in that group would have made me clam up a few days ago. I became a puddle a tears and snot on that day, though, oblivious to the judgments and affirmations of the people who watched me in that room.

•••

It wasn’t until I was given access to my clothes and phone again that I became truly secure in the fact that I was finally leaving the hospital that had been my home for the past month. I found Geoffrey in his room so that I could say goodbye. When I reached up to shake his hand, he said, “I don’t ever want to hear that you have come back to this place.”

I responded firmly. “I promise that I won’t.”

•••

Thirteen years have passed since I left the hospital. I remain a healthy, contributing member of society, who seems to have discovered the perfect formula for managing a chronic precondition—lower doses of psychotropic medicines are an important part of this formula. I’ve secured a master’s degree in health administration, and I’m up for a promotion with the employer with whom I have enjoyed my longest tenure. Those dark days from thirteen years ago have faded to the rearview of my life’s journey, but I still think about Geoffrey every single day.

I hope that he has been able to carve out a life for himself, though I am not optimistic that he has. He and I may have been two mentally ill individuals who’d gotten to know each other for two weeks in the same psychiatric ward, but I was blessed with certain advantages that would make it easier for me to regain the life that I’d nearly lost. Education, a loving family, and the absence of a criminal record all worked in my favor. Geoffrey would have to make his way in the world absent of the advantages that I had. And given the fact that he was a black man, which is a state of being that diminishes one’s prospects for success in society even when you are educated and healthy, his situation is very precarious.

I wish that there were some way to find out that he is all right.

•••

EZE IHENETU is a hospital worker and freelance writer living in Denver, Colorado. Once a teacher and an actor, Eze is confident that writing will be the last stop on his long professional journey. He is currently working on a memoir about his time as an elementary school teacher. You can reach him on twitter at @Eihenetu.

Little Mouse

frozen scissors
By Gina Easley www.GinaEasley.com

By Amy E. Robillard

Because they could not get everything they needed to get laparoscopically, they cut into him. They cut through his fatty tissue and his muscle to get into his abdomen where his gangrenous gallbladder was swollen and bloody and actively disintegrating. When Dr. Robinson tried to remove it, he told us, it fell apart in his hands. When he tried to clip off the bile ducts afterward, Steve’s abdomen was so swollen and bloody that the clips would not hold. They fell right off. Dr. Robinson used a sealant called Tisseal, and as he told us this, he swooped his hand down and back to mimic the motion one imagines using to seal off a hole. All I could picture was a driveway.

Steve had been wheeled into the operating room at one-thirty that afternoon. I had been expecting surgery to last about an hour and a half. While Dr. Robinson was pretty sure from the exam that Steve’s gallbladder was infected, he still believed he could remove it laparoscopically. After I kissed Steve goodbye, I went over to the surgery waiting area and introduced myself to the two volunteers who answer the phones. Steve’s name wasn’t on their official list of surgeries for the day, so they wrote his name at the bottom of the page and noted that I was here. “I’m just gonna run out and get something to eat. I’ll be back soon,” I told them.

I had imagined, as late as that very morning, that I’d be able to teach my classes that day, the day of Steve’s surgery. The hospital was so close to the university, and we didn’t know what time Steve’s surgery was going to be, so I’d just run back and forth, keeping my phone on me in case I was needed.

Walking the dogs that morning before we left, it hit me that my husband was having surgery and I was his next of kin and if I wasn’t there waiting for him, nobody would be. What kind of wife was I? Of course I wouldn’t be teaching that day! Later, when I told Steve’s stepmom Janet this, she laughed. “You’ve never had to do this before, have you?” I said I hadn’t. “It’s a steep learning curve, that’s for sure,” she said.

•••

I grew up in an abusive home, and the further I get from that environment, the more clearly I can identify the characteristics of it that have had a lasting effect on the person I have become. Two things stand out. The first is that I have an overabundance of empathy. This comes, I’ve recently figured out, as a result of being told again and again that it was in my best interest to identify with my abuser.

“Stay away from her,” my mother told me.

By telling me this, my mother was also telling me that the perspective on the world that mattered was my sister’s, not mine, that the person responsible for the abuse was me, not my sister, and that the way to remain safe was to take on the perspective of the other. Your perspective—that your sister is hitting you—is not the one that matters. The one that matters is your sister’s. Appease her.

One result of this overabundance of empathy is that, for a long time, I had trouble with friendships. Simply put, I gave too much and didn’t expect much in return. I took on others’ perspectives on the world and negated my own. I gave and gave and gave until, as happens in every life, a point came when I needed love and care and found that the friends to whom I had given so much were unable to reciprocate. This prompted essential self-care work, including reassessments of more than one friendship.

The second effect of growing up in an abusive environment is that I, as all children do, built my understanding of myself based on the narratives I had available to me, and those narratives I had available were that I was nothing, a nobody, destined to amount to nothing because I was no good, not worthy, stupid, fat, and ugly.

Because of this, I developed an early habit of calculating my chances at things as basically zero, not—as popular reasoning might have it—so that others might encourage me, but because it is what I believed deep in my body was true about me. This means that anything good that happened to me—that happens to me—is essentially icing. This has always gotten me out of existential dramas. I was persuaded early that I wasn’t meant to be here, so I don’t necessarily have a need to make some big meaning of my entire life, to feel that I was somehow meant to be here or that I have a purpose, to feel like I’m here to do something good. Anything I do that is good is better than the nothing I was supposed to have done. Some may read this and characterize me as a pessimist, but I think that those who have been abused could perhaps help me articulate why that’s not quite the case. It’s not that I expect the worst. Rather, I expect nothing.

One effect of this is the ingrained habit of imagining and preparing for my death. My oldest friend Hillary and I have been promising each other since we were kids that, should the other one become incapacitated in any way, the other would swoop in and take care of things. Neither of us is afraid to die. We grew up thinking we wouldn’t make it much past twenty-seven.

•••

Muscles provide strength. We get the word muscle from the Latin musculus meaning, literally, “little mouse.” Our strength comes from what we might otherwise perceive as small and insignificant.

•••

When I return to the surgery waiting area at two-thirty, I see that a few people are gone, but there are still probably ten families waiting for news on their loved ones. The electronic board tells me that Steve’s surgery officially started at 1:59. I settle in to a chair, take out my laptop, and begin working on revising the calendar for my rhetoric course. At about three-thirty, one of the volunteers comes to tell me I have a phone call. Steve’s nurse, Brian, tells me that things are going well and they’re hoping to be able to finish the surgery laparoscopically, but they may have to make an incision if they can’t get it all. This will mean three to five days in the hospital. “We should be done in about an hour,” Brian says. I ask if this would be a good time for me to run home and take care of the dogs. He asks how close I live and I tell him I can be back in an hour. He says yes, this would be the time to do that.

I tell the volunteers that I’m running home and I’ll be back in about an hour. They’re both elderly women dressed in baby pink hospital jackets. One tells me that they leave at four, so when I get back, they won’t be here. “You’ll have to answer the phone yourself.”

Sure enough, when I return a little more than an hour later, the surgery waiting area is nearly desolate. A man and I are the only two still waiting. At 4:45 the phone rings. I look around, as though somebody else is going to answer it. “Surgery waiting area,” I say as I pick up the phone. It’s Brian calling to tell me that they’ve had to cut Steve open and they’ll be working on him for about another hour. “Shit,” I say. “But he’s okay?” Yes, he assures me. He’s okay.

I text the friends who are waiting to hear how Steve is doing. The news that they’ve had to cut him open isn’t good, as it suggests things were more serious than even the doctor had anticipated.

This is not the first time I’ve imagined what my life would be like as a widow. Mostly when I imagine this, I think about how others will respond because I know I have the constitution to be okay. I’m self-sufficient. Icing, remember?

The hour passes without a phone call. It must be because they’re finishing up and they want to call me when they’re finished.

Meanwhile, two friends come to visit for a little while and distract me with hilarious stories about their early vacations as a family. I can’t help but envy them their stories. But they have to leave before too long.

The phone rings. I answer it, “Last one standing.”

“Amy?”

“Yep.”

“It’s Brian. I know your voice by now. We’re still working. We’ll need about another hour.”

Deep sigh. “Okay. Everything okay?”

“Yeah, he’s okay. Things were messy.”

I sit back down in the waiting area. It’s seven. He’s been in surgery for five hours. The lights go out in the waiting area.

I’m sitting alone in the waiting area. In the dark. My husband has been in surgery for five hours. I’m beginning to get scared.

Instead I get angry. I think about all the love and care and empathy I’ve given over the years since I arrived in Illinois. So much love and empathy. And none of it is coming back to me right now as my husband is lying cut open on an operating table and I’m all alone.

Later, with a clearer head, I’ll think back on this moment and say to myself, well, what could you expect? Your friends didn’t know you were sitting there alone in the dark.

And the answer, of course, was nothing. Of course I could expect nothing.

•••

As he recovers, Steve needs to be reminded every so often that Dr. Robinson cut through his abdominal muscles, so things he used to take for granted are going to be hard for a while. The first time he sneezed was particularly painful. He’s sneezed a total of five times since the surgery.

Cutting through muscles is, I imagine, a gruesome task. As they heal, muscles that have been severed settle differently.

As I walked the dogs the morning before Steve’s surgery, it hit me that I could no longer rely on my own habits of thought, on my own muscle memory, to get me through this kind of situation. I couldn’t just maintain my identity as some kind of teacher hero who manages to teach her classes even while her husband is under the knife. I had to accept that, despite the earliest and most profound lessons of my life, I am important to people and that this recognition brings with it responsibilities that I cannot simply brush off with claims that my students need me. Until Steve’s surgery, when I was the one person in the world responsible for the well-being of another human being, I had never had to puncture, let alone cut, that muscle memory.

I don’t really trust myself to be that person for Steve or for anyone, really. I have never wanted to be the one solely responsible for anything, but especially another person’s life.

My muscle memory has been cut, just this once. It may not be enough, but it’s a start. The cut will send the little mouse scurrying just a bit, into cracks and crevices of my constitution that I don’t even know are there, settling perhaps the tiniest bit off-kilter, surprising even me.

Things I’ve taken for granted may be harder for a while.

•••

AMY E. ROBILLARD is a writer and a teacher of writing at Illinois State University. She’s a regular contributor to Full Grown People. She and her husband Steve are the guardians of two very special mutts, one named Wrigley Field, and one named Essay. They all love the Cubs.

Read more FGP essays by Amy E. Robillard.

Something

bandagedheart (1280x1262)
By Gina Easley www.GinaEasley.com

By Penny Guisinger

I held his hand as we crossed the street from parking garage to hospital. The black-and-white lines painted on the asphalt guided us to the automatic door that whooshed us into the building. He was eight years old, and his fingers felt sticky from breakfast, sugar, and sweat. I let go of him only for a moment so I could check my watch. We were on time. Neither of us wanted to do this, though I had tried my best to spin it as a grand adventure.

“You’ll get to see a cool video of your own heart,” I had told him at least two hundred times leading up to this day.

“I know, Mama,” he had come to say. “I know.”

“Don’t you think that will be cool?” I had said it again that very morning at the Dunkin Donuts.

He had plucked a sugar-covered chocolate donut hole from a bag, and said, “Yes.” He popped it in his mouth and licked the sugar from his fingertips. “Very exciting.” He was like this all the time. Even his understatements were understated. He endured me.

I had known what would happen when I told his doctor what Owen was regularly saying. “He says his heart feels like it’s beating funny, and sometimes his chest hurts.” You can’t say those words to any responsible medical professional and not set this chain of events in motion. Though our doctor had said all the appropriate “I’m-sure-it’s-nothings,” she ordered an x-ray, EKG, and an echo, and referred him to a pediatric cardiology practice no fewer than one hundred and ten miles from our rural home.

“Oh, look,” I said, finding the name of the practice on a directory. We had entered the cool and quiet of the medical building. The floor glistened beneath our sandals. “We need to go to the fourth floor. We get to take the elevator. Want to press the buttons?”

“Yes,” he said, scanning the length of the hallway. “I do.” He was carrying Tiny White, the floppy, dirty, white bear with a blue hat and scarf that Santa brought to our house many holidays ago. The bear didn’t exactly go everywhere with us, but he was pressed into service for special events.

In the elevator, he reached up and pressed the four button. The doors dinged and closed and the floor started to rise. Owen smiled. “I like elevators,” he said.

To call our area “rural” doesn’t quite capture the experience of living over a hundred miles from the nearest Starbucks, airport, shopping mall, or franchised restaurant without a drive-up window. In easternmost Maine, we all drive to Bangor to do anything much of anything. We grocery shop, do our banking, and fill our prescriptions locally, but if we need running shoes, jeans from someplace other than Walmart, a roller rink, or to see a medical specialist, we all make the trip across Route Nine, through the dense, endless wild. So to Owen, an elevator was a relatively big deal. A trip to Bangor was a celebration, and I was determined that our day would include some fun to underscore that this was nothing.

We found the right door and let ourselves into the waiting room. The receptionist gave me a clipboard and a pen, and Owen flipped through a Lego magazine while I wrote his name and birthday on at least nine different pieces of paper. Then we waited together in side-by-side chairs with wooden arms and scratchy upholstery. I ran my fingertips across the surface of his back, scratching him through his tee-shirt. He had picked out a Lego Star Wars shirt especially for today. With his tee-shirt, Tiny White in his lap, and the Lego magazine opened across his knees, he looked exactly like who he was, and it was my own heart that assumed an irregular rhythm.

In the first room, where they did the EKG, he told the nurse or the PA or whatever she was that he had an irregular heartbeat. She nodded, looked at me, and said, “He’s right. He does.”

I thought about how our family doctor had looked at me and said, “I’m sure it’s nothing,” and for the first moment since she said that, I doubted. This doubt would not linger past the appointment’s end, just an hour later.

•••

While we waited for the next room, for the next nurse or PA or whatever she would be, I said to him, “Let’s do something fun after this.”

He was looking at something. What was it? The Lego magazine? A book? The television? The floor? I have no idea, but I know he said, “Okay, Mama. Like what?”

“I don’t know,” I answered, trying to think of something we could do in Bangor, something fun, something different. It was summer in Maine. There has to be something.

Something, yes, but this was nothing. It would be nothing.

The echocardiogram was, as predicted, incredibly cool to him, but only for the first ten minutes. “Is that my heart? How is that my heart?”

The black and white, fuzzy images on the screen, constantly in motion may as well have come from a probe on the moon or from distant Tatooine, so unlike were they from any images we understand of the human heart. It was not pink, not red, not even heart-shaped. No black outline, no arrow through it. Its valves opened and closed the way a praying mantis lifts and lowers its legs, and the cross sections were bell-pepper-shaped.

“I don’t see how that’s my heart,” he insisted once more before drifting into the spell of the cartoons on the television high on the wall, strategically placed for viewing from the table. Then he added, “These aren’t very good cartoons.”

The echo tech did her job by not interpreting anything. She didn’t share any reassuring commentary. It was like the ultrasound I had when I was pregnant with my oldest, Abby. Because of her positioning in my uterus, I had a lot of ultrasounds throughout that nine months, and most of the techs were like tour guides of the baby, pointing out toes, elbows, her heart, her little space-alien movements. But one tech was wordless throughout, creating an absence of sound that was louder than any noise I had ever heard. She spoke only at the end when she said, “Do you have an appointment with your doctor this afternoon?” Panic set in, and I went to that appointment already in tears, prepared for a terrible piece of news that was, of course, nonexistent. It was just a tech doing what they are supposed to do: collect, not interpret.

There, next to my son, who was complaining about bad cartoons, I listened to the silence of the tech. She was clicking on her keyboard, capturing measurements, snatching images of Owen’s heart doing various tricks. And I knew. I knew it was bad. I knew it the way I know that there is gravity and that the sun sets and rises each day and the way I knew that I too would eventually die. The scenario spun out in my head—he would need a transplant. This would be our life now. That very day, everything would change and whatever fun thing I thought of to do that afternoon might be the last moment of fun we would have for years, or for months, or maybe forever. This news sank into my bones like a cold front. I checked my watch again. I interpreted, then misinterpreted. We had been in here too long.

•••

It gets hot in July, even in Maine, and it was a day too warm for go-karts. But go-karts were what we decided to do. I drove us across the bridge from Bangor to Holden, following a rush of summer traffic; tourists heading to Bar Harbor, heading to the coast. Owen sat behind me in the back seat, and together we watched for the signs for the go-kart track I had found online. I spotted it. “Is this it?” Owen asked, leaning forward against his seat belt for a better look out the window.

“Yes!” I almost shouted. “Let’s have some fun!” My emphasis on that last word was, perhaps, much more enthusiastic than the situation called for. But he was eight, and I was his mother, and we were going to have some fun.

It was about ninety degrees, and the go-kart track was in full sun. The young attendant who sold us our tickets asked how many minutes I wanted to ride. Rides were sold in seven-minute chunks of time, so I bought three. I looked down at Owen and said, “Let’s ride for twenty minutes the first time. We can go again after that if we want.”

He looked across a grassy expanse that sloped down to the fenced-in go-kart area. A fleet of small vehicles, with lawn-mower-style engines, was lined up, ready to go. Not a single other driver was on the track. We had the entire, squiggly-shaped road to ourselves.

Owen was too small for his own kart, so we were assigned a two-seater. The attendant showed us how to buckle ourselves in, how to steer, and how to brake, then he pulled on the start and the engine noisily fired up. I pulled onto the track, got a feel for the quick, tight steering. With hot wind now blowing through our hair, I stomped on the accelerator, and the kart responded by quickly coming up to racing speed, but there was nobody to race.

Owen gripped his seat. “Mama, I’m not sure you should go this fast.” He was like this all the time: a worried, middle-aged little man in dark-rimmed glasses.

I leaned into a tight turn, felt the tires grip the track. “We’re okay, Owen,” I reassured. “Are you nervous?”

He nodded but was grinning a grin that I took as evidence that I was being an awesome mom in the face of a hard day. We were having fun. His expression proved it, even though his little knuckles were ivory-colored and he had that edge in his voice when he said, “I think you should slow down so we don’t crash.”

I eased off the accelerator and slowed as we took a turn. The breeze stirred up by our forward motion fought the heat. We settled into a comfortable speed, and I steered the vehicle around and around the track. Owen’s body seemed to lighten as he relaxed into the activity, though I did not sense any actual joy. He watched the scenery pass by—the entrance gate, the parked row of karts, the booth where the attendant sat, the highway, the entrance gate again—over and over and didn’t say anything. I sped up and slowed down and leaned over and yelled over the noise, “Isn’t this fun?”

He met my eyes with his, grinned, and nodded, then went back to watching things go past us. His heart, I knew, was beating its irregular rhythm under his Star Wars tee-shirt and moving blood through all the veins in his small body. It ran through the small veins in the fingers he was using to grip the sides of his seat, though his grip had become less fierce. His small heart—how small was it? They say the adult heart is the size of a fist, but perhaps that is an adult fist. Perhaps his heart was the same size as his little, seat-gripping fist that was given its gripping ability by his irregular little heart. Perhaps it was my adult-fist-sized heart that made me grip him this tightly.

Another family appeared at the ticket booth, buying some turns in the go-karts. I thought that this was good, that it would be more fun if there were some obstacles, some challenges, some easy, fun competition. I navigated two turns while watching the group walk to the gate. They waited there. The attendant did not make a move to let them in. I wasn’t sure how many minutes we had been spinning around these arcs, but it seemed that we had a lot of time left.

The other group watched us through the chain link fence, and I felt obligated to pick up the pace. Owen’s knuckles grew white again, but he didn’t say anything. Members of the other group shuffled their feet, glanced at their wrists or their phones, the sun hot on their bare heads. We flew past them, past the parked fleet, past the attendant, letting the hot July wind blow across our bare heads.

“Are we almost done, Mama?” Owen asked me, but I couldn’t hear him over the din of the engine, and he had to say it again. If he had been wearing a watch, he might have checked it.

“I think so,” I shouted back, then added, “This is fun, isn’t it? Do you like it?” I reminded myself to stay in the moment, to experience this summer-in-Maine joy, to stop interpreting and do some more collecting. In a few weeks, Owen would start fourth grade. Summer was short. And here we were, with this new clean bill of health—he did not need a transplant. “A lot of kids have arrhythmias like this one,” the cardiologist had told me. “He’ll grow out of it.”

He will, I know, grow out of all of this. He will grow out of summer and Lego tee-shirts, and go-karting with me. I should be grateful. We should finish this joyous ride in triumph, then go inside the pizzeria next door and order the largest one they make with whatever toppings we want. We should drive home with Owen’s favorite band, The Beatles, cranked all the way up and with both of us singing. We should be awash in summer-healthy-heart joy. I pressed the gas pedal and took a turn as fast as I could. The g-forces pressed Owen into my hip. The wind flattened his hair against his forehead, and he squinted up at me, still hanging on tight to the seat, and I thought, “This is something.”

•••

PENNY GUISINGER’s first book Postcards from Here, published by Vine Leaves Press, will be released on February 16th and is available for pre-order on the 1st. In 2015, one of her essays was named a notable in Best American Essays, and another was nominated for a Pushcart Prize. Other work has appeared in Fourth Genre, River Teeth, The Rumpus, Guernica, the Brevity blog, Solstice Literary Magazine, Under the Gum Tree, multiple anthologies, and other places. She is an Assistant Editor at Brevity Magazine, the Founding Director of Iota: The Conference of Short Prose, and a graduate of the Stonecoast MFA Program at the University of Southern Maine. To learn more, visit: www.pennyguisinger.com.

 

Sepia

flower
By Gina Easley www.GinaEasley.com

By Cora Schenberg

August 8, 2012. When I get scared, I lose my senses. I know that the walls of the clinic are acid green, but my eyes take in sepia.

“I’m glad you came in,” the doctor says. “Post-menopausal bleeding is never normal.”

Two weeks ago, my husband, son, and I were at the beach. I went into the bathroom to put on my bathing suit and found a spot of blood. I tried to ignore it. I figured the bleeding would stop by itself. When we got home and it hadn’t stopped, I called the clinic. The receptionist said my doctor was on vacation. Would I see Dr. A instead?

So here I am, bare-bottomed on crinkly paper.

“What do you think is wrong?” I ask the doctor.

“Unfortunately, I can’t tell anything from your exam. You’ll need to see a gynecologist. But I wouldn’t worry. It’s usually polyps or fibroids, which are benign.”

I had fibroids twenty years ago. Getting rid of them took major surgery and a six-week recovery. I don’t have time for this. I teach in the German Department at University of Virginia, and the semester starts in a few weeks.

Driving home from the clinic, I fall into a fantasy, where instead of undergoing a messy medical procedure, I can make time unspool, so the bleeding simply un-happens. I wouldn’t mind going back to April of this year, when our youngest nephew became bar mitzvah. The whole family was present and well. My husband Wade and I led the congregation in a favorite hymn. In a picture Wade’s sister sent, Wade, our son Gabriel, and I stand grouped around the bar mitzvah boy. Why can’t we step back into that picture?

But is that picture really where I want to end up? Gabriel, at seventeen, looks great, dwarfing all of us by at least a head and a half, his thick brown hair tousled, grin full of snark and confidence. But what about Gabriel’s parents? Mom’s got crow’s feet. Dad’s soft blue eyes show exhaustion; his once ginger hair has gone brown-grey. If we’re travelling in time, why not go back to when Wade and I met, in 1979? Or would it be better to return to October 16, 1983, when we said our vows before a rabbi? I remember how my hand turned radiant after Wade placed the ring on it. But then we didn’t have Gabriel. I wouldn’t want to live without him.

During my musing, I’ve been driving, and have now arrived at our house. I’m telling myself fantasizing won’t solve anything—besides, un-happen isn’t a word—when my teenager runs out, barefoot, to say that our friends the Smiths just called. “They’re coming for Shabbat dinner. Can you make lemon-ginger chicken?”

•••

Following Dr. A’s recommendation, I set up an appointment with my gynecologist. After examining me, Dr. B says, “I didn’t see any red flags in the exam, but let’s get you an ultrasound, to make sure you’re okay.”

A week later, she calls to say that the ultrasound tech “didn’t do a very good job,” so the picture is fuzzy. “However, it did show some fluid in the cul-de-sac between your uterus and rectum.”

“I’ve got a cul-de-sac? Like a dead-end street?”

The doctor laughs with me. But when I ask what caused the fluid, I hit a true dead end.

“I don’t know. But I’ve made you an appointment with a specialist, Dr. C. He’ll do the ultrasound himself, so there won’t be any problems.”

She gives me the date for Dr. C’s ultrasound: A month from now.

•••

The semester starts in a week. I feel exhausted all the time, and the bleeding is getting worse. I call Dr. D, my family doctor, to see if I’m anemic.

“Oh, I doubt dribbling for a month would make you lose much blood,” Dr. D says. “But sure, I’ll test your hemoglobin.” And a few minutes later, she reports, “Just as I thought—everything’s fine. And I see you’ve got an appointment with Dr. C. He’s the best.”

“But I have to wait another three weeks to see him.”

She smiles. “If he’s making you wait, it’s because he thinks your problem’s not serious.”

I’m fifty-five years old, but at this moment, I might as well be three. At the thought of contradicting the doctor, I picture myself as a pathetic, whining kid: but it hurts!

•••

The specialist, Dr. C, tells me I’m fine. “You’ve got a few fibroids, maybe a slight hormonal imbalance. But that’s not what’s making you bleed.”

“What is making me bleed, then?”

“We have to find out. I’m sure it’s nothing serious.”

Those words again. The doctor recommends a dilation and curettage, or D&C. “Very simple, a routine procedure.”

What planet have I landed on, where it’s “simple and routine” to be placed under total anesthesia while a doctor opens up and scrapes my uterus?

“My colleague, Dr. E, can do it,” Dr. C says.

•••

Sept. 16, 2012, a.k.a. Rosh Hashana, beginning of Jewish New Year 5773. At services, I stand between Wade and Gabriel. “Avinu Malkhenu, shema kolenu,” we chant. Our Father, our King, hear our prayer. A Hasidic legend tells us that on this day, the earth rises to the level of heaven. I imagine standing on tiptoes, whispering in God’s ear: “My doctors say I’m fine, but I don’t feel fine.” My belly aches and pulses. The holiday forces me to remember there’s no playing with time. We all petition God to inscribe us in the Book of Life for the coming year. But looking around, I see empty places where friends once sat. I wrap my prayer shawl around my shoulders and sink into the baritone voices of my husband and son.

•••

Dr. E’s office calls to say they’ve scheduled my dilation and curettage for September 26. I look at the calendar, see that day is Yom Kippur, and start to ask for a different date. But then I realize that since the surgery’s not until afternoon, I can attend most of the morning’s services. I write to the rabbi, explaining my situation. He writes back, promising prayers. And the Ritual Committee offers me an Aliyah—the chance to bless the Torah before the cantor reads from the scroll.

On Yom Kippur, I wake refreshed and energized, ready to pray the old melodies with lightness and joy that I’ve not felt in a long time. After the Torah reading, my family and I wave good-bye to the rabbi as we leave the sanctuary.

•••

Dr. E reports that my dilation and curettage was unusually difficult: “Your cervix was so tight, I hardly got any tissue at all. The good news is I’m pretty sure you don’t have cancer. But I’d like to do an endometrial biopsy to be certain.”

I agree to the biopsy; Dr. E. calls a week later.

“The tissue I got looks fine. You don’t have cancer.”

“You’re sure?”

“Positive. Malignant cells are very prominent. When I biopsy someone with cancer, all this brown stuff comes tumbling out.”

I shudder at the complacency with which she paints this horrid picture.

“What about the bleeding?” I ask.

“That’s a mystery. Honestly, Cora, we might never find out why you’re bleeding. Let me think about your case and get back to you.”

•••

As much as I like to play with time, I make an effort not to wish my life away. In college, we tended to live from one break to the next. We’d just gotten back from winter vacation when my freshman roommate Diana said, “It’s only two months till spring break!”

I did not tell her my thoughts: following spring break, it was only six weeks till summer, and from there, just four years till graduation, forty till retirement, and just a little while before we get to die.

Now, with the pain and bleeding, I can’t help wishing away work days. Teaching exhausts me. The only part of the day I enjoy is my bedtime ritual. It starts with a bath. The warm water uncramps my gut, washes away the blood. After the bath, I plug in my heating pad and lie down beside Wade. We hold each other and watch something innocuous on TV. Often, Gabriel joins us. I’ve gotten to love the Home and Garden Channel. People choose and buy houses. Sometimes they fix the houses up. No one is sick or in pain. Often, the houses are located in lovely places, like Hawaii.

•••

A week after my biopsy, Dr. E phones. “I’ve thought about your case. You have two options.”

Option 1 is a second D&C, this time using a camera called a hysteroscope, so the doctor can pinpoint the exact location of my problem and remove the cause.

“Option 2 is an ablation,” Dr. E tells me. “It means removing the lining of the uterus. Take a few days to decide which you prefer.”

I research the web and talk to Wade. In the end, I tell the doctor I choose the D&C, the less aggressive procedure. Why rip apart my uterus when I don’t know what’s causing the problem?

“But a D&C isn’t one of your choices,” the doctor says. “It didn’t work last time!”

“But you said you’d use a camera—”

“I don’t think so,” says Dr. E. “Your options are an ablation or a hysterectomy.”

My breath stops. Could I have gotten this wrong? Yet surely I’d remember if she’d said hysterectomy. The word sends a chill through my body. How can this doctor suggest removing my uterus or its lining without knowing what my problem is? And how can I trust her with my body if I can’t trust her to remember her own words?

I have no idea what to do next. But the bleeding and cramping keep getting worse. I’ve got to do something.

•••

I hear about a therapist offering a workshop for people with chronic and/or terminal diseases. I figure three months qualifies my problem as chronic and sign up.

“You are in charge of your healing,” James, the therapist, tells us. He does not say to distrust doctors or medicine, but rather that each of us should stand vigil over our health professionals, since we are the experts on our bodies.

“Get a second, third, and fourth opinion,” James advises. “Use different types of healing. When my wife had cancer, she worked with Western doctors but also consulted an acupuncturist.”

I tell James I don’t have the strength to do what he suggests. He says that’s the hard part—no one with a chronic disease has energy. “But have your current doctors helped you?”

“Not really.”

“Then you need to fight.”

•••

I go back to Dr. D and ask her to recommend another gynecologist, and she refers me to Dr. F. I send Dr. F my chart, now two inches thick, along with a note detailing the past four months.

“How terrible!” Dr. F tells me during our consultation. “I’m so sorry you’re going through this.”

I heave a sigh of relief, hold back tears of gratitude. She’s the first of my doctors to express empathy.

After looking at my record, Dr. F asks two questions: “When Dr. C performed your ultrasound, why didn’t he use a contrast dye? And when Dr. E did the endometrial biopsy and D&C, she got no tissue, or as good as none. How can she say you don’t have cancer?”

“Do you think I have it?”

I remember the day I learned about this disease, in seventh-grade science.

“When a person gets cancer, some of their cells go bad and start to kill the good cells,” Mr. Ringel, the science teacher, told us. “More and more cells turn cancerous. The process doesn’t stop until the host is dead.”

Host? A host welcomes guests. How can we use the same word for a body invaded by rogue cells? And am I now harboring this illness that killed my grandparents and later struck my mother and her siblings?

“You’re probably okay,” the doctor says. “But if you were my patient and I had such little data, I would not feel safe assuming you didn’t have it.”

The doctor recommends another D&C. Since she no longer performs surgery, she refers me to her colleague, Dr. G.

Dr. G can’t see me until December 19—a month away. When he finally examines me, he concurs that my uterus is enlarged and a second D&C is warranted.

“Good. Can we do it this week?”

“Unfortunately, my schedule is packed, and with the holidays, we’re short-staffed through New Year’s. I can schedule you for January 9.”

I bristle at his banalities: schedule packed, holidays.

•••

Dec. 22. A bunch of us are grouped around the breakfast bar at friend’s Christmas party. A skinny, bespectacled guy, a friend of the hosts, says, “Did I ever tell you how I killed my first patient?”

We all prick up our ears.

“So, anyway,” Dr. Skinny-Bespectacled says, “I’m twenty-five, I’m a resident, and I’m a real idiot, you know? They’ve got me paired up with this other newbie, Fred. They send us in to—I dunno, do something to the oxygen tube on this guy—the guy was thirty years old and dying of cancer, right? A real tragedy. So anyway, no one tells us how to do this thing, we’re both falling over ourselves, then all of a sudden, Fred says, ‘I think he stopped breathing.’ It was awful. Now you’ve gotta bear in mind that this guy probably wouldn’t have lived much longer, anyway—”

In my head, something kills the volume on the conversation. All I hear are doctors’ voices: Cora Schenberg’s death was a terrible tragedy. But of course, she’d have died anyway.

•••

If offered a wish now, I’d ask for time to speed up. I want the surgery done. But time has slowed to a standstill. It creeps toward Christmas, fa-la-bleeping-la. My family and I hide away from the stores, the hysteria. Wade and I are too tired to throw our usual Hanukah party. On Dec. 31, we’re all asleep before midnight.

•••

January 8, 2013. The night before surgery, the cramping increases. It feels as if something is fighting to get out of my belly. In the morning, I’m filled with relief as we drive to the hospital.

Wade is waiting when they bring me back from the OR.

“The doctor just left. He wasn’t able to complete the surgery.”

“What?”

“He said he got in there and nothing looked like in the ultrasound. He was afraid he’d punctured your uterus and gone into a false channel.”

I don’t know whether to cry or curse. False channel. Cul-de-sac. My body is not a road!

“So what’s next?” I ask Wade.

“The doctor’s going to consult with some colleagues and call you on Monday morning.”

Dr. G does not call on Monday morning. That afternoon, I ring his office. The receptionist tells me he’s out of town. Which words to choose so that this woman will hear me and make sure the doctor gets my message?

“I was in menopause for four years,” I say. “Six months ago, I started bleeding. It keeps getting heavier, and I’m in constant pain.”

“That’s awful!”

“It would really help me to know the doctor’s plans.”

Tuesday morning, Dr. G is still out of town. I leave another message.

By Wednesday morning, I’m desperate. I’ve had to buy yet another family-size box of feminine hygiene product. I know it will just make things worse if I call and yell at the receptionist.

The phone rings; it’s Dr. G. After apologizing for his long silence, he says, “I just got your report back from the pathology lab, and I’m afraid the news isn’t the best.”

Wade steps into the room just as I repeat the doctor’s next word: malignancy.

“You’re saying it’s cancer. What kind? What stage?”

“We don’t know. It’s in your uterus or your cervix, maybe your ovaries. I was surprised there was enough tissue for them to find anything. We’re sending you to the cancer center at the University Hospital. They’ll take care of you from now on.”

I hang up the phone, run into Wade’s arms. I try to feel the warmth of his body, but I’m frozen in panic. I think of all the months wasted, going from doctor to doctor. I remember my friend Mary, who developed symptoms like mine years ago. Mary’s doctor diagnosed her with fibroids, prescribed a painkiller, and said to come back every six months for monitoring. One day, a mutual friend called to say Mary had cancer. Rather than presenting, Mary’s cancer had slunk in silently and set up camp. Free from a doctor’s intervention, the twisted cells multiplied until they pushed past the walls of her uterus and laid claim to Mary’s lungs, heart, and back. She was dead six months later.

“I hope those doctors haven’t killed me,” I say, into Wade’s shoulder. I suddenly remember a cartoon the New Yorker ran just after Mary died. It showed a doctor in a lab coat, doing a silly dance. The caption showed what the patient on the exam table was saying: “Sounds like dance? No, dancer! Cancer! I’ve got cancer!” At the time, I wondered if Mary would find this cartoon funny or think it the most tasteless thing in the world. Since I wasn’t that patient, I thought it wasn’t up to me to say. But now I am that patient, and I hope Mary laughed, because I think that cartoon’s funny as hell. I hold Wade, laughing and crying, until it’s time to leave for work.

•••

February 5, 2013. The instant I meet my oncologist, Dr. Cantrell, time speeds up. Dr. Cantrell looks no older than twenty-five. A slender woman with a brown ponytail and a big, toothy grin, she shakes my hand with a strong grip. After hearing my story, she says, “I’m so sorry you had to go through that. Sometimes even very good docs miss these things. Now, the first thing we need for you is an MRI.”

“When?” I ask, expecting the usual wait.

“When do you get done teaching this afternoon?”

“At two.”

Dr. Cantrell turns to her nurse, Peggy. “Schedule Ms. Schenberg for an MRI after 2:30 today.”

Noticing my expression of disbelief, she grins. “You’ll find things move pretty fast around here.”

A week later, Dr. Cantrell calls with my results.

“Your ovaries and cervix are fine; the cancer’s in your uterus. I recommend a hysterectomy. Can you clear your schedule for surgery on Tuesday?”

“I’ll call my boss now. How much bed rest will I need?”

“Most people go back to work in a few days.”

“How–”

“In most cases, I make a couple of tiny incisions, about a quarter-inch long, then I can remove the uterus vaginally. It comes out like a baby.”

No! I want to protest. Not like a baby. My baby filled me with awe. My baby did not try to kill me.

“Now, sometimes,” Dr. Cantrell continues, “the uterus gets enlarged from inflammation. If it’s too large to remove vaginally, I’ll have to make an incision. That recovery can take four-to-six weeks.”

I say nothing to this, my head still swimming

Before hanging up, Dr. Cantrell teaches me three new words: Endometrioid. FIGO. Clear cell.

After surgery, she’ll order a pathology report. If I have endomitrioid, FIGO grade 1 or 2, my tumor will be classified as slow-growing and non-aggressive, and require no treatment beyond the hysterectomy. However, if clear cell cancer—grade 3—is present, I’ll need chemo and radiation, too.

“Clear cell,” I repeat. These words sound so innocuous. But on second thought, clear cells would be the undetectable kind that sneaks up on an unsuspecting host.

•••

Gabriel joins Wade and me in our bedroom as we watch television.

“Mom,” he says, “I know you don’t want to make this cancer thing public. But is it okay if I talk to my really good friends?”

“Of course,” I tell him. “I’m taken care of. You and Dad need all the support you can get.”

•••

February 12, 2013. The orderly wheels my stretcher into the operating room, where Dr. Cantrell, already wearing her mask, greets me with a hug. Waiting for the anesthesia to work, I place my hands on my lower belly, murmur a silent good-bye to my womb.

I wake to whispers. Someone repeats one word several times before I realize it’s my name and look toward the speaker.

“Your surgery went well,” Dr. Cantrell says. “It looks like stage 1—no sign that the cancer spread. I’ll get your pathology report back in a week or so.”

“It hurts.”

“Unfortunately, I had to make an incision. It’ll take a bit longer to heal, but you’re in great shape. You’ll be fine.”

Flowers, care packages, and cards are waiting when Wade brings me home from the hospital. Gabriel hands me a stuffed penguin he and Wade got me at the hospital gift shop. Friends from the synagogue tell me I’m on the prayer list and ask when they can come by. My sister Kathy arrives to visit and shop and cook for us.

A week later, Dr. Cantrell phones.

“Cora, I’ve got your report.”

“Good news, Doctor?”

“Remember I told you about those three kinds of tumors? I’m afraid you’ve got clear cell–a grade-three.”

The room turns sepia. I struggle to find my voice. “What happens next?”

“We’ll give you time to heal, then, if you agree to it, we’ll start chemo and radiation.”

“How come I need both?”

“This is all based on studies. The latest ones show that when the cancer returns, it usually comes back to the same site. So we radiate that area, to kill any cancer cells the surgery might have missed.”

“And the chemo?”

“The chemo will get any cancer that might have spread into your system. I know I’ve given you a lot to think about. Take a few days to decide what you want to do. Call if you’ve got questions. I’ll support any decision you make.”

Wade, Gabriel, and I sit around the table, not speaking. I try and fail to feel the warmth of their presence or register the soft light from the lamp above the table.

•••

Dr. Cantrell teaches me more new words. The radiation she prescribes is called brachytherapy–placing the radiating source near the former site of my tumor. She explains that with the radiation confined to a small area, I shouldn’t expect side-effects. Yet what I hear in the sound of “brachy” is “break” and “broken.”

I have to train my mouth to get around the words Carboplatin and Paclitaxel, the chemo drugs Dr. Cantrell would use. Their syllables feel arbitrarily thrown together, like bad architecture. Dr. Cantrell does not hide the fact that chemo is poison. While it kills cancer, it also attacks other fast-growing cells, like those in the stomach lining and hair follicles. It wipes out both red and white blood cells, disabling the immune system. I’m reminded of generals who hire mercenaries—thuggish louts who wreak havoc, but get the job done. I sign off on both the chemo and radiation.

•••

February 25, 2013. I’m off from work for at least another month. The chemo and radiation won’t start till April. Meanwhile, healing takes place in the silence that fills our house when Wade and Gabriel leave for work and school. I depend on my body to tell me when to eat, sleep, poke my nose outside for air, and sleep again. From my rocking chair in the living room, I take in butter-yellow walls, a glass-fronted bookshelf holding our favorites, and three cats asleep on the sofa.

I don’t yet know that in September, when my family and I join the congregation for Rosh Hashanah, I will be pain-free, my scar a faint line. That Dr. Cantrell will call me her star patient and say to come back in four months instead of three, since everything looks so good. For the moment, I’m content not to know this. To let time to do what it does, without expanding or contracting, speeding up or slowing down. I’m grateful to rock in my chair, as the winter sun strengthens.

Note: Some names and physical characteristics have been changed to protect privacy.

•••

CORA SCHENBERG’s work has appeared in Brain,Child, Utne Reader, the Delmarva Review, C-ville Weekly, and The Hook; she has also read essays on WVTF radio (NPR Roanoke) and had three plays produced in Charlottesville’s Live Arts Theater (Summer Shorts Festival). She holds a Ph.D. in German literature from the University of Virginia, where she currently teaches.

Manning the Tollbooth

hallway
By Martin Howard/ flickr

By Jon Magidsohn

It’s a cement and gray-brick structure, unnaturally square, six stories of uniformly tinted windows, compartmentalized and looming large over the winding driveway. Wide, sliding glass doors open onto a pale foyer large enough to park several ambulances. On the right, busy administrators in matching navy-blue jackets sit behind a registration desk; on the left, a café with odors staler than the bodily smells upstairs in the wards. An unused staircase hugs the wall as visitors and faceless figures in teal-green pyjamas crowd the elevators. Blue and silver signs point toward mysteriously withdrawing wings named after equally mysterious benefactors. The ceiling is speckled with plate-sized pot-lights casting a ghostly glow that leaves no shadow along the grey corridors.

It could be any hospital anywhere in the world. A monument to Marie Curie. But this one is in Bangalore, India—where my family and I have lived for the last year and a half—squeezed into a parcel of land between a shopping mall, a community college, and a housing estate all served by a dusty four-lane highway that connects the airport to the center of town. Outside, the road is lined with crumbling pavement and idling auto-rickshaws; inside, it’s eerily absent of indistinguishable announcements or “Code-Reds,” and everybody seems unusually comfortable being there. Both inside and out, like on any Indian street, there are people everywhere.

Never has a hospital seemed so frighteningly familiar yet shaded with a disquieting foreignness. Not the most comforting scenario in which to bring my unwell son.

He’s scheduled for an endoscopy, admittedly not the most intrusive of procedures but not without concern considering the involvement of general anaesthesia. The source of his debilitating stomach aches needs to be found, now several years—and three hospitals in as many countries—after the pains first surfaced.

A few weeks earlier, the scan and blood tests all came back normal. Six months prior, we’d eliminated gluten from his diet, before that dairy. Four years ago, we ruled out IBS and Crohn’s. The endoscopy should show us, once and for all, what we are dealing with.

How many possible conclusions could be left, I wonder?

•••

Like many people, I have a natural inclination to find blame whenever the opportunity presents itself. If I can’t (or won’t) admit responsibility, then I can at least outsource it. The soup shouldn’t have been so hot; poorly-poured cement caused me to stumble on the sidewalk; the teacher withheld vital information—that’s why I failed the exam. Surely someone is to blame.

What about my empty bank account? Gimpy knee? Lack of a publishing contract? Most days I can spin it so that these gray areas tilt more definitively toward the black or the white. Not my fault.

Got cancer? It must be because of the polluted drinking water, unsavory lifestyle, or bad habits. But what if the disease should find random homes in healthy, rural-dwelling, non-smoking, teetotal vegetarians? Or children? Who do I blame then?

Some people insist everything happens for a reason. Others believe that we are all at the mercy of fate. All I know is that when you’ve been as close to cancer as I have, you stop looking for the smoking gun.

If my son, Myles, were to climb the two branches of his family tree, he’d discover signs of cancer before he reached the first bifurcation. From my side, he inherits the genes that betrayed my father and my aunt. On the other side, the woman that brought him into this world was taken by cancer before Myles was old enough to know who she was.

If my son gets cancer, I need look for blame no further than to the disease itself.

When Myles was still just a grainy, faceless pre-human on an ultrasound scan, he was exposed to a cocktail of drugs aimed at reducing the accelerating tumor in his mother’s left breast. With the information available to the team of specialists at the time, they determined that the mild course of chemotherapy would keep the cancer at bay until the baby was born, after which the treatment would be amplified. By all accounts, the placenta did its job well, filtering out all the invasive chemicals designed to target fast-growing cells. Our unborn baby was all fast-growing cells.

Myles was born healthy and strong and has remained so for the past twelve years. So healthy and strong, in fact, that I’ve often wondered if perhaps the anti-cancer chemicals zapped him with invulnerability to a Marvel Comics degree. As a baby, he’d crawl over gravel without scratching his knees; carrying him through the house, I’d clumsily knock his head against a doorframe without so much as waking him up.

But his superhuman tolerance of injury hasn’t pre-empted any of my fears for his long-term wellbeing. When, at thirteen months, he got his first cold, I thought it must be a symptom of something greater. Headaches, allergic reactions, and bruises must certainly be symptomatic of some malevolent intruder. When he complained of stomach aches, I envisioned the tumor burrowing into his abdominal organs. There could only have been one explanation.

Like most parents, I’d peek into Myles’ crib at night to make sure I heard the comforting whispers of his breath during his sound sleep. Now that he’s nearly a teenager, he still sleeps as soundly and I’m still responsible for waking him up in the morning. But after I unceremoniously swipe the covers off him and open his curtains, what if he doesn’t wake up? What if that malicious interloper has taken him from me during the night?

Farfetched, maybe. But to those of us who have witnessed it, cancer is always there, sitting just over everyone’s shoulder in various personae like those imaginary little angels and devils. But nobody is quite sure which one to listen to.

The word itself looms large in the lexicon of our unconscious as one that dare not be spoken. It is at once sacrosanct and taboo, as if saying the word might somehow curse the person who has it or pass it on to someone within earshot. When people do actually speak the word it is uttered quietly, almost politely so as not to aggravate the temperamental God of Terminal Illnesses. It is inherently self-editing, the harsh sound of the first ‘c’ muted by the disapproving sibilance of the second one. “Comeheregoaway,” it says in a radio-static whisper.

When Myles’ mother died, the cancer remained. It floated around me like steam from a boiling kettle. It nosed its way between the pages of my book and under my pillow. It hid between the floorboards or behind my cereal bowl. Sometimes it hung from the wall like a giant tapestry and sometimes it sat lazily in the teaspoon jar. It never taunted or pointed its ugly finger. It didn’t have to.

Through it all I manned the tollbooth at the edge of the cancer highway. Everything had to get through me first: the flowers in a beautiful garden were muted, grayer as seen through my eyes; the conversation that made me laugh was not quite as funny after I hung up the phone; good news was soured, bad news inconsequential. The world was cancer-coloured.

Time has healed the grief, but cancer lingers like dirt under my fingernails. It makes me wonder who the real cancer victim is.

•••

“Dad, I’m nervous,” Myles says after changing into the unflattering hospital gown.

“There’s nothing to be nervous about, Superman.” I try to take heed of my own advice. Until the final results of the endoscopy are in, nervousness is the least of my worries. Besides, I can’t let my son know that there is any risk or discomfort involved in Dr. Dinesh sliding a camera down his throat. Myles will be asleep the entire time.

“But they’ll have to give me a needle,” he says, sitting patiently with his bare toes curled against the freezing floor tiles. “That’s gonna hurt.” I long for the days when the thing I feared most was a prickly jab in my hand.

I wait in the under-stocked, over-priced hospital café, nursing a cup of tea and clinging to my son’s glasses while he’s put to sleep and his insides are probed by the latest inhuman instruments offered by medical technology. I wonder if Dr. Dinesh is looking at the rapidly-growing tumor in my son’s stomach, trying to determine the best course of action before breaking the news to the patient’s father. I plan ahead, ensuring I’m aware of all nearby doorknobs and railings lest I require something to break my fall as I faint after hearing the doctor’s report.

Within an hour I am at Myles’ bedside in the recovery room, holding his hand and counting the blips on the heart monitor. I recall the day of his birth, two weeks earlier than we’d expected, when I sat by the incubator for three hours with the same pings and peeps providing the soundtrack to the Cinemascopic vision that was my new son. Six months later, another hospital where his mother lay dying attached to another monitor. The only benefit of Myles being so young at the time was that I didn’t have to explain to him what flat-lining meant. The sensation never withers, especially when I’m forced to revisit the scenario.

The smoking gun.

•••

Let’s assume that there is no such thing as randomness; that we are forced to bear things like disease and anguish because our predestined fortunes have demanded it of us. If this were so, I might welcome my fate while condemning it at the same time. I might still find blame in circumstance or poor choices while gladly laying guilt with God or the Devil. Someone must be at fault.

But life doesn’t work that way. At least mine doesn’t. No god I’d be inclined to pray to would allow the kind of physical or emotional suffering I’ve seen some people endure. Why would any benevolent source allow itself to be culpable for something that unwittingly assaults people from the inside and lingers immortally in the minds of those who have witnessed it? There is nobody and nothing to which I can point the finger.

Randomness is all around me. From the car that turns the corner as I’m trying to cross the street to running into an old friend at a movie theatre to the pulled muscle in my back. From there, anything can happen; it’s the Sliding Doors syndrome. I choose to believe that we can only prepare for so much; that considering all of the careful choices we make, we are not in as much control of our lives as we might think. Sometimes life just happens to us.

I worry because I am a father; because I am human. I worry because I anticipate the hissing tongue of cancer to taunt me again without warning. I hope for the best and anticipate the worst. I keep my eye on the roulette wheel’s persistent silver ball lest it fall arbitrarily on my number.

When someone I love exercises their hyperbolic prerogative to illustrate a point, I am often short-fused.

“It’s so hot … I’m dying.”

“You’re not dying.”

“No, but … I mean …”

“You’re not dying.”

I don’t cut people much slack. It’s a figure of speech—I get that. Besides, we’re all going to die some day. But I’ve become a hypochondriac by proxy, convinced that all my loved ones will die around me while I remain here to live without them.

•••

Five interminable days after the endoscopy, the results, including tissue biopsies, return normal. No ulcers. No abnormalities. No cancer. The only imaginable explanation for the stomach aches, according to Dr. Dinesh, is a minor hiatal hernia, which many people tolerate without ever suffering from any pain, and slightly raised stomach acid. Eventually, he suggests, Myles will outgrow the excruciating interludes completely.

It’s the good news we’d hoped for. We’ve dodged the bullet. Just a stomach ache. My irrational fears have been soothed once more, and I will myself to be patient until the day we say goodbye to these episodes altogether. Hopefully this is the last time we see the inside of an Indian hospital. Or any hospital.

I don’t consider how bad the outcome could have been until the next morning when I pull the blankets off my son’s sleeping body and wait for him to stir. Short-lived relief bolsters me for another day.

•••

JON MAGIDSOHN, originally from Toronto, Canada, has been featured in The Guardian, The Bangalore Mirror, Brevity, Hippocampus, Full Grown People, Chicago Literati, and currently publishes three blogs. He’s also written about fatherhood for dadzclub.com, The Good Men Project and Today’s Parent magazine. He has an MA in Creative Nonfiction from City University, London. Jon’s memoir, Immortal Highway: Songs From the Healing Tour, is currently crowdfunding toward publishing in September, 2015.  Rewards include a copy of Full Grown People: Greatest Hits, Volume One. www.jonmagidsohn.com

Read more FGP essays by Jon Magidsohn.

Sips of Air

walk
By Gina Easley www.GinaEasley.com

By Antonia Malchik

Some premature babies, the Neonatal Intensive Care nurses tell me, can’t afford the calories it takes to swallow. The first time they take my skinny, three-point-three-pound son off his IV drip to give him real food, they ask me not to watch. They have to run a tube through his mouth down to his stomach—babies this young also have no gag reflex—so that the calories go directly where they are needed, rather than being wasted in tongue and throat action, a method called gavage feeding, the same way foie gras geese are fattened. The instinct to rescue him from this specific invasion comes as a relief: my days are otherwise filled with fear, helpless and enormous and without direction.

•••

The entrance to our nearest hospital butts against a curved driveway where people pick up and drop off patients or take advantage of the free valet parking. Behind it, before shifting into pure concrete and asphalt, is a landscaped grassy area with benches clustered around a fountain and picnic tables set at angles near the walkway to the parking lot.

It looks innocent enough, inviting, but it’s not. The first time I stepped on that walkway, I was looking down and jumped to the side as if it burned through the soles of my shoes. It was paved with bricks, most of them carved with the dedications of donors, bricks given in honor of someone whose name was usually followed by a date of birth and a date of death. What made them unusual was how close the two dates were—sometimes days or weeks, sometimes the same day. I wondered how long those babies had lived. Hours? A whole day? Minutes? Where were their parents now? Did they wake up on that date every year to face the grayness of loss?

My husband Ian and I called it the Dead Baby Walk and kept to the grass after that. We spent a lot of time at the hospital, sitting in Neonatal Intensive Care next to an incubator holding our premature son. He was so scrawny that he weighed less than our smallest cat; he’d been born seven weeks too early, and his lungs weren’t functioning properly. There was no way that I was going to start the day’s visit to him by being reminded of the fragility captured at the beginning of life and how frequently it can end in the opposite of hope.

•••

“I don’t think I can go in,” I told Ian. We could see the birthing center, on the fifth floor of the hospital, from the parking lot. It was seven days after John’s unexpected, extremely early arrival, and I was leaving emotional shreds of myself all over the county as we made our daily drive up and down the New York State Thruway from our home to the NICU. There, locked away from rooms where real people, with normal babies, bore and laughed and kissed and nursed, my son took sips of air from oxygen tubes while another tube tried to clear an air pocket from around his lungs. He had air in all the wrong places and a hole in his heart and had never yet eaten anything not given by IV. The NICU—short for Neonatal Intensive Care Unit, the place for undercooked or sick babies (ours was both)—dragged on me like a small planet with its own gravitational pull, a force nonexistent for people whose babies had been born full-term and healthy.

Every day after being buzzed in the locked door and scrubbing my arms and forearms at the NICU sink (premature babies are also extremely susceptible to infection), I paused just outside the bright room, trying to arm myself against tears that were of no use to anyone. The incubators were shrouded with small homemade quilts made by a charity organization. John slept and blinked and cried under a pattern of cats sitting against a green background while Ian and I read to him from a book of traditional English fairy tales that I’d picked up in London. We sang the “Mockingbird” song over and over, and described the room that was waiting for him: the special mobile his grandparents had sent from England, the fairy tale–themed mural a friend had painted on his wall. I choked when telling him about the blue rug and striped curtains we’d bought. The care that we had put into those everyday details sometimes overwhelmed me.

Today I couldn’t get to the blue rug and striped curtains. Today I couldn’t even get as far as the NICU door. I couldn’t even get out of the car. Today the neonatologist had called early in the morning to warn us that John needed another chest tube to clear a second pneumothorax—an air bubble that prevented his lungs from expanding—and I’d curled up between my bed and the loathsome breast pump and sobbed as if tears could dissolve the pain and me at the same time.

In the parking lot, Ian brushed tears back into my hair. Neither of us had any platitudes. “Can you?” Another nod. A deep breath. A final wiping of nose and face. I swung my legs carefully out of the car and hauled myself up using the handle above the door, heading for the longer path around the curved driveway that avoided the Dead Baby Walk. My skirt brushed over the massive numbness in my abdomen, hiding a healing scar I’d never intended to have.

Two weeks before, I’d been grimacing every time I folded myself into a car and thinking that I couldn’t possibly stand the discomfort of pregnancy for the two months I had left. Three weeks before, we’d been hiking on a remote Scottish island, where the hospital was over an hour’s flight away from the island’s cockleshell beach—an hour if the weather was clear, a day’s wait or more when it was overcast. If my body had turned against me earlier, neither John nor I would have made it. The nearness of the timing still makes my breath short and my hands cold.

•••

I had HELLP Syndrome. A vicious, rare illness that’s caused by pregnancy, with no cure except delivery. It hit me fast, progressing from slightly elevated blood pressure to nearly unbearable abdominal pain within twenty-four hours. By the time my obstetrician performed an emergency C-section, my liver was failing. When my son and I came out of the operating room, Ian was on the phone with my older sister. He froze, not knowing whom to follow as they whisked us each into our own intensive care units.

That first day, I sat in shock in the ICU, smiling automatically at the nurses because being nice is such a deeply ingrained habit that it’s almost pathological. I’d jerk awake when the oxygen monitor screamed to tell me I’d stopped breathing again. My fingers shook as they stroked the streaky Polaroid photo taped to the bed rail. John Henry, a thoughtful nurse in the NICU had written, 4 lb 3 oz, 17 in. I didn’t see my son until thirty hours later, when I was transferred from the ICU to the birthing center’s Mother & Baby section, surrounded by women with full-term newborns and visitors armed with balloons and flowers. Ian and I, three thousand miles from our families, navigated phone calls and inedible hospital food alone, no baby by the bedside.

That first time I met John, at some dark hour of the night, a NICU nurse lifted him, tubes and all, out of his incubator and into my arms. Our IVs tangled; Ian held an oxygen sniffer to John’s nose; I murmured happy nonsense, a normal new mother for a few minutes, ignorant of the month to come.

•••

A week later I sat once again on the high stool next to John’s incubator. I hadn’t been allowed to hold him since that first day, due to the chest tubes, oxygen sniffer, and IV lines, so Ian and I took turns resting our index fingers in his little hand, living for the moments when he squeezed. We couldn’t do more than that. Premature babies are also extremely sensitive to touch. Stroking a preemie’s head or skin can drive him crazy.

The nurses—our friends by now—looked at us anxiously when we walked in that day, the day I gave up on hope and struggled to come in the door. They’d seen parents go through this before, and worse. The neonatologist wrapped us in her professional sympathy as she showed us the second pneumothorax on an X-ray and said John might have to be transferred to a tertiary care unit closer to New York City. I envisioned weeks of three-hour commutes to spend scarce minutes with him, and it seemed unbearable.

After seven days, two pneumothorax, a hole in the heart, and an extra bit of heart valve where it wasn’t needed, there was only one thing that hadn’t been tried: John had not yet had food. He’d lost slightly under a pound—a quarter of his body weight—while my pumped milk had been piling up in the freezer, the only offerings I had to give the gods.

The next day they decided to start feeding him. One milliliter of milk went down the tube to his stomach. The next time it was three, no calories lost to pesky swallowing. His breathing became less erratic, and they turned down the whispering oxygen. Within three days, John had recovered so well that it startled even the neonatologist. He was a full month old before his lungs were strong enough and his heart repaired enough for him to be discharged, but two weeks into his life he was tube- and IV-free for the first time and learning to eat on his own.

•••

Those of us who have faced the potential loss of a child will never bear the pain of those for whom the potential became a fact. We may have stepped on the Dead Baby Walk, but we haven’t bought a commemorative brick. All I can say is that the fear has come close enough to unshroud itself, to touch the heart. Every parent fears losing his or her children. The physical hazards and accidents—cars, drug addiction, sudden peanut allergies, a million unthinkable possibilities—haunt us. It is something else, though, to have that fear cupped in your hand, to acknowledge it by name. To be warned: “Prepare yourself.” Because once prepared, once you know, the Dead Baby Walk’s existence stalks your footsteps. Like all traumas, it becomes embedded in our physical bodies as well as our psyches.

Before his third birthday, John was hospitalized twice for asthma. The second time was the same day we brought home his new baby sister. I held her while Ian drove away with John strapped in the back, his chest caving to expose ribs and diaphragm while he fought to inhale oxygen. His lungs had been too weakened by their early struggles; a simple summer cold caught his alveoli in a tight grip and laid him flat.

He’s seven years old now, and, if all goes well, on his way to being diagnosed asthma-free, despite the incessant coughing that exhausts him every time he catches a cold. I yell at him on a regular basis—brush your teeth! turn off the TV! please stop whining!—something I couldn’t have envisioned doing either during the NICU-month-of-hell or his later asthmatic episodes. He plays Minecraft, rides his bike, does his math lessons, throws a fit when I ask him to pick up his Legos. He’s a normal kid.

But I don’t feel normal anymore. Or maybe it’s that I have been normalized. Maybe avoiding loss, pretending death doesn’t exist, is the abnormal state. I’d hate to believe humanity’s fate is to walk shadowed with grief, sorrow slipping into us painlessly like milk down a gavage tube to a premature baby’s stomach. But on our hospital visits for John’s chest X-rays and to his pulmonologist, and when I returned there for monthly visits to the high-risk perinatologist during my second pregnancy (being at a 25% risk of developing HELLP or various other complications again), the Dead Baby Walk still made me jump like an animal that’s seen violence. Its existence reeks of trauma and fear. It’s a reminder of how linked we are: We clutch at the good moments, the small joys, while the greater sorrows, the losses that eat us alive, lie waiting beneath our feet.

•••

ANTONIA MALCHIK’s essays have appeared in a variety of publications, and are forthcoming from The Washington Post, Orion, STIR Journal, and The Atlantic. You can read more of her work at antoniamalchik.com, and about her experience with HELLP Syndrome on BuzzFeed Ideas. She is a regular contributor to Full Grown People.

Hush, My Darling

petals
By Gina Easley www.ginakelly.com

By Melissa Bauer

I.

“I think it’s bad,” my mother tells me, as she lies flat on her back. Her large abdomen hugs the crisp white sheet draping over her. She’s recovering from a cardiac catheterization, a procedure to assess if there are any blockages in her heart.

I put down my book. “Why do you say that?” Even though I know she is probably right. With severely high cholesterol, high blood pressure, and morbid obesity, my mother is living on borrowed time.

“I could just tell by the look in the doctor’s eye,” she says, and then adds, “plus he used a lot of dye.”

“Hmmm,” I muse, “well, hopefully not.”

“Yeah, you’re probably right,” my mother offers.

D for denial should be our family crest.

•••

But my mother’s fears are confirmed; three out of four of her cardiac arteries are between 85% and 99% blocked. They need to transfer her to a larger hospital to perform a procedure where they insert tiny tubes to keep her arteries open.

They need to transfer her now.

An ambulance is called.

The doctor warns us that the procedure can be harmful to the kidneys because of the dye, but she is not a candidate for bypass surgery because of her weight.

The doctor tells us she needs this procedure to save her life.

We don’t ask any questions.

We don’t seek a second opinion.

We just do as we are told.

•••

I ride in the front seat of the ambulance with the EMT driver. The siren sounds and we speed down the interstate, passing curious onlookers who appear safe and secure in their compact cars. The driver and I share the same birthday. She tells me she plans to go to nursing school, too. I nod in agreement and recall my first year in nursing school, when my parents were hospitalized at the same time, my father for emphysema and my mother for a stroke in her right brain stem. I cared for them both single-handedly; my brother lived in New York City. I cooked their meals, arranged physical therapy, organized their medications, and took a leave of absence from work. I was twenty-one-years old.

•••

Now, seven years later, my father has been dead for eight months and my mother’s life hangs in peril. I will myself not to cry, to be strong, to be a nurse, but hot tears trickle down my cheeks instead. A whir of beeps ring from the back of the ambulance breaking my thoughts and terrified, I turn my head, bracing for the worst.

“Is she okay?” My voice is shaky as I yell to the EMT that is sitting in the back with her. “What’s all that noise?”

My mother yells back through the glass, “I’m fine, Melissa!” And the EMT confirms that the beeping is normal.

I exhale.

I listen to my mother tell the EMT about how much I worry and about my father’s recent death. My mother has never met a stranger, and yet I have felt like a stranger to her most of my life.

•••

We arrive at the hospital and I’m standing by the rear of the ambulance, watching as they unload her stretcher. The two EMT workers leave us momentarily to give their report to the receiving nurse.

We are alone.

My mother has to lie perfectly still because of the catheter in her groin, so she motions for me to come closer; she wants to tell me something.

I walk over and hold her hand.

“Did I really need an ambulance?” she asks me fearfully.

“I don’t think so,” I lie. “It’s probably just routine.”

A few minutes later my husband arrives and my mother’s emerald eyes light up.

 

II.

For as long as I can remember, there was a war raging inside our home, the three of us against my mother. My father, brother, and I formed a united front; we shared a sensitivity that was lost upon her. Every day, during my childhood, we carried out a similar routine seeking refuge from the onslaught of her abuse.

On most mornings, my father would gently wake me up for school, rubbing my back and whispering in my ear, “It’s time to wake up, honey,” and then he would walk into the kitchen to make our breakfast. I would sit sleepy-eyed at the dining room table, eating my cereal as my father smoked his cigarette and wrote in his journal, the news humming softly from our TV in the background.

Then it would be time to get in the car with my mother, who would drive my brother and me to school. “Melissa, get back in the god damn car right now!” she would yell as I sat outside to wait. I hated being alone with her while she smoked one cigarette after another in haste. The smoke was suffocating. Instead, I would move to the rear of the van and inhale the exhaust. I liked the way it smelled and I’d let the toxic fumes fill my lungs breath by breath.

My mother typically drove us half way to school. We would walk the remainder of the way. I would sit in the very back and stare out the window, counting the minutes until we were free. She would drone on about how we always made her late for work in between puffs from her cigarette. One day I finally had enough. I pleaded for her to crack the window open, and I lectured her on the dangers of smoking. “Mom, Miss Smith said that second hand smoke is worse than first hand!”

But she didn’t. “You snotty, little bitch,” she said as she blew a big billow of smoke into the air. She abruptly stopped the car and forced us out, making us walk farther than usual.

“You fucking bitch!” my brother yelled at her as he slammed the door. I ran after him, dodging traffic, fearful to be left behind.

•••

My mother is in the hospital again. My father has been dead for twelve months now; this is her sixth hospitalization since then. I’m sitting in a stiff vinyl chair next to her, watching her chest rise and fall, in a deep sleep. An IV pole stands between us; the clear tubing wraps around her arm and into her hand, delivering medicine through her body in a rhythmic drip.

Drip.

Drip.

Drip.

My trance is interrupted by the sound of the blood pressure cuff deflating. My eyes drift up toward the monitor; 220/110 flashes across the screen in red, and an alarm sounds waking my mother. Startled, she looks over at the monitor, then at me. She smiles. Her plump lips flatten, emphasizing the gap between her two front teeth.

“This friggin’ thing!” She yanks on the cuff, which is tangled in with her gown.

“No wonder my blood pressure is so high!” She scowls as she tries to untangle it, but then stops herself and looks over at me, the elephant in the room. Having watched her abuse and neglect her body for years, we both know a tangled blood pressure cuff is not to blame for her failing heart, but I don’t say anything. I’ve grown tired of challenging my mother, of arguing with her, not out of obligation or out of spite, but out of love. Because deep down, buried beneath messy piles of fear and anger, I want to believe my mother loves me. That she won’t abandon me. That she will guide me when I can’t find my way. Because right now, I am needy and frail, and I feel small and helpless. I am lost. I part my lips to tell her this but then close them. Scared to reveal to her how vulnerable I feel, how raw she makes me, I swallow hard instead, clench my teeth and gaze out the window as the nurse enters the room.

“You look familiar,” the nurse says to me, redirecting my attention as she administers more blood pressure medication through my mother’s IV.

“I’ve been here a few times,” I say, my words sounding colder than I intended.

“Honey, can you get my red lipstick?” My mother changes the subject, and she smiles sheepishly at me as if to say sorry we’re here again, but I know that she is really only sorry that she was caught. Caught in denial and her time is nearly up.

Alarms ring in my heart as loudly as the blood pressure monitor.

I walk over to the closet and fish out the lipstick, hand it to her, and tersely smile back.

This isn’t my first rodeo.

•••

I am ten years old and staring at my mother’s fingers. Her long nail beds, yellowed from years of smoking, are shifting from yellow to white as she grips the steering wheel of our brown, late 1980s model Chevrolet station wagon, as she fights her way through Los Angeles traffic. George, as she named the car, is safely carrying us on this mother-daughter date to our favorite store, Pic ‘N’ Save, so that we can buy my first bikini.

She swings the car into park after cursing, in sign language, the other driver who narrowly stole our space.

“We’re here!” She gives me her sideways grin. Her lips are painted Cover Girl red, her staple.

I am so excited.

Just as we are about to get out of the car, our favorite song, “The Lion Sleeps Tonight,” plays on the radio and we linger in our seats for a moment longer, bobbing our heads to the beat and singing:

In the jungle, the mighty jungle, the lion sleeps tonight.

We croon in unison, building up to the chorus, and our favorite part of the song:

Wimoweh, wimoweh, wimoweh, wimoweh

We are shouting it now, singing with each other in sync, our bodies moving passionately to the music:

Hush, my darling, don’t fear, my darling, the lion sleeps tonight.

I look over at my mother, my lion, and her eyes are closed. Her eyelids are rapidly fluttering; she is fully present. Her hand is resting on my knee; her yellow fingernails are tapping against my skin with the rhythm of the music. I can feel her love; it burns as hot and passionately as her rage.

•••

I am sitting in the airport and, out of the corner of my eye, I notice her. A heavyset woman wearing a white t-shirt and purple slacks walking down the airport terminal with a younger woman, presumably her daughter. The backs of her heavy arms resemble the same shape as my mother’s were. Same shade of alabaster, too. Her gait is also similar, a sort of waddle and shuffle, as if her legs are going to give way any minute from the weight of her giant belly. I watch this stranger for longer than is polite, swallow hard, willing myself to look away.

She does not notice me.

Still I am nearly a puddle of tears, breathless from this small glimpse, this little reminder, of my mother.

And I know.

Regardless of how many books I read, of how many stories I share, of how many years pass; I will always be a motherless daughter.

I will always yearn for what I can never have back. And perhaps for what I never had to begin with: a mother’s unconditional love.

•••

Growing up, I always knew I was adopted. The picture of my birth father was missing, lost in the shuffle between foster homes. But I had pictures of my birth mother: three, to be exact. They were kept in an album labeled, “birth mother and foster home,” tucked away in my nightstand with my journal. I stare at these pictures now trying to remember her, but I don’t. I’ve studied her face, memorizing the gap between her two front teeth and the way her nose has a slight bump at the bridge, but I’m empty. Not a single memory of this woman, whose life is woven and welded into mine through our shared DNA, dwells within my heart.

Her brown, curly hair echoes my own. Our eyes are the same shade of gray blue. She was twenty-one years old when these photos were taken and, in these pictures, she’s sitting behind me, smiling brightly, while I pose for the camera in delight on my second birthday. But if you look closely you can see the clutter hiding behind her. You can see the tension in her smile. And you’ll notice her awkward grip on my waist; a mother who does not know her daughter, strangers to one another, posing for the camera in mockery at the nonexistent relationship between them. At the time of my adoption, two years after this photo was taken, my foster mother made this album for me, and included captions beneath every picture, “Anne and Melissa, second birthday, 1984.” It’s the closest thing I’ve ever had to a baby book.

 

III.

My mother is recovering from her cardiac stents. She is just getting settled into her room, when suddenly she starts to vomit profusely. The nurse, wide-eyed and frantic, immediately turns to my husband and me and orders us to leave the room. But before we can exit, a swarm of doctors and nurses enter, pushing us out of the way. I’m watching from the corner of the room as the doctor assesses my mother’s groin, the site where her catheter was placed, and yells for the nurse to call the vascular surgeon. I hear the words pseudo aneurysm. My heart races as I steal one quick glance at my mother before we are ushered out of the room. Her green eyes are wide with terror.

My husband and I sit in the waiting room at the end of the hall. Suspended in time, we wait. I get up to use the bathroom then return to our post. Waiting. We are silent as we wait. Minutes stretch into hours until finally the nurse comes out and gives us the okay to go back into my mother’s room. The vomiting caused her to strain, pulling her lower abdomen, tearing the delicate surgery site, which led to internal bleeding. As we enter her room, I notice there are needle caps on the floor, empty vials of medication used to stop the bleeding, bloody gauze, and bandage wrappers littered throughout her bed. It looks like we are at the scene of a crime. My mother jokes about her luck. “If something is going to happen, it will happen to me!” I don’t tell her that the doctor said that it was the weight of her giant belly that caused the tear. I want to protect her. I am also afraid of her reaction. I realize I love and fear my mother in equal measure.

I watch as my husband spoon-feeds my mother her dinner. She was instructed not to move for several more hours, but she has not eaten since dinner the night before. They both laugh and my mother puckers her lips like a baby, yelling, “More, more, more!

My husband taunts her with the spoon. “Here comes the airplane,” he jokes, and my mother opens her mouth wide. I glower at their lighthearted interaction with each other, my heart heavy with the pain of responsibility.

The next morning my husband returns to work and my mother and I are alone. A hospital volunteer stops by her room, an elderly woman selling magazines and candy.

“Would you like anything, Mrs. Devlin?” the kind old lady asks my mother.

“Sure, I’ll take the Snicker’s bar!” my mother excitedly says. “How much?” She digs through her wallet.

“No, Mom, you will not get a Snicker’s bar!” I scold and then inform the old woman she just had a procedure to clear the blockages in her heart.

“Well, you better listen to your daughter,” the woman offers as she leaves the room.

My mother pouts.

The nurse then enters the room to check her vital signs and my mother retells the story.

“Aww, you wouldn’t let your mom get a candy bar?” she chimes in, taking her side.

I stare at them both, but say nothing, befuddled and incensed by my alienation.

 

IV.

My mother died alone nine months after her cardiac catheterization. I received the phone call while I was at work. Her heart stopped beating. She was in her living room, sitting in her lazy-boy recliner, the TV blaring, when she took her last breath. I’ll never know her last thoughts, whether or not she gasped for air, or if she felt alone.

Hours after her death, my husband and I arrived at her house. We were greeted by a swarm of people, her friends from church, nosy neighbors, the coroner, the police, and animal control. Children played in the distance; their faraway joy broke my heart. I could see the very top of my mother’s head, her white downy hair peeking over the recliner from her living room window. I stood outside, afraid to go in, as I called my brother. I stared at the ground as we sobbed in unison thousands of miles away from each other, orphaned for the second time in our lives. Having buried my father seventeen months earlier, the formalities of her death felt familiar and foreign all the same.

“Mom, I’m scared,” I cried into the phone, raw and viscous with grief two weeks before she died.

“What are you afraid of?” Her voice sounded tiny and far away.

“Of losing you,” I choked out between breaths.

“Don’t worry, baby,” she tried to reassure me, but I knew the end was near. It was never far behind us.

Hush, my darling,

Don’t fear, my darling,

The lion sleeps tonight.

•••

MELISSA BAUER lives in Atlanta, Georgia with her husband. They are pregnant with their first child and due in November 2014. She works as a registered nurse and has been writing about her journey through grief, loss, and healing since the death of her parents in 2011.

Taking Notes

birthday candles
By Steve Jurvetson/ Flickr

By Sarah Werthan Buttenwieser

The moment I poured the runnier-than-my-usual batter into the pan, I had a feeling. I had an hour or so on Saturday morning to make this cake—before I took my nearly six year-old-daughter to her gymnastics class. Later that day came the party. For the eleven children in attendance, I still needed pizza, gluten-free cupcakes for the girl allergic to gluten who’d bring her own pizza, and some ice cream maybe. It’s safe to say that by this—our fourth turning-six-years-old party—we’ve become relaxed. To call dancing a theme would be stretching it. To say we’d prepared would be stretching it.

That the cake did not come out of the pan in one piece wasn’t a surprise. Even the help of a carefully wielded spatula, the larger part of the cake headed to the wire rack with a halfhearted momentum, accompanied by the sad inertia from the rest still glommed to the pan.

A friend called right as I began to contemplate cake triage.

Her kids were fine. Her brother wasn’t. “He’d gotten clean,” she launched in. “And then he stole my stepmom’s jewelry.”

This guy had been in and out of trouble, more in than out, for years. His parents disagreed at this point about what to do. He stayed with them much of the time, because he was out of work. His mom—my friend’s stepmom—was at a rope’s end, and the jewelry theft—family treasures much more than dollar values—made her feel violated, stripped of all dignity. “She just wants him out. It must have felt so hostile,” she said of her stepmother’s response. “I can understand how she feels, although I don’t relate to jewelry like that.”

“Your dad?” I asked.

“He can’t abide the possibility that my brother would hurt someone else or himself,” she says. “He wants to have my brother on his watch, because he says he couldn’t live with himself if something happened and they were estranged.” The something my friend’s father imagined: homicide or suicide.

“I guess you never want to give up on your child, and yet you know that unless he gets help and it works, this can’t end well,” I said.

If you try to spackle chocolate cake with yellow frosting, you get little crumbled bits of chocolate cake interspersed in your thick yellow paste no matter how hard you try not to, like tiny flecks of dirt. “This cake could be on Cakewrecks,” I said. I had just enough frosting and enough salvageable cake to restore about three-quarters of the disastrous top layer, the one I’d meant to be the bottom layer.

“It’s made with love,” she reasoned. “It’s cake, and you put it in a bowl with ice cream and no one notices.”

I had already decided this particular cake required ice cream. In the morning, I’d told myself I had just enough time to make a cake. I’d done so little for this party and asked myself why should the smallest one lose out on a homemade cake? The bakeries that offered pretty decorations had shut down and no way would I buy a supermarket cake, for no reason other than I didn’t want to. My cakes are generally good. They are generally pretty enough. Not so this time. Then again, it wasn’t my son stealing my jewelry to buy heroin so there was that.

“Small children, small problems, big children, big problems,” I quoted one of those in-the-ether parenting aphorisms.

“Ooh boy, I know. I can’t imagine what I’d do,” she said. Her oldest is four. She cannot imagine. That’s the truth. My oldest is eighteen and I can’t imagine but more so. Enough distress of the way-beyond-Band-Aids kind has occurred now to make me appreciate how small the small children problems really are. I let myself marvel at my cake in this light and was surprised by how unworried I felt by its imperfection. It’s a cake. It’s not a drug addicted, jewelry thieving son. Let my problems start and end at cake—memorably cakewrecked cake. If only the wish could make it so.

•••

A few weeks ago for some work-related research, I had to read through a stack of alumnae quarterlies’ class notes sections. According to convention, class notes start with the earliest classes and advance in time. The most recent grads go last. This means the first pages focus solely upon who died. Reports then drift back through the life cycle: ailments, assisted living and family travel, retirement, adventurous travel, gatherings of friends and grandchildren, professional accomplishments and empty nests, full nests, babies, weddings, engagements, first jobs. You can see years like ribbons—swaths of experiences, one after another across the thick, matte pages. Stories repeated.

One of the milestones that many women described were their seventy-fifth birthday celebrations. Quite a few took trips: with children or spouses or friends, to far-off places or somewhere cushy for family gatherings. That was the week my mother turned seventy-five. When I called to wish her a happy birthday, she remembered how hard her sixtieth birthday had been. Her sister had cancer and was only a few weeks from death. She was just a month shy of sixty-five.

“We did this big Chinese dinner with our closest friends when I turned sixty,” my mom recalled. “It was as if, in the face of everything that hurt we had to affirm the friendships. I didn’t feel like celebrating at all, not at all. I was so sad. In retrospect, until then, other than my divorce, I really hadn’t experienced loss.”

Following her sister’s death, my mother got a crash course in loss, including but not limited to her brother-in-law’s death and her mother’s. We did, too; ours included my father-in-law’s death and two of my peers, both of whom had small children.

We’d been so stunned by all the losses—numbed, crushed, battered, humbled, calloused. By the time we weren’t in the midst of some crisis, I felt different. There was no more denying the inevitability that life ends. Although I felt heartbroken more than once, I also felt more grateful, even for the hard parts. I understood that it was a privilege to get to be sad.

It turned out that my mother spent the weekend before her seventy-fifth birthday in search of a nursing home for her brother-in-law. He’s younger than she is, but his MS has progressed that far. “Nursing homes are depressing places,” she told me. Both of her parents managed to avoid them. I asked how about her birthday celebration. She and my stepfather had gone out to lunch. “We’re both so defeated,” she said. “I’m glad I didn’t have to muster energy to do anything more than that. I couldn’t have pretended to have fun today.”

Unlike the women who wrote of their milestone travel adventures or spa vacations with their female family members, my mother has no such plans. “The girlfriends’ lunch is in a couple of weeks,” she reported when I suggested the celebration didn’t have to happen that very day. She knows my sister in California will make cake with her three girls and that when she and I go with my kids to Florida next month, we’ll eat ice cream from the homemade ice cream place we ride a trolley to reach. None of that—ice cream and cake with her grandchildren—would be notable enough that she’d think to submit to the alumnae quarterly for her college.

•••

So much doesn’t go into the class notes. What of those moments? The burning baby tummies and bottoms of feet, their slack eyes and wan skin that made the red cheeks look clownish. The first time I experienced it, there were two sick, the baby and the preschooler. The labored breaths and the gloppy, encrusted noses, the coughs like wounded seals, and all that heat—and it was on me because their dad had it too. So did our housemate. By the time I’d reached the doctor’s office, I’d wrung about a million tepid washcloths between them.

While I clutched seven-month-old-baby, the doctor patted my arm. We were standing in the exam room. “I’d like to get a chest x-ray,” she said. “If the baby has pneumonia, we want to treat it, but it’s hard to tell when they’re so little.” I couldn’t say anything just then. I’m sure I looked crazed, crestfallen, and scared. “It’s okay—it’s a precaution to check,” she reassured me and added, “You’ll never forget this.”

This: the illness that filled the house with all that labored breathing and filled me with exhaustion and panic in equal measure. This: the patience needed to care for all those patients. And beyond our household, more exhaustion and patience and panic while my mother’s sister, my beloved aunt was dying and my father-in-law had just received a diagnosis of myeloma. There was no place calm. No one could really help us and there was no way to help anyone else beyond the sick people I could touch. Islands of illness—and only ours promised a happy ending.

It was snowing. Big flakes flew at the windshield and tossed slickness on the roads. The flakes fell by the handful. I leaned in toward the windshield to squint between the wiper swipes, and I gripped the steering wheel as if I held tight enough, it would take over and deliver me safely to my destination. I am never a happy driver in the snow, and that day I was even less happy with the sick baby in the backseat and the need to pass home for the hospital. Cars inched along, the roads narrowed by snow. The tracks where tires tread muddied by sand and salt remained slick despite the intervention.

At the hospital, the x-ray technicians fawned over my chubby, ill baby. I stripped him down to a diaper as requested, his hot, velveteen skin under my rough, desperate hands. The way you take a chest x-ray for a baby unable to stand is this: You place him in a cylindrical plastic contraption, which holds him upright, his arms aloft so that the machine can capture an image of what’s beneath the skin. His chubby fingers waved like tassels to some comical, fleecy hat atop his head. “He’ll cry,” the technician promised. “That’s good. We want him to cry because crying expands the lungs so we get a good image.”

He cried as they placed him in the cone-shaped seat and pulled his hands up onto the top of his head. Then, all set in the odd little seat, he smiled at the technician.

“We’ve never had a baby smile here,” she said, as she stepped away toward the switch. “Maybe, he’ll get bothered, now that he’s alone.”

Nope. He just chilled in the seat with those tassel fingers and smiled. The technicians paused. “He’s a happy baby,” one concluded. “Let’s try to take the image,” she suggested and they did.

“I hope this works,” the technician said, as I slipped my sick baby back into his clothes. I added the possibility that the x-ray would be inconclusive to my long list of worries. I took him home.

He did not have pneumonia. Eventually, the household recovered. After that storm, which went on for a couple of days, like a prairie blizzard, there was a thaw. I walked to town.

The sun shone and the snow melted with such palpability it was as if we all were thawed ourselves. The high thirties felt like summer. Snow dropped in clumps from trees and in sheets from roofs, and there were puddles the size of swimming pools on the sidewalks and streets. I reached town and ate a frozen yogurt cone outside. I turned my head to drink in the sun. I gulped the fresh, warm air, grateful to be removed from the house and the clinging arms, the hot skin, the raw winter and for a few minutes to feel myself alone. It was my first outing away from everyone since illness overtook.

Anxiety and sadness flashed there, too, blinding as sunshine. My aunt, my strong, tall, smart, capable aunt, she was practically gone and my mother was inconsolably sad. Unlike my parents’ divorce when I was a child, there wouldn’t be a next chapter to imagine that could exactly ameliorate her loss. Sure, we all understood life would go on and we’d experience happiness again. You don’t get a second sister if you have one, though. Besides, right then, the loss loomed so close, like all those big snowflakes that had walled us in. I took more breaths. I clomped back in my soggy boots, my pants legs soaked. I cried on the way home. The sunshine and freedom gave me the chance to cry. I couldn’t let in the idea that all this might happen again, with my father-in-law, but then it did—about eighteen months later.

•••

The thing that salvaged the cake wasn’t the ice cream, although I got both chocolate and vanilla. (We had more takers for chocolate; the vanilla was much better.) I bought rainbow sprinkles. I stuck two Playmobil figures, a knight and a princess on the low platform left by the lack of a complete top layer. I stuck two red plastic toothpicks with big lips bright as Taylor Swift’s red pucker. I placed all seven candles, six plus the one for a new year around the top layer’s ledge. The cake blazed; the loving lips and the smiling figures led the way. She blew. Her friends clapped. The candlelight danced against the glint in her happy, nearly six-year-old eyes. The imperfection didn’t change her joy. Imperfection really never does. The trick, I guess, if it’s a trick, is to see where you slip from problems you can spackle together with butter and confectioners’ sugar to the ones that require something else—and the ones that simply require your acceptance of them as part of a natural order. I saw the cake and heard the six year-olds’ squeals and remembered to look at it all.

•••

SARAH WERTHAN BUTTENWIESER has had essays in the New York Times, Salon, the New Haven Review, and Brain, Child magazine amongst others. Her articles have recently appeared in American Craft, Ceramics Monthly, and Berkshires Magazine. She’s a regular contributor to Full Grown People. She lives in Northampton, Massachusetts, and is on twitter: @standshadows.

Into the Woods

girl in tree

By Gina Kelly www.ginakelly.com

By Rebecca Stetson Werner

Dear Lucy,

I wrote this story for you, but when I began it I had not realized that girls grow quicker than books. As a result you are already too old for fairy tales, and by the time it is printed and bound you will be older still. But some day you will be old enough to start reading fairy tales again. You can then take it down from some upper shelf, dust it, and tell me what you think of it. I shall probably be too deaf to hear, and too old to understand a word you say, but I shall still be

your affectionate Godfather, C. S. Lewis.

Introduction: The Lion, the Witch and the Wardrobe

I am packing for several days away from my family, away from my husband, Jonathan, and our three children. I am going to spend much of that time in a hospital, I know. I am preparing for this by carefully considering what I will need and what I need to leave behind. I stand before my closet, my Wardrobe, and consider my options. I pull out two skirts. They strike me as nicer than my typical jeans and perhaps they will somehow help me feel more comfortable, more grownup, more respectable in the hospital world I am about to enter. Maybe I’m reaching for a fur coat as I pass through the Wardrobe and into Narnia.

I move from the closet to my nightstand and gather my laptop and cell phone and coil up their power cords. I take several folders and books of work I am in the midst of. And then I grab a book of fiction, thinking I might have a lot of time on my hands, and I toss it into my shoulder bag. The one I grab is from the pile of middle-grade-reader books I have recently collected from the library for Julia, our daughter. Books that expose young readers to the world outside their family, with themes of the difficult but doable, dark but with a promise of a happy ending.

Julia and I are working our way through this stack, both of us happily devouring the stories. So perfect for her because she is nine. So perfect for me because apparently this is what I need right now. As I enter this new stage of my adult life and grow up a bit, and I reach for the fairy tales of my childhood to help me walk through this new terrain and find a path through the dark forest. Just as C.S. Lewis promised. They are my sustenance right now, and, like a gingerbread house, they have me enchanted and captivated.

So. Two skirts, a cell phone, and a child’s book to keep me company during a very adult journey. I register the irony, and also how it seems just right.

Somewhere within me, down deep, I know. I know it is very important what you select for a journey. In your bag will be the only things you will have when you face problems, uncertainties, riddles, witches, and wolves. What seems random, what seems thrown in for another purpose, or by chance? Could be what you trade for your very life.

At least that’s how it works in fairy tales.

•••

As with all great art, the fairy tale’s deepest meaning will be different for each person, and different for the same person at various moments in his life. The child will extract different meaning from the same fairy tale, depending on his interests and needs of the moment. When given the chance, he will return to the same tale when he is ready to enlarge on old meanings or replace them with new ones.

Bruno Bettelheim, The Uses of Enchantment

My father has been gone from the hospital’s surgical waiting room for quite a while. Really, for a long while. Though I am not sure this is actually true. It feels as though I have been here alone—alone but surrounded by strangers who are separated from me by their own internal struggles and worries about their own loved ones—for hours.

My mother is in surgery, a minor surgery, a surgery resulting from her age, a “tune up” as we explained it to our three children when I told them that I was going to be away for two nights in order to be with Grammie in the hospital. I am here just in case. Here to keep my father company. Here to try to make sure my mother moves more easily through the complicated sequences of hospital care. Here to get her home as quickly as possible.

I have come to that place in my life: I am caring for my own children, big enough to not need me at all moments of the day, but often needing me more, needing me to be figuring, wondering, considering with them in more complicated ways. This time of tending my children blurs and overlaps with the beginnings of tending my parents. Helping them out here and there.

And then, my father returns to the waiting room from a trip to the bathroom and from a walk out to the car to find something to pass the time. He gives me a small smile and walks over to our chairs with his lopsided gait, never quite having regained his surefootedness after his knee surgery a few years ago. He eases into the chair beside me and says, “I should have left a trail of breadcrumbs. I got a bit lost.”

I look at him, assessing his seriousness.

He does not seem upset. If he was lost, he seems to have handled it. And then, I look down at my hands in which I’m holding the fiction I grabbed as I packed at home. It had remained tucked away in my bag until, alone in this room, I had dug it out in order to help me ignore the pain and sadness of the people around me, to drown out the daytime talk shows blaring on the TV in the corner of the room. To hold my gaze so I could give myself and those around me a sense of false privacy.

Its title? Breadcrumbs, by Anne Ursu.

In this moment, I realize that this book is my Floo Powder, my portal between two worlds. My magic beans, my potion in a vial, my key tied around my neck opening the last door I need to pass through. From the moment I started to prepare for this journey, and really for every moment, every major event of my life, there is a steady undercurrent of story. Moving like a river that guides and explains, flowing under the surface of real life. These fairy tales and children’s stories—with their themes and roles and relationships, their adventure and struggle with maturation and separation and needs and desires. They are told to us when we are young and are here with us in every conscious moment. We retreat to them, draw upon them, quote them, and use them between us as a shared experience and vernacular to guide us.

Fairy tales, given their oral storytelling origins, hold common truths. In fact, they must. For in order for one narrator to decide to pass them along to another, tales had to have been deemed good stories. Had to hold themes and roles and problems and resolutions that resonated with their audiences. They were told again and again until eventually they were written down. And then read again and again, until they became a part of our cultural history, and of our personal narrative and compass for our own lives, internal and external.

I look over at my father, my former woodsman, to see if somehow he knows, if he is referencing my book’s title. But he is not and does not know that I am reading this modern fractured fairy tale. He is instead listening to his own internal map, relying on the network of story that is within him as well, trying to make meaning, trying to understand these unfamiliar woods by following the rules of those storied woods he does know and has visited before. Hoping that perhaps he will know what to do now.

He and I have been adjusting ourselves to each other in these past hours, figuring out who sits and who stands near my mother during admission. Who gets the first kiss goodbye as my mother is wheeled off to surgery. Who answers the phone when my mother’s name is called in the waiting room. Who pays for snacks from the cafeteria. Who is in the lead and who is following behind on this path. It used to be him leading, always. But today, as uncomfortable with and as ill-suited to the task as I may feel, I think it may be me. If my father is not the woodsman, then I may not be the little girl anymore. Even if these woods are dark, and the nurses and wolves are scaring me a bit.

My father, as many do who reference this story, seems to have forgotten that the trail of breadcrumbs was faulty. On their first trip to the woods, Hansel cleverly drops white pebbles to lead them home. It is on their second trip that he uses breadcrumbs, his only available material, and these impermanent, edible, and disappearing trail markers are what ultimately cause Hansel and Gretel to get lost in the woods, unable to return home. Only then, faced with this problem, does Gretel rise to the occasion and lead the way on her own self-determined path to their happy ending. Somehow it is troubling to me that my father has forgotten that we don’t want to leave breadcrumbs, that what he needs is something more permanent. And inedible.

So far? My role is to hold things. I have placed my mother’s car keys in my shoulder bag next to my cell phone and have tucked her wedding ring, the one they snipped off her finger in case there were complications, into my change purse. Before I did so, I checked the engraving. The nurse had not cut through the inscription, my parents’ initials, followed by the date of their wedding. Somehow I am relieved. And like any fairy tale, each item I collect has some kind of meaning, some kind of purpose, each statement a window into underlying wishes and needs.

•••

This is what happens on journeys—the things you find are not necessarily the things you have gone looking for.

Anne Ursu, Breadcrumbs

My phone vibrates, a text from my brother. He is at work, a doctor, several states away. He hasn’t heard from me. My father and I have been waiting here for six hours for what we were told would be a three-hour procedure. I have not texted my brother for a while with an update. Because I am trying to sit still, trying not to move. Movement might be interpreted as panic by the imaginary wolves of possibility in the room with me. I am waiting for some information. I have been hoping not to have to send a message admitting that I have no idea what is taking so long. I know right now where my father is, but I have lost my mother for a bit.

Despite the states separating us, my brother and I are here together in this new place. Trying to figure out how to make this shifting role with our parents work. And how it will work between us. Because we are still the same people, the same children. We are still on the same path, walking together, he the older brother, me the younger sister. Our roles, our history, the story of our childhood together cannot be ignored as we take these next steps.

My trickster brother, my fellow backseat rider, has grown into a brilliant and successful adult. He actually saves lives on a daily basis. In his role as Hansel, his focus is on the world in front of him, and he moves through it with strength, skill, and confidence. He expects, as darkness falls, for the white stones he wisely laid earlier to begin to glow, to keep us safe, and he expects to know the right thing to do.

I’m not sure he would ever leave a faulty trail of breadcrumbs. That’s my role. I am much more likely to leave behind a trail of the accidentally vanishing variety, birds eating the crumbs and making our way home impossible. And this mistake would not shock anyone who knows me. I have been given the role of observer, wanderer, emoter, but rarely leader. My ear is more likely pressed to the forest floor, listening to the rumblings and undercurrents and meanings that are held beneath the surface of the action above. When I try to walk the path that Hansel would blaze, I trip and stumble and get lost, because this is not my role and not the path I would choose for myself. But with my lifetime of poorly chosen materials, I am afforded the ability to laugh at myself and not be very surprised to find myself lost in the woods because I was listening to the rhythms below, with no plan for getting home. I look about the room. It is relatively empty. There is no one to ask for directions.

Some time later a nurse and then a doctor come to tell us everything has gone well. My mother is doing just fine and is in recovery. I am relieved. And a bit angry at the doctor for the frozen fitful slumber my father and I have been plunged into for the past three extra hours. I ask a few questions. My father is quiet but asks for reassurances that she is okay. My mother’s doctor looks tired. I try to forgive her. I tell her I hope she can go rest for a bit. She looks taken aback. I realize that this was not the thing to say here. She is the one doing the caring.

We are told we have another hour before she will be ready to be transferred to her room. I tell my father I will be right back, and I go to the bathroom. I text my brother and Jonathan from the stall. I need a few moments of aloneness with my relief.

I emerge and go to wash my hands. I look at myself in the mirror. I reach up to my hairline and pluck a grey hair from where it has been sticking straight up toward the florescent lights. I stare at my reflection for a few moments before another person enters the room.

Mirror, Mirror.

•••

She had done her best to be prepared, but had not anticipated crazy people.

Anne Ursu, Breadcrumbs

Despite all my preparation, packing, and collecting along the way, I had not expected to get into an elevator with my mother, pale and scared looking, still under the influence of anesthesia. Nor had I anticipated where this elevator would take us.

“Did you and Dad get some breakfast?” she asks when she sees me walking toward her. Despite the drugs, she knows her role, her lifetime as the Baker. I feel comforted that she seems lucid. This is a very typical question from her. I answer that yes, we have. And glance at my father. Should we tell her we’ve had lunch, too? I wonder through my eyes at him. He does not answer. Unlike in fairy tales, we cannot apparently speak with our minds.

I squeeze in beside her and hold her hand, lifting my large shoulder bag above the railing of her bed. I turn to her. She is focusing on me. Staring at me. The attention is unsettling. I crack a few jokes and then swallow more, realizing that the recovery room nurses in this incredibly small space with us might see my retreat to being silly as inappropriate. Or more likely, as the rantings of a heartless mad woman. My father is silent, making himself as skinny as possible, standing behind my mother’s head. I am not sure she knows he is there.

“I think I might be talking funny,” my mother says thickly, as though her face is numb and her tongue non-responsive. And then, “Did you and Dad get some breakfast?” Her eyes grow wide, and even more scared as I answer that we have. And lunch, too. “Did something go wrong? Am I okay?” She’s garbling the words.

Her vulnerability is dawning on me. I respond by being overly cheery. I explain to her what the doctor told us, that it just took longer than they had anticipated, but that there had been no complications. I start trying to be funny again. My father can’t hear me. My mother is loopy and confused. The recovery room nurses just look at me. I am babbling.

“Did you and Dad get some breakfast?” she asks for the third time. I turn to my father, who either has not heard her or is really good at hiding his reaction. Are we trapped in some small circle of time together, sleeping in this moment for eternity while the rest of the world moves on without us? Or maybe I am just being childish and this is just something that happens when Moms come out of anesthesia?

This hospital. I was born here. And as if to make this all come full circle, I follow my mother’s wheeled bed out of the bank of elevators and onto the maternity ward. “Ah,” I say, “this is where we met.” I say it mostly to myself. But my groggy mother and her recovery room nurses look at me with equal amounts of confusion and concern.

•••

“Critics who treat ‘adult’ as a term of approval, instead of as a merely descriptive term, cannot be adult themselves. To be concerned about being grown up, to admire the grown up because it is grown up, to blush at the suspicion of being childish; these things are the marks of childhood and adolescence. And in childhood and adolescence they are, in moderation, healthy symptoms. Young things ought to want to grow. But to carry on into middle life or even into early manhood this concern about being adult is a mark of really arrested development. When I was ten, I read fairy tales in secret and would have been ashamed if I had been found doing so. Now that I am fifty I read them openly. When I became a man I put away childish things, including the fear of childishness and the desire to be very grown up.”

C.S. Lewis

Once we are settled into her room, we focus our efforts on the same things that I imagine my mother and father focused upon when we were last here all together forty years ago: eating, sleeping, and pooping. I notice families outside her door taking their first walks in the halls together, babies pushed before them in wheeled bassinets. I see lactation consultants come and go. I watch some newborns being cared for in the nursery. I run into tired fathers in the kitchenette downing coffee. I think of my children, and of my now-woodsman, Jonathan, to the north of here. And turn back to my parents.

I order my mother meals on the phone and I take my father for a third meal in the cafeteria. On my mother’s ward, the mothers’ ward, we pass by the newborn nursery at its center. I see myself there as a baby and see my own children being given their first baths in nurseries very similar to this one. I quietly register that I am now like my mother in another way: there will be no more newborns for me.

My mother is struggling with her lack of control, of being the one who now needs tending, and her mood is rolling in unexpected waves. As she wakes from her long slumber, we are cast as children, then as evil step-parents, pulled in and then pushed away. Her eyeglasses now returned to her, she holds them up, looks at me through them and then not through them. With glasses. Then without. Over and over. She sees me blurred followed by invisible, and I am not seen well in either case.

I step out and go for doughnuts. I nibble from the gingerbread house for a bit and bring back treats to my parents. Upon my return, I once again enter this shifting, muddy, dim terrain populated by the where and who and when we are, and by what we packed and who all of us have been up to this moment. We crash and bump and collide into all of these selves in the room together. The Woodsman and Gretel, the Snow Queen and the Gingerbread House Woman, the wolves and the birds. Hansel is on the phone, asking me about medications for which I do not know the names. I try to make light, but know that I should have asked about this already. I would like to talk to him about how full and noisy and messy it is here in the room with all of our past and present selves dancing about like wood nymphs. But I don’t. I just go find a nurse to answer his questions.

The chaos in that room. The spilling and boiling emotions. The things that have been felt and seen and said. My instinct is to talk, to process them, as I have awkwardly attempted to do throughout the day. But I choose to hold them instead. And not just hold them, but bottle them, thrust in a cork, and pop them into my bag. That is something I can offer all of us. For now, I will keep my awareness to myself so we can all continue moving forward together. I can wait to press my ear to the ground. I can choose to just keep walking.

•••

Now, the world is more than it seems to be. You know this, of course, because you read stories. You understand that there is the surface and then there are all the things that glimmer and shift underneath it. And you know that not everyone believes in those things, that there are people—a great many people—who believe the world cannot be any more than what they can see with their eyes. But we know better.

Anne Ursu, Breadcrumbs

Finally, I am heading home. My mother is doing well. My father is at the helm. My brother will be here later in the day. We have our happy ending. Yet I know I have now entered unfamiliar woods. And that I am going to have to walk around in them for some time now. And contend with the rustling noises.

When I get to my car, I notice that I have a message. From my father, to whom I have just said goodbye a few minutes before. I dial voicemail and set my phone on speaker. I begin my long drive back to my children, hoping to meet them outside their school, to hear about their days.

I just got outside and noticed there is a steady sleet coming out of the sky. The temperature is hovering at freezing. But as you drive north, it may be slippery. I don’t think it is going to accumulate, but I wanted to let you know. Please drive carefully.

The Woodsman has returned. So I grab a bite of turkish delight. Feel the fur coats brush against my face as I pass back through the Wardrobe. Flick the reins of my Subaru. And head north, toward home.

•••

REBECCA STETSON WERNER lives in Portland, Maine with her husband and three children. She has a doctorate in child psychology but uses it mostly to help her better understand all of her parenting blunders and to help her children choose good books. She has contributed to Taproot Magazine and Grounded Magazine and writes about parenting, children’s books, and life in their very old home at www.treetoriver.com.