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.”
“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.
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.
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.”
“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?”
“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.”
“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.”
“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?”
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.”
“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.”
“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.
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
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.
“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 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.
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.
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.
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.
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.
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.
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.
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 answerthat 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.”
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 MagazineandGrounded Magazine and writes about parenting, children’s books, and life in their very old home at www.treetoriver.com.
My Hodgkin’s Disease had returned—my doctor was fairly certain. It turns out he was wrong, that the strange glows on the scan were … well, something other than cancer. But Emily and I didn’t know that at the time.
This was in 2006, six years after my last radiation treatment. This time, it was in my thigh rather than in my neck and chest area, but nonetheless, the doctor seemed sure that it was back. I would need to have a biopsy performed, of course, but that felt like just a formality. A hunk of lymph nodes would be cut out, and then we’d begin treatments—likely radiation therapy, but a bone marrow transplant remained a possibility as well. Time was off the essence. I was likely going to die. My wife and I had serious thinking to do.
What we did know was that, when I’d had my bone marrow transplant in 1998, my doctor had said that I had a forty percent chance of living for more than five years. We also knew that I had radiation therapy to treat a recurrence two years after the transplant. Emily and I didn’t meet until after I had completed these treatments, but we had discussed my medical history, and what it meant for our relationship, once we were “seriously” dating—we met in grad school while working on our Ph.D.s in English, and had tried to keep things relatively casual so that we wouldn’t be tied down to another person. Neither of us wanted to compromise on our professional ambitions by becoming too attached to someone similarly ambitious, so we self-consciously tried to limit our relationship to one of hanging out and hooking up—a bit more intimate than friends-with-benefits, but nothing too emotionally consequential.
But at some point while hiking through the Missouri wilderness, or discussing the latest academic scandal reported in The Chronicle of Higher Education over coffee, or drinking cheap wine in her small basement apartment, we fell in love with each other, and we decided the best thing to do would be to get married. I couldn’t quite tell you when I realized that Emily mattered more to me than keeping all of my options open for the sake of my career, but I know that it happened.
Our life together was filled with reading, writing, sending out academic articles and creative work, supporting each other when the eventual rejections came, applying for academic jobs, worrying about money. We also played Scrabble, sought out strange landmarks like the world’s largest statue of a goose (“Maxie” in Sumner, Missouri), watched livestock shows at state fairs, and—in the words of the girl in Hemingway’s “Hills Like White Elephants”—we would “look at new things and try new drinks.”
We had both been involved with other people before we met each other, of course. Both of us had been in college relationships that had continued for far too long, with protracted break-ups and broken hearts. After my bone marrow transplant, my college girlfriend and I were breaking up for the final time. I reflected on what I wanted in a romantic relationship. Someone adventurous, willing to travel and have new experiences. Someone who loved literature as much as I did, but who could also enjoy the same type of lowbrow culture I enjoyed—I wanted to be able to talk about books and art with someone who could also appreciate the sublime genius of Don Knotts’s performance in The Ghost and Mr. Chicken. Someone who had a sense of humor, who would laugh if I called her “scumbag” and would be willing to high-five me after sex. In short, I wanted to be in a relationship that was fun—I’d had enough of passive-aggression and adolescent angst.
As it happens, Emily had recently reached similar conclusions about her own love life. It wasn’t love at first sight, but we immediately knew that we made each other laugh and had fun together—she was not only down with the high-fiving but was willing to call me “dude.” Things grew from there.
As Emily and I contemplated what a malignancy would mean for our relationship, I realized I couldn’t really say that life was unfair. I had been fortunate to be disease-free for as long as I had been, I figured, and I had experienced a powerful love and friendship the likes of which I don’t think too many people get to experience. The only disappointment was that we couldn’t make it last forever, and it looked like our time together was coming to an end.
In the week between the tentative diagnosis and the biopsy that would ultimately be reassuring, we spent our days crying, our evenings drinking wine and trying to reassure each other that this would be okay, nothing we couldn’t handle. I’d done all this before, with only my parents for companionship and support, listening to depressing music like Warren Zevon’s Life’ll Kill Ya or Lou Reed’s Magic and Loss alone in the den that my parents had hastily converted into a bedroom when I’d been diagnosed. With Emily beside me, it wouldn’t be nearly as lonely or depressing. She knew how bad things had been before, how dark those days had been.
“I’m going to take care of you,” she said, looking at me from across the table on our screened-in porch while we drank our Pinot Grigio. “It’s not going to be like last time.”
I nodded and tried to agree. We said such things to each other, but hanging between us—unspoken, but mutually understood—was the understanding that a recurrence at this point could very well mean I would die.
The morning of the biopsy, Emily drove me to the hospital. After the nurse called me from the waiting room to the pre-op area, I handed Emily my wedding ring, which she put on her thumb. I kissed her goodbye.
What followed seemed to take forever—the shaving, the pre-surgery talk with the doctor, then watching the anesthesia drip through my IV.
I shut my eyes, then opened them to find myself sitting up, in recovery. It happened that fast. Emily and a nurse were laughing. I had a Diet Coke and a glass of water in front of me—my usual beverage order, if I’m not drinking wine or beer.
“Where did this Diet Coke and water come from?” I asked.
Emily smiled. “You asked the nurse for them when you woke up after your surgery.”
“Oh,” I replied. “I must have thought I was at a restaurant.”
At this, both Emily and the nurse exploded in laughter again.
“That’s the fourth time you’ve asked that question,” Emily said, “and then followed with ‘I must have thought I was at a restaurant.’”
I laughed too—although I should tell you that, later, when we told the story to friends, they were horrified. “I would have been afraid that it was permanent,” one friend replied. That obviously hadn’t occurred to Emily—or else, she is so used to the way I am normally that she didn’t worry that any lasting brain damage would be noticeable or change her life in any fundamental way.
At one point—still foggy and a bit confused—I glanced down at my left hand. My wedding ring was back where it belonged.
“When did you give this back to me?” I asked, holding up my hand.
This time, Emily did not laugh as she ran her hand up and down on my arm, telling me that it was the first thing I’d asked for—before the beverages, even—when I saw her after coming out of surgery.
“You said that you missed it,” she told me.
Emily and I have been together for eleven years, and as happy as that time has been, I have to tell you that we argue as much as any couple. Maybe even more—we can both be strong-willed and opinionated, especially when it comes to matters of teaching and writing, which are important parts of our careers. Sometimes, we argue over a work of literature. Sometimes, it’s pop culture. We rarely argue about politics, but it happens, sometimes.
More rarely—but more seriously—we fight about the important things in our marriage. Whether one of us takes the other for granted. Occasions of self-centeredness. Concerns that one of us prioritizes work over our relationship with each other. These are the serious fights. The ones that result in tears for her, or me stomping out of the house to “go for a walk, to clear my head.” These are the times when we get overwhelmed with thought—fears, suspicions, and pressures that probably come from outside the marriage itself, but are nonetheless real when we contemplate them.
But what I like about the story of my recovery from surgery is that it testifies to the fact that loving her isn’t something I have to think about—that even when my mind is wrapped up in a confused fog, when I’m basically just a being incapable of reflection, operating on instinct, unconscious habit, and biological imperative, I still love her. More than I love my job, more than I love literature, more than I love anything in the world. And I love her first, even before I get my Diet Coke and glass of water.
WILLIAM BRADLEY has been married to the poet and Renaissance scholar Emily Isaacson for almost nine years now. She was the one who encouraged him to try to publish the creative nonfiction he wrote, and since then, he has had work appear in Fourth Genre, Brevity, The Normal School, Utne Reader, The Missouri Review, and other magazines. They spend most of their time in Canton, New York, where he teaches at St. Lawrence University.
I was forty, and single, and pregnant, and jubilant. I blossomed during a perfect pregnancy and then proceeded to give birth to a beautiful baby boy I named Ryan Peter Schoenthaler, eight pounds twelve ounces and twenty-one gorgeous inches long. He died nine days later in my arms, still and cool.
I buried that boy on a sunny hillside in a tiny casket designed to look like a bassinet, and by the time I stumbled out of the cemetery, I was a dead woman walking. Some days I couldn’t keep my eyes open; other days I could barely speak. I dreamed in adjectives: impossible, unbearable, unimaginable; I woke up with verbs: pulverized, imploding, eviscerated.
Two years later, I gave birth to a boy named Kenzie James. I got through the pregnancy and birth through denial, plain and simple, with one permanent pricetag: nine months of total amnesia. Of that period of pregnant pause, I remember OJ Simpson and I remember grinding my teeth, and that is really all.
Three miscarriages and three years later, when my last son came along—Cooper Craig Schoenthaler—I was wholly awake and fully attentive and I remember everything. Of the six pregnancies, I am left with one birth story.
Cooper was delivered by Cesarean section. An average C-section takes six or seven minutes from incision to delivery; Kenzie’s took an endless half-an-hour; Cooper, eleven minutes. Eleven minutes to a lifetime.
I lay there while they opened me up again, floating along the arc-line that had gradually and irrevocably led me to this scene—lying flat on my back in a yellow room with bright lights. I was a woman physician under the care of women who started out just like me, women who struggled over books and tests and money and hostile men in positions of power for years at a time and who now put their bodies and souls on the line.
I remember my obstetrician Sharon coming to my hospital room at midnight to attend Ryan’s brain-dead baptism. I picture her holding my hand in the NICU that night and then again and again over the next five years. I think of all the phone calls: I would sob and she would let me make any appointment any time as I worked through the surviving of survivorship.
I think of all the tables I have laid on and all the doctors I have seen—a long line, a stately procession—giving me good news and bad news and no news at all. I think of Ryan’s delivery and his death. I think of how I lifted his body straight up above me, offering him to the sky. I think of Sharon two years later holding Kenzie aloft, in triumph, a giddy elevation of child-spirit, a peak moment, a crystal. I think of the dim light in Ryan’s NICU room where his soul sailed away, and the bright lights in Kenzie’s delivery room when his soul sailed in.
I think of the night light that Kenzie uses—how at three he is already such a singular little person who wants to look at books alone at night, how his soul is full of light and always has been. I feel the presence of both Kenzie and Ryan very distinctly within me, as well as a whole line of women who have given birth before me—my grandmothers and my friends, my mom and all the bereaved women in books and on buses.
I listen to the heartbeat monitors and think of Ryan’s heartbeat ceasing and Kenzie’s frantic heartbeat when he’s feverish and the roaring in my ears each time I miscarried and I can’t help but compare them to the steady beat-beat-beat that is my own heart’s rhythm in this room at this moment.
It’s a long eleven minutes.
Then I hear Sharon start to croon. In seemingly an instant, she again holds one of my sons aloft in the light. The overhead lamps create an aura, a halo, an embrace and I experience blindness reversed as the light heightens every pore and every limb and Cooper is outlined in beauty, screaming shrieking bloody beauty. He is alive, he is aquiver, he is a soul.
They bring him to me wrapped up and warm. I get my first good hard look at him: he is red-faced and dumbstruck, and I am the same.
I reach for him. No one says a word. The room is quiet; it feels like an altar. There’s no heart monitor machines now, no barking loudspeakers, just the murmuring of Sharon and her partner, and the nurses counting sponges. I kiss Coop over and over—his perfect cheeks, perfect skin, perfect neck. He turns to me when I speak.
I lay there with this miracle in my arms, flooded with all that can happen over the course of half a decade. I remember the long period after Ryan’s death when a pain-free interval seemed impossible, when anguish never ended and never waxed or waned.
But I realize, lying there, that somehow, somewhere, something carried me through. It is too strong to call it “hope”: there was no hoping back then. It’s too strong to say it was anchored in me—it was not. But it must have floated, in and out, with the moon, or with the seasons, or maybe with each breath.
Because something helped me hear the muffled words that sometimes bounced off the sheer rock cliffs of my pain. I began to hear the voices in the cemeteries I visited—voices of mothers who murmured that if I could just keep breathing long enough the tunneled darkness might begin to lift. I began to see the anguish of my cancer patients in terms of cells defying death. I began to connect myself to a humanity bound up with suffering—plague victims, war dead, road kill, religious martyrs, and most of all a long line of women who had keened over children in caskets.
Something had taken hold of me. It wasn’t optimism or confidence or faith in an equitable universe—that was gone and would never come back.
It was much fainter: a tiny turning, a whispered murmur, a miniature red berry lying deep and dormant. But the berry dropped a seed and the seedling took. A tiny bud appeared and on it there must have been a drop of dew, and that was where I let that little thing that must have been hope float. I never touched it, I never named it, I really never even knew it was there. I just let it float. I let my hope float. I let my hope float on an impossibly tiny bud and now I had another son, I had two more sons.
They move us to the recovery room where it is dimly lit and quiet. Cooper nurses. I am pain-free and at a level of peace that is hard to describe to this world. I curl up on the gurney in the darkened recovery room, all dreamy sated senses.
Eventually the nurse and I begin to chat. She remembers Ryan well. “Every time I pass Room 428 I think of all the flowers you left behind,” she tells me. Then we coo about Cooper, how beautiful he is and already such a good nurser and so alert and connected and smart.
She tells me then about her own difficulties with conceiving, her doubts and how frightened she has become. I can so completely relate to this young woman at the beginnings of yet another long trail. She says to me, “We’ve tried so hard to have a baby, but I’m afraid to keep trying. How did you keep your hope alive?”
I start to tell her, but I hesitate. I’m suddenly tired beyond imagining, my eyes and limbs feel weak and I am nearly asleep. I murmur, “Just let it float.” She says, “Hope Floats? Isn’t that a movie?” and I giggle into the pillow.
Lying there laughing, I feel them like a flash flood, the raw and precious lives that led us here: the lives where pain has a beginning but anguish has an end, where seasons start and berries fall, where there are voices that can pierce the darkness and where cells that split can mean life in one year and death in the next and where there are webs that connect us with our ancestors and that in the darkest winter there are buds that can act as cradles and that hope may not spring eternal but that it can absolutely float.
ROBIN SCHOENTHALER is a writer/mom/physician (the order varies by the day) who lives outside Boston with her sons Kenzie and Cooper. They are now seventeen and fourteen, and Ryan, had he lived, would be a freshman in college. Her website is www.DrRobin.org.