Jennifer shivers, then drapes one of the white blankets over her daughter’s shoulder. Like every hospital, this one keeps the temperature low to limit nausea. I notice the particular coolness and recoil, not from the strangeness of these circumstances but from over-familiarity.
My stepdaughter, Emily, looks pale. She’s in pain, which makes her angry. She will not meet anyone’s eyes or respond to their questions. She is 11 years old. The medical staff members of St. Jude Children’s Research Hospital probably think they can wear her down, win her over, but I know better. She’s gone over a year without speaking to me because I made the fatal mistake of falling in love with her mother, who has gotten used to answering for her.
Jennifer and I have been married for seven months; Emily has been sick for the last three of them. First the flu, then strep, then mononucleosis. The mono led, finally, to an ultrasound to determine the state of her spleen, which seemed to be swelling at an alarming rate, an infrequent complication. In fact, the ultrasound revealed that her spleen was fine but a tumor was growing from one of her ovaries and protruding from her torso. “Thank God for the mono,” the attending physician says with a smile. I am the only one in the room who smiles back.
It is a second marriage for both of us. Jennifer was the first person I met when I moved from D.C. to Raleigh, North Carolina, less than a month after the death of my first wife. Because I really didn’t know what to do, I had resigned from my position as part-time writer-in-residence at American University and moved to Raleigh to be near my own and my late wife’s parents. My wife’s name was Emily also, Emily Arndt ’06Ph.D., and she had been stricken with cancer as well, just another in the set of coincidences of my recent life for which I am not grateful.
Jennifer had heard of what happened through a mutual friend and contacted me to set up a regular play date for my daughter, Virginia, who was the same age as her youngest child, William. We met every Monday afternoon for 18 months and then began dating. I believe I said, “Virginia thinks we ought to get married, but I thought it might be more reasonable to start with dinner this Saturday night.” Or something equally clumsy.
The moment after Jennifer and I announced to our children that we were getting married, Emily ran screaming to her room and would not come out. The fact that two days after the ceremony we would move more than 800 miles to the Mississippi Delta did not help matters. Suffice it to say, it has been an exhausting transition.
As it became apparent that Emily was serious about this silent treatment, I was less hurt than bemused. I marveled at her will, and knew that, were I her, my need to please would not allow me to have been so consistent. I wonder if one day she will appreciate the irony that this strange power of hers actually attracted me to her, kept me in orbit, perhaps even saved my fledgling marriage.
This time, on these hospital rounds at St. Jude, I am largely a bystander, an outsider. In three days, I will drive back to Memphis for Emily’s surgery. I will take Jennifer out for sangria and fish, and her ex-husband, Emily’s father, back to his hotel room for a shower and a shave. Mostly, I will hold down the fort back home in Cleveland, Mississippi, finishing up my first year of teaching at Delta State University and trying to placate and comfort the children now under my sole care. On Saturdays, I will take them to see their sister and mother.
Over the next four months, I will make many trips between Saint Jude and our new hometown, which lies two hours south down Highway 61.Though the geography of the Mississippi Delta is remarkably flat, these trips will often feel uphill.
Part of what drew me to Jennifer, what continues to draw me, is the way she responds so gracefully to the events of the world. Manifest in every word she utters, every motion of her body, is her belief that existence is meaningful. She manages this, somehow, without coming across as sentimental. She mystifies me, although in a more pleasant way than her daughter. I do know she is comforted by expertise, that she trusts process, and I want so much to reassure her now. I also know better than to try.
There is, however, some reassuring tonal quality in the voices of the doctors and nurses, something there now that I didn’t hear three-and-a-half years ago. They know Jennifer’s daughter will be okay. They’re telling her this with every sentence they speak and every sentence they leave unsaid. I know this because I have been present in a room very much like this one. I have listened to terminology very like the words being spoken to us now. I have been present when the voices had no comfort to offer, voices desperate to stay as steady as possible, as if one careless syllable might launch an avalanche of uncomprehending anguish.
“Will I lose my hair?” Emily asks her mother from the bed. No one can answer. Only after the surgery will they discover that she will need three rounds of chemo. Though her prognosis is a very good one, much more promising than most of the children she and her mother will meet during their stay at the Ronald McDonald House, they will need to remain in Memphis until midsummer.
The book
I haven’t had a chance to open the package before now, but I know what is inside. A copy of my first wife’s book, Demanding Our Attention: The Hebrew Bible as a Source for Christian Ethics. The book’s dedication bears the names of our daughter and son. It arrived in the mail today, just before we drove to St. Jude. As I read Emily’s preface, composed before she knew she was sick, her voice comes back to me in such a palpable way that I’m grateful I’m sitting down.
Until it was inadvertently erased, I’d kept a message from her for more than a year on our answering machine, though I’d rarely had the courage to play it, just as I had yet to get out our few family videos. It wasn’t a long message, routine really; she’d called to make sure I knew when to pick her up from school.
This was better, hearing her voice in my head as her students must have heard it, as I heard it those bright summer mornings when our daughter was at camp and we were both flushed with our own work. Her tone in the preface is strong with conviction, and I realize it’s going to be hard for me to read any part of this book without slipping into memory. At the moment, I’m remembering one evening when the end of the long months of writing and revising was in sight. I was already in bed. Emily entered to ask me, tentatively, if it were okay to dedicate the project to our daughter, Virginia. For some reason, the fact that she was almost in tears struck me as sweetly comical. Not now.
Through the effort of Emily’s mentor and friend, Jean Porter, a Note Dame professor of theology, the book has been published more than three years after Emily’s death. Emily had just completed her first year as an assistant professor of theology at Georgetown University when, three weeks after giving birth to our second child, our son, Langston, she was diagnosed with Stage IV breast cancer. She died four months later, on December 1, 2007, a few months before her 37th birthday. I do not know how long I will have to wait for the language to tell you precisely what I am feeling as I turn the pages of her book for the first time.
Demanding Our Attention, as the book description will tell you, asks, “What can we learn today about human relationships from reading the Hebrew Bible, filled with such ancient stories as that of a father who raised a knife to slaughter his beloved son? . . . Focusing on a close analysis of the akedah — the Genesis account of Abraham’s near-sacrifice of Isaac — Arndt demonstrates the power of even the most troubling and uncomfortable Old Testament narratives to teach valuable ethical lessons.”
Demanding Our Attention began with Emily’s interest in Kierkegaard’s Fear and Trembling. In many ways, the scholarship of the first four chapters is prelude to Emily’s own reading of Genesis 22 in the final chapter. She equates reading and rereading difficult texts to the ethical act of engaging the stranger. “In Christian ethical traditions, the ‘other’ has claims on us, has authority in our lives. . . . Relating authentically and transformatively toward others, loving our neighbors, can be understood as giving them critical and ongoing attention, even when they seem incomprehensible.” The risk is complicated by her confession that her long engagement with Genesis 22 has already changed the way she relates to other human beings. “Just as the concerns of the text and those of the reader, however distinct, are both significant and valuable in authentic engagement, so too is the concern we bring to the other with whom we are called to be in relationship.”
Emily’s reading begins with the apparent contradiction of God’s command to Abraham that his “offspring shall possess the gate of their enemies” and that through them “shall all the nations of the earth gain blessing for themselves because you have listened to my voice.” The problem, of course, is that the voice has asked Abraham to sacrifice Isaac, the only means through which the promise can be fulfilled. Her own reading identifies Abraham as the “main human agent,” while acknowledging the “long tradition, evident in ancient midrash, of viewing the story as a trial for Isaac as much as for Abraham.” She suspects this is because she has “lived a rather privileged and empowered life.” She writes, “I do not find myself concerned with finding my voice, reclaiming my presence, or recovering from horrible victimization.” Instead, she is made aware of the challenges and obligations of having power over others.
In her introduction, Jean Porter captures something of the shock and grief with which those who loved Emily continue to respond to her death. “Near the end of her dissertation, Emily writes movingly of her own experiences in writing the dissertation. . . . I could not have foreseen that Emily herself would be the beloved child, the child of so much promise, whom we would be called on to sacrifice.”
The knife
“Mrs. Arndt, you have cancer.” Doctor. It’s Dr. Arndt, I thought. On the great chain of being, I was sinking like a stone. Later, when a nurse did address her as “Dr. Arndt,” she wouldn’t have it. Please call me Emily. Dr. Jacqueline Laurin, a kind doctor and a specialist in hepatology, left her office to give us some time. Emily seemed in shock.
I’d been dreading those words since the morning after our son was induced and Emily’s condition failed to improve in the ways the doctors expected. Throughout her entire pregnancy, she’d felt rotten. First, they’d diagnosed her as anemic, then with gall bladder trouble. Finally, they’d guessed she was suffering from a rare complication of pregnancy called fatty liver disease. Fatty liver is often a dire diagnosis for the child, but the mother usually recovers if the condition is discovered in time. The only remedy is to induce delivery, which doctors did immediately, five weeks before the due date.
I’d spent the night of Langston’s birth in the NICU beside my pink giant of a son, perfectly healthy except for slightly underdeveloped lungs and the need for him to learn how to latch on to his mother’s breast. Our near-sacrifice moment: the NICU nurse was so astonished at his size and evident health that she couldn’t stop laughing. Under the warming light, she showed me how to give him a bath and kept him out of his incubator longer than she said she should.
The day of her cancer diagnosis, Emily and I spent our 10 minutes of solitude in one long, silent hug. Dr. Laurin opened the door to ask us how we wanted to proceed. “Please do everything you can,” I found myself saying, and she sprang to the phone on her desk. The doctors at Georgetown Memorial Hospital immediately began hunting for the site of origin. For two days, everyone around us seemed able only to whisper. Finally, they discovered two tiny tumors in her right breast. These tumors, too small to be detected by a physical exam, inexplicably spread, almost immediately it seems, to what most doctors consider the most lethal destination, Emily’s liver.
Within minutes, we were assigned an oncologist who would manage Emily’s treatment. We were told that Dr. Minetta Liu had the reputation of never giving up on a patient. We walked the long hallway in a daze and shared the elevator with a toddler on a large gurney and a man who looked like he must be her grandfather. The little girl was sitting up, smiling and clapping her hands, heedless of the many machines to which she was tethered. Her head was bald, and large hearing aids awkwardly cupped both of her ears. Her face and arms and legs were puffy from excess fluid. The grandfather glanced up at us as we entered. His face was kind but turned grim when he saw Emily. It struck me again how little I had noticed her evident disease.
“Some things are worse,” Emily said as we stepped off the elevator, and I knew she was thinking of her two children waiting for us back at our apartment; they’d spent the last two days of limbo clamoring for our return and competing for their grandmother’s attention.
Part of Dr. Liu’s compassion lay in her frankness. She tried several times, I think, to prepare us for the fact that Emily did not have long to live. She sent us home whenever she could. At our first visit, she told us that, statistically, only 25 percent of patients with Emily’s diagnosis live longer than five years past discovery of the disease. She tried to tell us that because of the strange way the cancer chose to spread inside her, Emily’s case was atypically dire. Add to this perfect storm of circumstances the obvious fact that her body had already been through so much, and it is a miracle she lived as long as she did. I am still staggered by her strength in those months, the courage of her calm.
“Five years,” Emily said at some point on our drive home. “Virginia will be only 10. Langston will be the same age she is now.” This same thought will not stop occurring to me on the fifth anniversary of her death.
We had a week before her first infusion of chemotherapy, and the only thing Emily wanted to do when we got home was to give Langston his bath. We put the infant tub in the center of our bed, so after we’d dried him off, Emily might nurse him for the last time. The drugs she’d be getting would show up in the breast milk, so we spent that week getting Langston used to the bottle. I think only Virginia was happy about this particular development, as she finally got to feel what it might be like to be a big sister.
I spent every minute I could on the computer. I found a diet that was supposed to help Stage IV patients and ordered organic berries from Oregon. With a Champion Juicer sent by dear friends down South, I began to make strange smoothies. Emily did her best to drink whatever I brought. God knows if it helped. In the end, Emily would only have to suffer through the side effects of two infusions. Infections, including one lingering for weeks in her infusion port, would keep her hospitalized for two of the four and a half months left to us.
Within weeks, she became too weak for our evening walks, though I remember Emily’s triumph of walking two blocks with a friend to watch Virginia and me make it to the top of a climbing wall at an October Fun Fest. “Is she really my daughter?” asked the woman who’d suffered from vertigo all her life. She hadn’t been able to leave her bed since leaving the hospital two days before, and I jumped when I saw her approach, dizzy with pride.
Two days before Thanksgiving, I woke in the night to find Emily convulsing beside me. Dr. Liu had warned me that the ER staff would have to be persuaded to treat someone in such advanced state of disease. Blessedly, our children somehow slept through the necessary commotion of ambulance transport and woke the next morning to find neighbors sleeping on our couch. (I believe they went to the zoo that day.) Reluctantly, the EMT personnel strapped Emily into a gurney, and we made the short drive to the hospital. “Are there any other health issues?” the ER attending asked me. “Isn’t that enough?” I answered. He was a bearlike man with a bear’s beard, but he spoke warmly: “Yes. You get the prize.”
The next afternoon Emily’s initial physician, Dr. Laurin, surprised me by walking into our room in the ICU. “This is treatable,” she said. “Her fluids are out of balance, that’s all. I saw her on the list of admits this morning and wanted to come by.” I wanted to disappear into the kindness of her voice and was so encouraged I left to check on the kids.
Dr. Laurin was right. Emily was granted one last day of consciousness. I was not there when she woke the next morning and was so delusional about how badly off she was that I stopped for coffee on the way to the hospital. This still keeps me up some nights. She was clear-headed when I arrived and frightened that she’d lost two days.
The last thing she’d remembered had been the strange conversation we’d had just before going to bed. I’d just gotten Langston to sleep and had joined Emily on the couch. Her evenings at home were becoming fewer and farther apart. In the beginning, before the cancer and chemo wore her so completely down, we would sit across from one another and exercise, a gentle routine designed to combat the long periods of inactivity. Emily called them our “dates.” This time though, we were both too tired and spent an hour holding hands, not saying much of anything. Around 10, she asked me to help her put on a pair of socks. Except she found she could no longer say “socks.” The word “boots” now meant socks in her mind. “Do you mean ‘socks’?” I asked. No, she meant boots. Boots.
I remembered thinking how glad I was that she’d been spared, mostly, the symptoms of confusion and disorientation that occur when contaminants in the blood slip past an ailing liver and enter the brain. How funny, she told me, that the boots misstep is what stuck with her, the only moments she’d been able to recall of the last two days. And she laughed right there on her bed in the ICU. One of her old laughs, full-throated and easy. Later that evening, she became more and more confused. Desperate, I asked her if she knew who I was. “Daddy,” she said.
“No, who am I?”
“My love” were the last words she spoke. She did not regain consciousness again and died six days later.
Accord
It is past midnight. I am on the way home to the rest of the children, having left Jennifer and our daughter to the kind competence of the doctors and staff of St. Jude for the first time. It does not occur to me that this trip will become a sort of personal “attunement.”
Emily says in a footnote in her book that the word “attunement” can mean “‘bringing into harmony’ or ‘making [one] aware of, or responsive to’ something.” I wonder how many trips like this I will need to reach harmony in my own life.
“Attunement” is the title of the chapter in Fear and Trembling in which Kierkegaard’s narrator, de Silentio, speaks of an unnamed man who re-reads Genesis 22 his whole life, journeying many times with Abraham and Isaac to Mount Moriah. But not one of the readings has a happy ending. Not for Abraham, Isaac or the unnamed reader/witness of these stories. “Every time he came home from a journey to the mountain he collapsed in weariness.”
It is late, and I am jittery from coffee and the events and revelations of the day. I am not yet used to the way darkness takes over so completely here. Highway 61 can be a dangerous road to travel at night, but right now this isn’t my concern. All I am thinking at the moment is that it is a peculiar hell indeed to be hated by this girl. She seems to hate me almost as much as she hates herself, her own burgeoning body, of which, nevertheless, she can’t help but study every pouting glimpse.
Like my own life now, her life must seem very much like an alien text she cannot read. I cannot yet see that this anger I feel radiating toward me — even as I put mile after mile between us — will not flame forever; that she is not burning with rage but frozen with fear; that coldness has a bottom.
At some point over the next two years, between treatment and the slow, unsteady reintroduction of what passes in our present moment for a normal adolescence, Emily will reach absolute zero and begin to warm back to her life.
I am not able to predict that two years from this moment, I will finally be able to begin to write about the very different loves I feel for my two Emilys, and how terribly and surprisingly they continue to relate to one another in my mind. I cannot see that in two years time I will pick my younger Emily up from soccer practice and she will enter the car in a loud, adolescent rush of chatter and complaint, overloaded with the accoutrements of school and sport.
At some point that spring, it will occur to me that I am no longer the primary object of her scorn, and haven’t been, not really, for some time. I have, in fact, become a silent co-conspirator, an ally against the other things that beset a 13-year-old girl: the ridiculous demands of her coach and teachers, the idiocy of her classmates. Emily will have to return to St. Jude, of course, every three months, then every six months, then once a year for scans (once a patient, always a patient at this remarkable place), but these trips will eventually lose most of the worry I’m carrying with me now.
Driving back home through the deep darkness of the Mississippi Delta, I cannot see that my need to read and re-read this book on the passenger seat beside me will be greater than my desire for its material preservation. It will stay by my bedside, its spine bent, its pages dog-eared, bearing in silence its marginal scars of comment and correction, those testaments to my need of its ongoing sacrifice and evidence of my eternal attention.
Mike Smith has published three books of poetry, including Multiverse and Byron in Baghdad. His translation of Goethe’s Faust appeared from Shearsman Books in 2012. Until her death in 2007, Emily Arndt was an assistant professor of theology at Georgetown University.