My sister, Jackie, calls to tell me she has a brain tumor. Actually, three brain tumors. Three large, aggressive, inoperable brain tumors. We thought she had a lingering inner ear infection; a week or so ago we teased her about being tippy with it. She laughed. She didn’t tell us about the terrible headaches or that the doctor had sent her for a CAT scan “just in case.” She didn’t want to worry us.
By the time I get to her house, she’s begun to vomit. She’s in bed, alternately burning up and freezing. Her teeth chatter. She’s gray. Her eyes are closed because her head hurts so much—and the pain keeps getting worse.
Her husband, Dan, calls our family physician, who tells him to bring her to the hospital now.
But when Dan tries to help her out of the bed, her legs fold. She can’t walk. She puts one arm around his shoulder, one around her oldest son’s. Her feet wheel like a baby’s when you hold its hand and “walk” it before it understands what walking is, but they get her to the car that way.
The next morning, she’s no better. She lies rigid in the hospital bed, her eyes closed. Now and then, she makes a small, whimpering sound. We put cool cloths on her head, we hold her hands, we talk to her quietly.
“It’s all right, you’ll be all right,” we say.
Chuck, our family physician, is also a friend. He looks as pale and distraught as the rest
of us when he appears. I catch him in the hall after he sees Jackie.
“What’s the worst-case scenario here?” I ask.
He says, “You don’t want to know.”
“I do, actually,” I say. “It would help me.”
But he shakes his head, no.
Around noon the neurologist, examines Jackie, then motions Dan to step outside. I
follow. In the waiting room, the doctor perches on the edge of his chair and leans forward. The tumors are glioblastoma multiforme, he tells us. They are not self-contained; they send out tendrils that snake into the crevices of the brain. The largest tumor, deep, inaccessible, and life threatening, is in the left ventricle, through which cerebral spinal fluid created to cushion the brain must pass to enter the spinal cord. They won’t know whether it, or the others, are malignant until they do a biopsy, which can’t be done until Jackie’s situation stabilizes. Meanwhile, she must have a shunt implanted to relieve the pressure in her brain.
If the surgery is done in time, if she survives it, and if she decides to undergo radiation and chemotherapy, there is a one percent chance she will enjoy a natural life span. If the tumors don’t respond to treatment, she is likely to live a year, perhaps a little longer. If she forgoes treatment, her life expectancy is two to four months.
“She could die before we get her to surgery,” he says. “I’m worried about that.”
Dan looks shell-shocked, the lenses of his glasses smudged with tears.
He returns to Jackie’s bedside. I call my nephews’ high school, explain the situation, and ask that they be dismissed immediately and sent to the hospital. I call my husband and daughters, and tell them to come. I call people who need to know what happened and tell them as simply as I can. “We don’t know yet,” I say, again and again. “We just don’t know.”
Who calls my mother, and when? I can’t remember. But I remember dreading her arrival.
All afternoon, Jackie worsens until, finally, she’s taken to surgery. We wait. Soon, nearly fifty people have gathered to wait with us—family, friends, neighbors, workmates. My nephews’ teenage friends, gawky as baby swans. People…talk. About their daily lives, work, kids, plans. About sports and TV shows and movies. They remember things about Jackie that make them smile or even laugh. Her Even-Better-Than-Robert-Redford Cake, the goofy Christmas jewelry she loves to wear. Then they remember where we are and why, and the pleasure the memories bring melts from their faces, their eyes fill with tears, and it’s quiet for a long moment until someone speaks of something safe again.
I can’t talk. When people talk to me, their voices seem to be coming from far away and I can barely hear them. I long to be alone, someplace quiet where I can concentrate on what is happening to my sister in the operating room, see the tumors in my mind’s eye and carefully, carefully untangle them from her brain. But it would be rude to leave the waiting room—and worse, someone would surely follow to try and comfort me.
Finally, the surgeon appears, still in his blue scrubs. The shunt is in, working. Jackie is in the recovery room; she’s waking up, responding.
My mother arrives from the airport just in time to hear this. “I just knew she was going to be all right,” she says, beatific through her tears.
Which cracks my heart—and also makes me want to strangle her.
My mother was an English war bride, vibrant and luminous in photographs. She rarely spoke of the difficulties and disappointments she faced leaving the home and family she loved to marry my father and start a new life in America, other than to say that she was desperately homesick the first year. I was her first child, born near the end of that year—and I am convinced that the chronic sadness I’ve struggled with all my life began in the womb, where I felt and heard her crying. Which set us at odds right from the start: she was determined to be happy. My birth made her happy, and to maintain that happiness, I needed to be happy, too.
In time, my mother’s homesickness subsided. But with the shift from a romantic wartime relationship that flourished at parties and in pubs to the realities and responsibilities of real life, my father’s social drinking turned toward a drinking problem and her day-to-day life became fraught with anxiety. She was a proud woman, loathed to ask for any kind of help. She put on a happy face and, the harder her life became, the more determined she was to keep that smile in place.
Throughout my childhood and adolescence, I sensed but could not articulate the discrepancy between her outer and inner selves, which made me feel increasingly at a distance from her. And there was my own nature, too. Not only was I born sad, I was born wanting—everything. I saw things others didn’t see or chose not to acknowledge; skepticism became my default. It took me years and many hours of therapy to understand the mix of nature and experience that had created the hard shell of my mother’s optimism and how my own psyche was so definitively formed in opposition to it that the worst-case scenario of any situation is always the first thing I see.
My mother was a kind, generous, and compassionate person, beloved by her friends, by her nieces, nephews, grandchildren, and great-grandchildren. Her material needs were simple; she deeply appreciated any good thing that came her way. I saw and admired these things in her. I respected her independence, her work ethic—the spirit of adventure with which she swam with dolphins and parasailed in her seventies.
I loved her. But I never, ever felt close to her. The few times I tried to speak honestly to her as I struggled to understand how I’d come to see the world as I did, she was so hurt that it would have been cruel to persist. So I accepted the distance between us, lived the best I could with her efforts to help or comfort me in times of trouble, efforts which invariably made those times even more difficult.
This was certainly true during the fifteen months it took my sister to die. It’s also true that my own struggle to come to terms with Jackie’s illness and impending death, so different from my mother’s struggle, made that terrible time in her life even harder to bear—which I know will be a source of guilt and sadness for the rest of my life.
Before it was over and Jackie laid to rest, I had no way to think or talk about the drastic difference between the ways my mother and I had dealt with the progress of her illness other than that old standby, point of view: each of us sees the world and comes to conclusions about our experiences based on the experiences that shaped us. But, while we may understand, respect, and empathize with our loved ones’ various points of view and feel deeply compassionate toward them in the abstract, it doesn’t guarantee that we can make our feelings and actions match up when we’re together. Sometimes the people we love make us furious or frustrated or bored out of our skull or just plain crazy—and we can’t always help showing it.
It was learning about Arthur W. Frank’s work with illness narratives several years after Jackie’s death that brought a deeper understanding of the tension created by the different ways my mother and I processed the events of her illness. “People have suffered illness and died from it since the beginning of time,” he wrote. “The plot doesn’t change. But every person who suffers serious illness is different and every circle of loved ones and caregivers is different, each the star of the story they imagine about the course of the illness and how it will turn out.” Frank calls these stories “preferred narratives.” His work explores how the dynamics of seriously ill people and those who love and care for them are affected by the parallel stories of hope and grief they set in motion at the moment of diagnosis.
My mother loved happy endings; she never stopped believing in them. So, it was not surprising that our preferred narratives for the course of Jackie’s illness would be polar opposites. Mine was: We will be fully present in this test the cosmos has given us. Life is about loss; we will remember that. We will look at what we are facing as clearly and honestly as we can, while doing our best to understand and respect each other’s needs. We will be compassionate and, when necessary, forgiving. In the process, we will learn to know each other better, love each other more, and be freer to be our true selves with each other than we’ve ever been.
My mother’s preferred narrative was: Jackie will fight this, we’ll do everything possible to help her. If we believe hard enough that she’ll be all right, she will be all right.
I understood that my narrative was preferred. From the beginning, I knew that each of us would see Jackie’s illness and almost inevitable death in a different way and have different ideas about how to help her. But my mother not only absolutely, irrevocably believed in the arc of her narrative, she believed it was her duty to believe it. Our duty. Hope was a powerful force in her universe. Belief could make things happen, and not to believe that Jackie would get well was not only incomprehensible to her, but wrong. She simply would not consider it.
To complicate the matter further, every single one of us who loved and cared for Jackie imagined their own story, each with a different series of events leading to one of the two possible endings: Jackie lives, or she dies. Sometimes these narratives merged into a single line, bringing strength, solace, and a shared sense of purpose. Other times they tangled wildly, creating tension, heartache and regret among us.
And there was Jackie at the center of each story. Devastated by the diagnosis, disabled by the damage done before the shunt could be put in place, and paralyzed with fear, my sister became less and less herself as the chemo and radiation treatments weakened her and the spreading tumors effaced the essence of the funny, spunky, no-nonsense person she had been.
No narrative, just a silent, desperate plea. Tell me what to do to get better and I will do it. Just please, don’t let me die.
My mother has been sneezing and coughing for several days now. She insists its allergies, but Jackie’s resistance is so low that if Mom has a cold, she’ll surely catch it. Plus, the last thing we need right now is for Mom to get sick herself—prone to pneumonia due to years of smoking. “I’ll be fine,” she says. She doesn’t want to spend time going to the doctor when she could be at Jackie’s bedside.
“But you shouldn’t be with Jackie if you have something contagious,” I say. “I made an appointment with Chuck, just to be sure.”
She looks wounded.
I feel like a horrible person for suggesting her presence at Jackie’s bedside could be anything but a comfort, for being bossy, for being—myself. I’m exhausted. I barely slept last night; one voice trying to convince me that Mom’s coughing and sneezing really are just allergies, the other reminding me how guilty I’d feel if they’re not and Jackie gets sicker because I didn’t want to deal with Mom.
She emerges from Chuck’s office, radiant.
“Chuck says I’m fine,” she tells me in the car. “He said there’s no way he’s giving up on Jackie—and my positive attitude is a good thing. It’s important to stay positive. Oh, I feel so much better,” she goes on. “Yesterday I felt really down. Now I feel really up again.”
What I want to do is pull over, rest my head on the steering wheel, and moan. For the hundredth, painful, crazy-making time, I realize how fruitless and even cruel it would be to say, “Mom. Jackie is gravely ill, with a one percent chance of survival—and we don’t even know what surviving would mean. Can’t you see we need to prepare ourselves for the possibility that she’s not going to be okay?”
I should say, “Yes. People do survive brain cancer. Why shouldn’t Jackie be one of them?” The words are there, but I can’t make them come out of my mouth. It would feel like lying to myself, which I cannot afford.
“I’m glad you’re feeling more hopeful,” I say instead.
For a nanosecond her bright, cheerful expression falters and I feel even worse—if that’s possible—because I can see in it that she’s heard the note of the condescension I tried to hide.
Weeks later, when Jackie is finally well enough to go home, Mom and I visit her. She’s propped up in the rented hospital bed, the clutter of sickness surrounding her: lotion, ice water, magazines, Kleenex, remote control. Mom rubs her legs with Aveeno; Dan makes a run to the drugstore to fill prescriptions and pick up some Depends.
On the way back to my house, Mom says how happy it makes her to see Jackie at home, how much better Jackie seems there. More herself.
“I’m happy she could go home, too,” I say, seeing in my mind’s eye the narrow twin bed set as close as it can be to the hospital bed so that Dan and Jackie can sleep together again, the pictures of their boys at all different ages on the dresser, one of Dan and Jackie on a beach vacation, smiling. Jackie’s radiation mask, like a death mask, on a shelf in the closet awaiting her next treatment. The growing bald spot on the side of her head, shaped like an egg.
Over the course of Jackie’s illness, there were countless such moments, countless small and large failures of connection between my mother and me. I dreaded phone calls during which I had to be so careful not to tell her what she couldn’t hear. Dreaded the long visits that robbed me of the solitary time I desperately needed to maintain my own precarious balance. Jackie had always been the one of us who dealt with our mother best, who knew how to just be with her. More than once it occurred to me that, while I knew my mother loved us equally, I’d have been the easier daughter for her lose.
My mother’s preferred narrative did not prevail. She never gave up on it, though—not even when we called to tell her that Jackie was dying and she needed to come. Now. She stepped off the plane certain to be met with the news that Jackie had taken a turn for the better, still hoping, believing that things would work out fine. And she kept hoping, stunned and inconsolable, when Jackie drew her last breath.
My preferred narrative fared better. Our family did as well as any family could have, watching someone they love suffer and die. We saw Jackie through this time with as much understanding and respect for her and for each other as we could muster, given who we were,what we knew. We were compassionate and, when necessary, forgiving.
Were we fully present in this test the cosmos had given us?
Who could be, really?
Did each one of us face it as well and honestly as he or she could?
I believe we did, though there was certainly tension created by the wide range of points of view about what “well and honestly” might be. But we tried. We all tried so hard.
Did what happened to Jackie make us closer, more able to be our true selves together?
Not so much. Life pulled us back into our daily routines, which is what life does and which is, for the most part, a blessing. We don’t talk much, if ever, about those long months it took Jackie to die. We don’t talk much about Jackie, herself, when we’re together. When Jackie floats into my mind’s eye, it’s the sick, scared Jackie I see. She is the gatekeeper to my funny, freckled little sister; the carefree college girl with long, blond hippie hair; the capable bank vice president in her downtown office; the adoring mom on the bleachers rooting for her two beautiful boys. Sometimes it’s just too painful to confront the gatekeeper Jackie to reach the Jackie I want to remember.
Do others who loved her feel the same way? If so, does that explain our silence?
If I were going to write a memoir about my sister’s death, it would be the story of my family’s struggle to understand, respect, and accommodate the very different stories each of us imagined and set in motion the moment we learned Jackie was sick. How our efforts brought consolation and moments of grace, how they fell short, causing pain, regret, and occasionally, discord among us. And Jackie, at the center, terrified, no strong faith or habit of reflection to sustain her, watching us watch her die.
But I don’t feel I can tell the story of my family to anybody but myself.
And I can tell the story I’ve just told about my mother and myself only because she is no longer here. She died of pneumonia a little more than a year after Jackie’s death perhaps exhausted by grief, exhausted by her efforts to put on a brave face and carry on with her life. I was the one to whom the doctor said she could not survive the illness. Moments later, I told her she was going to be fine and watched her relax into the lie I knew she wanted me to tell.
Should I have told her the truth? Is it wrong not to let someone know her death is imminent? Might telling her have made some true moment of connection between us?
I have no idea. I couldn’t bring myself to do it, in any case.
I sat with her, held her hand, told her the stories she’d told over and over, the preferred narrative of her life: her adventures during The War; the four children she adored; the sweet, funny grandchildren and great-grandchildren. The move to Florida that had brought with it the end of my father’s drinking; her job as hostess at a country club, where everyone loved her, especially a young Down Syndrome man, who for no known reason, called her Miss Tilly.
Near the end, I said, “Look, Mom. Jackie’s there. Can you see her?”
The following summer, I’m up in Michigan, where I go to be alone, to write. I’ve been working since morning on a new novel, a world that has nothing to do with Jackie, and I need a break. So I take a walk. It’s been a good, productive day, and I’m happy walking on the forest path, listening to music on my iPod, my mind alive with images and ideas.
Then Eva Cassidy is singing “Over the Rainbow.”
Jackie loved the album this song was on and listened to it a lot when she was sick. We ended her memorial service with the song and—whoa! On that dirt road in Michigan, it all comes back to me. Everything. From that first phone call. Jackie saying in a strange, wondering voice, “Barb, I’m going to die,” to bringing a whole carload of funeral flowers home because I couldn’t bear to part with them. Then, upon seeing a single brown spot on a rose, stripping every petal of every flower and setting them to dry on cookie sheets on the pool table in the basement before I had to watch them die, too.
I’ve never cried, really cried, for Jackie. Now I burst into tears. I cry all the way down the hill toward home, listening to that song, missing my sister. I stand in the yard, crying, looking out at the meadow and the trees beyond, every imaginable color of green, feeling the sun and the breeze.
“Jackie,” I say out loud. “Where did you go?”
She doesn’t answer.
She still hasn’t. So I wrestle with memory, peering at bits of my reality and that of others as if through the lens of a microscope, combining and recombining, adding and subtracting, applying imagination to the mix, hoping to trick the story of my sister’s illness and death into a deeper, more satisfying truth than any set of facts could relay. Working with the words helps untangle the knot of grief inside me, it lightens the weight in my heart—and if I’m lucky, it will open a door in my mind through which I can pass without sadness to a place where Jackie waits, her own true self.
Maybe my mother will be there, too. Maybe she’ll say, “I see who you are now, I understand why you failed me in that terrible time.”
Forgiveness was never an issue. She forgave me. I always knew that.
But if I could believe that, finally, she knew me—I might be able to forgive myself.
Barbara Shoup is the author of eight novels for adults and young adults, most recently An American Tune and Looking for Jack Kerouac, as well as a memoir, A Commotion in Your Heart: Notes about Writing and Life. She is the co-author of Novel Ideas: Contemporary Authors Share the Creative Process and Story Matters. Recipient of the PEN Phyllis Reynolds Naylor Fellowship and grants from the Indiana Arts Commission, Shoup is the Writer-in-Residence at the Indiana Writers Center and a faculty member at Art Workshop International.
Photo credit: Tony Valainis, Indianapolis Monthly
Emily A. Davis is a photographer and writer residing in Chicago. She is currently finishing her Bachelor of Fine Arts at the School of the Art Institute of Chicago where she is a recipient of the SAIC Founders Scholarship. Davis’ work focuses on architecture and abstraction. She utilizes experimental techniques that distort and reframe the world around her. Emily has exhibited work in the Starline Gallery in Harvard, Illinois, and published poetry nationally.
Jada Bennett is a mixed-media artist with a focus on sculpture and illustration. She is studying at The School of the Art Institute of Chicago in the sculpture, print media, and fiber departments. Jada has been working as a freelance illustrator for 6+ years for comics, fashion, album covers, logos, and digital branding