The only place to sit in my mother-in-law’s room at Park Avenue Rehabilitation and Nursing Facility is on a wheelchair that belongs to her. I feel uncomfortable in her chair, so I perch on the edge of the cushioned black seat. My neck and shoulders ache with the kind of tension that pulls me forward into a slump. I am not happy to be here, but neither is Judith.
She lies in her propped-up hospital bed, her right arm moving slowly. She leans forward, reaches with her hand and lifts a piece of pecan pastry off of a roll-up table next to the bed. Slowly, she brings the sticky sweet to her mouth. Judith has made little eye contact since my husband, Jean-Paul, and I entered the room. We think the brain tumor has progressed. This sudden state of emotional absence, though hard to bear, is strangely better than the way things have been. At least Judith is not ignoring us out of anger and blame.
She was crazed just four days ago in a meeting with Park Avenue staff. She has been here since suffering a bad fall in her home several weeks ago; they won’t release her until conditions at the house are safe. “Traitor!” she yelled at Jean-Paul during the meeting. She was enraged at his admission that she could afford the home care required for her release. Medicare covers health-related necessities but not custodial care. Judith had claimed to be destitute, an outright lie, because she was determined not to pay for any services. “I worked all my life!” she screamed, referring to the thirty years she taught art in a public school near Boston. “Someone else should pay for all this!” She stared into space, swaying back and forth in her wheelchair, her eyes round and vacant. “You’re no longer my son,” she finally said. “You’re on your own, on your own.”
Sitting here now, I feel alone, too. I struggle with emotions that are jumbled in my head: compassion, despair, my own anger. This woman, who is both physically and mentally ill, has held us captive to her fate and her pain for a year and a half. She has called at all hours, made crazy demands, shrieked when things didn’t go her way. After weathering unreasonable rants for so long, I am suspicious at their absence from this room. Like a traumatized child, I wait for the storm.
Judith seems so calm and cooperative now. She lies in that bed, staring wide-eyed at a flat-screen TV that sits on a chest of drawers near the wall. Jean-Paul brought the TV from her house and set it up for her here in the room. Images flicker on it twenty-four hours a day.
Every Sunday for the past year, Judith has wanted pecan rolls from her favorite bakery. If we arrived at her house without the rolls, she turned her back on us and said, “I guess a pecan roll was too much to ask.” Now she is eating the roll we brought, slowly moving her arm up and down. She tells her son, in a slightly slurred voice, that it tastes “really good.” I glance at Jean-Paul and my throat tightens when I see the look on his face. My husband, forty-five, is smiling so broadly that deep wrinkles have formed near his mouth and his eyes. He glows with pleasure at his mother’s approval. For so long, nothing he has done has earned a whisper of thanks.
The tumor that paralyzed Judith at age sixty-eight will almost certainly soon take her life. I am surprised that the thought crosses my mind so objectively. When the tumor bled and caused swelling in the brain after the biopsy, it took away everything Judith loved about her life. She woke up to the worst possible news. The tumor was malignant, the surgeon could not remove it, and whatever time she had left would be spent badly disabled.
“To think,” she said later, still in shock from the news, “that I will never walk into the supermarket again, never reach down and feel the fresh apples.” Her right hand made a circular gesture and her fingers curled into arcs, as if she could still feel the apples’ smooth skin. Tears slid down her face.
Thoughts of apples and supermarkets are now long gone. I wonder if Judith even knows what she is watching on TV. Usually she tunes into the latest case on Court TV or endless reruns of Law and Order. Now she is staring, wide-eyed, at an infomercial about a vacuum cleaner. She seems to hang on every word.
I turn toward the screen and watch for a while. A gray-haired man in a business suit touts the benefits of the Shark Cordless VX3. A pretty woman with shoulder-length hair listens, smiling. The machine is lightweight. It has swivel steering and a cordless, “go-anywhere” design, the man says. “Notice how the folding ‘Backsaver’ handle makes it easy to clean under a table, or even under the bed! You could finally be free of those annoying power cords!”
I have noticed something about myself as I sit in this room, which smells strongly of urine and ammonia. I rarely look at Judith. I stare at the floor, at the chest of drawers or the sink, at the hand sanitizer and paper towel dispensers hanging on the wall. I do everything I can to avoid being present with what is happening here. Knowing this makes me feel guilty, but I sense that I am protecting myself. I don’t know how to handle the debilitated state of this once vibrant woman. I am afraid if I look at her and she looks back at me, she will see the fear of death in my eyes.
Judith has accused us of thinking her hideous, but it is she who thinks this is true. A slim, uncommon beauty all of her life, she hasn’t coped well with the changes in her body and face. Her left leg and arm lie motionless on the bed, and her right arm has lost muscle tone. Her abdomen swells oddly, and translucent skin hangs from her bones. Her sister once told me that when Judith was young, she refused to go to school if her hair wasn’t perfect. Now that same hair is oily and matted because the aides don’t wash it often enough. Dark roots show through blond hair dye that Judith applied for a while at home. Her cheeks are round like small melons, swollen from steroids. Without the bright-colored lipstick she wore everyday, her lips are pale and dry. Her brown eyes are wide open; they stare a little wildly.
Despite all this, Jean-Paul has never thought of his mother as hideous. She has never been anything to him but his mom. Even before she was ill she was difficult – kind but self-centered, intelligent but condescending, unusually creative but subtly controlling. Jean-Paul loved her through that, and he loves her through this. He didn’t comment when her hair fell out, or when it grew back in odd patches after chemotherapy and radiation. He didn’t care how she looked when her five-foot, nine-inch frame dropped to one-hundred-and-ten pounds. His only fear was that these were signs he was losing her, signs that the drugs weren’t working.
“So the pastry is good, Mom?” Jean-Paul asks again now, casting around for something to say, some way to continue connecting with her. Despite how painful every day has been since the diagnosis, he does not want to lose his mother. She continues to stare at the TV but nods, and I see satisfaction again on his face. He has pulled his chair closer, right next to her bed, and he leans in to wipe stray crumbs from her shirt.
Sitting safely apart in a corner of the room, I feel ashamed of my inability to participate. I am the woman who rescues stray cats, clears snow off the car in my elderly neighbors’ driveway. Why am I staying away now, doing nothing?
“Do you believe in an afterlife?” Judith once asked me before she got sick. “I don’t,” she said. “I think after this, we’re just nothing.”
I do believe in some form of God. Or maybe I just have hope. I wonder about the difference. Lately at night, when I wake up from bad dreams, I sit straight up and feel blind. I can’t see anything in the darkness around me and my heart beats fast with the fear of death. I gulp for air, but can’t seem to draw anything into my lungs. I try to calm down; I tell myself death is beyond my control. I can’t change it and can’t understand it. Fear rushes around my body like wind, and I do what I can to push through it. Sometimes I think about something very silly. What will happen on the soap opera I don’t admit to anyone that I still watch? If I could write the next scene, what would the main characters say? I lie back down, rest my head on the pillow, and close my eyes. I picture the actors speaking words I would put in their mouths. The handsome young man with the ragged brown hair tells the sweet young woman with blue eyes that he loves her. She smiles as tears roll down her cheeks. I comfort myself by directing the scene; I make it turn out any way I desire. I control everything on the stage of my mind, write endings I want, but never get.
Judith controls virtually nothing now. The last thing she held onto was the power to decide how her money was spent. Now, in her eyes, they have taken that, too.
I think I know the day it all changed, the day something inside me broke, or just froze. Judith was living at home in a wheelchair; her health had been stable for a time. The chemotherapy had been effective for a number of months and the tumor was not yet progressing. Jean-Paul and I were handling most of her needs—her shopping, her cleaning, her doctors’ appointments.
Judith called Jean-Paul in the middle of a workday and asked him to pick up a prescription at the pharmacy. She needed to take the medication at eight o’clock the next morning. Jean-Paul’s workplace is an hour from her house. He couldn’t leave work or get to the house that evening, but he promised to have the pills delivered by the pharmacy early the next day.
Judith slammed the phone down. She was furious that her son hadn’t come when she called. She wanted that medication, and she wanted it now. She picked up the phone again, and this time dialed me. I was working in my office at home. Sobbing into the receiver, Judith told me she was out of her medication and Jean-Paul wouldn’t help her. She didn’t mention that he had arranged for the pharmacy to deliver the pills.
Rain was pounding at the yard and the street outside my house. Judith’s Cambridge home was a half-hour drive away. It was nearing five o’clock, rush hour. Heavy traffic would be clogging the streets around Boston. I had a terrible headache; in fact, I’d had a headache twenty-four hours a day for six months. But I heard the panic and fear in Judith’s voice and I thought she was desperate. I couldn’t risk her missing important medication; I didn’t want to be responsible for endangering her health. I told her I’d come. She sobbed into the phone with relief, and told me, through tears, that she loved me.
I grabbed my raincoat and ran out to my car. I drove to her pharmacy through the heavy rain. Traffic was fierce; the trip took twice as long as it should have. I hit every red light between my house and Cambridge. The prescription was waiting when I got to the pharmacy; I paid for it and continued on to Judith’s house. When I pulled into the driveway the rain running down my windshield looked like the underside of a waterfall. I pushed open the car door and dashed to the front of the house, fumbled to open the lock with my spare key in the downpour. I almost fell through the doorway to get out of the rain.
I expected to find Judith desperate and tearful, thankful for the delivery of her life-saving meds. Instead, she was a few feet away from the front door, rolling her wheelchair calmly toward the kitchen. Her hair had been styled and blow-dried; her face was made up with fire-engine-red lipstick and heavy eye shadow. There was no evidence of tears, just a look of satisfaction that her wishes had been fulfilled. She barely glanced at the bag in my hand.
“So what do you think of this election?” she asked, referring to the presidential race between Senators John McCain and Barack Obama. I stood inside in her doorway, my head aching, rain dripping off my coat and forming small pools on the floor. Maybe I should have understood that all she needed was a sense of control. Maybe I should have considered the possibility that she was lonely and just wanted company. After all, this woman had been told she was dying. But for the first time since Judith was diagnosed with brain cancer, I felt completely enraged.
The dramatic change in Judith’s condition started just a couple of days ago. Last-ditch chemotherapy is making no difference; she is clearly getting worse. She can no longer get in and out of bed or maneuver her wheelchair at all. A half-sister, Joanne, has offered to come from Missouri to live in the house and help care for her.
Looking at Judith now, so placid, it is hard to believe she is the woman who has been ranting for the past eighteen months. It is even harder to remember the attractive, quirky woman she was before the brain tumor. I recall just a little from the short time I knew her and from what others have told me she was like. On holidays she cooked huge meals—turkey with stuffing, green bean casseroles from an old Campbell’s soup recipe, warm fresh bread and blueberry pie. She made her own jewelry—thick silver rings with precious stones glued in. She wore Ray Ban sunglasses and tight leather pants and loved shirts decorated with animal prints. Her paintings were abstract and colorful. Many of the paintings featured faces. Sometimes the faces stared out of a foreboding, dark gloom.
The infomercial is still on TV. “Look at that!” the woman exclaims as the Shark Cordless VX3 sucks dirt from a cream-white carpet. “It picks up dirt, and it even picks up glass!” The Shark rolls over a neat row of broken glass. When it pulls back, the glass is gone.
Jean-Paul pulls his chair closer to his mother’s bed. He leans over to retrieve more crumbs from Judith’s shirt. She does not appear to notice. He pats her arm tenderly, asks a third time if she liked the pecan roll. His face glows again when she nods slightly and says, “It tasted great.”
It occurs to me that for the past eighteen months all three of us have been afraid. Two of us have been angry. But only one of us has had the courage to hold on to love, no matter how much it hurts at the end.
Faye Rapoport DesPres holds an M.F.A. from Pine Manor College's Solstice Creative Writing Program. Her personal essays have appeared, or are upcoming, in Ascent, damselfly press, Eleven Eleven, the Hamilton Stone Review, International Gymnast Magazine, and Writer Advice. Her journalism has appeared in The New York Times, the Intermountain Jewish News, Trail and Timberline, and other publications. Faye lives in the Boston area with her husband, Jean-Paul DesPres, and their four cats.
Q: What was your inspiration for this piece?
A: I wrote this essay during my mother-in-law’s fierce, 22- month battle with brain cancer, a battle she lost in December, 2008. During that painful period in our lives, I grappled not only with conflicting feelings about her and myself, but with how to express what was happening to all of us.
Q: Why are you a writer?
A: To pay the bills, I have worked in public and media relations for environmental organizations, done copywriting, managed a music business, assisted the CEO of an Internet startup, and worked as a newspaper reporter. A few years ago, I told a friend of mine that I was working with a career counselor to figure out my next steps. This was my oldest friend, someone I’ve known since I was seven. She said, “That’s funny, because I can’t imagine you ever being anything but a writer.” After I hung up the phone, I realized she was right. Whether it pays the bills or not, a writer is what I am, and it’s what I’ve always been.
Q: What musical instrument are you?
A: The flute.
Q: What's your favorite part of the writing process?
A: The writing process is hard for me; it takes a lot out of me. But every now and then there is a moment when I catch my breath, when a certain shiver literally runs down my spine. Sometimes it happens when a sentence comes out JUST RIGHT. Sometimes the ending of a piece finally becomes clear to me, and everything suddenly makes sense. Or sometimes, after revising a draft repeatedly, the moment finally arrives when I feel that there is nothing left to change. I know it’s finally right. Those moments, when they come, are worth it all.
Q: What are you working on now?
A: I am working on a collection of personal essays.