Misery Loves Company
June 15, 2008
I was recently asked to join Andrea Aksowitz, Jane Ganahl, Wendy Merrill and Kathi Kamen Goldmark in a reading at Book Passage, one of the truly great independent bookstores not just in Northern California but the world. The theme of the reading was "Misery Loves Company," in honor of Andrea's recent book: My Miserable, Lonely Lesbian Pregnancy, which she is touring right now.
For my piece, I chose a selection from the memoir I'm working on concerning my late wife's illness and death, our marriage, the grieving process and life after you lose the most precious thing in your life. The particular section I read from concerns the day I had to tell Terri, my late wife, despite her dementia from her treatment, that her cancer treatment had failed, and she was going to die. (It was also the only day in our marriage that she played the piano for me.)
* * * * *
Riding the Piano
It was sometime after midnight. Except for the symmetrically spaced pools of light down the hospital corridor, the glow from the nurse's station, or the occasional lamp from within a patient's room, all was dark. The stillness felt charged, as though the disease to which the ward was dedicated, cancer, was a kind of cellular insomnia.
I felt a conflicted need to explain to Terri what I had done and whycutting off nutrition and treatment, with the understanding she would now hopefully, peaceably die. Even though she was sleeping as I returned from my most recent bout of wandering the halls, I still wanted to make the effort to explain myself, even if she could not hear meor understand me, given her increasingly confused state from the exorbitant level of pain medication coursing through her body. Her dementia had become so persistent and strangely childlike, with occasional dark glimmers of paranoia, that it seemed she understood little if anything of what was happening, or even where she was.
I told the sitter she could take a break, then pulled up a chair beside the bed. When I touched Terri's hand, she woke up. Confronted with her gaze, I felt unable to muster the nerve to say what I had intended. So I said merely, "Don't ever forget how much I love you." She let me take her hand, press it to my cheek. "You're the one true thing in my life." She stared at me drowsily, withdrew her hand, and fell back to sleep.
Her sleep would prove fitful. As the early hours of morning dragged on, she grew agitated. From 3:00 to 5:00 she was constantly moving, telling me over and over that she wanted to go homeshe'd been confined to this ward of the Stanford Medical Center for nearly a month. I believed that on some level she knew I'd made the decision that would kill hershe'd always been astutely intuitive, even in illnessand she was fighting back, even though the battle was confined to restless walks down the dark, still, empty corridors.
Once, looking down a vacant hallway, she whispered, "Oh, I get it now," as though she had finally deciphered some clue that had been agonizing her for daysabout what this place was, why she was confined to it.
On another occasion, seeing we were headed back into her room, she stopped in the doorway and refused to go in, saying, "No, DavidI hate this movie." Finally, Peng, the on-duty nurse, wanted to give her some Fentanyl for the pain, Ativan for the agitation. Terri grew mildly belligerent, sitting on the edge of the bed, refusing the needle. This was unusualdespite the daily agony of searching for a vein, and the insertion of a gastric tube through her nose and down her throat to drain away her bile, Terri was typically the gentlest, most cooperative patient imaginable. But now she was defiant. No amount of persuasion satisfied her. And so Peng was obliged to call in a male nurse, Arturothe Panamanian heavy, gentle as a rabbit but built like a middleweight. Peng explained darkly that she needed to administer Terri's medication and would have to restrain her if need be.
I knew I couldn't stay in the room and watch Arturo pin Terri down. I knew I couldn't leave, either. So I asked if I could make one last effort to talk with her. Peng agreed. She stood behind me, Arturo loomed in the doorway. I knelt down in front of Terri, took her hands, and told her we weren't going to hurt her. The medications were the same ones she'd been getting all along, I said. I sensed she was afraid we were going to give her something to harm her, even kill her, but I assured her that wasn't happening.
"I won't hurt you," I said, "and I won't let anyone else hurt you. That's a promise, and I'll never break a promise to you."
Given the decision I had made only hours before, this seemed the most cynical, manipulative lie. But Terri agreed finally to the shot. As I got up, Peng moved in, gave Terri the Fentanyl and Ativan. A short while later, she fell asleep.
I resumed wandering the halls alone as Terri slept. I lost track of the hourthe ward had no windows, and so seemed to exist in a timeless nowhere. I hadn't slept in days, and couldn't lie still.
The nurses greeted me with warm concern, sad smiles. Word had spread. Terri had been a patient here since three weeks before Christmas; it was now a week past New Year's. These people were practically family. And they were stepping up, comforting me as best they could, knowing better than anyone what I was facing. Alice, secretly our favorite among the nurses, told me she could tell Terri's body was shutting down. She expressed no interest in food, no hunger or thirst. She had no feeling in her legs or feet.
Paula, another nurse, said the last time she'd been on the ward, Terri had told her how much she loved me, and how worried she was that I'd be lonely. A third nurse, Diane, made a point to ask how I was doing as I wandered past. I told her I was afraid Terri was going to die hating me for what I had done. "She doesn't understand it logically," I said, "but I can tell she senses it, rejects it, wants me to take her home. Wants to live." I broke down as these last words came out. Diane held me, saying, "You did the right thing. What choice do you have, really?"
And finally there was Dr. Cho, as always chewing her lip, tiny hands stuffed into the pockets of her lab coat, which dwarfed her. Terri had thought of her as a kind of younger sister andthis was so typical of Terriworried about her feeling badly if she couldn't produce a cure. Dr. Cho took me aside, asked how I was doing. I mumbled something, and then she asked: "Who will you eat dinner with?" Realizing it had come out somewhat stark, she followed up quickly with, "I mean, do you and Terri have children?"
I smiled, said no. I'd be eating alone, unless one counted the dogs. I saw the sad repercussion in her eyes. No family. No shared meal. No comfort of the kind she understood, the kind that would ease the loss and loneliness if she were in my place.
Sometime before breakfast, Terri woke again, and insisted on another walk. Because her balance had worsened noticeably overnight, she almost fell after only a few steps, and so I found a wheelchair and helped her into it. As we passed the visitor's room, she glanced in and saw the upright piano against the wall. We must have passed this room dozens of times each day over the past month. This was the first time, however, she wanted me to stop. "I want to ride the piano," she said.
It was early, no one else was there. I guided the wheelchair into the room, she climbed out, settled down on the piano bench, and lay her hands gently across the keys.
As a teenager, Terri had studied for the Tchaikovsky Competition. She ultimately gave up performing classical music because, she said, "I felt like a trained monkey." She wanted to learn blues, boogie-woogie. We never had a piano, but I'd bought her an electronic keyboard one Christmas with earphones so she could practice privately. By then, however, over twenty years of working first as a piece rate seamstress, then as a lawyer, had created a case of carpal tunnel syndrome so severe and painful it was all she could do to get through a day of drafting pleadings.
In all the years we'd been together, she had never played for me. It was one of those bargains you make in a marriage, sometimes without a word, sometimes without even meaning to. I'd gathered over time that she'd lost interest in playing, even looked back on the years of her study with some disdain. And since she was not only one of the kindest and most honest people I have ever known, but also one of the most stubborn, I knew that if I pushed, pressed her, it would only guarantee that I would never hear her at all. And secretly, I suppose, I'd hoped someday she might relent.
The upright was old, in need of tuning. Her touch was tentative on the keys, almost ghostly in its gentleness, her long-fingered hands wandering vaguely over disjointed chords, picking out a melody I barely heard, and didn't recognize. Perhaps, given the state of her mind, she couldn't recognize it either. Or maybe she was searching out a phrase, a cadence, a chord change that lay just outside memory's reach. Regardless, after about a minute she stopped, returned her hands to her lap and looked up at me with an expression that seemed tired, lost and wounded.
"Thank you," she whispered.
* * * * *
After breakfast, I spoke with Terri's best friend, Marcie, by phone. I told her what I was going through, having to make such a thankless decision alone. She said I had to talk to Terri, tell her what I'd done and why, even if she didn't understand me. I would never forgive myself if I let someone else break that news.
I returned to the room, asked the sitter to give me a minute alone. Once the door was shut, I pulled a chair up close to the bed, took Terri's hand. "I love you so much," I said, speaking slowly, to be sure she understood. "I always have. I always will. But the cancer won. The doctors say we don't have a shot. All that's going to happen is you're going to fall apart little by little. It's already happening. I don't want you to suffer. I'm sorry, baby, I've tried everything and you've fought so hard, as hard as anyone could, but we lost. Please please please know I love you."
She didn't say anything, just lay there on her side, eyes shadowed, reflective, but open wide and vaguely anxious.
I asked if she was mad at me. She shook her head no. Then she struggled to get upshe wanted out of bed. On her feet, she staggered to the bathroom, opened the door, but just looked in. As though hoping to find a way out. After a moment, she closed the door, turned back to the room, and said in a plaintive whisper, "Baboo." This was her term of endearment for me, and mine for her. I didn't know it at the time, but this would be the last thing she ever said out loud to me. She stumbled back to bed, crawled in and lay down, looking distressed, uncomfortable. I asked if she was in pain. She nodded yes. "It's important now for you to be honest with me about that," I said. I knew her dread of narcotics, her fear they would numb her will to fight, to live. "You haven't been telling us the truth about how much pain you're in, have you?"
She shook her head notightly, quickly, like a child.
"I'll get the nurse."
Alice came in with a Fentanyl booster, and soon Terri fell back to sleep. As I sat there keeping vigil, I wrote in my journal: You don't just marry someone. You build an imaginary future, you share it. You construct a habit of thought and a ceremony of manners that defines who you arealone, together, out in the world.
A way of living. And now a way of dying.
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