After a lifetime of discord, my mother’s battle with ALS brought us closer together than ever, but waiting for her to die nearly drove me to a nervous breakdown.
I’m sitting on a wooden bench below an apartment block, chatting with my mother on my cell phone. We’re laughing about something when suddenly it hits me. “How come I’m talking to you?” I ask. “Aren’t you dead?” There’s a click and the call disconnects. Sometimes dreams articulate what we cannot.
I grew up in northern England in a house that bordered a copse. When we were little, my brother, Andrew, and I would play there after school. We spent hours in that copse, safely hidden among the trees, running through bracken that crackled under our feet. Returning home, I would see my mother standing at the kitchen window, making dinner and watching out for us as the sky darkened.
When I was fifteen, my father’s business collapsed, and things shifted. I got a Saturday job at a shoe store. My brother left his expensive high school and got a job. Life trundled on. When Andrew died in a motorcycle accident some months later, everything stopped. He was seventeen.
My brokenhearted parents decided there was nothing left for them in England, and resolved to make a fresh start by moving to Israel. Being Jewish was no big deal in my house, at least not for me, but after Andrew’s death my parents tapped deep into their Jewish roots. My mother was sure that in Israel she would receive empathy from a country plagued with bereavement from war.
My mother, a woman of strong resolve, made the odd decision to send me ahead of them and I was packed off to a boarding school in the Negev Desert. I was sixteen years old. In retrospect, I think this was even more damaging to me than the loss of my brother. After losing Andrew, why would she send me away? I needed security, the home I had lived in, the friends I went to school with, my aunts and uncles. Most of all, I needed my mother to watch out for me. It was as if she had sliced up what remained of the family, leaving her and my father on one side and me on the other.
In order to survive in a country I knew nothing about and where I knew no one, I blocked out everything that had come before until I could no longer remember it. By the time my parents arrived in Israel, some months later, it was too late. On weekends, I would hitchhike with school friends to the beach in Tel Aviv where we would buy drugs and get high. There was no going home for me, because there was no home left as I had known it.
We avoided talking about painful subjects, keeping our conversations to politics, clothes or the weather. On the few occasions when Andrew’s name was mentioned, there would be an uncomfortable pause. As time went by, the distance between my mother and me only deepened. I had a room in their house but felt like a guest. There was little physical contact. Kisses were reserved for holidays and I cannot recall ever receiving a hug from her willingly. I shrank from her touch. She would end every phone call to me with the same cheery words: “Love you.” I always wondered grimly where the “I” was.
* * *
I found stability some years later when I met Raz, a tall, smart guy who had not served in the Israeli army for conscientious reasons and who, in his way, did not fit in either. We raised three children, who became a fragile bridge between my mother and myself. I took consolation in the warm relationship that developed between both my parents and their grandchildren and did not begrudge it. In fact, I enjoyed watching my mother patiently teaching my youngest daughter how to knit, or reading “Winnie the Pooh” to them after school. Perhaps she did this with me, when I was a child, although I could not remember.
Then my mother began to fall inexplicably. Glasses of water and cups of tea slipped out of her fingers, shattering on the kitchen floor. She visited the family doctor, who sent her to one neurologist, and then another. Although they had stuck together in their own little unit for so long, this was too much for my parents to bear alone. They asked for my help, and one cold winter day my father and I dragged her out of bed and took her to a specialist in a Jerusalem hospital. By that time, she was floundering badly and would shuffle along from bed to bathroom.
My father parked the car outside the hospital gates. A guard yelled at us that we could not stop there and should park further away. “My mother can’t walk,” I muttered back at him defensively, without knowing that this would be the very last time my mother took a step.
The neurologist we met with that day left no room for doubt: my mother had ALS, otherwise known as Lou Gehrig’s disease.
I made a decision to do all I could to help her through to the end. This decision was based on my own selfish wish to know that I had done my best; that I was a good daughter after all. I wanted to be good. At the end of the day, I needed her approval.
The months went by. I stopped working, stepped back into what remained of my mother’s life and devoted myself to her. It felt like penance for all the time I’d spent pulling away from her. After a period of hospitalization, we arranged a full-time nurse, rented the medical equipment, and brought her home to die. Trapped inside a body that no longer obeyed her, my mother invested much of her time in anger and bitterness. She had always been quick to flare up; now she was furious at my father, who no longer understood her; furious at Michelle, the nurse, who she could hear laughing and talking with my father in the kitchen as they ate dinner.
She accepted my presence grudgingly. One time, as I sat by her bed fingering the gold watch that lay on the bedside table, she suddenly snapped at me. “Put it back,” she said. “You’re not having the watch, not yet.” I put the watch down and walked out of the room into the bathroom. I stood there for a few minutes, my head against the mirror, my eyes closed.
A delicate intimacy developed between us. We played Scrabble, a game she had always been good at. I wrote down the score on a piece of paper and she always won. When she could no longer move the letters with her hands, I moved them for her.
When she asked to dictate her memories of Andrew to me, I balked. Although I recognized her wish to repair the rift between us, I could not muster the emotional strength to accommodate her. We found a volunteer to do it for us, a gentle man from the United Kingdom, and he typed out five double-spaced pages, beginning with this:
I could not write even one word after Andrew’s death – until now – and only for you, my darling girl.
Finally, she was reaching out to me.
By that time it was October. My son, Daniel, would be thirteen in April, his bar mitzvah year. As my mother deteriorated, I became fearful she would not make it. After so many years of getting by without her, I needed her. I consulted the rabbi at my father’s synagogue and she agreed we would have the bar mitzvah early. When I told my mother, she was livid.
“You’re trying to get rid of me,” she accused, her speech slurred and heavy.
“No,” I said, shaking my head emphatically. “We’re a family and you’re part of it. We want you to be with us.”
She held on through the beginning of December, as the trees outside the window continued to shed leaves and frost appeared on the windows in early morning.
As muscle after muscle in her body closed down, my mother articulated her wish to be done with it all. She had already signed a living will, requesting that her life not be prolonged by artificial means. Then, one night, my mother asked the home hospice physician why she could not die. He told her quietly that she was still there because she had something to say and that she should think what that might be. In retrospect, I think it was to give me time, as well, to work out what I wanted to say to her. Soon after my mother lost her ability to speak, but her eyes would follow me around the room as I straightened the sheets on her bed, adjusted the pillow, brought her glasses of sweet tea she could no longer drink, opened the curtains so she could see outside. I felt sorry for her.
Three weeks before the bar mitzvah, I realized I was reaching a breaking point. I had changed the sheets on the bed of the guest room in our house countless times for visiting relatives. I had entertained, had encouraged everyone to keep going. I felt as if I could not keep going any longer. I made an appointment to see the family doctor, cancelled, then made another appointment. By the time I entered the doctor’s room, I was crying so hard I couldn’t explain what I wanted. I don’t think I even knew. There was no time to talk things over with anyone, no time to sort out my own messy feelings about my mother’s approaching death.
The doctor handed me a Kleenex, and waited. He prescribed Xanax and told me that I needn’t have waited so long to come to him. I felt defeated but at the same time experienced an enormous sense of relief.
Just days before the bar mitzvah, my mother developed an infection and I was afraid she would die, that I had tried to cheat God by playing with the dates. She was put on a heavy dose of antibiotics. I sat by her bed that whole week. I read her the menu for the lunch we were having after the ceremony in synagogue. She could no longer speak or move any part of her body, but I would ask her: Pumpkin or mushroom soup? Quiche or stuffed vegetables? If she blinked, it meant yes; if she looked away, it meant no.
We chose the outfit she would wear to synagogue. My mother had been a sharp dresser and took great care of her clothes, ironing them meticulously. I opened the closet, ran my hands over the neatly-hung dresses, skirts and suits she no longer wore. I pulled out clothes and held them out to her, waiting for her to react. We settled on a long knitted skirt in brown and cream and a matching cardigan. It would be cold outside and I would be pushing her in her massive wheelchair for the five-minute walk from our house to the synagogue.
The morning of the bar mitzvah, I went to welcome everyone. People came up to me expectantly. “Mazal tov,” they said, and it felt whacky to hear this through the Xanax. A celebration, indeed, because my mother was still alive.
As the service began, I doubled back to the house to collect my mother. Michelle was in the finishing stages of dressing her. We lifted her into the wheelchair and applied makeup to her pale face. I stepped back to admire our handiwork. “You look beautiful,” I said, and I meant it. Finally I added a little woolen hat to her head so she would not be cold on the walk, pulling it down over her ears as if she were a child. Just before we entered the hall, I removed the hat from her head and ran my fingers through her baby-soft hair, smoothing it down. “You can do this,” I said, more to myself than to her.
When I pushed her into the hall, a stunned pause rippled through the congregation. I heard a sob from one of the front rows. We had made it.
We’re not religious, but when Daniel stood there and sang in a loud, clear voice, Raz and I standing on either side of him, my mother and father and my two daughters close to me, I knew we had made it. We were together, one last time.
Another week passed. We spent Friday night at my parents’ house. I was too tired to cook. Michelle made a pineapple chicken casserole, which we pushed around our plates. We took turns leaving the dinner table to sit with my mother in her bedroom. Toward the end of the evening, I called the children in one by one to say goodnight to my mother, who was laying in her bed. Her hands rested on the cover, stiff and waxy. Her face was clammy. Daniel came in last. He leaned over my mother and kissed her forehead. “It’s O.K.,” he smiled. “You don’t have to talk, I already know what you want to say.” She looked at him and there was a faint glint in her eyes. “You want to say you love me,” he smiled. “But I already know that, so you just lie back,” he said, uttering the very words I could not say.
* * *
Exactly one week after the bar mitzvah, on a sunny Saturday morning, my father called me in a panic. She was choking.
There was meat on the kitchen counter in a plastic tray, defrosting for a barbeque we’d planned. I left it there and hurried to my mother. On the way, I called the home hospice doctor and begged him to meet me at my parents’ house. The doctor and I arrived together. He went in to see my mother briefly, then exited her room and called my father and me into the living room. We did not sit down.
“This is it,” the doctor said. My mother, he explained, was drowning in her own fluids. “You can either intubate or you can let her go,” he concluded. My father just stood there.
It was up to me to speak for my mother and it was the easiest thing I have ever done: “Let her go,” I said flatly.
The doctor said we should go into the room and say goodbye. Once he had administered the sedatives she would not know we were there. I walked in, put my face close to hers, breathed in her clamminess, and told her the only words I had to say. “All is forgiven between us,” I said, wondering if I really meant it but wanting her to believe I did. I leaned even closer to her and she opened her eyes a little because she knew I had something else to say, after all. “Andrew is waiting for you,” I whispered, as if I was afraid someone else was listening. “Go, go to him.”
Before the doctor left, he gave us strict instructions. It would take between hours and days for her to die but we should wait an extra half hour before calling the ambulance service. We should not say she’s dead; we should say we think she isn’t breathing. This was to avoid any question of foul play. In fact, it took less than an hour for my mother to slip away. I had left the room for a few moments to stand on the balcony, wondering whether the meat had finished defrosting on the kitchen counter back home. I looked out at the road below my parents’ apartment block. Two children were playing ball in the street, and an empty bag of potato chips lifted sharply in the wind and dropped back down again.
Michelle called me back into the room. “I think she’s gone,” she said softly, “but I’m not sure.” I placed my head on my mother’s chest. She felt warm. Michelle did the same and then we laughed and I had another go. How can you tell when someone who hasn’t moved for months is dead? We waited half an hour; we called her name, stroked her hands and her hair. Then I went back out onto the balcony. The children who had been playing ball were gone. I called the ambulance and my voice shook. Then I called Raz and could only say his name, again and again.
* * *
Joanna Chen’s poetry, essays and literary translations have been published most recently in Guernica, Asymptote and Poetry International. She is author of “The View From Here” in The Los Angeles Review of Books. Find her on Twitter.