By Patricia J. English-Schneider
Cancer is a mean disease. Watching a loved one suffer the pain of this disease was an experience that altered every single aspect of what I assumed to be true about life and death. My mother was diagnosed with cancer on July 29th, 2009 when a large tumor was discovered in her ureter just outside of her right kidney. She died almost exactly one year later on July 30th, 2010. Everyone in the family assumed the cancer was treatable. No one knew that her diagnosis was stage 4 bladder cancer. She kept that part of the story to herself. I was my mother’s primary caretaker over the year that she tried every treatment available to her.
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In her memoir, The Year of Magical Thinking, Joan Didion (2005), recognized the inevitability of death as her husband was dying. He began giving things to her. She described a time when he said something to her and then told her that she could keep the phrase and use it after he died. My mother also gave me things. Some of them I cherished her sense of humor and her easy way of adapting to life’s ups and downs. Other things, I resented like my sensitivity and my inability to let go of what other’s expectations of me. In grief, I take them all equally just to feel connected to her.
Judith Butler (2006) in her book, Precarious Life, describes the impact the loss of another has on us. She states, “Let’s face it. We’re undone by each other. And if we’re not, we’re missing something” (pg. 23). I like to remember the self who I was when I spent time with my mother. Without her, I am incomplete. My grief story is incomplete as it continues to go on. In the midst of this pandemic when the world seems so unstable and the future so unclear, I use the private rituals I created to nurture and keep my mother alive. I often wonder as I engage and maintain these rituals what my mother would think of what is going on with COVID-19 and how she would have coped with it. I imagine her telling stories about her own grandmother who died of the Spanish Flu in 1918 leaving her only daughter at four years old to fend for herself with eight brothers and a distant father.
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I was visiting my mother at her home in Minneapolis for a weekend in July 2009 when she complained of pain in her lower back. She was popping extra-strength Tylenol every six hours to help alleviate the pain. On Saturday, we golfed and went shopping and she seemed okay as long as she took the medication exactly every six hours. We returned home after a long day and went to bed early. I woke up in the middle of the night to the sound of my mother‘s moaning. I went into her bedroom to find her rolling around on the floor crying in pain. She told me to get a bucket from the bathroom. I returned with the bucket and she began to vomit. I grabbed my phone to dial 911 when the pain suddenly stopped. She looked at me surprised and said, “That’s funny, the backache disappeared”. She was able to get up off of the floor and sat down on her bed. “we are going to the ER” I said. She was hesitant but reluctantly agreed after I told her that the pain would eventually return.
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Yeong (2005) describes rituals as standardized modes of behavior that provide relief from the sense of uncertainty that emerges after a traumatic loss. Clifford Geertz (1973) points out that rituals can reveal the tensions that exist between cultural sanctioned practices and the actual activities that individuals engage in. The public ritual of a funeral is an acceptable practice in the United States and, to me, always seemed to mark the end of when someone should be distraught over the loss of a loved one. In actual practice, bereavement rituals go on privately as the grieving process extends long beyond the funeral. This has never been more true than now since the COVID-19 quarantine has been in place. I use the private rituals I created to give order to the chaos surrounding me. It is the performance of these rituals that accomplish and maintain a connection with my mother that I cannot bear to lose.
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Once in the ER, the pain came rushing in again. The ER nurse gave her a shot of morphine and she was off for testing. The hospital waiting room was relatively empty at 2:00 in the morning so I laid down on one of the couches and started organizing my thoughts. What could possibly be wrong with my mother? At 67, she was healthy, active, and excited about life after retiring a few months earlier. My mother and I were very close and very much alike. Since moving to Minnesota in 2001, I spent almost all of my weekends with her. My mother was luminous but could get tight in the eyes of grief. She experienced a lot of loss in her life. She lost a husband to divorce and a sister, lover, and 2nd husband to cancer. I think my mother appeared to be vulnerable but she had a high tolerance for all kinds of pain and, to me, she seemed invincible. Lost in my thoughts, I fell asleep.
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Vale-Taylor (2009) describes a private ritual as a way to keep a bond with the deceased loved one. Private rituals are a way for the deceased to find a place in the daily lives of bereaved people. While public rituals can be highly generic and cultural, private rituals are highly individualistic and dynamic. I engage in the same rituals now than when my mother first died but they have changed in terms of how often I perform them.
According to Gerry Philipsen (1997), a particular type of ritual, the totemizing ritual, “is a structured sequence of actions the correct performance of which pays explicit homage to a sacred object of a group or culture” (pg. 144). Motherhood is sacred and the actions I take to keep her close are repetitive and I do them in the same order. In the beginning, the pain of my grief was so strong that I performed these private rituals almost daily. Although these actions have changed over the ten years my mother has been gone, I still engage them on special occasions like birthdays or the anniversary of the day she died.
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A nurse woke me up at 5:00 a.m. to tell me that I could go see my mother. When I entered her room she said, “I have something to tell you. It is cancer. I have cancer.” I was stunned. How could this be? How could the love of my life, my person get cancer? The oncologist, a sturdy and rigid woman in her 50’s, came in to talk with us about the next step. As always, there was a cocktail for this type of cancer and the first ingredient was chemotherapy. Because I was the only child living in Minnesota near my mother and I was on a sabbatical from my teaching position, I became her primary caretaker. So it began, the new normal as they say. We developed a routine right away. The world became very small. Our days were filled with appointments, trips to the grocery store, and sitting together talking. My mother began to share with me things about her life that I never knew-an affair, childhood trauma, and other events that were significant to her. Looking back, I wondered why she was sharing her secrets, but now I realize that she knew something that I did not. That is, stage 4 cancer=death.
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Performing private rituals now is different than it was in the beginning. As our country mourns the loss of life from COVID-19, I do still practice a few of these rituals to keep my mother’s memory alive when all else is in chaos. The private grief rituals that I still practice include:
- Wearing her clothes. I wear one of my favorite t-shirts on her birthday and the anniversary of her death. I kept many pairs of her beautiful shoes and sometimes wear them even though they don’t fit properly. I just don’t have it in me to get rid of them. There is something about my mother’s shoes. They represent the agency and being alive.
- Focused remembering. I designate certain times when I am alone (so I don’t embarrass myself and others with too much emotional display and I am able to cry freely) to talk with her and remember her physical form. Her face is becoming less vivid, but I will always remember the detail of her hands. They are identical to mine. I think about specific memories (not her death) of us together like the cross-country road trips and funny moments. These moments can blow me over so I have to really be prepared to sink into her memory.
- Listen to the audio I recorded of her about a week before she died. On it, she talks about memories of childhood-playing with her sisters outside in the dirt on the farm or memories of her mother putting rubber hot water bags under her covers at night to keep her feet warm. My mother’s family was very poor and they had only a wood-burning stove to heat their house in the winter.
- Reread letters and cards she sent. A person’s handwriting is their signature. My mother’s was neat and slanted in a unique way. She had beautiful handwriting. My mother was left-handed and she told me of how the teacher in her one-room rural schoolhouse took the time to teach her how to write correctly.
- Sometimes I lay in my bed and wait for my mother to join me. A few times, I have felt an indentation in my bed as if my mother is sitting next to me. Before my mother died, she told me that she would come back to me through the water. I am still waiting for that sign.
- On her birthday and the anniversary of her death, I watch her favorite two films, Walk the Line the story of Johnny Cash and June Carter and I’m Your Man a documentary about Leonard Cohen that includes performances by musicians influenced by him. She made me watch both films over and over again as they were her favorites.
I do not look at pictures, post images of her online or call a family member to reminisce about her. I don’t know why I don’t do these things. They are simply not my way of grieving and I am not interested in them.
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While my mother’s body was rearranging itself from the chemotherapy my body was turning inside out with anticipatory grief. I didn’t realize it at the time, but I think it was the beginning of my processing the loss of my mother. The chemical and surgical interventions meant to cure the cancer were making my mother’s suffering worse than the very disease that was killing her. The treatment recipe wasn’t working. I was made aware of this when my mother called me in March of 2010 to tell me that she was terminating her treatment. I was on my way to a Fleetwood Mac concert with a friend of mine when her call came in. My mother had undergone months of chemotherapy, an unsuccessful surgery, and now was in the middle of radiation when the treatment burned her bowl. This was the final straw for her. I asked her, “who else have you told about your decision?”. I wanted to be prepared for the frantic phone calls from my siblings. My mother replied, “Well, I know and God knows and now you know”. Something inside me shifted. I knew at that moment my mother would not survive.
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During this downtime, when COVID-19 seems to consume us with fear, I have had the space to reflect on my loss and how grief has impacted me. Here are a few things that I have learned about grieving:
- Grief is physical. I still long for my mother. The pain is less acute but it is still there. It comes in the form of a deep aching. Didion and Lewis both refer to the “tightness in the throat and the need for sighing” when we are grieving. The physicality of grief comes unexpectedly. Didion (2005) states, “Grief comes in waves, sudden apprehensions that weaken the knees and blind the eyes” (p. ). Grief seemed to impact my sight. Things were blurry for a long time and aspects of my physical self were unrecognizable to me for a while. For example, I couldn’t make out the detail of my own hands. Butler (2004) recognizes this loss of the self that occurs in grief. She states, “If I lose you, under these conditions, then I do not mourn the loss, but I become inscrutable to myself. Who “am” I without you?” (p. 22). The private rituals I continue to perform create a physical connection to my mother and, in turn, help me to see myself more clearly.
- Grief is temporal. I used to hate it when people told me that time will help me heal but it is true. My body has shifted. Life is just different now. Grief, for me, didn’t just stop at a certain point. It didn’t just come to a specific end after a period of time. Helen Vozenilek (1992) points out in her book, Loss of the Ground-Note, “I myself have often longed for some structure and theory that would compartmentalize or chart my pain. There is no single story or timetable or passageway through sorrow” (p. 8). Grief is dynamic and processual. I believe that the dynamic nature of grief is clear in how I reframe my mother from a saint, with perfect qualities, to an imperfect woman carrying an unfathomable loss of her own. This reframing demonstrates the complicated nature of our relationship throughout my life and allows my mother to be a human-being who faced her illness and death by talking about it with me. Our conversations were not always deep and complex, but they offered us both a chance to process our experience as it was happening to us.
- Grieving can take occur before someone actually dies. Anticipatory grief dominated my waking hours as my mother went through the dying process. I felt guilty for thinking about myself when my mother was sick. C.S. Lewis (1961) notes in A Grief Observed the selfishness of the living. After his wife dies, he asks himself what kind of lover he could be that all he thinks about is his own suffering and loss. My thoughts, too, were limited to my own desire for connection with my mother. This desire occupied all of my time. Initially, performing daily rituals gave me the structure I needed and it helped to fill the void of time left behind after my mother died and I no longer was needed as her caretaker. Rereading her cards and letters, mulling over her handwriting or listening to her voicemail message over and over again filled the hole inside of me with deep longing for her.
- Grief is individual. My twin sister posts pictures of my mother on social media on special days like my mother’s birthday or the anniversary of her death. It used to drive me crazy when my sister did those things. I felt her grief was palatable and too much out there for others to see, but now I understand that her needs are different than mine. She needs public support whereas I need more privacy. Even 10 years after my mother’s death, I still don’t talk with my sister about it much. Her pain is almost too much for me to take and I feel unable to do anything about it for her.
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During the last month of my mother’s life, we sat together often in silence. The day before she died, we were resting in the quiet when she turned to me and said, “I want my mommy.” I was shattered. Not knowing how to respond, I began to sob. My mother looked at me and said, “But you’re my mommy now.”
The loss of my mother to cancer still sometimes consumes me. I am full of an emptiness that I can’t seem to let go of. Cancer stole my ground-note. My mother told me that she was certain that she would get a new body when she died. A body, that she said I may not see, but I will feel. She was right, she moves behind me.
As I said, cancer is cruel, but it made me recognize my own mortality and brought me to the edge of human experience. To watch the dying is a gift that taught me that there is nothing essential besides loving and being loved and that love doesn’t just disappear when someone dies. It exists in a place where I can be with my mother anytime. It is a space of peace and grace.
REFERENCES
Butler, J. (2006). Precarious Life: The powers of mourning and violence. New York: Verso.
Didion, J. ( 2005). The Year of Magical Thinking. New York: Vintage International.
Lewis, C.S. ( 1961). A Grief Observed. New York: Harper & Row.
Philipsen, G. (1997). “A Theory of Speech Codes”. In Philipsen, G. and Albrecht, T. (Eds.), Developing Communication Theories (pp. 119-156). New York: State University of New York Press.
Vale-Taylor, P. (2009). “We will remember them”: A mixed-method study to explore which post-funeral remembrance activities are most significant and important to bereaved people living with loss, and why those particular activities are chosen. Palliative Medicine, 23: 537-544.
Vozenilek, H. (1992). Loss of the Groundnote: Women writing about the loss of their mothers. San Diego: Clothespin Fever Press.
Yeong, U. (2005). Grief Revisited. Annals Academy of Medicine, 34: 352-355.
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