SEE YOU MONDAY | Nancy Rappaport

At the start of the year Sue called me for an appointment, telling me she had “aggressive cancer” and wanted support. The first time I saw her, she was waiting for the results of a CT scan to see if the cancer had grown back. By the second visit, we knew it had. From the beginning, she was in charge. As Atul Gawande outlines in his book Being Mortal, mortality is something we all struggle to acknowledge, something on the horizon and not for tomorrow.

 As a child psychiatrist, working with a patient confronting this struggle was a different challenge for me, but I drew from the toolbox I had. D.W. Winnicott, a beloved psychoanalyst from England, championed the “squiggle game” – a way for a therapist to communicate with a young child by creating drawings together, through which the unconscious drive to be seen emerges. In a mysterious way, the spontaneity and creativity of the exercise becomes a dance towards understanding.

A similar exercise using metaphors in poetry would allow us to explore her impending death. When she began another round of chemotherapy, I began sending her a poem before our appointment each week. Good poets strike a delicate balance between words that comfort and words of grief – their precise, nuanced language brings us to access emotions that are hard to tolerate. The tenor of the poems I shared changed as the disease spread through her body, relentlessly claiming territory. 

 Our second visit was right before her birthday as she restarted chemotherapy. I sent her John O’Donohue’s poem “Beannacht” (Blessing), which talks about being comforted, as if by an invisible cloak, when the world’s “weight deadens on your shoulder.” I told her, “Poetry may compete with playing Angry Birds,” as she had taken up the “addictive” game to distract her from the harsh reality of restarting treatment.  

 I shared more poems that spring, including Galway Kinnell’s “Wait,” which he wrote for a student who was suicidal, beginning with, “Wait for now. / Distrust everything if you have to.” I said to her “It is so hard to wait when you don’t know when or if you will feel better” and gave her a packet of nasturtium seeds from the Isabella Stewart Gardner museum’s annual celebration of spring. She replied that she was “feeling better each day,” “memories of bad days were receding,” and she had planted the seeds.

 Sue needed a break, but the setbacks were relentless. First, she lost her uterus. Then the tumors did not respond to the liquid poison of chemotherapy that tried to expunge the curse. She kept bargaining for more time as the insidious growth recurred, the way we do when we don’t want to be sidelined. Celebrating attending her son’s wedding, she wore a one-of-a-kind flapper dress with sequins. She took a trip to Yellowstone to see bears and worried about tourists who seemed oblivious to the rules of respecting these beasts.

 Four months later, as summer arrived, she sent me a picture of green growth with a note: “These are from the seeds you sent me!” Our unspoken rule was to delicately walk around the idea that the disease was getting the best of her. Our time together was where she allowed herself to “vent her feelings” at her compromised position.

 Sue wanted to hike the woods at the end of that summer, but by then she was too frail to take on a big excursion. Instead, she settled on a RV trip, and she and her husband prepared carefully and drove to a river in Vermont to watch as the seasons changed. He fished and she read next to the RV and listened to the song of the river. I gave her the poem “What Can I Say” by Mary Oliver, and she told me she liked the first stanza: “Inside the river there is an unfinishable story and you are somewhere in it / and it will never end until all ends.”

As she got weaker, walking up the stairs to my office became an act of determination. She became more forgetful, leaving the keys to her car in my office when she left and apologizing profusely. She was guarded when speaking about the indignities of her condition, such as the stoma that collected her feces after she had some of her intestine yanked out – a last-ditch effort to give her more time. It made her nauseous to clean the stoma, but she thought it was private information no one needed to know. I urged her to allow a nurse to help with some of the logistics of staying alive so she could rest, but hospice and palliative care represented the “endgame” to her.

 She rarely missed an appointment with me – once because of a bowel obstruction, once to die. As autumn arrived, we both knew she was, in her words “falling apart health-wise,” but our job was to hold onto the dignity of her allowing in what she needed to know and finding a way to be present, without being overwhelmed. Sue told me, “We will see if there’s hope. I think there is little. I’m fighting anxiety and a lot of fear.” Sue’s palliative care doctor worried she wasn’t “integrating” her imminent death. She asked to see Sue more often, but Sue wanted to stay as far away from the hospital as possible. I did my best to help Sue communicate what she needed to the rest of the medical team. I was not schooled in the business of dying and maybe that was my appeal – I was not an expert. She had prioritized seeing me, and I was honored.  

 The last poem I shared with Sue I actually found when I had a health scare myself. At a goodbye dinner for my son, who was leaving town, I started to have flashes of light in my right eye – mini firework sparkles. I went to the ophthalmologist to make sure I didn’t have a detached retina. The receptionist had the poem “In and Out of Time” by Maya Angelou tacked onto a bulletin board, which I shared with Sue – “We see in the distance our long way home.”

 Our next meeting was tough. I was once again pressuring Sue to accept more help. She resented needing help to cross the street and didn’t like when people would warn her a car was coming, as if she couldn’t see. When she struggled to zip her coat, ten people would jump up to try to assist her, but she just needed the time to get it done. She showed me a picture of a perfect pre-Thanksgiving celebration she had with her family, leaves and gold trimming on an orange tablecloth. When she stood up to leave, it took her longer than usual to gather her things. I laughed with her that there was no way I would offer to help her. That night I wrote her and said “I am so sorry I made it hard for you; I understand why you would want to limit going to the hospital.” She wrote back “Please don’t feel the need to apologize. I needed to vent my feelings. I never object to our meetings as I get clarity and relief. I guess palliative care represents the end game. On the other hand, we are meeting with hospice care on Saturday to put that into place. I’ll probably be cranky then too. See you Monday.”

 She died suddenly and never made it to our Monday appointment.

When her daughter called to tell me the news, I told her she had wrapped her mother in a cloak of love, and we all should be so blessed. I miss Sue. Not the way you miss a family member, but as someone I cherished and learned from.

It was important for Sue to teach doctors to be careful what we tell our patients. She wanted to make sure we knew that patients may ask questions but not want to know the answers, or perhaps find it unbearable to hear the answer. That this is not a sign of weakness but can be confusing to navigate. Boston’s long-serving mayor died suddenly, just a few weeks before Sue, and she asked me, “Can that happen, can you go from walking around to being dead?”  We had been through many a dress rehearsal of how hard it was to hear what we both knew was possible, probably likely, even inevitable. Death. But in that moment, I chose instead to ask her, “Do you really want me to answer this?” She would feel upset when people would say she was “courageous,” but it does take courage to be mortal and face the endgame. But I have to hope that in the end, it isn’t about facing death as much as it is about being with each other all the way to the end.

Nancy Rappaport is a board-certified child and adolescent psychiatrist and a part-time associate professor of psychiatry at Harvard Medical School. Her research, teaching and clinical expertise focus on the collaboration between education and psychiatry. Rappaport is the author of the memoir In Her Wake: A Child Psychiatrist Explores the Mystery of Her Mother's Suicide and The Behavior Code: A Practical Guide to Understanding and Teaching the Most Challenging Students, written with behavioral analyst Jessica Minahan.

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