Learning Resilience Can Be a Two-Way Street
A patient and a therapist battle their demons.
Posted Sep 09, 2016
It’s the summer of 2006. I’m 43-years-old and sitting on our red living room rug sobbing so hard I can barely hold up my head. And it’s not only because I’ve never liked that boring rug. I’m thinking about my sons, Isaac, 5, and Max, 10. How long would I have to survive to make sure Isaac always remembers me? How long could I stay vibrant and fun, so that Max keeps close that version of me instead of the vulnerable cranky version I’m quickly becoming?
When I’d trained years earlier as a clinical psychology intern on inpatient psychiatric units, I never worried about receiving a diagnosis of schizophrenia. And when I did a post-doctoral fellowship at the Federal Bureau of Prisons, I never feared one day becoming an inmate myself. But from the day I started my training in psycho-oncology at Memorial Sloan Kettering Cancer Center, I was keenly aware I might find myself in my patients’ shoes one day. I couldn’t conquer this fear so I learned to live with it. I even appreciated the way it forced me to focus on having a meaningful life. My patients often coped better if they turned their Why me? into Why not me? As a psycho-oncologist, I did something similar. I learned to accept that it could happen, and went on with my day. Or so I thought.
Cancer patients’ lives are often bisected into the nostalgic before and the overwhelming after. My job was to help them rediscover coping skills that had seen them through previous crises, or discuss solutions to practical problems. But my ultimate goal was to help them maintain a sense of continuity in their lives, to remember the ways in which they used to find meaning, and how they might still. If they were mothers or fathers, they still had children to tend to and laugh with. If they used to love taking photographs, when the dust settled there would still be scenes to shoot.
Helping people cope with existential crisis inspired me to realize my long forgotten childhood dream to be a writer. I started writing personal essays about my work, whether it was about issues like denial or what it felt like to sit at someone’s deathbed.
When I discovered, at the end of my fellowship, that I was pregnant with Isaac, I took time off to raise my two boys and write a book about what I was learning at both ends of the life cycle. It felt like a special privilege to help others contemplate their mortality while I could appreciate and enjoy the early bloom of life. I was encouraged by a literary agent, though he felt I needed a “cohesive narrative arc” to tie my varied experiences together. I had no idea what that meant, but hoped I’d figure it out along the way.
* * *
After receiving my breast cancer diagnosis, I cry often. But this particular morning, collapsed on the rug, my sobbing reaches a new intensity. I’m terrorized not only by what I know, but, even more, by what I don’t. I don’t yet know my cancer’s stage or prognosis, or whether I’ll need chemotherapy or radiation. I don’t know what side effects I’ll have to endure either temporarily or permanently. All I know is tumors have popped up all over my left breast, I’ll need a double mastectomy, and the best outcome I can hope for, based on the biopsy, is Stage II, the dividing line between early and late stage cancer. Will I die before my kids are teenagers? I don’t know. How much do I trust medical science? I don’t know that either. I’d had a clean mammogram and a clean bill of health from the gynecologist just a couple of weeks before I discovered my tumors while doing a breast self-exam, which doctors no longer recommended (good thing I didn’t know that).
My biggest shock is how hard this is. All my work with cancer patients seems to have flown out the window. Now, I’m a civilian like everyone else, sobbing, unable to focus or sleep. I force myself to do the relaxation exercises I used to teach others, which helps a bit, though not enough.
I will consider taking psychiatric medication, but not yet. Meds may take the edge off my terror, but they won’t teach me how to navigate it. I consider restarting the psychotherapy I’d been in for 16 years. It’s been a couple of years since my “graduation.” But for now I prefer spending hour after hour on the phone with breast cancer survivors, most of whom I’ve never met in person. They’re friends of friends or members of email groups I belong to, whose kindness and generosity floor me. As long as I’m on the phone with them, I feel less alone.
My tears erupt this particular morning, in the silence of our apartment while my husband is at work and my sons in school. I realize that no matter how many people try to comfort me, no matter how many survivors I’ve known in worse straits—whose surgeries left them with craters where their cheek used to be, or who lost limbs, or have no hope of living out the year—I still feel profoundly alone in the world. And I think, the real fight hasn’t even started yet. How can this psycho-oncologist already be coping so badly?
Then something extraordinary happens. An image flashes through my head. And the flash is enough to put me at peace for the first time since this whole nightmare began. It is an image of Sarah, a hospital inpatient I treated briefly years before. It is this image that creates my new before and after. It is the moment I know I will find my way.
* * *
I’d met Sarah during the first year of my psycho-oncology training. Officially, the medical team asked me to see her to assess her ability to consent to treatment. But it was more than that. She’d just been diagnosed with a digestive cancer, and was already facing a make-or-break surgery in a few days; she would either be cured, or die within the year. But Sarah, then in her late 60s, had another problem too: paranoid schizophrenia. Thanks to a cocktail of psychiatric medications she’d been taking for 30 years, she was able to carve out a life for herself, thriving at her group home. But these had to be stopped immediately in the days leading up to her surgery. Psychologically speaking, Sarah was on her own for the first time in decades, just when she most needed help.
As soon as I walked in to her hospital room, I saw the first effects of her going off medications so abruptly. The medusa-like mass of brown and gray tangles about her head was my first hint she was in the midst of a psychotic episode. Personal grooming was often the first to go; when your mind is dealing with voices telling you people want to kill you, who thinks of picking up a comb? The second hint was even more straightforward: raging delusions and hallucinations. Sarah reported hearing voices constantly. And she was sure her boyfriend at the group home had been murdered by staff and that all the home’s staff and patients were covering it up.
But one aspect of Sarah’s demeanor didn’t fit this otherwise intense scene: she was the most serenely hopeful person I’d ever met. She spoke evenly and without fear, whether discussing the details of her diagnosis—which even in her deluded state she understood perfectly—or the voices and alleged murder. Wondering if this was the calm before the storm, I asked about the voices.
“There are three of them. Jesus, Moses, and Satan. It’s like they’re sitting on the bed with me and they all say different things.”
“Is it upsetting to start hearing voices again?”
Oh no!” Sarah’s lips curled up at the edges in a smile. “Jesus and Moses say nice things to me. They tell me everything will be all right. They say the doctors are trying very hard. Like that.”
“What about Satan?” I prodded. “What does he say?”
“Oh,” she shuddered, “it’s too horrible. I can’t repeat it.”
“How does that feel, when he tells you such horrible things?”
Sarah looked at me almost maternally and laughed.
“Oh, him?” she snorted, waving her hand in the air as if shooing away a pesky insect, “I just don’t pay him no mind.”
Was this seeming strength for real, or a dam about to burst?
It was real. I continued to see Sarah every day, though I slowly realized she didn’t really need my help. Despite her wild hair and psychosis, she sailed through the next days, including her surgery. She kept listening to the voices that helped her stay calm, and ignoring the ones that didn’t. The doctors were able to remove the cancer. She would need follow-up, but no further treatment. Better yet, her prognosis was excellent. Back on psych meds, Sarah happily returned to the group home, her fear of murder conspiracies a thing of the past. When I bumped into her a few months later at her follow-up appointment, her grooming now matched her demeanor, hair gathered up in a neat bun. She wore a lovely beige suit with matching shoes. We greeted each other with a smile.
It is the image of Sarah cheerfully shooing away Satan that flashes through my mind while collapsed on the red rug, stopping my tears cold, and filling me with hope. If she could find a way to ignore her demons, why not me? I don’t know how, just that I’ll figure it out. This faith brings with it a new serenity. It turns out it was I who needed Sarah’s help, rather than the other way around.
Soon, I start integrating my before and after. To my surprise, it isn’t only the people who were cured, like Sarah, who inspire me. It’s everyone trying to live their lives in the face of life’s random cruelties. I think of a dying grandfather who treated his young grandchildren to a trip they’d remember forever, even if they wouldn’t remember him; or the man who hoped there were newspapers in heaven so he could keep up with all the latest inventions. I remember so many who tried to teach their friends and family—sometimes even from their deathbeds—the joy of being alive for as long as we’ve got. Rather than scaring me, my memories console, as they remind me what fine company I’m in.
It has been nine years since that day on the rug. I did have chemotherapy and, a few years later—after a second bout of cancer—radiation, too. With Max now in college and Isaac in high school, I no longer worry how well they’ll remember me. I am back at Memorial Sloan Kettering as a psycho-oncology consultant, as well as for yearly follow-up checkups. I did finally publish that book, The House on Crash Corner (and Other Unavoidable Calamities), about what I learned from both sides of the hospital bed. I’ve even softened toward the red rug.
I guess I found that cohesive narrative arc.
A version of this essay is published in How Does That Make You Feel: True Confessions from Both Sides of the Therapy Couch, edited by Sherry Amatenstein. Copyright © 2016. Available from Seal Press, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.