By Tess Pilkington
A working mission of physicians is to cure illness and provide answers in very difficult situations. Dr. Marina Benaur, an Assistant Clinical Professor of Psychiatry at Weill-Cornell NYPH with a private psychiatric clinical in New York City, tells me another: to be present.
Marina is a rarity in the matters of the brain and mind, having trained in both neurology and psychiatry. It has always seemed artificial to her that the two practices were so disparate. For the past 15 years, neurologists have referred their patients to Marina for psychiatric care.
One of these neurologists is Deputy Director of the Neuro-Oncology Division at Columbia University, Dr. Fabio Iwamoto. In 2017 he referred Marina to a patient living with glioblastoma (GBM) brain cancer, one of the deadliest forms of brain cancer which has a median life expectancy at diagnosis of 12 to 16 months.
And that’s how Marina started treating my mom.
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Marina suggests that overwhelming uncertainty is one of the psychic challenges of terminal illness. The person facing a deadly illness is directly confronted by the limits of our knowledge and control over fate, while called upon to summon strength to fight for their life against dismal odds.
This impossibly difficult, disorienting reality can “roll in like a fog,” she tells me, obscuring one’s ability to see clearly. When my mom was first diagnosed with GBM, uncertainty frequented our conversations. It was acknowledged yet never defined. Any attempts to comprehend the terminal nature of her condition proved unsuccessful, for all of us.
GBM is uncommonly cruel. It often strikes people who are otherwise living a vibrant, healthy life. In hindsight, the only signs my mom displayed before diagnosis were forgetting her glasses around the house slightly more frequently than normal. Because GBM rarely displays symptoms early on, people often realize they have the disease once it has already progressed to a dangerous degree.
“I am a doctor, but I have to first and foremost be a human being with a person who has just experienced an incredible shock,” Marina says.
I remember the first time my mom met Marina. She described it to me as something she really needed to do, for herself. Although she wasn’t shy to share her anxieties with Dr. Iwamoto, it felt good to meet someone who focused directly on her mental well-being.
I’m not sure what my mum shared with Marina in those first sessions. I’m not sure if she felt denial, anger, sadness, rage, confusion, or a mixture of every feeling there is. Maybe the shock numbed her to any emotion at all.
It was clear, however, that once a week, she escaped to a room on the Upper East Side where even the most painful feelings she tried her best to spare from her children could be heard. The room was a treatment in itself; it served as “a holding environment” Marina says.
“It’s a brain cancer, and the brain is sort of the seed of the mind which is a seed of the self — the level of trauma with GBM really cannot be underestimated.” – Dr. Marina Benaur
The very idea of cancer of the brain is uniquely traumatic, distinct from other types of terminal illness, more frightening because we rightly view the brain as the instrument of the mind, the generator of the “self”. The thought of invasive illness in the brain is especially threatening to that sense of selfhood and can be crushing to accept.
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I sometimes went with my mom on hospital visits. I would sit and listen to the doctors in real time, touch the machines that scanned her brain, bond with her on the subway ride there and back. But Marina and her office were always a mystery to me. They were my mom’s personal treasure.
During the five years from receiving her diagnosis to her death in 2021, my mom started OurBrainBank, a non-profit to turn GBM from terminal to treatable, powered by patients. She also wrote a memoir, All In My Head, about her life and facing up to the loss of it. Her days began with a lap around Prospect Park with our dog Jazzy, striking up conversation with the following week’s dinner guests. She lived very fully. There was so much life. It’s no coincidence that during that time she met with Marina regularly.
Psychiatrist Dr. Milton Viederman has argued that the psychotherapeutic life narrative should be an initial treatment for patients in crisis situations. By asking the patient to tell the story of their life from the beginning, the weaving of the narrative itself becomes therapeutic by reestablishing their sense of selfhood, autonomy, and dignity.
Marina’s office was a chamber of reflection: What relationships were important to my mom? Could she remember her childhood bedroom? In encouraging my mom to narrate her life, Marina got her also to identify opportunities for action: Which relationships did she want to invest in? Was there anything she urgently wanted to repair?
During that time, Marina lent her a book, the Holocaust survivor Viktor Frankl’s Man’s Search for Meaning, which argues that in each moment, no matter how seemingly hopeless or awful, one has a choice of how to think and act about things.
Finding opportunities in the present allowed for forward motion, towards the next present. It helped my mom to cope. It helped her to find meaning in it all.
I think it meant that even when she faced death, she had a choice about how to do it. And I do think that book gave her a real sense of resilience. Choice stayed with her up until her last breath. It became her way of being in the world.
“The person with GBM is a more intense consideration of the general existential state of being a human being.” – Dr. Marina Benaur
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You’ve probably heard of the Kubler-Ross stages of grief. First comes denial, followed by anger, bargaining, depression, and finally acceptance. These ‘stages’ can actually more accurately be understood as ‘states’ of being, Marina explains to me – it is not the order that matters, but being aware of the different feelings and coping efforts that might dominate the person facing devastating loss. Anger can creep in after the initial shock of a diagnosis wears off and the unfairness of reality sets in. What that anger becomes, however, varies from person to person.
For some, this anger can become a fierce determination to hunt down the best treatments, relentlessly. But there is always the risk that this behavior can become destructive, robbing a person of the time in which they could be having meaningful connection. It can also feed into depression, a completely separate beast of its own.
Psychiatric or neuropsychiatric treatment can help at this pivotal moment. They can help in the “balancing act,” as Marina puts it, of finding meaning so as not to despair and succumb to the uncertainty, while also embracing the reality of the disease.
“Engaging with the illness with the blinders on may feel like fighting, but it can actually be a form of denial.” – Dr. Marina Benaur
Physicians cannot cure the human condition. Mortality will never leave us. Marina’s understanding of this common denominator allows her to act as a companion to her patients; as someone they can go through some of the most challenging times of their life with, through illness and even into death.
And yet, psychological treatment for those living with brain illnesses is not standardized. “It’s not an understood necessity,” she confides. Perhaps if we valued the meaning in our moments as much as we do extending them, our perception of necessity would change too.
Tess Pilkington is a board member of the international non-profit founded by her mother Jessica Morris, OurBrainBank. OBB is dedicated to turning GBM from terminal to treatable, powered by patients.
To find out more about OurBrainBank, or to support OBB’s work, visit its website. Follow OBB on Twitter or LinkedIn.
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