Abstract
This speech details my lived experience and coping strategies of a psychologist and academic diagnosed with a brain tumor. As an educator and researcher studying well-being and resilience, I summarize my experience of living through adversity and draws on the research that helped me do so. I specifically reflect on the literature of gratitude and well-being to take oppose the “fight” narrative presented at the forefront of the diagnosis. This speech script offers insight into this lived experience and calls for written speech to be utilized as a method of inquiry. Insights for healthcare practitioners and providers in navigating patient experience are discussed.
I tried it on to see how it felt Because I kept hearing those words next to name like a job like an identity like a role ~Fighter~ I look at myself in the mirror it felt okay —at first But soon it became exhausting Too heavy to lift Too much to carry Too burdensome to bear I took it off and left it on the floor war was not for me a body is not a battlefield
Introduction
In 2020, I found myself in the University Hospital Emergency Room, had an awake craniotomy, was diagnosed with a Grade 3 anaplastic astrocytoma, underwent fertility preservation, and began the journey of radiation therapy chemotherapy cycles. As a scholar and a person, I’ve always been drawn to qualitative methods that capture individuals’ lived experiences. I have kept journals since I was a child, filmed videos to capture experiences. As such, it was a surprise to no one when I documented this health journey in every way that I could.
Throughout my treatment, I was invited to give a talk, working on a speech that I thought best fit my experience and what I had learned as a resilient researcher living with brain cancer. I realized this script summarized almost everything that I would want someone to know about me if they asked about my journey. Narrative writing is a useful qualitative tool for understanding lived experience (Clandinin and Connelly, 2000). I further suggest written material beyond journals and memoirs, for example, can be used by qualitative researchers to understand these experiences. This work contributes to the qualitative inquiry method of autoethnography that uses analysis from a researcher’s personal experience to draw connection to larger social experiences and can involve a mixture of stories, images, thought, and artifacts (Ellis et al., 2011). With acknowledgment of other academics that have documented living with illness (e.g., Frank, 1995; Oakley, 2007), I hope that my work helps to provide context and counter-narrative for my life as a neurodivergent individual. I also hope it inspires qualitative work that investigates a diverse range of narratives.
Speech script
When I was a middle school science teacher, I would often tell my students to kiss their brain. I got this idea from visiting my friend’s kindergarten classroom. As a ritual in their class, she would ask them to kiss their brain. They would kiss their fingers and tap the top of their head, and it truly is as cute as you can picture it to be. So, I brought it to my middle school classroom—which in hindsight could have gone really poorly—but it ended up being a fun ritual for us too, and I would ask them to kiss their brain for the good ideas they had, the work they did in the class, or when they were going through happy and challenging times.
After teaching middle school, I came back to grad school to get my Ph.D. in psychology. I study well-being and resilience, and I also teach psychology to undergrad students and high school students. I love teaching psychology, and my absolute favorite unit to teach in intro psych is the brain. But while I love researching and teaching about the brain, I thought it would be pushing it to ask my undergrads to kiss their brain, so 3 years would go by before I would kiss my brain again.
One day after teaching, I had a terrible migraine that left half of my face numb and blurred my vision. This kept happening about every month. I saw multiple doctors, was prescribed migraine medication, and I thought migraines were just going to be a part of my life. Then this past summer, I started experiencing dizzy spells and numbness in my left arm, and something told me that I needed to move up an appointment I had with a neurologist later in the year. I finally got in to see a neurologist, and they ordered an MRI “just to check.” I was so excited for the MRI because then I could use my pictures on the PowerPoint I use to teach brain imaging, but as it turns out, my MRI wasn’t too picture-perfect. On the day of my MRI, I got a call from my neurologist, who let me know that there was a mass in my brain’s right hemisphere and advised me to go to the ER. That’s where I saw the image for the first time. I could not believe what I was seeing. I have never been more scared in my life than I was that night. And with tears dripping down my face, I kissed my brain for the first time since I had left my middle school classroom.
I made it my mantra, and I kissed my brain every day, leading up to surgery. I kissed my brain after I consented to all the scary possibilities of surgery. I kissed my brain as I was being wheeled back to my awake 13-hour craniotomy. I kissed my brain when I woke up from surgery and could not believe that I could still tap my fingers and wiggle my toes. I kissed my brain the first time I got up to walk, when I learned about the new titanium plates and staples in my head, and on every day of very painful recovery. Then about 2 weeks later, the pathology reports came back. I was diagnosed with a grade 3 anaplastic astrocytoma, a type of brain tumor under the category of gliomas. My doctors told me the plan for radiation and chemo and also gave me the time to preserve my eggs if I wanted to.
From the day I learned about my brain tumor to now, without a doubt, the most difficult period was the weeks following that pathology report. And for a long time, I couldn’t figure out why. But 1 day after therapy, I went back to look at all of the things I had been writing about this experience. I started writing poems in the Emergency Room, and I continued to do this throughout my journey. It was in looking at those writings that I began to understand what was happening.
I realized that I had been introduced to the “fight” narrative. When people heard my diagnosis, I became a fighter. “You are a fighter,” “keep fighting,” “fight like a girl,” “beat this tumor” were the top comments. And then there was the internet, the place I so desperately searched for people who had beat the odds. I soon realized that the top hashtags to search were #braintumorssuck, #cancersucks, and #cancerfighter. I understood completely why those hashtags existed, but I was desperate to find the hashtag #hiihaveabraintumorthatwillnevergoawayandimaliveandstillthriving, and I guess there just isn’t a ring to that one.
I understood then, and I still understand how the fight narrative can be empowering. But for me, I knew that wasn’t going to work. I hated the idea that I would be at war with my brain because I had spent months and years kissing my brain instead. I hated the suggestion of naming my tumor something awful because the reality is that 2% of it was left from surgery, and it is most likely going to be my neighbor for the rest of my life. I hated the guided imagery training that asked me to picture radiation as a sword slicing out the bad cells and the chemo as an army coming to war because I didn’t want to spend over a year of my life at war with my own body. I wasn’t, and am still not, overly optimistic, I do not deny the statistics or the severity of my diagnosis and disease, but I knew I could not live the rest of my life fighting a mistake in my DNA, and knowing that if it didn’t work, I wasn’t fighting hard enough.
So I continued like that. Instead of thinking about if I would be able to have kids 1 day, I preserved my eggs, and I thought of how amazing it was that my brain, despite its trauma, was able to deliver the perfect number of hormones to my body to produce enough eggs to save for a later date. Every time I went to radiation, I thought of the doctor explaining how the healthy brain cells that got damaged would repair overnight and the cancer cells could not. And when the operative notes from my surgery came out—a day that I remember and had nightmares about for weeks—I read the note out loud and sobbed happy tears and grateful tears, thinking about what my neurosurgeon and his team did. I developed a coping strategy with my therapist to set my timer for 13 minutes (1 minute for each hour of surgery), and I would focus that time on all the people, the training, and the science that went into that surgery. I started to feel such an immense sense of gratitude for my medical team, what they could do, and the research and innovation they were working on that those thoughts started to drown out the “what is my life going to be like” thoughts.
There was a clear shift for me where I started to feel much better, more hopeful, and more like myself. And I recognized that it was around the time that I rejected the “fight” narrative and started to increase the use of strategies that I had learned from my research and study of psychology. Doctors always laugh with me when they find out that I’m a biopsychology and neuroscience major and psych Ph.D. student. Then, when they ask what I’m studying, and I say that I am broadly interested in resilience and well-being, they either laugh again, say something like “oh, that’s relevant!” or go “awwww.” The irony was never lost on me. I have read so many stories and studies of resilience, but I never pictured the day I would have to experience it, feel it, and live it for myself. I started questioning how I was going to live my everyday life now, knowing everything that I did, and whether I would ever be able to dream about the things I did pre-diagnosis. The reality of the type of brain tumor I have is that even if a surgeon can get out 100% of the tumor, which is not the case for most people, including myself (even though we got very close), there are still tumor cells that remain. Talking to other brain tumor patients, I realized the word remission was not in anyone’s vocabulary, and I would often ask, “how do you live knowing that it’s there” or “when do you stop thinking about it?” I figured out that this was something that I was going to have to learn how to live with, and that’s when I started drawing on things I had learned from the field.
In my first year of undergrad, when I took a positive psychology seminar course with my advisor, I learned the three good things and the gratitude letter strategies from an intervention study that she was a part of. In a randomized placebo-controlled study, they had participants complete interventions—one involved writing a gratitude letter to someone in their life and delivering the letter, and another that asked them to write about three good things that happened to them that day and a causal explanation—or why they were good (Seligman et al., 2005). Participants who wrote a gratitude letter experienced an increase in happiness and decreased depressive symptoms that stabilized over time. The participants who completed the three good things exercise experienced increased happiness and decreased depressive symptoms that continued for 6 months. And notably, the degree to which participants continued these practices was important for the long-term effects. In that semester, I also did those practices and kept doing them—every night, I wrote in my journal about the things that went well or that I was grateful for that day and why.
I have read about this practice so many times as a researcher, and even though I knew the positive effects, I had never really practiced gratitude until I was thrown in the situation of it myself. The more I practiced gratitude, the more peace I felt with my case. I started to dream again and feel like myself again. I noticed this shift the moment I stopped focusing on what my body had done “wrong” and started focusing on what it was doing and noticed this was something I was already doing when I kissed my brain every day. This led me to want to know more about the science of gratitude and what could be happening at a neurological level beyond the found psychological outcomes.
Many research teams have studied the benefits of practicing gratitude, and there are several positive psychological and social outcomes of gratitude, like experiencing positive emotion and healthier relationships. There are also physical outcomes of having a stronger immune system and experiencing less pain (Emmons and McCullough, 2003; Russell and Fosha, 2008; Zahn et al., 2009). When we express gratitude, our brain releases dopamine and serotonin—two important neurotransmitters responsible for our emotions and mood. Studies with fMRI brain imaging also show that several parts of our brain are activated when we experience gratitude. First, the limbic system—which is the part of the brain responsible for emotional experiences and includes the hypothalamus, which regulates important functions like our sleep. Second, the medial prefrontal cortex—an area associated with the management of negative emotions. Other studies show that expressing gratitude helps us regulate stress hormones and promotes cognitive restructuring, allowing individuals to become more resilient to emotional setbacks and negative experiences.
And the cool thing is that we can intentionally activate these gratitude circuits in our brain. In general, the more we do something, the easier it becomes, and our brain works the same way. The more we activate these gratitude circuits, the less effort it takes to stimulate the pathway the next time, and the stronger those neural pathways become. Neuroplasticity refers to the brain’s ability to form new neural connections through life, so this is something that anyone can practice, and anyone can get good at.
Starting in that first semester of college, I used gratitude practices during a hard time, but I didn’t continue even though I knew the positive benefits. But feeling grateful and expressing gratitude helps us see these positives, helps us deal with negative ruminations, and grounds us in our present situation when things are going well, or even if the reality is a harsh one. By practicing gratitude, by acknowledging and appreciating even small things, we can rewire our brains to deal with present and future circumstances.
So slowly, I learned how to shift the norm of fighting what happened to my brain to celebrating and loving it. I cannot change what happened to me, but I can control how I interpret it—this is something that no statistic or worry or fear can take away from me. I continue to thank my brain for the amazing work it does every day as I prepare for 12 more rounds of chemo this year. I write down three things I am grateful for and why I am grateful for them every morning that I wake up—no matter what. I write thank you notes to my heroes in health care—doctors who make me feel brave, nurses who get the IV the first time, technicians that play my Spotify playlist during treatment, and administrative staff that make me smile. I live every day knowing that at this moment, my brain and body are giving me everything I need.
I think the universe might think it’s funny that a psych instructor and researcher who studies well-being ended up with a brain tumor. The hardest thing about the whole diagnosis has been shifting expectations about what I thought my “timeline” was. When doctors talk to me about my disease, they don’t say “if it comes back. . .” they say “when it comes back. . .”—the truth is that doctors can give me statistics and guesses, but they can’t predict what my life is going to be like, and really none of us can anyway, but what I hope I can show you is we can also be grateful for the unexpected challenges. In some ways, discovering my tumor was the worst thing that ever happened to me, and in other ways, and I know this is going to sound weird, it was the best. I know some people may find the fighter narrative powerful, and I don’t want to dismiss people going through their battles. I also don’t want to suggest that it is by any means easy to find ways to grateful in dealing with many hardships of life, but I do want to empower those that feel like me. . .that there is another way to go through your journey. . .that loving your body doesn’t have to be conditional, and I hope everyone no matter where you are or what you are going through can take a second to kiss your brain and thank it for all that it does for you.
Discussion
This written narrative insight into the factors of my own coping, surviving, and thriving amongst a life-threatening diagnosis. Drawing on my personal experience of a brain tumor diagnosis, surgery, and treatment, this work has attempted to deepen the understanding of the patient experience. Utilizing resilience as the conceptual understanding for how one copes and thrives despite adversity, I hope to be able to share my experience to add to this literature and understanding of patient experience.
Resilience
Resilience has been conceptualized in many ways. Common conceptions of resilience suggest that resilience enables people to survive, and even thrive, in the face of adversity (Davydov et al., 2010). Most of these definitions include the components of facing adversity and positive adaption (Fletcher and Sarkar, 2013; Furman et al., 2002). Cultural understandings of resilience suggest that there are genetic, psychological, family, community, social, and environmental protective factors of how one experiences trauma (Cameron et al., 2007). Understanding these contributing factors can help us build resilience in individuals facing a variety of challenges.
Resilience research has been applied to various domains of human adversity, however, it is less commonly studied in the context of disease and illness (Davydov et al., 2010). Much of the literature studying cancer patients, in particular, has focused on the negative consequences of cancer, such as stress and depression of patients, instead of focusing on possible strengths developed in facing this disease (Molina et al., 2014). Thus, in reviewing and highlighting this speech I hope to identify and highlight some of the factors that helped me thrive despite adversity—including the practice and method of gratitude.
Gratitude
Practicing gratitude was essential in coping in the most difficult times and is a habit that has remained important to me. I found perhaps the most comfort in rejecting the “fight” narrative and marinating on how I was grateful for my brain no matter the circumstances.
Some of these factors are documented and discussed in chronic illness and cancer patient well-being literature. Indeed, there is evidence suggesting that gratitude may be an important factor in increasing resilience during chronic periods of stress—in a study of women with metastatic breast cancer, researchers found that the practice of gratitude increased positive emotional and promoted higher quality relationships (Algoe and Stanton, 2012). Other researchers have concluded that gratitude interventions can improve the lives on oncology patients such that these interventions lead to higher levels of psychological functioning, greater perceived support, and greater use of coping strategies (Sztachańska et al., 2019). In my speech, I highlight the practices that contribute to my thriving—such as practicing gratitude lists, gratitude letters, and developing a gratitude mantra.
Implications
There are several practical implications to this work. In general, research has found that nurses and doctors can affect a patient’s experience with resilience (Molina et al., 2014). Thus, understanding what contributes to resilience and how it is best promoted has many implications for how health care professionals can improve patient outcomes. There is preliminary evidence that gratitude interventions may benefit oncology patients. However, this research could expand to investigate other chronic illnesses, and specifically investigate the messages patients receive that could be harmful (in reference to the “fight” narrative that was harmful to me) to determine what individuals find most empowering. For example, in my own experience, I found that ableist messages were incredibly harmful to my progress. The focus on what my brain might not be able to do suggested that any “deficit” in functioning was inherently bad. Focusing on the love I had for my brain despite these messages was enormously helpful in combatting ableism in medical and social settings. Future research might specifically investigate whether other oncology patients have had these same experiences or if self-love interventions could help manage the chronic illness experience.
While I hope for advancements in treatment and care for oncology patients, I also advocate for the increase in knowledge of how oncology experiences can be experience of resilience. I encourage future readers to know that not everything about a diagnosis has to be bad. I found hope, encouragement, and even peace is connecting with my medical team, leaning on my community, finding purpose for my experience, and displaying gratitude for my body regardless of the DNA that had been given the wrong instructions.
These memories stick to me like glue I remember the phone call I remember falling to the floor I remember seeing the picture I remember calling my loved ones I remember rolling back to the OR I remember waking up during surgery I remember the second MRI I remember the panic that hit again I will always remember the way people looked at me This is a new part of me I am learning to live with survivor stress I will not fall, but I will thrive because of it
Footnotes
Declaration of conflicting interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author received no financial support for the research, authorship, and/or publication of this article.
