A version of this post also appeared on the End Well blog. This year I am honored to be an ePatient Ambassador for The End Well Symposium, taking place December 6, 2018, in San Fransisco, CA. It will be a “day of learning and connection as we engage with one another, across disciplines, to transform the end of life into a human-centered experience.”
For months, I had two task reminders saved to my computer’s desktop. The note on the left side of the screen listed the assignments I still had to complete for school. The note on the right side of the screen read: “Fill out advance directive.” These notes were a daily reminder of my conflicting identities. The left-side version of me: a 26-year-old medical student with many opportunities ahead; the right-side version of me: a young adult living with terminal brain cancer.
I wrote my advance directive a week before I was scheduled for an awake brain surgery while sitting on a dock in San Juan Island. I had traveled to the island hoping to be immersed in nature while I contemplated my end-of-life experience. For hours, I sat on the dock thinking about the end: The type of treatment I would want, how I would want to be made comfortable, what I wanted my loved ones to know, and what I wanted my funeral to be like.
From the dock, I watched a seal bob its head out of the water like a mother checking on its child. Eagles swooped over my head diving for fish and crab. In this serenity, I settled into a moment of indescribable presence — for me, the epitome of what it means to live. Tears ran down my cheeks as I thought about the moment when my presence would become absence.
It was not the first time I had contemplated the fragility of my mortality. I was first diagnosed with a brain tumor at twelve: A grade II oligodendroglioma located in the motor cortex that controls my right side. The night before my first surgery, I stood in the bathroom, stared at my reflection, and started to pray.
My prayers were not religious, rather, I imagined myself wishing on a shooting star. I promised any entity listening that, if I survived my surgery, I would be a better son, a better brother, a better person in this world.
I didn’t realize it then but, in thinking about my death, I was discovering my values on family and giving back to society. I was learning how I wished to live.
Coming out of treatment, I was determined to live life to the fullest. For the next ten years, I strived to fulfill the promise I had made to myself the night before my surgery. I thrived in college, traveled the world, and pursued my passions. Then, at twenty-three, my cancer recurred. Immediately, the life I’d been building for myself became uncertain. It was as if death itself roamed the streets, determined to find my door.
As I underwent radiation and chemotherapy, my struggles became more emotional than physical. The tangibility of my mortality paralyzed me. End of life decisions are part of routine care for the elderly but not for young adults. It is taboo for a young person like me to even talk about death. It is considered too dark, too deep, too antithetical to the trajectory of youth. But, without these conversations, how can young people adequately cope with death when it, inevitably, enters their lives?
I faced the death taboo head on by speaking and writing on the topic in public forums. Young people I connected with shared similar emotional struggles. I learned that to face uncertainty, I needed to be present. Life was no longer about what I wanted to do in the future, but how I wanted to live in the present. In thinking about these questions, I began building on the values I embraced at age twelve.
As I finished my advance directive, the ocean breeze chilled the tears on my cheeks. I watched the sun set behind the mountains. I was no longer fearful of the surgery or my tumor. I felt content knowing that, if I stayed true to my values, I could remain unencumbered by the uncertainty I was about to face.
A month after leaving San Juan Island, biopsy results revealed that the remaining inoperable section of my tumor, stretching like octopus tentacles into other parts of my brain, had evolved to a more aggressive form: A grade III anaplastic oligodendroglioma. With these results, my uncertainty became acute. Death had found my street, but still hadn’t found my door.
In spite of this news, I remained fulfilled. It is in thinking about my death that my values have become immensely clear: First, to prioritize presence, quality of life, and time for relationships. Second, to use my experiences and the privileges I’ve benefited from to help others. In staying true to my values, I know how I wish to live, and I know, when the time comes, how I wish to end well.