I was very excited to attend the End Well Conference in Los Angeles, California this past Thursday. The event brought together an exceptional lineup of thought leaders, speakers, and medical experts focusing on a topic close to my heart: integrating the end of life into our daily existence and navigating mortality with a sense of purpose and significance.
The End Well Project's commitment to transforming societal perceptions, fostering impactful dialogues, and redefining our approach to end-of-life deeply resonates with my core convictions. It strongly resonates with my own belief about the importance that we all treat end-of-life as an integral part of our journey. This initiative achieves this through profound discussions that merge cutting-edge scientific insights with compelling storytelling. Additionally, the opportunity to engage with individuals like Tig Notaro, celebrated for bravely sharing her cancer diagnosis in one of her comedy specials, further fueled my enthusiasm for this symposium.
Moreover, the timing of the gathering was particularly poignant, taking place in the aftermath of Halloween, All Saints' Day, and All Souls' Day. I appreciate how this specific juncture in the year serves as a powerful reminder of life's transient nature, emphasizing the profound interconnectedness between the living and the departed.
So I was more than excited to soak up insights from the End Well gathering.
However, shortly after the conference began – perhaps because the conference began -- a thought burst into my mind: are the results of my recent CT scan available ? Without waiting until a break, I succumbed to temptation and immediately opened the app on my phone.
The impact was sudden.
The scan report delivered devastating news—a significant new tumor emerged in my liver, along with a blockage, known as a thrombus, obstructing the only unblocked vein responsible for draining my liver.
I first sat there in numbness, shock and disbelief. This was soon followed by profound fear, anxiety, and uncertainty about my health and future.
My mind offered a story: Getting this news during a discussion about navigating the end-of-life journey was completely fitting! Shouldn’t this be the perfect scenario for encountering the universe's ironic delivery of this news? However, deep inside of me I wished to be anywhere but there, amongst strangers, no matter how expert in matters of death. After all, I was in an environment that lacked the intimate compassion and connection to help me confront this immediate reality of my mortality.
For a little while, I was torn by the incongruity. My scan results were not details I could share during the conference's discussions, nor were they topics I wished to entertain in casual conversations. Moreover, the news shattered a meticulously planned Thanksgiving and birthday holiday—a Kelp forest scuba dive; celebrations with cherished family and friends; and an anticipated Esalen retreat.
While seated in the audience processing the news, my thoughts veered into a dark place. They raced from imagining the potential sensations of a liver 'heart attack' should that vein completely close, to contemplating a new set of logistical hurdles—such as managing my airline arrangements to swiftly return to NYC. Plus it was clear that I would now be spending my birthday at Memorial Sloan Kettering.
Thankfully, I connected with a friend of a dear friend who was also attending the conference. We shared lunch, and our time together offered a comforting break. Our life journeys couldn't have been more different—she, a healthy mother to a two-year-old son, venturing into establishing a business focused on encouraging conversations about end-of-life matters, ensuring these discussions happen before they become urgent. Meanwhile, I found myself facing that very urgency, weighed down by newfound gravity. Yet, within the warmth of her connection, I found solace to recenter.
During the afternoon presentations, I was partially focused, engrossed by the compelling speakers, heartfelt stories, and thought-provoking topics around living a full life until the physical end. In the dimly lit room, my silent tears streamed down unnoticed, hidden within the shadows cast by the stage.
But as the final presentation drew to a close, I felt an urgent need to escape the crowd, allowing myself the freedom to release my emotions without restraint. I left before the last event and made my way to Santa Monica Beach.
The ocean has always been a sanctuary for me—a place that embraces me in peaceful serenity, awe-inspiring wonder, and unconditional acceptance.
I gave myself permission to fully immerse in a torrent of emotions—sadness, grief, fear, sorrow and pain.
Initially, my grief over my health issues took the forefront, but soon, it was overshadowed by a surge of stronger emotions—despair, anguish and rage—stemming from the amplified violence, anger, and divisiveness prevalent in our world. All these emotions converged into a singular, nearly overwhelming experience.
To presence myself within this emotional tempest, I attuned to the sensations surrounding me—the wind softly brushing against my face, the vast expanse of open water, the comforting rhythm of the ocean, the gentle touch of the waves on my sandy feet. Feeling the full spectrum of my emotions, I surrendered them to the expansive, curative embrace of the waves. The flux of life felt tangible, and from this amalgamation of emotions, sensations, and awareness emerged a tentative sense of peace.
I took a seat as the sun was setting and dove into various practices, including meditation, breathwork and RAIN (Recognize, Allow, Investigate, Nurture), to infuse mindfulness and compassion into my emotional whirlwind, allowing me to acknowledge and tenderly embrace my feelings with care and understanding.
As I was working through the “investigation” part of RAIN, I realized the necessity of reinstating proper boundaries within myself. Our tumultuous era and my health situation had eroded some of these boundaries, leaving me feeling exposed against the turbulent storms within and without.
I realized that navigating the best way to engage with the world had become increasingly challenging. Immersed in an overwhelming deluge of pain, suffering, and outrage, I was finding my balance faltering. The continual exposure to cycles of trauma on the internet didn't do anything to quell violence; instead, it was ensnaring me in an unremitting cycle.
Throughout my life, I've followed a recurring pattern—relying on anger and outrage to drive my pursuit of "justice" in the world. However, this approach not only consumed me emotionally but also echoed the wisdom of Bell Hooks: "When you’re fucked-up and lead the revolution, you're likely to get a fucked-up revolution." Consequently, I made the decision a few years ago to depart from a previous career energized by perpetual outrage, redirecting my focus towards work that resonates from the heart. Reflecting on these past 3 years in my new role, I now question why I didn't make this shift sooner. Witnessing the deep impact of changes in my daily endeavors, I realize that this transformation embodies precisely the change our world so urgently requires.
In the end I probably didn’t need to completely change careers to step more deeply into heart-centered work. After all, also according to Bell Hooks, “fighting oppression doesn't necessitate anger or conflict; opening our hearts is equally crucial.” For me, the career change was the perfect answer, and I’m eternally grateful that I made it before my diagnosis. Now it’s a passion and not a regret.
As night descended and the air grew colder, I returned to my Airbnb, where I finally spoke to two dear friends. Rediscovering my equilibrium, I grasped the importance of setting boundaries and regulating the flow of information while being aware of intense emotions. Acknowledging and embracing my full range of emotions allowed me to transition from grappling with the world's collective trauma—anger, rage, and grief—back to dealing with the emotions triggered by my recent scan results. This transformative process helped me adopt a more nuanced equilibrium and the establishment of new boundaries, fostering resilience and guiding my personal journey. With this experience, I am now prepared to confront my health adversities with newfound grace, wisdom and resolve.
Wow Stephanie, I was floored by not only your incredible writing but your clarity of thought, your generosity, and fearless honestly. This is an essay to be read over and over. You have managed to turn terror and crisis into profound love and the fullest experience of life. This essay is a touchstone. You are the full power of the sea.
Dear Stephanie, I am sorry and sad to hear the news and to imagine you experiencing such a turmoil. In parallel, I am touched by your reflections in this post. You articulate our humanity - in beautiful ways - and it has me reflect on mine. My life has been driven by fear and how to avoid feeling it by contributing to improving my environment. I have been as well trying to transform this fear driven life into a hesrt-open way of engaging in the world. I feel sorry for myself (I exposed and keep exposing my body to fear) and for many of us who live in fear (with thoughts for those who live in intense fear) and the compassion renews my desire and determination to engage with the heart and help us do so as a community and society. Thank you. Once again you spread consciousness, love and courage. Which happen to be my three core values.