In March 2021, life threw me a curveball. Before then, my days were filled with global human rights and conflict resolution work, often in tumultuous regions. From post-genocide Rwanda to post-Yugoslav war Bosnia and Herzegovina, and through numerous other conflict-affected countries, my journey eventually brought me to China in 2008, where my son and I lived for several years. I worked extensively throughout the region, with him often by my side. I’ve always found myself drawn to the most enigmatic countries—places like North Korea, Iran, Zimbabwe, and Myanmar.
Seeking stability, we settled in New York City, but life took an unexpected turn. At 51, dedicated to a health-conscious lifestyle involving yoga and cycling, I was abruptly confronted with a rare terminal illness: stage 4 bile duct cancer, or cholangiocarcinoma.
Approaching this new journey like my past adventures, I charted my course and adapted. Instead of boarding a plane at JFK, I rode the New York City subway to MSK. Rather than obtaining a visa for my passport, I was assigned a Medical Record Number, marking the beginning of a different kind of expedition. My suitcase, once filled with clothing tailored to various destinations, now held essentials for chemotherapy—items like a heating blanket, snacks and activities. The linguistic challenges shifted as well. Instead of immersing myself in foreign languages, I delved into medical terminology, learning phrases like "fibroblast growth factor receptor" and "Stereotactic Body Radiation Therapy.”
Just as my travels faced disruptions, my cancer journey was marked by unexpected changes, from hospital stays to treatment interruptions and unforeseen lifestyle adjustments. Holocaust survivor Victor Frankl's words resonated: “Between stimulus and response there is a space. In that space is our power to choose our response.” While we often can’t control external events, we do get to choose how we respond and how we navigate and live through them.
Reflecting on various travel hiccups, I am reminded of instances that demanded accepting an unwelcome stimulus and then choosing a thoughtful response. For example, I once got locked inside Kigali Central Prison during a routine visit. Aware that using my radio to call the UN office could trigger a crisis, I opted to calmly wait with the prisoners, chatting and sharing laughter until the warden returned in the early evening. Similarly, when our North Korean guide failed to appear as planned to accompany my son and me across the China-North Korea border, we calmly navigated our own way across with the assistance of border guards and fellow travelers. Striking up these conversations not only eased the situation but also provided valuable insights for our trip.
In embracing my cancer journey, I've uncovered the remarkable beauty that resides within vulnerability, the strength found in dependence on others, the warmth of a supportive community, and gratitude for the gifts my body has provided throughout my lifetime. Illness has compelled me to slow my pace, to perceive the world through fresh eyes, and to be receptive to a myriad of new experiences and connections. It has illuminated the joy of deep relationships with cherished loved ones.
Furthermore, even in the face of the rigors of chemotherapy, I've found a sense of beauty. In addition to the amazing MSK nurses who shepherded me through each infusion and with whom we celebrated when I hit my 50th, I engaged in a gratitude practice at the outset of each infusion to send thanks to the unseen collective effort necessary to bring life-saving medications to those in need—scientists, researchers, doctors, nurses, donors, trial participants, and every link in the pharmaceutical supply chain.
The courage, resilience, and generosity I have witnessed in traveling through Cholangioland have been every bit as inspiring as the unexpected love, grace, and laughter I witnessed in my professional travels in the darkest of situations: in prison cells, massacre sites, bombed out buildings, even as survivors recounted to me some of the most vulnerable and terrifying parts of their lives. As I sit with these ever intertwining emotions of joy and pain, greater peace has developed. Desmond Tutu said : “Discovering more joy does not save us from the inevitability of hardship and heartbreak. In fact, we may cry more easily, but we will laugh more easily too. Perhaps we are just more alive. Yet as we discover more joy, we can face suffering in a way that ennobles rather than embitters. We have hardship without becoming hard. We have heartbreaks without being broken.”
My odyssey in life as well as in Cholangioland has accentuated the ephemerality of our time here and the importance of each moment. This realization has led me to prioritize the quality of life over its mere duration. Over the past two and a half years, I've wholeheartedly embraced opportunities to spend cherished moments with family and loved ones, pursuing activities that resonate deeply with us, whether on American soil or during our journeys across foreign lands.
Our adventures have included traveling to over a dozen countries during my chemo breaks. I was also able to undertake an incredibly memorable work trip to Yangon, Myanmar in 2022, amidst a tumultuous military coup. By supporting and standing alongside courageous Burmese legal aid lawyers who tirelessly fight for justice, on whose behalf I have now started a legacy fund in my name, I have been able to join up my value of engaging in service with my cancer journey in a way that will live on after I am gone.
My cancer odyssey has illuminated the profound beauty that exists within the interplay of adversity and resilience, fragility and strength, vulnerability and courage. It has taught me that life's splendor transcends its length and is profoundly enriched by the depth of our experiences. With each step through Cholangioland, I've come to appreciate that a life lived with purpose and meaning, no matter its brevity, possesses a beauty that a longer life not deeply lived might lack.
A longer version of this piece is featured in the following presentation:
spectacular writing as befits spectacular stephanie
te bonsai tree you gave me is flourishing and so you will too!
selma
I wish I knew you better. My mom was close to your mom. I knew Trevor a little bit in high school. But we were too far apart in age. Your life has been, and continues to be, extraordinary. Being a father of two, I am inspired by how much of a priority you have made of including your son in your journeys. None of us know what our futures hold. But I am grateful that my present allows me access to a little bit of your fascinating life. Thank you. Keep on keeping on.