Beyond the Horizon: A Mother's Journey of Love, Legacy, and Final Farewell

Second Installment in Series on End-of-Life Arrangements

Introduction

In this second installment of our series on end-of-life arrangements (initial post here), we delve into the heart of my journey with my son, Adrian, as we navigate the profound changes brought about by terminal illness. From the diagnosis onward, our lives began a transformative voyage, revealing the depth of love and the strength of bonds that transcend the specter of death.

This story reveals how facing mortality led us to discover beauty in despair and strength in vulnerability. It explores a variety of experiences since my diagnosis, from silent dialogues with the ocean's depths to exhilarating leaps from the sky, engaging with ancient spiritual practices and awe at the marvels of modern science. Each experience unfolds into lessons of courage, love, and resilience. Our narrative goes beyond facing death; it’s about the richness of life, the bonds that unite us, and the enduring legacy of love that outlasts our physical presence.

Our journey underscores the transformative power of love to overcome fear and loss, emphasizing the significance of valuing every moment and surrendering to life's mysteries. It's a process of preparation, not only for Adrian as he faces a future without me but for us both to grasp the essence of living and loving without limit.

By sharing this story, I aim to provide solace and encourage a deeper appreciation for the transient beauty of life and the lasting strength of our loving connections.

Thresholds of Memory: Celebrating Life's Milestones

Throughout our lives, we encounter a series of ‘finals’—distinct yet impactful milestones that mark the conclusion of one chapter and the beginning of another. From the last story read beneath the soft glow of a nightlight to the unnoticed final time we lift our children, from tearful farewells at the preschool gate to the burst of pride at graduation, these moments form a intricate tapestry of our collective journey. Each milestone, filled with joy and a hint of melancholy, captures the unyielding flow of time.

Navigating these "Thresholds of Memory," we discover that each milestone is laden with emotional complexity, prompting deeper contemplation. They stand not just as markers of time but as beacons highlighting the ephemeral nature of life, encouraging us to value the journey as much as the destinations. These pivotal instances lead us to a deeper appreciation of life itself—unveiling the strength we gain from facing changes and the profound connections that support us along the way.

As I’ve welcomed each milestone as an important part of my path, life threw my son and I an unexpected curveball that redefined what it meant to cross a threshold. This unplanned moment was a stark reminder that some of life's most significant thresholds come unannounced, challenging us to face them with courage and adapt in ways we never imagined.

Echoes of a Fateful Call: Navigating the Tides of Change

Three years ago, I bridged the distance with a call to Adrian during his gap year working in nature conservation in California. The call interrupted his date in a bookstore with news that would pivot our lives into uncharted waters: a scan showing malignant liver tumors. (Fear not: the woman from his date not only became his partner for several years but also continues to be a dear friend of our family).

Adrian's response—characterized by shock and fear in the face of the unknown—reflected my own inner turmoil, as my heart ached at the thought of delivering such devastating news to him. Our lives, intricately woven together, now confronted a challenge that seemed insurmountable. This conversation, though shrouded in the darkness of uncertainty, unknowingly laid the first stone on a path that would bring us closer in ways beyond our comprehension. What initially loomed as a harbinger of despair transformed into a crucible for our relationship, forging bonds of understanding, resilience, and an even deeper love through the trials that lay ahead.

Last month, in a twist of fate (he was on his way to Death Valley with friends), Adrian found himself back in that very same bookstore exactly three years on. From there, he reached out to me to share reflections on our odyssey since that life-altering call. Our conversation, steeped in awe and gratitude, illuminated the remarkable growth and resilience we'd nurtured in the face of adversity. Together, we acknowledged the profound transformation of our relationship and ourselves, celebrating the resilience of love and the unexpected beauty that emerges from life’s most formidable challenges.

Our exchange highlighted the unpredictable dance of life, where fortune and adversity are forever intertwined, teaching us invaluable lessons about the nature of our existence. Navigating these waves of change, we discovered the core of our shared legacy—a deepened understanding and appreciation for each other, for the preciousness of life, and for the journey we've undertaken together.

In our reflection, we revisited the parable of the Chinese farmer, eloquently summarized by Alan Watts: “You never know what will be the consequence of the misfortune; or, you never know what will be the consequences of good fortune.” This wisdom deeply resonates with our own journey, a narrative richly interwoven with moments of both light and shadow, embodying the complex beauty and profound depth that emerges from life’s unpredictable tapestry.

This understanding has become a cornerstone of our experience, reinforcing the notion that it's the balance of contrasting experiences that shapes the beauty and richness of life.

Embracing the Journey: Adventures and Resilience

In the shadow of my diagnosis, a powerful resolve was ignited within me. I was determined to ensure that our time together, though uncertain in length, would be immeasurably rich in depth. This determination propelled us to seize the moments between the relentless cycles of treatment, crafting them into extraordinary adventures. These experiences drew us into stunning realms of awe and discovery, deepening our bond with the world around us and with each other. With this purpose guiding me, I saw my diagnosis not as a restriction, but as a catalyst for drawing Adrian out of the vortex of teenage distractions and into the cerulean embrace of adventure. As we embarked on these experiences, we moved from the comforting embrace of the earth to the vast expanse of the sky and sea, each environment presenting its distinct lessons and delights.

From the Depths of the Ocean to the Skies Above: Adrenaline Adventures

To me, the ocean has always been more than a body of water; it's a spiritual refuge where the universe’s secrets and splendors merge, requiring full engagement with the present. Despite being an advanced scuba diver, the thought of introducing Adrian to this world had always filled me with apprehension about the risks involved. I believed there was ample time to share this part of my life with him. But now the luxury of time was slipping away.

So we plunged into aquatic adventures that mirrored the broad spectrum of life’s journey—confronting fears, embracing the vast mysteries ahead, and unveiling the hidden wonders beneath the surface. The ocean’s mystical creatures delivered joy like no other, their secretive existences deepening our appreciation and connection with the natural realm. These ventures did far more than merely expose us to the marvels of the deep; they strengthened our relationship, continuously reminding us of the mutual marvel and reverence that life inspires.

“We are here to awaken from our illusion of separateness.” - Thich Nhat Hanh

Manta Magic: A gentle tap from one on Adrian's head, another gracefully escorting me back to the boat.

Among our numerous expeditions, our night dive off Kona's coast, Hawaii, remains unforgettable. This dive, known as ‘pelagic magic,’ took us into the deep ocean abyss, three miles offshore and beyond 3,000 feet deep, representing a bold leap into the unknown. As the cold dark water surrounded us, we were greeted by a mesmerizing universe of iridescent sea creatures. The delicate beauty of eel larvae, with their see-through heads and ghost-like bodies; larval shrimps and crabs ingeniously catching rides on jellyfish; juvenile fish journeying within the safe haven of jellyfish bells; and the soft luminescence of squid and octopus hatchlings lighting up the water enchanted us. Their movements were like a radiant ballet under the sea, evoking a sense of wonder and deep respect. This adventure perfectly reflected the essence of our journey—venturing into the unknown and discovering unexpected beauty and connections, deepening our bond with the world around us.

A moment of profound vulnerability left a lasting impression on us during this dive. A small jellyfish-like creature, drifting close to Adrian, vanished upon contact with a cable. Adrian’s face contorted in horror as he slapped his hand to his head in distress at witnessing such a delicate life extinguished. It was a vivid and poignant reminder of life’s fragility and the intricate balance within nature’s ballet

Another dive that carved a deep memory was our foray into the world of shipwrecks.

Lessons in Trust: The Shipwreck Dive

Adrian’s enthusiasm led us to a shipwreck certification course, a decision that brought us face-to-face with the tangible echoes of history submerged beneath the waves. During one of our culminating dives, Adrian’s rope became entangled in a sunken vessel's eerie grip. With extremely poor visibility and dwindling air supplies, a visceral fear gripped me, sending my heart into a frantic race against my chest wall. My every instinct screamed for me to intervene, yet I forced myself to stand back and slow my breathing, placing my trust in Adrian's capabilities. Not long after, I watched him calmly untangle himself, and my fear morphed into overwhelming pride. This instance became more than just a dive; it was a lesson in trust and the art of letting go, which will be essential for me to part with Adrian and this life in peace.

As we ascended from the ocean's depths, our adventurous spirits soared to new heights, quite literally. Moving from water to air marked a transition not only in our surroundings but also in the essence of our challenges and rewards.

Leaping into the Sky: Embracing the Unknown

Skydiving quickly made its way onto our agenda, a testament to Adrian's boundless zest for adventure and his meticulous approach to planning. Fresh from underwater expeditions (mindful, of course, of scuba surface interval guidelines), we found ourselves drawn to the exhilarating world of the dropzone, buoyed by the robust winds at Hawaii’s Big Island's northern edge.

The diagnosis had recalibrated my sense of risk—after all, when faced with the ultimate uncertainty, what more was there to fear? Yet, skydiving introduced a challenge of a different sort, demanding an unparalleled trust and surrender. The legal waivers and cautionary briefings outlined the risks (“there is no perfect pilot, no perfect plane, no perfect parachute”), while the casual demeanor of young receptionists moonlighting as parachute packers, belied the gravity of our endeavor. Michael, choosing to keep his feet firmly on the ground, observed as we ventured into this uncharted territory. Elevated above the concerns of the everyday, Adrian and I found ourselves at the edge of a profound trust fall, both literal and figurative, ready to dive into life’s open arms. He even convinced me to embrace the sky with bare feet.

Crammed into a tiny plane seemingly held together by determination and duct tape, we ascended into the gusting winds. Beneath us, the landscape transformed into a miniature diorama, the ocean’s immensity serving as a dramatic contrast. When the door swung open and Adrian vanished into the azure expanse, my deep-seated fear of leaping into the void was eclipsed by a powerful maternal urge to follow my son into the unknown.

The fall, rapid at first, soon felt like flying; fear gave way to exhilaration. The deployment of the parachute brought a surreal pause in time, a moment of peace amid the adrenaline. Descending under the canopy, the vibrant tapestry of the island reclaimed my attention, the ocean's vastness now just a part of the wider panorama.

Adrian's safe return to earth below me sparked a profound joy, and our landing was a pledge for more adventures in the realm of the skies. Skydiving became more than a test of bravery against heights or a chase for adrenaline; it mirrored our journey through illness—lessons in courage, trust, and the art of seizing every fleeting moment with open hearts. In this leap, we found the beauty of release, of freely letting go into the arms of the unknown.

Geneva Tribe and More Air Time

Our next dance with gravity didn't make us wait. On a summer return to Geneva, a beloved city marked by both of our births —we embarked on a voyage through the rich mosaic of our histories. It was a journey marked by reconnection, as we reignited bonds with cherished friends, wandered by our former lakeside apartment, ascended the breathtaking Rochers-de-Naye from Montreux — a backdrop to Adrian's enjoyment of the Jazz Festival while I took time to rest— floated down the Rhone on an inner tube, and stopped by the Clinique de Grangettes, where Adrian first announced his arrival to the world (the clinic where I was born was shuttered long ago for malpractice!). Finally, we paused for moments of reflection in the church that bore witness to EJ's and my vows and Adrian’s baptism.

Part of the GVA tribe

Soon, the slopes of the Saleve, just on Geneva’s outskirts, called to us, urging us to once again merge with the sky. Our paragliding leap, freed from the constraints of legal waivers—perhaps the cross-border flight from France into Switzerland rendered such earthly concerns moot?—echoed the involuntary leaps of faith required by my illness. Running towards the cliff’s edge, only to be caught by the parachute at the last moment, offered a thrill defined by its stark contrast: a voluntary surrender to the abyss versus the involuntary challenges cast by my health.

As Adrian jumped, I inhaled deeply, grounding myself in the moment—a tangible reminder to trust. Yet, the moment I leaped, a surprise gust swept me upwards, carrying me far above the Saleve into a realm where time felt paused. From this vantage, Adrian and the other paragliders dwindled to specks below, leaving me adrift in contemplation on these fleeting joys—experiences that would have been unlikely without my illness.

Beneath, Adrian waited an extra thirty minutes for my eventual, somewhat graceless return to the ground. My face-plant of a landing left me with a collection of bruises—each one a badge of honor celebrating our voyage through the unknown. These marks testified to the essence of our adventure: a reaffirmation of the magic found in facing uncertainty. In this aerial ballet, the exhilaration of flight mirrored a deeper realization: our innate ability to confront life's hurdles with courage. Choosing to undertake these adventures, especially against the backdrop of my health issues, highlighted a profound connection between Adrian's journey and mine, illustrating a complex tapestry of literal and metaphorical rises and falls.

Courage Beyond Bounds: Navigating Fear and Transcending Limits

Throughout our journey from the lofty heights of the sky to the enigmatic depths of the sea, Adrian and I undertook deep explorations of self, challenging our personal boundaries and fostering a shared resilience. While the plunge into the ocean's nocturnal realm posed the greatest test for Adrian, my fear peaked during our skyward adventures. These shared moments of vulnerability revealed a deep truth: amidst life's tumult, there exists immense potential for beauty, love, and personal growth. Together, we found the strength to rise above our fears.

The exhilarating experiences that now weave through our tapestry of memories contribute to the legacy I wish to impart to Adrian. This legacy is one of deep love, bold exploration, and the courage to experience life head-on. It underscores the value of living to the fullest, encouraging us to cherish each instant and embrace every opportunity to grow, broaden our understanding of the world, and deepen our bond with one another.

Navigating Life's Rapids: Embracing the Unexpected

My illness has become intertwined with our adventures, transforming what were once simple travels into journeys rich with complexity and depth. This reality has altered our approach to exploration, often leading to a reversal of roles—where I've found myself embracing vulnerability, Adrian has stepped up as a caretaker, embodying compassion and strength. It's expected for children to eventually care for their parents, but facing this vulnerability so early in life, despite a history of robust health, was unforeseen.

Our bond has been tested and strengthened by health challenges across continents—from strep throat in Honduras and COVID-19 in Morocco to a harrowing incident of underwater regurgitation in Belize's Blue Hole and various infections in China and Peru, largely due to chemotherapy-induced immunosuppression. Each illness, including one that left me bedridden during Family Weekend at Claremont McKenna College last year, has deepened our connection, making mutual support the foundation of our relationship.

When needed, Adrian has effortlessly shifted from son and travel partner to vigilant caregiver, intuitively addressing my health needs. This change demanded a meticulous orchestration of our lives, from managing medications to preemptively scouting medical facilities.

Adrian crafted an incredible Oud-learning curriculum in Morocco, only to have his mom show up and get COVID

In the more remote corners to which we’ve ventured, where the specter of limited healthcare hung heavily, we were compelled to confront the delicate balance of life, engaging in raw, open dialogues about mortality.

The presence of these medical uncertainties brought a stark realization—that any one of our adventures might abruptly be halted by my passing. With this sobering thought, we made a pact before setting out: to embark on each journey with a shared understanding that, should the worst happen, we would harbor no regrets about our decision to proceed.

Rather than casting a shadow over our journeys, these reflections sparked deep insights, turning potentially somber moments into sources of strength and unity. Embracing life with purpose and intention, especially in how we assess risks and cherish relationships, has infused our travels with deeper meaning. This mindset has enriched each voyage, amplifying the joy of moments of health and vitality amidst our shared vulnerability.

Curiously, on the occasions we both succumbed to the same ailment, as happened in China and at an Omega retreat in upstate NY, our illnesses never overlapped, allowing the roles of caregiver and patient to switch between us.

The myriad challenges we've faced have transformed from simple obstacles into profound teachers, showing us the virtues of presence, patience, and faith. With each hurdle and convalescence, we discovered depths of strength and resilience we didn't know we had, moving through life's uncertainties with a connection only deepened by the adversities illness brings.

India: A Reflective Odyssey through Kerala and Tamil Nadu

Adrian's growing fascination with Indian music and culture steered our compass toward India for our next adventure. (Although I had taken him as a toddler, he insisted that experience didn't count.) Despite numerous visits to India, the South remained unexplored territory for me. Thus, we set off on a trek through the lush landscapes of Kerala and Tamil Nadu in Southern India, ready to immerse ourselves in the region's rich tapestry of sights, sounds, and spiritual history.

We began our trip in the serene ambiance of a yoga ashram near the Neyyar Reservoir, surrounded by vibrant wildlife, immersing ourselves in the ancient practice. It was a joy to witness Adrian discover his own unique connection to yoga, embarking on a journey parallel yet distinct from my own deep relationship with the yogic path.

Our exploration led us to Auroville, a UNESCO-recognized community dedicated to peace, sustainability, and spiritual advancement. In this remarkable community, we soaked in the unique ethos, concluding our stay with a session of meditation in the Matrimandir, a sanctuary of tranquility and peace.

Matrimandir, Auroville - December 2022

We visited Chennai, Pondicherry, Thiruvananthapuram, and Tiruvannamalai, renowned for its holy Arunachala Hill and the Ramana Maharshi Ashram. At Kanyakumari, India's southernmost point, we immersed our feet in the divine 'Triveni Sangam'—where three seas converge—and visited Kanyakumari Temple. Throughout the trip, Adrian immersed himself in traditional Indian music, reveling in performances that welcomed both dawn and dusk. (I seized those moments for some much-needed rest!)

We welcomed New Year's Eve in the company of a vibrant Auroville community by the sea, with conscious dance, a community circle, and spectacular fireworks. It was a time of reflection, where we contemplated what we were thankful for in the past year, elements of which are shared in this New Year’s update message to friends.

Connecting with remarkable individuals, exploring sacred sites, and immersing ourselves in Indian culture and spirituality formed the essence of our journey, weaving a vibrant tapestry of devotion, joy, and gratitude.

Peru: Journey into the Heart of Ancient Wisdom

Our subsequent journey led us to Peru, where the stunning vistas of Cusco and the Sacred Valley embrace the echoes of Inca and pre-Inca civilizations. We lodged within two distinct intentional communities nestled near the Q'enqo archaeological site, granting us a singular vantage point for our explorations and a deep dive into the rich Incan cultural and spiritual heritage.

As we wandered among these time-worn ruins, the deep connection the Incas nurtured with the earth, stars, and the natural realm was palpable. Adrian found tickets that granted us access to every notable site, and we ambitiously covered nearly all of them on foot, with one exception where we returned on horseback. (Machu Picchu required a separate pass). Each site revealed its unique societal, agricultural, and spiritual importance. An evening at an observatory provided a window into the Incas' sophisticated astronomical knowledge and its crucial role in their society, shaping agricultural practices, religious ceremonies, navigation, architectural alignment, and seasonal planning. Looking up at the planets, we felt a profound humility, touched by the Incas' recognition of the universe's intricate web of life.

Embracing the Sacred: Traditional Master Plant Dieta

Six months later, we ended up doing a completely different trip to Peru. In dense jungle, where the plants breathe ancient secrets, we surrendered to the embrace of a tradition older than memory—a traditional master plant dieta (sama in Shipibo) in this case with Noya Rao, revered as the 'Tree of Light’ or ‘Tree of Life'. Guided by the wisdom of traditional Shipibo healers, guardians of mysteries and mediators between worlds, we embarked on a fortnight's journey into the depths of self and spirit.

In the realm of ascetic practices, the master plant dieta made my previous silent meditation retreats seem like mere introductory sessions. As we embarked on this journey, the modern world’s cacophony and digital shackles dissolved into oblivion. Stripping away our modern comforts layer by layer—electronics, music, almost all forms of communication, all personal care items (including bug spray!), and familiar foods—we found ourselves laid bare. Adrian undertook the challenge of a rigorous five-day fast, a feat I couldn't attempt due to my cancer, though I adhered to a specific diet.

Our dwelling was a sanctuary of minimalism, cradled by the lush jungle's embrace. Stripped of all the trappings of contemporary existence, this environment sparked profound internal exploration. Surrounded by nature's unadorned beauty, we delved into the depths of our beings under the sage and protective guidance of the curanderos/as.

This journey was not for the faint of heart. At its core lay a stark confrontation with our innermost shadows—entrenched patterns of belief and behavior that shaped us. In the echoing silence, devoid of any distraction, we confronted hidden aspects of our psyche. The dieta was relentless, peeling back layers to unveil the fundamental truths of our existence, urging us to confront and transform our limiting beliefs.

What transpired was a profound spiritual communion, a journey that unearthed sacred truths lying beneath the mundane fabric of daily life. Within the jungle's embrace, we brushed against the infinite. Guided by Noya Rao and the ancient rituals preserved by the indigenous guardians of the land, we received profound insights and healing, marking a pivotal moment of transformation and awakening.

The poetic twist? As we journeyed into the jungle's depths, seeking healing for each other, we found ourselves each immersed in profound symphonies of personal transformation, each of us receiving precisely what we needed to navigate our individual paths. Emerging from the verdant embrace of ancient wisdom, I glimpsed facets of Adrian's being that offer profound solace as I contemplate my transition from this world—including a sense of connection and peace deepened by his experience of non-duality, a dissolution of boundaries between self and the infinite.

We are not human beings having a spiritual experience. We are spiritual beings having a human experience. - Pierre Teilhard de Chardin

Revisiting China: A Journey Through Memory and Change

The final chapter in this post is yet another tale of homecoming. The notion of returning to China together had been brewing since our departure in 2013. My frequent work-related visits contrasted sharply with Adrian's brief, solitary layover, a fleeting reunion amidst his broader travels. Over the years, the ashes of Carl, our cherished Beijing stray cat, have occupied a revered spot on his bookshelf and desks, serving as a tangible reminder of our pledge to return them to our Beijing home when the opportune moment arrived.

Exploring Shanghai: A Glimpse into Adrian's World

That opportunity arose when Adrian decided to study abroad in Shanghai last summer, making him one of only 350 US students in China at that time. (Ironically, despite having previously obtained a 10-year tourist visa for him before the downturn in Sino-US relations, it was a tad frustrating to find out he now required a student visa, rendering the tourist visa void).

Visiting Shanghai as Adrian's study term was ending gave me a window into the dynamic world he had carved out for himself—a world far removed from the days when my guidance shaped his footsteps in this land. Immersed in his life, I delighted in meeting his friends, frequenting his favorite restaurants, and soaking in the essence of his new existence in China. Our adventures were threaded with music, echoing his profound love for the art, from captivating orchestral pieces inspired by Studio Ghibli movies to mesmerizing pipa performances by Wu Man and even traditional orchestra performances featuring instruments dating back 3,000 years.

Our adventure took us to Yunnan province, where we delved into the varied landscapes and cityscapes of four beautiful cities. Surrounded by crowds of local tourists, dressed in faux Tibetan garb and capturing each moment on their phones, we often found ourselves as the only foreigners in sight. Seeking quietude, we ventured beyond the frequented paths, embarking on memorable hikes. One such trek to Tiger Leaping Gorge, surrounded by the thunderous sound of waterfalls and the tranquil sanctuary of Kuan Yin's temple—a deity close to my heart—became a moment of profound connection in our travels. (photos).

Beijing: A Return to Familiar Ground

Our journey's zenith was in Beijing, feeling like a return through a gateway to a world we once knew, now cast under the veil of transformation. Navigating a list of beloved spots that Adrian compiled from our time living there (2008-2013), we noted how the city—and indeed, all the places we visited—had changed. Relentless modernization had reshaped the landscape, erasing the charming alleyways, lively neighborhoods and street vendors we used to love. Locations that once held our dearest memories were replaced by stark, modern structures that reflected the sky but failed to capture the soul of old Beijing.

Propaganda, with a focus on Xi Jinping's ideology, and the omnipresence of surveillance seemed to saturate every aspect of life, reaching far beyond Beijing. Adrian navigated this changed environment with ease, skillfully using the WeChat account he set up on a burner phone, thus relieving me of the hassle of reinstallation. This reshaped world was another in which our roles were reversed: where I once carefully planned each detail of our China travels, Adrian now took the lead in managing our logistics. This shift, much like the "final thresholds" mentioned abovfe, appeared to occur instantaneously, yet represented the culmination of years of gradual evolution.

Reconnecting with the Past: Nostalgia and Reunions

Beijing is where we took a nostalgic trip back in time, visiting our old apartment, the school where Adrian accumulated a treasure trove of precious memories, and the very first Beijing office of the International Crisis Group, housed in the expansive China World Hotel complex — the hotel where I also used to arrange stays for VIP guests, effectively turning its lobby into my makeshift office. Astonishingly, it had remained nearly the same throughout the years, down to the distinctive, custom perfume scent filling the air. In those moments, we were swept back in time, enveloped in the warm, familiar embrace of nostalgia.

We joyfully reconnected with old friends, though many had since scattered to far-flung places. Among my Chinese friends, some were entering retirement, and others found themselves in academic or other positions where association with US nationals these days could jeopardize their careers. A particular family close to us had embraced the "lie flat” (躺平) movement's philosophy, while others were quietly planning their exit from the country, their departure delayed by the duty to care for elderly parents. Our reunions were filled with unexpected joys, from catching up with the now-adult children of longtime friends to enjoying memorable encounters with NBA star Stephon Marbury, who has embraced Beijing as his new home.

Reflecting on Change: Navigating China's Current Atmosphere

During our visit to the Sanlitun Diplomatic Compound, our old home, we momentarily forgot we had contacts who could have facilitated our entry. After asserting our history as former residents, we eventually gained access, though accompanied by a police officer. Navigating the familiar yet changed terrain under the watchful eye of law enforcement felt both surreal and starkly emblematic of China's current atmosphere. Despite the officer's cool demeanor, Adrian skillfully persuaded him to take a photo of us in the exact location where we had been photographed a dozen years before. In a rushed moment, we scattered Carl's ashes in the grass before leaving, a far cry from the thoughtful and intimate ceremony we had envisioned.

2011 (left) and 2023 (right): the difference in just a decade! Original article: https://www.beijing-kids.com/blog/2011/10/07/just-the-two-of-us-the-kleine-ahlbrandt-family/

Reconnecting with old friends evoked deep feelings. One dear friend—a human rights defender I first met during a visit with Mary Robinson to Beijing in 2001 — had endured detention, intimidation, and police brutality before redirecting his energies away from activism for his family’s safety. Nevertheless, he along with all Chinese citizens, remains caught in the expansive net of the country’s advanced digital surveillance system. Within this environment, even innocuous words that bear a phonetic resemblance to sensitive phrases can lead to exclusion from chat groups and also the entire WeChat platform—a critical tool for navigating daily life in China, essential for communication, social networking, and managing daily necessities.

This friend urged us to consult with a distinguished Traditional Chinese Medicine (TCM) doctor, a long-time acquaintance whose life and career were turned upside down by his involvement in Tiananmen Square. Despite the hardships of imprisonment and the sacrifices made, he has unwaveringly continued his TCM practice. His wisdom, gentle demeanor and resilience deeply impacted us. Upon entering his office, we found him engrossed in studying German, a pursuit he had dedicated years to mastering. After learning about my condition, with great humility, he advised us to seek out a TCM specialist who focuses on liver conditions, recommending two of the country's top experts. (The account of that remarkable visit is a story unto itself.)

What deeply moved us was his immediate concern for our friend's well-being. Upon seeing him, his first question was, "Why are you still here?" echoing with urgency. Our friend explained his concerns for his elderly parents and his future aspirations to move abroad, highlighting the stark challenges faced by those living under such a restrictive regime.

Diagnosis Disclosure: Navigating Cultural Silence around illness and death

After a prolonged absence from China, the task of sharing my illness with several dear Chinese friends was daunting, as it added a layer of gravity to otherwise joyful encounters. I had wanted to inform several of my them in person, aiming to soften the impact and shield them from worry. But this trip marked my longest time away, and having raise such difficult news added a layer of gravity to otherwise joyful encounters.

However, my aversion to the cultural silence surrounding illness and mortality is something Adrian understands well. I’ve tried to model for him that there's profound strength in vulnerability, that there's honor in facing reality head-on, even in our most exposed moments. Furthermore, this was an important opportunity to lessen the future burden on him of having to explain my condition posthumously.

For those unfamiliar with the film, "The Farewell" by Lulu Wang, which illuminates the intricate dance between concealing and revealing the truth of illness and death, I highly recommend it. (The original Chinese title "别告诉她," or "Don't Tell Her," offering a clearer insight into its theme.)

In the end, the moments in which I disclosed my illness during our visit, it unleashed a flood of tears and heartfelt support for both me and Adrian, blending heartache with profound connection in our reunions.

Having Adrian by my side as we informed our beloved ayi of my illness revealed the quiet depth of our shared journey. It wasn’t just about finding the strength to break the news, dampening the brief time we had with those we hold dear. It was also about watching Adrian seamlessly step in when I faltered, unable to find the Chinese words through my emotion. That moment underscored more than our love—it was a testament to our shared commitment to facing life’s hardest truths with honesty and grace, even when words fail.

Orbiting Ambitions: Science Diplomacy

Imparting a legacy imbued with compassion and service also holds deep significance for me. So observing Adrian’s growing interests evolve into science diplomacy and outer space policy brings me unparalleled joy. Adrian's fascination with the cosmos has profoundly shaped our explorations, drawing us to observatories, museums, and exhibitions that celebrate the universe's mysteries at nearly every stop on our journey. This shared adventure has transformed me from merely watching from the sidelines to actively engaging alongside him, diving into his passion. Witnessing his child-like wonder paired with his maturity and intellect as he elucidates the complex physics and astronomy behind various phenomena is a true gift.

Lost in the Milky Way's embrace: Stargazing at Mauna Kea

China's aspirations for a permanent lunar base and its efforts to integrate space exploration into the daily lives of its citizens were evident in every stage of our China trip. Exhibitions, displays, and abundant propaganda celebrating China’s space ambitions were everywhere, just after Adrian had finished a relevant research project.

We spent hours in an exhibition in Beijing’s 798 art district—more a bold showcase of China's space capabilities than art. As we left we decided to drop by the North Korean Art Studio associated with the UN-sanctioned company, Mansudae. Despite my multiple recommendations to the Security Council for its closure during my time on the UN Panel of Experts, it remained open—a reminder of how sanctions on the DPRK often proved more symbolic than effective.

Here, amidst distinctly North Korean staff and their wares, Adrian found himself unable to resist adding to his collection a few propaganda posters featuring the nation's ICBMs, naturally paying in cash to avoid any unwanted attention. The whole experience was a way for us to reminisce about our time in that enigmatic country, which Adrian last saw when he was 11 (when he made this adorable dispatch from Rason).

These snippets offer just a glimpse into some of our travels. I’ve documented more of our adventures on the road here and here. We also have forthcoming plans for a coral conservation diving expedition to Tubbataha, to see the Total Solar Eclipse in Texas, and to attend our favorite camp in Burning Man where we will turn the Playa dust into glass for jewelry to gift. These plans are of course contingent on health — all promising even more shared adventures ahead.

 Conclusion: Embracing the Legacy of Love

As I reflect on the past three years of motherhood and illness, marked by challenges, unexpected joys, and profound changes, I find myself in awe of the journey that has unfolded.

Adrian and I have not only traversed physical landscapes across the globe but also navigated the emotional and spiritual terrains of our inner worlds.  These experiences, born from the shadow of terminal illness, have highlighted the richness of our bond and deepened our understanding and love for each other. In preparing Adrian for a world without my physical presence, I inadvertently prepared myself for my transition with grace and peace. The paradox of facing a terminal illness is that the best preparation for leaving is to fully embrace life—removing all obstacles to love. While it seems like this should make us more sorrowful about departing, it instead brings peace and gratitude for a life deeply lived, where love becomes the ultimate source of meaning and fulfillment.

Adrian's evolution has been remarkable.  The nihilism he embraced when I was first diagnosed, has led to a journey towards an appreciation of life’s inherent mystery and allowed him to develop an embodied sense and understanding of non-duality while being firmly grounded in his life. 

In the end, love endures, transcending the limitations of our physical existence and connecting us in ways that time and space cannot diminish. The journey that unfolded for Adrian and me, unexpected and unwelcome as it was, has been an incredible gift. It has taught me that the essence of our being is not diminished by disease or death but is made more luminous by the love we give and receive.

In facing my own mortality, I’ve sought to equip Adrian with the tools to navigate the complexities of life with grace and courage.  Initially, I carried the notion that it was my duty to 'prepare' Adrian for my passing. Yet, I came to understand that such preparation is a nebulous and perhaps even misguided aim. Losing a parent is a profoundly unique journey for anyone. But I have learned that in helping him to cultivate a strong foundation of support, wisdom, insight, he has prepared himself to be  able to forge ahead in life, despite the inevitable heartache our physical separation will bring. We have both found our footing, ready to face whatever the future holds. All will be well.

In the end, our story is one of triumph over the shadows cast by illness, a narrative woven with the threads of love, a legacy that transcends the confines of time, and a reminder of the beauty and resilience of the human spirit. Though the path ahead is veiled in uncertainty, my heart is buoyant with the belief that Adrian is well-prepared to embrace all of life’s complexities with wisdom, empathy, and an unyielding zest for life. And with my heart full of gratitude for the moments we’ve seized, the lessons we’ve learned, and the love that has guided us through, I am ever thankful for the gift of each day and the promise it holds for Adrian’s bright future.

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Prompts for further reflection

These questions are designed to help you further explore the themes of legacy, love, resilience, and the bonds that define our human experience.

1.     How can we approach the concept of preparing for our own departure? What actions can we take to ensure that we leave behind a legacy of love and wisdom that will endure beyond our physical presence?

2.     Considering the theme of 'bonds' in the context of terminal illness, how do relationships evolve and deepen in the face of such adversity? How do these connections enrich both the individual facing their departure and those who remain behind?

3.     Reflecting on the moments of connection between a mother and her son in the essay, can you recall a similar experience in your own life that significantly influenced your perspective or emotional journey?

4.     The story speaks about confronting fears and embracing life's uncertainties. How have your personal fears influenced your life decisions, and what strategies have you employed to face them?

5.     The post explores the themes of spiritual awakening and personal healing. Have you ever had a transformative experience that reshaped your understanding of life, death, or spirituality? If so, how did it impact you?

6.     Navigating terminal illness often involves finding balance between holding on and letting go. How do you personally find peace amidst the tension between these two states of being?

7.     The concept of interconnectedness is central to the narrative. How does recognizing our interconnectedness with everything around us influence our approach to life and our relationships with others?

8.     The post illustrates the challenges and unexpected joys of global exploration amid terminal illness. How does travel, or the exploration of new cultures and landscapes, contribute to our understanding of life, death, and what truly matters?

9.   Reflecting on the idea that "in the end, it is love that endures," how does this resonate with your own experiences of grief, love, and the legacy we leave behind?

Kindly share any of your reflections, or any other thoughts you might have in the comments!