The course of our lives is determined by how we react
– what we decide and what we do – at the darkest of times.
- Daisaku Ikeda
I happened to watch the documentary End Game on Netflix late one evening while in the hospital late summer of 2019. I rarely watched any movies at that point in our journey. Most of my time was spent closely watching my husband Neil as he slept or woke or on occasion spoke. Sometimes we’d watch Stephen Colbert, and Neil would chuckle but that was growing increasingly rare. Otherwise I’d sleep, catching up on all the missed sleep of that summer I spent on the convertible couch-bed sleeper in our hospital room with the breathtaking view of downtown Dallas. Over the years, we had come to affectionately call the new swanky hospital Château Clements, our home away from home. We had not been able to travel at all after Neil’s second cancer diagnosis of treatment-related leukemia, and if one word could ever sum up my husband it would be wanderlust. Neil had already traveled much of the world in his twenties and spent much of his career in tourism. Being bed bound seemed to be a cruel and unusual sort of predicament that cancer brought with it – one he still found ways to transcend in his nightly dreams of phenomenal travels. We spent many nights at UT Southwestern’s fancy new flagship center on the 11th floor of the BMT unit – indeed, so much time that the people working at the downstairs Starbucks would often mistake me for an employee. Even when I shared with them that I wasn’t one, they would sometimes give me the discount anyway. Such small kindnesses abound in places like that.
The movie spoke to me on many levels. I’ve always been interested in the thresholds between life and death, having obsessively read Rainer Maria Rilke, the great poet of life and death, for years in my youth and throughout the rest of my life and studied – or rather rallied against – the Orpheus myth. I could never quite accept traditional readings of the myth and sought out alternative endings. I also learned massage therapy, healing touch, spiritual healing, and energy work, too, wondering whether the boundaries of my self end and the other person’s start. I trained and volunteered as a hospice volunteer, listening to people’s stories right before their passing. Somehow I seemed to have always sensed death was a companion, and it’s as if I have always been preparing for my encounters with death, and perhaps especially for the moment of Neil’s passing at the very same moments I would also pray wholeheartedly for his long life. All life, it seems, is indeed our one great preparation for death.
Death was for so many years our silent companion who fortunately gave us precious added time together. Over the course of nine years, my husband skillfully navigated his way through his stage IV multiple myeloma diagnosis, a stem cell bone marrow transplant, his recovery back to life, and one near death experience after another, landing him in the hospital in October 2017 with what ended up being treatment-related leukemia caused, I imagine, by the one new medicine that helped prolong his life. Life is strange that way. No one was a good match for him. He was altogether unique that way. His birth name Chandranil, when translated, means ‘blue moon,’ and his life was precious like that–a ‘once-in-a-blue-moon’ kind of life. His leukemia in those last years, months, and days before he relapsed and passed took him through endless tests, spinal taps, bone marrow biopsies, and four serious infections: flu, e.coli, strep, and an insidious bacterial infection. He faced each one with his own brand of courage, and he never seemed quite ready to give up. On difficult days when I feel like I cannot go on, I remember his resolve to live and his deep love of life, even when it was so difficult for him. From our Buddhist practice, we understood the great good fortune that comes from prolonging one’s life for just one more additional day. So, we welcomed every day, every extra moment.
Neil’s doctor was quick to suggest hospice, months before we were ready, and even in the end, hospice wasn’t the ultimate choice. That surprised me. It’s one thing to see and experience death from a distance. It’s a different thing when it’s up close and personal, right in your face. He headed home, with a plan to return to the community hospital where his treatment began. The hand-off was poorly handled and many things were missed, all of which weighed heavy on my heart till I was finally able to let it go. The EMTs who had helped us so often helped Neil one final time and brought him to the community hospital where surrounded in love, bathed in light, and with two of the kindest caregivers, Neil passed peacefully in the early hours of October 1st.
Neil’s big brother Indranil and I were both with him, and we had time with him in the hospital. The room was peaceful, illuminated by light. Clearly, something sacred and deeply divine was present. It wasn’t a grand spectacle, just simple, and in its simplicity stunning and profound. He looked so peaceful and clean in the blue hospital gown that looked so much better on him than the garish golden orange fall risk gowns that he had had to wear for so many months, which I felt always clashed with his complexion.
I put my hand on his chest and tried to soak up that feeling as body memory into my bones. A gesture and touch so familiar to me from the many mornings I would do that—put my hand on his chest and wake him gently with a kiss. A simple gesture I sensed I’d sorely miss. We spontaneously created our own ceremony. I recited passages from the Lotus Sutra, and his brother played parts from the Bhagavad Gita.
Finally, I turned to the nurse and said, “There must be papers I need to sign.”
She shook her head, saying “No, we just need the name of a funeral home.”
“Aria,” I said. I loved that the name of the funeral home made this movement sound like a song. It turned out that that operatic-sounding funeral home was under renovation, and Neil’s body was taken to the much funkier and freaky Addams Family-esque funeral home that was far out of our way. We found ourselves there in the plush black and velour parlor that seemed straight out of horror films as we met with Mandy. Going through the big book menu of funeral options with increasing prices, we knew to keep it simple. That’s what Neil wanted. He wanted to be cremated. I had never even thought of being present at the cremation and wouldn’t have considered it had Indranil not insisted on being there for his brother’s cremation. Initially, I recoiled from the idea but then I thought of that last scene from the film End Game – the scene with the beautiful flower ceremony. It would be perfect, I thought, and I immediately inquired whether we might be able to bring flowers. “Of course,” Mandy responded.
The morning of Neil’s cremation, it poured nonstop as we made our way to what turned out to be a small, unmarked space in Arlington’s warehouse district, a rough place and creepy in its own right.
We had soaked the stunningly beautiful pink, yellow, orange, and red rose petals in sweet orange, lavender, and frankincense essential oils and brought them with us in bags. Neil always loved nice smells and fragrances. At his celebration of life, we brought a box of unopened, nice colognes for the men and young men in the audience. Their own party favors. My mother and I clutched the bags filled with flowers in our laps, as my father drove silently through the pouring rain.
We got there early and sought out a place to eat breakfast. Nothing was open save for the Waffle house. We found a spot at the counter and settled in, putting our soaked coats and wet umbrellas away. My parents and Indranil ordered eggs, and I ordered waffles. There was no question about that. Neil loved waffles, and the one memory I have of going to a Waffle House with him was from our first year together, when we drove through the night to get to Columbus, Ohio to see my sister and her family. We arrived at their place at 4am, before any of them were awake yet. Apparently their doorbell hadn’t worked in years, and pounding on their door and calling them on their cellphones also proved futile, so Neil and I headed to the Waffle House at 4am and ate waffles. I remember that as I watched the others dive into their eggs. We were all tired, hungry, and worn out. Somehow these eggs seemed to turn into manna.
My sister arrived from her hotel – the very same sister from Columbus with her husband Todd who comes from a long lineage of undertakers, something we had all forgotten until that morning when it was wildly soothing to have him there. Call Baker, Baker, the best undertaker was their family motto for many years until his father stepped out of the lineage to become a history professor. Neil’s ‘little brother’ Samarth showed up, too, with the most beautiful red rose garland, sandalwood, and water from the Ganges, which Neil’s brother had requested. Samarth wasn’t actually Neil’s brother but he was in spirit and also in the ER when visits were restricted to family members. I had forgotten this white lie at times when the nurses on repeated visits to the ER would ask me about Neil’s little brother. Oh yeah. Whoops! Samarth came on so many nights, especially that one night Rachana his wife had come to visit Neil, asking me about when he’d be able to come home. She’s the only one I told the truth. It was a truth I hadn’t even come to yet, the truth that had still eluded me. It was the truth that the doctors and caregivers were trying to get me to see and accept outside Neil’s hospital room, when the nurse practitioner told me they didn’t think he’d make it through the night.
“He’s dying, Rachana.” I spoke through tears as she inquired about when he might be able to go home. Still to this day, the photo I took as she turned to Neil and embraced him wrecks me and brings me to tears every single time. There are worlds of experience there. The sister he never had, looking up to her brother, comforting him. Her grace and her love, so vast and so beyond any grasp. When she left, she said, “I’ll send Samarth.” And he came, as he always did, even after his long day at work, after his long evening with his kids, and he stayed up all night chanting at Neil’s bedside. I awoke at 2am to see them talking, as if nothing were wrong. I felt it was another one of Neil’s miraculous “I am Lazarus come from the dead” moments. Samarth was stunned, as I was by Neil’s sudden recovery, as well as his nevertheless unexpected death.
My friend Joanna sent me a Rilke quote once she heard about Neil’s passing – an unexpected gift. It’s from one of Rilke’s particularly poignant 1923 letter to the Countess Margot Sizzo-Noris-Crouy, in which he writes:
The great secret of death, and perhaps its deepest connection with us, is this: that, in taking from us a being we have loved and venerated, death does not wound us without, at the same time, lifting us toward a more perfect understanding of this being and of ourselves.
I am not saying that we should love death, but rather that we should love life so generously, without picking and choosing, that we automatically include it (life’s other half) in our love. This is what actually happens in the great expansiveness of love, which cannot be stopped or constricted. It is only because we exclude it that death becomes more and more foreign to us and, ultimately, our enemy.
In the same letter, Rilke admonishes against our attempts to deny death, which only take away from all great experiences of life, saying:
Our effort, I suggest, can be dedicated to this: to assume the unity of Life and Death and let it be progressively demonstrated to us. So long as we stand in opposition to Death we will disfigure it. Believe me, my dear Countess, Death is our friend, our closest friend, perhaps the only friend who can never be misled by our ploys and vacillations. And I do not mean that in the sentimental, romantic sense of distrusting or renouncing life. Death is our friend precisely because it brings us into absolute and passionate presence with all that is here, that is natural, that is love… Life always says Yes and No simultaneously. Death (I implore you to believe) is the true Yea-sayer. It stands before eternity and says only: Yes.
That early morning when Neil died, I held his hand and said “Yes” to his death, assuring him not only that he was so loved but that of course, he should go. There was no arguing with the bright and brilliant light. A good friend calls it “Erika’s big Yes,” which seems to also encompass my deep desire to continue to live as fully and become as happy as possible in spite of Neil’s death. And in that early morning, we entered the crowded strange cremation space, with its narrow corridor, uneven floor, spooky security cameras, and eerie, uneasy feeling. It’s clear not many people came to this place. This creepy place became the Buddhaland, made so sacred not only through our love, our devotion, and our prayers to Neil’s eternal life, but also so precious thanks to the fragrant flower ceremony shared in End Game.
Wrapped in a beautiful rose pink cloth that had meaning for us, covered in bright pink, yellow, red, and orange flowers suffused in fragrances and scents, we shared our final goodbyes, shed our tears, said our prayers, and expressed our good wishes for his safe travels. We tucked a little blue Buddhist prayer book with the recitation of the Lotus Sutra under the beautiful garland we adorned him with. My brothers-in-law thought it was his passport, which makes me smile. I know how hard Neil fought for his US passport, and I know the prayer book will guide him well in his future travels. Resting my hand on his chest once again, I said my goodbye to the body I knew so well, that ever so familiar place, and breathed in the memory of which still comforts me. My last memories of my so beloved husband are ones filled with color and fragrance. I am so deeply appreciative for the original inspiration shared with me in the movie – the brilliant transformative power of a simple flower ceremony.
This turned the tide for me. It’s allowed me to bow to Neil’s great destiny. My lasting memories of Neil’s fragrant flower cremation ceremony, along with his celebration of life that we held a few days later, brings me such comfort, joy, and peace, not to mention the deep reassurance that all is well in life and death, in all the Yes’s and No’s, and the ineffable in-between that holds us in place. Neil’s death in the end was made great. For that, I remain eternally grateful.
May all those who lose loved ones come to know similar grace and peace amidst their heartbreak.
Little things aren’t so little. The simple act of lending flower’s delicate power to a scene that might otherwise feel brutal turns the experience towards beauty. Life and death are that exquisitely sensitive.
It is often the subtlest shifts in frame that open up new worlds, and for Erika finding it in her heart to say “yes” to her beloved’s death shifted so much of the experience. Death was no longer a foreign force happening to them, but a deeply misunderstood aspect of life playing out. Life was happening, here, amidst his Great Decline. With that, they got to feel part of something more cosmic than tragic. More a participant in what must be; less a victim.
Erika is kind to remind all of us how different it is to experience death than to ponder it from a distance. We should all keep that in mind and make room in our hearts for going off script when we’re standing at the horizon’s edge. Dying well requires dexterity.
Thanks to Erika too for pointing out the profound kindness and beauty that plays out quietly in hospitals and in healthcare in general. There is so much to criticize in the healthcare system, just as there’s so much to admire. Navigating the system in a savvy fashion might require a white lie now and again—as with Neil’s “little brother” visiting—but the people laboring within that system tend to know that a wink is sometimes required to protect the humanity underneath all that technology and regulation.
-BJ Miller, MD
If you’re arranging a funeral with a cremation, attending one as a guest, or simply curious about how it all works, this will help.