Evolution:
We are survivors of immeasurable events
Flung upon some far reach of land
Small, wet miracles without instructions,
Only the imperative of change.
-Rebecca Elson
Almost exactly one month ago, after a long series of immeasurable events, Viral and I moved back into our sweet home in Belmont. For the first time since the beginning of the year, it’s just the two of us in this little bird’s nest of a house. And I can say now, what I couldn’t say with conviction for a long while: We are doing well. We are continuing, day by day, to heal. It took an army of angels to get us here. You, reading this are likely one among them. Invisible forces hold the stars and our lives in place. Through silence and across vast distances we know we have been held by so much more than we can fathom. Thank You. For all of it.
In the two and half months since his discharge, Viral has been steadily getting stronger every week.His short term memory, while still affected, is responding beautifully to therapeutic interventions and the healing passage of time. His last bone marrow biopsy in August showed no indication of MDS, and he has been transfusion independent since early July. Those seeing him now cannot believe how well he looks and sounds. How simultaneously unchanged, and also transformed he is. On my end, after completing chemo, two surgeries, and starting on hormone blockers (that I will take daily for the next five years), I’m now a third of the way through radiation treatment, with Viral as my charioteer. Each morning when I look at him and consider how far we’ve come, it seems nothing short of a miracle.
Getting to this point has not been easy. Witnessing what Viral endured over the course of his hospitalization brought me to my knees day after day. In the face of the precipice we were teetering on, my own cancer journey, symptoms and side effects faded to little more than a side note. In the underground tunnel of that time, nothing mattered more to me than being by Viral’s side, trying to tune into every dimension of his treatment process, trying to find the levers to bring him ease, ensure his best chance of recovery, and honor his deepest aspirations. It was also a time of being chased by my own demons and doubts. Of being riddled by my fears, and freighted with choked-back grief. I sat down to write this update dozens of times, only to find myself immobilized, and unable. It was all too close, too stark, too shrouded by strong and wordless emotions, and far too little sleep. Looking back at that stretch of the road, I still find myself to a large degree, dumbstruck.
But I do want to say this: the kindness, quiet heroism, and humanity of the hands- the hands of family, of friends, and of strangers– that served Viral and I in this time will forever hold my heart in a colossal debt of gratitude.
After two and a half months in the hospital, Viral was discharged on July 15th. At the time he could walk with support, but was still on heavy duty IV medications [that I learned, with great trepidation, how to administer through his PICC line.] He was barely able to eat, was hardly sleeping, had trouble remembering the year, where we were, and what exactly was going on. His short term memory was still profoundly impacted, but his sense of gratitude and his trust in the ultimate laws of the universe were unshaken. He moved into the spacious multi-level home we had rented in Portola Valley and began the difficult work of navigating daily life in the wake of a bone marrow transplant, four serious infections, and the loss of working memory.
One week later, after more than seven months of selflessly accompanying us through the multi-dimensioned intensity of Viral’s hospitalization and my chemotherapy treatments, Nipun and Guri transitioned back to the many other demands of their lives. The baton was gracefully passed to my sister Deepa, her husband Ramesh, and our seven-year-old niece Dhira (the other love of my life.) This healing trio, who flew in from India to be with us, could not have landed at a better time. Their unassuming competence, care and closeness worked a slow and quiet magic on my ragged spirit.
Two weeks after Viral’s discharge, I underwent a double mastectomy. The next morning, upon waking Viral began walking towards me, stopped part-way and then fell backwards all the way to the ground. It was a miracle that he was not injured. But we found ourselves back at the Stanford clinic multiple times that day, and almost every day of that week, and the next and the next. I remember those initial days as a daze of love and pain, laughter and tears, fierce fragility and fiery strength. Like the period of hospitalization had been, these early weeks after discharge were full of profound paradox. Full and empty. Surrounded and solitary. Poignant and playful (as life under the same roof as a precocious seven-year-old is wont to be). Then in mid-August I learned that the margins of the removed tissue were not clear, the very next day I went under the knife again. And something shifted indescribably. In that liminal state between sedation and waking, I found myself chanting. Bowing to the divinity that takes such dazzling and destructive forms, that dances in each atom and embeds a marvelous music even in the heart of the mundane, and the seemingly monstrous. I felt in those moments, fearless and grateful, and willing to go on this divinely dark, and (by definition,) ambiguous adventure.
In the four weeks that we have been flying solo back in our own home, Viral has contracted two more infections and has had to navigate among other symptoms and side effects full body rashes, neuropathy in his feet and a sensitivity to sunlight. During the first year after a bone marrow transplant when all immunizations have been wiped out, and as immunosuppressants are tapered, the risk of opportunistic infections and GVHD flareups come with the territory. Patients and their caregivers must learn to be vigilant without being hyper-vigilant. Disciplined without being obsessive. Cautious without being fearful. Dancing on the right side of those lines while we were both in treatment, and with the added complexity of Viral’s short term memory loss has been challenging and, as Viral would say, evolutionary.
While he has been at his most tender, vulnerable and receptive edge, I’ve found myself needing to be more practical, organized, clear and calm than I’ve ever been. In some ways we have found ourselves switching places. And now we are learning how to dance in our new shoes, leaning into what this phase of the journey demands of both of us. And as always he is the more graceful and gentle one. Even in his most debilitated state in the hospital, even at the height of the brain infections that turned his world (and mine) upside down, he was always the one person I knew who could understand, at the deepest level, what we were going through. Even when he didn’t know what decade it was, or what continent we were on, even when his seeming lostness deepened mine, he was always my compass and guide. Walking this labyrinth with him feels like the privilege of many lifetimes.
Here are a few windows into his state of mind and heart during those fevered, other worldly weeks in the hospital…
Does it take a lot of energy to have to reorient yourself so often, given the gaps in your memory?
Viral: For me it’s not energy to reorient — that’s not the manifestation, as much as knowing I see a partial picture in this moment. When you think about it, that is always the case but there is a sort of a threshold up to which you don’t feel comfortable with the gap in the information that you have and beyond which you feel comfortable enough to figure out the rest of the gaps. For me right now, it’s not that severe. It’s like a door in the night — you can barely see the outlines of a door, and you don’t quite know what’s behind the door. There are some assumptions that there could be something valuable behind the door, but maybe also some concerns around, how do you really know whether the door is really worth opening?
Have you felt despondency or dejection in this period?
I think versions of it in terms of tiredness, intimidation and just feeling like “whew” and also just questions about resourcedness. In the field of different types of experiences these things are there in the field. Generally there is a lot of resourcing and so I don’t feel spun around in it, and it’s made me think what creates those circumstances. I don’t know. But you can imagine how it would be without that anti-spin force that is also at play. So the spin tendency will come in — fear, uncertainty, disconnection- whatever it might be but there is also this strong counter force — counterforce may not be the right word — the presence of another force and it is somewhat mysterious how the insertion of that other side of the coin or whatever, becoming aware of that, it lets you see differently.
How would you describe this time?
First of all, it feels like waking up out of a long and deep sleep. But also, it’s iterative, it’s not complete, and it keeps happening in a way. What feels constant in this process is presence and love. And by presence it’s kind of like, something so familiar you can’t be confused that it’s anything but your honest truth of being. And love is an honoring of the intensely interconnected and interrelated reality of an increasingly evolved community. And it’s not just community– there’s a deeper point there about the inner and the outer. It’s not just about community manifesting outside it’s about realizing that sense of community inside.
What’s your feeling state right now?
Relatively peaceful. Little tired. Kind of taking in new information, trying to connect some new dots without getting fixated on connecting too many dots with limited information. Trusting in you and the context to reveal itself as these moments go by.
How do we work through this time, you and I, given all the challenges?
This is a long path and we can’t get too paranoid about it. We have to work with what’s in front of us in each moment. Know that we’re not seeing the full picture and that we’ll never actually see the full picture and that’s okay. To just fully act and to fully be with sincerity and compassion. Your evolutionary journey will continue. You’ve got so much love in your heart to offer and you keep offering it, and that’s part of your path. I believe we control the pace of the evolutionary journey. The universe is kind that way.
You are my partner in all adventures and all paths, and I think it’s safe to say this is not the first or the last path we will be traversing. We just do it with a sense of togetherness and sincerity and love. The circumstances will keep evolving. There will be seamless times and challenging times and all we want to do is keep growing and loving through it all together. The question is going to be, how do we smile through it? How do we connect through it? How do we grow through it, work through it and love through it, with interconnectivity with others, and with humility, gratefulness, and courage?
The Poetry Of 