Flashbacks from Viral’s hospitalization, from those tenuous days while he was being treated for meningitis and encephalitis alongside two other infections.

Day 48

Though I have hardly spent any time in it, the picturesque home we are renting not far from the hospital, is a home after my own heart. Full of art, light, comfy seating, garden views and bookshelves. So many bookshelves! And such a wonderfully eclectic assortment of books. The Phantom Tollbooth, and The Great Brain next to Ovid and Outliers. Amanda Gorman’s poetry collection, “Call Us What We Carry,” next to Chanel Miller’s, “Know My Name.” And on one shelf, this slim, nondescript book: “Creativity From Constraints: The Psychology of Breakthrough.” I often judge a book by its cover. This one is unspectacular. Breaking my pattern I pick it up anyways and put it in my bag to read at the hospital. Later, while Viral takes a daytime nap after a very interrupted night, I open it. This book, I soon realize, does not deeply interest me. But I am intrigued by its theme, and a few lines in early chapters…

“The more constrained the solutions path, the more variable, the more creative, the problem solvers.”

“Operators in well-structured problems with single correct solutions, like directions to memorize, calculate exactly or copy correctly, do the opposite of constraints for creativity. They preclude the surprising and promote the expected.”

“I like to think of constraints for creativity as barriers that lead to breakthroughs.”

I have written, in a very different context and time, about the power of self-imposed constraints and their relationship to breakthrough solutions. But right now that is of no consequence. It strikes me that I have never felt more constrained or less creative than I have felt this year. What we are in the middle of is a very ill-structured problem, and there are no easy or clear solutions. It occurs to me that I might well be missing an important boat here.

When Viral wakes up, I have some questions for him. As has become the norm of this time [in the early days of his treatment for multiple brain infections,] he picks up the thread wherever it’s handed to him. He does not hesitate before answering and there’s a degree of clarity and awareness in his responses that I find astonishing.

With chemo and other kinds of strong drugs there can be a dampening of life force at every level of one’s being. I know this first hand- for a time it extinguished any sense of vibrancy or enthusiasm I had. You’ve been on a far more punishing regimen for so long now. How do you navigate this?

What’s the creative response to more and more limitations? When there’s so much sweetness and support around, that inquiry becomes easier to imagine seeding and playing with. “I want to just try this” Even simple things like — the pros and cons of, “I just want to lie down” vs. “I want to kind of build off of where things are in conversation, just for the sake of exploration and satisfaction and value.”

[This is part of his gift — to attune to what he is receiving, even in the midst of extreme challenge. And to live creatively from that simple abundance.]

What do you feel the satisfaction comes from?

Something that has not been quite met yet, that finally gets met in anywhere ranging from a small to a big way. 

[“Something that has not been quite met yet, that finally gets met…” The poetic quality of his articulation in this time mesmerizes me. He is not speaking the way he normally speaks, and yet he has never sounded more himself.]

And where does the value come from? Is it from the experience itself or the learnings within it, or–?

Maybe it’s the juxtaposition of the two, the experience itself and then you have some fresh inclusion. 

[“Some fresh inclusion.” How I love that way of describing learning. A newness that we take into ourselves.]

I don’t want to romanticize any of this — what you are engaging with in terms of the memory loss is hard and it’s gritty. Like being lost in the wilderness.

Even this whole thing of– in this moment what am I doing? And what was the conversation about? [Those gaps] can be jarring, or it can be like being shaken up in a good way. In a fresh way. 

How do you find yourself orienting within the wilderness experience of it all?

There’s just a lot of trust and a lot of immersion.

What do you mean by immersion?

In a way the best choice is to immerse. It’s not the only choice, I mean you could play it differently. 

How do you immerse? Is it a non-resistance? 

That may be the best way to put it — but I think there’s also the creative act as well that’s possible, it may feel appropriate to explore it from that angle.  You don’t necessarily have to squeeze in.

[I love how he has just framed this. You don’t have to passively fit yourself into reality like it’s a box with a fixed frame. You can enter and act on it in mutually creative ways.]

Like — what could be mine to do here?

Yeah, yeah.

Almost like you’re the artist but you’re also the canvas?

That’s a brilliant way to put it. 

***

‘In art, truth and reality begin when one no longer understands what one is doing or what one knows, and when there remains an energy that is all the stronger for being constrained, controlled and compressed​.”- Henri Matisse

Matisse would know about creative constraints. Complications after surgery for cancer nearly claimed his life, left him bedridden for months and eventually confined him to a wheelchair. In this time he developed his distinctive cut outs technique, a style of collage making that he called, “painting with scissors.” The whimsical pieces he created in this style are among the most admired and influential works of his entire career.

With Viral, in the hospital during the daze of these days I see some parallels. He no longer knows the things he used to know in the same way he used to know them. And there is an energy in him that is “all the stronger for being constrained.” It burns in his eyes, I can feel it under my fingertips when I touch him. I hear it in the quality of his words when he answers certain questions. In conversation he is making cut-outs of his own in this time. And to me, they are distinctive and invisible works of art.

He is also continuing to make actual art. Simply, unselfconsciously and with no pre-meditation. The themes and his unpacking of them make me wonder what his deeper experience of this time is. It feels like he is in rich contact with something beneath the surface reality of this intensive hospital stay.

What does this painting evoke for you?

Viral: Opportunities of the heart: even where things are blank or unclear there is the gift of being able to see through the opportunity frame of the heart . Blockages of love: there is some paradox to that. One simple thing is there is no blockage of love when love is at the center of things. Versus, when it’s not, things have different flows. It seems like maybe there are times when there’s a deeper inspiration underneath that is ready to flow into the space of love, but you just miss the window. Then it’s like, “Okay I might have missed some window — but now I’m onto my next window and it may look different.” An opportunity of the heart is something that is going to open up your heart in a different or richer way, for yourself and for other people. I think the potential is there for anyone at any time. The only question is, are the conditions there for you to genuinely connect to the potential. Try and experiment a little bit and see what kind of nourishment comes from that. And it may not be there, which is fine. Opportunities of the heart and blockages of love — they both exist on the stream of awareness, and you want to be aware of both. And overarching it all is the connection to principles. 

What does this piece that you just created, bring up for you?

There are all these interplays going on constantly. And with certain kinds of presence and the eyes to see, some greater order reveals itself in a way that adds meaning. Expectedly or unexpectedly. Though always more “interconnectedly” than generally would have been clear or apparent. Our holding capacity, our volume as individuals is less than the power of the exponential. When interconnected forces can be together, there is that kind of power magnification.

***

What would you like me to write about next?

[He strokes my cheek gently] “Write what comes to your heart you beauty-pie.”

I have no hair, no eyebrows and no eyelashes right now– I’m hardly a beauty-pie.

But those chocolate brown eyes are still the same.

How do you always know how to make me feel better?

I don’t know that I always do. But I see your goodness and it’s reflected in my goodness. 

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?

We are counting our blessings, and in this time I am counting so many things that a few short weeks ago I wouldn’t have known to include. Viral is walking without a walker. He is able to stand at the sink to brush his teeth. He can take a shower, sit on the sofa. He can bring a cup to his lips without shaking.

The doctors and nurses are well-pleased with Viral’s swift progress. We’re relieved he is no longer in acute pain. There is a sweetness to this time. Though there are still many unknowns, much complexity to navigate, and still much ground to be covered before we can consider a discharge date, there is too, a quiet sense that he is held. That we are held.

Above is a diagram created as a quick way of orienting Viral (and myself) to what has happened, and what is happening in this time. He was having to re-adjust multiple times a day to suddenly finding out he is at Stanford, post-BMT, navigating a host of debilitating infections. At some point we were getting lost in the thicket of complex treatment details that his memory has temporarily lost access to. And it was draining his energy. Every time the teams of well-meaning specialists burst into the room with their routine questions and jarring updates (peppered with the intimidating names of multiple drugs, advanced tests, and disease details,) we’d watch Viral valiantly marshal his limited physical resources, and his remarkable internal ones, to try and integrate and respond to everything they were sharing. It would unsettle him in subtle ways, not to be able to do this, and each time he would be left trying to sort out all the missing pieces.

It struck me over and over again, how his focus in all of this was on trying to support whoever came into the room. He wanted to be in meaningful connection. He wasn’t overly interested in, or concerned with his experience as a patient. Something in him deeply trusted that part was taken care of. The frame that he was most alive to was that of being a collaborator in a shared process. I wanted a way of reflecting that back to him. So I tried to create a high-level, simple, pictorial summary of his/our journey that he could resonate with and build off of. I’m not an artist, but I figured he’d give me points for effort 🙂 When I showed him the diagram, I narrated the flow of it for him in words:

“In May of 2024 you were admitted to Stanford hospital, a few days later we were thrilled to have you go through a bone marrow transplant. Every BMT comes with unexpected twists and turns. In your case you came down with intense fevers and a few infections. The medical team here was able to diagnose and start you on the right treatment. You’re responding to it beautifully, and the infections are getting better. Now we’re in June, and you’re in the “Building strength” phase. You’re getting stronger every day, step by step, and we’re all healing together. The heart in that circle, with you, Nipun, Guri and me, represents everyone whom we are connected to both in visible and invisible ways. There’s a multidirectional dance of offering and receiving and healing that’s happening. And through it we flow to the edge of discovery together. We each have our own mountain to climb, and we do it each in our own ways, but we are all connected at the base. And we flow into the wider world with our learnings, our light and love. And the cycle continues as we continue to build strength, step by step, and dance and flow and lean into the edge of discovery again and again. Because of the intensity of the infections and the inflammation that happened in the brain, some of your memory is temporarily offline and you don’t always remember being admitted here, or that you had the transplant. But those details aren’t deeply important at this time, they’ll get clearer eventually. We’re in this new phase now and we need you do to exactly what you’re doing– you’re building strength and being a core part of this deep, collective process we’re in.”

“I love it,” Viral said, “This is amazing.” He says that every time he sees the drawing. And I bring it out multiple times a day. Some of the doctors and nurses have been subjected to it too 🙂 As rudimentary and unrefined as it is, it approximates some of what really matters to Viral, and where he innately sees value. As we wait for his short-term memory to re-emerge as the doctors have assured us it will, this little scribble allows us to ignore the threads that tie us in knots, and instead pick up the ones that he/we are drawn to explore in this uniquely potent time.

***

There is something beguiling and out of the ordinary, about our current conversations with Viral. It feels at times as if he has arrived back in our midst from somewhere at once faraway and unutterably near. A place that cannot be named or visited like a country. A place that cannot be described except in koans and codes. Below are nuggets from sundry conversations Guri, I and other dear ones have had with him over these past few days. Like all excerpts, they are by definition incomplete, and missing the contextualizing frame of the surrounding dialog. And while I try to transcribe as faithfully as possible, these efforts aren’t perfect. My apologies in advance to you dear reader, for any ways in which this muddles or distorts Viral’s meaning. [I know in advance that he himself, gracious as he is, will forgive this without a second thought.]

How are you feeling right now? There’s a freshness in terms of aliveness. You’re not fully arrived and you’re not fully departed. And then there’s the practical aspects– it’s been unclear what is coming up next in terms of different injuries that have happened… And on the flip side there’s all the glory of livingness, that’s alive and possible and experiential. And then there’s the collective living of that, whatever the collective in that moment means. That has been beautiful as well. So it’s like okay– you want to live your life with authenticity, joy, and a sense of aliveness, and if you do that then everything else is details in terms of how it shows up.

What is the value of being in the present moment? I think fundamentally for me it’s ultimately about where your attention is genuinely called, and what does it mean for it to be called. If you really are alive to that, then there isn’t —any, “I should be attentive to this,” or “I should be doing this” Those things can be great creative constraints. Like, “My values and aspirations tell me I’d like to be doing such and such, but when I don’t go in that direction there’s something deeply valuable to learn from that.” Because in general, we tend to learn from where the attention moves, and what that reveals. [attention always moves in the present moment.]

Have you felt alone or connected or both during this period? Both alone and connected in some fundamental ways. Everything feels connected and interrelated for the most part. and I think there’s also definitely an element of fundamentally different or unique, specific channels that you are walking through or experiencing that others won’t automatically see. 

Are you comfortable with that kind of aloneness? I think it’s the nature of the universe. I don’t know that I find much reason to argue with or resist that. 

What is this period evoking in you? A kind of gentleness and fruition. A unique, gentle and kind energy. 

How do you experience your self in this time? The thing that keeps coming up is, there is this core attention–or consciousness, or however we want to name it–  from which we act and think and talk and “consciate,” and all of the other things. Generally it feels very solid– but it’s actually not. And in these types of moments you really see that.  I know for instance, that I will only catch pieces of what someone is talking about, but I will need to make my own story out of that– including with my own story.

That’s true – we always only hear a part of the story, even our own, and we construct from there. Yes and what I mean is something even more fundamental than that. We use up a certain kind of fundamental energy in just being the way we are.

The mind typically imposes continuity on experience, but in your case at this time that’s not happening in quite the same way. What does that feel like? You get to examine the actual experience when you don’t have the experience of that other type of continuity — and that can be both exhilarating and completely overwhelming, and depending on where you are on the spectrum you will try to adapt accordingly.

What does adapting to not having the solidity of continuity look like? The crux of it is developing some amount of — a set of qualities — including some amount of curiosity, some amount of fearlessness, some amount of assuming goodness and benign-ness. At the same time protecting yourself from where those conditions may not be met. 

What is it that needs protection?Maybe somewhat ultimately, but maybe somewhat confusingly — that need for protection is what needs protection. If we buy into a certain amount of. “I need protection for this,”– then that becomes a bit of a self-fulfilling prophecy. 

***

For the last few days I have been giving Viral a black pen and a blank sheet of paper in the morning. I ask him to let the pen move in whatever way feels most natural in the moment. Then I give him some brushes, an open paintbox and ask him to add color in whatever ways feel in flow. He tries, unsuccessfully each time, to get me to paint on his behalf. He does not think of himself as any kind of artist. But I’ve always been struck, even in his casual doodles, by the unselfconscious freedom and potency in his lines. And now in this twilight zone we find ourselves in, I’m interested in what might emerge through him in the wordless medium of form and color. And what words he might find afterwards to describe the emergence.

 Title: The World of Possibility, June 24th, 2024

What does this painting evoke for you Viral?

Logical creative possibilities that are seeded from a place of structure and generative force. And then the way it propagates…there  are things that support the propagation at both upper and lower ends. They make the expression an expression of possibility. And then there’s this watchmanship that’s underneath it all. Watchmanship is not the right word– it’s guardianship. The green one, and the brown one too, they are noble platforms. And these are eggs (streaming out) into the world of possibility. Then there’s the sky, ever potent, ever present, ever watching… 

“It is strange to be here,” wrote John O’ Donohue, in the opening lines of his touchstone book, Anam Cara. “The mystery never leaves you alone.” It IS so strange to be here. And as for the mystery, it has us by the scruff of the neck. Are we carried between its jaws like prey by jungle cat, or like kittens by their mother? On some days its hard to tell the difference. But being here with Viral makes me curious about it either way.

One afternoon, last week, with the clarity that sometimes flashes forth even in the midst of his fever-dazes, he says to me, “You have limited places where you can take wild swings. But you have to take those swings while you can. You have to show up on the playing field.”

Wild swings. Is this whole period a series of them? Is that how he sees this stretch of the road? Talking to Viral in these past weeks has often had a certain dream-like quality to it. This is heightened by the fact that hospitals are not tethered to the earthly rhythms of night and day, and also by the fact that right now, Viral is not moored to time or place in the ordinary way. At times, when he speaks, it feels like his words comes to us from between two worlds. He has always had a unique form of eloquence. That eloquence now, is the same but also different. There is a fluency, originality and poetry to it– these things were there before, only now they seem much less mediated by the mind. He speaks with heightened thoughtfulness, and yet there’s far less thinking behind the words. He is using the rhythms of speech– but it often feels to me, like a form of singing.

When I am not caught up in the many demands of this period, when I’m not devoured by its unknowns, and my own heartache, I discover that there is a quiet voice whispering to me below the surface. And I know beyond my earthly knowings that all is well and all manner of things shall be well. And I find that I am deeply grateful for, and delighted even, by the dimensions that are blooming in this crevice of timeless time that we have fallen into. This beautiful being whom I’ve been married to for almost nineteen years has never been so simultaneously familiar and utterly mysterious to me.

Sometimes familiarity and mystery, play against each other like the facets of a diamond. Each catching the light and reflecting it in dazzling ways. Viral’s body language is intimate to my heart. The way he tucks his chin in and cocks one eyebrow quizzically when he has his reservations about something, the way he wrinkles his nose and smiles with his eyes in response to humor, the precise way he clears his throat before speaking, the meticulous way he cleans the lenses of his glasses, the prayerful way he folds his palms over his chest when sleeping on his back, the manner in which his gaze softens and shines when it catches mine, the way he— I could go on and on. I know by heart the way he does a thousand times a thousand times a thousand different things. But now, in this altered reality, these intimately familiar gestures, shades and nuances of being flash forth, poignantly alternating and sometimes merging with, intimations of something more enigmatic, nebulous and inscrutable.

He is at once both utterly the same, and incredibly new. In this time he has been at once both deeply tapped out — and profoundly tapped in.

***

During the most difficult stretch of my chemo (which even at its most challenging was exponentially easier than the road Viral has traveled,) I wanted nothing more than to just be within the experience as simply as a stick on the ground, or a stone at the bottom of a river bed. Empty of opinions about the present, or ideas about the future. Carrying only the honest weight of my being, and the weightlessness of a transparent mind. Nothing more and nothing less. Watching Viral live through the intensity of the past weeks it felt like I was watching him enter that space of a paradoxically alive inertness.

“Where do you disappear to in those intense times?” I ask him one day.

“I don’t go anywhere, ” he says quietly, ” I am right here.

“Does your mind go to the pain and discomfort?” Guri asks.

“It’s not quite like that,” he says, “It’s just — moment to moment.”

***

It amazes me. The cogency, clarity and insight that has surfaced throughout this time, despite the formidable degree debilitation. At the mundane level there are blank spaces in his mind, that will need to be filled back in, but there are also dazzling connections being made, even in the midst of the storm. Even his doctors are starting to see it. “What I’ve seen in you over these past weeks,” says one of them, “Is equanimity. I don’t come across that in people in your circumstances. And yesterday you said something that really stayed with me. You said you are ‘trying to attune to whatever is arising.’ I don’t have many patients who think like that.”

That kind of attunement, in the crucible of this time brings with it the flame of quiet revelations.

***

“You have certain choices. Is this a period of determination versus I’m just here for what’s going to happen? First and foremost it’s a practice of just being true to your journey. What is it that we are empowered by? What is it that we are empowered by, even when we are being challenged by something, or being driven to do something different than what we wished to do in the moment before? That’s kind of what I get interested in– like, what is the true exploration?“

 Do you trust life? I think you generally have to- but you also have to have a healthy ability to go either direction.My natural orientation is towards the unknown. What does it mean to be at the edge of discovery, the edge of aloneness? Things are always knowable to the next level of your understanding, and that edge is not something to shy away from. It’s something to attune to. That attunement is the basis for the confidence to go forward. How do you have your own experiments and learnings that you adopt as time goes on? And how do you make it so dynamic that it’s not about what you think it should be? It’s about what is moving your heart. You value the depth of the discoveries you’ve made up to now. Then those things start to be combined. New combinations and permutations happen, and at some point something new emerges. In this process we keep coming back to some form of experience. Maybe it’s something you need to iterate on for a while. Maybe there’s some evolutionary honing that’s happening in the moment. The process is dynamic and courageous…

Ultimately what I want is to be more of an expression of what is goodness.

***

From a conversation yesterday morning…

What is your spirit doing in this time? Attuning to the emerging nature of things. More specifically, [inquiring into] what is healing? What is the role of the individual, and the role of the collective? And what is the intersection between the two?There is something about living into that, as unknown as it might be. There is something to a playful dedication to this collective set of principles. It feels so satisfying when creativity is there, playfulness is there, and the emergent and collective nature is there. Then we start tapping into the source of things. I’ve also been playing with certain inquiries. How do you receive? How do you offer? How do you experiment and synergise intentionally?

Is opening yourself to receiving the same as opening to learning? Nice nuance there. I think receiving is a precursor to learning. If you’re opened yourself to receiving, you’ve opened yourself to learning and to acting. Your being is available to integrate yourself into whatever you’re inspired to do. 

How do you open to receiving? I think you actually have to gauge what your authentic relationship is with that which you are trying to open to. What is it that you are connecting to, and how resonant is it to open yourself up to that.You want to open yourself in a healthy way — not overly opening yourself up in an untimely or unskillful or unwise way. 

How can you tell whether it’s skillful or not? Ultimately I guess from your own experience but until then I think from your intuition. Asking 1. Is this worth learning from? 2. If yes, how so, why so, where so?

***

Watching him over these past weeks that were filled with such physical pain, at times Viral has seemed to have the face of a child. His eyes gazing at the world around him, with such heartbreaking innocence, trust and vulnerability. At other times he seemed positively ancient. His face in those moments, the face of a very old man– hollow cheeks, sunken eyes, shriveled mouth. How strange it felt to see past, present and future in a single beloved countenance. A reminder of how we carry it all within ourselves.

***

He is doing better now. What a blessing to be able to say that! There is still a ways to go, but the signs of improvement are many and meaningful. The last three days have been a turning point. He is regaining mobility, clarity and capacity more quickly than anticipated. Today he sat up, he walked, he ventured outside of his hospital room, he wore his regular clothes instead a hospital gown. He was able to remember the names of his nurses. He was able to interact with multiple groups of people, and able to enjoy a small celebratory dinner with Nipun, Guri and I. These are small things at one level, but right now they count as enormous.

“What feeling-state do you find yourself in right now?” I ask him this evening. “I feel deep relaxation,” he says, “and tenderness and the sense of a very clear emergence, and an emerging stability. In an odd kind of way, this time has also been very humbling. Not conceptually but in a more lived way. Along with this there is a strong component of letting go, letting grow, letting flow. There isn’t a defeated sense of, “Oh no, I can’t do this!” Instead there’s an attuned clarity, joy, purpose, interest and heart movement. These things seem ultra important. Not just at the individual level but also the collective one. Why are we attuning together, and for how long? Maybe it’s for five minutes. And maybe it’s for 500 years.“

With a bone marrow transplant so much can happen in that treacherous window between the annihilation of the old immune system, and the phoenix-like rise of the new one.

And so much did.

***

The drugs make his limbs tremble. His fingers, darkened from chemo, shake violently as he attempts to bring a cup of water to his lips. He can no longer stand or walk on his own, and requires assistance for all the basic activities of life. For well over a week his body is wracked by relentless fevers that often raged above 104.The fevers clasp him tight, loosening their hold only very briefly, before laying claim to him again . His whole body is shivering, and we are told not to pile on blankets, but to place ice packs on him instead. We hate doing this, but there are no better options. He does not complain. Ever. His face takes on a quality of absorption, and it’s as if all his energies are settled within. His body is going through what it is going through. He is not pushing the experience away, he is not desperately seeking relief, he is not asking those around him for anything. There is a nobility to his silent endurance. It tears at my heart. When he sinks into the fiery ocean of a fitful sleep I wish I could reach him under the waves of pain, but that place is un-enterable. I hold his hand, stroke his forehead, listen to his breathing, to his quiet, occasional moans. I see the long and lovely length of him in his hospital bed. So much has been taken from him seemingly overnight at this stage of the journey. And yet his spirit is intact.

It has never been more luminous.

***

He has so little strength, such short periods of lucid wakefulness, and in those windows of time I see him directing what little energy he has, towards truly seeing people, and letting them know what he sees. “Thank you,” he says to C, who has stopped by to empty our trash bins, “Thank you for keeping us safe through the work that you do.” “You are both confident and gentle, he tells K, “That’s a rare combination.” To J, he says, “It seems like you’ve always followed your growth journey wherever it’s taken you. It takes courage to do that.”

Even now he tries in so many little ways to take care of me. It is second nature to him. Even when he is hands down, the one most in need of care.

***

Over these past couple of weeks Viral has endured acute physical pain, near-constant exhaustion, deeply debilitating bodily weakness, delirium, and the erosion of many of the landmarks that a working memory provides. Here in his hospital room, nights and days blur into one another, a stream of injections, pills, IV medications, vital sign readings, blood sugar tests, and more. He’s had two MRIs, two lumbar punctures, several CT scans, multiple x-rays, EKGs, EEGs, countless blood tests, and cyclonic visits from teams of experts from multiple specialties, who blow into the room with their considerable expertise, their repetitive inquiries, their varying degrees of sensitivity.

“What is your name?” Viral Mehta. “When is your birthday?” January 9th, 1979. “Where are you?” Stanford hospital. “Why are you here?” I had a bone marrow transplant.

Over and over again, day after day, the same questions, the same answers. Until one morning something changes. “What is your name?” Viral Mehta. “When is your birthday?” January 9th, 1979. “Where are you?” A nice room. “Why are you here?” To connect with good people.

“You are in the hospital because you are sick,” says one of the doctors (not one of my favorites). Viral responds in a perfectly polite and utterly unfazed voice, “We’ll see.”

On this journey that is now going on nine years, Viral has never deeply thought of himself as ill. “You’re healthy, and you just want to get healthier.” A gifted naturopath had said this to him years ago. It resonated with Viral’s own felt sense of his condition. It still does. Meanwhile, the ground has shifted under the rest of us as we consider the implications of a mind that no longer knows exactly where the body is.

But where is the mind? What is the body? And does anyone really know?

***

The signs have been there for awhile, but were confused with drug-fevers, and hospital-induced delirium. After flying in the dark for days, we learn in stages, that Viral is navigating two separate brain infections. One caused by a bacteria, and the other by a virus. This in addition to the fungal and bacterial infections already identified, and being treated, in his lungs and his blood. Meningitis. Encephalitis. Inflammation in the temporal lobes, impacting his memory. Words we’d never anticipated hearing on this journey. The doctors say he has an unusual combination of infections. We are in uncharted territory. They put him on an even more aggressive and complex regimen. There have always been all kinds of x factors on this path. Now there are exponentially more. But with time and with the right treatments they see a way forward to full recovery on all fronts. His fevers are dissipating, and as the inflammation slowly reduces he will get better, his memory will come back. With physical therapy his strength will return. He has multiple experts discussing all angles of his treatment, and we are seeing early signs of improvement. “We are cautiously optimistic,” says one of his doctors.

“He is a warrior,” says his nutritionist.” “I feel like when people go through something like what he’s going through, you get to see who they really are at their core, ” says the nursing assistants helping us today, “Whatever core qualities they have get amplified. And he is just so kind- even through all of this.” She turns to Viral, “All of us love getting to help take care of you because of who you are.”

***

Who are we without the reliability of our everyday memory? Shorn of it, we are stripped down to something more essential than the mask of personality. To come undone in this way would be disastrous for many of us, myself included. When there is nowhere left to hide, will the self open like a closet to reveal skeletons? Or like a shell, disclosing its pearl?

***

Viral’s short-term memory and some of his long term-memory have temporarily gone offline. He does not fully remember being admitted to Stanford, or having a bone marrow transplant. He does not remember the acuteness of his fevers or the tumult of all the tests he has been put through. He does not remember that I am being treated for cancer, and that he was a pivotal part of helping us plan for Nipun, Guri and I to be together during this period of our dual health journeys. Initially we tried to fill the gaps in his memory by telling him these things, over and over again. Eventually realizing that for the time being these details are not going to stick. His uniquely sharp and gifted mind cannot track and respond to things the way it has been accustomed to.

Yet in some fundamental ways he has never been more himself.

Unfailingly Kind. Appreciative. Selfless. Fearless and Tender.

I have never loved him more.

***
For a while, every time he was told he’d had a bone marrow transplant Viral’s first response was, “Whhatt?!” [in an endearingly familiar tone, not of dismay or horror, but of astonishment]. Second response, on learning more about all the different kinds of treatments and care he is receiving, “This is amazing!” And third response, “I’m so lucky.”

Amazement and luck are not the words that immediately come to mind when I consider our situation. I love that they are his.

It reminds me how amazing he is.

And how lucky I am.

***

“Crack open my shell. Steal the pearl.

I’ll still be laughing.

It’s the rookies who laugh only when they win.“

–Rumi translation, by Haleh Gafori

Even through this time, his sense of humor is deadpan and delightful. It catches us unaware in many moments.

When his well-built physical therapist walks in, the tele-monitor starts beeping. “It knows the muscle quotient in this room just went up by a lot,” says Viral. “Who am I?” Nipun asks him during one of his night time vigils. “DJ Dave,” says Viral. “No, that’s not it.” “Javier.” “No. I’m your brother!” Viral laughs, “I know that Nipun. I was just joking.” 🙂

In the middle of severe debilitation he asks for his hand sanitizer. “You are the king of hygiene!” I tell him. “The king of hygiene and high jinks,” he says with a twinkle.

***

He has gotten very weak. Even rolling on his side requires help. Standing up yesterday, even with the assistance of two people, taxed him to the point where they suspected a possible seizure (which later thankfully turned out not to be the case.) The heavy drugs are helping with the infections but the process is slow, and everything costs the body. It takes a certain kind of strength to be as vulnerable as he is in this time, and not crumble. To be able to accept so many dimensions of support, and the change in his capacities, without consternation, frustration, bitterness or shame. His acceptance imbues a kind of dignity to the whole process. I am in awe of his ability to adjust so quickly and gracefully to these new circumstances — our new circumstances.

“You have an extraordinary degree of humility,” I tell him. “I’m not sure about that,” he says, “maybe I’m just very open to the fact that I have limited answers.” That just may be one of the best definitions of humility I’ve ever heard.

“This whole time you’ve never complained about anything- not even when you are in the most intense pain.”

“Everybody has got their pros and cons,” he says.

***

“We don’t rise to the level of our expectations. We fall to the level of our training.”

Viral often quoted these words by the ancient Greek poet, Archilochus. Now he is living them.

How to communicate to you his quiet steeliness, his utter sweetness, his selfless instinct to serve others even when he is not quite sure where he is or what is happening? I have lost count of the times he has asked me to follow a nurse or nursing assistant out of the room to see if she or he needs anything. I’ve lost track of how many times he has asked the person who is helping him, “What can I do to make things easier and more seamless for you?” When I am giving him food he wants to make sure everyone else has eaten. When one of the many machines in our room started beeping he said, “Pavi– can you check on that? I think someone is suffering.” When he is asked how he himself is doing, more often than not his answer is, “Fantastic.”

How to convey the brutal beauty that sears my heart every day and every night as I watch him navigate the unimaginable. He has no idea how spectacular he is. Every time I or anyone else tries to tell him, he turns the compliment right back our way.

A few days ago, in the midst of a moment where he was experiencing some confusion I asked him quietly– “What do you really want the focus of your life to be?” Without missing a beat, the love of my lifetimes responded:

“To be in the flow of my deepest evolutionary process.”

***

Guri and Nipun are special partners on this unscripted journey with all its twists and turns. They have put so much on pause for months on end to support us through this, whatever this is with such generosity and care. Viral registers their presence in his own way. “Remember the story of how Nipun used to watch over you with eagle-eyes when you were a baby?” I ask him, “He’s doing the same thing for you now.” “I know,” says Viral, “I mean I don’t really ‘know,’ but I have a kind of sixth sense about it.” A few days ago Guri asks how he is feeling, “Obviously I feel very grateful for each of you, and for having the support to continue little by little. You recognize how it’s all so tenuous, that you can be like, “Yeah I feel strong and I can do this or that,” but really it’s all very tenuous. If I didn’t have the support I wouldn’t be able to do it.” How is your body feeling?” She asks, “It doesn’t feel great. But it feels supported. And I think that goes a long way.” Guri’s quiet, steadfast, multi-dimensional support goes a very long way.

Our parents, siblings, extended families and community of friends near and far are potent contributors too. We are sustained by so much more than what we can see. The blessings, the prayers, the goodwill, generosity, and thoughtfulness that surrounds us is legion. Viral alludes often to all the offerings we are receiving in this time. “This whole thing brings so much togetherness,” he says, “It’s a good life.”

It is special to see how deeply he feels the togetherness of it all. I feel it too, and bow to it. Without it I don’t think I would be able to breathe through this time. I would have been crushed a long time ago.

But I would be lying if I said I don’t also feel the separation.

***

Nipun, Guri and I are staying for the next few months, in a beautiful home that we were lucky to find, just fifteen minutes away from Stanford Hospital. We had assumed when we arranged for it, that it would be the four of us living there. So far I’ve only been at the house on alternate nights. The rest of my time is at the hospital with Viral. It is hard to tear myself away from his side. The garden at this home is rather magical — but I feel oddly immune to its charms, and unexcited about entering it. I think of this Rumi translation by Coleman Barks…

Come to the orchard in spring.
There is light and wine and sweethearts
in the pomegranate flowers.
If you do not come, these do not matter.
If you do come, these do not matter.

***

Pavi: You know how in Sufi poetry the Beloved and the Divine are addressed as one? I feel like I can somewhat understand what that means because to me, you are the beloved and you are my experience of the divine.  Do you know what I mean?

Viral: I don’t know that I know exactly, but  if I sense into it, there is something you feel in yourself and there is something that you feel in me. Taken to its ideal level, what you feel is infinite love.

I place my head on his shoulder and his arms immediately cradle me as they so often have. I sink into the depths of this wordless, formless, endless love, that is my home. For those moments time disappears. Everything feels complete.

Everything is complete.

***

I’ve always loved Viral’s voice. Its warm timbre, its articulate confidence, clarity and depth. That voice is muffled now, soft, halting and slurred. The muscles in his face and jaw are tremulous. Speaking takes significant effort. Some words come slowly, others never arrive. And yet there is an otherworldly eloquence too.

“The fire of goodness is the same in everyone,” he said a few days ago, “We’re all just doing the best we can.” And this afternoon he looked over at me and said, “It’s all a remarkable adventure.”

“Ultimately life is emerging in its own way. One never really knows what that means. Why do things emerge the way they do? How? When? And through whom? Through what partnerships and challenges? Ultimately it’s more and more mystery…But at another level one has to deal with a lot of the unknowns, and those can be painful and difficult things possibly. [How does one deal with that?] Through true conductivity and connectivity,” says Viral, “Everything else is a mystery.”

The past few days since the last post have largely passed for Viral in a fever-state. For the first couple of days his temperature hovered around 104. Today it’s been close to 103 for much of the day. He has had to recede into some place deep inside. There has hardly been any energy for eating, speaking, or opening his eyes, let alone sitting up or walking. The fevers exacerbate the tremors, headaches and the bouts of confusion caused by some of his medicines. What I imagine would be utterly frightening or disorienting for many, myself included, does not shake him internally. Not even when he is literally shaking head to foot.

There is so much happening inside his body.

There is so much happening in his body — including the fact that from that 0.1 glimmer/glint/flicker-on-the-horizon, his barely-there WBC count jumped the next day to a decisive 0.8, nearly tripled the following day to 2.3– and today rocketed to a gobsmacking 8.7(!) For the first time in close on 9 years his WBC count and Absolute Neutrophil Count (the part of the WBCs that fight bacterial and fungal infections) are in the normal range. Did I bury the lead there? Forgive me. It IS a truly remarkable milestone– just one that we haven’t quite had the chance to fully celebrate yet given all the complexities riddling the process.

***

Two days ago the infectious disease specialists consulting on his case say all the tests done so far for fungal infections have come back negative. But because of the continued fevers and the lesion in the lung, they have to keep looking. The next thing to cross off their lists– even though they think the probabilities of Viral having it are very low– is tuberculosis. Testing for this entails temporarily moving out of the BMT unit to a negative pressure room on the oncology floor. We don’t really want to leave, and the team really doesn’t want us to either. But we all know it has to be done.

We make the move to the new unit and its cozy (some might call it cramped,) negative pressure room well past midnight. The next afternoon, in the midst of continued fevers, Viral has another episode where his heart rate jumps close to 200 and bounces around at that elevated level for awhile. The Rapid Response Team is summoned again and again they rush into the room, hook him up for an EKG, do a series of blood tests, administer electrolytes, magnesium, and a double dose of a fast-acting heart-regulating medication. They are surprised to see Viral smiling, surprised by how unflustered he is even with his heart doing these acrobatics. I want to tell them so many things about this rare being they are treating. I want to tell them for instance, that his heart is one of the finest they will ever come across. But instead, before they leave, I hold up a small wooden bowl filled with little cloth heart pins, made by women at the Gandhi Ashram in India. Viral has been gifting these hearts to the dozens of different people who’ve taken care of him over these past weeks. He tells them a little bit of the story behind the hearts, then asks them to choose their favorite one, and thanks them for their heartful work. It’s a small gesture that has touched so many of them in special ways. He is too exhausted to extend it now. So I do the honors. “Thank you for taking care of his heart,” I say (it is the heart of my heart.)

The doctors think this event was triggered by the fevers, and exacerbated by all the other things challenging his body at this stage. They are confident that the rising WBC is a sign of engraftment, and that as his new immune system revs up he will start to get better on multiple fronts. In the meantime they give him a dose of steroids to try and bring the fever down. It breaks late at night, but returns with a vengeance the next day.

***

Like those in the BMT unit, the staff here on this new floor are thrilled by our small attempts to bring a little greenery, beauty, sacredness and delight into the room. And I am surprised all over again by how so little can go such a long way. “I’ve never seen a room like this anywhere in the hospital,” says the young doctor from yesterday, “It feels good just to be in here.” “I wonder what your home looks like– it must be so nice! Are those real flowers?” asks the nurse.

The physician’s assistant who originally informed us we would have to move to this unit had said to us, “We really tried to find a way to have you stay here in the BMT unit. You’ve made the room so beautiful – we hated the thought of needing to undo it all!” “I’ll come check on you,” says H. one of our favorite charge nurses, “We’ll float some of our BMT people each day to your unit and have them assigned to you.” (She’s been true to her word.) “We’ll get you right back here when those TB tests come back negative.”

When we moved, along with more functional items, the mandalas, the cloth vines, and flowers, the fairy lights, the gratitude board, prayer flags, and other special items adorning the walls and various nooks of the room, were all gathered up. The only thing we left behind are decals high on one wall. Decals of flowering vines, studded with bright-winged little birds. They are reputed to be removable, but I’m not entirely sure they live up to that part of their reputation. They are really lovely though. I put them up with the intention to “forget” them whenever we were discharged. An anonymous way to bring a little cheer to the series of patients who would inhabit the room after us. Because birds and flowers make most things better.

***

It is easy to be here with Viral. There are so many little things to do, so much to attune to, observe and respond to, so many ways to attempt to make things smoother, safer, and less painful for him on different levels, especially in these times when the fever-state is strong, and he can’t be present in the same ways that he’s used to being present for himself. And when there is nothing immediate to do, it is easy to sit quietly with him in the room. To simply breathe together. It is easy to be here with him, even when it is hard. In these past days, it’s only when I leave the hospital late at night, that I sometimes am slammed by– sadness isn’t the right word, and neither is grief–maybe it’s a kind of grateful, awestruck, sorrow? Such long-drawn out pain. Such steely strength beneath the bodily fragility. Such a time we have shared and are sharing together. I register his grace and mortality. I register the tenuousness, the blessing, the fierce medicine, the fiery, unrelenting mystery of it all.

None of these words are sufficient. No words are.

***

It is almost four in the morning and his fever which broke for a few hours, is now back. I call for the nurse to administer the IV Tylenol. Right as they arrive, so does a phlebotomist, here to do another blood draw for tests. He is not able to speak much, and he doesn’t take off his eye mask, but he holds out his arm for her tourniquet. She has a gentle almost grandmotherly way about her. When she slides the needle in, he says, “So seamless.” He says this almost every time. Sometimes I’m taken aback by it – the priority he gives, even in this fever-wracked state, to sweetly acknowledging people.

In a few more hours Nipun will swap in for me. He is always ready and up for whatever is needed. “You’ve got this,” he will say to Viral as he enters, “We’ve got this.” Then, with Guri, who has been such a steadfast companion on this road, I will head to my weekly chemo session –the tenth round of twelve. I realized recently, that somewhere along the way I’ve stopped thinking of myself as a patient. Any side effects I have felt in these past weeks are pale and inconsequential alongside what is happening in Viral’s body.

Faced with these persistent fevers, his racing heart, labored breathing and the continued fluid retention that has swollen his lower body– it’s easy to lose sight of the fact that overall things are moving in a good direction– and that engraftment (the vital key to everything else) is happening. His rebooted immune system is kicking into gear in its own right. Yes, it is a rough and risky road, and yes, there’s much to still be worked through, but he is in good hands. We are in good hands. With Guri and Nipun by our side, and our families and extended community on hand for anything needed, we want for nothing.

I think back to a moment earlier today. Viral, in a brief stretch of wakefulness asked me a question, and I paused because I didn’t have an answer. “It’s okay,” he said, “One thing at a time.”

One thing at a time.

***

When H. visits us, as she promised she would, she tells Viral how amazingly well he is doing for this stage in the process. “You’re doing everything right,” she tells him, “It’s going to get better. Just hang in there.” Then she tells us something that makes my day, “You know those birds you left in your room?” she says, “The patient who moved in, couldn’t stop talking about them. He thought they were the most amazing thing.”

One of the quotes we put up on the whiteboard of Viral’s hospital room

This is not a journey for the faint of heart. A CT scan a few days ago reveals a lesion in Viral’s right lung, indicative of a fungal infection. This, in addition to the bacterial infection already in his system. In order to get a clearer picture of what is going on, a series of blood cultures, chest x-rays, CT scans, an ultrasound, and echocardiogram are ordered. Infectious disease specialists are brought in to determine the best course of action. In an attempt to provide broader, stronger coverage, a new set of powerful antibiotics and anti-fungal medications are added to his regimen. Extra fluids are pumped into his body to protect his kidneys from side effects of the new drugs. This, at a time when he is still struggling with fluid retention, and still on a daily dose of diuretics. Additional complications from GI tract issues and related pain play havoc with his system. His temperature rises, his oxygen levels fall and his pulse rate soars. Two nights ago, as all of these various forces converge, his heart, his strong, steady heart, is thrown dizzyingly out of rhythm. The nurses leap into action. Within minutes they have him on an EKG, and a doctor is in the room, reading the charts and figuring out the best course of action. In this case a low dose beta blocker by IV to bring his heart rate down and resettle his system.

In the early hours of the morning his heart rate escalates wildly again. Even slight exertion now triggers acute dysregulation. Simultaneously and related to all of this, fluid is continuing to build up internally with no way of releasing on its own. A rapid response team rushes in. Medication is swiftly administered and a special catheter inserted to allow his system to discharge fluids more easily. Adjustments and further adjustments are made to his pain medications. A decision is made to pull out his central line — a possible source or repository for infection. A double dose of platelets are transfused in advance, and IV lines inserted peripherally in his veins so that he can continue receiving the multiple streams of medications needed in this time. “We’ve got you,” the nurses, the phenomenal nurses say this to us, over and over again. Sometimes there are more than half a dozen of them in the room with us, covering for all possibilities, meeting the exigencies of the moment with confident competence, and such compassion.

***

To successfully subdue the presence and growing threat of infections it is vital for Viral’s immune system to come online. Neutrophils– a particular kind of white blood cell– are the most powerful anti-bacterial and anti-fungal agents we have. But at this juncture engraftment has yet to take place. It is +18 days since transplant. The old immune system has been effectively shut down and the new one has not yet set up shop. For weeks now his WBC count has been less than 0.1 In this vacuum his susceptibility to further infections is high. The toll on his body is intensified. Sitting with him, not long after we had learned of the presence of a bacterial infection in his blood, I ask Viral a few questions…

How are you holding this new piece of information?

One– you gotta roll with whatever is happening. And two– we’re still not even close to pushing what the edges of the medical system can and has handled. Sure the risks go up with each of these things but there are still a lot of tools at their disposal. [Too much realism and you’re in danger of being a cynic, too much trust and you’re in danger of being naive. How I love him. This being whose way lies in the sweet spot between the two. It’s what enables him to engage head on with reality without ever losing the spirit of possibility.]

Can you describe some of what you’re experiencing at a physical level?

Obviously different kinds of discomforts. A lot of it is focused around the hemorrhoid pain. There is something about the constancy of the discomfort that becomes its own challenge — different from the acute episodic aspect that is also present. So I am navigating both of those things. And then there’s the extreme bodily weakness and fatigue, the fevers, the drowsiness, the brain fog, canker sores, the challenges with retaining fluids, the erratic heart rate, low oxygenation and all the rest of it. Somehow the main asset in all of this has been kind of really remaining present to the present experience. It’s not even a conscious attempt at doing this, it just happens.

There are so many harsh changes taking place in the body as a result of all these side effects — the dark patches on the skin, itchy palms and feet, dry mouth and chapped lips, the considerable swelling of feet and legs, the tremors, the inability to lie flat without coughing, the blood in your phlegm. The difficulty in doing things that used to be simple — standing up, walking, eating, using the restroom. How do you experience all of this change without being dampened by it?

We know that biologically, with all the medications and chemo, and now these infections, I’m in sort of really slowed down microbiome state, and that has all these implications on the neurotransmitters [that give us a sense of well-being, motivation and general positivity]. So there’s the layer at which all those things are sense-able, in that I can sense that suppression. But it doesn’t generate strong identification. In a way it can just be revealing. It’s not like pain has no effect on me or anything like that. It’s clearly unpleasant. But it’s not creating these energetic flows of harping on the unpleasantness, it doesn’t spin off into projecting this pain into the future. It’s like, “Yes the unpleasantness is here, now.” And the story kind of ends there. [To witness him interfacing in such a quiet, understated and humble way with the many bodily hardships, the chaotic episodes and dramatic alterations of this time, breaks my heart and simultaneously swells it with love and amazement. I am awed all over again by the gift of this being, and the gift of being by his side.]

There is a change in your expression and body language when you have been navigating pain over a long period. Your usual sunniness and availability is dampened, and from the outside it could seem like you are really down. But knowing you, I know it’s not quite that. How would you describe it?

There is a transparency to all this. There is definitely something happening, and that shows up in my expression and posture. In those moments I think what my body is reflecting is an engagement with the unpleasantness. But my experience of that engagement is not a feeling of down-ness. Right now there is just not the same kind of residue that I myself have experienced in the past with pain. Maybe there’s just not as much resistance. Shinzen Young has a neat equation for this: Suffering = Pain x Resistance.  So yes there’s pain that I am feeling, but there’s not a lot of suffering because there’s not a lot of resistance.

***

I am so grateful to be able to spend almost all of each day, and every other night, here with him at the hospital. Nipun alternates nights with me, and Guri is here for a good part of each day as well, while also constantly planning for and making meals to nourish our journeys. Both of them are unconditionally making so much possible for both of us. (And many others are holding all of us through this time in visible and invisible ways.) Between us we are able to ensure that one or more of us is with Viral at all times. In the wee hours of last night, as he drifts in and out of sleep with so many different wires and tubes tethering his tired body, I lean over and placed my palm in one of his. His fingers curl over mine. I feel the warm clasp of his hand, as familiar to me as my own. A small squeeze, a caress from his thumb. Even half asleep and wracked by many ills, he is sending some of his strength and love, my way. May I receive both as deeply as I can.

***

It is the evening of Day 19. He is more stable now on certain fronts, but has been more fatigued than usual today, and he is starting a fever (again). His head hurts and he has not had the energy to speak much, but he makes an effort to ask the night nurse about his labs. She writes them on the whiteboard on the wall across from his bed. Platelets 65k (thanks to a transfusion this morning of two units). Hemoglobin 7.2 (holding steady from yesterday, so no RBC transfusion tonight, but likely one tomorrow). And WBC 0.1.

0.1. It takes a moment to register this information. A number so small it seems negligible. But it’s not. It’s a detectable amount. It’s something after a long time of nothing. It is too early to say for certain, there is still much to be resolved, and it could still take a while. It could still dip into nothingness again. A sign so small it almost feels silly to take it seriously. But this is how it starts we’ve been told. Engraftment. A glimmer, a glint. A little flash on the horizon. Viral smiles faintly.

I think of something N, the nursing assistant with a flower-bright face and a lovely simplicity of heart, shared not long ago when I asked her if there was a quote or any words of wisdom that particularly resonated with her. “Oh! Let me think,” she said. And then after a few moments of pause–

“Anything’s Possible.”

0.1.

Anything’s possible.

We met Dr. Robert Negrin on the first morning after Viral’s admission to the hospital. He ran the Blood and Marrow Transplantation division at Stanford for twenty years and has over 265 papers, 40 book chapters and a book to his name. He is Vice President of the American Society of Hematology with successive terms of President Elect in 2025 and President in 2026. In short, a leading light in the field. His manner is kind, reassuring, approachable. He chats with us about his time volunteering in Cambodia, offers empathic words on hearing of our concurrent treatments, and shares a little bit about the incredible advances he’s seen in the transplant field over the decades. He was the one who recommended Living Medicine to us.

Sharing an excerpt from the book here, as it offers a compelling window into the surreal and stunning world of the medical journey we find ourselves in the midst of…

Preface to Living Medicine: Don Thomas, Bone Marrow Transplantation & the Cell Therapy Revolution, by Fred Applebaum

Even though I’ve been doing it for decades, every time I perform a bone marrow transplant it seems like magic. Take, for example, Kent Klingman, a thirty-four- year-old father of two young girls who is dying of leukemia. Instead of letting the disease have its way, we treat him with a combination of chemotherapy and radiation — so toxic it will permanently destroy his ability to make blood or fight infection and kill him in a matter of weeks if we do nothing more. We wait a few days for the toxins to clear, then take bone marrow cells obtained from the hip bone of an anonymous donor halfway around the world and inject them into Kent’s vein. Here’s where the magic starts. While most of his blood cells zip down the middle of his blood vessels like cars on a highway, the bone marrow cells slowly roll along the vessel walls, like window shoppers on the sidewalk. When they get to the right address, a specific spot in the bone marrow, the marrow cells stop and slither through the vessel wall into a unique niche, vacant because we’ve just poisoned the previous unruly tenants. Once in their new home, the transplanted marrow cells start doing their job, producing red blood cells to carry oxygen, white cells to fight infection, and platelets to prevent bleeding. While this is happening, we treat Kent with powerful immunosuppressants to prevent him from rejecting his new marrow and, vice versa, to keep the marrow from rejecting him. Then we wait.

It takes time for the new marrow to get going. For the first week after transplantation, Kent’s blood counts are frighteningly low. Healthy people have 5,000-10,000 white cells per microliter (ul) of blood protecting them from infection; during the first week after transplant, Kent has none, zero.* A normal platelet count is 150,000-450,000/μl; he’s lucky to have 1/100th of that, not nearly enough to prevent spontaneous bleeding. By using potent antibiotics and platelet transfusions, we keep Kent safe, but only for a while. Ten days after transplantation, there’s no cell recovery. This is when I start reassuring him and his family that the marrow graft will soon start to function. How do I know? Because it always does. Well, almost always. Perhaps one in a hundred times marrow fails to engraft. While outwardly I’m reassuring Kent, inwardly I’m praying that this isn’t one of those occasions. Then, around day fourteen, a few white cells start to show up in his blood–at first just a trickle, and then a steady stream. Finally, we exhale.

And now more magic. Even though Kent’s cells and his donor’s are genetically different and should reject each other, during the next few weeks the transplanted marrow learns not to lash out at its new host, and Kent’s body begins to accept its new boarder. Over the coming months, Kent will fully recover, becoming a healthy chimera, a person who is 85 percent himself but 15 percent the cells of someone else. Those adopted 15 percent produce Kent’s blood and his immune system, and, perhaps most surprisingly, serve as a form of living medicine, constantly patrolling his body for any residual leukemia and destroying it. To be clear, bone marrow transplantation doesn’t always work, but when it does, it’s magic. Because marrow transplantation is an effective treatment for almost every blood-based disease, it’s now performed over 100,000 times a year…

***

We are in the waiting phase of the journey. The doctors are monitoring closely, looking for the first signs of uptick in that bottomed out WBC count. “You’re in the home stretch,” they tell Viral, “It’s only a matter of days now.” In the meantime he must navigate the expected and near-unavoidable side effects of having zero immunity in a body so recently bombarded by aggressive chemotherapy and a slew of other potent medications. His regimen includes a battery of immunosuppressants, antibiotics, antivirals, anti-fungals that are administered with clockwork regularity, some in pill form, others through injections, still others slow-dripping through the transparent tubing that snakes from the various bags hung on his IV pole into the Hickman catheter in his chest. While the drugs offer a significant degree of protection, the ‘x’ factors are considerable and ever-present.

After his post-transplant CRS fevers were successfully controlled, Viral experienced an unexpected and dangerous degree of fluid retention. Within a 24 hour period he gained close to 20 pounds– a result of his body being unable to adequately release the hyper-hydration fluids he was being given to protect his organs from the chemotherapy. His oxygen saturation levels dropped, and so did his blood pressure. He developed a cough from the fluid accumulation in his lungs. His abdomen, legs and feet were visibly tight and swollen. In the immediate wake of this discovery, an expert from the oncology ICU was alerted. It was unclear for awhile whether he would need to be shifted to their care. He was put on oxygen and a bed alarm (meaning an alarm would ring, should he ever get out of bed without a nurse present). A delicate balance would need to be struck between the body’s multitude of very real fluid needs, and the addition of specialized diuretics and biologics into the equation to help the kidneys release the excess.

All this in addition to the “normal” side effects of a transplant. This course of treatment places the entire GI tract under siege. Digestion is profoundly compromised, painful sores can and do develop in the mouth, and even deep in the throat. Unforgiving nausea and a near total loss of appetite grip the system. Other side effects like dizziness and low blood pressure can be further destabilizing. Sleep is elusive and must be snatched in the irregular windows between being treated, tested and monitored day and night. And in addition to all these things is the awkwardness and discomfort of being tethered to an IV pole 24 hours a day, for days on end.

Over the past week there have been many ups and downs. There continue to be many periods of acute pain. Through the rockiest phase the doctors have been impressed by how much healthier Viral looked in person than his numbers appeared on paper. His warm demeanor, mental composure, and capacity to engage, even in the midst of deep discomfort, account for part of this, but some of his physical resilience is unaccountable. It can neither be anticipated or explained. It is a blessing.

Currently his body has released a good percentage of the accumulated fluid, and the various side effects are being skillfully managed at the medical and mental levels. In so many ways Viral has trained for this marathon of endurance in more ways than he could ever have realized at the time. His doctors are happy with his progress. And I am in awe of his quiet capacities that continue to reveal themselves as push comes to shove, ‘where the spirit meets the bone.’

A more current update coming soon (for now, we are grateful to share that through various intensities, Viral is doing well and is relatively stable considering this fundamentally de-stabilizing stage of the process). In the meantime this flashback from Day Zero, and a photo from Mother’s Day.

The phone rang a little past 2AM. It’s Viral on the other end. “I’m fine,” he says, his voice calm and clear. “But I had a small accident. I got dizzy in the bathroom, and somehow hit my head and bruised my arm. They are going to do a CT scan.” Nipun, Guri and I head straight for the hospital. With his low platelet counts any impact to the head could be extremely dangerous, and his transplant is less than twelve hours away. The night nurses are as puzzled as Viral is about what had happened. He’d shown no prior signs of dizziness and had no clear memory of stumbling. The bumps on the side of his head are not small ones. We ice them and wait for the scan.

“Uncertainty is a feature of life, not a bug.” Over the weekend I’d come across notes from a long ago meeting in which Viral had shared that line. Over the course of the day I ask him to unpack it from this moment in time. Here’s what he had to say:

“Uncertainty is a fundamental quality of reality. It’s inherent in the emerging truth of how things unfold. But we are pattern seeking creatures. This makes it hard for us to stay with uncertainty. We try to create stability and predictability through our mental models, and this is a very adaptive thing, but it is also limiting because whatever mental model we have creates, some amount of confirmation bias, and some amount of inattentional blindness. When we encounter the newness of a moment we tend to filter it through interpretation. Interpretation is based on a pattern, and patterns are based in the past. But if you find a way to stay with uncertainty then you are essentially discovering at your edge. Your past experience can become a gateway, instead of a boundary. Past experience is not a bad thing, it’s just that if we are not present to the “past” aspect of the past, then instead of it being a tool it becomes a limitation, because we are going to parse everything through it rather than leveraging it for actually learning in the aliveness and possibility of the present moment. Staying with uncertainty actually generates a contact with aliveness, because it’s the nature of life. It becomes a feature when you can actually meet it with a sense of creative possibility and potentiation.

I don’t want to romanticize it, but I think some of this stuff is just about the power of compounding interest (pun intended :)) at this intersection. If you get curious about that place where your attention meets the unknown you start to build a muscle for discovery. And over time this becomes much more attractive and nourishing than being swept away by an unconscious pattern. Often that is what fear is– a strong, unconscious pattern. So for instance with the CT scan — “Oh my God, what could it be?” My mind doesn’t go there and I think that’s the result of a different kind of pattern. A pattern of unpatterning in a way.

I am flooded with the textures and nuances of the present moment. What does it feel like to be wheeled in a high-tech bed through the corridors of a sparkling hospital in my Darth Vader HEPA mask, to receive the concerned looks from the care team around me who’d seen me completely stable just hours before, to notice the precise skill of the transport technician who gracefully maneuvers the bulky contraption of the bed, and the IV pole through narrow openings, to dialog with the CT technician about the transformations he’s experienced in his field…. Partly what I am describing here are just the remnants of the experience. Experience itself is tangible and grounded in a profusion of sensations. Registering these moments and more are what my own mind moved towards within this particular experience. It had that availability. The availability to move beyond certain kinds of patterns and attune to more of the many other possibilities that always lay dormant in each moment. I’m grateful for this capacity whenever it arises. If my mind was fixated on a pattern — then I’d be interested in exploring what that state has to reveal. The broader point is having the availability to be present to, interested in, and nonjudgemental about any of my experience.“

***

A few hours later the scans come back:

All clear. Onward to what(ever) comes next.