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 Poetry Of 