Viral spiked another fever yesterday. The doctors say this could be a positive sign of engraftment taking place, of the new cells beginning to make their home in his marrow. But to make sure they aren’t missing a hidden infection, they order an array of tests. One of the tests catches the presence of a specific kind of bacteria. A targeted antibiotic along with other medications are swiftly administered. In the meantime it is a dance to control his fever sufficiently enough to be able to transfuse him with the platelets and red blood cells he needs. They chase his temperature with Tylenol. His oxygen saturation dips at night so he is put on oxygen and the bed alarm again. Over a 24 hour period there are interventions of one kind or another almost every hour. He is very fatigued– how could he be otherwise given this schedule and all the powerful interactions in play at all levels of his bodily being?
Last night, I watch as he lies quietly in bed, his eyes closed, his chest and legs tremoring slightly, his breathing sometimes labored. His face drawn in pain. He is so close that I can rest my hand on his forehead. I feel his fever and with it, a distance I cannot cross. This is his experience to go through. I can feel an echo of my projection of what he is feeling in myself, but that is a reflection of a reflection. Not the thing itself.
Pain is a connector, in that one way or another, we all feel it. But it’s also intensely private. An island. A kingdom of one, with no proxies. It is not given to ordinary mortals– no matter how dearly we love– to stand in for another’s pain. I suspect there is a hidden wisdom to this design, though at times it has felt cold and unforgiving. The bone marrow unit we are in has seventeen rooms for patients. We are lucky. Not all patients in pain are given private rooms. Though pain itself is the most private of rooms. And it demands patience. Viral has that in spades.
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The evening of Viral’s admission into the hospital, we had just unpacked his things in the cozy room he’d been assigned to, when we were informed that a room with a bigger bed for him was available. The bigger bed was in a considerably bigger room. We would later learn that the nurse in charge that night had seen Viral and couldn’t tolerate the thought of his needing to cram a six-foot frame into a too-small hospital bed during the course of the BMT process. We moved him into the new room and rejoiced in the extra space. The fact that it had a recliner instead of a bed for overnight caregivers didn’t bother us. But it bothered someone else. A few days later one of the head nurses said they were going to move us into one of their (even) bigger rooms , one with a proper sofa bed, as soon as it became available. “You’re going through treatment yourself. We can do better than having you sleep in a chair! And he needs more space to move around.” She was true to her word. Within days we moved again. And were moved all over again by the kindness of those around us. Their seeing eyes, their tender hearts, and practical, capable hands.
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Live plants and flowers aren’t allowed in the BMT unit given the possibility of fungus and mold [dangerous for immunocompromised patients]. But we have tried to bring a little bit of Nature’s grace and goodness into the little nooks of this room. Little touches to provide relief [without introducing risks,] to the clinical sterility and severity of the typical hospital room– I knew from the very beginning that none of this was directly for Viral. It was for the nurses and the other members of Viral’s extensive care team (more than 5 dozen individuals in all, who enter this room to serve his healing journey in different capacities.) I wanted them to feel a sense of joy as they stepped into the room. I wanted the space to surprise them, make them smile, and breathe a little more deeply. I knew this would mean much more to Viral than the decorations themselves. While Viral appreciates the little things, of life deeply and is wonderfully aware of the beauty he comes across in the world, he doesn’t tend to seek these things out, or be deeply affected by their absence. It’s a form of detachment that I certainly don’t have to the same degree. As the Chinese Proverb goes “When you have only two pennies left in the world, buy a loaf of bread with one, and a lily with the other.” Left to my own devices I think I’d end up buying two lilies and a slice of bread (or, let’s be real, a cookie.)
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Today was a “get a handle on things” day. On the transfusions, the antibiotics, the array of pain mitigation options and more. Sri, Viral’s college roommate, a remarkable doctor-poet and transformative force in the world, has been with us at each step on this journey. His input helps us cut to medically important details and ask the right questions. The infectious disease specialists consulting on the case are wonderfully encouraging about this being a very controllable strain of bacteria. By their estimate the critical engraftment process would not be set back more than a couple of days by the infection. It is quite rare to actually identify the specific cause of infection in cases like this. Knowing the entity makes it much easier to treat efficiently and successfully. Viral’s vital signs are showing strong stability today, another good sign. And of course Viral managed to somehow in the midst of their conversation, to segue into telling them about Aravind, [Much to my amusement and amazement, from his hospital bed he is constantly finding new people to gift copies of Infinite Vision and other books and goodies to. He tunes into their aliveness and then thinks of ways to honor it. I love being part of Team Make Someone’s Day on the BMT Floor.]
Today has been a full day. He is still navigating a lot of intensity, and there is yet a ways to go. But he is doing better. I know he is strong enough to welcome any fate. But it gladdens my heart, it will always gladden my heart, to see his pain ease, to see the return of a subtle and deep relaxation in his face as he sleeps.
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Hospital rooms aren’t particularly known for their aesthetics. But they are sacred spaces- hallowed by the rawness of the experiences they hold– of suffering and the impulse to ease it for another, of pain and compassion, of uncertainty, loss, healing and transformation. So many core realities of human existence are faced within its walls. They can be honored as such. In every room we’ve been in, we’ve sought in small ways to do that. To bring our own offerings of beauty, gratitude, mindfulness and joy to these potent spaces. More details on this later. For now just this picture of the little nook I get to sleep in every other day, when I alternate the night shift with Nipun.
There are no unsacred places; there are only sacred places and desecrated places.
– Wendell Berry
The Poetry Of 