Passing Through Twilight Zones
Christa Hillstrom is the daughter of Scott Hillstrom, one of the leading developing health care franchisers in the world. Last winter she worked with us on a documentary film about Sewa Ashram. Here is a letter she wrote to her friends around the world. Please take your time and experience rather touching moments at Sewa Ashram.
Passing through Twilight Zones
by Christa Hillstrom
“He came to Simon Peter, who said, ‘Are you going to wash my feet?’
Jesus replied, ‘You do not realize now what I am doing, but later you will understand’
…When he finished washing their feet, he put on his clothes and returned to his place.
Do you understand what I have done for you?”
– The Book of John
I never thought I would be the kind of person who quotes the bible at the start of a letter. Really, that is uncool, right? But someone told me to read this part of the bible recently, and I picked it up and found this kind of interesting. I like these parts when Jesus says weird, cryptic things and everyone around him says… “Huh?” and shrugs at each other. So I read this part, about Jesus washing people’s feet, and them saying, “Why on earth would you do something so pointless, especially to those who are considered to be inferior to you?” And Jesus tells them, yeah, you don’t get it now. But you will.
There has been a lot of death around lately, and this is pretty new for me. Every death I’ve experienced in my life has come to me first over the distance of the phone, but I’ve never really been right in the crux of it. And every time, without fail, there was the general consensus that death was a big deal….
The first week we were here, an old man in the clinic died. I didn’t know anything about him. He was wrapped in a white sheet and placed at the front of the meeting hut the next morning, with a few candles around him. At the front of the room, kneeling on the floor, Nino pointed out a few of the mentally challenged boys who were gazing at the body and said, “They don’t understand really.” Sitting at the very back, I hadn’t noticed the body up there before that, and had to crane my neck to make it out. I was in the same boat. I didn’t understand either.
Of course I understand the fact of death, the cause and effect of it—that poverty induces disease which, unchecked, leads to death. But there was something else that sunk inside me a little, something I knew that I DIDN’T understand. The mundane, straightforward everydayness of it. That was the first death.
The next time, I had even less of an idea who it was that died. One morning, Susan and I had to catch a ride into town to meet some potential donors that were visiting from the states. Most days, one of the little ashram ambulances makes the dusty trek into Delhi, rambling through all the roadwork and smog to bring OPD patients in for hospital check-ups. Suresh sometimes hitches a ride in on his way to the TB hospital, and there are sometimes other hangers-on who need to go into the city for some reason or another. This day, Sarin, who has spinal tuberculosis and has been bed-ridden for the past 3 and a half months (if he stands up, it apparently might shake up his system, dilapidate his spine, spread the TB further through his body) was lying across the back seat. Susan sat with a few other people in the front seat. I was in the middle seat, squeezed in front of Sarin with several other people, three-fourths of my limbs asleep. In the back were Suresh and about 4 other men, and the dead body. It was wrapped in white gauze and gently folded into the seat. The ambulance had to stop at several different places to unload all these living people, and at just one place for the dead one. I remember bumping along the road to Delhi for about 45 minutes. Since there were so many people in the car, no one felt awkward not talking. There was an atrocious radio station blaring—all tinny and high-pitched and loud. After the DJ finished babbling about something annoying, the next song came on. It was Justin Timberlake. SexyBack, that clubby pop-anthem. I felt like, WOW—can two such completely different-seeming worlds really occupy the same planet? I suddenly, unprepared, felt like bursting out laughing. I made eye contact with Susan in the front seat, who had looked over at me too. Life throws together some bizarre juxtapositions, probably to give you double vision, occasional moments of seeing clearly how absurd it all can be. Jolting through the smog, so many clowns piled into the ambulance, a dead body wrapped in the backseat. And everyone else staring stoically, sturdy-mouthed, forward in the same direction. Justin Timberlake encouraging us all to get our sexy on.
The third death was a woman named Kamala. She arrived here one day when I was gone, and when I returned I was very disturbed at the sight of her. Parched and leathery and without any fat, she suffered extremely. I don’t know how old she was, but she seemed like a haggard old woman. When I went with Doctor Asheesh, the doctor who visits a few times a week, on his rounds one day, he explained that her larynx had been destroyed, probably from poisoning. Poisoning by whom? I asked, shocked at the way the spot between her throat and chest bubbled up and down in shallow attempts at breath. The doctor shrugged, “Her family probably.” I stared back, waiting for more of an explanation. “But why??” He shrugged again as if it was a stupid question. Why wouldn’t her family poison her?
Kamala’s systems were so destroyed that she couldn’t keep any food down. She vomited food without digesting it, and she died during the night last week. I had gone down to the clinic late at night to go to the bathroom. She had always unnerved me because I didn’t know what to say to her or how to touch her. There were two women lying in the room, and both were awake. One of them, Sakuntala, I felt more comfortable around (and her story is awful too—she came here with an open wound in her abdomen from a botched c-section. Her husband took off and left her, taking their son, when he found out they lost the baby. The doctors, apparently, without much backup, argued that she let it die on purpose because it was a girl). As I was leaving the clinic that night, I gave Kamala a weak, fleeting smile, but I actually squeezed Sakuntala’s foot affectionately. And that was the night Kamala died. Even that night, I was feeling like I should do something more than throwing a cowardly smile in her direction. But I felt so awkward, like I just didn’t know WHAT that something more was. I was feeling that weird imposition of wondering, OF ALL THINGS, about how to abide by the rules. Like there is some type of decorum to be enforced in a situation like that. Again, that domineering rubric of shoulds and shouldn’ts. Why is it able to silence so many things in us?
The fourth death was again someone whose name I didn’t know. This time I started questioning myself, ashamed that I didn’t know most of these peoples’ names. Why not? How awkward, how easily distracted was I, that I didn’t pay enough attention to people closest to the end? Had I been patting myself on the back in some way for putting in the time and effort to build relationships with, well, the people who were easiest to build relationships with? The people who made ME most comfortable?
Susan and Nino and I were at the breakfast table talking about something or other that doesn’t seem important, when someone ran to get Nino. He left the table and didn’t come back. One of the TB patients had died during breakfast. He choked while he was trying to eat his porridge.
“Who signs the death certificate?” I asked Nino later. “I do,” he replied. “Do you need some kind of authority to be able to do that?” “No, not really.”
Nino was gently touching the body. “He’s still warm,” he murmured. “It seems so wrong to burn a body just a couple of hours after death. There’s no pulse, no breathing. But he’s still warm. I feel like there is still some spirit in him. Let’s leave him for awhile.”
Every once in awhile, when you’re walking through (or fumbling through) a story as nuanced and contoured as this one, this ashram’s, you stumble across something small and rough around the edges and it presses into you, like—this, now this is unbearably beautiful. You don’t even understand why. I felt this very strongly, and I had my camera in hand, but… I felt like I couldn’t film it. I’m still not good enough at that yet. Some things seem so intimate and raw, and even though you want to communicate how deep they go, it’s hard to take out a camera. To bring all this otherness, this audience, into the circle. To take ownership of the story. I think it requires the gift of incredible trust from those who are sharing their lives with you. But how do you take custody of someone else’s death? And what if you do it wrong?
Thoughts like these keep me awake at night.
The fifth death arrived by rumor—Suresh came that same morning to inform us that the patient I had filmed in the TB hospital a couple of weeks previously had died. The emaciated one. I had filmed him for half an hour, and the extreme reality of his emaciated and neglected body had shaken me into some level awareness. But I had never gone back to see him. Or even asked Suresh how he was doing. Nino turned to me, “Maybe he’s thankful that he lives on in your footage.”
I felt my heart sinking. Is that really all the legacy he leaves in the world? The most detailed imprint of himself? Tape 6 of 25 on the “Sewa Ashram Video” hard drive? I understand that much can happen in people, untapped surprises they didn’t know were there, just from tape 6 of 25.
But it depends on how you do it.
And what if you do it wrong?
What if you fall out of tune with yourself, and you do it absolutely wrong? What if you get confused by all the shoulds and shouldn’ts, the anxiety of self-assertion? What if you forget what you’re doing this for?
And what if no one reminds you?
The other night, I came into the office. Kaye told me that a man was probably dying in the clinic that night. His name was Radju, and he was a returning patient. His HIV had become active. I walked down to the clinic a few minutes later. Earlier in the night, he had been shivering and several people had surrounded him, filling his bed with hot water bottles and spreading more blankets over him and holding his hand. I don’t know where I was at the time, probably doing something unimportant. By the time I got to the clinic, he looked like he was sleeping, but a bit fitfully. He moved very little, but his brows were furrowed. I stood there and looked at him, and thought about touching his elbow or stroking his hand. But I didn’t know if I should, or if it would disturb him, or if he would even like it. I didn’t know if I was supposed to, for some stupid reason. So I walked away, feeling awful at myself, trying to make out the shapes in the fog that were reigning in so many of my choices and actions these days.
But Radju didn’t die that night. The next morning, I went to the clinic after breakfast to see how he was doing. Nino was standing there with him, his hand massaging the top of his head. Radju was shivering feverishly with shallow breath underneath several layers and hot water bottles. His eyes were rolling back and forth, fluttering open and closed. Nino called me over there and said, “The sickness has already reached his mind. He becomes very confused. But look how much effect it has, just putting your hand on his forehead.” I watched Nino for a few minutes, the way he covered Radju’s eyes with his fingers to close out his fears and distractions, to send him sleepward. The way he touched his forehead and his chest. The way Radju visibly relaxed.
How frightening it must be, dying. Especially if you’re fevered with confusion, not understanding what’s happening to your body and what’s about to happen to your soul. And alone. Imagine shivering to death by yourself. So just having someone’s hand there, with all their awkwardness and uncertainty and inability to FIX things—it must be so relieving. So much easier to close your eyes knowing that someone, anyone, has some kind of vigilance. That you won’t die while nobody’s watching, unnoticed, slinking out the back door.
Nino left me there to put my own hand on Radju’s forehead. Maybe Radju sensed that my touch was a lot more unsure, but I felt a kind of awkward grace back from him. I rubbed the top of his head a little, and he looked up at me with a weak, crooked smile. It’s the kind of graceful awkwardness you stumble over when two of you try to be human for each other but you don’t quite know how to do it. I guess there’s no right or wrong way to do it, as long as it springs from sincerity. And there is something good in that.
We are such creatures of mimicry, I think. We can be stocked with all the best intentions—beautiful intentions, compassion and care—and not know how to use them. Not know how to respond to the world in the right ways. Think that the rules of should and shouldn’t somehow usurp what we feel is the right thing to do. I’m certainly not good at building intimate bridges. I have never been good at that. I’ve often let genuine compassion be squashed by the timidity of not knowing how to respond to things.
But I guess that’s why I now have so many people around me teaching me, more than anything, how to be courageous. How to STOP on the street and speak to suffering when you don’t know what to say but you know it should be something. How to make eye contact with someone who catches you secretly crying and not rush to wipe the tears away. The simplest things, which should be obvious. How to touch someone who is dying.
So all that Book of John stuff, the foot-washing. That stuff really got me. Who washes their own feet, let alone someone else’s? How long can they realistically stay clean, anyway? What’s the point? Washing someone’s feet is a little bit absurd. Take it from me—mine get clean in the shower and by the time I walk to the clinic to put the bathroom key away, they’re already covered in dust again. Why would Jesus do that? Just to show everyone how it’s done? How to take care of each other? To give us new ways of thinking and feeling about another person?
There is a boy named Mukhtar here, and he is not a “success story.” With a worn, weathered face, his history is rough and punkish. He is HIV positive. He is hoarse with outspokenness. He sometimes gets feisty and resentful. He sometimes argues loudly with people. He sometimes relapses into heroin use. He was not on the initial list of potential people to profile here, because this boy—you can’t wrap him up in an easy package. But I’ve watched him for several weeks now. He handles patients with more grace and care than anyone. He suffers quietly with them. He is one of the hidden jewels. He’s one of the real things folded into this story. Wrenching, raw, and rough around the edges. He goes very far down if you know how to look.
That first time in the clinic with Radju, when I was feeling a little awkward, Radju tried to tell me something. Mukhtar was walking by and leaned his face softly toward Radju. He placed his hand on his cheek with such convicted affection that I, standing dumbly by, felt strengthened. I wondered how Mukhtar felt, taking care of someone dying of HIV like this, and knowing that it could realistically be his own future. I wondered at how sure he seemed, compared to me. I paid attention so I could be more like that.
A couple of days later, I interviewed him on a rooftop while people worked in the circular gardens below. Susan and I asked him that question—how it feels to pour yourself into taking care of people dying of the same disease you have. How much it scares you. How much you love them. Maybe it’s just as useless to put all your energy into holding the hand of someone who won’t get better as it is to wash someone’s feet.
Mukhtar replied to the question in Hindi. I didn’t even know what he was saying right then, but he ignited with such intensity, such rawness—his voice started cracking and he cried without trying to hide it. Before I even got the translation, I found myself crying too. And I didn’t try to hide it either. I almost didn’t need to hear the translation. I understood what he was saying.
Later that day, Susan and I talked about how the very fact that he feels things so deeply is also the reason he relapses into drugs. He feels things so much that they sting, and he doesn’t know how to deal with it.
And thoughts like THESE keep me up at night.
How do you take custody of other people’s grief? Or communicate the tiny ways they hope for things? How do you hold up that responsibility? How do you remember to do it faithfully?
How do you do justice to truth once you’ve tried to really see it?
I like to think that we have to be examples for each other— remind each other how to be, keep one another accountable to truth. Embody the best intentions. To really, actually act it out. Take someone’s shaky, awkward hand (like mine) and show them how to use it. Even, like Mukhtar, when you don’t realize how much you have to teach. Even when it feels absurd.
Two nights ago, Susan went to the bathroom late at night. She came back and said, “Poor Radju, he just doesn’t seem like he’s doing very well.” “Really?” I responded. “What’s he saying? Is he feverish and moaning? Do you think we should go down there?” She considered this for a moment, “I don’t know. Yeah, he’s just kind of moaning and seems generally miserable.” We say in silence for awhile, thinking about what to do. I was already in bed. It was late. It was cold out. I was extremely tired. Susan was getting over her own illness and was also exhausted. We decided not to go down there that night, and check up on him in the morning. Early the next morning, I went to the morning meeting and Susan ran to the bathroom again before meeting me there. She ran down to get the bathroom key from the clinic and the man in the bed next to Radju’s motioned to her. “Expired??” he was asking, referring to Radju. Susan pulled the blanket back and met the open eyes of Radju. Yes, he was expired.
After the meeting, when I found this out, I went down to the clinic and watched Mukhtar and Nino wrapping the tiny body of this grown man up in white gauze. I stood there as dumbly as I usually do, thinking, don’t I ever learn anything? And wow. Look how life can be wrapped up to such a narrow circumference. Look at how small you can make him. Just. Like. That.