A Lost Sheep
At first, the hallucinations were entertaining. I looked up at the wall of my hospital room and saw children’s handwriting scrolling down the flat surfaces, like a screensaver. It was never print. Always handwriting, and always the slightly uneven scrawl of children. When I shut my eyes, another colorful spectacle presented itself: big cheap polyester blankets, red and yellow, slowly descending, shedding bits of fluff. Even the grimy grout between the tiles in the bathroom had suddenly become full of entertaining messages: “SLUG BAZAAR,” “JESUS PEEPS,” “WHISKEY TRY IT.”
I was in Bethesda, Maryland, at the National Institute of Health. A team of smiling doctors had just injected 108 billion lymphocytes into me. The cells came in a squarish IV bag that reminded me of packages of Taiwanese drinkable yogurt. These lymphocytes had been painstakingly genetically engineered to fight my cancerous tumors, then multiplied until there were around ten times more of them than existed in a normal human body. I had just had a cheery ceremony to celebrate the birth of “Melissa 2.0”—new immune system, new birthday. Everything was going great.
Along with the lymphocytes, I received four doses of IL2 (aldesleukin), a chemical that generally helps immune cells grow and boosts immune response but which also does some horrible things to the body. As I’ve been told, when under IL2, people’s kidney function tanks, causing hallucinations. In extreme situations, people’s airways can collapse. I had been warned about the hallucinations and the other potential acute reactions, but I was sure I would be fine. I could deal with some trippy visions. Besides the very minor detail of cancer, I was young, healthy, and strong.
On Friday, the first day after receiving my therapy and the first doses of IL2, I felt mostly fine, though I started to get tired. On Saturday, slightly weird hallucinations started.
The hot water kettle on the window sill sat just behind a chair where a coat was draped. It looked, from my bed, like a head above a body, as if one of my cousins or aunties was sitting there. I kept trying to ignore this because it was weirding me out, but eventually I just embraced it. “Hi, Auntie,” I would say, waving from my bed at the silent sentinel in the corner.
On another occasion, I was sure that my son was sitting in the room, just on the other side of the IV pole. I knew he was there. He was observing everything that happened in the room and watching Netflix with me. Hours later, I checked the space. No son. Sometimes people appeared in the room, like the blonde lady wearing a red top and black pants crouching at the right side of the bed, who disappeared when I took a second look.
I recorded these initial observations in my journal with steadily disintegrating penmanship. And then, my notes abruptly stopped.
Over the next few days, I lost track of time. I lost track of where I was. I lost my grip on what was real. I lost my ability to walk or hold things in my hands.
I lost myself.
I have little memory or record of those missing days. I do remember once telling the team of NIH doctors how glad I was to be at “Huntsman” (a cancer center in Utah, not where I actually was).
I remember a sort of constant chittering sound in the back of my mind, like a robotic insect, as the visual hallucinations became corrupted (bits of broken script now scrolling down the walls and across the countertops instead of whole words or phrases) and everything sort of disintegrated into general sensory disruption.
I remember restless nights obsessing about things that weren’t real, like how there was an evil plot on the internet to create the opposite of glamour shots, taking everyone’s photos and corrupting them a little to make them wrong, but how there were people going around finding these corrupted photos and fixing them, always finding them and fixing them, always . . . I remember waking up from nightmares with a pounding heart, having had to escape mortal danger by bludgeoning an attacker to death, over and over again . . .
I spent my nights and days in other worlds, preoccupied with the troubles and anxieties of those other worlds, which had no connection to actual reality, the life I’d lived, the person I’d always thought I was. Only as the chemicals began to slowly leave my system, and my kidneys began to recover, did I begin to notice that I was still in the same hospital room, even the same hospital bed, as I had been in about two weeks ago.
But I was not the same person who had cheerfully presided over my own second birthday party. I was broken. I was mentally shaken and physically shaking. I had trouble walking and standing. I could not hold anything for more than five seconds before my hands would twitch and drop it.
Before IL2, I had been writing to the family email list daily with long, chatty updates. After going silent for several days, I finally tried to text my husband. I am grateful that these texts have been preserved as a sort of primary source, though I must say, the first time I had the mental and physical ability to re-read this text chain, I burst into tears because it was so painful. Since then it has become funnier to me. I have added clarifications in small brackets to make it more clear what I was trying to say:
they they will give me a flood [blood] transfusion because current me is still too psichy [?] and
scary and ubacle [unable] to use her phone
I thought I was at bjntman [huntsman] rather than at nih
Oh bother I really jane [have] turned into a dragon
:_._where is the stupid asterisk, I want to say *asterterik
Shoot I mean ? *aseerq *asterisk I rrlrthinnk that’s right
but I keep hitting myself on my fa face with my phone
oh buddy i am so sad and confugysed
is there a move [movie] irirle [title] aboiutr that
I have to give my hallucinogenic self some credit for two attempted literary references—one to Voyage of the Dawn Treader and another to the 90s film Dazed and Confused—but Joseph found the messages alarming. He called my cousin Mika, who jumped on a plane. The next day she appeared in my hospital room and started taking care of me.
When I saw Mika, I knew who she was. I had heard she was coming and was glad of it. But I couldn’t smile, and I couldn’t offer words of welcome. That part of me just wasn’t working either. Mika circumvented my lack of communication by rubbing my feet, which for many people in my family, myself included, elicits a sort of (blissful) Pavlovian reaction.
Over the next few days, Mika helped bring me back to myself, like a guide leading a soul back out of the underworld. She ordered food and coaxed me to eat. She updated me on family news. She took me on (very short) walks, holding onto a loop on the “gait belt” around my waist like a dog walker holding a leash. She kept a detailed record in my journal of the things I said and did. (“Now I’m like Joseph Smith. I have scribes keeping my journal for me!” she recorded me exclaiming the second day after her arrival.) She talked on my behalf to my husband, the Relief Society president, the members of the family, because I didn’t have the energy to make plans, be social, or otherwise have adult conversations.
Some things I found especially overwhelming. One was the suffering in the world. I know that this is a standard Buddhist tenet, a staple of moral philosophy, the most basic of basic truths, but I found it overpowering. I knew that as far as suffering in the context of the history of humankind goes, my days- or weeks-long struggles with back pain, drugs, mental confusion, physical disability, and so on were fairly small potatoes. All around me, and all around the world, in my own family, in my circles of friends and friends-of-friends, there was loss, trauma, difficulty, and despair. Because of my recent experience below-the-line, and still under the influence of some pretty powerful drugs, the weariness in the world felt like too much.
“Everything is so sad,” I wept in a phone call with my husband. “I’m just so sad.”
As I slowly regained my strength, mobility, and hand-eye coordination, I noticed I was also regaining religiosity, for lack of a better word. Once again I felt to read the scriptures. Once again I felt to pray. Each time, prayer amounted to singing Psalm 126, “Shir Hama’alot.” I had heard this beautiful psalm sung in Hebrew by Jewish friends after Shabbat and Passover dinners, and one of my pass-time-in-the-hospital projects before IL2 had been to learn the tune and lyrics. Over the course of thousands of years of history, Jewish believers certainly had many opportunities to lean into the lines: “Restore our fortunes, O God, as the streams revive the desert; those who sow in tears shall reap in joy.”
Still, I was deeply troubled about the emptiness I had felt and to some extent continued to feel. Where had God been in my darkest of dark places? Why was “religion coming back to me,” like a rebooting superego, only several days after my ordeal, only when I was once again becoming rational and self-sufficient? Was that what religion was? God is for the sane, the coherent, the well-dressed, those who discuss theology and type accurately on smartphones? But not for the lowest of the low, the saddest of the sad, those stinking and vomiting and trapped in the grip of their own dark preoccupations?
The hospital chaplain, Ellen, was a kind and wonderful person. She had helped officiate at my boisterous “cell ceremonies” in the earlier part of my hospital stay, bidding farewell to my old immune cells and welcoming the new. She had made little fluttery flags with plastic knives and strips of printed paper that read “Go Go Melissa 2.0!” that were taped to the wall of my hospital room. Several times, awaking from confused dreams, I would see those flags and try to wrap my head around the fact that I was yet in that room. She knew I was a Latter-day Saint, and we had had pleasant, stimulating conversations about interfaith ministry and theodicy.
Now she was coming to see me on the other side of something huge. We hadn’t known each other long, but I felt as if she would find me a different person. When last I saw her, I had been wearing my own normal-person clothes; now I was half-naked in hospital scrubs. The person she last conversed with was Melissa Inouye: historian, author, faith-promoting-essay writer, professional religious-y person. That person now felt light-years away—in this moment, completely inaccessible.
We sat quietly.
“I didn’t know who I was,” I told Ellen.
“I didn’t feel God,” I said. “I was in such a deep, dark, place. But God wasn’t there.”
My eyes filled with tears.
“I felt alone,” I said.
Ellen was silent for a while. Then she told me a story she had heard about a sheep who went missing. After years the shepherds finally found him hiding in a cave, fleece overgrown and matted, barely able to see.
“Maybe you were a lost sheep,” she said. “You were in a place where you couldn’t see or feel God, though God never stopped being aware of you.”
On Sunday, five days after Mika’s arrival, the doctors declared that I would be ready to go home on Tuesday. I had graduated from my walker and my gait belt. I was eating three small meals a day. I had regained much of my hand-eye coordination. I was still really tired.
On Sunday afternoon, when my brother Abraham came to the hospital to pick up Mika for her afternoon flight, he wore Sunday clothes and brought the sacrament. He knelt at the side of my hospital table and blessed the bread, then the water.
I found these blessings incredibly moving. I wept. At the time, however, I couldn’t really explain why.
Surely part of it was the familiarity of a comforting ritual, a return of some of the structure of my normally highly structured life, a recollection of my family and community.
But now that I have had time to process, I think what I was feeling was also a gift from the Spirit. It was the Spirit of Christ waving for my attention, beckoning toward a new understanding of what it means to be broken.
At the Last Supper, Jesus presented his disciples with broken bread, to represent his broken body.
So often we talk about Christ as the lamb without blemish, giving us images of a nice, clean, fuzzy white lamb. But these photo ops occur at a moment in time before the lamb is slaughtered, gutted, and butchered. In the course of the sadistic, gruesome process of crucifixion that drove the breath from Jesus’s lungs and overcame his great heart, Jesus’s body also manifested infirmities inherent to physical mortality—dirt-encrusted, sticky blood, stale and stinking sweat, tense and trembling muscles. For at least a small moment, his mind was also beset with a piercing question shared by so many who suffer in loneliness: “My God, my God, why hast thou forsaken me?”
Perhaps some might think that it is impertinent to so directly describe a shaking, stinking body if that body is the sacred body of Christ, or to dwell on perhaps the most difficult moment in Jesus’s life, when he felt forsaken and utterly alone, when his usual assurance about his relationship with God was broken. At this moment he was, in some ways, “the least like himself” in the sense of the Son of God who saw the bigger picture and wielded power over the elements and over death itself. Yet in this moment he was, in other ways, “the most like himself” in the sense of becoming the Savior who gained healing power through his own mortal experience.
He who called himself the Good Shepherd also knew what it was like to be a Lost Sheep.
Perhaps this sounds blasphemous to some. But this is where the prophet Alma’s discourse on Christ in Alma 7:11–12 leads us: “he shall go forth, suffering pains and afflictions and temptations of every kind . . . he will take upon him the pains and the sicknesses of his people. . . . and he will take upon him their infirmities, that his bowels may be filled with mercy, according to . . . their infirmities.”
Christ shrank from none of the bitter indignities of mortality, in order to be someone who is not insulated from our difficult lived reality. If you only live in a beautiful, prosperous world in which the beautiful and righteous prosper, then people who spent the day curled up in pain are not for you, and you are not for them. But through his hard-won experience of mortal griefs and sorrows, Jesus sees us, knows us, is with us. He was the lowest of the low, the saddest and most “confugysed” of us all.
Since the beginning of the human experience, humans have been trying to make sense of pain. But sometimes there is no sense. Sometimes, rich as they are, cultural practices, religious rites, and thoughtful theologies simply fall short of the realities of lived experience.
So, at least for now, I am unable to conclude with a coherent declaration that ties everything up with a bow. I have nothing systematic to offer our theologies. Only this am I able to say:
I know how it feels to be lost and broken.
And so does Jesus.
Melissa Inouye is a historian specializing in modern Chinese history, Christianity in China, women and religion, and the history of global Christianity.
Art by Alyce Bailey.