by Sunita Puri
“But won’t that just encourage false hope?” I said, sighing with frustration. “How can I honestly tell them that when the fact is that the kid is just going to keep getting more infections until he dies some horrible death? You think I should just stand back and let them keep praying while their kid suffers?”
“The parents may see their son’s sickness as a test from God, and they are responding with more prayer and faith,” my mother replied. “I’m not saying that it’s right to see it that way, but that may be what they are thinking.”
I genuinely believed that Mary and Steven loved and wanted to protect their son. But I also wondered if their reliance on faith and miracles enabled some level of denial about the severity of Jack’s situation. And if they did indeed see Jack’s every infection and setback as a test of faith, and we saw it as evidence of his slowly dying, whose perspective should dictate the terms of Jack’s care? Was my primary responsibility to the patient who can’t speak for himself, or to his parents, whose decision making is understandably driven by the unthinkable prospect of losing him?
“Well, screw that way of thinking. They’re not going through what Jack is going through. So it’s easy for them to sit back and say this is all a test of faith, but how is that fair to him?” Though I’d been hungry when I began my drive home from the hospital, I’d lost my appetite to the anger that overwhelmed me.
“Okay, okay, calm down now,” my mother said. “Listen, whatever God ultimately wants for this patient is going to happen. You cannot control the outcome. So you just need to do your job and not think too much about it.” I exhaled through my mouth, the hot, quick jet of breath loosening some of the emotion tightening my chest. I saw that I’d been gripping the steering wheel so tightly that my hands hurt.
* * *
The next morning, Mary, Steven, Dr. Nguyen, and I sat together in a small meeting room with faded blue walls and a gray conference table. Dr. Nguyen introduced herself, pressing both of her hands gently around Mary’s right hand. Steven, a stoic man who wore a San Francisco Giants hat, had been living with a rare neurologic disease and moved around in a motorized wheelchair that he was still able to maneuver with his hands. “I never believe everything doctors say,” he told me right before I opened the meeting. “It’s not disrespect, but I was told by my doctors five years ago that I would live for only six months and I should go on hospice. But I’m still here, by God’s grace, and doing just fine.”
“That is wonderful to hear,” I said, “and you’re right—sometimes we don’t know exactly what will happen to all of our patients.” His words and tone suggested that he knew what our meeting was about, that he’d had this conversation before. I swallowed nervously.
“The doctors taking care of Jack asked Dr. Nguyen and me to talk with you about his condition and to think about how we might take care of him if he were to get really sick,” I began, trying, as always, to channel Dr. Nguyen’s natural ease. “What have they shared with you so far about the reasons he got so sick?”
“He has another pneumonia, and they said that he is getting better now with the antibiotics,” Mary began. “But they haven’t said anything about what to do if he got sick again. I hope he doesn’t. Wouldn’t we just bring him to the hospital and you would give him treatment?”
“You are right that his pneumonia seems to be responding to the antibiotics,” I said, nodding. “But since he has had many, many infections, the bacteria that cause the infections are now resisting the effects of the antibiotics, meaning that there is only one antibiotic that can treat his pneumonia at this point.”
“But at least there is that antibiotic, correct?” Mary said, and asked whether we could continue to use that one if he got sick again.
“I hope so,” I began gently, “but we don’t know if that is likely. The more likely situation is that he will have an infection from bacteria that we cannot kill with the antibiotics we have.”
“Are there other antibiotics that you can give him?” Steven asked, his eyebrows raised with worry. I had anticipated this question and practiced my response on my way to work this morning. How could I condense the molecular mechanisms of bacterial resistance to antibiotics into plain English?
“I don’t think so,” I said, pausing for a beat before continuing. “Unfortunately, when patients get sick over and over again from infections like Jack’s, and we give them antibiotics to treat the infections, at some point the bacteria are able to evolve so that they can survive even if we give them antibiotics that used to kill the bacteria.”
“So what does that mean?” Steven asked immediately.
“Soon, Jack will probably get an infection that we will not have a medication to treat. And we should start thinking about how we should care for him when we have no more medicines to offer.” It didn’t seem to me that they had known that a great many antibiotics would no longer help Jack. I never particularly enjoyed having to break this sort of news. But what made it bearable, even oddly gratifying, was the honesty of the situation: telling people the truth about their predicament in plain language. I’d sometimes wondered if the more compassionate way to have these discussions was to soften the facts with filler, with long, meandering sentences that blended hope and reality without doing justice to either one. I was learning that honesty sometimes took the form of measured, compact, declarative sentences. I had to be Ernest Hemingway. And this sometimes felt brutal, the exact opposite of compassionate. But the honesty was the compassion.
A long pause ensued. In these silences, I searched for what I could still hear: The mechanical tick of watches. The uncomfortable shifting in seats. The tapping of a finger on a plastic hospital chair. The sighs. The quiet sniffles. The vibration or ping of a text message. The world outside moving forward, as the world in the room paused.
Steven broke the silence. “I want to tell you a story.”
I nodded, angling my body toward him.
“I was told I shouldn’t expect to be alive right now,” he began. “Doctors told me that when I got diagnosed with this disease that they don’t really understand, I was diagnosed so late that I was . . . what did they say . . . beyond all hope.” He smiled, recalling that they told him his only option was hospice.
“But I told them no. I told them I have another option and that option is my faith in Jesus Christ, my Lord and savior.” Mary’s fist had unclenched, and she looked down at the table, shredding a tissue into feathery bits. A nurse outside raised her voice. “I’m gonna need help with the IV in room four!”
“I was supposed to be dead and gone six years ago,” Steven said, turning his head to look me in the eye. “And if I am still alive despite everything those doctors told me, then my son can survive no matter what you say to us. You cannot tell me that medical science is stronger than my faith, stronger than Jesus.”
* * *
Steven’s words were familiar to me. Just then, in mid-conversation, I found myself thinking about a scene from years ago, when I was in high school and listening to the story of a different miracle.
After prayers on Sundays and Thursdays, a member of our spiritual community would occasionally share a personal story about how they came to practice their faith, or how they experienced divinity. Eva, a middle-aged Cuban woman whom I’d known since I was eleven, spoke one evening. She’d been diagnosed with colon cancer but refused surgery and chemotherapy, telling her physicians that she knew God would heal her. She described at length her physicians’ warnings and frustrations, their conviction that she must be suicidal, and their insistence that she see a psychiatrist. You are lucky that this cancer was caught early enough that it can still be cured! they’d say. Why would you refuse the tried and true therapies we are offering you to live a long life? My parents had told my brother and me this story many times already, and as Eva continued, I shifted impatiently, wishing she would jump to the conclusion of her story, which everyone in the room knew any
way.
“One night, Lord Shiva appeared in my dream,” she began, pausing as she teared up. “And He said, ‘I cancel your cancer. I cancel your cancer right now.’”
She awoke in the morning with a sharp, unrelenting pain in the side of her belly where the cancer had been found. She assumed that the cancer was growing, or that a fatal complication was brewing, and went to the emergency room. But on her CT scan, there was no sign of her cancer. Three months after her diagnosis, after she had eschewed medical treatment in favor of prayer and faith healing, it had somehow disappeared. But it did show something: the cancer was gone.
“I knew immediately that He had taken out the cancer, that the pain was all from Him removing the cancer,” Eva said, her voice trembling as though she were telling the story for the first time. “The doctors didn’t believe what I told them, but of course I knew they wouldn’t. They asked if I had a surgery somewhere, but they found no signs on my belly, no stitches, no nothing. But the proof of His miracle was on the CT scan.”
My mother, who’d by then been practicing medicine for more than twenty years, fully believed Eva’s story. She’d even pointed out other examples of mysterious healings that physicians couldn’t explain. There was an Englishwoman with a melon-size ovarian tumor who’d made it disappear simply with prayer and positive thinking. There was another member of our spiritual community who’d cured her breast cancer simply by changing her diet and meditating several hours a day. Yet when my mother told me these stories, I’d argue with her. How do you know Eva didn’t go to another hospital and have the surgery done? I asked. What if the first CT scan had been wrong and there was never any cancer to begin with? Even though she and my father extolled the virtues of medicine and hoped I’d be a doctor someday, they told my brother and me these stories for a different reason. Medicine and science, while great servants of humanity, gave us the illusion that we could fully know and control the vagaries of life. But having faith meant surrender. It meant having trust that you will be taken care of no matter what the circumstance, knowing that ultimately most of life couldn’t be understood or accepted by reading books or looking to control what was ultimately unknowable. I think my parents told us these stories over and over again because they hoped that examples of people nearly dying from ailments that God, not medicine, cured would be convincing proof of faith’s necessity. Their faith was their bedrock; they feared that, without faith, my brother and I would skid on life’s loose soils, collapsing when the earth shook.
But when I heard Eva tell her own story this time, something in me softened. Her cancer had been confirmed through a biopsy; the shadows on the CT scan hadn’t been an infection or a benign growth of cells. There had been no stitches or drains or other external evidence of a surgery. I surprised myself by believing that He had indeed canceled her cancer. I scanned her from top to bottom, from the coarse black curls cascading down her back, to her distinct collarbones and lean arms, to her straight back, which had not tired or curved in the least despite sitting cross-legged on the ground for more than an hour. The story she told wasn’t tied to my parents’ attempts to convince my brother and me of the importance of faith. Yet I turned over my parents’ words as I heard her speak, reflecting on the things I couldn’t prove or understand or explain, but somehow, at a level beyond emotion and language, felt might be true.
* * *
I returned to my conversation with Mary and Steven, echoes of Eva’s words still on my mind.
“I can understand that God plays a role in all of our lives and can be the source of tremendous miracles,” I began. “But I think we should talk about the differences I see between your situation and Jack’s situation.”
“We are all the same in the eyes of God,” Steven replied. “There are no differences between his situation and mine.”
“I understand,” I continued, intending to say more, but no more words came. The truth was that I didn’t understand. What he was saying actually didn’t apply in this situation. Yes, we were all equal in God’s eyes, but we did not all suffer equally from diseases. We didn’t all have the same destiny. I had not anticipated this fierce conceptual gridlock, a face-off between faith and medicine that I’d hoped to avoid. I found myself in the position of Eva’s doctors, who must have thought her deranged, insane maybe, for refusing their tested and true treatments in favor of praying to God for a miraculous cure. And yet, He canceled her cancer. I instinctively understood Steven’s insistence that God could heal what doctors could not. I was in my own gridlock, caught between having known people including Eva who lived despite all odds because of miraculous interventions, and having cared in hospitals for so many patients like Jack, who never recovered neurologically and instead suffered infection after infection until they died. Usually in the ICU. Often in the company of more plastic tubes and catheters in their veins than visitors. Usually with doctors standing around wondering why the families of these patients insisted that we force the dying body to live, only to have it respond with clearer and stronger statements that, no matter what we did, it was shutting down. I didn’t know how to bring the conversation back to Jack, since we had drifted so far from what we’d set out to discuss. But then, perhaps talking about God and medicine was the only way Mary and Steven could manage to talk about Jack.
Dr. Nguyen spoke just then, nudging away the silence with her soft voice.
“Thank you for sharing your thoughts, Steven. Jack is very lucky to have a father who has such deep faith and positivity, and cares so much for his well-being.”
Steven nodded, looking at Mary.
“I wonder if you can tell me more about how God has helped you through your own illness?” she asked.
Steven enthusiastically shared that his illness wasn’t the first time he had called on God. He had prayed every morning from the time he was five years old, not only because his mother insisted on it but because he eventually found peace and comfort from the ritual, and freedom in disclosing to God what he couldn’t share with others. He spoke to God about his ailing father and his failing grades. He prayed to survive to adulthood in a neighborhood known for break-ins and stray bullets. God led him to Mary. God enabled them to conceive Jack when Mary had been told she was infertile. When he was diagnosed with a disease that robbed him of his independence, he saw it as yet another test of faith—if he prayed earnestly, surely God would listen. “And he did,” Steven said. “I’m still here. I know God will come through for us again and heal Jack.”
“It’s interesting how God reveals His will to us,” Dr. Nguyen continued. “Sometimes He does test our faith, sometimes He presents us with challenges that He has given us the tools to overcome.”
I wondered where exactly she was taking the conversation, hanging on her every word.
“Can you tell me more about Jack and about who he was before he got sick? What did he enjoy doing?” Ah yes, I thought. I hadn’t even bothered to ask.
“He was a happy boy,” Mary began. “He never caused trouble. Let’s see . . . he liked sports, he liked playing baseball. He always helped me around the house.” She told us a story of the time Jack started cutting school to practice baseball; he’d always wanted to play professionally.
“He also had a very strong faith,” Steven added. “He went to church, he believed in God. He was a strong boy.”
“And sometimes, no matter how strong our faith is, God has a plan for us that we may not understand,” Dr. Nguyen said. “And He reveals His plan to us in different ways. He clearly responded to your prayers, Steven, and gave your body much more time and strength than the doctors thought you would have. But Jack’s situation may be different in God’s eyes, even when we pray and pray for it to be different.”
“Okay,” Steven said slowly, his rising pitch tinged with skepticism.
“Jack’s body is showing us something different than your body did, Steven,” Dr. Nguyen continued, then paused. “Despite all
of the care he has gotten from many doctors, perhaps God is showing us, through Jack’s body, that He wants Jack home sooner than you want. Sooner than we all want.”
I listened, awestruck, to the way that Dr. Nguyen spoke to Steven and Mary authentically and in a language they understood, a language she believed. She said everything I had hoped to communicate, but in a way that they could hear.
“I know my son,” Mary said, “and I know that the doctors all see his sick body, but I know he is still in there. He wants to live. Don’t forget that he is just a boy. My son.” Mary burst into tears, holding her head in her hands, sobbing.
Dr. Nguyen welcomed a spacious silence—one that held Mary’s tears and Steven’s determined stoicism. “Mary, I can see how much you are suffering. It is so hard to see your own child in and out of the hospital. Do you think that Jack may be experiencing any suffering?”
“Sometimes when I am with him, I see tears in his eyes. Then they fall on his cheeks,” she said. “Sometimes I wonder if he is in pain and can’t even tell us. I just don’t know.”
“If his brain isn’t working and he can’t even tell what is going on, then how can you even tell if he is suffering?” Steven asked Mary, his tone defensive. “Maybe the tears mean nothing.”
Steven’s desperation was palpable. He barely listened to Dr. Nguyen at times, sharing his thoughts before she finished hers. My mind is already made up about my son’s fate and there’s nothing you can say to change it. I might have stopped the meeting at this point out of anger and frustration, but also for fear of alienating Steven and Mary. Dr. Nguyen found a gentle way to keep going.
“There are different types of things that can cause pain and suffering,” Dr. Nguyen began. “Some of those things have nothing to do with the body. They could have to do with losing certain parts of ourselves when we get sick, losing the ability to do the things we love. Things like playing baseball or going to church or just being able to be a young man in the world.”