I. Medical humanities as networks, systems and translations


A woman with a debilitating disease finds hope in a man wlw’s come from a war-ravaged country.

He lifted his glasses and let them rest on his forehead before taking hold of my right leg. “Pull me closer,” he said.

1 pulled.

“Push me away.”

I pushed.

I thought: This is the game lovers play. Pull me closer, push me away, each action holding the promise of a specific outcome: If 1 push you away, you will come after me. It 1 pull you closer, you will let me in. But he wasn’t my lover. He was my doctor.

And then 1 felt my leg give way, a sensation of water running downhill. I came back to myself. To the blue-white light ot the exam room. The crinkly sound of the paper on the table. The feeling of his hand on my skin as again he told me to pull him closer. To push him away. The sensation ot weakness once more, this time in my left leg.

He made no comment, but I saw the studied flatness ot his expression. I looked down at the shrunken muscles in my feet, at my paralysed toes. And then I looked up at him. He reached into his lab coat, pulled out his reflex hammer and took aim at my knee. My leg jumped, the spasm of a too-brisk response.

“You are fine,” he said, his words inflected by the Syrian accent that gave me so much comfort. “Trust me.”

I tried to trust him, but I wasn’t fine and we both knew it. My motor neurons were failing. They had been failing for two decades, slowly, in a sleepy subterranean wave.

I knew I was lucky. Motor neuron disease is incurable and most people who have it die within a year or two, maybe five. But I was still alive. Soldiering on.

So when my doctor said I was fine, he meant he had discovered nothing new and alarming during this exam. I was holding steady. I wasn’t fine but 1 wasn’t dying, either.

We met every three months. The regularity of these appointments, and the close monitoring that the schedule suggested, should have terrified me. Instead, it made me feel safe. As time passed, 1 realised it wasn’t just the monitoring that brought me comfort but the doctor himself.

I liked the way he wore his hair cut short, so I could see the contours ot his skull. 1 liked the shape of his hands and the patient way he answered my questions. And if I hesitated, not wanting to talk about embarrassing symptoms, he would soften his voice and give me a mild look. “Tell me,” he’d say, and I’d tell him.

One night I dreamed of him standing in the middle ot a wasteland, a world exploded by war, his sleeve pushed back so I could read the watch on his wrist. The dial read 10 minutes to 8. In the dream I thought, “Oh thank God. 1 still have time.” But when I woke up, I felt only terror. “Time’s running out,” I thought.

I sent my doctor an email and he responded right away. “Do not worry,” he wrote. “You are fine.” I felt the force of his words, the shelter of his certainty.

It’s axiomatic to say that patients with serious illnesses fall in love with their doctors, seeing them as points of light in an otherwise dismal sky. But I knew this wasn’t love. It was desperation, a finger-hold on a clift before the fall.

I wasn’t in love with him, but I had come to depend on him. I was accustomed to taking care ot myself and I had let him take care of me. I let him see that I was scared. And when I let him see my fear, I had to see it, too. My own fragility. The stuff I couldn’t just power through.

Despite this, he gave me hope. This was the ammunition that fuelled my fight.

“Pull me closer,” he said each time we met. “Push me away.”

I asked about his family in Syria.

“You don’t want to hear this,” he said, as formal and as courteous as ever. But eventually he told me about his reckless nephews. His brother-in-law with cancer. His mother and sisters who remained there, watching daily for things that could fall from the sky: bombs, pieces of aircraft, the flotsam ot war.

Inadvertently, I winced and turned away. When I looked at him once more, he was watching me recoil from things unknown.

“You are fine,” he said, and smiled.

Not long after, three Muslim students were shot in our town, killed when they answered a knock at their apartment door. In San Bernardino, Calif., a newly married couple, their toddler at her grandmother’s house, opened fire in a room full of county office workers. And all the news was about shooters from ISIS, Muslims and the threat they posed to the American way of life.

At my next appointment, I could tell my doctor was preoccupied.

“What’s wrong?” I asked softly.

“It is nothing,” he said. He wouldn’t look at me.

I thought about the way he had come to America and chosen to work at a big state teaching hospital so he could help poor people. How he had come here to be safe and to offer safety. I had never seen him look as defeated as he did now.

“Tell me,” I said.

He hesitated and then he said he was afraid for his wife and children. He would be fine, but he worried about them. “People are crazy,” he said. And then he began to talk about leaving America, maybe moving to Dubai.

“You will break my heart,” I said. I thought 1 was joking, but a minute later I was weeping.

I understood why he wanted to leave. But I also knew that if I was still alive, it was because of him. His bravery mattered when mine faltered. His mantra, “You are fine. You are fine,” cut through my doubt when it seemed there was no light.

How many effects of warfare are invisible, revealed only in human trembling, that shivering language of fear? The twitching, failing muscle. The bullet in the air. Each equivalent to the other, it turns out, when the coming damage is unknown, but certain.

I wanted him to be safe. The same thing he wanted tor me. And I knew I was helpless to procure that safety for him, because some people are, indeed, crazy. And he was just as helpless when it came to halting the march of my illness.

I said his name and he turned to face me.

“I am with you,” he said, as if I had asked him tor something, his voice fierce again. His face filled with resolve. “I am not going anywhere.”

“You’re O.K. too,” 1 replied, wiping my eyes, knowing my words were futile but needing to say something anyway. “Nothing’s going to happen,” 1 said, even though 1 could not possibly know it he would be all right. Even so, 1 barrelled on. “Your family will be all right. You’ll be all right.”

He smiled gently and shook his head. And then 1 realised something: He had never once tried to reassure me about the future in that way, with false hope. He had only ever spoken about the present, telling me what he knew to be true. I was still fine. 1 was not yet headed for a quick death. And that was what had given me comfort.

“You are fine,” I offered softly, thinking that, tor at least this moment, he was. But as soon as I said this, he flicked his glance away and did not reply.

I did not blame him for ducking the conversation the way you would dodge a downpour of rain. We could hear nothing of war in that cool place, where the only sounds came from the elevators rising and falling. There were no bullets flying. No audible dying off of this neuron or the next. These things are silent until they are upon us, and by then it is too late.

So we sat without speaking, together in the dark night of that bright room. But if he had taught me anything, it was that comfort resides in the rituals of care, the steady application of optimism, the shivering light of faith in the fact that I was still okay.

And so 1 thought: What can 1 offer when the only thing 1 have is hope? And then: You can be his patient. You can let him take care of you.

Almost as soon as I thought this, he reached into his lab coat tor his hammer. “Go like this,” he said, cupping his fingers so that one hand hooked into the other. When 1 did, he told me to pull. Then he hit my knee with the hammer and resumed his exam.

Reprinted with permission of The New York Times. First published 14 April 2017 in the series ‘Modern Love.’

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