The Inward Empire

by Christian Donlan

  “Nothing,” Brian said.

  A wound. Brian had been the busiest writer I knew back at university—and this was supremely impressive since he worked, for the first two years, on a computer-typewriter combo that stored only thirty pages of work in memory, meaning that on long projects he had to endlessly retype old sections when he wanted to rework them and reprint them.

  Even after we left university, Brian was endlessly hacking out pages. He wrote a Mills & Boon book to a formula, but abandoned the formula halfway through when he read Catch-22 for the first time and found himself transforming a tale of love in a supermarket—the title was “A Walk Down the Aisle”—into a dark screwball examination of life’s inherent absurdities. Next up, he wrote a series of detective novels based on a beloved lecturer of ours, who had always seemed needlessly hard-boiled. They were the kind of books where baddies were forever chucking the hero through plate-glass windows. I remember Brian coming up to me at the cinema one day, face glowing. A literary success: he had just conceived of a scene in which the baddies closed an open window and then chucked the hero through it.

  It felt like we could have talked here, about how our lives had changed. But why talk about it? There was coffee, and a baby rolling around and playing peekaboo like it was the newest, most exciting thing in the world. Which it was. And was she even a baby anymore? I would have to ask Sarah.

  Instead, after I’d changed Leon, I prepared everything for the journey back. I felt a slight sense of failure. I had convened a sort of seance, and yet Gene had failed to turn up. We had traded stories and the table had maybe rattled a few times, but the spare chair we had placed next to us remained empty.

  We walked out into the cold. I got ready to shoulder Leon’s buggy up the hill, and I saw Brian frozen, locked in a sudden memory in front of his car. “Gene had that thing, that little cardboard disc that allowed him to park anywhere because he was a disabled person,” he said. “Do you remember? Do you remember the way he used to set the dial on it and then Frisbee it on to the dash?”

  He laughed. “Always a little flourish with him. Always a little mockery to it.”

  Leon slept on the way back, and as she drifted off, Gene returned to me, slowly, tentatively. I willed him to me with effort. Forget the stories, I told myself. Forget the things I know he liked and the things I know he often did. Clear your mind of that and search for what you actually remember.

  And then there he was. Not the Gene of anecdote we had been pondering all afternoon—this was Gene as he was across the table from you, body sagging but mind wonderfully sharp and playful.

  What I remember of people is their hands. I hate to meet people’s eyes, so I watch the rest of them, and the hands are the true stars of the body, beautiful and expressive. Gene’s hands were particularly memorable, elegant movements, skin yellowed by disease and nicotine, fingernails wide and flat and thick, popping pills out of blister packs, scratching the back of his neck as he thought about something difficult and abstract, or crafting filterless cigarettes with the aid of a little box—both storage tin and rudimentary roll-up factory—that I remember being fascinated with.

  “Like it?” he said to me once, opening the box and showing me the mechanism.

  “I don’t get it,” I said. Inside, the box was just a flap of loose canvas and a thick metal pin. And yet when he put in paper, one edge wetted, and added tobacco, and then fired the mechanism by closing the lid, the whole thing came together and he got a cigarette out of it.

  He lit up and puffed clean white smoke. In his last years, he decided to be dapper, so he wore a shirt and tie everywhere, rumpled, of course, as if he were a private eye who had to sleep on his office sofa. This would have been toward the end, I think. Maybe a year or two left. He may have been thirty-eight.

  “My nurse likes this tin,” he said. “The two of you always want to see it. She can never get how it works either.”

  “Are you allowed to smoke in hospital?” I asked. “Aren’t there oxygen tanks around and that sort of stuff?”

  “I can’t smoke in there, but I guess I just like rolling them,” he said. He would have reached for his tea now—a half cup. He could only have half cups, and I got very good at making them, getting the milk just right. He loved tea. Loved a Coke. He loved a drink, and—yes!—he used to get very angry when he watched movies and people were offered drinks and turned them down. Renal failure meant he was always thirsty.

  I had forgotten the tea, the amused anger at the films. For weeks after he died, I kept making half cups of tea out of instinct. And I had forgotten the nurse. I don’t think he became dapper for her. I think he became dapper because here was a little, throwaway thing he could control. But I can imagine him smoothing his shirt for her, leaving his tie loosely knotted and carefully, artfully, raked to one side, as if by accident.

  In his house: New York on the wall in black and white photographs. Those pills in the kitchen. Yellow hands marked with deep purple stains. Gentle hands reaching for those pills.

  “Gene!” I said aloud in the train carriage, so loudly that I woke up Leon. Had I been asleep myself? “Hope not,” I said, out loud again, thinking of parenting. Leon yawned at me and smiled.

  Getting home felt like an achievement: a whole day trip with my daughter, and both of us making it back. But I also sensed something in Brian’s easy way with Leon, his instant camaraderie with her, which shamed me slightly. “I should have taken her out before now,” I said to Sarah as I eased Leon back into the bath that night. It seemed to be all bathing in Leon’s first few years: Leon and I, the two of us peering at each other as her toys bobbed around her in the bubbles, me kneeling by the tub the way my mum had once knelt by the tub.

  “You’ve had her by yourself, and that’s not bad,” said Sarah.

  “Yeah, but you’ve taken her all over the place, and I’ve just discovered it’s not actually that hard. I feel like I’m coming to everything too late. Like I’m a Victorian parent who’s all lofty and weird about everything.”

  Leon burped at me, and a bubble came out of her mouth. “Fruit?” she asked speculatively, thinking of dinner.

  “Not in the bath, darling,” I countered. See? A Victorian.

  Later, Leon in bed, Sarah asked me as I eased on to the sofa, “Did you get any closer to him?”

  “Gene?” I clarified. “A lot of memories. Him being funny, him being ill. I thought that would all be bound up together more. We only knew him when he was ill, but maybe we weren’t really paying attention as much as we should have.”

  “What was he like before he was ill?” Sarah asked.

  I opened my mouth and then shut it. I realized I had never really thought about this before.

  “I think he was a bit of a hero,” I finally said, frowning. “We went to his funeral, Brian and I. We met all these people who had known him his whole life, and they all wanted to know what we made of him. We were so much younger than everyone else there, so they were curious about him as we knew him—curious about his later years.”

  I thought back to Golders Green, a rainy day that ended with us lost in a park somewhere, looking for a bench that had been commemorated for Gene. It was the sort of strange adventure Gene himself would have driven us to. I think we probably got the bus.

  “I saw a picture of him when I was at the funeral,” I said. “An early picture—his twenties, probably. I didn’t recognize him. He got arthritis and then he got renal failure, one-two, falling like that. But before that, he was this rangy guy who loved cricket, who was the star bowler of his team. They told me, just before he got ill, he had this one year at cricket where he couldn’t fail. Everything he did just worked. He smashed it. He was funny and vivid, and you saw it all in that face, uncreased, unblemished. He was a rabble-rouser. He liked anarchy.

  “He seemed worldly,” I said. “And that wasn’t because he’d traveled. It was because he’d been sick. He told me this story of when he got really bad blood poisoning because of his kidneys
, and he got confused. He didn’t know what was going on, and his doctor sat down and drew these circles, and said, ‘Gene, these are clock faces. Write in the numbers.’”

  “He wrote one, two, three, and stopped. His doctor said, ‘Any more?’ So he wrote four, five, six, and stopped again. And so on and so on. All around the clock.”

  I told Sarah then. I told her that I felt Gene had something to say to me, but I couldn’t hear it.

  “Like a secret?” she asked, eyes laughing.

  “He told me a few secrets,” I said. “He told me about the nurse. He told me—he leaned forward once and whispered, ‘I never need to cut my hair. It just doesn’t grow so I leave it and always say yes when people have asked if I’ve cut it.’ And he told me about his secret plan for if he got better.”

  “What was that?” Sarah asked.

  “He was going to go to New York,” I said. “Do the whole writer thing. It would have suited him. He finished things, but he would go back and tinker. He was almost always 70 percent through a project. He said that was what being a writer was all about—the first act done, the second act done, third act tentatively in there, but having a break to think about tying it all up.”

  “How did he die?” Sarah asked, after a while.

  And I had to think about it.

  I have always known how Gene died: renal failure. But I’d forgotten the particulars. And suddenly they came back, and it was Christmas again, a cold white day in late December, and I was splayed on a sofa at a friend’s house in Camberwell. We were watching one of those cable TV history programs with terrible reenactments filmed on an impossible budget. This was the football game between the Germans and the Brits on Christmas Day in the trenches. Actors playing Germans were wobbling up out of their trench bearing a Christmas lantern that looked like it was made of old coat hangers. Our boys were lowering their prop guns and trying to work out whether this was a devious ploy or not.

  The phone rang. I was holding the phone and listening. A voice on the other end I didn’t recognize: a cockney nan, scratchy and garbled, and when the line cleared she was saying, “It’s Gene’s mum.”

  I knew then. I had been waiting for this call. Gene had gone into hospital. He’d been given a final chance at a kidney transplant. It had come together at the last moment and it was ludicrously risky. If it worked, he’d have his old life back. If it didn’t, he’d be as good as dead.

  It hadn’t worked, by the sounds of it, but Gene was still alive. He was in hospital and somehow he was doing okay.

  “I think the hospital he was in was miles away from his home—he was in Bristol, which was the hospital that had offered him the transplant. I talked to him once over those hospital phones, but he wasn’t able to focus. I tried to ring again the next day and the next day, but the phone wasn’t working anymore—it just went to busy.”

  (Admission: I was glad I couldn’t get through, as the person on the phone didn’t sound like Gene. Now I would kill for that call, on the most crackling line, with the most distracted version of Gene at the other end. “What would you say?” Sarah asked when I eventually told her this. “Nothing much,” I said. “There was nothing unsaid between us. I’d ask him about his recent winnings.”)

  Then Brian called on Boxing Day morning. Gene had died on Christmas Day. Mum started to cry and I was furious with her. For a few days I was furious at everything. I sat playing my old Game Boy Micro in the freezing garage room at Mum’s house, fuming as I lay on a tiny bed that my feet stuck out the end of.

  As I told the story I felt it all again. Memories that I had not returned to, and so they were fresh, like Ben having a seizure in his bedroom. Gene died all over again. He died every time I thought of that fucking tin of his, with the clever mechanism inside that somehow managed to roll cigarettes. And still I couldn’t see what I was looking for. Suddenly, awash in sheer frustration, I wanted to cry.

  “You looked up to him,” said Sarah. “And he knew what it meant to be an incurable.”

  I nodded and leaned into her. My head was on her shoulder, her voice coming to me from above. She started to stroke my hair.

  “But he can’t do this for you. He can’t take you through this.” She forced me to look at her. “And he shouldn’t.”

  “He shouldn’t,” I mumbled. But I agreed.

  “If he were here, what would he say to you?” Sarah asked me.

  I thought for a while.

  “He would say: ‘Remember I was more than this,’” I said. And more, I thought: he would tell me that illness is not always the end of life, and even when it is, it is not always the point of it.

  Is that why he went for that last transplant? I never really understood the last transplant, not that it was any of my business, and I still didn’t understand it now. What I did understand was that over the last few weeks I had promoted Gene’s illness to the forefront of his identity, and it didn’t really belong there. For the last few weeks I had tried to raise Gene’s ghost to talk to him about death. That’s what it was, wasn’t it? I didn’t want to ask him about life as an incurable so much as I wanted to ask him about life in the vivid presence of death. But all of my memories of him—jokes, cricket, even that white suit he never asked for—all of my memories of him lead back to life.

  “He’s a memory,” said Sarah. “He doesn’t have to be a resource.”

  “There was a weightiness to him,” I said, and in my mind I was now watching the rest of that stupid reenactment show. The Germans and the Brits playing a tentative game of football in the mud, the tempo increasing with each kick, the awareness—even on this tacky program—that this good thing that was coming together could not last. “Not to him,” I said. “To our dealings with him. An awareness that he had a far more profound sense of perspective that we found a bit awesome.” I notice now that people sometimes assume I have a wider perspective. Erroneously in my case, because my concerns have remained enduringly trivial.

  “He was forty,” I said.

  “He never had kids,” I added, although Sarah hadn’t asked, and wouldn’t have.

  Death feels so ridiculous. Every time someone I know dies, that’s what comes back to me in the shock: how ridiculous it is that we are meant to believe that someone so vividly close is suddenly out of reach for good.

  “I Only Observe, Nothing More”: Jean-Martin Charcot and the discovery of MS

  You can see it today on Google Maps, slung along the left bank of the Seine. “Pitié-Salpêtrière” reads the marker that hovers over this vision of order rendered in stone, cream-colored wings stretching away from a central dome. Somebody has helpfully added a note: “Teaching hospital with turbulent history.”

  It was a gunpowder factory, then a dumping ground for the poor and the mad. A prison for prostitutes that was notable for the number of its rats. In the 1650s, the Salpêtrière became a hospital, steadily growing in size and surviving a raid during the revolution. It was here in the 1860s that Jean-Martin Charcot, often working with his colleague Edmé Félix Alfred Vulpian, would turn the study and classification of neurological disease into a science.

  I try to picture him at work, during the morning consultations, sitting in a small office lit by a single window, the walls painted black. In this spare, slightly menacing environment, Charcot would watch his patients as they stood before him. He rarely spoke; sometimes he might tap his hand on the table as his dark eyes took everything in. In his later years, as his fame grew, he would give lectures on the diseases he was uncovering, lectures that brought in doctors visiting from as far away as Japan and the United States, as well as journalists, writers, and theatrical stars. He taught Freud for a brief but pivotal period in the 1880s and remained a huge influence on the psychoanalyst. Before all that, in the space of a few decades, he described Parkinson’s disease and motor neuron disease. And he started, in 1868, by describing multiple sclerosis, or, to use the name he gave it, la sclérose en plaques.

  Charcot was born in Paris in 1825, the eld
est son of an artisan and carriage-builder. Growing up around artists, he considered a career as a painter, but medicine offered more money, and more scope for social advancement.

  Initially an undistinguished student, by the time Charcot applied for internships he was described as being “above average in his knowledge, capacity and zeal.” Zeal may have been the crucial factor for Charcot in his early years. He was an incredibly hard worker, publishing regularly and keeping track of international developments at a time when medicine was often parochial.

  In 1861 he found an ideal laboratory: the Salpêtrière. At the time Charcot and Vulpian arrived (Charcot having previously interned there in 1852 while gathering data for his thesis on arthritis) the place was more of a small village than a hospital, home to five thousand female patients, most of them elderly, many of them muddled together under the umbrella diagnosis of epilepsy. Charcot and Vulpian immediately undertook an inventory of the people in their care, using new technologies such as photography to keep records. The initial aim was to separate the population by symptoms. Only then could they search for the underlying causes.

  Charcot called himself a visuel. “He was not a reflective man,” Freud wrote in a warm and reverent obituary. “Not a thinker: he had the nature of an artist.” Charcot said of himself: “All I am is a photographer” and “I only observe, nothing more.” He also said: “if you say [a doctor] is… a man who knows how to see, this is perhaps the greatest compliment one can make.”

  The bedrock of Charcot’s work at Salpêtrière was the anatomo-clinical method, which he adapted from an approach popularized by René-Théophile-Hyacinthe Laënnec, the French physician who invented the stethoscope. Laënnec had a two-step system: he conducted a case study of the patient while they lived, and then cut them open once they had died, in order to match the symptoms he had witnessed to the physical evidence.

  Here were two different approaches to seeing, and Charcot added a third: cellular pathology. He and his staff would observe a patient, sometimes for years, often keeping detailed diaries of the patient’s life and their symptoms that have an almost literary feel to them. And then, once the patient had died, Charcot would conduct an autopsy. The objective was grand: to disentangle distinct neurological illnesses from groups of symptoms, and then to match each symptom to a specific lesion in the brain or on the spinal cord. To do that required patience, insight, and a kind of benign predation.