Halldora was far from Thorlak’s only success story. And, reading through some of his other notable victories, as described in “The Saga of Bishop Thorlak,” it’s hard to be inspired by the overall quality of the contemporary reporting. Women were cured of devilry by drinking oil Thorlak had consecrated. A small cow that fell from a cliff and was “completely smashed up” was reassembled instantly by his intervention. He calmed seas and extinguished blazes. A number of people walked again following his involvement. Is Halldora’s narrative reliable enough, or even detailed enough, to suggest MS had appeared in the twelfth century?
Saint Lidwina of Schiedam’s narrative benefits from better documentation. A Dutch mystic living in the late fourteenth and early fifteenth centuries, Lidwina led a healthy life until she broke a rib in a fall while ice skating at the age of sixteen. An abscess formed, slowing her recovery, and she continued to have difficulty walking long after her injury had healed.
Over the next few years, she developed headaches and shooting pains in her teeth. By nineteen, she had sporadic pain throughout her whole body. She was still unable to walk without assistance, had weakness in her right arm and was also blind in her right eye. Later in life, she saw angels and spoke with God. These instances were sometimes accompanied by periods in which the severity of her ailments was reduced.
Lidwina is still not a natural fit for an MS patient. Descriptions of her illness include some strange details. Blood poured from her mouth, ears, and nose. She shed skin, bones, and parts of her intestines. Her bodily odor was sweet smelling and sometimes cured the sick.
Still, in among the offal and the holy miracles, there is something that definitely sounds a little like MS here: a disease of blindness and paralysis and pain, with a form that means the worst of it comes and goes. I can easily imagine Lidwina, fearful of what was happening to her, and, like all patients in all eras, casting around for the answer that most lined up with the thinking of the time.
Regardless, for the first verifiable case of MS you have to look to the nineteenth century.
In December 1822, Augustus d’Este, a grandson of George III, traveled from Ramsgate to the Highlands to visit a close friend and discovered, upon arriving, that his friend had died. “There being so many persons present I struggled violently not to weep,” he wrote after the funeral, noting endearingly that his struggles were unsuccessful.
In the days that followed all this weeping, the world was changed—viewed as if through tears. But d’Este was no longer weeping. He noted in his diary that his eyes were “attacked,” and he was relieved when the situation resolved itself as quickly as it had appeared. He may have thought, at the time, that this would be the end of it. But in truth it was the beginning of it.
Reading back over the records d’Este kept throughout his life—he was twenty-eight at the time of his first symptoms, and he died in 1848 at the age of fifty-four—he was an exemplary patient, endlessly optimistic, and keenly alert to any change in his physical being.
Still, it is a spooky experience to read through a litany of familiar symptoms, understanding that this is the first time they had been recorded in such detail. In 1825, Augustus has spots in front of his eyes. In 1826 his blurred vision returns, while diplopia, or double vision, follows a year later during a scorching trip to Lausanne. This time, it is accompanied by “a torpor or indistinctness of feeling about the Temple of my left eye.” A torpor or indistinctness of feeling. At times, it feels like MS is getting its first poet as well as its first patient.
And it continues. His strength leaves him for a period of a few days. He suffers numbness and a loss of sensation. He collapses. He has fatigue and impotence. His bowels are good and then his bowels are very bad: “a most unsatisfactory state.” He has balance problems and spasms—particularly in the morning upon waking.
Throughout all of this, a secondary narrative slowly emerges, as he is subjected to strange contemporary treatments by a shuffled array of doctors. He is blooded by leeches. He is made to drink and bathe in “Steel-water.” Another doctor prescribes beefsteaks, twice a day, as well as London porter, sherry, and Madeira. (In ancient Egypt the doctors were priests; by the nineteenth century in Europe, they are often chefs.) D’Este’s legs are rubbed with brushes and his back is rubbed with liniment. He slaps himself in the groin to bring his strength back temporarily. He undergoes, in his later years, a “course of Electricity.”
And this is all from the doctors who try to help him. Another says that there is nothing wrong with him. This doctor says that he has seen worse.
Throughout all this, d’Este’s behavior is glorious. He seems cheerful until the end, despite his increasing reliance upon “a chair with wheels.” His notes capture not only the symptoms of his illness, but many incidental details that provide crucial context—the heat of Lausanne, for example, where he first encountered diplopia.
And this is perhaps the thing I find most noble about d’Este: he never stops trying to put his experience into words, even when there are no words available anymore, and even when, unable to write legibly, someone else has to make notes on his behalf.
We should remember Augustus d’Este for his passions, for the things that clearly moved him: for enlightenment, for his support of aboriginal peoples, for his belief that Native Americans should have titles to their lands.
Instead, history remembers him for his illness and the great delicacy with which he drew out its various elements. “I know not how to give an idea of it,” he writes one day toward the end. And this remains a central problem of neurology—at least from a patient’s perspective.
5.
The Dead Teach the Living
I FOLLOW A PATHOLOGIST ON INSTAGRAM. She is from New Jersey, and covered in tattoos. Roses cluster around her neck; vines and butterflies wind through radioactive clouds as they race across her shoulders. Her name is Mrs. Angemi, and her motto is mortui vivos docent: the dead teach the living.
Mrs. Angemi’s feed is an explosion of human suffering. Flesh is stripped from hands and arms (they call it de-gloving). Gunshot wounds knock ragged holes in skulls. Cancer spins crazed shapes out of a glossy red colon, out of a blackened lung.
And interspersed with these images are pictures of her children on day trips, or plugs for her T-shirts, including one in which the dura mater (literally “tough mother”; a protective layer that lies just under the skull) is peeled back to expose the brain.
Strange things happen when Mrs. Angemi gets mixed in with the rest of my Instagram feed. It’s meatballs and chopped daikon and then, “This is what a leg amputation looks like!” Velázquez at the Prado, take-out coffee from Mexico, followed by a scrubbed hand delicately holding the tiny brain of a fetus, smooth and cream-colored like a seared scallop.
Mrs. Angemi’s mission seems beautiful to me. She wants to share the truth about the human body, to offer bright views of our hidden worlds—and she wants to do this on Instagram of all places. She shoves death in the midst of life—in the midst of this artifice of life. She trusts death to earn its place as one spectacle among others.
I tried to explain the appeal of this to my dad once, and he raised an eyebrow and said nothing, reacting in the same way he had, many years ago, when Ben announced that he wanted to paint his bedroom black, even though it was also my bedroom. (Ben was argued down to a deep Rothko red, which was actually even more oppressive.)
“Is this an MS thing?” Dad asked eventually.
“It’s not,” I said. “At least, I don’t think it is.”
Mrs. Angemi doesn’t do MS. I suspect that the disease is simply not dramatic enough. The plaques or scars that MS leaves in the brain will not make a good enough picture without the stage management of an MRI, and there are other feeds for MRIs on Instagram. Still, I think about her work every day. I think about the story that plays out in her photographs, regardless of disease or injury. Stitching, bruising, the inevitable ravages. This is not always death. This is often just what being alive lo
oks like.
And Dad was wrong, even if, looking back, I realize he didn’t actually put his judgment into words. Seeing this endless stream of images is not maudlin. It fills me with a dizzying rush of life. I open the browser, draw a deep breath, prepare myself for the worst, and then I load up Mrs. Angemi’s page and study what she has posted that day. I look for about five seconds. And then I breathe out, close my eyes and feel incredibly aware of my own existence, of the absolute limits of my own body. I feel my heart beating. I feel my hands tingling and sparking. I feel a roaring in my ears that seems to be life itself pushing onwards one moment at a time. It is an amazing thing: the high-altitude giddiness of having survived an encounter with something so vivid. Proof of life.
I felt this same thrill—this same woozying throb of freshly achieved clarity—in the days just after my diagnosis. Sure, I experienced an enormous upsurge of smugness, a sense of being granted privileged information of some kind, information that I should not share with others even if I could. But I also felt more worthwhile things. Again and again I came back to that thought: the dead teach the living. I compared the head rush of that Instagram feed with the head rush of diagnosis, and I wondered if, maybe, we are most alive in the presence of illness.
And then one day this thought led me back to Gene.
My mother, who believes in ghosts, who believes in God, has received only one message from the other side. It was the early 1990s, and it was a message from someone she knew, her own recently dead mother, who had been a bland kind of tyrant, dour and cold as a frozen outdoor tap. Her mother had left her much, if you were counting a fondness for robins and a thick layer of emotional scarring. In the material realm, she’d also left her a book of English poems, the spine frayed and the cloth cover made waxy through handling. One day my mother opened this book to discover that her mother had marked poems for her to read—poems picked out with precise slashes of a sharp pencil. This one. This one.
This one:
Remember me when I am gone away,
Gone far away into the silent land…
As if she would be allowed to forget. What these messages said, once decoded—and it was not a tough one to crack—was: Me. It is all still about me—or at least it should be, if you are doing it right.
Gene also returned to me through a book, but the message was, typically, far gentler. One night in early January I found myself lingering in the bath with a novel I had not read in years: 3001: The Final Odyssey, by Arthur C. Clarke. The story begins with a dead man returning after many centuries away. Frank Poole of 2001, knocked into space by HAL, orbiting through the ice in the lonely darkness beyond Jupiter, is caught and defrosted in the distant future. Somewhere in the early chapters I decided to break off, marking my page with a postcard, and check the endpapers, where I had once taken to writing the date a book was first read. (It costs nothing to write the date in the front pages of a book the first time you read it, and yet it is a sweet gift, a priceless jolt of reverie when, years later, you open the cover and think: Oh, yes.)
2000. A giddy, yearlong spell at Sussex University. The MA I got at the end of it mentioned literature and visual culture, but Sussex had been so bracingly interdisciplinary I had quickly lost my way and ended up spending most of the course reading about postmodern anthropology. This is even stupider than it sounds, really: it means I was excited about understanding the social structures of people who cannot agree about reality in the first place. “Nice work,” Mum had said to me when I told her what I had been up to. “That will come in useful when you’re looking for a job.” But it did, I guess: I now write about video games.
And the course was only half the fun anyway. Brighton! I experienced a sudden shock of brisk imagery: riding the Falmer train on a sharp-aired Thursday morning, heading over the viaduct with its golden glimpse of a cold, sunlit avenue leading to the distant sea; walking head down across Library Square as the first huge wet fragments of snow started to fall in December; waking in one of those sagging chairs by the photocopy center to hear the last call that the building was being locked for the evening. At any one of those points I could imagine the book in my bag or tucked under an arm, cover jacket removed so people might assume it was Derrida or The Mass Ornament.
And then I looked at the postcard I was using as a bookmark.
The postcard was clearly an artifact, edges thick and fuzzy with time, the white of its message face turning a sour yellow. And that handwriting. I felt almost dizzy as the words came into focus. I flipped the card over: Boston, the English one. And on the back. “I’m in Boston, the English one, seeing a bit of the world…” I looked at the addressee: “Chris Donlan, Sussex University. History Dept (?).” Good guess, but wrong. And with it a memory of reaching into my cubbyhole in the common room one day, expecting unwelcome essay feedback and finding: this. A postcard trailing a warm sense of the man who wrote it. That shrewd, slightly hamsterish face, that warm, edgeless voice. Gene had returned to me, like Frank Poole. Just as vivid, just as unexpected, just as welcome. And from, it seemed, a similar distance.
Can you speak to the dead? The truth, I think, is that it is easy to speak at them. It is harder to divine any kind of reply. And yet that is what I tried that January, so soon after my diagnosis. I did not always speak to the living at this time. I did not talk to Ben much about the common ground between us, in part because it did not feel like common ground anymore. Our illnesses, his mortal but curable, mine incurable but a little more wayward in its progression, did not seem to be the same shape at all.
The person I wanted to talk to was Gene, however, and the problem was simple: Gene had died. Somehow, he had been dead for ten years. He was a dear friend, so he still lived on somewhat in the world around me, a tap on the shoulder when I saw something that reminded me of him or that I knew we had spoken about. But those taps had grown less frequent over time, and I would address him in my head less and less. There was less to tell him about.
Suddenly, though, I knew that I needed him. Selfishly, I felt that he had experience that I could learn from. He had made it deep into the territory where I now found myself. Before he had died, he had also been an incurable.
And so: “Should I maybe take a trip?” I asked. “With Leon. See a bit of the world together?” Suddenly nervous: “You know. Just the two of us?”
I was bathing Leon, a dark January evening with Sarah leaning in the doorway trying to put work out of her head. She had a glass of water in her hand, which she had brought me to take my pill with. Now that I had, and now that swift flames were racing across my shoulders and over my scalp, she was absentmindedly sipping from the water herself, swilling it around her mouth like a wine-taster.
“Where would you go?” she asked. I almost replied, “Boston, the English one.” Instead, I said, “I was thinking about seeing Gene.” A pause. I realized that what I had said was not quite correct.
“Gene?” Sarah reached for the name. “Isn’t he dead?”
“I certainly hope so, darling,” I replied, teasing Leon’s wet hair into short blonde spikes. “We cremated him.”
Leon slapped my hand away and flattened her hair. Sarah gave me the weary look she had started to give me over the last few weeks. It was the look that said that she, at least, had noticed that I was approaching euphoria, and maybe it would be nice for us both to notice this together.
I explained that I had meant to say that I was thinking of seeing Brian, a friend of both Gene and mine from my first spell at university, spent further along the south coast. Another seaside town: Bournemouth. Brian had stayed put after the rest of us had left, and, earnest, generous, funny, and sad, he was someone I didn’t get to see enough.
“It would be good for us!” I said. “Well, it would be good for me. I could take a day off work. Nobody will miss me. I haven’t taken Leon anywhere by myself yet—not out and about.”
Sarah sat down on the edge of the toilet and watched me taking Leon out of the bath, wrapping her slippery
fish body in a towel and fuzzing her hair, creating reluctant giggles. “Why not?” she said at last, looking down at the glass in her hand. And then: “Did you take your pill?”
“I think so,” I replied, but already I had no idea.
Still, why not indeed? That head-rush of diagnosis was still expanding within me. It had lasted for a good few months or so, obliterating Christmas and rolling into January, making me feel like I was flying, arms outstretched, borne aloft by sheer energy and the belief I could outpace this unknowable catastrophe that I was suddenly expected to live with. I was put in mind of that line of Fitzgerald’s—a note to himself in the unfinished manuscript of The Last Tycoon, and my favorite fragment of anything he wrote: “My blue dream of being in a basket like a kite held by a rope against the wind.” The annotation for this reads “Airplane Trip,” and maybe I felt a little of that skymindedness, a little of the giddy, improbable early days of aviation.
Why not indeed? I was on new pills that shook me roughly every morning and evening, rubbing fire into the skin around my neck and my cheeks, like a good sharp headwind. And it seemed that MS might be more or less contained by this medication, angry lymphocytes lifted out of reach, to the upper atmosphere. The pills left me high, or rather MS left me high. High on the sheer impact of sudden change.
Really, what was I now? Was I afflicted? A few twinges and pangs aside, I didn’t feel it yet. I felt like a survivor, a pioneer. An explorer. Here was a new world, a life altered, and I felt dangerously positive about my prospects. After years of caution, I was suddenly speaking too fast, too loud, at every opportunity, and people let me because I had told them all, in great detail, what was happening to me. I was the bright light of every conversation—at least I was in my own recollection afterward. Which generally doesn’t bode well.
The Inward Empire Page 13