The Inward Empire

by Christian Donlan

  At the summit, I eat a squashed sandwich and suggest that Mum might help carry my rucksack on the way home after I rescued her. And then it comes to me: we should be in a club. We’ve earned our place today. We deserve a club for this. We could call it the Explorers’ Club. We could have membership cards.

  Did I make membership cards? Back then, I seemed to make new membership cards almost every week for some venture or another, so I imagine I did. I can almost see them, little fragments of lined paper, covered with blotchy felt-pen lettering. A club of two.

  And here, I guess, is a club of more than two. Here is my new Explorers’ Club. I share things with these people, more than I would like to admit. A disease, for sure. A few symptoms, undoubtedly. And Quill, I probably share him, with enormous reluctance. And Dr. Koenig. And so much more I have not got the energy to list.

  I find I am now starting to look at my disease as it is in the world—and that means, shamefully late, looking to other people who have it. New symptoms real and imagined no longer lead me to neurology books but to blogs by fellow patients where I read of the fog that descends unexpectedly, of proprioception problems, of symptoms scattered wherever nerves travel—and nerves must travel everywhere. People often talk of feeling moths on their skin as their eyelids spasm. I have felt these moths. One man can sense his hands but not his arms, so his hands hang in empty space by his side. Some people, far younger than me, developed progressive MS in their late teens and have been bedbound for years—a shutter descends, but a vivid life remains. It is astonishing to see the extremes of illness MS can inflict, and astonishing to see how people make a life with the worst of it—and not just make a life, but reach out to help newcomers like me.

  And it is a reminder. At the start of this, I told myself, even if I would not admit it to others, that I felt like the right person for the job. I felt that if MS was going to happen to anyone, it might as well happen to me—who finds the brain interesting, who is endlessly eager to philosophize about identity, who is fascinated by disease and the human body and who, perhaps, has a difficult relationship with reality at the best of times.

  But I now see that I was also well suited for this in another way: I could deal with it. Not emotionally, perhaps. But I could deal with it in terms of infrastructure, in terms of the framework of privilege that I can now, through my disease, see the contours of very clearly. I have a comfortable existence, as they might have said in the nineteenth century. I was able to buy a house, able to call on nearby family to help look after my child when needed. I have a job that supports me in my illness. I have Sarah. I have Leon. I exist in a time when there are treatments for the disease that I have. And I exist in a country where there’s an NHS, which means I can rely on the kind of expertise I would never be able to afford in another country (like, say, the United States). At the start of this, I did not question that my neurologists were brilliant people with brilliant training. I assumed it, and I was right to assume it. I did not question how many astonishing people were suddenly on my side.

  Another trick, then. Another revelation. MS made visible the nerves beneath the surface of the skin, informed me of the electrical world that makes thought and movement possible. But it also made visible the accident of good fortune. Is it unfair to get MS? Not really. Somebody has to get it. The rarefied situation of comfort from which I get to experience my steady decline, however? That is probably unfair.

  And there is one last thing MS has made visible: it has made visible what is at stake. On the bus into town a weekend or so back, Leon suddenly looked at Sarah and said: “I’m not going to die.”

  Sarah and I glanced at each other as we tried to make sense of this. A few stops back, Leon had been telling us she wanted a pink streak in her hair. “You’re not going to dye?” Sarah asked. “You’re not going to dye your hair?”

  “No.” Leon frowned. “I’m not going to die myself. I’m not going to die.”

  I had been here before, in this sort of conversation, years back at university with a nervous friend who would get panic attacks before lectures when he suddenly realized that he was going to die—not now, but one day, eventually, and this knowledge rendered the moment he was in completely unlivable. I was nineteen probably, and a fool. My response was to lie to him. “I wouldn’t worry,” I would say. “By the time we get old they will have cured it.” I meant dying.

  But here on the bus I could not lie. It would set us off on the wrong footing forever. I was pondering how to tell the truth, when Sarah did it for us. The nurse in her. Or rather the part of her that made her perfectly suited to being a nurse in the first place.

  “Everybody dies, Leon,” said Sarah, putting a hand on Leon’s tiny shoulder. “Everybody dies, just like everybody is born. It is something we all have to do one day, a long way off. And that is all right. And we are all here to talk about it whenever you want to.”

  There is something in this that gets to the heart of a worry I have: a worry about where I will be in the future, and what kind of parent I will be able to be in the future. And in this moment I look at Sarah, at how beautifully she is navigating this crucial instance, hugging Leon and meeting her frowning gaze, and I think: I am here now, Leon. At least I am here now. And I am learning what it actually means to be here for you.

  A week or so ago, I got an Instagram notification: a new account had started following me. Batting aside Mrs. Angemi, I stared at the face on the profile of this new account and saw that it was the face of my own brother, Ben. And here he is, spread over a handful of snaps: his life in Worcester, and his daughters. Guitar lessons, after-school clubs, homework, and Sunday lunches: a life that I feel I understand, even if it is nothing like ours.

  In truth, I have always been slow to see things, to understand things. My own privilege. My own good fortune. I was slow to see my daughter clearly, and understand the ultimate link between us—a dreamy man unable to see he had a dreamy child. I saw this far later than Sarah did. But I see it now on a cold morning on the unfinished road outside our house.

  After I showed her the pictures of Ben and his children, Leon wanted to write her cousins a letter. As she worked on it at a plastic table set up in the living room, the letter changed.

  And so we left home one morning last week with a treasure map. A treasure map that had once been a letter. I hung back a little as she led the way, consulting the spirals and staircases drawn on the map in confident strokes of thick blue pen.

  “The map says it’s up this way,” she said as we got to the end of our driveway. She stopped again at the end of the bumpy, unfinished road. “There are going to be hills and down-hills,” she warned me, and then, very seriously, she said: “We’re going to have to walk on grass.”

  Everything we encountered that morning had been foreseen by the map she held. “We were supposed to spot that car,” she said as we inched past a red Volvo that had parked on the edge of the curb. “We were supposed to see that bird,” she said, as a crow took off for a nearby tree.

  We rounded a corner and started up a hill, past a house where a dog was slumped on some steps. Leon looked at her map once more.

  “That dog is where I expected it to be,” she said, nodding.

  She folded the map and stuck it in a pocket, and we continued up the hill.

  Acknowledgments

  This memoir began life as a book review. It probably would have stayed in that form if not for Helen Lewis and Xan Rice at the New Statesman. Many thanks for their intervention, and for the permission to use excerpts from two of my New Statesman pieces: “The Alphabet of Months” and “A Day Out to an Offshore Wind Farm on a Boat Called Defiance”.

  My eternal thanks to Sam Copeland and all at RCW, and to Venetia Butterfield, Isabel Wall, Poppy North, and everyone at Penguin. Thanks for your patience and generosity and kindness and insight. Thanks to the wonderful Jean Garnett and everyone at Little, Brown, and to Caroline Pretty, who caught the word impedimenta before I used it incorrectly in print, but a
greed that it was a beauty anyway.

  Regarding neurological matters, thanks to Dr. Omar Hafeez-Bore, Dr. Bazo Raheem, Dr. Richard Nicholas, Dr. William Richardson, and Aleksandra Herman. Thanks to David Colhurst and the work of his students. Thanks also to Andrea Lisher, Jenna Mahoney, and everyone at the MS Society. All errors in the discussion of brain science in this book are mine and mine alone.

  Thanks and love to Simon Parkin, Will Porter, and Keith Stuart, to Matt Milne, Nathan Ditum, Pat Tod, Michael Gapper, Michael Cook, Alexis Kennedy, Brian Hampton, and Adam Shaw. Thanks to Jonathan Davis, Stuart Pearce, and Alasdair Boreham, to Charles Sabine, Jason Killingsworth, Darren Garrett, Sally Clayton, Nick Sheerin, Joe Skrebels, James Smythe, and Craig Owens. Thanks to Andy Farrant and Rachel Weber. Thanks to all at Failbetter Games and all at Ubisoft Reflections. Thanks to Ken Moffat. Thanks to Gazebo Mondrian.

  Thanks and endless admiration to the NHS. Particularly, thanks to Jonathan Knibb, Leonora Fisniku, Nadia Abdo, and Anna, Kate, and Giles. Thanks to Jocelyn. Thanks to Waqar Rashid. Thanks to the locum who was certain I had Guillain–Barré syndrome and the registrar who explained very recently that the brisk swooshing noises I sometimes hear in my head might be the sounds of blood flow that we learn to ignore in early childhood, returning suddenly through the intervention of MS.

  Thanks to Martin, Oli, Wes, Rupert, Ellie, John, various Chrises, Tom, Bertie, James G., Matt, Aoife, Johnny, Ian, Rich, and everyone at the Gamer Network.

  Thanks to my glorious and enormous family, in particular my sister Janey. Thanks to Barbara and Gerald Halsey.

  Thanks and limitless love to Sarah Lea and Leontine Maple. There are no words for this feeling, and there never were.

  About the Author

  Christian Donlan is an award-winning journalist whose work has appeared in the New Statesman, Edge, and Vice, among other publications. He was born in the United States but now lives in Brighton, England, with his family.

  Notes on Sources

  Since my first consultation with Dr. Quill I have been fascinated by the ways that we explore the brain. For the medical profession, there are high-tech options like MRIs and SPECT scans, but to my surprise the low-tech solutions are equally common. I have yet to meet a neurologist who did not want me to close my eyes and reach out with both hands, for example, or who was not interested in timing me as I walked the length of a corridor outside their office.

  For the rest of us, books remain the best way in. I have read many books on the brain over the last three or four years, but the book that has had the greatest impact on my thinking is undoubtedly Mind Wide Open: Why You Are What You Think, by Steven Johnson (London: Penguin Books, 2004), which I read long before I was diagnosed with MS, back in my early twenties. It was Johnson who first introduced me to Paul MacLean’s triune brain theory, and my conception of the brain as a mixologist, skimming me cocktails of neurotransmitters and hormones, always with my well-being in mind, but not always with my consent, is heavily based on my (mis)reading of Johnson’s work.

  Once I was diagnosed with MS, I was filled with a great curiosity about the brain and the people who had helped bring it into the light over the years. In this regard, I was delighted to find Minds Behind the Brain: A History of the Pioneers and Their Discoveries, by Stanley Finger (Oxford: Oxford University Press, 2000): a history of neurology that is firmly focused on the people making the discoveries. Finger’s book has been a good friend to me as my illness has progressed, and it remains the primary source for much of my understanding of the history of neurology.

  Finger’s chapter on Jean-Martin Charcot provided me with my first real introduction to this confusing and contradictory figure, but I have also been influenced by a few other texts. Charcot: Constructing Neurology, by Christopher G. Goetz, Michel Bonduelle, and Toby Gelfand (Oxford: Oxford University Press, 1995), is a wonderful biography that attempts to put his work on MS in a much wider context, and I am also indebted to the description of Charcot’s clinical work in MS—and the work that preceded him—in Multiple Sclerosis: The History of a Disease, by T. Jock Murray (New York: Demos, 2005), another central source for this book, covering everything from potential early MS sightings to the last few centuries’ ponderings over the potential causes.

  In the following pages I have tried to make sense of the rest of my reading. Over the course of writing this book I have also been very lucky to conduct several long interviews with neurologists, exploring everything from the mechanisms behind MS symptoms to the ways that MS patients actually react to their diagnoses. I am enormously grateful for their time. All errors in the text belong to me and me alone.

  Epigraph

  1 “When a patient calls on you”: Goetz, Bonduelle, and Gelfand, Charcot, p. 135.

  1. The Inward Empire

  1 “marked enfeeblement”: Jean-Martin Charcot, quoted in Murray, Multiple Sclerosis, p. 461.

  2 “that my diagnosis didn’t have to be a total disaster…” I was almost certainly thinking of An Anthropologist on Mars, by Oliver Sacks (London: Picador, 1995), in which he writes, “Nearly all of my patients, so it seems to me, whatever their problems, reach out to life—and not only despite their conditions, but often because of them…”, p. xvi.

  The Marrow of the Skull

  1 Details of the Edwin Smith Surgical Papyrus and my understanding of Egypt’s painful early form of neurology in the Third Dynasty come from the chapter “An Ancient Egyptian Physician: The Dawn of Neurology,” in Finger, Minds Behind the Brain, pp. 7–19.

  The Man Who Couldn’t Open a Door

  1 Christine’s story is found in “The Disembodied Lady,” in Oliver Sacks, The Man Who Mistook His Wife for a Hat (London: Picador, 2007), pp. 47–58.

  “I feel my body”: Ibid., p. 55.

  Beyond Sacks’s description, my understanding of the mechanisms behind proprioception are based on my own conversations with neurologists.

  Phineas Gage, the Most Famous Neurological Patient in History

  Few neurological patients have been as widely discussed as Phineas Gage. The details in this chapter are taken from John Fleischman, Phineas Gage: A Gruesome but True Story about Brain Science (Boston: Houghton Mifflin, 2002). Tellingly, I feel I may have been drawn to this book because it is clearly aimed at a teenage audience. Regardless, Fleischman’s account of Gage’s horrific injury is extremely vivid, and he does a wonderful job of placing him within the medical context of his day. I am particularly indebted to his discussion of the argument playing out between the localizers and whole-brainers (pp. 34–42).

  The First Recorded Case of MS

  1 MS viewed as a nineteenth-century disease: Finger, Minds Behind the Brain, p. 183.

  Halldora—written as “Halla”—is briefly discussed in Murray, Multiple Sclerosis, p. 26, while “The Saga of Bishop Thorlak” can be read here: vsnrweb-publications.org.uk/Text%20Series/Thorlaks%20saga.pdf.

  2 Saint Lidwina is also covered in Murray (pp. 21–6), and her story is further discussed in Caroline Walker Bynum, Holy Feast and Holy Fast: The Religious Significance of Food to Medieval Women (Berkeley: University of California Press, 1987), pp. 124–9.

  3 Augustus d’Este is widely covered in MS literature, but I actually discovered him by accident several years ago as he was briefly a patient of Sake Dean Mohamed (1759–1851), also known as Dr. Brighton. Mohamed is a local hero in Brighton. Born in East India, he traveled to the United Kingdom after serving in the army as a trainee surgeon. Besides tending to the sick, he also introduced shampoo to Europe, and opened the first Indian restaurant in England in 1810. D’Este is written about at length in Murray, Multiple Sclerosis, pp. 32–41, but it is best to encounter him through his own words. His remarkable diary can be read at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1998243/.

  5. The Dead Teach the Living

  1 “Remember me when I am gone away”: Christina Rossetti, “Remember,” in The Oxford Book of English Verse, 1250–1918, ed. Sir Arthur Quiller-Couch (London: Clarendon P
ress, 1939), p. 967.

  “I Only Observe, Nothing More”

  1 On the history of the Salpêtrière hospital: Finger, Minds Behind the Brain, p. 179; Goetz, Bonduelle, and Gelfand, Charcot, p. 64.

  2 Picturing Charcot at work: Goetz, Bonduelle, and Gelfand, Charcot, pp. 137–9; Murray, Multiple Sclerosis, p. 126.

  Charcot’s lectures, held on Tuesdays and Fridays, are the stuff of neurological legend. For a vivid, if unreliable, description of their strange atmosphere, see Axel Muthe, The Story of San Michele (London: John Murray, 2004), p. 203.

  3 “above average in his knowledge”: Goetz, Bonduelle, and Gelfand, Charcot, p. 16.

  “visuel”: Sigmund Freud, Sigmund Freud, Volume III: Early Psychoanalytic Publications (London: Vintage, 2001), p. 12.

  “He was not a reflective man”: Ibid.

  4 “All I am is a photographer”: Goetz, Bonduelle, and Gelfand, Charcot, p. 90.

  “I only observe, nothing more”: Ibid.

  “if you say [a doctor] is”: Finger, Minds Behind the Brain, p. 177.

  On the anatomo-clinical method: Goetz, Bonduelle, and Gelfand, Charcot, pp. 65–72.

  5 “Years of patient waiting”: Freud, Sigmund Freud Volume III, p. 14.

  “[Charcot] used to look”: Ibid., p. 12.

  6 On the doctors who spotted features of MS: Murray, Multiple Sclerosis, p. 96.

  On tremor and the separation of MS and Parkinson’s: Goetz, Bonduelle, and Gelfand, Charcot, pp. 113–20.

  7 “We are sometimes reproached”: Goetz, Bonduelle, and Gelfand, Charcot, p. 169.

  6. The Ghost on the Green

  1 My understanding of diplopia comes from discussions with neurologists.