Diagnosis When All This Is History: North London, the Land, and Life with a Neurological Disorder
I have never been anything but this ragged, medicated self; I have never been less aware of the ground beneath my feet.
Slightly to the northeast of my house is the Royal Northern Garden, a memorial to the casualty hospital that once stood on the site. It was bombed, closed, and demolished, so all that remains is the foundation stone and a small plaque explaining the history. Children play there in the summer, and people who live nearby come with picnics. It’s nothing much, just a few flowerbeds and some open space, a green bite taken from a close-packed urban block. There are war memorials like this all over the city if you know where to look. Each one is a small preservation of absence, as if to say: Let this stand as-is, let it become nothing else; in this place, the world ended .
It’s one of my favorite things about this city: how its history visibly underlies its present. I am an English land lawyer, practicing in a legal tradition that has existed since the Norman Conquest, and in which space and time are irreducible from each other. But in the garden, in the sunrise, my vocation seems an impossible fact about my interior landscape. I have never been anything but this ragged, badly medicated self; I have never been less aware of the ground beneath my feet.
I get these bad headaches. People say, oh, poor you, I get migraines all the time. Want a paracetamol? You could try lying down in a dark room. Mostly I just want to die. I prowl round the house all night and go out into the dawn, feeling as translucent as the frost.
It’s called cluster headache: an innocuous name for something that has been described as “ the worst pain known to humans .” It’s an incredibly rare neurological disorder characterized by weeks-long episodes, recurring every year or couple of years. During a cluster, the headaches come two or three times a day, so regularly you can set your watch by them. That’s one of the two key diagnostic features. The other is the quality of the pain. Describe it , they say. Is it stabbing or a dull ache? Put it on a scale where 1 is “mild discomfort.”
I couldn’t. You can’t. I bang my head against the wall and shriek and cry. I tell my partner to buy white paint. He’ll need it, I explain, cackling like a demented hyena, to paint over the spattered mess of my frontal lobes.
There are very few effective treatments for the condition, and those that do exist are often experimental and high-risk. Cluster headache itself cannot kill you. But its original name, from when it was first documented in the 1920s, is “suicide headache”—and it’s thought that the suicide rate among people who suffer from it is about twenty times that of the general population.
After two weeks in cluster, I have been vitrified, eviscerated of self. I try to work and can’t and feel the loss of it as an awful, terrifying rootlessness. When I go out, it’s in search of the real.
I’ve spent most of my working life in the historic City of London. To the north side of it is Lincoln’s Inn Fields, one of the many green spaces in this area, and at its southeast corner is the Victorian redbrick edifice that was the first home for Her Majesty’s Land Registry. The system of Torrens title, by which all land in England and Wales is documented and registered, was originally administered from here.
Land Registry is definitive, reality is frequently inaccurate, goes the joke—but the Land Registration Acts are among the great unsung artifacts of the modern world. Once registered under the new system, land is easy to describe and comprehend. The Land Register is electronic, open-access, accurate and elegant. No need for the old things: the centuries-old deeds; the epitomes and abstracts of title; the heavy fading indentures; the wax and metal seals. With the coming of compulsory first registration, sic transit gloria mundi . In a historical irony, Land Registry registered their own premises and have since been evicted from them, moved to Croydon in a cost-cutting measure.
But their name is still chiseled over the door, and I still love Lincoln’s Inn Fields. In the summer it’s full of tennis players and sunbathing lawyers, and even now in the murky grey weather it’s not deserted. I eavesdrop on a pair of judges, making slow ambulatory circuits, discussing a reference to the European Court of Justice. The fresh air pierces my postdrome. I still can’t think, but it helps to be somewhere.
Rivers, railways, roads, said the lawyer who trained me, teaching me how to recognize the same land in plans drawn up centuries apart. Find them and follow them through time.
This is the end of April, week five of the cluster. (The disorder has its own grotesque and repetitive lexis. Cluster headache is the condition. A cluster is the episodic bout, the weeks or months during which it strikes several times a day. A cluster attack is each individual apocalyptic headache, and a cluster head is a person who suffers it.) A friend who’s worried about me has taken me out to lunch, to a hipster Hackney café nestled in railway bridge arches. She’s picked it because she knows the rattle of the trains—every ten minutes in each direction, regular as a heartbeat—will settle me a little.
I understand and appreciate her kindness, but from a great and impossible distance. I want to talk about the unbearable noise and the crush of people and how much I hate this city and how I’ll never be able to do anything again. I can’t bring the words together. My friend puts a hand on my shoulder and says gentle things about self-care, patience, and time.
Afterwards we wander London Fields in the miasmatic halfway-springtime, watching the birds gather and the dog walkers throwing sticks. The trains rumble on, following the curve of the route to the east. Rivers, railways, roads , I think again, and recall the conclusion to the lesson. Look for them, but don’t rely on them. A river can be dammed. A road can be diverted. A landscape can be divested of everything human. Like I have been.
We watch the birds.
On a day on which I’ve had two cluster attacks rather than three, I feel like I could manage climbing Hampstead Heath. Another friend and I get together, fill thermos flasks with tea and set out along the route we always take, up past the Mixed Ponds. I’m still in postdrome and complaining about my ineffective medication, but it’s okay. It’s the hour before sunrise and the twilight is sweeping across the heath. We scramble up to the top and look out over the familiar, breathtaking view, the city skyline spilling silver over the horizon.
It’s while we’re standing there, quietened by the beauty of it all, that a tourist brushes past, waving a map. She crumples it away, says to her companion, “Should we go to Hampstead Heath? Where is it?”—and my friend and I clutch at each other and laugh hysterically.
“Do you think we should tell them?” my friend finally chokes out, and we think we should, but in the meantime they’ve vanished from sight and we just go on laughing. We amble back down the hill and I can tell we’re both thinking obnoxious Londoner thoughts. Imagine not living here. Imagine not knowing this place, its grass and water, land and sky, as well as you know yourself.
Not long after that, I wake up on a late May morning feeling like glass, as always. I lay my feet down as softly as a cat on bubble wrap, to avoid any jerk of the head. I make coffee and yawn and check my work email and it takes me two hours to realize that I’ve had the cluster attack in my sleep. That it has left me with the constrained gait and the crystalline postdrome, but it didn’t wake me. That I was razed by pain but the bedrock remains, and it’s going to be over soon.
Back a bit, about seven years or so. The version of me who exists in this moment had her first cluster headache not long ago; she still has most of a decade of misdiagnosis to live through. They’ll tell her it’s sinusitis, migraines, tension headache. It isn’t any of these things. (Neither is it the end of the world, but she doesn’t know that yet.)
In this moment, I am sitting at my desk late in the evening, trying to get this finished though I’ve been working on it for days now. I’ve tipped out so many old deeds from ancient envelopes that I can’t get my fingernails clean, and when I brush my teeth at night I cough up four-hundred-year-old dirt. A colleague, the kindly middle-aged lawyer guiding me to qualification, is watching me sift through a pile of ancient conveyances, looking for the root. It’s a first registration; after I’ve done this epitome and abstract, the deeds will be of mere historic interest.
“Remember that you were taught how to do this,” my colleague says, quietly. “One day, you’ll be among the last who can.”
I’m struck by how she says it, with diffidence, and certainty. One day, when all this is history. But visible, documented; part of us, and part of the land.