So we were sitting in the living room, watching our breath mist in the evening air, and Ben was idly handling one of the many detuned guitars he seems to leave behind him wherever he goes, a jangling wake. Even without the guitar, on the rare occasions that we get together, a family of our size inevitably looks like a band posing for a photograph, albeit an odd and not enormously popular band. This particular moment would have been a liner picture from a difficult second album.
I assume time has embellished much of this, because, honestly, it’s almost a perfect memory: a dark Christmas snapshot, glittering with detail. The cold, the house dithered into shadow, lit only by glossy red candles and filled with holly my mum had diligently stolen from nearby farms, and Ben telling us about his head as he strummed softly and unmusically. The cyst was in a good spot, apparently, between the brain and the skull. Easy to access was the phrase he used, uttering the words with the slightest hint of a laugh. He told us the cyst was about the size of a fig. A pain, but nothing more. A solution would be imminent.
How did we react? We scattered our own ways without questions. Mum retreated into Radio 4. I went out to a movie. And yet, wordlessly, something had been agreed upon. There was an unspoken agreement between all of us: we were deciding not to give this information the time it needed. It was as if we had received a coded message from an interesting source, and had chosen not to decrypt it.
I assume everybody was as confused as I was, confused and somehow affronted. I was baffled that these catastrophes really happened to ordinary people, and with little sense of an appropriate thematic build-up. Our lives seemed too small-scale and domestic for anything so shamelessly dramatic to explode around us. It felt uncanny too. It was impossible to think back on a decade or more of memories and now imagine the cyst there with us, secretly pooling the whole time.
We stumbled away from that Christmas, and the planning began. Treatment. Drainage? Lots to plan for. And then things started to change. I remember us waiting. Waiting through a clear perversion of pregnancy. The cyst was a fig. Then it was an orange. Then it suddenly wasn’t a cyst anymore and someone was explaining to us—always us, I have refused to accept any solitary memories—that tumors came in four grades, and grade four was the worst. This was a two.
It was an astrocytoma, so named because it grows from cells called astrocytes that live in the brain and spinal cord, and I gather it once struck someone that these cells look like stars. (Astrocytomas are a form of neuroglia, incidentally, cells which you could think of as being the caretakers of the nervous system, quietly keeping things ticking. I only mention this because the word neuroglia has a truly wonderful translation. It means “nerve glue.”)
There was little time to think. Medical crises seem to borrow the rhythm of wartime, frantic action punctuating an endless period of waiting in which minds are left blank and useless, in which heads are ducked in readiness for the next shell that will fall. In spring, Ben had surgery in a pretty town just outside of Brighton that I have hated ever since. The surgery lasted for an afternoon and then long into the evening, and my imagination, strung out on endless comfort Dime bars, busily filled in the details for me, replacing the battered workaday blandness of hospital equipment with extravagant futuristic horrors. In the ICU I imagined Ben twisting, slowly, within a thick gel, stiff little bubbles frozen around him. In the operating theater, Mars Attacks cannons, bulbous and heavily riveted, were trained on the back of my brother’s skull. A slow, Buck Rogers execution.
Throughout all of this, though, I had a different vision of what was happening too, a competing schema that required no imaginative effort at all. The books in our house, the books Ben and I had grown up with, all of them were about islands. Treasure Island, The Coral Island, Robinson Crusoe, even Lord of the Flies, which we both would have stumbled away from in English class around thirteen or fourteen, bludgeoned by that unflinching glimpse of Piggy’s head, cracked open, with “stuff” coming out of it. Islands were a place you got stuck sometimes, a place where you awaited rescue. Inevitably, unbidden, I thought of Ben on an island, long body stark against the sky, head bowed as he kicked over stones on the shoreline. Dad once told me that the Latin for island was insula. He was talking about Don Quixote, his favorite book, in which Sancho is promised the governance of an island for his loyalty and hard work. I suddenly grasped the origin of the word insular, and thought: That’s perfect. An island is the perfect place for that special kind of loneliness, that inward journey.
Where was Mum? Rattling urgently between Kent and East Sussex in her Morris Traveller, fulfilling tiny but crucial missions that involved new books and clean clothes, all of it part of a wider campaign to remain busy and avoid thinking. It’s how I would have handled things if I’d been in that position. Dad stayed put with Ben. And when Ben was in surgery, Dad looked after me, which meant sitting next to me in a car park in Sainsbury’s while I cried. I can still remember the cool weight of his hand on my spine. I would think of it in the early days with Leon, when I would rub her back to ease her to sleep. To attain this kind of calm, Dad had become an expert. He had learned everything he could about cysts, and then he had to learn everything he could about tumors. It was a relief to me to have someone I could ask difficult questions—someone who knew me, and knew how to give me difficult answers.
My feeling back then was that Ben floated through all of this. Watching him each day in hospital in the lead-up to surgery, the reality of the situation seemed at times not to register with him. He just played cards, endless rounds of solitaire, and read thick books about Stalin.
Clearly, I completely missed the more complex emotional dimension. I missed Ben’s anger, although I have since been told that he was so furious he wouldn’t even talk to his doctors, leaving Dad to do the mediation. My brother wouldn’t really talk to Dad either. In the few days before he went into hospital, Ben communicated with Dad via notes spelled out in the magnetic letters stuck to the door of the fridge at home. Basic notes, a warning that an emotion was spiking, perhaps, or a fragment of something lurid and brittle. One afternoon he left just two words: HELP ME. There wasn’t room for much else. It was a small fridge.
I missed the fear too, and it’s this that I really regret. I regret being unable to at least try to comfort my brother, and I also regret missing the opportunity to get to know him a little better. It is one thing to say things at the same time as another person. But it is something else to be able to understand why they are saying them. Ben was the kind of older brother who never really let you see the wheels going around. He was stylish and a bit of a rake and subject to a great deal of what media professors might refer to as the female gaze. In the strange, archaic grammar school that I attended in his wake, he was a legend, albeit for reasons that nobody could entirely pin down. I was always Donlan’s brother there, although I would try to argue that I was also Donlan in my own right.
I didn’t convince anybody about that one. Even the headmaster was in on it, a lofty public-school parody who walked the corridors wearing an academic gown and carrying a cup and saucer, and who had a harpsichord and a key to the city of St. Petersburg in his office. He would squint and look faintly pained whenever my brother’s name came up. “Oh, Ben Donlan, yes,” he would say, as if being forced to recall a rare and distressingly poisonous type of frog that had once been found in his garden. “He was very ‘cool,’ wasn’t he?”
If I passed up the chance to comprehend this mysterious character a little more deeply in his suffering, I at least gained an understanding of the way that illness can change people in the most obvious ways. The day after his surgery, I went to see Ben in hospital, harboring a real uncertainty as to what I would find. What does someone look like after brain surgery? Ben looked pretty relieved, actually: laughing, perhaps a little too loudly and a little too easily, and eating a gray hospital yogurt as we gathered around his bed in the neurological ward. He had Band-Aids where the surgeon had drilled into his skull in order to fix a frame in
place, however, and he had a horseshoe scar, clean and geometrical in its arc, cut into his scalp, which had been clipped down to stubble. That curving scar seemed inappropriately beautiful: a mugging by Euclid. You don’t expect such elegance to accompany such violence. It did not even look like violence.
Most interestingly, a day after surgery Ben was still attached to something. I don’t know what it was exactly, but a tube came out of the top of him, either carrying thick brown liquid away from the scar or feeding it in. It didn’t seem right to ask which it was, and besides, I was done with finding out about the brain for the time being.
I have since read a little about brain surgery, and I’m glad that I was ignorant back then. I wonder how much Ben knew, going in.
Brain surgery: beyond the idioms, it’s alarming to discover what a physical process it often is: reinforce this, remove that, stop all these things from rupturing. Yes, it’s delicate, but largely because the brain is delicate. It’s delicate in the way potholing is delicate: you’re headed somewhere dangerous and cramped, and you don’t want to do anything awful along the way. But still, potholing is not a dainty thing.
The tumor did not return in Ben’s case, but he was changed by what had happened. He had fits due to scarring on the brain, and the drugs he needed to handle his fits created a kind of dampening effect, a very slight dulling of the wit, leading to a clumsiness in speech that I have recently come to recognize in myself too. I now know that Ben also lost the next five years, maybe more. He was convinced that he was going to die regardless of what he did.
This experience was never part of the past for Ben, but it became part of the past to me. And then, four or five years later, in my last year at university, a call in the middle of the night and it all started up again. Ben had begun to fit once more. He had lost the ability to speak. When asked, in hospital, to raise his right hand, his left leg shot out instead.
There was no regrowth of the tumor—Ben’s neurosurgeon came out of retirement to confirm it on the new scans. This was just an incident, apparently. And then, four years later, another one, and much worse.
I was out of university this time and, stuck in an aimless job that wouldn’t miss me, I went to stay with Ben and his wife while we tried to work out what kept going wrong—with the understanding that we would not be doing much of the working out. Again, Ben had lost the ability to speak. Again, his arms and legs did not respond correctly to instructions.
This time always strikes me as being the hardest time, even though, once again, the scans showed the tumor had not returned. When asked, Ben admitted that maybe he had been experimenting with not taking his medicine, but it was tricky to get a straight answer, and even trickier to understand what he said anyway.
Selfishly, it was the hardest time for me because I was ostensibly an adult now, and I should not be hidden from things anymore, even if that’s all I really wanted. That’s why Dad took me in to see Ben fitting in his bedroom, creating a memory that I still do not entirely understand the meaning of.
Meaning is loose with things like this, anyway. By the time of Ben’s second relapse, I had read various books on the brain, perhaps in an unconscious effort to reclaim the brain from the frightening muddle of Ben’s illness. It was thin protection against what was to follow, knowledge. Popular science meant I had great anecdotes and a blunt caricature of the mind, but here was the brain going wrong in front of me, contorting somebody I knew into somebody I didn’t.
Again, selfishly—and it has always been hard for me not to be selfish around disease, even if it is someone else’s—Ben’s illness became a boundary for me: an upper limit to my own fear and even my own imagination when it came to considering the worst thing that could ever happen to a person. What could be more awful than a tumor beneath the skull, than the notion that death is alive inside you, and blooming? What could be worse than a limpet, attached to your brain and exerting a wet, subterranean pressure?
It was a boundary in another way too. The day after I saw Ben fitting on the bed in that new house of his, we all went back to the hospital together. Ben’s daughter had just been born. He was the first of the Donlan children to have children of their own.
Ben was in and out of hospital a lot around the time his daughter was born, sometimes as a father, sometimes as a patient. As a father, his life was beyond me. I would not have understood what he was doing if I had taken years off to study it. As a patient, he spent a number of days in the medical assessment ward, a long, grumbling triage room where all kinds of patients flowed together, regardless of their situations.
I remember finding the doctors in this ward fascinating. The one in charge was short and puddingy and restless, racing from bed to bed with the names—or probably conditions—of each patient written on Post-it notes he had arranged on the waxy cuffs of his old black work suit. He was forever moving them around, those notes, updating them, crossing something out with a blunted felt tip. Occasionally he would pluck a note off his cuff and crumple it with a quiet kind of theater: it meant that someone had been moved upstairs. You could almost see the space in his mind being freed for the next note, the next patient. I sensed at the time he would not have crumpled a note in a case where somebody had actually died. He presumably had pockets to deal with that.
The doctor who really stood out, though, was Ben’s neurologist—the first neurologist I ever encountered. I remember thinking: You don’t look like a neurologist—and then wondering why I was so sure about that. In my mind, neurologists resembled the kind of German scientists who you’d see designing new Audis in adverts. I knew what glasses a neurologist should wear: wire arms, no frames around the lenses. This man looked like a landscape gardener, crumblingly handsome in that English way and dressed the colors of autumn in a shapeless woolen jumper and the sort of checked shirt Paddy Ashdown wore to explain to the electorate that he was posh but not frivolous.
This was the man who, behind the scenes, was organizing all the scans and tests Ben was having: an MRI, which I pondered with a kind of awe; and an “LP,” which ended up scrawled on his notes one evening, scheduled for the next morning. “Lipid profile,” I reassured everyone, with the certainty of the very stupid. “Just a blood test. Nothing to worry about.” It was a lumbar puncture, inevitably: not just a blood test, and very much something to worry about.
Why this man has stayed with me, and why I think he would have stayed with me even if my life didn’t take some of the turns it has subsequently taken, was that I got to see the way he worked. And the way he worked was entirely unexpected. He would hover by Ben, and just watch as Ben slid in and out of sleep.
It turned out that he watched Ben far more closely than the rest of us did. At one point, Dad was explaining to him that Ben had these fits, see, and the neurologist said rather mildly, “Oh, look—he’s having one now.” We all turned, and Ben was having one, rocking back and forth on his bed, mouth open. The neurologist nodded: he’d seen all he needed. The angle of Ben’s head was important, he explained. I gather that it told him where the lesions probably were. He looked at Ben’s charts, scribbled out the current medication and wrote in something else. The fits stopped after this, but a lot of our anxiety went away before we even started to understand that, somehow, he had just fixed everything.
Mine went away with, “Oh, look—he’s having one now.” To this man, Ben’s fits were not a sign of the world collapsing inwards. They were useful. They aided him in some private, professional manner.
And he did all this just by looking. The neurologist is the person who sees. I would hear echoes of this idea the deeper I got into the world of neurology. But I saw it all there, right at the start, perfectly expressed in this contained, horticultural man with his lumpy jumper. The man who sees—and more than that, the man we have implicitly trusted to have seen everything already.
This, I realized after my first jolt of Lhermitte’s in February, was who I needed. I needed a neurologist, a person who would be able to study me and loo
k beneath my surfaces: beneath the skin and bone, but also beneath the hedging, the fudging, the inevitable bargaining. This impulse sent me to my GP, located down one of Brighton’s more whimsical side streets, in the hinterland where last century’s sunburned, crusty hippies meet this century’s hipster dandies. It can be hard in a street like this to tell whether the gathering of a sinister throng means you’re going to witness inept fist fights or a flash mob performing Aida. Quiet and drawn in close, I sat in the waiting room, a man slightly out of time among the Janets and the Barbaras, the occasional Arthur. Blood tests were scheduled and various bland possibilities were suggested, but for now I was diagnosed with a likely vitamin D deficiency, which didn’t seem too bad, really. After the energy of Lhermitte’s, I felt briefly shortchanged.
I filled my prescription at the chemist’s outside work: small turquoise pills, little rubbery gems filled with a clear liquid. “Pure sunshine,” said the chemist, as he handed them over. “Some days it feels like they’re all I really dispense anymore.”
Pure sunshine, but as winter edged toward spring a cloudiness was setting in again. My newfound calmness was spreading a little too far. At home, I was becoming vague, dawdly, prone to staring into space. “Why did you draw sunbeams on your prescription stub?” asked Sarah one evening, hunting for change for the takeaway driver. Everything was starting to sound like a non sequitur.
“Sunbeams?” I asked, and Sarah showed me a small square of light green paper, with VITAMIN D printed at the top and a sun, drawn in orange highlighter pen, radiating heat beneath it. “I think the guy at the chemist drew that,” I said.
“Weird,” said Sarah, while I continued to stare at the prescription, wondering if it had in fact been me who drew the sun.
The Inward Empire Page 7
