As for what to actually say to my family, I had thought about this, and discussed it with Sarah.
“It’s probably best to do it once you know for sure,” Sarah said.
“I like the idea of doing it in stages, though,” I argued. “Bedding it in.”
“Drawing it out?” she said. “Leading people on?”
“But what about giving them a big shock after the fact?”
Sarah frowned at me. “It’s going to be a big shock however you do it,” she said.
“Exactly,” I said. “We’re agreed, then. Best to do it in stages.”
Up until this point, I had never, in this relationship or any other, ever used the phrase We’re agreed, then. Thirty-six years of ducking it. And they seemed, in retrospect, like thirty-six very good years.
So, armed with everything but a diagnosis and a practical sense of what MS actually entailed, I got to work. Simon had been a test run, I suppose. It had not been a total disaster. I gave myself a six out of ten on that one. Within twenty minutes or so we had been talking about his daughter and about secondary schools—even if one of us was still secretly talking about the diagnosis.
But if there’s one thing I know about test runs, it’s this: you just can’t have enough of them. So for the second test, I told my boss. It was easy, because I was a coward and I did it over email. My boss was fine about it. He was better than fine. The company would do all they could for me. I appreciated my intense good fortune, and then thought about the individual members of my family. Next up, I needed to try something a little trickier. I turned to Janey.
Janey, my greatest ally in our family, the sibling closest to me in age and temperament. At times, it feels like we have entirely the same brains in our heads, Janey and I, although, clearly, I would now have to stop hoping that this was true.
And let me step back for a moment here. I will not make a habit of this. But it feels useful to admit at this point that I have had an email sitting in my inbox for the last few weeks, sent to me by myself in the dark of night, with no body text and a subject line that simply reads: What to do with Janey?
What to do? Because Janey should be everywhere in this book. We are just two years apart and uncommonly close. We live near each other, she married my old boss—they met at my wedding—and she had her first child, Thornton, a few months after Leon was born. For years we were conspirators, as all the best siblings can hope to be at some point. And we were armchair anthropologists too, studying with interest the other people in our family and convening, every now and then, to discuss private theories. Many brothers and sisters are close, certainly. Janey and I are so close that nobody else will play board games with us. We are Cluedo close, Monopoly close, able to communicate in what amounts to fragments of code, references long since forged in private. This is the power of shared experience, and I have been told it is odd and uniquely disquieting to hear this stuff in public, when Janey and I are lapping other teams in Articulate, for example, guessing words correctly without appearing to actually say very much to each other.
Over the years I have marveled at all the small, strange ways in which we are alike, and all the big, delightful ways in which we are different. She is bold, she knows about classics and archaeology. She can read Latin, like my dad, and sometimes jokes with him in Latin. She doesn’t just believe in justice, she is willing to fight for it in public.
And yet what to do with her? Because she is nowhere in this book. She has been nowhere in this illness of mine.
I spoke to her about this the other day. It was over the phone, toddlers in the background on both sides, and I apologized for not having a clearer idea of what to do with her in my narrative: no scenes, no killer lines. Not that it’s the kind of book where anybody has killer lines.
She said it was her fault. There was the birth of Thornton, and the cocoon of early motherhood, but there was also an unwillingness to engage with what was happening—what it meant for me, and what it meant for the rest of us.
I believe that she believes that. But I do not believe that. I think that I have kept her away, not out of some misguided kindness, but out of a dark sense of self-preservation. I could not confront what I would see reflected in Janey. I did not want to see our minds begin to diverge.
So. Let me just say this: my sister and I, we went through everything in our childhood together. She has a long frame and flat feet that make her look like she is stomping everywhere she walks. She is kind and patient and fiercely, wonderfully, unpredictable. And she will not let the important things go, not ever—and what more, really, can you say for somebody?
And yet, I used her when I told her about MS. The kindest way to frame this—by which I mean, of course, the way that is kindest to me—is to say that I was so secure in my friendship with Janey that I felt I could abuse it a little. I could hone my powers of manipulation on her to better tackle the bigger, trickier problems in my family and the question of how to break bad news to them quickly, painlessly, efficiently, and effectively.
I approached the Janey problem by thinking: What would work on me? I decided it was best to get her on board, to give her a way of being helpful—a knot to worry at in private. I met her after work in the coffee shop inside Jubilee Library in Brighton. The coffee is fine here, but the view is wonderful: look out through the huge glass windows and Jubilee Square is filled with nutty Brighton life. Look up, and the entire reference section hovers above you, a floor that rests on spindly stilts, lit by three huge light wells in the roof. It is the perfect place to lend a little atmosphere to even the most mundane of conversations, and when the conversation isn’t mundane, the bustle and wide open spaces of the library seem to work against themselves to create a kind of intimacy.
We would need intimacy. I explained that something was possibly wrong and a neurologist had suggested multiple sclerosis. But it didn’t seem likely. Still, I was going to have to tell everyone else in the family about this, and would she be willing to help me smooth things over if and when it turned out to be a false alarm?
Only thinking over all this now do I appreciate just what a horrible liar I am. I was robbing Janey of a chance to have an emotional response. I pushed her past the moment of revelation and landed her, temporarily, in a moment that I already knew would never come, a moment when it had all turned out to be a big nothing. I knew, fully knew, that I would then be able to move past that false outcome to the next real moment—the it’s-all-true-after-all moment—and I still wouldn’t have had to deal with the actual instance of revelation. I would have hopped past it. I would have outplayed it.
So I was turning Janey into my pawn. I was using her. I know now that when you tell someone that something bad is happening to you, you have to remember that this is a moment for them as well as a moment for you. You have responsibilities to get them through it, and to get them through it honestly.
To bewilder Janey even further—and to give me an easy exit to the bus and then home, I had Garr saved up for the inevitable question: What is multiple sclerosis anyway? I don’t know, Janey, but remember Teri Garr from Tootsie? She has it. She was Phoebe’s mother in Friends, so she must be fine. (Yes, incidentally, she was Phoebe’s mother. But watch her in Friends. Watch, in many of the scenes she’s in, how little she actually moves. Watch the force, the deftly concealed force, with which she grips the nearby furniture. A pro.)
I got through another sister and a brother like that. Saz, the youngest and most direct of the Donlans, no match at all for my skillful dishonesty. Paul, the eldest and most distant. Saz sounded glum but hopeful. Paul sounded like a hard man in EastEnders. “I can’t say I’m happy about it,” he said, as if I had announced I was foreclosing on his launderette. “But okay.” They both asked what MS meant, and in both cases I realized afresh that I didn’t really know. I realized too how inadequate I was as a sibling. My last few communications with Paul and Saz had been the following: I’m getting married, will you come to the wedding? I’m having a baby, w
ill you come to visit? Now this.
Ben and Mum were both difficult. Mum was unreadably vague, asking, in a tranquilized way, if MS was what Stephen Hawking had. “No,” I said. “It’s what Teri Garr has.”
“Oh, Young Frankenstein,” she replied. That was enough for her: no questions, which I interpreted, foolishly, as disinterest rather than swiftly pooling fright.
Ben was a call that I had been truly dreading, so I kept it short. He offered advice. “They’ll give you three things it could be, they always do,” he said. “Two won’t be scary. The last one will. And the thing you have will be the last one and they’ll already know it.”
I cast my mind back to what Quill had said. Three things it could be. And the last one?
Dad was the final call. Dad, who had been so brilliant with Ben. Dad, who had responded to drama by taking control, by becoming an expert. I had saved him until the last because it would be like coming home again.
And I knew it would be like coming home for a simple reason. Dad does this stuff all the time. It was his job for thirty-odd years, dealing with disorders and diagnoses. It was part of the reason he got on so well with Sarah from the start—a deep fascination with things that go wrong with people’s heads. But actually, now I think of it, is fascination the right word?
For many years, my dad’s job was a little like Quill’s: observation and evaluation. He would meet clients, and he would have a few minutes to watch them and decide what might be going on inside their minds.
Social work was a distressing business, and my dad has always been a sensitive man. He was faced with daily horrors in his job (and went home each night to a house full of young children). I sometimes wonder if his expertise, his expansive knowledge of psychological syndromes and neurological deficits, became a form of protection. I don’t think he ever reduced his cases to the point where they were intellectual puzzles to solve, but there may have been a cushion provided by the process of assessment.
He was successful working like this, I think, but it had knock-on effects. Over the years, Dad became very used to studying people.
And at times he has struggled to stop doing it. As long as I have known him, Dad has been a people watcher. (Many Donlans are. My grandmother liked nothing more than sitting by the window and scrutinizing anybody who went past. She even had a term for it: gentling.) But Dad is also a people diagnoser. He cannot walk through a crowd without noting the tics and quirks around him. He cannot stop finding what he has taught himself to look for.
(Social work also fostered a flair for inappropriate conversation. I once brought a new girlfriend round for dinner. Something over dessert caused Dad to explain at great length Freud’s theory of childhood sexuality.)
Awkward as all this could be, it has flowed from the stuff I love about him. Dad has devoted himself to helping others. And through this, he broke a wretched cycle, as the gentle son of a bad father who was himself raised by a bad father.
So no, I was not too worried about Dad. I knew he could handle it.
And inevitably he couldn’t handle it at all.
“Dad,” I said over the phone one evening, Leon sitting in my lap, facing away from me, rubbing her fuzzy blonde head under my chin, “there’s something wrong with my hands.” “Arthritis?” he asked almost instantly. “Your aunt Luanne had it.”
I thought: My aunt Luanne had been a massive boozer, more like. Northern California, married to the local sheriff, she once shot her TV set because she thought it was an intruder.
But I would not be distracted. “Something else,” I said.
“Familial tremor?” asked Dad. “A shaking in your right hand? All the men in our family have it.”
Christ, Dad, is this how you treated your clients? The next five minutes unspooled like this, as Dad tried to stave off my specifics by countering with specifics of his own, controlling the diagnosis or at least delaying it, burying it among possibilities and anecdotes. Still, did I know I had a great-aunt of some kind who had become mentally incapable after being scared by a horse? Or was she kicked by a horse, with the same result? No matter either way. Or it could be a trapped nerve. It could be a problem with my foot—sounds weird, but it does happen! Uncle Marty—
“The doctor thinks it might be multiple sclerosis,” I said eventually, cutting in.
The line crackled. I said nothing more.
“Multiple sclerosis.” Dad exhaled. I closed my eyes and saw him easing back in his desk chair, trying to fit this idea into his life. I felt Leon’s hair rubbing against my chin, her skull warm and fragile.
“Like Bartlet?” he asked.
“Like Teri Garr,” I said, purely out of spite. “Bartlet’s not real.”
Dad thought for a few seconds more. “It doesn’t run in the family,” he said, and fell silent again. Maybe he was running through all the cases he had ever dealt with in social work, pulling the mug shots. Maybe part of him was preparing to slip my own photo in there with them.
“Did you deal with any MS in your work?” I asked at last.
“Once or twice,” said Dad, reluctant to continue. I forced him on with silence.
“I remember one thing,” he said. “A paper I read that I’ll try to dig out.” The thought of digging something out seemed to lend him energy in this difficult moment. “There’s this theory of MS personality,” he continued. “The idea is that people develop a way of blaming other people for the illness—they externalize it by brutalizing people around them. It’s a personality change. The pain, the confusion, chips away at you and you become cruel.”
I thought about how I had just treated Janey—but that was just me being me, sadly. “Thanks, Dad,” I said. “I’ll look out for that.”
In the run-up to diagnosis, I was diagnosed many times. I imagined it again and again, the way that some people imagine their wedding day, perhaps, or the day they graduate, or the birth of their children. I would awake from a dream of diagnosis and have a daydream diagnosis before getting up. I tried different reactions. What does this mean for me? I might ask if I was feeling bold. How many years do I have, how many good years?
I knew my own diagnosis was looming. It would be making its way to me, but how? For endless summer days, I was expecting a letter, an email, a phone call. Maybe Quill would ring me at work, and I would have to duck into a side office and be told what we both already suspected. Maybe his secretary would reach me on the bus and I would have two agonies—the agony of waiting to call her back from somewhere private, and the agony of then waiting for the meeting she was calling to arrange.
Yet, all the time I waited for this call, I was getting calls every hour anyway. That summer, Carphone Warehouse had decided that I was due an upgrade, and even though I promised them I really wasn’t, I had to answer the phone every time it rang, because it appeared on my screen as a scary unlisted number. Each time this happened, I had to get into character: I had to assume the role of the doomed hero in the pivotal scene in a movie. And then ten seconds later I had to work out which facial expression I had assumed in order to switch it when I was suddenly confronted with Carl or Ian or Jess just asking if I’d thought of moving to Android now that my contract was up. And did I want any bolt-ons?
It was maddening, but it was also a great gift from Carphone Warehouse—and I’m not talking about bolt-ons here. I was longing to take myself seriously in this moment above all others, and I discovered again and again that I just couldn’t. The world was playing this as comedy.
And then euphoria.
The fifth of September 2014. My daughter took her first steps on the day I was diagnosed—a juxtaposition so perfect, so trite, so filled with the tacky artifice of real life that I am generally too embarrassed to tell anybody about it. I still watch the film of this moment—it’s actually the film of her second attempt because I refused, righteously, to watch the first through the lens of my phone. It is early evening, after Sarah and I have returned from the hospital. Leon is standing by the coffee table in th
e lounge, able to hold herself on her legs as long as she is gripping something. Then an idea comes to her, and she decides to pursue it. Frowning, she lurches forward, knees bent and spread, arms at her sides as rigid as a Frankenstein or a Dracula doing the werewolf dance from “Thriller.” One foot jolts in front of the other and she is crossing the room, and it dawns on her: this is walking. She reaches me, palms flat and smacking against my legs, and then she collapses in laughter. I’m laughing too. I turn off the camera and yet I can remember what I said to Sarah as we both beamed at each other. “Today was a good day.”
And it was, even before Leon walked. No phone calls were involved; the letter from Quill booking an appointment had finally come a week beforehand, and Sarah was with me in the afternoon when I descended into the neurology ward once more. It felt weird to take this journey with Sarah, so I flattened it into an inane tour. That room, I remember my brother in there with a line in his head. I remember this used to be a waiting room, and I sat here with Dad while Ben had his surgery. There was a local news program on that evening: dinner ladies who wore fairy costumes as they served the kids. Dad and I had been up so long we started to laugh helplessly at the sight of them.
Quill was waiting for us in an office next to a murky fish tank. Reversal, inversion: I had been feeling pretty good, physically, for the last few weeks, my symptoms reduced to tingling fingers and not much else. Quill looked absolutely wrecked, gray skin, dark shadows under his eyes, and a long queue of patients outside.
He was direct. I can’t remember the words he used, but I remember that he was formal about it, and I remember that I found that obscurely touching—perhaps because of the firm friendship between the two of us that had been established, by this point, entirely in my own mind. I gripped Sarah’s hand and Quill told me that I had multiple sclerosis. Relapsing-remitting multiple sclerosis. No need for a second opinion: it was a classic case.
The Inward Empire Page 11
