I thought I was prepared for this. But I must not have been. Because as Quill spoke, I felt relief. A huge, warm rush of it. Relief that I knew for certain, of course. But also relief that a hundred little fears I had not allowed myself to voice had gone unmet. Motor neuron disease—could that start with tingling? (No.) Parkinson’s—that does start with tingling, right? (No.) Even MS itself could be far worse than I had thought. Primary-progressive. Secondary-progressive—maybe I had been so absent in terms of the day-to-day business of my own life that I had actually missed the entire period of relapsing and remitting and landed straight in the advanced form.
I sank back in my seat and leaned against Sarah.
Pity neurologists. Pity them. People say the strangest things to neurologists. They say: My hands feel like they’re getting bigger. They say: I feel like I’ve got three legs. I once said to one of my neurologists: “I woke up in the night and my eye, my left eye, was slipping down my face, and I’ve spent the last week with my head tilted to the right to even everything out.” People say all this, and then, even worse, they never listen to the response. “No patient really listens to a diagnosis,” a neurologist told me recently, pondering, aloud, how to improve his own performance of this difficult task. “They hear the first sentence, and then they’re gone.”
The rest is a blur. Quill explained MS to us both. He explained that symptoms vary, and can be spread across a wide range of the body’s territories. He talked about the various types of MS and countered my enthusiasm for relapsing-remitting slightly by stating that while I had the best type to get, I had the worst kind of the best type.
“Your scans are dramatic,” he said. “You have relapsing-remitting, but it seems to be highly active.”
Perversely, this was possibly also good news—of a kind, at least. It meant that I instantly met the requirements for treatment.
And through all this, I was, of course, not really listening. I was thinking: I can handle this. This sounds like something I can deal with. And I was leaning against Sarah, feeling the rise and fall of her breathing as she listened for us.
And I was also thinking, of all things, about a movie Sarah and I had recently watched: a documentary about Ferran Adrià, the greatest chef in the world, a man from Catalonia who spent half a year constructing a menu of tart contradictory delights to serve during the other half, in a restaurant that had a waiting list measured out in decades until he eventually shuttered the place on a whim. I thought of the food, which lay scattered, spiraled and arched on the plate, heavy with glossy droplets. All the food looked like something alien and unknowable, and then the taste provided a rush of conflicting certainties. The whole thing was a dance of context, context removed and context replaced, context exploded. Each bite must be dizzying, a diagnosis, a tidal-wave return of certainty. This is the power of context restored, the astonishing power of suddenly knowing exactly where you are and what you have been doing all along.
Quill walked us to the door. I suddenly worried that I was never going to see this man again. This man who had diagnosed me, who had brought my world to some kind of order. “I need to ask,” I said. “Are you going to stick with me? Are you my guy?”
Americanisms will never come easy to a man like Quill. He is too much of a witness to assume the role of the protagonist that American language requires. Still, he was game. “I’m your guy,” he laughed.
“I can’t tell you what that means to me,” I said to him, and I held out my hand like the bad soap actor I was.
He took it and then—I will never forget this—he put his other hand on the other side of mine too. I stared into his tired eyes and now I started to cry.
On my way out, I said to Sarah, “He’s amazing, isn’t he? He’s amazing. Like that chef!” I could not explain myself to her, but she knew what I meant. With great delicacy and kindness, Quill had taken me from one world and led me into another.
Suddenly, there was no time left to me.
I hadn’t planned much so far, but I had planned this: I knew exactly what I wanted to do in the days and perhaps weeks following my diagnosis. I would go to bed for about a fortnight, luxuriating in the warmth of some self-prescribed compassionate leave from work. Then I would flop around the house in a dressing gown, bony arm flung across my face, and maybe I would quote T. S. Eliot out loud until someone noticed how resolute I was being about all of this. I had mini tours planned, of the kind Tony Blair executed when he left power: traveling the country to see the spots that had made me who I am, perhaps. I imagined late-night calls to distant university friends and the odd old girlfriend, all of whom would be delighted to hear from me because I had news from, if not quite the other side, then some gray no man’s land of barbed experience that was proximate to it.
None of this happened. September was a rattling blur of Facebook messages from old colleagues, meetings at work to see if I had the right chair for my needs, cards in the post, and newspaper clippings, often from the Mail, that pretended to offer miracle cures but were really eight columns of wallowing in the horror of losing your mind and your body, with a cheery deus ex machina at the end, provided by an extra cup of coffee each morning, or by drinking hot water that had been graced with the fleeting presence of a lemon. I kept all these clippings. I even read some of them. Wretched as they are, they are also dear to me, because they represent what people wish they could do for you when they know they can do nothing: they wish they could cure you.
Leon ate all of October whole, and it was a gorgeous sight. She had chosen this strange, post-diagnosis vacuum to stage one of her mad cognitive eruptions, of which walking, working that arms-spread, knees-locked, Monster-Mash stagger across the living room on the day of my meeting with Quill, was just the first seismic rumble. Words were bubbling out of her now, proto-sentences announcing strange ambitions and desires. Her mind seemed too big for her head.
And then there was my illness. Not the symptomatic side, which had conveniently died away, leaving me feeling like a fraud as I explained my tragedy to neighbors on the green and tried to unpick the semantic space for them—and for myself—between an incurable disease and a fatal one. Instead, I was suddenly dealing with the upswing, the return volley, the counterforce: now I had something official to treat, there could be treatment plans.
This sounds like a positive development, and it was. But it didn’t always feel like that. Years ago, before Leon was born, I sat in a restaurant with a friend of mine and, surrounded by his two kids, who were running about and driving tiny die-cast cars over the tops of the tables, the underneaths of the tables, over their forearms and elbows and knees, I asked what it was like. What was parenthood like when it was exploding all around you? My friend grew serious and apparently started to channel some forgotten 1980s power ballad: he explained that the highs were very high and the lows were very low. But that’s not the defining trait, he said. The defining trait is that the highs and the lows are pushed together so tightly that you can’t tell the difference. You can’t catalog what happens in any way; you just have to experience it in an endless rush, and react as appropriately as you are able to.
The race toward treatment plans was a bit like this. The highs were high, the lows were low, and I struggle to separate the two even now.
The facts are simple. If you have primary-progressive MS, in which symptoms emerge over time and with no respite, there are no treatments available. For over a century, it was the same for relapsing-remitting. But in the last thirty years, this has changed, as a range of new therapies have come online. The rate of development is dazzling. When I was experiencing my first symptoms of relapsing-remitting MS, there were eight therapies available. By the time I was asked to make my choice, there were ten. I am extremely grateful.
But that is where the simple stuff ends.
It is early autumn. I am reading a letter from Quill. While he remains my neurologist, he explains, he is not a specialist in MS, and so he is bringing in a specialist to look after me for
the foreseeable future. He has also arranged for me to see an MS nurse regularly. I am not keen on the idea of having a nurse—not at thirty-six.
No time to think of that. I am sitting opposite the MS specialist. My new neurologist. Dr. Koenig. She is softly spoken and clearly brilliant, explaining to me that the piece of paper I am holding, which lists the ten available therapies, does not really list ten in my case, because my MS is probably too powerful for many of them. There are two viable candidates for now: a pill that is extremely effective at cutting the rate of relapses, but often poorly tolerated, and an infusion that is even better, in her opinion.
I am trying to ask about some of the scary side effects of the infusion that I have read about, and she is trying to explain that the side effects are rare, relatively speaking, and that they will do a blood test to clarify further the specific risks in my case. Mainly, though, we are both being interrupted by my dad. I have brought him along to this because I know how brilliant he was with Ben. He became an expert so quickly. I want him here to make notes, because I know that I will not be able to remember everything Dr. Koenig tells me. Sadly, it turns out my dad cannot make notes in a gentle manner. It looks, I realize with growing nausea, like he is here to invigilate, to monitor Dr. Koenig’s performance. Partway through a crucial discussion regarding what characterizes a relapse in the first place, Dad announces that his pen has stopped working. Does Dr. Koenig have one to lend him?
She is unfazed by this, of course. She works among the sick and the incurable, so managing social awkwardness is pretty basic stuff. She treats us far more graciously than we deserve, and as I head for the door, struggling to accept the scale of the decision that faces me, she stops me and says: “You will never be alone in this.” I still cannot think of an adequate response to that.
It is November. I am looking at that piece of paper with all but two of the treatments crossed off, and now I am climbing stairs, three flights of them, to visit Jennifer, my new MS nurse. I do not want to visit Jennifer, which is why it has taken me until the brink of November to make the journey. I have deleted emails. I have stuffed letters in drawers half-read.
I worry that Jennifer is going to make me sick. I don’t know why I worry this. Maybe because she is a nurse, and if you have a nurse you must be in a pretty bad way. Maybe because she works all day with other MS patients, and I worry, secretly, shamefully, that they will make clear the trajectory that I am now on. Already I have decided something: I have decided that I do not really want to meet anybody else who has MS if I can avoid it. I am suddenly scared of other people with MS and the glimpse of the possible future they provide. I know this is foolish, selfish, short-sighted, and cruel. I know that it is shameful, but still, I want to tell Jennifer straight off: do not make me join a group of any kind.
I should not have worried. Jennifer is a tiny American with curly hair and an exquisite calm to her. Her very presence suggests that everything going on outside the door has just stopped for a few moments, and we should take some time to worry only about what is going on right now. I remember little of our first meeting, which is mainly form-filling and arranging future meetings at three-month intervals. What I do remember, though, is that we sit in an office that Jennifer makes airy and cheerful despite the fact that there are no windows and the only decorative item in the room is a model of a human femur, split down the middle to reveal the textured pink bone marrow within.
Before I go, I tell Jennifer that she should know upfront that I don’t know what I’m doing—I think I mean in this disease, but also, possibly, in life—and that I hope this is okay. She shakes my hand briskly and tells me something extraordinary. She tells me that my disease is unprecedented. That everyone’s MS is. “You will become the only expert there will ever be in your illness,” she says. And I believe it. I creaked up the three flights to meet Jennifer. I practically skip down them. What she has told me sounds like the preparation for an adventure.
And then, finally, I am in another room, in another local hospital, and I am facing two infusion nurses who are here to learn of my treatment decisions: which of the two miracle drugs—my description, not anybody else’s—have I decided to take?
As I remember this meeting, and as I described it to my dad afterward, I was extremely eloquent and calm. I explained that this decision was impossibly difficult, harder even than my diagnosis, and that this was because inside the dawning realization that something was wrong with me, inside the nested realization that certain things would never be right again, here was something I could actually do about it. A decision. And that decision was terrifying. How strange: I was happy to be knocked about by fate. I was used to it. But now, after making this decision, I could no longer be blameless. Everyone had explained that the treatment plan was ultimately up to me, and although I had pretty much begged everyone to make this decision for me anyway, everyone had, infuriatingly, stayed true to their word.
Of course I blamed the people who would not make the decision on my behalf: Sarah, my dad, Leon perhaps, as I rocked her on her pillow each night, as hot air seemed to pulse between my ears, my eyeballs itchy and scorched. This was not MS I was experiencing: this was the endless migraine of angry indecision.
Still, to live with all that and still be so eloquent, I told Dad afterward. Not bad, I concluded.
Except my memory is wrong. None of this happened the way I remember it.
“You were so sweary that day,” Sarah said to me recently. “It was ‘fucking this, fucking that.’ It was, ‘I’m not fucking taking these drugs.’”
“Was I really?” I wanted to ask, but I knew that she was right.
And maybe, if I really put the work in, I can remember the swearing after all. Those fucking drugs.
It was the side effects I could not get past. The best drug available had these extremely rare side effects, and I knew I could not live with that kind of worry.
I should have taken that drug. I knew that then and I know it now. I also know that I could never have taken it, because good as it is and as unlikely as the truly awful side effects were, I could not have lived with the side effect that would have definitely turned up—the side effect that involved lying in bed every night imagining fluids building up over time, imagining pipes bursting and buckets overflowing, imagining all the dark, irreversible things that a life-saving serum might be doing inside me. Instead, I rejected medicine. I rejected this whole choice that had been flung at me. I told the infusion nurses I wasn’t going to take either of the drugs.
And then, just as quickly, I understood that I was going to make a choice after all.
I would love to say that it was the thought of Leon or of Sarah or Ben that won me around. But it was something I saw in the eyes of one of the nurses, both of whom had that classic NHS bearing: compassion tempered with steel. What I saw was a sense that I didn’t realize how good I had it, that after centuries of MS ravaging people, unstitching them day by day with no hope of treatment at all, I was alive in the first twenty years in which there was anything at all that could be done for someone like me. Twenty years ago there was no treatment. Now there were ten. They were all imperfect, of course, and none of them would cure me, but they were something. And I had to choose something.
I also understood that I had traveled further than I could have imagined already. I had become Ben at last: so angry that I wouldn’t countenance my options. Now it was not so huge a leap to travel past that and make a choice of my own, even if it was the wrong choice. The wrong choice, yes, but not the wrongest possible choice. So I chose the pill.
And then things slowed down. We had another quiet Christmas, just the three of us, as the days dwindled away to nothing and the sea on the coast road turned as gray as a piece of slate. On a cold white morning in January, the wind roaring outside, I sat down in an armchair and pressed that morning’s pill out of its packaging, where it sat next to a little image of the sun. The evening’s pill, sat next to an image of the moon, awaited me, and eve
ry day and every night for the foreseeable there would be suns and moons and pills to go with them.
I swallowed the pill and gripped the edges of my chair, like a time traveler in a movie, about to be hurtled through g-forces and into the unknown. An hour later, bouncing Leon around on my knee, I felt it, a hot prickling at my temples that spread to my cheeks and nose. “I’m having a hot flush,” I said to Sarah, laughing at the painful pleasure of it. “I read about these. It’s working. It’s working.”
The First Recorded Case of MS
MS was first described in the 1860s, and it is sometimes viewed as a nineteenth-century disease: a disease of cities and factories, pollution and poor living conditions. Some neurologists argue, however, that the nineteenth century was merely the right time for MS to be identified, since industrialization meant that medicine was also going through its own period of rapid transformation.
And every now and then someone uncovers a historical case that could point to the appearance of MS before the nineteenth century. It is enduringly hard to make a judgment, partly because the historical record is not filled with detailed descriptions of neurological patients and their individual ailments, and partly because MS’s vast constellation of possible symptoms can make the disease tricky to diagnose even now.
Of these early cases, two tend to stand out. In the twelfth century, a young Icelandic woman named Halldora grew weak in the limbs and gradually lost the ability to walk. For three years she was bedridden. She saw only slight improvements in her condition until Thorlak Thorhallsson, a famed religious healer who would become the patron saint of Iceland, appeared in a friend’s dream and urged Halldora to go on a pilgrimage—a pilgrimage that, once undertaken on a stretcher, eventually cured her.
The Inward Empire Page 12
