MS has a difficult relationship with diagnosis. Historically, its riot of symptoms has been hard for doctors to make sense of, particularly in the days before MRIs, and it is also not well understood by patients, many of whom will have little initial comprehension of the disease they are being told that they have.
And the moment at which diagnosis is delivered has sometimes been problematic too. One of the worst diagnosis experiences I have ever heard about I found as a footnote in T. Jock Murray’s book Multiple Sclerosis: The History of a Disease. A female patient being diagnosed by Dr. Samuel Alexander Kinnier Wilson in 1922 could still recall, many decades later, exactly what he had said to her. And he had said this: “It’s DS. Tough luck, old girl. You’ll be in a wheelchair in four years. That will be five guineas.” (DS refers to disseminated sclerosis, an earlier name for MS.)
I say that this is only one of the worst diagnosis experiences I have come across, because for years with cases of MS it was often thought unwise to inform the patient of their diagnosis in the first place. Sometimes the doctor would tell a relative instead. Sometimes nobody at all would be told. I appreciate that MS is a disease that has had no viable treatments up until the last few decades, but it is hard to see the purpose in this dishonesty. It is also tempting to see institutionalized sexism at work, since the majority of MS patients are women.
I have become fascinated by the art of delivering a diagnosis. Over the last few years I have benefited from a diagnosis that was delivered to me with clarity, kindness, and just the right degree of optimism. Dr. Quill made certain that I understood the seriousness of what he was telling me, but he also ensured that I left with a sense that my life would continue, and that there were things that could be done and people who would care for me. At the many moments since my diagnosis in which I have lost my way, it is not because of the manner in which I was initially informed of my disease.
Dr. Omar is an acquaintance of mine, a young physician who is planning to specialize in emergency medicine, and who regularly works shifts in ER departments. As a result of this, he gives multiple diagnoses every day, and has a lot to say about the best means of delivering vital information to a patient.
“I do think that the packaging of a diagnosis, the words used to convey it, are as important to the lived experience of an illness as the concepts of a diagnosis,” he explained to me recently.
I asked Dr. Omar how much he had been formally taught about this aspect of his job.
“At medical school we are taught about communication skills and things like ‘breaking bad news,’” he said. “So there is a general awareness of the importance of the mode of communication and not just the content. And medicine in the modern era of medico-legal paranoia and defensiveness means that you frequently see courses advertised for communication skills and so forth even aimed at senior doctors, not just junior ones. That said, there is a huge spectrum in skill that you witness in your day-to-day job.”
One thing Dr. Omar told me about diagnosis has really stayed with me. He told me that with disease it is often a patient’s “story” that is truly broken. “That phrase is not my own,” he admitted, “but it means that it’s their own conception of their life trajectory which has suddenly changed and been compromised as much as their physical function.”
This is yet another thing doctors have to take into account? I asked.
Dr. Omar nodded. “And I think it’s important to be sensitive to this, to the football enthusiast whose broken ankle also breaks their pastime, their release, and their fix of community, say. If done well, a diagnosis can be packaged with its implications and its impact on their life. Even better, it can be made a collaborative process, where you can work with a patient to identify how to tackle something that may impact them beyond just their body.”
Dr. Omar was talking about an emerging branch of medicine called narrative medicine, an interdisciplinary field that sees the way a patient’s story unfolds as a potential tool that may play a role in the process of healing, if handled correctly, and may also encourage self-reflection in the physician.
Narrative medicine appeared in the 1980s as a response to an impersonal form of medicine that fails to take into account the psychological issues that weigh on both patient and doctor. It is not surprising that it emerged during the period in which Oliver Sacks was writing his case studies, which hum with compassion and curiosity.
“Clinical medicine is not biomedicine or physiology,” Dr. Omar argued, clearly falling into step with a favorite subject. “It is science as expressed through people, in their symptoms and signs and their language… In the diagnostic setting doctors are basically eliciting patients’ mixed-media stories, teasing them out and later recounting them in a stereotypical, understood code.”
I suggested this sounded pretty complicated, but Dr. Omar said it felt like a natural process. “When doctors are talking to patients they are speaking in story,” he said. “When doctors discuss patients with their colleagues they speak in stories; when they document a patient’s sprawling account in the ordered, mannered form expected of clinical documentation they are just translating a story into another type, one that makes things neat and treatable. Stories are what doctors deal in, and are the construct by which doctors know illnesses. This is an unspoken, often unseen aspect of clinical medicine, that single words or turns of phrases can be pivots around which a whole diagnosis and a life can change.”
That insight could have come from Sacks himself, I think, a man who understood that it is fairly easy for disease to become a story in the first place, and who knew that, if you are particularly unfortunate, disease can become the only story.
I have still not told Leon about my illness in a way that she can understand. She knows that I take pills every day—even now I take a few every morning and lunchtime for spasticity—and she knows that there is something wrong with my brain. But I am waiting for the right moment to explain everything, to “speak in story” about my illness. And that means waiting for when she is ready to hear it, and when I am sure I know how to tell her.
9.
The Explorers’ Club
WE TOOK A TRIP RECENTLY, just Sarah and I. We set off in a little boat, chugging out toward the horizon to see the wind farm that has been slowly coming together at the limits of Brighton for the last few years.
This wind farm has bewitched Sarah from the start, its strange, spindly architecture calling to her ever since it began to rise out of the sea. People sometimes ask Sarah why she’s become so obsessed with the boats that come and go in this plodding stretch of the English Channel, why she downloads apps that allow her to track nearby craft, why she collects books on maritime lore, on wrecks, and why she spends so much time on the bus staring out at the wind farm as it spreads across the horizon. She can never offer much of an answer, or rather, she knows that no single answer covers it all. Is it a reaction to suddenly being so close to the coast? A way of getting a breath of air, when all three of us are crammed into a tiny bungalow? Is it a bit of distance from all this talk of neurology, of treatment plans, of so much helpless fretting?
We have all succumbed to the wind farm a little. Across the last few seasons, it has tangled itself with our waking and sleeping hours. I report back on progress when I get the early bus to work on a Monday, and friends living further along the coast tell us of clear nights when they can hear the sounds of construction drifting over the surf. Even Leon has looked at the farm through the binoculars. She has looked at it for a few seconds anyway, before she is distracted by the clouds, by the birds, by her own thoughts.
It feels dangerous to get up close to something that is so perfect from a distance, gleaming metal poles arranged in neat lines, strung with improbable rigging and lit by the shimmering point at which the sea meets the sky. We head out with a local dive captain who has gambled on running a tour of the turbines.
It is eight nautical miles from land to the wind farm, and that is space enough to watch the sea move
through many forms. As we leave the marina, Leon and her grandma waiting on the dock, the water’s an oily mineral green, little white peaks bouncing away from the bow. Twenty minutes from land and thick cords of froth are tumbling and tangling in our wake as we pick up speed.
Sarah’s giddy with happiness. Forty minutes out and we suddenly notice that for the last few miles we’ve been entirely alone, Brighton disappearing into the yellow bloom to the rear of us, while around us buoys are the only landmarks, bobbing frantically as they pull against submerged tethers. It does not take much to leave the world behind, and in its place we grow quiet and introspective.
“I’ve been thinking about what happened,” says Sarah. She’s almost shouting, but over the chug of the engines it still sounds like a whisper, warm and conspiratorial.
“It is an adventure story,” she says. “But I’m not sure it’s the adventure story you think it is. Is it Lewis and Clark? The Northwest Passage? Or is it Don Quixote?”
The minute she says this, it starts to make sense. “Don Quixote, driven mad by his reading, by his dreams of the way things are meant to be,” she continues. “With me as Sancho. Now and then.”
She laughs. “A story of perceptions and misperceptions.”
She leans in close. “And since we’re all Don Quixote really, I guess that means you’re still one of us.”
My dad once told me that you should read Don Quixote three times in your life.
“So you’re saying,” I say to Sarah after a lengthy silence, “that you don’t need to have a neurological disease to misunderstand your own life?”
“Yes.”
“But it helps?
“Absolutely.”
Another buoy bobs past. “All this self-knowledge, and nobody had to die,” laughs Sarah. I think about this too. Nobody died. But something did. My complacency died, and I slowly realize I was better off without it. Maybe it was years of complacency that were making me feel so anxious about everything. I don’t miss that sense of my own invulnerability that I must have had before this began.
It’s cold this far out from land, and a slight breeze is picking up by the time wind-farm platforms start to appear around us. They’re beautiful and stark: cylinders painted a bright yellow, topped with gantries and cranes. These platforms are the little stubs we can see from the coast road, the bases for the turbines themselves. Out here, they already tower over us, but they’re still only a fraction of their final height.
For the last few minutes we’ve been able to see a complex gray mass on the horizon, “It’s the MPI Discovery,” gasps Sarah, star-struck by her favorite vessel suddenly up close and looming. The Discovery grows bigger and bigger before us, losing none of its alien nature, its industrial surrealism, as we approach. It looks like a freighter, a mini tower block at one end attached to a red hull—but that hull itself has been lifted out of the water by those thick metal legs that reach down beneath the waves.
Soon we can see the sun reflecting from windows, thin lines of cabling stretching from cranes and pylons. At the stern is a giant propeller, raised clear of the water and hanging in the morning air. The Discovery seems weird and perfect resting above us: an improbable tool for the construction of an improbable project. I tend to think of otherworldly things as being insubstantial, ghostly and gossamer, but this vast ship, lifted out of the sea and hanging on the horizon, is the most otherworldly thing I have ever seen.
On the way home, we sit toward the back of our boat. There is a diving frame, made of some sort of scuffed silver metal, standing over the stern, a strange doorway opening out on to the ocean.
On a Saturday morning before I had gone to hospital for my Lemtrada treatment, I had sat with Leon in a restaurant in Brighton. The light was good and Leon was in a sweet mood, swinging her legs beneath the table and delighted that the days of highchairs were behind us. While we waited for drinks, I pulled out my phone and took about thirty pictures of my daughter, one after the other, for no good reason beyond the fact that she was there and so was I, and the phone had battery life and a bit of storage. When I look at the pictures now, what amazes me is the difference between each one. From one picture to the next, her expression is always changing. She’s bored. She’s delighted. She’s hungry. She’s considering a complicated idea. She’s spotted someone she thinks she knows. She’s pretending to be a pug. All this in the space of fifteen seconds.
This is a glimpse of the speed of thought. Or, more specifically, it is a glimpse of thought as it exists during the early starbursts of myelination, when it is rangy and overwhelming, and when there is nothing between the rushing conception of something new and the way it tugs at the facial muscles. As with so many things about Leon, it delights and frightens me. So much is happening to her every day, which means there is so much to be missed.
It’s all a bit cruel: for the time I was apart from Leon in hospital, I think I became the parent I want to be. I slowed down, ignored the phone—it didn’t work anyway—and I read books and allowed reading to carry me back into a world I had missed. I watched people, perhaps too much. I thought about people I knew and would like to see again.
I return home from hospital to the tentative pleasures of an early spring, and the geographic rash finally flares and then fades. Red islands, raised and felty, spreading around the chest and waist, forming archipelagos that seem to reach out from one wrist to the other. They burn, these fresh landscapes, but only softly. They warm me.
As the red marks recede, I realize that I don’t want the virtues I fell into in hospital to fade as easily. The first morning back in my own bed, I instinctively reach for my phone upon waking. As my hand closes around it, I suddenly understand, with a faint nausea, that I don’t want this. I don’t want to start worrying about the games industry. I don’t want to start fretting over social minutiae or poking around Amazon for books that will go straight on to the shelf because there is no time yet to look at them.
For the weeks leading up to my hospital trip, I was off my old medication, and off any medication at all, except some light things to deal with spasticity. I got a chance to see what MS might be like with nothing between me and it.
When I had last experienced it without drugs, it had still been a little thing. But now, without my pills to protect me, it was a big thing. It was like a great wall approaching, like the huge flat face of a bus rushing up and hiding everything on the other side of it. Full-blown MS, even at this early stage, can be an insistent and bullying disease. It wants all your attention. And it will have all your attention. I couldn’t focus. I could barely do my job or talk to my wife and daughter. I walked into things. (There is a joke about this: A person with MS walked into a bar. That’s the entire joke.) I regularly forgot what I was doing while I was doing it. I couldn’t sleep because of spasms in my legs and arms, and every trip into town required regular rest stops: you need vast reserves of small talk for that kind of walking. Why talk, though? All I could really engage with was this thing that was pushing up against me, this endless distraction.
Now at home, as the hospital drugs wear off, MS starts to intrude again, but it feels much gentler. For a few days, it is just familiar electrical sensations, a friendly tingling and glitching.
Four weeks of isolation follow my infusions. Four spring weeks in which I am unable to leave the house or see anyone apart from my immediate family—this amounts to Sarah and Leon, the only people I really want to see anyway. Our tiny bungalow on the outskirts of Brighton becomes a spaceship. The porch becomes an airlock where Janey drops off packages from work and the odd cake. I wave at her through the window as she backs out, wheeling her son in his pram. A developer sends me a massive card, signed by everyone on the team, and I find myself crying for an hour: they make a game that is concerned with pure freedom, in which you are a robot who is also, undeniably, a child, and you soar through the air and explore rocky islands that float in the sky. Freedom! I look out of the window and watch the wild-flower garden on the green st
arting to come back to life after the winter. The grass grows glossy and pleasantly ragged. Soon the sparse and scattered trees will be rushing into pink blossom.
It is perhaps slight overkill to stay in the house, but I am anxious to do all I can to avoid infection. I have little immune system to speak of, so I have to wash my hands constantly. I manage to duck most problems. To avoid listeria, I need to ask myself before eating something: Do the French like this? Eggs, dairy, sauces, cold meat? If it’s too French I have to skip it. A strange rule of thumb, but it seems to work.
For four weeks I get up late and stumble around a house filled with sunlight: light from all angles, a golden bloom erupting in every room. It seems crazy that I could ever have struggled with this place. It is beautiful, compact and strange, all those rooms coming off the center, with views of the green offering cameos of crows and magpies and the very occasional pheasant, witlessly elegant and still. At night, fox cubs dance and spring in the garden while their mother patrols, head held high against the darkness. I sleep during much of the day, but I am often awake through these quiet hours, happily staring out of the window, even when there are no darting animals to draw my eye. Happy just staring into space, I am at my mindless best. I remember that I used to worry about middle age. I saw it as a dimming of curiosity. It now seems that I am just as curious as I ever was, in every sense of the word, sadly, but the things I am curious about have shifted, to birds and to foxes.
Over the course of this month indoors, my symptoms slowly return to something that approaches my pre-treatment levels. My left hand is lost to static once more, as I suspected it would be, and my spasticity is back. My eyesight had deteriorated over the last few years—I very much doubt this is MS, to be honest—and I have to buy a magnifying glass to read my phone, an affectation that is so perfectly suited to me that Sarah doesn’t even notice it at first. It is like when I first told my friends I had MS, and that one day I might have to walk with a cane. One of them frowned and looked at me with his head tilted. “Don’t you walk with a cane already?”
The Inward Empire Page 25