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The alphabet of months: a year of living with multiple sclerosis

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 ashamed to tell anyone about it.

I write a lot of notes to myself these days, but this one is different. Remember the body. A strange thought. How could I forget it? And yet I do.

For now, the body can often be ignored during the day, all thoughts of it swept away, returning only with the odd twinge or flutter. At night, though, with the radio silent and the lights off, my wife and daughter sleeping, the body is suddenly right there again, its unusual new voice amplified by the absence of other distractions. It is not happy. The feet tingle. The fingers sparkle with random jabs and jolts. The spine hints at sharp alien structures and moaning cavities, and there is something behind the eye that wants to splutter and grouch. As I ease out of bed every morning, it is such a thrill when my feet touch the ground and my legs support me. Again! Another day and it still works! Despite all this, I have not remembered the body. Not this year.

In the early days of an illness there is simply too much more to take in. Last September I was diagnosed with multiple sclerosis, a disease in which the immune system mistakenly attacks the myelin sheaths coating the nerves in the brain and spinal cord. Myelin is wonderful fatty stuff that both protects the nerve and enhances neuro­transmission. MS is like a stripping of the wires. As a result, vital messages muddle themselves, or vanish entirely.

The illness touches the body and the brain. It undermines the bridge between them. The nature of this relationship, not to mention the unpredictability with which MS works its nasty magic, also brings the mind itself into play, however, and the mind can cause all kinds of additional trouble. I should remember the body because physical problems, although frightening, allow me to give this wayward collection of symptoms a kind of shape – and because everything beyond the body involves the tricky intrusion of judgement. I have had MS for a little over a year and this has been the surprising, sometimes embarrassing challenge in my particular case: where does the disease end and where do I begin? What is the illness and what is just my maddening response to it?

Exhibit A: Lhermitte’s sign. Lhermitte’s was one of the first indicators that something was going wrong inside me, but in my first few months with MS I clung to it especially tightly because it had taken on a wider significance. It’s not that it was all-encompassing or even particularly painful. Instead, it had started to feel emblematic.

Lhermitte’s sign, I would explain with a world-weariness I had yet to earn, is an electrical sensation that runs down the spine and into the limbs. It is fairly common in people with MS. What I found interesting about Lhermitte’s, though, is the seemingly unimportant historical detailing. Jean Lhermitte, the French neurologist and neuropsychiatrist who published a report on this particular phenomenon in 1920, was not the first to describe the sensation, and it isn’t actually a sign, either, because it is not visible to an observer. Lhermitte’s sign is not really Lhermitte’s sign, in other words, and that, I would conclude with whatever flourish I could muster, is all you need to know about neurology.

I still get a quiet thrill from such arriviste certainty but I have started to understand that there are other perspectives available. After all, what I could be telling people is this: it took seven months to get an MS diagnosis but in fact my neurologist worked it all out in five minutes. The weeks that followed were just a hunt for the necessary proof.

 

***

 

In February 2014, I arrived at the outpatients’ building of the Royal Sussex County Hospital in Brighton with a variety of strange and alarming symptoms, the most striking of which was an inability to do up the tiny buttons on my baby daughter’s bedclothes after her evening bath. My hands were numb, and they had temporarily ceased playing along when it came to precision work.

My neurologist made me tap my nose with each finger, he whacked my knees and elbows with a little rubber hammer, and he had me walk up and down while he timed my steps. Mostly, though, he listened to me and watched me as I spoke. I told him about a spiteful pain spreading along my limbs, and he spotted and then disregarded nearly invisible things, such as a shaking in my right hand which turned out to be a harmless hereditary tremor passed down through my father’s side of the family. Throughout our chat, I felt deftly, benignly scrutinised. It was all strangely intimate. And then my neurologist stunned me by saying that he had worked out that there was something wrong with my spine, and that it was possibly, very possibly, the first sign of a scary illness I had probably heard of. He was on to me immediately. He had rumbled my body’s secret.

Fear and wonder: I suspect these emotions are close relatives. They are both responses to the extreme, to the extraordinary, and so I found them coiled tightly together as my neurologist explained what MS is and what it could mean. The fear was for my daughter, my wife, my job, my mortgage, but also for the suspicion that, even if MS didn’t unravel me by itself, I would prove unable to resist the temptation to use it as an excuse to retreat from the world. And the wonder? I remember feeling wonder that a quiet, watchful doctor had discovered so much in such a short period of time.

Walk toe-to-heel and tell me how you’re feeling: it turns out that a neurologist is a bit like a highway patrol officer and a bit like a counsellor. From my experience, however, I would argue that they are ultimately detectives. The brain makes sense to these people; I have tried to keep that in mind these past few months as I have attempted to make sense of it myself. What do I choose: Lhermitte’s wayward history or my neurologist’s calming reason? Ambiguity and confounded expectations, or the pleasing certainty of a police procedural?

The very facts have been difficult to navigate. MS today belongs to the fuzzy world of averages and estimates: the average age at the point of diagnosis is 37 – I was 36 – and, according to NHS statistics, it probably affects about 100,000 people in the UK. The global tally is roughly two and a half million, and the illness is far more common in higher latitudes, which is why it is increasingly being linked to a lack of Vitamin D. I’m told by my neurologist that about half of all MS patients can walk unaided 20 years after a diagnosis; the disease most commonly causes problems with balance, muscle movement, co-ordination and fatigue.

A coloured MRI scan of the brain of a 35-year-old MS sufferer. The bright white areas are lesions. Photo: Science Photo Library

MS is degenerative and incurable, but for people like me who have the milder “relapsing-remitting” form, in which the symptoms come on in sudden spikes and then fade or even disappear for periods of time, the drugs that slow the overall progression are continuing to improve at an exciting rate. If I had developed MS 20 years ago, there would have been no treatments available. Two years ago there were eight. Now there are ten, although access to them varies – as does the time it takes to reach a diagnosis. I am extremely lucky and the NHS has been incredible: I am now on one of the latest drugs to be approved.

For patients suffering from the progressive forms, however – where there are few periods of relief to speak of – there are still no treatments. Equally, while there is hope for an overall cure, the sense I get from my doctors is that we remain at the point of trying to understand the true intricacies of the disease. This is a period of rapid progress but we are still heading uphill. As an example, the pills I take twice a day come with a leaflet that contains a page describing how the manufacturer thinks the drug operates. This is where we stand with MS: some things appear to work and we suspect we may even know why.

Public awareness of the disease is also hazy; most people don’t know very much about it. According to a recent poll conducted by the MS Society, 61 per cent of people with MS have been accused of being drunk at some point when they are only exhibiting their symptoms. Speaking of symptoms, 49 per cent of the population are unable to name even one.

A year ago, I couldn’t, either. MS meant vague associations with Richard Pryor, Jacqueline du Pré and President Jed Bartlet from The West Wing, as well as a certain degree of confusion with muscular dystrophy, cerebral palsy and any other illness that hides behind a musical two-word name. Bartlet is the element that many people who watched the show can remember – we could rename MS “Bartlet’s disease” – but even then how much do people really recall? “Oh, you have Bartlet’s disease,” a friend of mine will say, their eyes suddenly bright and alert. “What happened to him in the end?”

The answer is that the show’s creators stopped writing about his adventures. I haven’t been able to stop thinking about my own. MS was so much of a mystery to me in the early days that I couldn’t help but be drawn into the murkiness. Lhermitte’s and my desire to see patterns, powered by an ignorance brought on by the fear that if I dug too deep I might learn something I didn’t like, helped foster a suspicion that neurology was a jarring, incomprehensible wonderland where any underlying certainties have been eroded or rendered perverse.

Or rather, it was Wonderland itself. As soon as I told friends that there was something wrong with my brain, they would inevitably start to invoke Alice and her tumble through the earth to a place where clarity had ossified into a maddening kind of literalism, where everything was familiar and yet nothing made much sense any more. Alice in Wonderland is, apparently, a global shorthand for any troubles with the head. Before my illness, I occasionally used to wonder how Lewis Carroll works in translation, when it does not have the staginess of the English language with its trap doors and its trick staircases to support it. I now see that there is something terribly universal at work in Wonderland: a shared fear that stuff might happen to you and then nothing in your life will ever again operate to rules that you can fully understand.

***

Compounding this, I was constantly hearing about a world of possible outcomes, many of them devastating, that I hadn’t yet experienced and might not have to. MS can leave you in a wheelchair; it can render you practically mute through problems with swallowing or word blindness; it can cause psychiatric as well as physical symptoms. The list of the things it can do to you is almost as long as the list of different parts of the body that can be affected. Or it might just ruffle your hair a bit and then step back.

I knew that very bad things could be coming my way but I also felt dangerously, foolishly healthy. Up to a point: sure, most of the scary physical stuff is in a holding pattern, bright lights in the sky, possibly growing closer. Meanwhile, though, the runways are clogged with problems of the brain and phantoms of the mind. When people ask what it’s like to live in a body that’s become unruly, I may not be able to tell them about specific shocks, like a day when my legs gave out at the supermarket, but I realise that I already have a few things to say. I know that you learn to distrust your own body – and then you learn to distrust your own sense of distrust.

So, from my own fiercely limited experience, let me tell you how the newly diagnosed sometimes feel. They feel lofty, as though their illness has given them some wider, more panoramic perspective. They feel perversely special, as they have something rare, even if it is not precious. They feel invulnerable, because something has finally happened to them and maybe it will be the only thing that ever does. They feel lost and compromised, as if their true identity was killed in the instant of diagnosis. They feel grateful whenever something small suggests that they are still the same as everyone else.

Mostly, I think, they do not feel any of these things for very long. Throw in the guilt and difficulty, too, that comes from having to share all of this with those around you. My own family has been surprisingly good about my diagnosis, perhaps because a deeply cherished fatalism has saved some of them from too much in the way of a surprise. After denial, my dad has steadily become an expert. My mum has fought to maintain a cheery distance from the facts that extended to a phone conversation during which it became clear that she thought I had motor neurone disease. They care and they are increasingly watchful, and in most ways it seems that my illness has merely made them more thoroughly themselves.

My wife, meanwhile, is shaken by our precarious new reality but she has dealt with so many of my imagined catastrophes over the past few years that it is easy enough to transition to something real. She probably expected a few lows, but I think the highs have taken their own toll. I am more present now and less able to sleepwalk through the day, as I used to. I have also, through necessity, become a deeply incautious optimist over the past 16 months, and this occasionally tips into something a little bit crazy. Sarah will return home to a dazed baby surrounded by dozens of teetering Lego palaces I’ve been constructing all day. “Oh right,” she’ll say, adopting the briskly jocular tone she probably employed when she worked as a nurse. “You’re manic again.”

Photo: Laura Hynd for the New Statesman

With MS, things rush into the atmosphere and may burn up quickly and it can be frightening to realise that some of these things are not real. One day a few months ago, I was putting together an Ikea bed – manic again – when suddenly I looked up and realised I didn’t have a clue what I was doing. I had the parts and I had the instructions, but I had no idea how these two elements related to each other. This feeling persisted for half an hour. Somewhat ironically, I had to go and find a place to lie down while it passed. But when I asked Sarah if this was worrying, she said: “Oh, man, you always get like that when you’re putting stuff together.” She’s right.

How about this, though? During even the simplest of thought excursions the air can thin while a kind of dizzy, high-altitude poetry kicks in. Hunting for a calendar to write down a doctor’s appointment before I forget it, I’ll forget calendars themselves and ask my wife for an “alphabet of months”. Language feels out of reach, individual words become cumbersome and I struggle to put them together neatly. I write about video games for a living and the writing now sometimes feels like translation. I have become clearer as a writer but it is at the expense of speed, of flow and of clear certainty in what I am doing. At least the actual games have helped: little safe houses of simple tasks and wordless logic, places to experiment freely with disaster.

When I look back, it becomes clear that language is at the heart of many of my problems, real and imagined. Even when I’m thinking straight, I am still trying to describe sensations that are internalised and involve aspects of myself that I have never had to come up with names for. MS has given me an inside: it has opened up all the territory of the interior – the skeleton, the organs, the strange connections strung between them. It has made me aware of these places, and it gives me irregular causes to think of them every day. But it has not given me the language to discuss the things that go on there.

Take Lhermitte’s once again. When I first started to feel its effects, I spent a long time trying to classify the particular kind of wide, closely corrugated buzz I got from it. I initially wanted to say it felt orange somehow, or perhaps friendly. A sympathetic jolt! In the end, the thing I should have mentioned – the clinically significant thing – is not how it feels but that it can be reliably triggered by moving my head forward. Voilà: a cervical spine lesion comes into view.

It doesn’t help that even the most physical symptoms of MS mess with the mind a little. Sometimes frighteningly, as when prolonged pain in the intestines tricks me into wondering if perhaps I have bowel cancer hiding behind my MS. Sometimes even amusingly. Over the past few months, every door handle in the world has suddenly moved three centimetres away from me. I will grasp and come up empty as my body’s awareness of its own position – the technical term is “proprioception” – has started to weaken. Equally, a recent relapse meddled with my long-distance vision, separating a single three-dimensional image of the world into overlapping, ­two-dimensional images. The bus I catch each morning, which usually says “Brighton Marina” on the side, one day suddenly read “Britch Mar Marnimar”: a destination I quite like the sound of. I don’t find everything so jolly. I can feel a little trapped as a new invisible symptom flares up and I alone have to try to make sense of it – or at least find the right words before someone else can make sense of it for me. I have to probe but I also have to attain a certain distance and objectivity regarding what I may think is going on. If you want an easy sense of how tricky the relationship between the mind and the brain can get, consider the conceptual nail bomb that is the expression, “It’s all in my head.”

Reading around the subject a little, I have come to realise that language plays such a crucial role with all neurological illnesses because neurology in its own right, despite its SPECT scans and MRIs (and perhaps precisely because its worst mischief plays out in secret, in the dense matter of the brain, in the delicate hidden filaments of the spine), is often, like Wonderland, a thing of words. The real work for the professionals is to pick through the testimony, to find out what is actually going on and to translate the muddle of evidence into the cold terminology of a diagnosis.

 

***

 

Even the professionals can get frustrated. I have recently read Reaching Down the Rabbit Hole: Extraordinary Journeys Into the Human Brain (Atlantic Books), in which the Harvard neurologist Allan Ropper and his co-author, Brian D Burrell, argue that the unique challenge of neurology comes down to the neurologist’s primary source of information – his patients’ sense of their own experiences – being, by the very nature of many neurological illnesses, frequently unreliable.

Ropper believes in listening to the patient “as if to a book on tape”, but his annoyance shows through when the mind compromises the brain. In the middle of the book is a chapter dedicated to “malingering, shamming and hysteria” – to the way in which, besides navigating the confusing world of stroke victims, Parkinson’s sufferers and people with motor neurone disease, he encounters a steady stream of people who think they have problems that they don’t: medically impossible stammers, memory loss that helpfully covers infidelity, paralysis requiring peculiarly fine muscle control in order to exhibit itself.

I think some of my own symptoms over the past year would land me in this ­chapter. There’s no ducking the fact that I have MS and I am definitely not trying to fool anyone, but I had an irritating stammer that went away while I was reading Ropper’s book, and now, whenever word blindness sets in, I try not to give up on the hunt for what I was after quite so easily.

Like my own neurologist, Ropper has managed to make me feel a lot better, and this goes beyond his ability to peel away the real stuff from the imagined. Although he may steal his title from Alice in Wonderland, Ropper’s book presents a different perspective on neurology – one that I have ­encountered before. A brisk anecdotal tour of a ward, a lively tale of adventure, filled with patient histories and puzzling symptoms waiting to be understood, Reaching Down the Rabbit Hole is a detective novel, and despite his flapping white coat and squeaking Crocs, Ropper is Humphrey Bogart, cerebral yet tough and blessed with a terse wit. Beneath a clever stylistic choice, an important point is being made. Neurology is about fighting Wonderland: Dr Ropper is saying that his world makes sense and that although the logic may be hidden, it’s still there somewhere in my world, waiting to be exposed.

The doctor as detective is another cliché, of course, one that has been exploited rather elegantly in TV dramas such as House, which transposes the drawing rooms of Baker Street to the teaching hospital and the MRI tunnel. That said, it has made me realise that the past year may have been harder than it could have been, because initially, when offered a choice, I fell for the wrong cliché – the one stating that diseases of the brain must be relentlessly befuddling to the mind, too; the cliché arguing that neurology is the realm of Alice and the frumious Bandersnatch, and that it is incomprehensible, regardless of the angle from which you approach it. This is certainly true, unfortunately, for some illnesses and some sufferers, and it is magnified horrifically in the absence of a diagnosis, but steadily what I have come to understand is that in the early days of my own neurological illness, I was struggling with the sheer idea of having a neurological illness.

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 ashamed to tell anyone about it. Yet disease is a great educator, and part of that education revolves around ideas that you dismiss as artless or hokey. They are all true, disease whispers: the clanging truisms, the stodgy sentimentality. Life goes on. Live in the moment. Stay positive. The writer in me hesitates before typing these lines. The patient in me could not do without them.

In the year that my daughter has taken her first steps, the year she has mastered rudimentary balance, the pincer grip and the ability to put two words together, I have been learning, too. Clichés, truisms and much more besides. I have been learning how to understand what is going on in my own skull. I am still learning.

This article appears in the 19 June 2015 issue of the New Statesman, Mini Mao