After an hour of empty-headed travel back to the coast, I sensed that my confusion had lifted. And I sensed, with a knotting in the stomach, that yet again some of that confusion was self-imposed. I had given up in the face of a difficult challenge, and maybe the challenge itself was, at least in part, yet another phantom.
No. This will not do, I thought. As I headed back to Brighton I texted Sarah, saying that I had to come home early but I was fine. Then, as I waited for a reply, I made a serious effort to go over what had happened. My confusion had felt so real, so complete, and yet did MS create confusions this deep and this all-encompassing, and did they emerge so suddenly?
And MS confusion suddenly seemed like a terribly broad term. Apart from my experience back with the Ikea bed, a lot of my MS fog so far had left me kind of dithery rather than completely emptied and bewildered. What I had just encountered was something far more comprehensive—something that I felt I would be reluctant to talk to a neurologist about, as it seemed tinged not just with MS, but with my hysterical, indulgent, useless reaction to it. And yet I did not feel hysterical anymore, and had not felt so for weeks before this incident.
Might I be able to unpick this a little?
I went back to my arrival at Blackfriars. I have often drifted off on trains—which hardly requires the assistance of a neurological disease—and sometimes upon returning to the moment as a train arrives at a station and the doors hiss open, I have realized that my plans have floated off somewhere and cannot easily be regained. I remembered that from Blackfriars: the sense of suddenly being without a plan, and I remembered too that in MS it is acknowledged that the complex human stuff of making plans, of making decisions, can become trickier.
And I knew, as I had looked at the Tube map, that I probably could have pushed through the fog a little here—if only I had possessed the energy and the confidence to do so.
Lack of focus, muddled planning, and an absence of the requisite belief to pull it off. This suddenly sounded a lot like MS to me. And yet this meant I was left with two conflicting experiences: I had worked myself back to an understanding that the confusion I had felt wasn’t actually very deep, and was mainly about my ability to focus, to root myself back in a moment I had briefly lost touch with. But I also had a vivid, panoramic sense of what this was actually like to live through, the coherence of the world briefly fragmented, with few of the pieces fitting together properly.
Maybe there was truth here. The truth that the mechanism and the effect of the mechanism can be wildly different to comprehend. And maybe they should be. Unstitching a neurological event can be a quiet business, calling for calm and clarity and precision. But I do not live with precision, and I do not always experience life with calm and with clarity.
I knew, whatever happened with Lemtrada, that I would have to learn to live with this, with the knowledge that, on rare occasions, there would be a gap between my attempts to understand something and my experience of it.
Maybe, over time, simply understanding that the gap was there would help to close it.
The Viking Gene, the Equator, and Vitamin D: The hunt for the possible causes of MS
One recent morning Leon woke me with the cheerful announcement that her fingers were tingling. Panic descended immediately. Thankfully, she followed this by explaining that she’d been playing a game for the last few minutes. She’d been testing how long she could sit on her hands before they started hurting.
As I calmed down, it dawned on me that I’d been so quick to assume the worst because this was one of those things I had avoided thinking about. Maybe now was a good time to confront it.
What are Leon’s chances of inheriting MS from me? It is widely agreed that a person is at greater risk of developing MS if a family member has it. In the UK, roughly one person in 600 has MS. The MS Trust cites a recent study that suggests that the lifetime risk for a person who has a parent with MS is one in sixty-seven. (This rises to one in thirty-seven if a brother or sister has MS, and one in five if an identical twin has the disease.) To add context, however, the Trust reminds us that one in twenty people over the age of sixty-five will develop dementia, and one in three of us will develop some form of cancer. There are over one hundred genes that appear linked to a heightened susceptibility to MS, but the fact remains that we are talking about susceptibility. Most people who develop MS do not have a family history of the disease, and while it has a complex set of genetic components, it is not classed as an inherited condition.
While I tend toward the belief that Leon’s chances of getting MS are not catastrophically elevated by my own diagnosis, I appreciate that the whole subject is muddled. It is muddled by my worries about what my diagnosis means for her regardless of her own health, and it is muddled by the lingering uncertainty as to what actually causes MS in the first place.
There have been many hypotheses. Charcot, who acknowledged he did not know the cause of MS, spoke vaguely of problems of a “moral order”: grief, a loss of social standing, and the attendant stresses. His notions do not strike me as particularly scientific. Others over the last century and a half have added their own theories: MS might be caused by overworking, by too much thinking, by certain sexual habits—they never said which ones—or by environmental toxins. Some theories have gained traction, such as the idea that trauma or prolonged stress serves as a trigger for a disease that is already present, but dormant.
The pronounced gender imbalance of MS was noticed early on—Charcot spotted that he had more female than male patients with MS in the nineteenth century, and today it is accepted that relapsing-remitting MS is at least two or three times more common among women, suggesting that hormones may play a role.
Equally, by the beginning of the twentieth century, many researchers were starting to look at the unusual geographical distribution of the condition. It is striking how much more common MS becomes the further you get from the equator. To take the most extreme example, across the Orkney Islands one out of every 170 women is affected by MS—an enormously high incidence.
The Orkney numbers are rising too. According to a Guardian article published in 2012, when Orkney and the Shetlands were surveyed in the mid-1980s they had a rate of 190 cases per 100,000 people. Now in Orkney alone, it’s 402 per 100,000.
In recent years, the geographical shape of MS has put vitamin D firmly in the frame, since vitamin D is manufactured by the skin upon exposure to sunlight, and MS seems to thrive in colder, grayer environments. Many people diagnosed with MS, myself included, are found to have low levels of vitamin D when they present with initial symptoms.
Exposure to infection is also considered a potential causal factor, although the focus has moved away from the idea that MS is caused by a specific infection toward the notion that a range of infections might trigger a process that results in MS. Various viruses have been proposed as likely candidates over the last hundred years or more; the Epstein–Barr virus, which is extremely common, is now the subject of a lot of research in this respect.
Ultimately, the current thinking holds that MS is caused by a combination of factors, which would explain why its origins have been so hard to pin down. There are the genetic components to consider, along with the gender bias, along with vitamin D deficiency and exposure to an infection. And then there is a second tier of potential risk factors such as smoking and a form of vascular deformity that is sometimes present in people with MS.
Separating many of these elements remains enormously tricky, as the Orkney example illustrates. Some see the high incidence of MS in places like Orkney as an indicator that the disease is caused by what’s often caricatured as a “Viking gene,” that it is, in part, the poisoned wake left by marauders from the north wherever they landed. Outside the Orkneys, other hot spots include Nova Scotia, Alberta, and Aberdeen. East Kent, where I grew up, also has a relatively high number of cases compared to the average.
So is this proof of a strong genetic component—and a point of origin—or is it simply more
proof of the role that vitamin D plays in the disease? Research published in 2016 found that MS symptoms appeared on average ten months earlier for every ten-degree increase in latitude. But there’s an additional wrinkle: people born in an area with a higher than average risk of MS who then move to a part of the world with a lower risk assume the risk of their new area, but only if they have made the move before they reach the age of fifteen. (I was born in California, which is a low-risk area, but moved to Kent, a relatively high-risk area, before I started school.)
The search for a more complete understanding of the causes of MS is ongoing, as is the search for a potential cure. I am not expecting to see a cure or a solution to the riddle of why MS chooses one person and not another any time soon.
That said, I am eternally grateful that, when I look at Leon and fret that I may pass my illness on to her, I know a handful of things we can do right now to try and keep her safe. I can start by making sure she gets plenty of sunlight.
I still worry—I will always worry. But I do not feel entirely powerless.
8.
Inside the Tent
Sunday
Sarah bought Leon a tent, a cheerful arrangement of thin turquoise fabric, dotted with strawberries and ice creams. Round and jaunty, it has a bendy frame inside that leaves the whole thing rigid but slightly tipsy, battered by strange winds. “It’s a circus tent,” Sarah explains to me, but Leon and I know that it’s an explorer’s tent. We set it up in her nursery where, surrounded by the toys she has only recently started to truly play with, it feels like a base camp: a first foothold on proper childhood.
Yesterday, I said good-bye to my endlessly indulgent employer and left the office to begin just over a month of sick leave—the hospital stay and then a long period of house rest while my immune system recovers. My last few features have been filed; I have achieved Mailbox Zero. This afternoon I am going into hospital for a week. For the first time in years I am not wearing a belt with my cord jeans, and I have no coins or keys in my pockets. “It feels like I’m going to prison,” I tell Sarah as I put my things in a cupboard. “You’re allowed to wear a belt in hospital,” Sarah replies, but she knows that I’m not listening, that I have given into this fantasy of leaving worldly things, like belts and keys, behind.
Through sheer coincidence, I am starting a fresh notebook for my diary today. (My first note reads “Saturday,” which I immediately have to cross out because it is Sunday.) I am clearly flustered. I am about to get in the car with Sarah and Dad, but first I must say good-bye to Leon.
I find her in the tent, addressing a mixed group of dolls and teddy bears. Although it’s early spring, it’s hot out and the sun is shining. Everything inside the tent is tinted with a gentle turquoise light. Leon’s happy to see me; she wants me to play with her and her odd friends. She is busy assigning roles by the time she notices that I’m crying. When she sees this, she doesn’t start to cry herself. She withdraws, leaning back into her toys and refusing to meet my gaze. This is her latest means of reacting to a world that is not behaving: she will not engage. I back away, and minutes later I clumsily kiss her ear as she is carried past me, head down, to her grandparents’ car. She is going for a trip to the park.
On our way to the hospital, I use the last of my 3G signal to google a rash. Sarah and I have been over the dangers associated with this treatment a few times, but not as many times, she admits, as she has expected us to. A vanishingly small number of people, we have discovered, have deadly complications from the infusion itself. Then there’s the thyroid disorder, the bleeding, the renal problems, each one more serious, and less likely, than the last. At the gentler end of the scale is a rash I have only just learned about. The rash is almost a certainty. It’s the rash I’m looking up now, so that I’ll recognize it and won’t freak out when it finally appears.
The rash is the most common side effect of Lemtrada. Every online diary I have read so far has mentioned it. There’s a 90 percent chance of it showing up. On the second day, or the third, the body reacts to the treatment, and this reaction starts to stain the skin red, archipelagos flaring up on the chest and arms, spreading along invisible fault lines, islands growing into continents that linger angrily before retreating. A hidden world blooms briefly, and then fades. A cartographic rash is the medical term, as I remember it. Close enough, Sarah tells me in the car. It’s actually called a geographic rash, the body’s classic allergic response to an invader.
Whatever it’s called, on the screen of my phone these things have a belligerent prettiness. Nameless lands, separated by vast alien seas. Continents spreading across limbs.
The itching drives you mad, apparently, but all of that is secondary to me. The body will become a map. This is something I have understood for some time: aging, illness, injury, the landmarks of life are noted down. The body will become a map.
On a brief trip to the ward a few days ago, I clearly caught the place at a good moment: golden bloom through the open windows, a group of women cross-legged on their beds, chatting and reading magazines. Lots of sportswear, as if everyone were taking a moment out on their way to the gym. I am introduced to somebody: Justine is having her third dose of Lemtrada later in the day. No rash yet, but it’s been an easy run so far. She seems cheery in a way that makes me suspect she is always cheery. Everyone around her seems very content. People in the ward chat about the early spring, the animals in their garden that did not find the time to hibernate this winter. Illness seems a long way off. I walk away happy and realize that I have just broken a rule—a stupid rule that I have always known was stupid. I have properly met my first fellow MS patient. It was fine. It was helpful. I am incredibly grateful, in fact.
Today, however, the sun has already disappeared by the time I arrive. I worry the tone is set at the front door: as I buzz in, I am almost flattened by a huge man in mint hospital pajamas, electrodes running along his bald head like braids. He is making a break for freedom, body frantic but an unengaged look in his eyes, as if the conscious part of him is sitting far back in its seat and waiting to see how this particular adventure transpires.
In the half-light of the ward itself I can see the various shapes of old gray figures, one leaning over a dinner tray, another propped in a chair. For now I ignore them all as I stow belongings and lie back on my bed, alternating between frowning at the open pages of an unread book and frowning at the soap dispenser that I am situated opposite. Reminders to wash your hands are tacked up everywhere. I read the signs in front of me over and over again. I will not look around.
Today, without the bloom and the golden light, without Justine and her gathered friends, this is very clearly a neurology ward. Fiercely blinkered, I am left to reflect, unkindly, on the fact that neurological disease inevitably does something to the voice. It gives each of the presences nearby a softened, gummy, early morning voice. I think of splayed toothbrush heads, blunted pencils. Familiar stuff that has been worn down.
Sometime in the night they put a cannula in my arm, a needle with plastic mosquito wings, looking as if a small aircraft has crash-landed, nose-first, in my skin. I stare at the valve of the cannula and feel its smooth edges. Sleepily, I watch a thread of bright red blood trapped within the line, rising and falling as I tilt my arm, like the core of an old thermometer. I have no idea how this small machine operates and yet that doesn’t seem to bother me as it should. If I have a talent for illness, it is a talent for lying back stoically in the presence of great unquestioned assistance.
The cannula is surrounded by medical tape on which a nurse has neatly written the date. She flushes it through with saline solution, a chill that insinuates its way up the arm, briefly revealing secret causeways in a manner that MS has already prepared me for. “Can you feel that?” she whispers, close in the darkness. “In your throat? Some people can feel it at the back of the throat.”
I move my tongue around. Nothing. The last cannula I saw was mangled and broken-backed, put into Sarah halfway through Leon�
��s high-speed labor, awaiting an epidural that never came, because there was no time for it. That cannula wobbled around and then fell out, and in the thrill of the moment we never really thought about what had happened to it. I forgot it entirely until I unwrapped it at home a week later, a Christmas ornament protected by one of my old shirts.
At night, the ward becomes frightening. A neurological ward with neurological shadows, gray and coughing in the darkness. Nothing good will come of this, I think, as I go to sleep. I actually see that sentence in my head, made visible out of sheer bitterness. I am a grumpy character in a comic strip.
I had hopes for this visit that went beyond MS therapies. Now I cannot put these hopes into words. Instead I think: Tomorrow, if I am well enough, I will be poisoned. And I will learn nothing.
Monday
I awake in the morning and find that fear has retreated. Is this resignation? Now I just want to get through the week.
I withdraw, as I have always known I would, into cold politeness. I am cheerful and brisk as blood pressure and pulse are measured, as I receive a Morse code transmission of pills, this dash for the stomach lining, this dot for anti-spasticity. Around ten, a pump is wheeled up to me, a wedge of scuffed gray plastic on a metal stand, and a clear drip is attached to the cannula in my wrist: antihistamines, which make me wonderfully drowsy and woozy. I stare at my fingers as the next drip is attached. This one has steroids that I’m warned will fill my mouth with the taste of metal. They do. It’s always a relief when a hospital prediction comes true.
Finally, the chemotherapy itself is delivered. It is photosensitive, so it has to hide within a sinister black bag. There’s an aspect of crow as it finds its perch on top of the pump. It is a charismatic presence.
I watch the fluid dripping slowly through its pipework toward me. I tell myself I should be alert for any change in how I am feeling, but although it’s only eleven in the morning I’ve had a full day of chemicals by this point, and I am suddenly so incredibly tired.
The Inward Empire Page 22