In his new book, Robert Douglas-Fairhurst likens his diagnosis of multiple sclerosis in 2017 to the opening of a trapdoor on which he unfortunately happened to be standing “like Wile E Coyote” at the precise moment when the lever operating it was pulled. On that day, a neurologist briskly explained to him that his recent MRI scan had revealed the existence of lesions on his spine and brain that were almost certainly the result of MS, and in that moment – whoosh! – down he plummeted. “There was,” he writes, “a creak of wood, the sharp click of a sliding bolt, and then nothing but the sensation of rushing air.” His symptoms – the struggle to get out of a hot bath; the feeling, after a long walk, that his legs could no longer carry him – had hitherto been more bothersome than distressing or painful. But now he began to see them as part of a sinister jigsaw: a fiendish puzzle that would, he soon gathered, forever remain unsolvable.
Still, he wasn’t about to give up: then, or now. In his lovely, book-lined room in Magdalen College, Oxford – open a window, and you may hear the sound of a deer coughing in the mist – Douglas-Fairhurst, a fiftysomething professor of English whose studies of Lewis Carroll and Charles Dickens have won literary prizes, and who has acted as the historical consultant on, among other productions, the TV series Dickensian and the Enola Holmes films, gamely waves an ankle at me. “Feel my knee!” he instructs. “Go on! Feel it.”
Uh oh, I say, groping it tentatively. This is a bit #MeToo. But what’s this? There’s something… stiff beneath his jeans. “Yes, I’ve started wearing knee pads,” he says. “For when I fall over.” Has he fallen over a lot lately? “No, but it means that when I do, there’s less chance I’ll end up in A&E.” This sounds so worrying and grave – and yet, he is smiling. His MS has, you see, changed his relationship with his body in ways that are – unlikely as this may sound – good as well as bad. His legs, these days, are often obdurate. But better wilful legs (and knee pads) than some other things: “The less the body works, the more you appreciate any bit that still does. My eyes, for instance, have settled down in the last couple of years, which for me is hugely significant. When I ended up in hospital with eyes that weren’t focusing properly, that was very scary. I don’t want to be too Pollyanna about this, but it’s better to be grateful for what you can do than to pine for what you can’t.”
Douglas-Fairhurst has called the book he has written about his illness Metamorphosis: A Life in Pieces – a reference not only to the way his MS has transformed him physically, but a nod also to Franz Kafka’s novella of 1915, in which a salesman called Gregor Samsa wakes up one morning to find that overnight he has become a giant insect. In the days and weeks after his diagnosis, when things seemed frightening and bleak, Douglas-Fairhurst often thought of poor Gregor. Would his own fate be similar? (Though Samsa is at first cared for by his family, it isn’t long before he becomes a prisoner in his own bedroom, where eventually he dies.) Sometimes, it felt like it would.
MS is a fairly common illness, affecting around 100,000 people in England. But there are two kinds of the disease: relapsing remitting and primary progressive. Douglas-Fairhurst’s diagnosis was for the second kind, which is the more serious. Thanks to a faulty immune system response, the nerve cells of someone with MS are gradually stripped of their protective myelin sheaths, which means they can no longer carry instructions from the brain to the rest of the body without some of this information being lost along the way. The white lesions revealed by his MRI scan suggested it was likely his central nervous system had already suffered permanent damage. As he puts it in his book: “My body was dying like a coral reef.”
What was going to happen to him? And what, if anything, could be done to prevent it? His neurologist had nothing good to tell him. MS is unpredictable. Each patient’s disease is as unique as a set of fingerprints. He might go blind, or lose his voice, or be incontinent. He might one day need to use a wheelchair, or be unable to feed himself. His thoughts might become confused. No one could say for sure. As for treatments, though individual symptoms can to a degree be managed, the neurologist could offer no pill that would slow down the progress of the disease, beyond the possibly beneficial effect of taking high doses of vitamin D.
Was he shocked to hear all this? He was. But he was also preternaturally calm. “It wasn’t clear the disease definitely would get worse, or how quickly it would if it did,” he says, handing me a slice of homemade fruit cake. “While it was entirely possible that 20 years could go by and I wouldn’t notice any difference, it was also possible it could be the trigger for all kinds of disastrous things happening to my body. As it turned out, the second scenario was closer to the truth, but at the time it was difficult to be suitably terrified because I simply didn’t know what, exactly, I was scared of.”
After this conversation, he went home and “brewed” the news for a while. Only some days later did he tell his family, and his partner, M, to whom Metamorphosis is dedicated: “We don’t live together, so I had some breathing space.” MS, he observes, is almost as hard for those around the person who has it. “You don’t have any choice but to deal with it, but other people do: they can simply up sticks.” Was he worried M would do that? “Yes, I was.” But he didn’t. M, too, was sanguine about what might lie ahead – Douglas-Fairhurst carefully outlined a series of increasingly grim scenarios, beginning with whether M would be willing to cut his toenails for him – and he was also funny about it, ready to take the piss. “Thunderbirds are go!” he will shout, even now, as Robert lopsidedly crosses a room. “He’s the most extraordinary person,” says Douglas-Fairhurst. “He’s not the world’s most natural nurse, as he absolutely admits himself. But he is kind and practical and generous, and those are the things you need if you’re ill – and my book, in part, is a love letter to him.”
Everyone else, he told on Facebook. “In some ways that was just a klaxon call for sympathy. But in other ways it was a request to back off. The last thing you want is well-intentioned but unhelpful advice, when everyone becomes Google doctor.” It’s hard for people, isn’t it? To know what to say? “Yes. Often, they’re expressing love. But love isn’t always reciprocated.” Students, he says, tend to think of dons as aliens: “The fact that I was stumbling and slurring probably struck them as just another example of academic weirdness. Or maybe they thought I was drunk.” But he knows there are few better places in which to be ill than an Oxford college (he has been at Magdalen for 20 years). “It isn’t just a work environment, it’s a community. People are kind and respectful. They’re hands off, except when I fall over, when I very much want them to be hands on.”
With everyone in the picture, Douglas-Fairhurst proceeded to do what he has done ever since he was a child: he read furiously, hoping to make sense of the new world in which he found himself. Scanning his bookshelves, he found a volume he’d bought on the strength of its title alone. The Journal of a Disappointed Man is a memoir, first published in 1919, by the naturalist Bruce Cummings under the pseudonym WNP Barbellion. An account of its author’s experiences of what was then known as “disseminated sclerosis” – Cummings died the year it came out, aged just 30 – it had a powerful effect on Douglas-Fairhurst, one he describes compellingly in Metamorphosis. “Reading someone like him, who goes through a worse version of what I’m going through, is a form of homeopathy,” he says. “You introduce this element of trauma into your life, but at one remove, in a way you can control. It allows you a critical vantage point, enabling you to understand the illness from the inside and the outside simultaneously.”
But even as he read, and took solace in that reading, there was no ignoring the fact that his own disease was developing rapidly, symptoms that had previously been content to remain in the background now thrusting themselves wholeheartedly upon him. The electric shocks that ran up and down his spine if he bent his neck forward made him feel as if he was being Tasered at close quarters; in the mornings, his vision was blurred; his legs grew more unpredictable, and his falls more frequent. He experienced “bladder urgency”, a condition that affects up to 80% of MS patients; his voice began to grow faint. Most alarming of all, there were moments when he could not think, as if his brain “had been replaced with a lump of warm paste”. Words, for the first time in his life, failed him.
Scouring the internet in search of something – anything – that might slow its progress, one phrase kept coming up: autologous haematopoietic stem cell transplantation (AHSCT), a process that involves severely weakening the immune system with high-dose radiation and/or chemotherapy, after which the patient receives a transplant of his own stem cells (these are extracted before the chemotherapy, and stored in a freezer). Such treatment is complicated, expensive (about £30,000 on the NHS), and carries with it the risk of severe complications; some specialists regard it as “desperation haematology”. But recent clinical trials have been encouraging. AHSCT cannot repair existing damage to the brain and spinal cord, but up to 70% of patients with primary progressive MS who undergo it are able to halt the disease’s development. In essence, it is a way of rebooting the body’s faulty immune system, like a computer being turned on and off again.
Douglas-Fairhurst was lucky. While many patients have had to travel abroad (often to Mexico) to receive this radical treatment, he discovered that AHSCT trials were being conducted in London, for which, following tests, he turned out to be eligible. He was also, thanks to help from his college, able to pay for his treatment, which meant it could happen immediately. And so began his journey into a world of extreme isolation. After his transplant, he would need to remain in an antiseptic bubble until his body started to repair itself with the help of his new stem cells. No one would be able to enter his room without first disinfecting themselves in a decontamination area. Weak, vulnerable and permanently attached to a drip, he would be barrier nursed for a month at least.
The whole thing sounds to have been so gruelling and lonely: much more so than I’ve made it sound (you must read his book for the full horror show). How did he put himself through it? Was he full of dread? “Not exactly. Since then, one drug has been approved by Nice [the National Institute for Health and Care Excellence], albeit not a very effective one. But at the time, there were no drugs at all. I didn’t have any other option. I don’t know how to describe it… It was a combination of anxious anticipation and hope. I was excited, as you are if someone is dangling a lifeline, and you’re reaching for it.” I was struck by his stoicism. “Yes, I was surprised by that, too. In that environment you’re just an object to be filled with drugs, and drained, poked, prodded, moved around. You either struggle against that, or you relax into it, and it turned out that I was one of those who could relax into it. I think my irritation was used up by then; hospital was the culmination of my acceptance.”
He finally left hospital at Easter 2019. What’s eerie about this in retrospect (and anyone who reads his book, the first literary account of such a procedure, is bound to feel it) is the way that his isolation – a long pause attended by many masks and gowns – prefigured the pandemic, which would arrive only months later. He nods. “Yes, I’d had many months to prepare for the pandemic – and again, this is going to sound holier than thou, but I think it gave me more empathy for people when it began. I thought: I know what this is like. I’ve rehearsed this. It turns out I’m not a soloist, after all; there’s a whole chorus of people going through the same.”
His treatment was intended to reset his immune system. But it recalibrated so many other things besides: his relationships with other people, and with his surroundings. He has, he believes, become a kinder, more empathic person, and like the writer Dennis Potter, who famously thought, as he was dying of cancer, that the apple blossom outside his window was “the whitest, frothiest, blossomest blossom there could ever be”, he finds the world to be so much more vivid now. “When I came out of hospital there was this blooming, buzzing confusion that I write about, and I don’t think that’s ever gone away. I’m more sharply aware of everything. I’m reborn.” He laughs. “When I finally lose my legs, maybe I’ll lie in bed hating the world. I’ll probably be deeply bitter. But for now…”
Metamorphosis ends without telling us whether his treatment worked. Did it? Answering this question isn’t straightforward. “We’re used to measuring success by positives,” he says. “But if this treatment works, nothing changes. That’s all you want. For me, it’s a mixture. My voice is stronger, and my vision is better. But my walking is probably slightly worse. The key thing is my brain. It doesn’t feel like mush any more. I can reach for words, and grab hold of the ones I want.” He’s prepared for setbacks. No one can say what might lie ahead. He has bought himself a whizzy, state-of-the-art wheelchair, which may yet be deployed in the summer, heat being “kryptonite” for his MS. But his latest MRI scan revealed no new lesions. Three years on, he is now officially counted by his doctors as, yes, a success story. For the time being, Thunderbirds are still go.
Metamorphosis: A Life in Pieces by Robert Douglas-Fairhurst is published by Vintage (£18.99). To support the Guardian and Observer order your copy at guardianbookshop.com. Delivery charges may apply
