My symptoms seemed embarrassingly trivial – then I was diagnosed with MS at 49

It was a day like any other until the trapdoor opened. We all have trapdoors in our lives. Sometimes we hear the hollow sound of our feet treading on the wood and jump off just in time: we defuse the argument with a joke; we swerve to prevent the traffic accident that would have left our car crumpled up like a giant tin can. But sometimes we are unlucky enough to be on the trapdoor when the lever is pulled. We remain frozen in mid-air for a fraction of a second, like Wile E Coyote running off a cliff, and then we plummet.

My own trapdoor was hidden in the consulting room of an Oxford neurologist. Time: an ordinary morning in October 2017. Place: an ordinary room full of anonymous office furniture and the musty smell of old potpourri. Through the window I could glimpse a flat, grey sky and a few dead leaves scurrying for cover. The neurologist had been recommended to me as an expert in her field, which meant that it would be all the more reassuring when she told me I had nothing to worry about. False alarm, glad to set your mind at rest, good luck with your next book, and so on.

I sat down opposite her as she frowned at some notes, and gave her an encouraging smile. After the usual thanks-for-coming, thanks-for-seeing-me pleasantries she paused for a moment, as if taking the mental equivalent of a deep breath, and then looked me in the eye. ‘I’m going to come right out with it,’ she said. ‘I think you have multiple sclerosis.’

There was a creak of wood, the sharp click of a sliding bolt, and then nothing but the sensation of rushing air.

Rewind a couple of months. The reason I’d originally found myself sitting in a hospital consulting room had seemed embarrassingly trivial at the time. After going for a long walk in August, on the way home I’d noticed that my legs had started to behave rather oddly. They felt heavy and badly coordinated, and by the time I reached my front door I was shuffling along like an old man in carpet slippers. The next day I made an appointment with my GP, assuming that he’d diagnose something straightforward like an iron deficiency, or maybe just the slow creep of middle age. Instead, a flicker of concern passed across his face. ‘Hmmm,’ he said, and referred me to a local neurologist. A week later she put me through a set of standard tests, all of which I passed with flying colours. Looking a bit puzzled, she suggested I leave her office and walk around for half an hour. When I returned it was obvious that the old man in carpet slippers had once again taken over the lower half of my body. ‘Hmmm,’ she said.

The next stage was a scan in an MRI (magnetic resonance imaging) scanner: a large plastic tube that looked a bit like a space-age tanning booth, in which I was instructed to remain absolutely still for half an hour while hidden machinery rhythmically banged and whirred around me, using strong magnetic fields and radio waves to produce images in the form of thin slices taken through my brain and spine. Then I did it again, this time after a contrast dye had been injected into my bloodstream to reveal any hidden areas of inflammation. It was a boring but painless hour or so, and for most of it I felt rather as I imagined a baby might in the womb, assuming its mother enjoyed listening to techno music at ear-splitting volume. An interesting experience, I reflected, but surely a waste of everybody’s time.

Back in the neurologist’s office, I was given the results of my scans. My brain and spine were speckled with little white patches known as lesions – the scans looked as if someone had secretly been stubbing out cigarettes inside me  –  which were almost certainly the result of multiple sclerosis, or MS for short. In effect, my body was attacking itself. A faulty immune-system response meant that my nerve cells were selectively being stripped of their protective myelin sheaths, preventing them from carrying instructions from my brain to the rest of my body without some of this information being lost along the way. Even though on the outside nothing appeared to be wrong, inside my nerves were fraying like electrical wiring being gnawed on by a family of mice.

She explained that MS was a surprisingly common disease, thought to affect around 100,000 people in England and 2.5 million people worldwide. The causes for it were still unknown, although common risk factors ranged from the genetic (your chances of developing MS increase significantly if you are biologically female, or if there is a history of autoimmune disorders in your family) to the geographical (there is a rough correlation between disease activity and lower levels of sunlight, with the risks gradually increasing the further north you live).

She went on to explain that there are two main types of MS for newly diagnosed patients: relapsing remitting and primary progressive. The first is potentially less serious, because although it can be crippling, as localised areas of the brain and spine become inflamed and cause the body’s usual functions to go haywire, these attacks are also temporary, and regular use of one of the disease-modifying drugs that are available can lead to periods of remission lasting months or even years. Unfortunately, I had the second type. Although my lesions did not currently show any signs of inflammation, it was likely that my central nervous system had already suffered a good deal of permanent damage, and new swellings and scars could reveal themselves at any time. My body was like a dying coral reef.

What she couldn’t tell me was how quickly things would deteriorate. That’s because the course of each patient’s disease is as unique as a set of fingerprints. In effect, it is a disease of ‘perhaps’. Perhaps I would become incontinent or unable to feed myself. Perhaps I would become blind or lose my ability to speak. Perhaps I would soon be unable to walk without the assistance of a stick, and would then progress to a wheelchair, and finally to a bed, where I would need help with everything from getting dressed to brushing my teeth. Perhaps my mental processes would become sluggish and confused. Or perhaps not. I thanked her for her honesty, before leaving her office with the sensation that I’d just been handed something that was halfway between a life sentence and a death sentence.

The test results arrived a couple of weeks later: a three-page letter sent by the neurologist to my GP outlining what she had discovered. Some of the language was fairly opaque to anyone without medical training but the overall conclusion was clear enough: ‘multiple sclerosis’.

This was far more than just an ordinary letter. It was a passport to another country. ‘Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick’, writes Susan Sontag in her book Illness as Metaphor. ‘Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.’

Confirmation that I had now crossed this border came the following month. I had been invited to a drinks party in Balliol College, about a mile away from my house, and I set off to walk there. After a few hundred yards my legs started to feel as if they were slowly filling up with concrete, and by the time I was close to my destination I no longer resembled an old man engaged in a carpet-slipper shuffle. Now I looked more like a deep-sea diver clumping along the ocean bed in weighted boots. Then it happened. Crossing the road, I tried to lift my left leg to reach the pavement, and it simply refused to respond. It was as if I were a puppet and someone had cut one of my strings. Instead of stepping over the kerb, I stubbed my foot heavily against it and fell flat on my face.

The next thing I knew I was lying on my back, with my arms and legs frantically waving in the air as I tried to haul myself upright, while passers-by averted their gaze and awkwardly stepped around me. I could feel my face becoming hot and red, and although that was partly down to embarrassment it was also anger. I was angry with my legs for letting the rest of me down. I was angry with the kerb for getting in the way and I was angry that someone who spent every day working with words had once again found himself being abandoned by them.

Luckily there wasn’t any need to press the panic button just yet. After that first fall, my symptoms had been very mild. Perhaps I’d been too gloomy in assuming the worst, I decided. Perhaps it would all be fine. The kingdom of the sick was full of forking paths leading in any number of different directions.

It wasn’t long before I realised that my body wanted to get to the least attractive destination on the map, and as quickly as possible. The electric shocks that ran up and down my spine if I bent my neck forward now felt as if I was being tasered by someone standing just behind me. Above all, my legs had started to misbehave in far more unpredictable ways. I tripped and fell in the street again, this time after I had only walked a couple of hundred yards. I fell down the stairs. I fell over my own feet. Every time I got out of bed, the world I had previously known appeared to have been replaced by a carnival funhouse, in which the floors moved and unexpected obstacles could emerge from nowhere. As bruise followed bruise, my arms and legs started to look as if someone had been using them to try out a dozen different paint samples in earthy shades of green, blue-grey and brown.

Then a brand-new symptom decided to introduce itself. One evening I was returning to Oxford from London. The coach stop was only 10 minutes from my house, so when I realised that I needed a pee shortly after I started to walk home I didn’t think too much about it. We’ve all been in a situation where we claim ‘I’m bursting!’ but secretly know that we can hold on until we find a toilet. Not this time. Within a couple of minutes, I had begun to run – or, more accurately, lurch like a panicked giraffe – down the street, and by the time I reached home I was starting to leak. A few seconds later I found myself peeing into a bush just outside my front door, while an elderly neighbour walked past tutting and her dog looked back at me with a new-found respect.

So ended my embarrassing introduction to what doctors refer to as ‘bladder urgency’, a problem that affects up to 80 per cent of MS patients, as control over the tiny muscles that surround the bladder is gradually weakened, and an overwhelming urge to pee can suddenly arise whether or not the bladder is actually full. Having to stand in my front garden self-watering the plants didn’t feel like ‘urgency’. It felt like the start of an emergency.

As I continued to read the latest medical research, looking for something – anything – that might help to slow down the rate at which my disease was progressing, one phrase kept coming up: autologous haematopoietic stem cell transplantation. It was something of a tongue-twister, but luckily the science behind it wasn’t too complicated to understand. Stem cells are the body’s raw materials, able to regenerate or replenish other cells that are lost through injury, disease or natural causes. They are the basic building blocks of life.

The unique power that stem cells have to heal existing damage in the body means that researchers have long recognised their potential to promote the repair of diseased or defective organs. Haematopoietic stem cells have been used to treat conditions such as leukaemia and lymphoma, in a process that involves severely weakening the patient’s immune and blood system through radiation or chemotherapy, and then transplanting stem cells derived from either the patient themselves or a matched donor’s bone marrow or peripheral blood. This is known as haematopoietic stem cell transplantation (HSCT).

Autologous HSCT (aHSCT) begins with the extraction of the patient’s own stem cells and their storage in a freezer. The patient is then treated with high-dose chemotherapy and/or radiotherapy, a process designed to destroy cancerous cells that also removes the ability of the patient’s bone marrow to grow healthy new blood cells. Finally, the stored stem cells are thawed out and reintroduced into the patient’s bloodstream, where over time they replace the old tissue and allow the body to resume normal blood cell production. In effect, the body is given the help it needs to start repairing itself.

Then I discovered that aHSCT trials were being done in London. After a barrage of tests I received the news I had been hoping for: I had provisionally been accepted for treatment. There followed an appointment with the consultant haematologist who ran the transplants in London, and would be directly responsible for my care. Smiling broadly, he told me that I would qualify for treatment on the NHS as part of the ongoing trial. Then the smile flickered a little as he went on to explain that I might need to wait several months before a bed became available. ‘It will take a little time,’ he admitted, avoiding the fact that the one thing someone with a degenerative disease doesn’t have is time. He offered me an alternative: I could have the treatment almost immediately in a private hospital if I could raise the money. He told me the cost and I laughed politely: it was roughly the same as a terraced house in some parts of the country. Only when he didn’t return my laugh did I realise he was serious. For a few seconds I wrestled with my conscience – could I really justify spending that much money on myself? – and then I started to do the sums in my head.

By now I had already visited enough hospitals to know that each one had its own atmosphere and generated its own mood. Some hummed with energy, while others were more subdued; there were hospitals that were eager and optimistic, and those that appeared to have turned their faces to the wall. My conversation with the consultant haematologist had taken place in the brightest and shiniest hospital I had encountered so far and it smelled of antiseptic and fresh coffee and hope. Everywhere nurses bustled and machines pinged; everything looked reassuringly clean and new. If I was going to be broken down and rebuilt, this seemed like as good a place as any to have it done.

Until now my own physical decline hadn’t been matched by a corresponding dip in mood. As the end of summer approached, that began to change. According to some studies, up to a quarter of all MS patients suffer from depression to some degree, although it can be hard to determine whether this is primarily a psychological side effect caused by the everyday strain of living with the disease, or a neurological symptom caused by blank spots opening up in the brain. Possibly it is a bit of both. On the outside I tried to remain upbeat, but on the inside things were starting to turn flat and grey. I hadn’t yet contacted the Dignitas clinic, but increasingly it felt as if my mind had already taken the decision to start shutting down. This was suicide by stealth.

After Christmas, as I shuttled between different London hospitals for a battery of tests, it became increasingly hard for me to keep track of events. Finally came the part of the process known as mobilisation.

This began with a first dose of chemotherapy, which meant spending a day being hooked up to a machine that gradually dripped a bag of innocent-looking clear liquid into my veins. It was cyclophosphamide, a highly toxic drug that would kill my blood cells and encourage my stem cells to migrate from my bone marrow into my bloodstream to replace the lost cells.

There followed several days of anti-sickness medication, alongside daily injections of another drug known as G-CSF (granulocyte-colony stimulating factor) to encourage my bone marrow to produce more stem cells and release them into my bloodstream. Soon the early effects of chemotherapy began to reveal themselves. My scalp grew prickly and itchy, and one morning in the shower I noticed a few stray wisps of hair clogging up the plughole. An hour later I gave my head a good scratch, and this time a thick clump came away in my hand. By noon I was watching in the mirror as my hairdresser used some electric clippers to shave my head until there was nothing left but a light covering of soft blond fuzz. I looked simultaneously very young and very old, like a newborn chick with a lot on his mind.

The day of my stem cell collection – also known as harvesting – came towards the end of January. The only part that didn’t go according to plan involved my groin. ‘You have very fine veins,’ the nurse who would be overseeing the collection told me as she took a blood sample. ‘Thank you,’ I replied. She smiled pityingly at me. ‘I don’t think you understand. The veins in your arms are too thin for the needles we’ll be using.’ She showed me something you might use to knit a jumper. ‘We’ll have to go in through your groin instead.’ I gulped and stripped down to my boxer shorts. Luckily she gave me an injection of anaesthetic, so I didn’t feel too much as both needles were inserted into the top of my left thigh. In fact, the only awkward moment came when I glanced at the machine that would be spinning my peripheral blood. It was an anonymous lump of grey metal that looked like a cross between a washing machine and a giant food mixer, but someone in the hospital with a sense of humour had decided to give it a name. A blue label stuck on its front announced that for the next few hours my blood was going to be sucked out of my groin and pumped back into it again by Aphrodite, the Greek goddess of love.

Finally, Aphrodite stopped whirring and ticking, the needles were removed, and my bag of bright pink goo was taken away to be analysed and frozen. After a brief final wait, my nurse came back with the good news that although they had only needed to collect around four million stem cells to make the transplant viable, in fact they had managed to collect nearly 15 million. ‘Well done,’ she said.

A few weeks after harvest day, I wheeled my suitcase across the polished floor of the hospital where my stem cell transplant would take place. Once some more chemotherapy had battered my immune system into submission, I would need to stay in an antiseptic bubble until my body had started to repair itself with the help of my new stem cells. A smaller lobby area served as a decontamination chamber, and each time a nurse needed to check on me, or someone brought in a tray of food, they had to disinfect themselves before they were allowed to enter my room.

February 25, 2019. After a further two days of intensive treatment (more viciously effective drugs, more technicolour dreams, more pee than I thought possible for one body to produce), followed by a rest day, today it was finally time for my stem cells to be returned.

A plastic bag half filled with something resembling a frozen strawberry daiquiri was placed in a tank of lukewarm water and slowly, carefully defrosted. Next the bag was hooked on to my drugs stand and, working fast, two nurses ensured that the contents were slowly, carefully dripped into my PICC line. It felt cold as it entered my bloodstream, and occasionally I shivered. After an hour the bag was nearly empty, and one of the nurses gently squeezed it like a giant tube of toothpaste to ensure that every last drop was used. Soon it was all over. The bag was removed, my PICC line was flushed with saline solution, and the nurses left, having completed a piece of medical choreography that was performed so slickly I was nearly speechless with admiration. Nearly but not quite: as they departed, I gave them the most heartfelt thank you of my life. Finally, my body had a chance to forget its earlier confused attempts to damage itself. It might even start to repair itself.

Later I lay in bed watching some specks of dust as they drifted through the air, rising and falling in the invisible currents circulating around my room. Suddenly it occurred to me that the room was so clean they were probably tiny flakes of my own dead skin dancing in the sunlight.

It’s a crisp autumn morning, nearly four years since my initial diagnosis, and the sun is just starting to creep through my bedroom window. As usual, I don’t get up right away. Instead, I lie there for a few more minutes, staring at the ceiling as I work my way through a daily mental checklist:

• Eyesight: still a bit fuzzy around the edges, but it should sharpen up in a few minutes

• Brain: ditto

• Bladder: no alarms are going off just yet, but I will need to remain in a cat-like state of readiness all day

• Legs: I can feel my toes, but this early in the morning everything from the hips down is stubbornly refusing to do what I want it to; when I stumble downstairs to make a cup of tea in a few minutes, I will look like Frankenstein’s monster dressed in a bathrobe

• Mood: tantalisingly close to hitting that elusive sweet spot between optimism (the hope that things can always get better) and realism (the understanding that I should just be grateful if they don’t get any worse)

When I was younger, the idea that my body wouldn’t immediately do what I wanted it to would have been simply inconceivable. Now I realise that this wasn’t just the thoughtlessness of youth. It was the thoughtlessness of health.

Life is very different now. Always there is the potential for something new to go wrong, or something old to deteriorate even further. Each morning’s checklist is like holding a roll call for a team of volunteers who could choose to stop working at any moment. And whenever I discover that they’re still loyally hanging around, doing their jobs as best they can, my main feeling isn’t relief. It’s gratitude: further proof that there’s nothing like the prospect of having something taken away to make you appreciate it properly, even if it’s become a bit battered and broken over the years.

The idea that someone who has been forced to adjust nearly every aspect of their lives to suit the demands of their disease should be grateful may sound strange. Yet I cannot help thinking that for all I have lost in recent years, there are also some things I have gained, such as a better sense of proportion, and maybe even a better sense of humour. (Perhaps deep down they are the same thing.) Every day feels like a new adventure in the world of the possible.

Today I decide to put this idea to the test by going for a walk to the top of a nearby hill, from where you can see one of the most famous views of Oxford: the lead domes and thick fingers of honey-coloured stone that rise out of the morning mist like an architectural dream. I’m not entirely confident that I’ll make it there and back without my legs buckling underneath me, but there’s only one way to find out. I open my front door and step into the bright morning sunshine.

Metamorphosis: A Life in Pieces, by Robert Douglas-Fairhurst, is out on February 16 (£18.99, Jonathan Cape, Vintage). Pre-order for £16.99 at books.telegraph.co.uk or call 0844-871 1514