A few weeks after I was diagnosed with multiple sclerosis, I made a pact with dying. I wrote draft suicide notes and planned my ‘exit’; not because I’d lost a chunk of my physical usefulness – most days, I can’t walk more than 200 metres and can’t use my right hand for more than a few hours – but because it turns out I’m the worst kind of candidate for an illness like MS.
I thought I was invincible. I’d never needed anybody’s help, hadn’t needed somebody to carry my suitcase down the stairs, or take out the bins. I didn’t bind well to the idea of dependency, to walking sticks and stairlifts. So I made plans: when it looked like a wheelchair might be wanted, I’d pay my debts, write a will and some letters, find a home for my cat, take what was left of my cash and book into the Ritz in New York for a couple of weeks.
I’d have a nice time and live out the kind of fantasy I’d had when I was a kid living in Ballymun, Dublin’s pissy, high-rise council estate. I’d fly first class, wear a chic suit, the masculine kind, pinstriped, with tall black boots (if I could walk at all). I’d eat fancy food and smoke in the hotel room, find a casino and play a few high-stakes poker tournaments, take a helicopter ride over the Hudson, rent an MGB convertible and then, when all the fun was done, I’d get into the king-size bed and do what’s needed with an ‘Exit Bag’ (a plastic bag with a drawstring filled with an inert gas, such as helium or nitrogen).
That was 2008, nearly four years ago, and I’ve mostly got used to my cut-in-half life. But sometimes I still wake – when it’s neither dark nor day – my chest covered in sweat, and words like these beating at the walls of me: ‘I’m on the way out. I don’t want to be on the way out,’ and, in the trap and trip of the weak hours, it’s as though my body knows more than I do. On 4 June 2008, the day a neurologist told me I have MS, I wasn’t at all sure what he meant. I’d seen some public service announcements on Australian TV which featured people in wheelchairs; people with spitty speech impairments, water-clogged mouths, curled hands with sharp, pointed bones. So, I knew that MS could cut your legs off, put you in a wheelchair, but not much else.
The neurologist showed me the MRI scan and the lesions in my brain; the scars, the permanent neuronal damage which means I’ve got spasticity and weakness in my right foot, and my right hand (my writing hand).
‘On average,’ the neurologist said, ‘it’s at least ten to fifteen years before you need a wheelchair.’
Signs of Trouble
In June 2007 I moved from Rome to Manchester with three suitcases stuffed with books. My first semester at the University of Manchester began in September. I walked to a cafe in the mornings, wrote for five or six hours until late afternoon, and took rock-climbing lessons with one of my MA students. There was nothing wrong with my body.
In December, I went to Paris for Christmas and when I left my hotel room to walk along the Seine, my right leg stopped working. After ten minutes or so my leg turned to wood and stayed that way for about half an hour. The next day the same thing happened, and the day after that and, on the third day, I caught a taxi back to the hotel. I couldn’t walk more than a mile.
I went back to Manchester, back to my half-furnished terraced house, and my kittenish black cat. The weird weakness wasn’t going away, but for about two weeks I ignored it. I could live without walking, I’d make adjustments, and I was sure the problem was temporary.
I started using taxis. I caught them everywhere, and soon the taxi drivers in Chorlton got to know me. When I booked taxis to go on short journeys, I told the driver I’d had a rock-climbing accident, and couldn’t walk, not even two blocks. I took taxis to the library, a £3 fare, and gave the driver £6. I called taxis to take me round the corner to the newsagent’s to get milk, a £1.90 fare, and gave the driver £5.
‘Is your leg not better yet?’ asked one of the drivers.
‘I need an operation. I might have to wait a while.’
I felt ashamed about the short fares (my father was once a taxi driver), so I rang the local cab company’s head office, and told the girl I needed regular taxis for short distances. I told her about my rock-climbing injury and, as I told the lie, I imagined the accident vividly. I was at an indoor rock-climbing centre, and I’d fallen and landed on the blue rubber mats, my right leg twisted beneath me.
‘I’ll pay tips,’ I said.
‘You’re all right, love,’ she said. ‘Don’t worry about that.’
Then, in January, while I was working on my third novel, my right hand seized up. It quit. After an hour of typing it stiffened and curled, fell limp. Strangest of all, I couldn’t use a pen, especially not a ballpoint, for more than a minute or so.
I went to see my GP.
‘There’s something wrong with my right leg,’ I said. ‘It turns to wood when I’ve been walking for about ten minutes.’
He wondered if I was tired.
‘I’m never tired.’
I also told him about my hand and he wondered if I might be over-doing it. He told me to report back if the problems persisted.
At the next appointment it was my GP’s birthday. There were balloons in his office and he was in a good mood. He told me about his volunteer work with the ambulance service and I liked him all the more for that and found the nerve to tell him about my bladder.
‘Sometimes I need to duck down alleyways or go into underground car parks,’ I said. ‘And I have a few weird problems with my bowels.’
He called for a nurse to act as a chaperone and together they assembled the white screen and the gurney. My GP said to put my knees up under the sheet.
When the nurse left, my GP said me he’d found nothing wrong. He seemed annoyed; not as though he thought I was a Munchausen’s case, or a hypochondriac, but just plain annoyed. He turned his swivel chair away from me.
‘Something weird’s going on,’ I said. ‘As well as my leg and those urgency problems, I have a burning pain in my right arm.’
He wondered if this might be RSI or tendinitis.
‘But would that explain why I’m always dropping things? And what about the strange constriction in my throat, especially when I’m angry or nervous? Like now.’
MS is difficult to diagnose. There’s a long list of symptoms and so many of them – fatigue, weakness, dizzy spells, blurred vision, nausea – look and sound like the ordinary things that sometimes strike healthy people. And in many MS patients the symptoms manifest in peculiar and unpredictable ways. But something about the pattern of my symptoms caused my GP to stop tapping his keyboard and book an MRI scan.
A few weeks after the scan I got a letter from the neurology department at Withington Hospital and it said, ‘The MRI has revealed significant brain inflammation.’
On 4 June, I waited in the corridor outside a neurologist’s office. A pretty girl in her early twenties sat next to me, with her turkey-necked mother opposite. The girl used a walking stick to take the short journey to the bathroom and I watched her with a semi-blind neutrality, no contempt, or pity; no special regard.
In two days, on 6 June, I’d be forty. My head was sore with two things: a vain dread of getting older and the work I needed to do to cure the problems in my third novel. I wasn’t worried about seeing the neurologist. Not one bit. Whatever this inflammation was, medicine would wipe it out. I was glad to know the symptoms weren’t phantoms. They were glitches and they’d be cured.
The neurologist called me into his office. He was short, about fifty-five, olive-skinned. He might have been Jewish and that made me happy. He looked like the father of one of the smartest Jewish boys I’d gone out with when I was studying law.
‘Take a seat,’ he said.
He was polite, and he knew my name, but he didn’t have much time. He made this clear by not wasting any. He turned his monitor to face me and I saw the MRI’s black-and-white copy of my brain.
‘These are the scars of multiple sclerosis,’ he said.
He used his pen to point at the blotches in my brain and he looked in my general direction, but he didn’t go near my eyes.
‘You have multiple sclerosis,’ he said.
‘Really?’
‘You’re lucky,’ he said. ‘Most people are diagnosed in their early twenties.’
What the Hell is Multiple Sclerosis?
MS is an incurable and often progressive disease of the central nervous system (CNS). The CNS controls movement, emotion, sweating, the secretory glands, emptying the bladder and all the vital functions that depend on nerve cells (neurons). The white blotches on my brain are the scars representing permanent damage to my CNS. In short and crude terms, every neuron consists of a cell body and a series of processes including the nerve fibre (axon). Nervous impulses must travel along the axon to link with other neurons and the axons are surrounded by a sheath: a complex chemical called myelin, which is vital to the process of accelerating the conduction along the axon. In MS the myelin is damaged and its damage means that the electrical signals are slowed, retarded, impaired, cut off or blocked altogether.
In an effort to explain MS to lay people, the myelin sheath is often likened to ‘the insulation around an electrical wire’. I say MS is like a radio in a black cab which seems never to get a clear signal on the BBC World Service. When the driver switches to the BBC, the sound is scratchy and sometimes drops out altogether, especially when you pass under a bridge or there’s an aeroplane overhead. The driver says, ‘Sorry, love. The BBC don’t work on here,’ and so you’re stuck with a live broadcast of a Man City v. Liverpool match and you want to cut your head off.
When the neurologist who diagnosed me sensed that I wasn’t ready to leave his office, he turned the computer screen away from me.
‘Multiple sclerosis,’ I said. ‘Shit.’
‘It might not be as bad as it sounds.’
He told me that there’s a broad spectrum of MS, from mild to serious, but it was hard to say what might happen in my case. It was too early to tell whether – in five years, ten years – I wouldn’t be able to speak or swallow. But not to worry.
‘I’m going to book you in for steroid treatment.’
‘OK,’ I said.
Joan Didion and Dignitas
When I got home I googled ‘famous writers with multiple sclerosis’ and Joan Didion was the only recognizable name on the list. I was annoyed that she has relapsing-remitting MS, with symptoms that come and go, and hurt her, but don’t ruin her. Jonathan Katz, the creator of the Emmy Award-winning masterpiece, Dr. Katz, was on the list too, and he has the worst kind of MS. He can’t write much, can’t walk much and needs a wheelchair when he appears onstage. I wrote to Jonathan that night and so began our friendship.
Two days later, the day of my birthday, I was in Dublin as a guest of the Dublin Writers’ Festival. After my reading to a small audience (about a hundred people) and after signing copies of my novel Carry Me Down (four copies), I went back to the hotel to watch TV and choked on some chocolate. I couldn’t swallow, my throat had closed and I was sure this meant brainstem damage. I’d end up like Jacqueline du Pré: alone in a wheelchair parked by a drizzling window, silenced, then dead.
I googled ‘Dignitas’, ‘plastic bags’ and ‘Exit’ and, while I was at it, the phone rang. I cleared my throat and did a radio interview (I can’t remember who with, or what for) and after I’d finished putting on a good act, all tough-talking, I went back to googling ‘brainstem damage’ and ‘home-made suicide kits’.
My reaction to having MS isn’t typical. In that first year, in 2008, and for most of 2009, I was sure that being sick wrecked the careful brick-by-slow-brick version of myself that I’d spent thirty years building; a carefully controlled, hyper-modified being; a sometimes dissociative selfhood made in opposition to my family.
I told very few people about the diagnosis and none – except my GP – knew how dark, how close to death, my mood had become. MS had ruined the good story: the clever, slum survivor narrative. In this story, I’d made myself, dragged my life from nothing into a pretty good something. I was bionic, a physical and psychological mutant; preternaturally strong, tougher and smarter than the faulty dictates and predictors of my shabby genes. The idea of being impaired meant that after all I had done to escape the life I’d been born to, I’d ended up a failure like them, like my family.
My father is illiterate. He’s also a drunk, a gambler and a thief. The best part of him is his wit, but that hardly got a chance, and it’s all gone now, along with his mind and memory. He’s sixty-five and living in the care of the Wesley Mission and he has Korsakoff’s syndrome, a neurological disease caused by alcohol abuse and malnutrition. He’s five foot nothing and wears thick lenses. His green eyes seem distorted and enlarged, and as he gets older and loses more and more weight, his eyes get eerier, like the eyes of a terrible deep-sea fish. I haven’t seen or spoken to him for more than ten years.
My brother is also illiterate and even more bent out of shape than my father; a violent criminal, a drunk and a part-time junkie. Like my father, he’s spent most of his life in prisons, psychiatric hospitals or living rough. I haven’t seen or spoken to him for more than fifteen years.
My mother grew up in Dublin polio hospitals – ten years in cots – trained for nothing by Catholic nuns. From the age of five – the day she fell into a pond in Wexford and ‘caught’ polio – to the age of fifteen, she hardly moved at all. For some of that time she was in an iron lung and was twice given extreme unction. She walks with a sideways limp, and can’t stand with her feet flat to the floor because when she was a child her ankles were hobbled by a surgeon. This ankle-breaking procedure, normal in the 1940s, was designed to allow girls struck down with polio to wear high heels when they ‘grew up’.
She lives in a weatherboard bungalow now, with my forklift-driving stepfather, and in their nervous, small lives, they have nothing to spare. They fret and scrimp and scrounge. Their best furniture is covered with beach towels and they’ve little to read but Al-Anon pamphlets and cowboy westerns. When something goes wrong, there’s a platitude to salve the pain and stop the thinking: ‘Count your blessings’ or ‘Live and let live’. In her schema, there’s God, of course, who works in such mysterious ways that sons turn into criminal madmen even though nobody did anything wrong.
My mother made a slave of herself to raise me and my brother. She worked every day of her life, in typing pools and sitting on reception desks, and all along she said the same thing: ‘All I ever wanted was a happy family.’
I feel profoundly sad for her, for my brother and father, too. But I can’t be near them, can’t belong to them. I worry for them, dream about them, but I can’t talk to them. They frighten me. And so, against this background, having MS felt tantamount to losing, and felt too close to being like them; a failure and a victim. For these reasons, and others, my response to the diagnosis was catastrophic; violently deformed and distorted. I told very few people; I kept it a secret. I didn’t want my students to know, or the people who don’t like me to say, ‘Serves her right,’ and I didn’t want reviewers of my third novel to write, ‘M.J. Hyland, that poor novelist with MS, has done a decent job – all things considered.’
Until now, I haven’t written about MS, unless you count suicide notes such as ‘From is to was’ and the letter that I would send to somebody with keys to my house. (The draft of this letter said, ‘I’m very sorry for this, but you’ll need to let yourself in. I’ll be asleep upstairs.’) I also wrote a will and thought about who’d be given the job of finding me. (I ultimately decided I’d leave this job to the police or my GP. I’d ask them to take me off somewhere cold and to make sure my organs were donated.)
I’m ready to talk and write about it now. I’m out of the pit.
Steroids v. Homeopathy
A few weeks after the Dublin Writers’ Festival, I was in hospital with a cannula stuck in my hand, getting an IV infusion of high-potency steroids. The five-day infusion of steroids acted as a short-term mood enhancer, reduced brain inflammation and lessened the worst of my symptoms, which were (still are) a hand that freezes after about two hours of writing and a leg that needs to be dragged home after a few hundred metres.
One of the patients in the MS ward was a 24-year-old man with nice muscles (he wore shorts and T-shirts). He was an inpatient, like me. Down the end of the ward, near the Acute Brain Unit, where the TV was, he told me he’d run the London Marathon the year before.
‘One morning, I just woke up paralysed,’ he said. ‘My girlfriend had to rush me to hospital. I couldn’t walk for weeks.’ The only warning was ‘a few months earlier my left eye had gone fuzzy and I couldn’t see’.
He’d described two of the most common symptoms of MS: paralysis – usually temporary, yet terrifying – and optic neuritis, partial blindness, usually temporary, but also terrifying. And while I was in hospital, I saw that what the neurologist had told me was true: most people are diagnosed with MS in their twenties and, unlike me, most don’t smoke, or despise vegetables, or have sick families. MS takes on the young and the healthy, the fat and the spongy, the tall and short; truck drivers, surgeons, dancers and teachers; people who are no sharper than a muffin, and people who are super smart. It takes on chess players, rugby players, law students, van drivers, doctors, guitarists and people who believe in God.
The only irrefutable fact is that you’re much more likely to suffer from MS if you live in the northern hemisphere, more likely still if you live in the north of England, in Scotland or Nova Scotia, and if you’ve experienced a lack of vitamin D in early childhood. (I spent my childhood in Dublin: no oily fish at teatime and not much sun.) MS is not my punishment for being a smoker, for disowning my family, for being a jerk, or for being an atheist.
In late 2008 I went to a series of information sessions for the ‘young and newly diagnosed’, a once-a-week-for-six-weeks programme, called something like ‘Coping with MS’. The venue was a conference room with purple curtains and red carpet; a chain hotel at the butt-end of Manchester, opposite McDonald’s and a casino.
On the fifth night there was a special ‘guest speaker’, a man with MS. He was about forty, had a pot belly and was wheeled into the room by his skinny girlfriend. During his talk about ‘coping with MS’ he rubbed his tattooed arm and sobbed. When he’d finished crying and saying things like ‘At the end of the day, life goes on’, and ‘To be honest, you just gotta get on with things’, his girlfriend wheeled him out, and they both had a roll-up.
When I got home, I did more googling for ‘guaranteed painless suicide methods, preferably with no vomiting’. I found the Hemlock Society and read some forum discussions about ‘Exit Bags’ and I made notes for future reference.
I went back the next week for the final ‘Coping with MS’ session. A neurologist had come to chat about new drug treatments. One of the people sitting in the plastic chairs round the conference table, using a free plastic pen and eating free biscuits, was a beautiful, very tall young girl who had told us – when we all introduced ourselves – that her impairment was mild; a tingling in her feet and hands, bouts of numbness and weird dizziness and fatigue that sometimes knocked her out.
After the neurologist talked about self-injecting subcutaneous interferon beta-1a (Rebif) and other drugs, the tall girl offered to drive me home. She told me she was working as a model and had been flying from Milan to Manchester after a ‘huge fashion shoot’ when she’d realized something was wrong with her body.
‘It was weird. I started choking on one of those hard-boiled sugar-free sweets. I just couldn’t swallow properly.’
When we got stuck in Trafford football traffic, she told me that she’d been using homeopathy to help with her symptoms.
‘I don’t buy it,’ I said.
‘You should,’ she said. ‘Alternative medicines are much more holistic and, like, sensitive.’
This tall, beautiful girl lives round the corner from me and the last time I saw her – about a year ago – she was using a walking stick. She can’t work any more. She has primary progressive MS, the worst kind, and collects a disability pension. She’s twenty-three.
The man with the nice muscles I met in hospital when I was getting dosed with steroids has the least disabling form of the disease, known as relapsing-remitting – just like Joan Didion’s brand of MS – and he’s running marathons again.
2009 and a Brand New Drug
In early 2009 I started using voice-recognition software to write. I put on headphones and used JFK’s inaugural speech to train the software to recognize my voice. On the first day, when I was sick of the mess of it, I said: This is a fucking pile of shit and the software typed: ‘This is a flocking to the pilot sheets.’
After a day of training, recognition reached 99 per cent, but by the end of the month, I knew I wouldn’t be able to dictate fiction. Writing fiction is the physical act of pushing words round the page until they lock good and tight. Using speech to write was like doing a jigsaw with mittens on. Turns out I need to use my hand to write fiction. I find the words, feel them out; need pen and paper and the act of typing to put the right words in the right order.
One morning, in early 2009, I got two texts from friends who urged me to listen to the morning news: a new drug was being trialled; perhaps it might even be a cure for MS. The drug was Alemtuzumab, an aggressive immunosuppressant, and though not a cure – it can’t reverse neuronal damage – it’s the first treatment that promises to halt the progression of the disease.
I sent an email to my neurologist right away and asked him if I could join the drug trial. He was reluctant. The trial was closing soon, and the few places left would be reserved for people with the mildest form of the disease. I called a specialist MS nurse and she was no help at all. She didn’t know what I was talking about, couldn’t pronounce the name of the drug and didn’t know anything about the drug trials.
I went online and found the names of the neurologists and immunologists who’d created the drug. I wrote directly to Dr Alasdair Coles at Cambridge University and he replied with enormous generosity and gave me the names of two neurologists, both of whom were heading up Alemtuzumab trials in their respective hospitals. I wrote to both.
There was a catch. To get on the drug trial I’d need the neurologist who had diagnosed me to write a letter advocating my involvement. He didn’t refuse, but remained reluctant. Perhaps he didn’t want to give me false hope. And so, I used the worst and best of my pushy, stubborn character, and I got the letter.
About a month later, I was in London meeting the remarkable Professor Gavin Giovannoni, who heads the London trial for Alemtuzumab. After a day of tests, both cognitive and physical, and a new MRI scan, Professor Giovannoni authorized my place on the four-year drug trial.
As with all drug trials, this one is randomized and controlled, and uses two treatment groups selected at random. One group gets the wonder drug, Alemtuzumab, the other gets subcutaneous interferon beta-1a (Rebif), a weaker treatment than Alemtuzumab – but a viable treatment nevertheless.
I can’t say which of the two drugs I’m taking. I’m still a patient on the trial (we’re in year four, phase four, the final phase, known as the safety phase). Every three months I go to London to get treated and tested. And, every month, a phlebotomy bus comes to my house and a nurse takes blood, my pulse, my blood pressure and a sample of midstream urine. While she waits, my blood gets spun (to separate the plasma) and then a courier collects the samples to send to Genzyme, the company that manufactures the drug. I am also seen regularly by a ‘blinded’ doctor in London (a doctor who’s not permitted to know which of the two drugs I’m using, or have used).
Four times a year – at the Research Clinic at the Royal London and Barts – I’m taken through a battery of tests to measure impairment and disease progression. I take a balance test, a paced auditory selective arithmetic test, walk on a treadmill, take eyesight tests, tests for spasticity and briskness – a sharp implement is dragged along the soles of both feet – and coordination tests. I am no more impaired now than I was when the trial began in 2009, and for an MS sufferer, this is an astonishing and unlikely piece of good news.
The Secret
Until now, I’ve told only a few people I have MS. Most of my colleagues at the University of Manchester think I drive everywhere and never turn up to departmental meetings, or after-work drinks, or Christmas parties, because I’m lazy, pig-headed, selfish and antisocial. Keeping MS a secret has been pretty easy – so far. When people see me at all, it’s because I’m sitting in front of a room full of students, walking the 125 metres between a disabled car park and my office, or the twenty-eight metres from my office to the lecture room, or from the road outside my hotel where the taxi has dropped me off, or getting into the lift to go up to my hotel room even if it’s on the first floor, or on the short walk between festival-event tents, or from the taxi into the BBC studio or, on good days, as I walk from my house to the corner shop. For emergencies I tell people I have an ingrown toenail or that I recently had a fall rock climbing (another one). I don’t look disabled – not yet.
I don’t have some of the usual symptoms of MS such as Lhermitte’s sign, the sting of an electrical shock when the head is lowered. I don’t have the sensation of ‘water pouring down the back of my leg’ or, as Jonathan Katz also once told me: ‘the feeling you get when you park the car and step out and you think you’re still moving, and so is the car, everything is spinning and moving’. And although my right leg still turns to wood, becomes weak and inert after a few minutes of walking (often after less than a block), I don’t have drop foot and I don’t fall over.
And I don’t have debilitating fatigue – not any more. In 2011, I discovered Modafinil (Modalert/Provigil), a neuro-enhancer used to treat narcolepsy and sleep apnoea. I take 400mg of this drug every day, and it means I can write longer and don’t need to sleep so much. Modafinil works, and Professor Giovannoni is happy for me to use it. But, in the UK, Modafinil is an off-licence drug, and my GP can’t (and won’t) prescribe it. So, like many with MS and Parkinson’s who’ve discovered the efficacy of Modafinil, I’ve no choice but to order the drug online and take the risk of being fed duds, sugar pills or worse.
The MS symptom that hurts me the most is Uhthoff’s syndrome: it makes me heat-intolerant and means I can’t take hot baths or showers – not ever – and in warm weather, I’m fucked.
In August 2011, I was a guest of the Byron Bay Writers’ Festival and so was Tim Ferguson, the Australian comedian and TV presenter who ‘came out’ a few years ago with the news that he has MS.
The day after his announcement, thousands talked of their shock: ‘But he looks so well!’ When I found out that Tim was in Byron, I sent a message to his publicist. The next afternoon, in that hotter-than-normal August in Byron Bay, Tim called me, and we talked.
I was lying on my bed, heat-wrecked and very tired. The overhead fan was turned to full blast and the blinds were closed and, as we talked, I wondered what Tim was doing. I imagined he was sitting, his walking stick somewhere near, and maybe there was an ice pack on his head.
We talked about lots of things, including MS. I told him stuff I had never told anybody, and it felt good. I told him that some mornings I can’t peel the foil lid from a plastic milk bottle, that I’m not able to walk up more than a single flight of stairs, how I have to drain my bladder, and sometimes manually evacuate my bowels – especially before a long drive, a lecture or festival gig, in case there’s an ‘accident’ – and then, when there’s any kind of heat, it all gets worse.
For more than a decade Tim toured the world with the Doug Anthony All Stars (DAAS) – the multi-award-winning comedy act – and he was known as ‘the pretty one’. There’d be few people in Australia who don’t know Tim Ferguson’s name, and most in Sydney and Melbourne would recognize him in the street. When I was in my early twenties – and even though he isn’t Jewish – I had a crush on him. I once queued up for an hour in the hope of scoring a ticket to one of his sell-out gigs.
Like me, for a long time, Tim told nobody he was sick. Unlike me, his illness is unpredictable, things stop working, he gets ‘pins and needles’ and his ‘eyes go wonky’ and his ‘writing hand doesn’t work so well’ and then the symptoms disappear for a while, and sometimes come back even worse than they were before, or come back as different symptoms, some better, some more disabling.
Tim told me about numbness, blurred vision, falling out of bed, bouts of paralysis and not being able to dance ‘with only one leg’, which is his worst symptom, and the thing that brought touring with DAAS to a sudden end.
‘When my hand’s very bad,’ I told him, ‘I wear my bra to bed in case I can’t fasten the clasp in the morning.’
I also told him how I drop things all the time, smash cups and plates, can’t carry a packed suitcase, can’t use the London Underground because of the heat and the stairs, and can’t stand in a queue in the post office – or stand much at all.
It was very good to talk.
I didn’t tell my boyfriend that I have MS until we’d been together for three months. I’d blamed not walking (and not moving much) on an ingrown toenail. I didn’t make excuses for the other symptoms. We spent most of our time reading, writing, teaching and talking, and so my sluggish ways didn’t seem strange.
In May 2010 we were in London for three days. On the third day I was in the Royal London and Barts for treatment. Trevor thought I’d been teaching a fiction workshop and when I got back to the hotel room he saw a bandage on my arm, which covered the place where the cannula had been. I’d forgotten to peel it off.
‘What’s that?’ he said.
I told him about the bandage. I told him nearly everything.
That was more than two years ago, and we’re together still. We have no children, but we’ve taught the voice-recognition software to swear, filled the house with portable fans, replaced the smashed crockery with melamine, and I’ve cancelled my pact with dying.
Illustration © Francesco Bongiorni
