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‘The consultant will study the images and discuss the results with you. He has to interpret them.’
I knew they had found something. They must have. Why else had it only taken a few minutes? But they wouldn’t tell me.
I was due to travel up to Yorkshire the next day to see the therapist I’d been referred to, but I rang my neurologist first.
‘Should I go to Yorkshire?’ I asked, and explained the situation.
‘No, come in to see me tomorrow morning at ten to nine, before surgery starts.’
That’s when I knew for sure that they’d found something. I spent the night imagining the worst and trying to talk myself round. My aunt and uncle drove me to the hospital the next morning and at my request they waited outside in the car park. I wanted to face this on my own.
‘So what is it?’ I asked as I sat down, more nervous than I was when I sat my O levels – and that’s saying something.
The consultant looked grave. ‘When I first saw you, I thought you had MS.’
I waited for the other shoe to drop.
‘And it is MS.’
It’s normally hard to shut me up, but I couldn’t think of a single thing to say. The consultant continued that he was going to refer me for a lumbar puncture so that he could definitely rule out a couple of other things, but said he was convinced it was multiple sclerosis. He had been pretty sure from my gait when I first walked into his office, and the MRI scan had backed up his instinct. We made an appointment to talk again after I’d had the lumbar puncture.
I left his office and walked back down to the car park, where my aunt and uncle were waiting, and still I couldn’t speak. I got into the car and stared at them wordlessly with an overwhelming sense that my life had just changed for ever.
Then I rejected it. He had to be wrong. Please, God, he simply had to be.
Chapter 3 ‘Can I Scuba-Dive?’ (#ulink_b9f8d3e3-60e4-5ed4-8e7f-b93408787455)
The only thing I knew about multiple sclerosis was that it was not a good illness to have. All I could think of was a poster I’d seen of a girl with her spine torn out and the legend ‘She wishes she could walk away from this picture too.’ Did that mean I wouldn’t be able to walk any more? That’s when I began to get upset. I couldn’t bear it if I ended up in a wheelchair.
I was in a complete state when I rang my best friend, Vera, a Viking from Oslo. ‘My life is over,’ I wailed. ‘Omar won’t want to go out with me any more. No man will. My friends won’t want to be my friends any more because I’ll be stuck at home and I won’t be able to go out. No one will want to know me. I’ll be useless.’ I must have sounded shrill and tearful.
Vera listened to my rant and then breathed deeply. I could feel her shifting her position to give the verbal equivalent of the slap you deliver to a hysterical woman.
‘You idiot! You can’t think very much of your friends if you think that. If I told you I had MS, would you stop being my friend?’
‘No, but—’
‘Well, how dare you even think I would stop being your friend just because you’ve got some disease! You wouldn’t abandon me, so why would I abandon you? Stop wallowing in it. Grow up and get on with your life!’
I felt myself start. The result was pretty much as if she had indeed delivered a heavy slap: the shock brought me back to reality. This wasn’t a romantic game, it was reality, and I was going to have to get used to it. I don’t like to admit it, but if things are out of my control I have a tendency towards self-pity. If anything was going to drive people away, it would be that, not the diagnosis. I rang a few of my more pragmatic friends to sound them out. I didn’t want people who would gush with sympathy. I wanted facts.
‘Don’t worry,’ one friend told me. ‘They’ve got a cure for it now.’ A drug called beta-interferon had been all over the news recently. ‘If you start taking it early enough, it’s got a really high success rate.’
How long had I had the disease, though? When had I first noticed my legs were getting weaker? Lots of memories flooded my brain. I thought back to when I was learning to waterski in Hong Kong in 1988, seven years earlier, and I hadn’t been able to stand up in the water. We’d tried over and over again, but I hadn’t been able to rise elegantly from the water, so I’d sat on a jetty and they’d towed me off from there. I remember feeling frustrated. Had that been an early symptom of MS, or was it just me being clumsy and impatient? (My MS has probably been unfairly blamed for many failings over the years, but if I’ve got to put up with the disease I may as well.)
I phoned other friends. Some told me they knew people with MS whose lives were barely affected. They still walked, held down jobs, had children and you’d never know they were ill except that they occasionally got a bit tired. That was comforting – that’s what I wanted to hear. I’d hoped it was a brain tumour because I’d imagined that, once treated, I’d get back to my normal self without any further repercussions, but I reckoned I could cope with a mild dose of MS that was controlled by taking this new miracle-drug, beta-interferon.
I phoned my old friend Mike. He was living in Vienna but happened to be in Paris, and he said, ‘Come out for the weekend. We’ll take your mind off things.’
We strolled along the Seine, stopping for coffee whenever my legs got tired and I started staggering. Passersby gave me scathing looks, thinking I was drunk, and I wondered if this was something I’d have to get used to.
‘Hello? Since when have you worried about what other people think?’ Mike teased.
In the evenings we went to piano bars and listened to chanteuses singing of unfaithful lovers and lost chances. It was good to be in another place, distracted from what was going to happen to me in the coming week, never mind the coming years. Mike had just broken up with his partner, the mother of his son, so we talked about that at length and didn’t dwell on my diagnosis. The only advice he gave me was about practical things, like making sure I had the insurance policy on my mortgage on my Bradford house sorted out before the diagnosis was official. Did I even have an insurance policy? I hadn’t a clue.
‘Are your savings in a high-interest, easy-access account?’ he asked.
‘What savings?’ Didn’t he know me at all? I wasn’t the kind of girl who had savings. I lived for today, spending every penny as I earned it and sometimes even before.
Still, I pretended to take note of all Mike’s nuggets of wisdom. It was good to focus on hard facts rather than speculate about the disease, and I was glad he was taking this approach and not smothering me in sympathy.
On Monday morning, after my weekend in Paris, I flew back into Gatwick Airport at 9 a.m. and jumped on a train straight to the hospital, only making it on time for my lumbar-puncture appointment because of the one-hour time difference between France and England.
The procedure was straightforward. I lay on my side on a hospital bed and curled up in a foetal position so that the doctor could stick a needle into my spine and extract some spinal fluid for testing. I was fine for the rest of the day, but the following morning I woke early feeling like I had the worst hangover of my life, with a God-awful, teeth-grinding headache that lasted for days. (I don’t object to a hangover if I deserve it, but this was just unfair.) Not everyone reacts like this to lumbar punctures, I hasten to add. More than 80 per cent of patients feel fine afterwards. Just my luck to be in the wrong percentage.
I made up a list of questions to take to my next appointment with the consultant a few days later and tried to compose myself. I wanted to come across as intelligent and able, the kind of person he would be glad to have as a patient. I wouldn’t break down or become hysterical; I’d be rational, logical and calm.
‘Are you absolutely sure it’s MS?’ I asked first, a germ of hope still lingering that he might have got it wrong. ‘Isn’t there anything else it could be?’
‘I could see the scleroses in your MRI and the lumbar puncture confirmed that it wasn’t anything else,’ he said.
‘What are “scleroses”?’ I hoped this wasn’t a dumb question.
‘Your central nervous system is like the wiring in your house. All electric cables have plastic round them to make sure that when you switch on an appliance the current just goes down the wire from the mains to the appliance. If you have a break in that plastic coating, the current leaks out and the appliance doesn’t work.’
I nodded. That made sense so far.
‘In the central nervous system the equivalent of the plastic surround is a fatty tissue called myelin. When there is damage to the myelin, it’s called a sclerosis. This disease is called multiple sclerosis because there are several places where the myelin has degenerated.’
‘How many?’
‘Different people have different degrees of the disease. If they just have a few small scleroses in unimportant areas, they might never notice any symptoms. If they have big scleroses in important areas, they will have more problems.’
‘Like not being able to walk?’
‘Like not being able to walk.’
I took a deep breath. ‘So what are my scleroses like?’
‘Not too bad. We’ll just have to wait and see how things progress.’
That was something. At least he hadn’t said, ‘Huge, gigantic, massive.’
‘I’ve heard about this drug beta-interferon. Should I start taking it straight away?’
‘I’m afraid you’re not a suitable candidate for beta-interferon,’ he said, dashing one of my pet hopes. ‘There’s a type of MS called relapsing-remitting and research suggests this drug may reduce the frequency of relapses, but I think you have another type called primary progressive. You’ve shown a pattern of mild but continuous symptoms, rather than severe episodes followed by periods of remission.’
‘Is that better?’ I wanted to ask, but didn’t. I had a feeling it wasn’t. I didn’t like the sound of the word ‘progressive’. Instead I asked, ‘What’s going to happen?’
‘Debbie, the only thing I can tell you is that it’s not going to get any better. That’s pretty much it.’ He was watching me closely for a reaction, but I was too busy weighing up his words and trying to read causes for optimism into them. ‘Get on with everything you want to do whenever you want to do it, and when you find you can’t do something, just stop.’
‘OK,’ I said cautiously.
‘Meanwhile I think we should measure you for a walking stick to help broaden your base.’
What? My base is broad enough as it is, thank you. (Like I said, my bottom just can’t be disguised, but people don’t have to comment!)
The neurologist obviously saw my confused expression. ‘I mean to steady your walking,’ he replied, smiling. ‘You’re dragging your left foot a bit.’
My walking was particularly wobbly because I’d sprained my ankle navigating some uneven ground with Mildred’s partner just before I left Singapore. We’d gone out walking in a quest for fitness and had ended up having to take a taxi home after my stumble. The episode seemed ridiculous now.
‘OK,’ I said. I hadn’t realised you needed to be measured for walking sticks, but apparently you did.
‘Any more questions?’ he asked, leaning back to indicate he had all day if I needed, even though I knew he had a bulging waiting room outside.
So I took a deep breath and asked the Big One: ‘There’s no cure, is there?’
‘No, there’s no cure.’
We sat in silence for a while, my mind blank. I knew there were dozens of questions I should be asking, but I couldn’t think of them and the list I’d made lay forgotten in my pocket. I decided I had better let him get on with his day, so I stood up, shook his hand and turned to leave.
I was halfway through the door when I turned back.
‘Can I scuba-dive?’ I asked, thinking about my job on the adventure travel brochures.
‘I don’t know. Can you?’ he replied.
It took me a few more days to process and digest all the information he had given me because it was just so contrary to what I’d expected. I’d had a good life and thought of myself as a lucky person. Suddenly things were running away from me, escalating out of my control. I’d been expecting to be diagnosed with something serious but curable, not some incurable illness that would just keep plodding on relentlessly. I wanted something glamorous with bells and whistles. I wanted miracle-drugs and dramatic surgical interventions and cutting-edge medical breakthroughs.
‘This is it, the end of my life,’ I sobbed to my sister Carolyn. ‘It’s going to get worse and worse and then I’ll die.’
‘Stop being so histrionic,’ she told me. ‘The doctor might have got it wrong. Even if he’s right, there’s bound to be something that can be done. We’ll just find out what it is and we’ll do it.’
Although they’re very different personalities, all my siblings reacted in much the same way. My brother, Stephen, was typically matter-of-fact: ‘Right, OK, let’s get on with things, then. No point making a fuss.’
The neurologist had said it was incurable. How was that possible? If my dad were still alive, I knew he would have found a cure. He’d been an incredible character. Thrown out of school at the age of 13 because he had a tendency to question the ‘correctness’ of his textbooks rather than spouting the answers teachers wanted to hear, he made a career out of his questioning mind. He was working as a photo-journalist for the Brighton News Agency when he was asked to look after a friend’s typesetting business while he was on holiday. Dad thought there had to be a better way of setting type rather than placing each letter by hand. Other people had tried, but they hadn’t been able to create the right size or shape of cathode-ray tube (the things that make televisions work). Dad didn’t have any qualifications in electronics, and he hadn’t read the books that would have told him that it wasn’t possible to manufacture a tube of the size he wanted, so he just went ahead and made the right size of tube and used it to build the Linotron 505, which was the first commercially viable cathode-ray-tube typesetting machine.
He’d always been creative. Back at the age of 13, just before he was thrown out of school, he thought of a way of improving the mechanism of wind-up gramophones and wrote to HMV to tell them about it. He got a letter by return saying they had already done it, but they were impressed by his initiative and invited him to work for them. Sadly, he had to decline on the grounds that he was just a schoolboy.
Dad had tremendous enthusiasm for a challenge, as I have, and would work on one project for a few years and take it as far as he could before moving on to the next thing. After some years working as a photo-journalist, photographer and icecream maker, he found his raison d’être in new technologies that helped to revolutionise printing. The word ‘incurable’ would never have been in his vocabulary. Like Augusto and Michaela Odone, who researched and formulated a new drug called Lorenzo’s Oil after their son, Lorenzo, was diagnosed with ALD (adrenoleukodystrophy, to give it its full name), my dad would have taken my MS diagnosis as a challenge. I’m convinced he would have cured me because he could make most things possible.
If Mum were still around, she would have given me a big hug and said, ‘Don’t worry, Debbie. We’ll get through this, whatever it takes.’ She was gone, though, and I had no one left to give me a mother’s unconditional love.
This thought made me cry more than any other. I had to face this on my own, without parents. If my dad had still been alive, I’d have gone to stay with him in America and let him take care of me. I’d have felt more secure if I had even just one parent to fall back on. My sisters and brother were sympathetic, but they had busy lives with jobs and partners, and I didn’t want to move in with them and lie on a sofa waiting for things to get worse. I had to figure out how to manage this disease on my own.
Should I stay in the UK to be near my doctors? Should I go back out to Singapore and try to carry on with life as it had been before? That seemed to be what the doctor was suggesting, but I was scared I wouldn’t be able to manage on my own out there if my symptoms worsened.
And what about Omar? We’d only been dating for two weeks before I came back to the UK for my appointments. He couldn’t be expected to take my problems on board. I didn’t even know how I could begin to explain them to him, given the language barrier. He would still be in Jakarta, but I had a phone number for the club there, so I decided to call and attempt to explain what had happened.
First of all, I rang the Spanish Embassy in London and asked the woman who answered the phone, ‘How do you say “multiple sclerosis” in Spanish?’
‘Esclerosis múltiple,’ she told me. (So glad I got that sorted!)
Then I rang Omar and tried to tell him, in our usual mishmash of languages, what was wrong.
‘Je suis malade. Esclerosis múltiple.’
I was crying and I hadn’t a clue what he was saying or even whether he had understood, but the calmness of his tone was comforting.
‘No te preocupes. Come back to Singapore.’
‘OK,’ I sniffed. I’d had a look at the flights and there was a cheap one available on 3 April, so I told him I would get that.
‘See you at Fabrice’s!’ I said, hoping he would pick up on the name and understand what I meant.
When I walked through the arrivals gate at Changi Airport expecting to be met by my boss, Peter, there was Omar standing waiting for me. I’ve never been so pleased to see anyone in my life. I ran into his arms and hugged him tightly, so relieved I couldn’t speak. It was a wonderful, euphoric feeling. But what was he doing there? How had he known which flight I was on? I hadn’t mentioned it to Mildred and he didn’t know Peter.
Peter arrived and was able to translate for us. Although he’d grown up in Germany, he and his mother were Russian, and Omar spoke Russian, so they could communicate much more easily than Omar and I could. It seems Omar had got to the airport first thing that morning and had met every single incoming flight until I arrived after lunch.
I hugged him again, overwhelmed by my emotions.
I’d been planning to stay with Peter and his partner for a while. I wasn’t sure how much work I’d be able to do, but staying with Peter would make it easier to try. I figured I’d stay in Singapore long enough to pick up my things, and maybe enjoy the city a little before having to make proper plans about my life! The immediate plan was that Peter would drive me to my flat to pick up my stuff, then take me back to his place.
When this was translated for Omar, he said not to be ridiculous. He insisted that I was to move in with him and the band. He was squeezing my hand as he spoke and looking very serious.
‘Vente a vivir con nosotros – conmigo,’ he insisted.
I thought about it for two seconds, then smiled at him and said, ‘OK!’
Peter grinned.
We picked up my belongings and drove to Jalan Lada Puteh, or Peppertree Lane, where Omar lived in a house with the three girls and six boys who were members of the band.
My parachute had opened. Omar was going to take the weight.
Chapter 4 My Beautiful Career (#ulink_aa3b15ad-4d51-5997-8b7d-65aff0634dc8)
After leaving school I led a nomadic lifestyle, never staying in one place for long. My short attention span and love of adventure meant that once I felt I’d experienced a situation, I was ready to move on. This quality used to get me into trouble back at school and college, but after the MS diagnosis I felt grateful for it. Sometimes when fear and grief for my lost life got too much, I would hide in bed, pull the covers right up over my head and cry. I’d sob my heart out, feeling desperate and helpless, but then I’d hear a story on the News Channel (it’s been permanently on in my bedroom for years, only turned off at night if Omar is at home) that would make me gulp back the tears. It’s hard to feel devastated by your problems with walking when you can see the effects of the tsunami in Southeast Asia, people caught in the wreckage of Hurricane Katrina or bombs dropping on Gaza. The footage of those disasters showed people in unimaginable situations dealing with their lives as best they could, and I guess it put my problems into perspective. I could turn on the tap and get fresh, clean water to take my prescription painkillers, just phone a friend for a chat or use the computer to contact friends further afield. I will always need to mourn the ‘me’ that I’ve lost, but the desperate face of a mum who has lost her child to the war in Iraq makes me so grateful for the ‘me’ I’ve still got and not want to miss out on the things I can do.
My schoolteachers always used to complain that I didn’t apply myself, and none of them would have been surprised that by the age of 30 I’d done umpteen different jobs but never had what you might call a ‘proper career’. I took A levels in maths, economics, government and politics, and sociology, because since the age of 13 I had wanted to be prime minister. (I took maths because I was good at it and figured it would be useful if, as prime minister, I could at least balance a chequebook.) There were always lively political discussions at the dinner table at home, and with the arrogance of youth I thought I could solve the world’s problems by making the political system more fair and inclusive. I joined the Liberal Party and committed a lot of time and energy to the causes I believed would improve the world – as well as the ones that looked most fun.
I spent a couple of years knocking on doors campaigning for local councillors, and I learned wheelchair basketball and helped out at Sports Association for the Disabled. I planned to change the world by improving my corner of it. However, the more I learned about society, the more I realised that tweaking the existing status quo would be harder and less effective than building a new one. I began to read more political literature, and the more I read the more I considered myself a Marxist.
I took two of my A levels at a further-education college in Windsor. I remember my time there mainly for that first parachute jump with the Territorial Army, back in 1981, sparking my lifelong addiction to adrenaline rushes. About fifty of us, male and female, had signed up for the jump. During a couple of days away from college, I thought better of it and returned planning to drop out, but I discovered that of our original fifty, only six remained, all of them boys. That made me the last girl standing and I felt I had to do it as a matter of feminist principle.
I moved to London to do my other two A levels at a college near Old Street, and I lived in a squat – rather a nice squat, an old vicarage – with a fantastic bunch of people: a city stockbroker, a Buddhist with a motley collection of stray cats and, the reason I was there, some Marxist revolutionaries. I learned a lot, not least about choosing the battles that were most important and not being sidetracked by every little injustice you perceive. I went to Kingston Polytechnic to study sociology. Then, after a term and a half, I moved to Birmingham to read humanities (economics, politics and sociology). I made the move to Birmingham because of politics rather than education (although I think my involvement in politics was the best education available). I worked a few nights a week as a nightclub hostess, greeting people at the door and checking they conformed to the dress code (on the way in, anyway), and if we had live bands on, we had to frisk people if they looked suspicious.
In Birmingham, I decided that I wouldn’t graduate. I thought I was learning more from living, arguing and listening than I was from lectures. I bought my first house in Lozells, Birmingham, back in the days of 100 per cent mortgages, when buying was cheaper than renting. My bank manager said I should definitely go for a job selling advertising space for Thomson Directories because I had convinced him to lend me the £11,000 for the house while still a student! (These were the days when houses were homes, not investments.)
