The 50 List – A Father’s Heartfelt Message to his Daughter: Anything Is Possible

‘You’ll be fine,’ Lisa said reassuringly, as I parked the car in the church car park. She’d been saying it at regular intervals since we’d got up that morning, and though I was grateful – Lisa’s always such a big support when I’m feeling anxious – her reassurance was falling on deaf ears. I probably would be fine, I knew that, but that’s the thing with phobias: you think one thing, but your body does another.

The weather wasn’t helping much, either. There was heavy snow forecast over the coming days, and, perhaps as a taster, or perhaps as a personal portent, heavy rain had fallen overnight. And because a car had parked close to the ramped kerb I needed, my only way into the church was via a deep muddy puddle. Not something that would normally faze me – I’m quite an expert in my wheelchair – but, given the circumstances and my growing sense of impending doom, wheeling wetly through it (while busy cursing inconsiderate parkers everywhere) only added to my sense of foreboding.

Inside the church hall, where the temporary blood-letting – sorry, blood donor – service had been set up, there was little to cling onto that would reassure the average phobic. Seven gurneys, I counted, once I’d given my name and we’d transferred to the waiting area, and on each was a compliant donor, to whom was attached a needle, which was attached to a tube, which fed the donor’s blood, in regular deep-red drips, into a plastic bottle. If there was ever a point to turn tail, this was definitely it; but strangely, though it looked like a scene from Doctor Who, there was something about the vampires – sorry, nurses – who were running this particular show that made the whole scene look unexpectedly calm and peaceful. And as a bonus, there was no one actually screaming. To my surprise, I felt a sense of relative calm begin to descend.

‘You’ll be fine,’ Lisa whispered again, seeing my gaze and misreading the effect it was all having on me.

‘You know what?’ I whispered back (it was that kind of place – hush felt obligatory). ‘I am actually looking forward to doing this, now we’re in here.’

‘You are?’ She didn’t look convinced.

But there was no time to wax lyrical about my new-found inner calm, because my name was called then, and we went off to a small temporary cubicle, where a nurse bearing a biro wanted to know all about my condition. This was a surprise, as it had been discussed at some length on the phone, as well as being detailed on the registration form.

Risking a quip, I explained that my ‘condition’ was ‘sitting down’, which she obviously found so unfunny that she went to great lengths to explain that since she personally didn’t know anything about my real condition, she couldn’t take blood from me without a letter from my doctor.

‘But I’m absolutely fine to do that,’ I explained. ‘I’m not ill.’ I explained again that this had already been covered over the phone.

But she was having none of it. As they didn’t know that, even if I did, I would need to get the letter before they could risk taking blood from me. And that was the end of it. I would have to go away and then come back again the next time the blood donor service was in town.

‘Isn’t there any way around this?’ I asked her. ‘Coming here’s been a really big thing for me today. It’s one of my challenges, you see.’ I told her about my 50 List, half hoping she might have seen it in the local paper; I explained how it worked, and what I was doing it for. ‘And this one’s particularly dear to me,’ I finished, ‘because of my phobia of needles. I’ve had it since I was a child, and I was determined to beat it. Meet it head on –’

But I could tell from her expression that there was no way I’d be meeting it today. ‘You have a phobia?’ she said. ‘Oh, well, in that case, we wouldn’t take your blood anyway.’

Apparently they felt it wasn’t a very good way of ridding someone of a phobia. So that was that. They all apologized, and I wheeled myself out again, my needle phobia still there to fight another day.

‘Never mind,’ said Lisa as we drove home, mission not accomplished. ‘You’ll just have to think of a new challenge to replace it. There’ll be something …’

We lapsed into what we hoped would be a productive, thoughtful silence.

And it was. An idea suddenly came to me. ‘I’ll try wood turning.’

‘Wood turning?’ Lisa asked. ‘Where on earth did that come from?’

‘Erm … it’s dexterous? It involves using my fingers? It’s probably tricky?’

Definitely tricky, if my childhood exploits in woodwork class are anything to go by.

‘And there’s a thought,’ I said testily. ‘Let’s hope I don’t rip my finger off on the lathe and require pints and pints of blood to save me, eh?’

Lisa smiled. ‘You’ll be fine,’ she said firmly.

14 February 2012

Number of challenges still to be completed: Er … still 50.

But number of challenges that are almost definitely going to be happening less than 10 days from now, all at once, and ON THE BBC no less: A big fat 3! Hurrah! Now we’re talking.

Just put down the phone to a man called Matt Ralph. He is a BBC television producer. Am amazed. What a difference a day can make, eh?

Everyone makes New Year resolutions, don’t they? Give up drink. Lose a stone. Read War and Peace. Be a Better Person. But having already made 50 of them before Christmas – way more than most people – come the New Year, I didn’t need to do much resolving. No, what I needed to do was get on and actually do them, and suddenly here we were, edging into spring, and barely anything had yet been done, bar a failed attempt to get someone to take some blood. I was beginning to feel that my deadline, 9 December 2012, my 50th birthday, was breathing down my neck.

I hadn’t even been able to get out and do much training for the half marathon, my initial burst of enthusiasm having been rained on from a great height. Frozen rain, in fact: the much forecasted, much anticipated and now interminable snow. And there are only so many times you can make a circuit of the coffee table before losing the will to live and/or becoming so dizzy you pass out.

‘You need publicity,’ my friend Simon Cox said to me firmly. It was a Tuesday, the kids were in school, and he was over to discuss business. He was a client now, as well as a close pal of mine, and once we were done discussing e-commerce solutions for his company, I’d showed him the new 50 List website I’d created – my pet project once the kids had gone back to school.

I’d also by now set up a JustGiving account. My mentioning the list on Facebook had brought a flurry of enquiries from friends wanting to know where and how they could make donations – and, more importantly, who I wanted to have them. So it made sense to make things official by putting that information on the website too, explaining that anyone who felt inspired to could donate direct to CMT United Kingdom, the charity that was the first port of call for people with CMT, myself obviously very much included. The money would then be split equally between ongoing research and supporting youngsters, like Ellie, with the condition.

I’d set myself a pretty ambitious target as well – to raise £5,000.

‘I know,’ I said to Simon. ‘It’s a lot to aim for, isn’t it?’

‘Which is why you need to get it out there,’ he said. ‘Fire people’s imaginations about it. Give them a chance to get involved. Local businesses even, maybe. It’s the sort of thing the local papers will jump on too, believe me. That might lead to sponsorship – financial help and so on.’ He pointed to some of the more outlandish challenges I’d set myself. ‘Which, by the look of this, you’re really going to need.’

Perhaps because I’d always thought I’d fund the list myself, it had never occurred to me to involve the local papers in what I was doing. I said so.

‘Are you mad?’ Simon laughed. ‘It’s January, remember – nothing doing. They’ll be all over this, trust me. Take a look out of the window. I reckon they’ll leap on any story they can lay their hands on right now that doesn’t need to include the word “snow”.’

I did as instructed and agreed he was probably right. I’d leap on anything that didn’t involve snow at the moment. Much as I didn’t want to be a grump and a killjoy, snow and wheelchairs were incompatible: that was a fact of life.

‘Seriously,’ he went on, ‘they’ll be all over this anytime. Tell you what. I have a friend who knows a journalist down at the Herald and Post. Let me have a word with her. See if she can get him to do a piece on it. Spread the word a bit for you. How about that?’

‘You think?’ I said. ‘You really think he’ll be that interested in all this?’

Simon grinned. ‘Nige, mate, you really don’t know what you’ve got here, do you? Just you wait and see, mate. Just you wait.’

And it wasn’t a very long wait. It was around 24 hours, give or take – no more than that – before a journalist from the Herald and Post was indeed on the phone wanting to talk to me and, having asked me a few questions about what I was up to, wanting to know when he could send their photographer round and get some pictures of both me and, he hoped, Ellie.

She was typically bemused at the prospect of being in the paper.

‘But why?’ she kept asking on the morning of the shoot. ‘Shoot’ – in itself a heck of a concept to get my head around.

‘So that everyone can hear about what I’m doing and why I’m doing it,’ I explained to her. ‘To spread the word, and I hope raise money for CMT.’

‘Yes,’ she said, ‘but why do they want a picture of me?’

‘Because you’re one of the main reasons Dad wants to do it,’ explained Lisa. She was brandishing a duster with an expression of mild fanaticism. She had been all morning. Where dust was concerned, she’d be taking no prisoners. There was no way her living room would be featured in the local paper looking anything less than squeaky clean and perfect. I wouldn’t have been surprised to be given a quick buff and polish myself. She’d already given the dog the once-over.

‘But you don’t have to if you don’t want to,’ I added quickly. Although I was doing this to inspire my youngest daughter, there was no way I was going to make her do something she didn’t want to do. So if she didn’t want to do it, then so be it. Ellie is feisty and self-possessed, but she is also quite shy. And the last thing I wanted was for any of this to make her stressed, or for her to feel that she was being pushed into the limelight.

But she surprised me. ‘OK,’ she said. ‘I don’t mind. It might be cool.’ Then she hurried off upstairs to get changed into her favourite Minnie Mouse T-shirt.

Then, as they probably became sick and tired of saying in the papers that particular winter, the whole thing, to our amazement, snowballed. The piece appeared in the paper the next day – it even had its own front-page intro – and the phone, as a consequence, began ringing.

First it was a news agency, SWNS, who expressed great enthusiasm for handling my ‘story’, which was something I’d never even thought of it as. It was a project, my project, that was all. But they disagreed. It was very much a story, they told me, and one they were keen to put out to the nationals, to see what they might make of it, too.

So they did, and they came back to me the following morning to tell me that it had also now been published in Metro, the Sun, the Daily Mirror and the Daily Telegraph. Not huge pieces – only a few column inches in most cases – but I was flabbergasted, as was Lisa, and all the kids.

The days that followed were no less surreal. In fact, they rank among the craziest and most overwhelming I’ve ever experienced.

Next came the calls from various radio stations. Would I be prepared to talk about The 50 List on air? Absolutely.

Then magazines. Would I be prepared to do interviews with them? Naturally. Then TV – 5 News, to be precise. Would I be prepared to travel down to London to be on their programme and tell the world how the idea of The 50 List had come about?

By now the phone was ringing almost constantly. No sooner had I hung up on yet another enthused researcher, and gone into the kitchen to give Lisa the latest update, than – brinngg brinnggg! – straight away it rang again.

‘Can you believe this?’ I asked Lisa every time it started up again. ‘So this is what 15 minutes of fame feels like, is it?’ I’d never dealt with anything quite so manic in my life.

Happily, the news agency stepped in to help us out, and became the contact to whom I could direct all the callers. This left me and Lisa free to think about what we could and couldn’t do.

The reality was that going down to London, to Channel 5, would be something of a mission. It would mean an incredibly early start and a complex journey via public transport; and both the prospect and the expense were a bit daunting. But it would potentially be a brilliant way to help my cause – and, I hoped, help me reach my fundraising target. Should I go?

I was still dithering when the email came in this morning – the email that topped them all. The big one.

Hi Nigel,

I’m a director working for The One Show at the BBC. I read an article about you and your daughter Eleanor in today’s Metro. I was sorry to read about your daughter’s diagnosis but it sounds like you are doing something really amazing to inspire her.

I wondered if I might be able to find out more about your challenges with the view of possibly helping you set up and complete some of them and film a piece about it for The One Show? If this sounds like something you might be interested in please feel free to get in touch. I’ll be happy to answer any questions and we can discuss what is possible and what is not.

Thanks for your time and hope to hear from you soon.

Best,

Karolina

I got straight on the phone, which was how I got to talk to Matt Ralph. And though I still can’t quite believe it, it’s all fixed. On 23 February I get to complete not one but three of my challenges: I’m going to do an indoor skydive, take a 4x4 off road and go powerboating as well. Now we’re not only talking the talk, as they say, we’re walking the walk, too. Well, sort of.

* * *

Not every test I had during my childhood involved needles and pain. Sometimes the tests were just very odd. One time, when I was around 14, I was summoned back to the National Hospital for Neurology and Neurosurgery in Queen Square, London, where they wanted to glue a load of electrodes to my head, which would then be connected to a large machine. Naturally, by now, I was wary of anything that anyone in a white coat did, so it took the doctor some time to convince me not only that he wasn’t going to kill me but also that there wouldn’t be any pain involved.

‘You won’t feel a thing,’ he kept telling me. ‘You can’t. Because brains can’t feel pain – did you know that? All that’s going to happen is that the machine is going to read all the messages that your optic nerve sends to it.’

Which sounded worrying in itself, but I had no choice other than to go along with it, and sat patiently while he prepared me for his investigations. First he used a chinagraph pencil and a tape measure to make marks on my scalp where the electrodes needed to go. He followed this up with globs of glue, to which he stuck small white discs, to which he then connected a load of wires. These wires, around a dozen of them (one for every disc), were connected to a large (and I do mean large) metal cabinet, the front of which was a sea of lights, dials, switches and oscilloscopes, none of which, he hastened to add – once I was finally connected to it, and frankly terrified – were out to do me any harm.

The only harm done that day was to my sanity. I had to stare at a moving dot in the middle of a chequered board, and that was it. Nothing else. For an hour. I’ve never sat and watched paint dry, but I imagine the two are similar. Certainly my dad, who was supposed to be there for moral support, soon closed his eyes and had a sneaky 40 winks.

But as with any kid, there was a feeling that was much worse than boredom, and I was about to have my first taste of it: acute embarrassment. With the first test done and my cables detached from the machine, we were instructed to go off and get some lunch, before returning for some more tests in the afternoon. It was summer, I recall, and with no facilities on the premises, Dad decided the best thing would be to go and get something to eat at the pub on the nearby square and, as the sun was shining, to sit outside. Which was all well and good, except that with my bunch of cables – temporarily bound and now neatly taped to my shoulder – I still looked like something from a science fiction movie. And a scary one, if the stares I attracted were anything to go by, which seems a bit harsh, in hindsight, considering they were probably all nurses and doctors and must have been used to such sights. My humiliation only subsided when I saw another boy walk by and noticed that he had the same bunch of cables glued to his head. Had we been older, perhaps we would have shared a sympathetic exchange of nods. As it was, I could only count myself the lucky one, because he had it worse: he was in a dressing gown as well.

But not all my experiences of hospital were negative. While most of them involved pain, stress or ritual humiliation, sometimes they were actually very joyful. By the time I was 16 my brother Mark was into motorbikes, as were his mates, and when I was an inmate in the hospital for some more tedious tests a while later, a bunch of them decided to come and visit me. I was up on the second floor, but even so, you could hear them arriving before you could see them and the sound of them parking was fantastic, just like a fusillade. I looked out and there they all were, leather clad and looking impossibly cool. I couldn’t have been more thrilled to see them.

Even nicer was the reaction of the nurses and other patients, when they saw the six young men in biker gear striding down the ward. No one could say anything, of course, but their faces were a picture. When they all left – having been perfectly polite, and not outstaying their welcome – I rushed to the window again, to see them roar off as one. I felt so proud, and so subversive, that I thought I’d burst.

16 February 2012

Breaking news: The jigsaw has landed!

Though, to be honest, it’s not the one we’d originally planned on doing. The original, as per my list, was a whopping 5,000-piece job, which we’d borrowed from our friend June Pereira. It was a fine art image, which came with the rather grand title of The Archduke Leopold Wilhelm in his Picture Gallery in Brussels. It looked complicated – which, in jigsaw-land, actually made it easier: the more complex the picture in terms of shapes and tones and colour, the less likely it is to drive you to insanity. It’s the seascapes and landscapes that really vex the committed jigsaw fanatic, which I am not. So it was a no-brainer in that sense.

But I could tell right away that it was going to be impossible: not because it was too hard, even if Ellie found it a little fusty, but because I hadn’t factored in the sheer size of it. It was enormous! Not only would it not fit on the designated coffee table; it wouldn’t fit on the dining table, either, and that was assuming that we’d be happy – which Lisa obviously wasn’t – to have the table out of commission till the thing was finished.

In the end, Ellie and I opted for a 1,000-piece puzzle: a montage of famous steam engines (the Flying Scotsman and the Mallard, among others) which we think Lisa might have bought me years ago and which, as yet unopened, was gathering dust and cobwebs in the loft. And though it was no closer than poor old Leopold to her favoured subject areas of One Direction, One Direction and … let me see now … One Direction, Ellie pronounced it an acceptable replacement.

Doing the jigsaw is one of my more specifically CMT-targeted challenges; and not just for me but for Ellie, too. With CMT it’s not just the lower limb muscle groups that are affected. It attacks the muscles of the arms and hands as well. This obviously has enormous implications for dexterity, and for both Ellie and me muscle wastage, and the accompanying loss of strength, mean our fingers can’t do the things most people take for granted, such as unscrewing bottle tops or lifting heavy items like saucepans, or even something as simple as picking up something off the floor after losing grip on it. For me, with decades of practice at trying to find solutions, it’s all about maintaining independence. Not being able to tie my own laces or put socks on or do up my top shirt button are all things that I have grown to accept are going to be beyond me on some days, because the weakness varies enormously day to day. But I’ve found solutions – electric can opener, electric jar opener, button doer-upper. Sometimes I just work out different ways to do things without any adaptations or devices. It definitely helps focus the mind on what I can do.

For Ellie, though, just starting out on the same journey, the challenges are still exactly that: challenging. We are incredibly lucky in that her school makes every effort to include her in all activities, but she still has to find ways of doing what others can and she can’t. Her dexterity, though better than mine, is already causing her problems, and she’s on the road, just as I was, of having to come to terms with the inevitable: that it’ll be a process of continual deterioration. She is already having to learn to do all her writing on a keyboard – something that’s perhaps not such a problem as it was back in my day, as kids these days, after all, are so competent with computers – but, as with so many things that she can’t do but the rest of her peer group take for granted, it obviously marks her out, and that frustrates her.

As will this jigsaw, I don’t doubt! It’ll frustrate us both. And it’s meant to, since it relies on the ability to pick up really tiny pieces and then slot them into very precise places. Daunting, but, as I hope to prove to Ellie, still achievable. It will just take time and commitment and lots of patience, and at the end of it, boy, will we both feel proud.

But even if we don’t – even if, in the end, it defeats us – Ellie will still have learned a very valuable lesson: that it’s all about giving things a go, having a stab at them. That’s the key to having an exciting and experience-filled life.

Tonight being a Sunday night we decide to get stuck into it, while Lisa is in the kitchen ironing school clothes for Monday morning and Matt and Amy are occupying themselves upstairs.

‘Let’s see who can find the most edges the quickest, shall we?’ I challenge Ellie, as we sit down together on the floor by the coffee table.

I say ‘sit’ but that probably gives the wrong impression. What I actually have to do if I want to be anywhere lower than my wheelchair is ‘transfer’ from it – which all sounds very measured and controlled. Which, of course it is. What I like to call ‘controlled falling’. So I whump down, and immediately see a tactical error: I’m going to have to do this every single time we work on it, since the coffee table is too low for me to do anything from my chair.

But so be it. It’s either that or relocate back to the dining table, and now we’ve started … And, hey, it won’t be for long.

It’s already dark outside, the remaining snow a silvery carpet in the back garden, and sitting here with Ellie, the two of us working at a shared endeavour, feels exactly the right sort of thing to be doing. Something to keep us occupied for the few remaining weeks till spring comes along. And I don’t doubt, looking at the box, that it will take us all of that.

‘Dad, I will, of course,’ Ellie says with conviction.