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

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СКАЧАТЬ 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.

      And, since she’s probably right, I’m not about to argue. Together we carefully pour the pieces into a heap in the centre, taking care not to let any spill onto the carpet, our dog, Berry (named by Ellie – being the youngest, she got her way there), not being fussy when it comes to unexpected potential food gifts. And yes, cardboard does fall into that category. I don’t get much in the way of further conversation after that as Ellie, being Ellie, is too busy trying to beat me. In only minutes she’s amassed an impressive pile in front of her – a pile that I notice is bigger than my own.

      ‘There,’ she says, as she pushes across a row of four she’s already slotted together, niftily outranking the first corner piece I’ve just unearthed. ‘Can we finish it tonight?’ she adds, lining her handiwork up along her edge of the table. ‘I bet we can, Dad. This is going to be so easy. Easy peasy.’

      ‘That would be great,’ I agree. ‘But I think it might take a little bit longer.’

      Around three weeks, I decide. Three weeks, tops.

      * * *

      As my condition progressed, so did the wastage of the muscles that had prevented my toes СКАЧАТЬ