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

‘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.

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.