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The 50 List – A Father’s Heartfelt Message to his Daughter: Anything Is Possible
* * *
Despite us having very little materially then, compared to today’s festive excesses, it really did feel like a time of plenty. It was a time when not only did the dustmen get a crate of brown ale from Dad, as an annual thank you, but also the entire contents of the drinks cabinet (actually the sideboard) were brought out on top, dusted off and arranged, like a help-yourself bar at a wedding reception. It was a time of corner-to-corner paper streamers in the living room and glittering skeins of tinsel for the tree. Which was, of course, a real one.
The presents done – a military exercise, involving four piles, four anxious children and then one unholy scramble – we children would accompany Dad, playing family postman, delivering gifts to all our relatives while Mum got on with lunch. And what a lunch it was, because Mum was a fantastic cook, and made the best onion bread sauce on the planet, bar none.
The drink of choice on Christmas Day chez the Hollands was Pomagne. A poor man’s champagne, made from cider, it felt like the height of sophistication – or would have, had Dad been more adept at handling it. It was always a tense moment when he attempted to get the cork out, ever since the year when it flew out, headed for the ceiling at great velocity, came back down and landed in the gravy boat, propelling most of its contents all over my brother Mark.
Lunch over – and perhaps as a result of the Pomagne – Mum would always tell her annual Christmas joke. Which was a pretty ropey one, but, in keeping with the spirit of the occasion, we didn’t care: we’d roll about at every telling.
Mum: ‘What did the elephant say when the mouse ran up its trunk?’
Us: ‘We don’t know. What did the elephant say when the mouse ran up its trunk?’
Mum (pinching her nose hard together with her thumb and forefinger and speaking in a squeaky voice): ‘Hmm! I suppose you think that’s funny!’
You’re right. You probably had to be there.
But for all the joy of my childhood, it wasn’t without its worries. Though I was unaware of it, my parents were becoming anxious about me. I must have been around three or four when they first started noticing problems with my toes. They would curl up every time I tried to put my feet into my wellington boots. I was OK with shoes and sandals, but there was something about the angle your foot is at when you feed it into a wellington boot that gave me problems. Once my toes were inside, I couldn’t seem to straighten them out by myself. My parents also noticed that my gait wasn’t quite natural; I would walk in a way that perhaps I would today describe as ‘hopeful’, flicking my lower legs forward, rather than placing them as you would normally, in the hope that the heel would hit the ground before the toes did. If the latter happened (and as I grew, this became more and more evident), the result – flat on my face – sure wasn’t pretty.
I had no idea how much this concerned them, obviously. My toes did what they did, and my gait was what it was. I felt no frustration about any of this; I just worked around it. I was only little, after all. I knew no different.
I had other things on my mind, in any case. While Mum and Dad tried to rationalize their concerns by saying my problems were just part of me ‘growing up’, I was much more concerned with that other big growing-up thing: not being a baby any more, I couldn’t wait to start school. With two big brothers already there, I was aching to join the party. I didn’t want to be stuck at home with only my little sister for company; I wanted to be where the big boys were.
When my brother Gary announced one morning that today was the day, my excitement at going knew no bounds. But I was destined for disappointment. The first disappointment was the news, once we arrived there, that I wouldn’t be joining my big brothers in the junior school as I’d expected. I would have to go elsewhere – well, a whole playground away, anyway – as I was only old enough, apparently, to join the infants. The second disappointment was that as soon as Mum left, all my confidence went scuttling away with her. Within the space of a few hours I’d had all the stuffing knocked out of me; I felt anxious, alone and very lost.
Thankfully, the feeling didn’t last. In fact, another revelation was that the business of making friends there was unexpectedly straightforward, and seemed to consist of the simplest of exchanges.
‘This your first day?’ a boy said.
‘Yes,’ came my mumble.
‘OK. Wanna play football?’
Job done.
Best of all was that it seemed to work with almost everyone (bar the girls, of course). You played football with someone and you had a friend for the rest of your natural life. Or at least for the immediate future, till the bell went, which, as with any four-year-old, was as far ahead as I generally thought.
But the problems with my curling toes weren’t going away and had now started to impact on my getting dressed for school. It had begun to take me so long that Mum even began stressing that I’d become phobic about going for some reason.
Nothing could have been further from the truth. I loved school. But certain aspects of it were becoming more challenging for me, clearly. And though, once again, I wasn’t really aware of this myself, my parents became increasingly concerned. Their concern mostly centred on my gait. I didn’t walk like my siblings and no one knew why – and my gait definitely wasn’t getting better. After a couple of months of this, my mother made her mind up: she would take me to the local clinic to see a doctor.
I still remember my incomprehension about this visit. I wasn’t feeling sick, and nor did I have a sore throat or a rash, but even so, I was being taken out of lessons. Why was that? I was no less confused when we got there and the doctor immediately took off my shoes and socks and began tapping my ankles with a little rubber hammer.
But it was my mum who was most confused when, the foot inspection over, the doctor turned his attention to my arms and hands. She was just about to ask him what my hands had to do with anything when he let out a loud and alarming ‘Hmmmm …’
‘What?’ asked Mum anxiously.
‘Hmmm …’ said the doc again. ‘I think young Nigel here needs to go and see a specialist.’
He then began talking over my head, to my mum, while she helped me put my shoes and socks back on. I didn’t understand much of what he was saying – though I soon would – but the gist of it seemed clear: ‘I don’t actually have a clue what’s wrong with your son, Mrs Holland, so I’ll pack him off to someone who might.’
On the way home, feeling as you do after a visit to the doctor (a little bit relieved, a lot brave, a tad martyred), I hoped – even expected – that there might be something in it for me. A small toy perhaps, a bag of sweets, a penny lollipop. But I got nothing. Mum was never one for over-indulging her kids. I got deposited straight back at school.
FEBRUARY
8 February 2012
Number of inches of snow dumped on Wellingborough in January: Easy – more than enough to prevent me from getting out.
Ergo, number of challenges so far completed: Still 0.
However, number of challenges attempted today (finally): 1 – ‘Donate blood.’
But number of challenges actually completed today: Another big fat 0. Oh, and I also got wet.
Well, that was a great start, I don’t think. You might have noticed that, despite a flurry of early enthusiasm and activity, there is nothing recorded here for January. Which is because nothing actually happened in January. Yup, that’s correct. Nothing whatsoever. Yes, we ate, slept and did all the day-to-day things that needed doing, but in terms of My Big Important Project, not a thing.
I know I shouldn’t beat myself up too much. The bottom line is that wheelchairs and snow do not mix – unless you count regularly landing on your own bottom line among your list of favourite pastimes. And it’s not as if I haven’t been getting things under way, making phone calls, sending emails and doing research.
But I’m frustrated because apart from signing up for the half marathon (which does not mean actually doing it, of course, however many training laps I put in before Christmas), becoming a blood donor was to have been pretty much my first completed challenge, and the one I was most keen to get over with.
Except I haven’t got it over with. Which is infuriating, as the day began so positively. Well, I say positively, but there wasn’t really anything positive about it. Just naked fear. Because actually I was terrified.
‘So why are you doing it, then, Dad?’ Ellie wanted to know. It was a reasonable enough question. Though I was pretty sure that by now she understood the concept of the list and why I was doing it, I wasn’t so sure she’d embraced the idea that it might include doing things I didn’t want to do.
We were all finishing breakfast, before the kids left for school. Though I say ‘we’, I couldn’t eat a thing, because I was off to become a blood donor in less than an hour, the thought of which had completely robbed me of my appetite.
‘Because I’m confronting my fears,’ I said, probably rather grandly, in an attempt, as much as anything, to psyche myself up for it. ‘That’s what you do,’ I went on. ‘That’s what makes it a challenge. That it’s difficult is really the whole point. If it was easy for me, it wouldn’t be challenging, would it? If it was Mum doing it, say,’ (Lisa’s a long-term blood donor) ‘it would be easy. But because I have a phobia –’
Ellie looked confused now. ‘What’s a phobia?’
‘An irrational fear,’ Matt supplied. ‘Like when you’re really scared of snakes or spiders –’
‘There is nothing irrational about being scared of snakes and spiders,’ Amy chipped in. ‘Not if they’re cobras or rattlesnakes or black widows or something …’
‘And yours is needles?’ Ellie asked. ‘Needles being poked in your arm?’ She demonstrated on herself for me. ‘And then sucking all your blood out …’ she added, warming to the idea now. ‘A bit like they’re vampires?’
Which wasn’t the best image to be starting the day with, frankly. Twilight has an awful lot to answer for.
‘Not like vampires,’ said Lisa, presumably seeing I was turning green now. ‘Nothing at all like vampires, in fact. No, it’s done by nurses, and they’re very, very gentle. Dad will hardly feel a thing, because they’re also very good at it …’
But still a lot like vampires, even so.
* * *
It’s not surprising that I have a phobia of needles. From the age of five, and throughout my childhood, they were coming at me from all angles.
My first foray into a world that would become painfully familiar happened just a few weeks after my visit to the GP, when a letter arrived requesting my presence at an appointment that had been made for me at Guy’s Hospital in London.
Being so small still, I didn’t have much idea what was happening. Though I’m sure Mum and Dad told me, I have no memory of making a connection between my bendy toes and the trip to the big city. Going to London was, and would continue to be, synonymous with only one thing for me: a trip to go and visit my Auntie Betty.
My aunt and uncle lived in a sprawling housing estate just off Abbey Road, and I’d go and stay with them at least once every summer. I loved going to visit Auntie Betty and Uncle Gerry. Together they ran a successful stock car racing team, which made them terribly exciting to be with. They would travel all around the country, to race their car in the national championships, and we’d set off to whichever venue we were headed for in an enormous coach that they’d converted from the standard passenger variety into something that, in its day, would not have seemed out of place in a Formula 1 paddock. It carried the stock car on the back and the inside had been adapted so that we could not only sit in it but also sleep in it.
Trips to Auntie Betty’s were the genesis of what would become a lifelong passion for motorsport, and from a very early age, one of the highlights of travelling to London was the point when we’d go through a long tunnel on the A4, and I got that tingle of anticipation, knowing we’d soon be there.
This was different, though. And the big difference that sticks in my mind was that rather than end up at Auntie Betty’s, as usual, we arrived at a scary place, full of incredibly high buildings. In reality not so enormous – hardly the Manhattan skyline – but to little me, they seemed so tall that they blocked out the sun. There was noise, too – so much noise. So many car engines, and bus engines – so many horns blaring all at once, as if all the traffic on the roads was really angry.
And barking. I clearly recall the noise of dogs barking. Strange, looking back – we were nowhere near Battersea – but that’s always stuck in my mind.
I also have a vivid mental picture of the inside of the hospital. And an equally clear one of the great men I was about to meet. I had been summoned to see two eminent physicians of the day: a brace of consultants called the McArdle brothers, who were leaders in the field of neuroscience.
My main impression, not surprisingly for those days, was of brown. Unlike the clinically white environments you find in most modern hospitals, the office of the McArdle brothers was a symphony of dark wood: heavy wooden filing cabinets – the contents of each drawer identified with its own white, handwritten label; dark-wood chairs – one for each of them, plus a further three ordinary, dark, school chairs for me, Mum and Dad; and a hefty dark-wood desk with an inlaid leather top. Looking back, the only thing missing from the tableau was a couple of those globe-shaped glass bottles full of brightly coloured water whose function was, and still is, a mystery.
Also in keeping with the fashion of the time, the McArdle brothers – looking rather frightening in their matching white coats – puffed merrily on cigarettes before mounting their attack. I had come to be investigated and they went at it with gusto, putting me through a series of increasingly scary tests. I was prodded and poked, inspected and injected, and at the end of it, the brothers reached their professional conclusion. Mum and Dad had been right: there was definitely something wrong with me. I had some sort of hereditary muscle-wasting condition, apparently, and to be sure they would need to do some tests.
Everything changed for my parents that day. And, looking back, I’m not surprised; it must have come as such a shock. Though the condition was apparently hereditary, there was no history of it in either family, meaning that it must be the result of some random mutant gene.
We returned home, and while I carried on doing all the things little boys did, largely oblivious to my ‘condition’, they could only look on as my muscles became progressively weaker and – having no experience or medical knowledge of what was wrong with me – worry about what the future might hold for me.
Not that my childhood, from that day, was really normal. Though Mum and Dad never allowed me to dwell on whatever it was that was causing my problems (if I became tired after playing, then I rested, but they never stopped me doing anything), it increasingly impacted on my life. This was mostly because life began to be punctuated by interruptions: an endless round of hospital visits, while they tried to better understand what was causing my symptoms. There was obviously no choice but to put up with it all, but hospitals – and everything that seemed to happen within them – soon became the bane of my life. I disliked all of it – in fact, ‘dread’ probably isn’t too strong a word here. What child wants to be in and out of hospital, dragged away from his friends and whatever fun things they might be up to? I particularly hated the seemingly endless in-patient visits to the Hillingdon Hospital and the National Hospital for Neurology and Neurosurgery in Queen Square. Both places soon filled me with anxiety and fear. And much of the reason for that was that I soon learned I couldn’t trust them. They would say one thing – normally a nice, reassuring thing – and then the exact opposite would happen.
A particularly grim time was at the hospital in Queen Square, where, aged seven, I had to have some nerve induction tests. These tests, which I had to have a number of times, involved an electrode being attached to my ankle, and a needle, with a wire attached, put into my thigh. They would then pass a small electric current through the electrode, so that they could assess the strength of the signal in my peripheral nerves by picking up the signal in the wire.
I think I sort of understood why they needed to do it, but what I never got my head around was what they said every time.
‘Now, Nigel, this won’t hurt,’ they’d confidently assure me. ‘All that will happen is that your leg muscle will sort of “jump”.’
Which it duly did. But what I never seemed to be able to get across to them (and how nice it is to be able to make this point here) was that it was my leg, and actually it did hurt!
As I was so young, and an ‘inmate’, which was sort of how it worked back then, the doctors would gather around my bed and talk over me and about me, and, without my parents around to explain what was happening, my only source of information about what horrors might be inflicted next came by way of updates from the nurses after the ward rounds.
‘They’re going to take you to occupational therapy,’ I remember one telling me during one stay, ‘to be assessed,’ she finished mysteriously. It meant absolutely nothing. What on earth was ‘occupational therapy?’ I could hardly pronounce it, and like all the other unpronounceable words they bandied about, I didn’t like the sound of it one bit.
‘What are they going to do to me?’ I wanted to know. ‘Does it involve “tests”?’
‘Tests’ was a word I could pronounce, but I was anxious about them too. Because experience had taught me that tests almost always seemed to involve needles in some way. ‘No, not at all,’ she replied. ‘Really. It’s nothing to worry about, Nigel.’
But her reassurance, helpful though it was, was short-lived. ‘And after that,’ she added quickly (presumably thinking that if she slipped it in I might not notice), ‘they’re going to take you off to have a lumbar punch.’
This was a new one. And one that I definitely didn’t like the sound of. As soon as the nurse elaborated, I was terrified. OK, so it turned out that it didn’t involve being punched by a tree trunk, but what it did involve – in essence, being punctured by an extremely large needle – sounded even more terrifying. A lumbar puncture is when a needle is inserted into your spinal cord and a small amount of spinal fluid drawn off. And as I lay on the bed, curled into a tight ball – knees to chest, as instructed – I was as petrified of that needle as I could be.
‘All over soon,’ the nurse kept saying, patting my head.
‘And you won’t feel a thing,’ the doctor helpfully reassured me, ‘because I’m going to anaesthetize the area first.’ And, to give him his due, on this occasion he was right. Apart from the initial prick – which obviously I did feel – I felt absolutely nothing, and the only bad bit was afterwards when I had to lie on my back for 24 hours, while enduring the worst headache of my young life.
Much worse, in terms of my increasing phobia, was the endless round of blood tests I seemed to have at Hillingdon Hospital, which was staffed by a rogue gang of vampire medics – it must have been, because harvesting my blood seemed to be a favourite pastime. Looking back, I suppose their fascination with looking at it was for a valid reason: I had an extremely rare disease, which they were researching all the time, and I made an excellent guinea pig and pin cushion.
When I was growing up, little was known about CMT. It affects some 23,000 people in the UK and research into it was a vital step in the process of learning how to manage its manifestations. These are many: foot drop, chronic tiredness, bone abnormalities, muscle atrophy, balance issues, loss of dexterity, fatigue and chronic pain. Though I didn’t know all this as a little boy, obviously, I still felt I had to agree to being a guinea pig. Saying no wasn’t an option – not if I wanted to better deal with my disease. The doctors and scientists needed to know about it and, more importantly, so did Mum and Dad.
My poor parents. While as a child I had to deal with its many inconveniences, they had the unenviable task of steering me through a childhood and adolescence knowing that my nerve function would gradually deteriorate and that I’d more than likely end up with a major disability. They had to cope with the knowledge of what might be ahead for me.
But it was hard to be that guinea pig, however much I knew I had to. The medics took blood from me at any opportunity they got, and with every needle they stuck into my arms, my fear grew – so much so that one day it took three nurses and a doctor to hold me down, so that they could get their standard inch of glistening fluid. ‘Well done!’ they’d say. ‘There we are! That didn’t hurt at all, did it?’
Erm, yes. Yes it did hurt. A lot.
And it didn’t just hurt: it became a source of constant anxiety. Like any other child, I loved my parents and wanted to please them. They were trying to make sense of something no one understood, and naturally – and quite rightly – put their trust in the doctors and scientists who were just starting to get to grips with what CMT was. And having me as a real-life case study (either willing or unwilling) was a central part of amassing the vital information that would, everyone hoped, make my life less challenging. So I would never dream of criticizing my parents for the years of investigations I had to go through. They were doing their best for me. They never did anything less than their best for me. Just as Lisa and I want to do our very best for Ellie. Though thank goodness she’s been born into another time.
* * *
The kids duly dispatched to their various places of learning, Lisa and I cleared the kitchen and then headed into Welling-borough, to the church hall where I had my date with destiny.
Apart from the constant nausea, the sweating palms and the gnawing terror, I was actually feeling quite well prepared. I had done my research. I’d often read about the whole ‘confront your fears’ approach to dealing with a phobia, and had been impressed by the case studies of chronic arachnophobics who, after doing just that, had been completely transformed and would let tarantulas skip merrily along their arms. Encouraged, I’d been for a browse on the NHS website, and, having chatted on the phone to a very helpful lady about the process, and having also covered the potential complications of my disability, I had already registered as a first-time donor.
Today, then, was the culmination of a serious purpose. After all, this wasn’t just about ticking an item off a list. It was about doing it for that warm glow of pride in an achievement – to enjoy the thought that my blood would be going to help someone somewhere; I’d confront my fear and I’d do good. What better example could there be for Ellie?
Even so, as we pulled up outside the church where the mobile service was, all I could think of was how fervently I wanted to just get in, give the blood and then get the hell out of there.