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

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СКАЧАТЬ 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.

      ‘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 СКАЧАТЬ