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