This tale begins and ends with goats. It was last June in Wales that I got the first hint of what was so rapidly to follow. I was sating the passion of Lover Boy for banana skins (this goat gets his name from a monkey in Grenada who, when summoned, would swing from the rainforest and raid trouser pockets for bananas - if you are a man, it's just as well to have one handy). Feeding Lover Boy I noticed a slight numbness and tingling in my fingers. Within hours it had extended to my toes and began to move up my feet; the sensation you get after you have been lying awkwardly on a limb and it goes to sleep.
The next day, driving to London, I noticed that when I looked to the right there were two unaligned images. That settled it. Next morning found me in my GP's waiting room, my mind in overdrive. Having once worked in a hospital, I knew enough about medicine to start conjuring up images of MS and brainstem tumours. My doctor, usually the personification of reassurance, was unreassuringly concerned to find an immediate confirmation of my double vision: "Goodness, your left pupil is considerably larger than your right. It's off to the neurologist with you."
Within hours, I was lying on an examination couch and where earlier at the GP my responses to the patella hammer (that hard plastic disc atop a knitting needle) were sluggish, they were now non-existent. A sharp knock to my knees and ankles produced not even the slightest tremor of reflex. This was what you might expect from severe nerve damage.
I told the neurologist my tale; how I had had quite a busy spring, having travelled to Australia, America, Germany and France, all within a few weeks (for contemporary composers, performances tend to be like buses; nothing doing and then a group all turn up together). Could it be something I picked up, perhaps on that brief stopover in Shanghai? My only recent illness had been a bad cold two weeks before, contracted after a swim in the sea at Aldeburgh.
"I am pretty certain about what you have, Mr Berkeley," the consultant neurologist said. "It's quite rare, but we see it from time to time: peripheral polyneuritis, and the only aspect of your recent history that is probably germane is your recent cold." This mysterious affliction of the nervous system is sparked by the kind of virus you might have with a cold. The immune system misreads the information and, thinking it is protecting the body, attacks the myelin sheath of the nerves. It is similar to the effects of multiple sclerosis but crucially, unlike MS, you usually recover, even if the onset of the symptoms is more swift and dramatic.
More good news was to follow: "With any luck, yours will prove to be a mild case, but you will almost certainly get worse before you get better." I would have to be carefully monitored as with some variations of the disease, sufferers have to be put on a ventilator and have their blood filtered. Still, I left the clinic feeling huge relief that the worst excesses of my imagination had not been realised.
But from then on life became something of a discovery. If, in adversity, you can find a place of peace from which to stop and look out, there are extraordinary revelations - as in composition, restriction can become liberating. For a musician, touch is everything. I began to think of Jaqueline Du Pré, who succumbed to MS at the apex of her career, and to wonder if what I was feeling, or rather not feeling, in my fingers had been similar to what she experienced. For not only was there numbness but also misdirection: soft materials such as tissues felt rough and abrasive, heavy towels seemed like cotton wool or silk. What must it have been like for Jackie to gradually find she could no longer gauge the pressure she was exerting when she tried to stop a string; to find that the nerves were no longer able to convey from the brain to the muscles the messages that we so take for granted? It is as though the insulation on an electric cable is damaged, shorting the circuitry. In music, precise signals are honed to the most subtle nuances imaginable, to a point where, with a cellist of Du Pré's gifts, it is exactly that minute gradation between the stated and the sublimely inflected that allows us to recognise something indescribable and great.
Playing the piano became painful and even clumsier than usual. Not just wrong notes, but unintended discords as I hit two or three keys per finger. I would spill things because the sensory and spatial perception in my fingers and eyes was unreliable; aiming a kettle at a cup became something of a lottery. Despite the double vision, which had become more central, I hoped I could continue to compose, but my writing became unreadable and even the keys of a computer made the tips of the fingers sore.
Then there was the utter lack of energy. I developed a paralysis in my left arm and ankle that meant I walked with a slight drag, as though I had had a stroke (although my consultant enjoyed pointing out that what I was doing with my leg was the precise reverse of the stroke victim). For someone used to walking several miles a day, the fact that 20 yards would exhaust me made me realise why muscular atrophy can be a real and debilitating side-effect of this illness.
The most painful manifestation came every night in the small hours, when I would wake with an excruciating burning sensation in my side. I am pretty sure this was referred pain, but it was at the point where several nerves meet. Nothing seemed to assuage this particular demon and I only learned later that there are now painkillers that can target it. So I was reduced to wandering around the house trying to distract myself from the needles of Diabolus. During these nightly sessions I would sometimes panic and imagine that the nerve damage was indeed spreading up through my body to my chest and that my breathing was affected. How night enables and enriches our worst fears.
In order to assess the degree of damage to the myelin I was sent to a specialist in electromyography, who sent an electric current down the nerves and muscles to measure the conductivity. From this and, in particular, the disturbance of vision, he felt certain that I had a particular variant of neuritis called Miller Fisher syndrome. This cultivated and musical man was a mine of fascinating information and, as he shot another few volts up my arm, he told me how he was constantly reminding his students of the miracle that is the human body and how amazingly reliable it is most of the time. Just the physiological set of happenings that go into the most mundane act (brushing your teeth, for example) beggar belief. Marry those mechanical impulses to the abstract notion of musical interpretation and you can barely conceive the complexity of impulse and process at work.
Mentally, I found myself more and more adopting a rather Buddhist approach to life. If, as a rather impatient "doer", you have to accept limitation in order to get better, then anything that tempers your natural compulsiveness is rather useful. So I deliberately opened myself, with varying degrees of success, to the possibilities of acupuncture, reiki and even psychic healing. The musical result of this revised mindset was a reversion to simplicity and some of the most direct and uncluttered music I have composed.
Travelling was, and still is, particularly fatiguing and it so happened that a month after the onset of the illness I had a big new piece at the Proms, but since the orchestra was the BBC National Orchestra of Wales, rehearsals were in Cardiff. In the event, I settled for one day and missed the second, something I would never normally do. Simply getting on to the stage of the Royal Albert Hall at the end of the performance required a superhuman effort as the combination of disease and emotion was almost overpowering. With help from the conductor, Richard Hickox, and the BBC I made it, without betraying what was going on inside my body.
It was particularly emotive since the slow movement of my Concerto for Orchestra is a threnody in memory of Jane Attenborough, who I had known and who, along with her daughter and mother-in-law, perished in the tsunami. Jane's family were at the concert, including her husband, Michael and father, Sir Richard, who, though visibly moved, talked about the structure of the piece with perception and gratitude. In its own way, music had momentarily worked its cathartic magic, had acted as a kind of benediction. More than that, however, was the salutary experience of meeting a family whose suffering made my affliction seem utterly insignificant.
Myelin regrows very tardily and my imagination kept me believing I was getting better when, in fact, there was little change. Swimming became a godsend because, with the water supporting my weight, I was at last able to exercise and from that to increase daily my walking target. I am almost back to normal, although the disparate size of my pupils still allows me to invite pretty girls to gaze into my eyes.
Best of all, I have met a doctor and musician who specialises in polyneuritis. If, in another month, I still have symptoms, he will be able to offer the first medicine ever available for this illness. It works by blocking the cells that damage the myelin sheath. What is it? Why, it is serum of goat! Oh Lover Boy, bananas all round.
