One Friday night I was walking back home from the pub. It was 1980 and I didn’t have a care in the world. The devastation of a failed degree and subsequent disintegration of my dreams had given way to a new optimism. I’d found a new direction. I was taking my diploma on the piano and I was taking the opportunity to actually teach it. I was meeting new people of like mind and it was a welcome new income. But on that mild October night I felt a tingle in my legs. It was small but significant enough to be noticed. “Oh,” I thought.” Maybe I’m getting multiple sclerosis.”
I’d been made aware of the condition because one of my cello heroes, Jaqueline Du Pre had seen a brilliant career cut short by this evil condition.
I laughed it off. It was just pins and needles. But then in 1983, I had to see the doctor because I felt all numb down my left hand side. What was my response? Exercise more, push yourself and show the world you’re fit. The rest of the eighties were dotted with similar moments of frustration. I never had a definite answer.
My new direction was exciting however. In 1985 I graduated from the Open University. I was ready for my PGCE and a career in the classroom. Yes, it took another four years to get a place but I was empowered with a new zest for life. I cycled, I swam and I climbed mountains. Watch out teaching profession, here I come.
Then one night in November I was floored. I’d been to see Sam Brown live at Leeds University with my mate Bob. It was a brilliant concert. It was in the big hall but there were no seats.
“Why are my knees wobbly?” I thought. “Can I just please sit down?” For all of my teenage years and beyond, I’d stood up in military fashion at Goodison Park and countless away grounds. Why was I having trouble now? The following week I was taking the dog for a walk. I had to cut it short and backtrack. I flopped down on the sofa. I was worried.
That trivial thought from 1980 was coming back. I am a deep thinker and I could not see any other answer. I had MS. Was I was just about to embark on my chosen career with the great beast of chronic illness at my side? Was it ironic? No, it was tragic. I’d always carried a sense of twisted justice. For me, everything came with conditions. Every silver lining has a cloud. I’d been a good boy, I cared and I worried. I’d shown a bit of sledgehammer wit but I gave time to people. Why was this ruthless incessant bastard grabbing me by the buttocks and shaking me with all the humiliating inhuman symptoms of disability and its mental and physical consequences?
Feelings of hopelessness and inadequacy came to the forefront of my persona. Yes, I’d embarked on my teaching career; it was exciting and fun. But all the time I was going to be carrying the burden of disability. Oh how it crept. By 1995 I couldn’t run any more. The following year my walking struggled after half a mile. The journey to work was still manageable. At half past five every morning, I would fire up my old faithful Fiesta and drive into central London. I loved the school.
In my third year there I was called for tests. One involved a two night stay in hospital for my CSF; that’s a lumbar puncture. It sounds basic but the anticipation was worse than the action. The hospital itself was a miserable wretched place.
It was an old Victorian institution, forbidding and cold. It had imminent closure written all over it. I had a lot of time to stare at the grey blank walls of this ageing desperate ward. It was a quiet ward. Most of the others were like me, wondering and worried about the future. I lay on the bed, digesting this uneasy silence. I traced the outline of the ceiling. There were no fancy edgings or cornices. The plain high walls gave nothing to look forward to. I wondered about the pain, suffering and brutality these silent walls had seen. The floor was flat and cold. Old cast iron radiators stood sentry-like behind the lockers. They gurgled and shook, vainly trying to add some warmth to this place for “affected disorders.”
The staff were rude and cynical. Only the doctor who carried out my procedure showed an appropriate professional level of care. He was young and over-worked. I was glad to be out of there.
I went straight back to school. I had the school Christmas production to organise. In truth I should have taken a week off but I didn’t. I came out of the hospital at one fifteen and I was back in school directing the production at two ten. I did it from the piano.
Now there’s another story. In 1980 I’d gained an LTCL. I could play anything. I could sight read most things. But over time my left hand has turned into a block of over weight insignificant bit of body mass. In 1986 I was practising some Bach. It was the courante from the English Suite number six. There was a florid passage of rapid semi-quavers for both hands. Despite all my experience and practice I had no idea why I couldn’t nail it. I used to trust my left hand but now I found it stopping for no apparent reason.
The whole of my left hand side is like that now. I can’t play the piano any more. But I can listen and feel. I even sense the vibrations. I still love music. I know the language.
Some years ago I was featured in a Radio 3 phone in. I was telling them about a significant piece of music. That morning the consultant gave me the official diagnosis of MS. I was driving the eight miles to tell my good friend Steve. The sun was shining and on the radio I heard the prelude and fugue in A major by Shostakovitch. Music still ruled.
The physical impact of my condition has been huge. What I didn’t expect was the affect on my mental health. I had a propensity for becoming bitter and twisted. I felt such injustice. I was surrounded by fit able people. Some of these people were moaners. They would complain of their own fatigue and injustices. Some were just lazy. The idea of a winter’s day walk in the wind and rain was becoming a dream. Yet I knew people who would demonstrate enormous offence at getting their hair wet. At work I remained silent about my condition; until it was too obvious.
I’d had years of sleepless night worrying about letting people down. My predecessor had been forced to retire early through MS. I was understandably reluctant to be open about my own problems.
“But you’ve proved so much already,” the head said to me. She took me off playground duty. School trips were a thing of the past.
I then started to open up to the rest of the staff. Then to the children and their parents. It didn’t matter. No-one thought any less of me. In fact there was a lot of encouragement. I was touched. Even in my last year when it was obvious I couldn’t go on, I was supported and encouraged by children and parents alike.
Unfortunately I was beginning to feel ostracised by some of my colleagues. Teaching was changing. The warm sense of community was disappearing under the burden of administration and expectation. Some seemed resentful of my privileged status. On the surface there were measures in place for constructive support between colleagues. But the spectre of accountability ruled by an over-detailed system of assessment and pupil tracking was growing more divisive by the day.
My older long term work mates were showing the strain. We still sympathised and supported but from long distance. My once busy lunchtimes were now being taken over by the pressing need to sit, eat and recover. The afternoons needed extra mental resilience. Yet it was difficult to even stand up, let alone take on the mantle of classroom leader and bravely tackle my way through worried and fractious children bringing their playground feuds back into the classroom with them.
I managed twenty two years of teaching. Every day the dark shadow of disability crept into my conscience. At the end, it had stopped creeping. It was a permanent resident. I’m sure it followed me around pulling tongues and sticking its fingers up behind my back. Every so often I think I saw it in the mirror showing its obscene features just behind my left shoulder.
What do you do? All you can do is keep going. I now carry some sense of defiance. I’m surrounded by helpful technology, helpful professionals and helpful friends. I have to think that progress is possible. Now matter how or why, I have to see hope in the future. I’m not going to live my life just picking up scraps.
Thank-you for reading.