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.
The next street was different again. The lively (drunken) city had gone. There were still many people around but they were of a different world. No-one was shouting. No-one was laughing. People were on the floor but they were not squirming about in drunken foolishness. Most of them looked close to death. It was not a long street and I could see its end up ahead. It was something to focus on as the darkening sky increased the sense of doom. I could hear every footstep as we hastened through this ghostly parade. I felt a tightening of the throat. Ice cold threads of perspiration were running down my forehead. Even though we were away from the riotous soldiers, I still felt uneasy. Everyone was watching us. Coming to the end of the road I saw the worst of everything. It was both pitiful and frightening. It made me question my own sense of compassion.
I became aware of a figure perched on a step up ahead to our right. My eyes had been focused on the light at the end of the street but as we came closer, I looked. It was a girl dressed in rags. I say rags because I saw no distinctive clothes on her-just a grey mess. She looked no older than my sister. She was holding a bundle of something close to her. By the time I had reached her, we were staring at each other. She was holding a baby-that bundle I saw was an actual baby.
“Would she sell her baby to the old man with the crooked cart?” The thought was too real to be just a thought. “It must have happened. Mothers would sell their babies so they could feed themselves.” I was annoyed with myself for thinking about it. On television, I had seen a lot of starving malnourished children. There were loads of images splashed all over the news. Charities would advertise for donations showing the faces of poor hungry infants gently crying, whilst a soft voiced narrator pleaded with us:
“What price is a child’s life?” They would ask. It was upsetting to see, but they were just pictures on a screen in the corner of the living room. It was easy to make them disappear with the push of a button. But there was no way I could make this image disappear. The only buttons I had were on my coat. I was going to have to walk past her-close enough for us to touch and smell each other. I was beginning to feel physically sick.
Mother and baby made no sound. She just looked at me. Here I was, in all my Georgian glory, worrying about nothing but myself, while she sat motionless, waiting. Her head turned to watch me go by. I had no idea what she was waiting for. I had no idea if that baby was alive. She seemed doomed to a fate of squalor and starvation. Yet I was there. I saw it but I just walked past. I had done nothing. I cannot describe my feelings of guilt. At school, I had gone out of my way to be kind to those I felt sorry for. But it was nothing. Ryan Green may be an insecure vulnerable young boy but there was no way he was going to starve to death on a street corner in London. His Lordship saw me looking but said nothing. He had been silent throughout this part of our walk.
Last night I stepped into the sunshine of the Paradise Club. The sun blazed a brilliant white. This light let me see everything. I could see honesty and sincerity in the abundance of smiles. People came to me and asked me about my being. I spoke at length of the burdens and worries which once held me back. They had evaporated away into the brightness around me. I was free to laugh without the shackles of satire. The barriers had melted into the joy of my surroundings. Nothing was impossible.
I could move freely without the pain of anxiety. I wasn’t going to fall. I was as light as a feather. I became as generous as my friends. I gave time to listen and share their hopes and fears. I could wipe away tears and give strength to their wishes.
No-one spoke loudly but what they said travelled far. The merging of like minds and intentions was gathering strength. Minute by minute, our collective was growing. We were talking away hate and bitterness. Greed and naked ambition became too insignificant to matter. There was no leader. We were all leaders. The shadows of the past began to emerge. They were met with hindsight and honesty. Every day was a day to learn. I had the joy of a galloping horse feeling the bounce of my hooves across an open field. There were no barriers.
When I awoke this morning I was met with darkness. Where had my light gone? My dream had been euphoric. But now I was back in the morning. And back in my broken body and the uncertainty of a future reliant on an ever diminishing system of social care. Those I had met in the light of my dream were my carers. They cared for me; not the triplicate forms they were chained to. They wanted me to succeed.
But everyone can be like this. We have plenty of time. It only takes an instant to smile and listen. We can all demonstrate our reasons to trust ourselves and show the faith to triumph. Don’t discount or judge people. We can be cautious but open and trusting yet conscious. The collective effort is a long held dream of many. We can all work towards it.
Look at teams; not just the uniformed bodies kicking or hitting their ball around with angry feet and willowy sticks. Look at the co-ordinated efforts in the NHS and the emergency services. Look at their ground workers and their total dedication. Can’t we spread this to the rest of the world?
This morning I ached from the never ending effort of independent movement. My bones creaked as I threw myself into the wheelchair. Oh what a friend it is. Slowly, I cleared the aftermath of the previous night’s indulgence. It was a drink with my old friend. But I cleared it and prepared a day of contentment.
We’ve all been dealt with terrible blows. It’s a brutal life sometimes. But it’s a precious life. We can be like my dream. Let us create a team of trust and generosity. Let us eschew the shallow and embrace the warmth we all have within us.
Thank-you for reading.