The Universe within ME
Every day is a challenge…
I tilted my neck back slightly to rest my head on the back of the bench and soaked up the watery February sun. It seeped rapidly through my body, running down my arteries and veins like liquid mercury. I stood up and passed out.
I remember the school calling my mother – an unheard-of occurrence. I remember my father coming to collect me. I remember I was 15 years old. I remember I never went back.
Now it’s 2020 and that was 50 years ago. I was due to take my incredibly important exams, go into the sixth form and then to university, like my sister before me. A life just beginning ended that day.
At that time no allowances were made for illness. ‘Glandular Fever? You should be over it by now.’ I wasn't allowed to go back to school – no concessions there. After five years of hard slog at grammar school, I had no review of my work or estimated results, despite the fact that at that time there was nothing available for those shameful people who had no O-levels under their belts. So I left school with no exams, no prospects, no future, no self-worth, no energy and no hope.
I also had no ability to study or work. There were no benefits, no support groups, no diagnosis, no treatment, no empathy, no internet and no cure. I was isolated, alone and bad. Very bad. Because there was ‘nothing’ wrong with me. Nothing.
My body had changed and I was suddenly fat. My dad used to say I changed shape overnight, which I did, and I never changed back. I used to play sport at school: hockey, tennis and athletics. I used to swim. At weekends I rode horses and mucked out stables. I had just begun to meet up with friends after school. We would go to the youth club, play music, dance, then dance some more and meet boys. Now I sat in an armchair and got fatter and ‘lazier’.
My parents in despair sent me back to my GP. ‘There's nothing wrong with you,’ he said sternly. And I believed him. So did everyone else. I was sooo bad.
He sent me to the local mental hospital. I had to catch the bus on my own. It was ten miles away up a steep hill – I had to walk up that hill. Inside was Victorian and dark and scary and people wandered the corridors muttering and dribbling. I had to see a psychologist. I went six times and it nearly killed me. At the end, the psychologist said she did not believe I was mentally ill; I can never thank her enough. I believed her although no one else did and nothing changed.
My dad had lung cancer. He was properly ill, not like me. I adored him; he was worried about me and I felt bad. He died and I was still alive, in theory.
From that day sitting on the bench until today, every day has been a challenge. It took nearly 35 years before I realised, through the internet, that there were other people out there like me. I was always told I was odd, an enigma, mentally challenged, lazy, pathetic, different, overly dramatic, frustrating and bad. And that was from the medical profession. I was a leper to the medics and subsequently was sent to my own ‘island’ to rot.
And from that island I watched the world go by in boats. They were having fun, the people on those boats. They were sunbathing and singing, working, dancing and seeing the world.
I saw them swing through the sixties and rock through the seventies. I watched as they got fit in the eighties and banked their money in the nineties. I smiled as they were naughty in the noughties and then got confused in the teens. I witnessed it all. Sometimes I tried to join them. I paddled my tiny raft out to meet them, climbing the waves till I was sick, dragged down by lead weights round my ankles and arms, crushed by the heat of the sun, and drenched by the relentless rain. My throat would swell and I would sweat with the fatigue and the people in the boats would laugh and shout, ‘Come join us, put some effort into it, you’re not even trying, you will enjoy it when you get here.’ But they didn't help me, because of course, there was nothing wrong with me. Nothing. I was just bad and very lazy.
Sometimes I got aboard the boat. But I didn't enjoy it. I endured it. I collapsed on that deck, feeling the nauseating swell of the sea and the atomic light from the sun, and their laughter stabbed my ears like the drill of the dentist pressing on a nerve. I longed to join in but longed more to get back to my island. Catch-22…
And yet as the years went by, I began to notice storm clouds over the boats. When I peered through the portholes I saw my friends arguing and crying. Some got divorced, some got ill and died, some grieved the loss of a partner (or worse their children) and some jumped overboard. Some got anxious and some got rich, but they all struggled. Some drank too much, some took drugs. Some travelled but then came home. In the end, they all felt their ultimate aloneness.
And I realised that life in the boat was a fantasy that I had mistakenly thought was true, because I was so young when I got sick, I knew nothing of the world expect for Love Story and Disney.
It turns out that even people with good health find themselves isolated, frustrated, not good enough, frightened and grieving. Maybe not all the time when they are drunkenly distracted by the orchestra but definitely when they hit that iceberg. No one can save them or any of us; we have to find that safe place, our worthiness, within us.
So I am not bad and I am not mad. And neither are they and neither are you. You who suffer this hideous dysfunctional, unrecognised, unacknowledged illness called M.E. I want you to know that you are unwell and life is extra extra challenging for you every day. And now I know.
This is not my fault. I have tried harder to live this life than any hero who climbs a mountain, or rows the Atlantic, or wins a gold medal at the Olympics, or gains a PhD, and so have you. Ours is an invisible battle which we can never win but we can be here, living our best lives. Feeling the love when we can and the pain when we can't. An enforced meditation, yes, but maybe a route to the truth? The world is a distraction from that truth and it catches up with you, no matter who you are. At some point we all have to face our vulnerability and our mortality and make peace with it. Ours is definitely the road less travelled but my God, we are strong. We are all heroes.
Don't feel lonely, the entire universe is inside you.