In the Name of ‘Normal’ (the story of a broken fence)

IMG_7802It is this time of year when the memories of being broken come flooding back and respectfully I acknowledge them and can now gently embrace them as valuable jewels in my life. In a few weeks time it will be three years since my mum died, two years since I went missing, since walking to London for Missing People, a year since going into reclusive mode and starting to write my book, a year since being unable to walk, two months since foot surgery and a two weeks since receiving a formal diagnosis of autism.

How life can change in an instant. If you had met me several years ago I would have presented to you as a completely different person. My job title was Teaching Fellow at a very well respected University. I had a beautiful room in the Social Science and Public Policy Department and taught students who were studying for a career in social work both MA and BA and post qualified practitioners who were studying for a higher professional qualification. I was a member of the Higher Education Academy, I loved applied law and safeguarding practices and grabbed every opportunity for teaching them. It hadn’t been an easy journey and I would on occasion sit in my room, looking out over the leafy campus and wonder how on earth I had managed to achieve that status, prior to that I had worked as a Senior Lecturer in a city University that buzzed with energy and vibrancy and adrenalin.

I had left school in the back of an ambulance with no qualifications, I had spent the majority of my teenage years in and out of adult psychiatric care because children’s services were non existent and I had been told that it was unlikely that I would ever make my twenty first birthday. It had been a tough often devastating adolescence and I had witnessed things that no child should have been privy to, experienced abuses inside the walls of places that should have been protecting me. It had been a journey that had taken me to so many different places, I was a cleaner in a faith community in Wales, I worked in a glue factory, I became an arts graduate, a painter, musician, church going kid who was asked to leave for coming out as gay. I was often in a whirlpool of crisis, propping myself up with untold dangers, burying friends who left this earth too soon. My dad died when I was in my late twenties and it was that pivotal moment that changed me, made me apply myself with such force to prove my worth, to achieving more than others had long expected. I left my beloved arts and began to study. After years of practicing within a profession that I loved, I was given the privileged position of teaching at a level that was far beyond what I had ever dreamed possible. I was the kid who needed social workers and I had some mighty fine ones and some really terrible ones but I never thought it possible that one day I should spend my days in a lecture theatre encouraging and building others in the pursuit of their dreams or in tutorials listening to the doubts and challenges of mature students sacrificing everything to return to education.

Just as many women work and juggle family life and other demands, I was a carer too. My life was embedded within academia and looking after my mum who had dementia and Parkinson’s disease. Life was rich and full and busy and funny and challenging and all was well in our household. I enjoyed a generous salary and quality of life and pushed through each day until I eventually began to unravel. One of my biggest challenges was trying to manage the ideology and good practice that was embedded into my psyche alongside the ‘mish mash’ pothole of an experience that community care provided us with at home. It was a diverse and complex melting pot of excellence and horror, of wonderful kindness and ugly, judgemental otherness. It was at times simply heartbreaking and we fought and won many battles that cost us greatly. By now I was delivering a lecture in the morning and then lying, curled up on the floor of my university room, holding my head and trying to find some energy to engage with life for the afternoon, giving out and giving out to others, being the class clown and forgetting to top up myself again.

It has been a very cathartic time, writing my book and it is nearing completion now. Because for me there is no other way of making sense of what happens to us without the tools of writing and music and painting. I don’t know why I was afforded the grace of being found in London and when I think back now to that solitary figure, sat on a bench, tired, hungry, hearing the drone of the London traffic, clutching my mum’s lilac cardigan, I feel only sadness. When I think back to sitting in a doorway with a well dressed woman shoving the door into my back as she opened it to tell me to clear off because ‘decent people use this place’ and I couldn’t even look her in the eye when I whispered the word “sorry” and walked away. I had walked so far that when I was found the soles of my shoes literally fell off, the rubber casings disintegrated on the bathroom floor and I stepped out of them as if symbolically levitating away from the symbols of pain. That Achilles heel has stayed with me since as a close reminder of that pilgrimage, it was the last frontier, operated on in December. As a missing person I had never hurt so much in my entire life. I had never cried so many tears, felt such aloneness, had so little desire for anything. I couldn’t even read a line in a book let alone write articles, exam papers, law lectures. I was faceless, like the child sitting in a psychiatric ward wanting my mum.

“In my dreams, I see your face, walk with you, hold you safe. I close my eyes, I think of you, until the day I see you again”….I swear to God that every time I hear those words of The Missing People Choir I am right back there in that doorway, rocking and wishing that I could trust someone to help me and yet being so paranoid that I was in terrible trouble for having left in the first place. How could I ever not reach out my hands to the Missing People charity when they did just that for me? I will be forever indebted to their generosity and to the kindness of Amanda Holden who helped me stop running.

Time does heal. It has taken three years to recover but it does heal. And, as I embrace the slow rehab of walking again and rebuilding the wasted muscle from not using my leg, it has a strange correlation, you can’t run before you can walk. Rebuilding emotionally has been equally as important, learning to strengthen emotions, harness good, healthy self care, utilise the help and support of dear friends and loved ones. It has been three years since I have worked, engaged with society on a consistent level but it’s been a crucial time for recovery, one that has ensured that recovery is permanent and protected. I am no doubt stronger than I have ever been, more resilient, more self aware, more eager to engage with life in its truest sense. I may not have any money but I am rich.

Two weeks ago, I was fortunate to be able to spend time at a specialist centre for autism in Kent where, over recent months, the records and reports and history and trauma of life and all of the calamitous experiences had been gently and carefully and respectfully teased out, explored and acknowledged. And finally, aged 56 years old I was told formally that I am and always have been autistic. Within that moment I heard every slamming door in every hospital ward, every screaming echo in corridors of silence, every negative, misdiagnosed, sedated year of stigma and lost youth and my life made sense. I was referred to as resilient, strong, positive, creative, unique and a survivor and I cannot find words that fully express how liberating and endorsing that is. I only wish my dear parents were here to know that I was always meant to be different.

We couldn’t have done this without the love and support of our friends. I want to publicly thank Carrie and David Grant for holding us, guiding us and welcoming us into their tribe. Through those dark Missing days, before and after, they have simply loved us and now they continue to help us to understand what autism means and the beauty of its revelation.

This week, myself and my wife Jayne went back to the grounds of the old hospital and although in the main it no longer stands, amongst the new, luxury apartments built from the old asylum ruins are the same trees, the odd brick and a section of old railings that used to form the perimeter fence around the hospital. As a child patient I was required to dress in over sized overalls, on a busy main road and paint those railings in the name of Occupational Therapy. We were called ‘nutters’ and other words that I would never choose to repeat and we had rotten fruit thrown at us from neighbouring houses. I found those remaining fences, hidden under years of growth and debris and almost forty years to the day I could still see the layer of paint that had been mine. I’m not afraid of nor owned by those memories any more. I have a brick from the old hospital on my window sill, pine cones from an old tree in my fireplace and a photograph of my railings to remind me that no matter how lost we feel, how misunderstood we become, underneath all of the veneer our true identity holds fast to the hope of one day being allowed to show itself and to be free. I shall always remember the people I counted as my friends who never had the luxury of feeling that freedom.

My name is Ju and I am autistic and I shall spend the rest of my creative, quirky, ‘dance as if no one is watching’ gift of a life embracing just that.

To everyone who has been part of my story, thank you.

With love,

Ju

6 thoughts on “In the Name of ‘Normal’ (the story of a broken fence)”

  1. A very inspiring and moving account. As a mother of an autistic adult, and of a child just recently diagnosed as on the spectrum aged thirteen, I understand how crucial it is to know. There is still not enough awareness or support for people of all ages with mental health and developmental issues, but I have to hope that will change. Good luck with the book and I wish you and yours a bright and happy future. Keep dancing your dance and others will soon join in. xxx

    Like

  2. Reblogged this on patc44's Blog and commented:
    So many folks must be walking around not knowing why they do what they do. WI work with a psychiatrist who says ‘labels are only for jam!’ And our past and and those ‘labels’ dont define who we are.
    An amazingly written piece. Im glad Ju you have hopefully found peace.

    Like

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