Living Undercover (A message for Mental Health Awareness Week)

I awoke to the sound of a neighbours heeled shoes clippety clopping on the hard driveway, the noise deafened me, she was exchanging pleasantries with another neighbour, talking loudly about the sunshine, laughing, the car door slammed shut, the engine revved and she was gone.  All of those sounds had created a cacophony of audio waves set to a frequency that set my teeth on edge, made my stomach do somersaults and I could still hear them an hour later. I felt detached and alien, bewildered by the capacity to chat freely without twisting my hands into tight shapes. I had woken upside down in the bed after a restless night of dreaming about goldfish attached to my finger tips and the light through the curtain was vivid and strong throwing beams across the room like jagged lasers. It’s three years since my career ended, it has been a profoundly life changing time, I have no ability to relate to the normal stuff now, it feels as if it was somebody else’s life a parallel universe.

Yesterday had been a day of trying hard to engage, not with people, these days I rarely do people, but with the environment. The smell of albumen and raw egg penetrated my head and infiltrated everything I touched and attempts at overcoming that had left me pulling at my hair and screaming with frustration, unable to eat. Every step I took in the house I could hear the crunching of the dust in my head and if caught by the sunlight I could see it resting on my skin, no amount of scratching it off would remove the feeling of sheer antagonism. My only solace was to hide under a blanket or incessantly flick on an iPad game that challenged me to line up four purple hearts  in a row and I tried for two hours without giving up. All I could do was to rock away the stress of trying to function in a world that was not affording me a peace of mind, a peace my mind ached for.

As I sit here now, writing to you, reflecting on Mental Health Awareness Week and wondering if I should be writing something more uplifting and positive, I realise that if I am to retain my integrity and truth I must be real about life and it’s challenges. I am a master of disguise but in a world where people are sharing more openly about their own battles I am less inclined to mask and more encouraged to be honest, I no longer hide behind job titles or status because I have none, my masks have gone.

I can hear a distant high pitched vacuum cleaner from inside someone’s house, the droning traffic from the motorway a mile away, the greenhouse pump from two doors away intermittently making a roaring sound and birdsong mingled with a distant helicopter from the nearby RAF camp. But, I have managed to go out for a ride with my wife and dog today to a local pool where people gather for picnics and family times. I couldn’t walk on the path without shielding my eyes from the litter on the ground that makes me feel like ripping the skin off my own face, I feel it in the pit of my stomach as if smacked by a leather football and I fear falling and having no control over my head being near to it. I can’t look down for fear of seeing litter, I can’t look up for fear of treading on some. Each time my dog goes near to it I shout “oh no, no” it torments me like a goading devil.

And yet, I see a hundred different yellows in the trees and the shadows that dance through my peripheral vision dance to a rhythm that my foot taps repeatedly to on the journey home and there is hope in the nature of things, the predictability of the seasons and the growth that is bursting out of every flower and nest and branch. There is solace in nature, it’s honesty, it’s vulnerability, it’s perpetuating cycles and sureties.

A few days ago I had received a phone call from an unknown number and despite never usually answering I clicked on receive and said “hello”. A woman from an assessment centre, entrusted with my support, says that she needs to visit me and asks if I’m “likely to be violent towards people if anxious”. I feel diminished and my broken spirit wants to tell her that I’ve spent twenty years as a social worker seeking to safeguard vulnerable people and now the word ‘autistic’ renders me stigmatised and stereotyped, misunderstood and wrongly judged but I say nothing, I feel like nothing, in one sentence I have been rendered voiceless and she has never even met me.

Afterwards I hear a fly in the house and I need to bash my head with my hands and draw a letter ‘Y’ and the number ‘6’ in the air again and again until the buzzing stops, my wife texts me from work to remind me to have a drink, I get a glass out of the cupboard and the smell of albumen smacks me around the head again like an angry shadow and the drink is abandoned to tears of frustration and I hide under the blanket thinking of purple hearts  and remembering the relief of draping a sheet over the table as a child and crawling inside for some peace.

I know now that I am autistic, I have known for exactly three months but I have lived the autistic life for fifty six years. Knowing who I am is changing the way that I understand my world but it has done little else to remove the conflicting stimuli, the contradictory messages, the slight of hand that makes just one unpredictable moment engulf my sensory world. The demons still walk by my side, the losses still  outweigh the gains. I have yet to find my freedom and have no idea what to do next as I tentatively enter this new phase of life. Everywhere I look there are debates and discussions on supporting children and evidence of massive shortfalls but as yet I haven’t found a place that will enable me to reengage with life, find a new rhythm, be myself, use my abilities and experiences and gifts for good. I am learning patience and self compassion and cannot believe that I’m actually writing those words down!

I am proud to be autistic, it has been like meeting a lifelong friend for the first time, a friend that has always been there through the rugged years of survival but whose voice was never heard nor engaged with. But we should never underestimate the impact of living differently in a world that picks at your wound like a hungry raptor. We have learned to mask our true selves for the benefit of others and for the safety of surviving a society that presumes we are violent, unfeeling, disengaged human beings when in actual fact we are simply wanting to dress in yellow suits, paint landscapes that reflect the wonders of imaginations untethered and be valued and accepted for our quirky eccentricity our deep sense of wonderment and our resilience to constantly swimming against the tide. We know stuff, given the opportunities we can be world changers.

I survive today in the hope that tomorrow will be less of an assault on my senses and more productive and fulfilling, less of a battle and more of an adventure. I long for adventure, I long for the day when I can reflect on the words of  Najwa Zebian — ‘These mountains that you are carrying, you were only supposed to climb them.’ And to feel as if I have reached the summit of my purpose here on this earth.

Mental Health Awareness Week you have been challenging but through every veil of cloud cover there is always blue sky just waiting to burst through and when it does I shall paint it with unbridled passion to the sound of a perfect symphony, cobalts, ultramarines, manganese and  turquoise, laughing in the face of adversity and standing firm to the promise that it takes both sides to build a bridge. I’m holding out my hands across the water, will you meet me half way with yours?

With Love

Ju x

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