Scenes of Life – Week 015 to 021

Scenes of life - Week 015 to 021

Scenes of life is a weekly personal diary. From moments in my life that have marked the week, to passing feelings and overheard conversations, I record what has made an impression on me or what has caught my attention.
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Week 015 to 021

My head was empty, my brain exploded into a thousand pieces I couldn’t connect back together. I sat, huddled in the corner by the front door. Cold air from outside brushed my lower back. Dimly I thought we should do something about that but the thought glided past me. Instead I felt the cold, something I could understand.

It was a caress of a different temperature than my surroundings, than me. I realised my partner was next to me but I did not turn my head to her. I was not ready to cope with anything. Slowly, her voice reached me, a litany of words incomprehensible like the litany of church in a foreign language. I wanted her to both stop and carry on. I chose to cling to the words, their meaning gradually seeping into my consciousness as the cold air and the string of sentences pieced my scattered brain back together.
I uncurled my body, unsure of how much time had passed. All I understood was that I was tired. I was tired of being scared, of being on the verge of collapse all the time, of just getting by, of having meltdowns after meltdowns.
I remembered my words to the doctor a few of weeks earlier, my voice small and scratchy with tears. I just want to crawl on the floor and build cameras.  It was an oddly specific thing to say but one I knew to be true. During the summer months I had collapsed in a similar way, all my boundaries pushed too far. I had chosen to shut down and immerse myself in the tactile task of creating a camera out of cardboard. There was a thing I could understand, something I could control. It had many tasks that did not require me to think and live beyond the world of cardboard, scissors, tape, and paint.
But I could not do that now. The following day I had to go to work, deal with customers, and the endless chatter of my colleagues. I wanted to shout at them to shut up, one and all. Yell as loud as I could that their their voices were like sandpaper to me, throw the desk in the air and let them see. See what, I didn’t know. But I couldn’t because that’s not what you do at work. Instead I found myself pushing at the boundaries of my abilities, my brain stretching to the edges of my skull, pressing in, urging me to stop to stop to stop to stop to stop. But I could not.
So I burned at home, blazed like a fifth of November bonfire, accusing my partner of all the monstrosities she didn’t do. It was easier. But sitting there, on the rough doormat in the entrance, I knew this all needed to stop. And stop now.
‘Two more days,’ I mumbled. It was a plea to my brain to hang on. It was only two more days until it could shut down and start the process of recovery and understanding. It was also a plea to my partner, to wait two more days, to pardon me for not taking better care of myself when the offer from the doctor had been there.
I had been afraid to take it. Afraid that work would think less of me and not want to renew my contract at the end of March. Afraid of having to explain why I needed the time off. ‘Because because because…’ I could not even finish the sentence in my head. The word would trigger another violent collapse I needed to avoid.
Treading carefully, I stood up, my body shattered. ‘I feel like… Like I’ve been run over by a bus,’ I told my partner. I turned quiet again after the words, heading to bed for the night. It was all I could manage.
On the last day at work, I slid back into myself. It was the 19th of December, the last Saturday of being open. I knew the routine of it from my days working in public libraries. Every member of staff was adorned in a Christmas jumper or a Santa hat, customers smiled and laughed, boxes of biscuits were shoved under the Covid plexiglass barrier. It did not matter that the offering of a box of biscuits for staff to share during a pandemic made no sense. We opened them all anyway and gorged on cheap biscuits and chocolate for a semblance of levity, endlessly washing our hands.
I laughed that day as L. ran out of reprimands for how I wrote her name on her third certificate. We had by now established that I had learned to write in a different way than her which explained the atrocity I seemed to be committing every week. Tic and tac, I knew how to respond to every sentence, having rehearsed it time and time again.
My partner picked me up after work, the vibrations of the car soothing my exhausted mind. I could stop now. I did not have to speak. I did not have to joke. I did not have to smile even or do anything I did not want to do.
My body collapsed, sleeping for longer than it normally would. I read fanfictions, recorded podfics, and disappeared into a fictional world that was teaching me to be kind, that was showing me a world that could be. I ignored everything else, and along the way my brain built itself back up, releasing the shackles that were holding it in place.
I picked up my reservations from the library, The Electricity of Every Living Things  by Katherine May like a beacon in my hands. I plunged into the book, reading passages aloud to my partner. ‘That’s how it feels,’ I would say. It was not always quite right but it was always close enough. Here were words that I understood, words I didn’t have to work to form because someone else already had.
On Christmas eve my referral letter from the hospital arrived. I opened it carefully and read through every words. It was clinical and blunt. But there it was, the hospital acknowledging the conversation I had had with my GP more than a month previously. The word autism danced in front of my eyes. In the safety of my home, it was a word I could grapple with. ‘Autism…’ I rolled it on my tongue, trying out its edges carefully. It felt right, it felt almost safe. The world of autism I had found online was welcoming, full of information that was helping me, of conversations that didn’t judge.
I dropped the letter on the desk in the study and left it there for as long as I could. The letter indicated a deadline I thoroughly resented. I had ten days to reply. They had taken more than a month to acknowledge the request from my GP, and would no doubt take many weeks before replying to this letter. Why did I only have ten days? I did not want to think about myself in clinical dysfunctional terms over the holidays. I wanted to rest and be kind to myself, learn that autism was not the son of one of my mother’s friend I used to be frightened of, that autism was not the same as the insults thrown on the playground when I was a child. But this, right there was telling me I was wrong. Different, not whole. Broken and wrong. Diseased, disordered.
I shut my brain down and resolved to return to the letter at the end of the holidays. I had a puzzle to complete and a string of stories to edit first. I carried on living, nothing as important as the present moment. I had the luxury of time, the safety of privilege, the forgiveness of my partner. I was safe. And I began to heal. I learned to name the signs I had long ignored throughout my life. ‘Can we return to normal tomorrow,’ I enquired of my partner. ‘I don’t think I can do this any more.’ This was only too much food, a little too much drink, and hours that didn’t fit my every day pattern. This was a standard quiet Christmas break but I could feel the tension building, my body itching with the uncertainty of routine thrown out of the window, my brain quietly filling me with discomfort.

I drew smiley faces for our fridge, images I could point to and say ‘that is me today.’ A part of me recoiled at the childishness of the makeshift mood board I had created but another part beamed with pride. Here I was, taking control, making life easier. I unearthed an old baseball ball I use to carry with me at all times, my fingers endlessly gliding over the stitching until my brain reminded me this was not an acceptable behaviour to have. I did not understand why I liked it so much, I just knew I did. Questions did not matter. I was letting go. This was the first step. Answers would come later. First I needed to trust that I knew myself, and that it was okay. It was okay to want things a certain way, it was okay to want to glide my fingers on the stitching of a battered ball, it was okay not to understand. It was okay.

I returned to the letter on the desk, hating every questions it asked. It was simple, too simple, idiotic when you considered this was addressed to an adult who had spent more than thirty years navigating this world before collapsing. I filled in the boxes as neatly as I could, sealed the envelope, and dropped it off at my nearest post box. It was done. The process had began. All I had to do now was wait. I was due to return to work a few days later and was mildly dreading it. My last weeks at work before the break had been horrendous, my brain fragmenting with every passing minute under the pressure of a mask that was melting onto my face, acid on bare skin.

I took it easy, deciding that if no work got done on my first day back then it was okay. I would read fanfictions stealthily and stick to the bare minimum. This is not what happened. My mind relaxed into the known routines of making brews for colleagues, taking phone calls, answering e-mails, and catching up with customers. I had a schedule once more, one I had come to know, and I revelled in it. It was predictable and safe. Everyone bemoaned the return to work, the fact that we were remaining open in spite of a new lockdown. I nodded and used the right words to be part of the crowd but it was all a lie. I wanted to be open, to continue coming into work. This here was stability. I was aware of the danger of the virus, of our customers not wearing masks (due to medical exemptions), of partners of colleagues working in schools with children of key workers, of my own partner weaken immune system. But this was were I felt safe, this bubble of the known present. It stopped my brain spiralling out of control, it curtailed the anxiety of being furloughed, it saved me from building a new routine of work from home.

During that first week of January, I received a badge stringing rainbow coloured letters together to form the word ‘autism’. I intended to pin it to a small camera bag converted into a makeshift everyday comfort kit. In it were the earplugs I had finally allowed myself to buy to dampen the loudness of the world, an essential oil bottle to counteract the aggression of laundry detergent , perfumes, and body wash that other people seemed fond of, as well as a couple of stim toys I had found and could not stop using. The badge was an afterthought, a way to acknowledge to myself that this was okay, but holding it in my hands for the first time, I became unsteady. My fingers traced its contours, feeling every ridge and curves in an attempt to tame the growing apprehension within me. Was I ready to wear a badge labelling me as autistic in a big wide outside world, to be vulnerable and aware of people’s judgement? I pinned it to the bag regardless and left for my appointment at the chiropractor, the metallic letters glinting under the artificial glow of street lights.

Two days later, my world shifted once more. After a close call with a confirmed positive Covid case from one of our customers, my workplace closed and I was relegated to working from home. My colleagues all celebrated in the back container, one part of the worry equation taken out. I retreated to the kitchen to wash the many mugs of tea I had made that day. I was not happy. I understood the need to close. I had been one of the few people exposed to the customer. I had interacted with him and luckily escaped getting the virus, and I was not comfortable with this or the fact I wasn’t told to self-isolate. But those two containers that formed my office and the workshop behind, were the anchors that held me balanced. I focused my eyes on the swirling water in the mug, soap bubbles floating at the surface. The water was too hot, scalding my skin but it was of little importance. It was an easier sensation to deal with than the slimy marigolds laid out on my desk. I wanted to kick the cupboard by my legs, to smash the mug on the concrete floor, and lay my body down in the fragments, throwing my limbs in the air like a small child in the midst of a tantrum. I breathed in, understanding the signals from my brain.

I plugged my earphones in and chose a playlist I had found soothing over the Christmas break, turning all of my attention to the music seeping into my consciousness. Slowly, I returned to myself. The mugs washed, the kitchen sparkling clean and virus free, I returned to my desk. I wrote a list of all the tasks I needed to do in the following days:

  • To pack: laptop, mouse, keyboard, banking paperwork, computer monitor, extension lead, power cable.
  • To do: find two workspaces at home. Can the painting desk be converted to a working station? Is there enough space in the reading nook to move it there?
  • Find a new routine. Commute. Work hours. Lunch. Bedtime.
My colleagues chattered on in the workshop while I texted my partner. There was too much for me to comfortably carry on my bicycle on the way home, especially with a forecast of rain. She came to pick up the electronics I needed in order to work from home and I left cycling. I blasted music into my ears to block out all thoughts.

I understood this would be a bad evening so I took it easy, doing nothing, letting my mind adjust to the idea of change. The following day I rearranged the house to the plans that had been floating in my head the previous day, creating two workspaces in a house that had not been designed for this purpose. I hovered around my work laptop, keeping an eye on my mailbox, but mostly leaving it untouched. Instead I focused my attention on the film photography community of Twitter. I immersed myself into the technicality of taking my first shots in my new large format camera, the smell of coffee and vitamin C filling the bathroom as I mixed them together to create a developing agent for the negatives. It was Friday and I had the entire week-end to rest.

The week that followed, I allowed myself a free pass. I expected nothing. The goal was to survive, listen to myself, and find my feet. The whirlwind of rapid shifts during the November lockdown had triggered a series of intense meltdowns I was not willing to experience again. I knew this time was different though. I had time on my side. In November, I had spent a single week working from home but this lockdown had no end date which meant I could be more relaxed about it.

I was gentle with myself, the inherent tension that I had lived with for so long transformed into a balancing exercise I was learning to master. Every day, I changed the smiley face on the fridge to match my mood, pointing it out to my partner if I was especially fragile and sensitive that day. I walked around the park, learning the faces of dog walkers and children going to school at the same time I was out. I wrote down bite size tasks for work I could complete between tea breaks or the length of a song to match my level of focus on any given day. And along the way, I discovered a bubble in which I felt safe again.

My paper diary stopped being about the quiver of my soul and minute observations of my feelings. Instead my spidery handwriting filled the pages with observations of the weather and life around me, my eyes open onto the world, my being anchored in the present moment for now.

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