We aim to publish meaningful stories of perseverance amidst mental health struggles.
I spent my days locked indoors. There was no physical block, instead there were much stronger locks smithed by agoraphobia.
I don’t know why it became an issue. I I just noticed that my walks into town, to work and to the pub had become prescribed. Any deviation from the set course caused pain and angst. If I walked with friends who wanted to take a different route, there would usually be an argument and we’d either walk my path in silence or we split up and walk our own paths. Sometimes, owing to the argument, the route would later feel ‘tainted’ and I’d have to walk home instead of going further. It would take a couple of days to feel that the path was safe again.
Eventually, the paths no longer felt safe. Alternate routes had already been discounted. Leaving the house caused panic attacks, vomiting fits, heart murmurs, blackouts… So the only option I had was to stay indoors. It was at least safe.
I’m now on the third and longest stretch of agoraphobia.
Back in the 90s I’d had two periods of around twelve, then eighteen months of being unable to leave the house. Back then, the Department of Social Security (now the Department for Works and Pensions) sent someone round to check up on me, and allowed me to sign on postally. They were much kinder then. Agoraphobia is no longer recognised by the DWP as an illness that prevents you from signing on. Or even an illness at all. Despite looking for work I can do from home, I am deemed not to be a jobseeker.
After a few months indoors, I began to hate things, almost on rotation. One day, I would loathe the coarse weave of the fabric on the sofa. I would pick at it with at it ragged fingernail, pulling threads from the cushions and then cursing the cushions for not being better made. I would hate the curve of the bin lid in the kitchen and refuse to touch it, then complain about the smell of the rotting whatever-it-was invading the rest of the house. I would find the ridges on the glaze of cereal bowls offensive. Sometimes this would happen directly after breakfast and, unable to touch the unclean crockery, I would spend the rest of the day gagging at its sickly, lactic sourness until my partner removed it on his return from work.
My world continued to close in and rooms within my house became alien; their doors unpassable. I became unable to paint - an activity that had kept me sane in the early stages of my illness - as the spare room/studio suddenly became off limits and I couldn’t go in to get the coveted paints. I would be unable to use the shower as the panic I felt when the doors closed became unbearable. The mix of tea tree oil, domestos, black mould that the landlord refused to cure; the rough feel of the anti-slip patches on the plastic base, all conspiring to make the experience of showering as unpleasant and awkward as they could. Luckily, the shower was in the ensuite and the bathroom along the hall held no such terrors. But still, I couldn’t sleep knowing that the shower was so close, so I’d sleep on the sofa with the coarse weave.
Sometimes, on my stronger days, I would sit on the balcony and breathe in the scent of fresh cut grass, or the petrol fumes from the house that backed onto the gardens. The occupant of one house ran an illegal car repair garage, but the roar of engines, the acrid exhaust and the tortured oil that drifted on the prevailing wind were oddly comforting.
Less so, the stench of weed that came from the flat below.
One of the other residents in the block told me that he had complained about the smell of “Marry Hwaana” to the management company. The management gave the residents twenty four hours notice of an inspection. We were then treated to the chemical miasma of a flat that had been beaten into submission by bleach during a cleaning frenzy. Our eyes ran for days and it made every room unbearable. I spent a few days in a state of permanent panic.
My flat had become a character in a hallucinogenic psychodrama. I lived in a place that hated me and that I hated with equal vehemence. There was nothing I wanted to do more than break through these boundaries, but like the dinner guests in Luis Bunuel’s “The Exterminating Angel” - I watched a lot of movies when the PS3 stopped being threatening - I couldn’t leave the building.
For a long time, maybe three or four years, the closest I got to ‘going outside’, was to sit close to the TV and play “Skyrim” on the PS3. If I squinted at the screen, I could make myself believe that the mountains and plains and skies were mine. I could run or fly or glide through the digital open world; I could swim in lakes and rivers and, for a while, feel freedom.
But Skyrim smelled only of warm plastic.
It wasn’t enough.
And then there were the dragons.
And the signs at the edge of the playable map that said “You cannot go this way”.
Even in freedom, I was trapped.
Life began to be a series of impossible tasks. Everything from using the phone, the vacuum cleaner, the CD player became impossible to navigate. They had taken on a frightening, unfathomable aspect. For six months of hell, the PS3 became the impossible task and I was unable to access my ‘freedom’. I had even lost my artificial ‘outside’.
It took almost three years to the day from referral to get help from the NHS. The waiting lists for counselling were - and remain - enormous and completely oversubscribed. When I finally got the phone call to say there was a place for me, I was elated, but it didn’t last. On my first session I was told that because of cutbacks in NHS spending, I was allowed a maximum of twelve sessions. In the next breath, I was told we were looking at a good twelve months of weekly sessions to get to the root of my problem and although I would be given weekly tasks to try and get me back out in the world, everything I achieved lay in ruins when the sessions ended prematurely. I felt abandoned and worthless and lost myself in Skyrim again.
Some days, everything was okay. The house allowed me to get on with life and outside was less threatening. Sometimes I was suicidal. And sometimes I acted on that.
The one thing that saved me was writing. I started to produce a web-comic - very basic art as I’m not much of a drawer - but as a result of that I was offered work helping to set up a graphic novel company. Working from home, I produced, edited and commissioned a number of books, contributing as a writer to some. But my focus changed and I started to write novels and poetry. One of the people I met via publishing also wrote poetry and between us, we put together a contemporary collection that featured poets from around the world. When the book was published, we hit the top of the Amazon books charts, briefly outselling John Cooper Clarke!
This boosted my confidence enormously and, with some trepidation, I managed to leave the house on my own - after many fraught trials. I couldn’t get far on my own before panic set in but I could get to the local coffee shop and supermarket. I began to feel even more confident just by being able to functioning ‘normally’; doing the things that people do. I met people, formed friendships and even, would you believe, had fun!
I looked to doing something more and made enquiries about doing an MA in Creative Writing. I sent a portfolio and suggested that if I was successful, I wouldn’t want to start until the year after, giving me about fifteen months to prepare myself and get used to the train station and the journey, get familiar with the town. The university was thirty miles away, so this was to be a huge undertaking. They got back to me and gave me a place on the course, but somehow hadn’t understood that I wanted to start in the following academic year and told me I started in three months time. I asked if I could defer and they said they’d prefer it if I started earlier.
Three months later, and after an intense programme of re-learning how to travel on my own, I started the MA. I didn’t miss a single lecture, something I’m enormously proud of, but it wasn’t without its problems. Every lecture drained me, the travel more so, and even though there was only one four-hour session a week, it took longer and longer to recover from the stress of being outside.
When it came to writing up, I got a few months at home again, and although I had begun to feel more comfortable, having tasted outside again I wanted more.
I passed the MA with distinction and was later told by my supervisor that I had received the highest mark of any student since the course began. So, I wondered about doing a PhD.
I pitched a research subject and it was accepted.
But I was still having problems with being outside, and unable to get any more help from counselling.
So I made a plan.
I saw a TV programme about “flooding” – a psychological technique whereby you are confronted with an overwhelming amount of your phobia. For example, arachnophobes would stand in a room full of spiders and be taught how to handle them.
For me, unfamiliar spaces, filled with unfamiliar people and a huge open landscape would be terrifying. As part of my PhD pitch involved psychogeographic explorations of cities and towns, and as I’d had a fascination with Norway since I was fourteen, the plan I made seemed perfectly logical.
That plan was to fly to Kirkenes – in the far north on the Russian border – with my partner who would then fly home, leaving me there. I would then make my way to Oslo via as many towns as possible, taking in landscapes and towns, talking to people for interesting stories, writing as I go.
I talked to my Doctor about it and we agreed that it was extreme, but if I had support – just in case of problems – it would probably work. Luckily, I know a few people in Norway. Fortuitously, they live in several different towns spread out quite evenly from Tromso to Oslo. If anything went wrong, someone would be relatively close by.
Unfortunately, that plan is proving difficult. The expense is too great, and not having worked for six years, money is still a day to day problem. There is very, very little in the way of accessible arts funding, I’ve discovered. Even half a dozen short trips to university over three years is going to be difficult.
So, I’m selling my stuff; pretty much everything of value that I have.
I am determined to do this.
From being confined to a single room to dreaming of being lost in Norway is a hell of a path, and for the first time in many years I’m actually looking forward. I’m seeing a future that is fulfilling – rather than just treading water and waiting to die. A future that is exciting, inspiring and worth living.
Who’d have thought?