If this is right, why does it feel so wrong?

I did something very rash this afternoon. I paid to take Dad out to the local cinema to see the new Star Trek film. For those who aren't already aware, I hate public spaces. I hate the noise, the crowds, the mess, the stink, the brightness, the speed at which everything moves and well, everything about it.

It's not a mental condition to be scoffed at because it ruins your life and that's before agoraphobia has crept in through the back door.

Photo by MGL

I took it upon myself to do this today not for myself but for my Dad. He wanted to see the film but didn't want to go alone, and I felt bad for grumbling 'no' when he asked. I was also spurred on by Matt Haig and his blogs on Booktrust, which revealed what it's like to live with mental health problems.

After reading what Matt had to say, I did something that I find difficult; I thought outside of myself. I come across as a narcissist but it's not an option. I have hard time connecting to my feelings and understanding that people have feelings too, and how that feels. The will to empathise is there but the capacity isn't, not in its entirety.

So I paid a stupid amount of money for cinema tickets, packed my bag, dosed myself with Vallium, wrapped myself up (cinemas are always fucking cold), and donned my shades.

I made sure to book the seats just where I needed them too, just in case I needed to leave. We settled into the screen room with a drink and popcorn (I wanted an authentic experience for my Dad because it's been so long) and sat through the film. I'm sure he enjoyed it but I spent most of the time fidgeting and flinching. It was too loud, too bright and the things on the screen were too big and moving too fast. I'd forgotten my earplugs so pulled my hood up to muffle the sounds, intermittently plugging my ears, and distracting myself with a Chunky KitKat whilst trying not to vomit, and figuring out where I could vomit should the bile arise.

In addition to this massive sensory overload, I was sitting in a big, loud room surrounded by strangers. I found this abnormal as opposed to a natural human thing to do.

The film finished and to top off the day, I got Dad and I some nosh from a fast-food place. The whole experience, film, food and all, was hard. It was uncomfortable. It was something that I never want to do again because I gained no pleasure, confidence or strength from it.

There are many, including the mental health folk who presume to know what's best for me, who will argue, until the cows come home, that this exposure is a triumph. It's a great leap, a step forward, the beginning of my recovery.

No it's fucking not.

I'm exhausted. I'm stressed. I'm traumatised by having to be around people in the dark for that long.

Cognitive Behavioural Therapy (CBT) is all about taking gloomy, negative thoughts, challenging them and turning them into life-affirming, positive components for the recipient to absorb and live by. What I did today is a typical exercise: face your fears, challenge them, destroy them. The only problem is, it's not that simple in my case.

Assessments for my mental health have been inadequate. There are things that haven't been explored that should have been, which makes for an incomplete and messy picture of what's going on. And in the meantime, I'm following the CBT rules because they're the only thing I have. Only, they're crap and don't work properly. I spend hours every week challenging my negative thought processes and, yes come out with more helpful alternatives, though I remain haunted by one thing.

It all feels wrong.

I've tried challenging this but the result is the same. Why isn't this working? This article explained a lot. Basically it says that whilst CBT can be really effective, it can sometimes leave a patient in disarray. Mental health issues might be too complicated for such a straightforward approach or the individual may have most likely been misdiagnosed. The therapist might not be looking at the bigger, humane picture. Psychiatrists might decide that an individual isn't 'suitable' (awkward, unpredictable, unwilling) for CBT; other conditions can also impact on the effciency and success of CBT, both mental and physical. For example, I'm totally confused as to how I'm meant to work within new cognitive parameters when my social phobias, agoraphobia and other health problems not only contradict the therapy but outright subvert it.

How is it possible to sit in a cinema and be happy, relaxed, feel safe, put your fears in place when it all feels so wrong? And why isn't it okay for all these things to feel wrong? Where are the rules, written in black and white, enshrined in law, stating that I am legally bound to be happy about situations I dislike with all of my heart?

Why is it so hard for people to accept that we are not all the same, that others thrive on things that a lot of people would lose their sanity over?

I don't want to be an isolated recluse for the rest of my life. I would like joy and close friends, a partner, a safe home and activities which both challenge and stimulate me. Oh, and a pug named Horatio. And a small, manageable garden.

I don't want loads of money, a flash car or fame; I don't want to go out drinking in crowded bars or eat at fancy restaurants; I don't want to be directly in the public spotlight; I don't want to go to the cinema again (seriously, I paid over twice the price of the DVD which will be out in a few months, on the tickets alone); I don't want to be part of the massive global world because I don't believe in it (I believe in small communities); I don't want to have the same cultural interests as everyone else, or the same sense of humour, or the same outlook on life. I don't want to fight or be manipulated.

I want to be me.

I know that I have conditions to manage and that their certainty is a matter of opinion. I'm prepared to explore these conditions within parameters that stretch me but don't endanger my stability. I'm scared. I know what I want but everything that's meant to be helping me get there is leading me in an unsuitable direction. All the professionals in the world can insist but if what they say feels wrong, if my solar plexus aches and that voice in my head says

“uh Sam, buddy. Nah…”

I'm not about to do shit that I don't want to. Anything or anyone that states I have to and is not within moral and ethical standards, or within the law (this one worries me because mental health law disables more than it enables) for insisting that I should, can jump ship. They're breaching my human rights, that fundamental right to say 'no'.

I won't have that taken from me. And that attitude feels so, so right.

 

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Things I want to do today

1. Finish reading A Room of One’s Own by Virginia Woolf
2. Finish the draft of my short story in preparation for either the Mslexia 2012 Short Story Competition or the Bristol Prize
3. Complete the first wristwarmer I’m knitting and begin the second one
4. Complete sock 1/2 that I’m knitting
5. Go outside
6. Write the next post to continue the ‘Creativity for Agoraphobiac’ series
7. Draft ideas for my novella
8. Redraft Scene 2, Chapter 6 of Trace
9. My yoga practice
10. Write letters to friends
11. All of the above without exhausting myself

Update: It’s almost 5 pm and I’ve barely touched the list. Some of this will have to be moved to tomorrow.

Update 2: Getting there. I’ve decided to pick three more I know I can accomplish by the end of the day. Number 11 obviously isn’t one of them…

Update 3: So picking three was a bit adventurous. Moral of the story: be realistic about what you can achieve in one day. I’ll do more tomorrow.

Creativity for the Agoraphobiac Part One

Agoraphobia is the fear of crowds, being in public spaces, being around strangers, people in general, being in unfamiliar places or away from home. It commonly arises alongside Panic Disorder, a debilitating mental condition where the smallest thing can make you freak out and feel as if you’re about to die.

Anxiety / panic attacks are horrific. Anyone who has ever become suddenly aware of the weirdness of a situation and started to sweat because of realising that weirdness, knows what it means to experience anxiety and panic. Long-term sufferers live with that feeling every day, sometimes in that mild form, other times in such an extreme way, medication is required to sedate them.

I am one of the X million people in the UK who live with Panic Disorder and have developed agoraphobia as a result. I’m going to make a list now, one of my favourite things to do. This list outlines my experiences as an agoraphobiac.

Crowds

The thought of three or more people in one place at one time, near me, makes my stomach shrivel. I rarely venture out at the moment, due to a serious relapse, but if I do, I have to plan my outings and set myself time limits for how long I can stay out for. I do not go beyond my village, a mere half-mile up the road. If people start pouring in, I have to leave. Symptoms include:

•  Sweating
• Dry mouth
• Headache
• Nausea
• Dizziness, light-headedness, feeling faint
• Shortness of breath, sometimes a lack of breathing altogether
• Hyperventilation
• Difficulty swallowing
• Palpitations
• Chest pains
• Sudden bowel movements (hilarious fun…)

There are probably more but I can’t recall them and herein resides another element of my mental health that must be explained before I move on to the next experience.

I dissociate. What that means is that under stressful and / or frightening situations, I disconnect from the experience. It’s not an uncommon thing. Dissociation is a psychological device which enables us to survive traumatic experiences. If you’ve ever been in a nasty accident, experienced a bereavement or even seen a film that’s scared the buckets out of you, you might have a hard time remembering the event and feeling any emotions that would naturally be connected to it. This is our brain’s way of protecting us.

My own life experiences have been traumatic in a consistent enough way to make dissociation a regular defence mechanism so that now it happens naturally. I can’t control it and I don’t know or understand all of my triggers yet. What I do know is that when I have a panic attack, I disconnect. I can’t remember everything that goes on.

Public Spaces

They don’t have to be packed full of people to terrify me. For reasons I don’t understand, I experience spatial and visual glitches. I call it ‘Alice in Wonderland Syndrome’ because either I’ve become really small or everything around me has become monolithic. Even the sense of my own physical body becomes warped. The same list of symptoms applies and more often than not, I leg it and try to find somewhere safe to hide. Mostly I don’t go out at all.

Stranger Danger

Meeting strangers is a nightmare. I remember my first day back on the second year of my MA. Not only was I in a small, public space surrounded by a crowd of people, I didn’t know a single one of them. But I was determined to finish my studies and I set myself a target: make a friend.

Having the willies about strangers doesn’t lend itself to making friends, I can tell you that. What if I make a complete tit of myself? I’m a weirdo anyway; I have a habit of staring, I say inappropriate jokes and statements when nervous, and when I get really wound-up, I start ticking.

Ticks are physical twitches, involuntary movements. Mine are mostly facial but at my worst, I roll my shoulders out-of-place and continuously wipe my thumb and index finger over my brow and nose, one after the other. I fidget, jig my legs, twist my fingers and experience sudden spasms that make me turn my head quickly. I try to calm down but it’s not easy. I make odd noises too. All this in front of people I don’t know, who don’t know me, can become too much to handle.

Public Transport

I hate buses. Trains I can just about cope with. Cars are bearable only in cases where I trust the driver. Recently, all have been off the menu. Simply put, I don’t want to be in a confined space with other people and I certainly dot want to be transported to places where there are other people. I refuse to learn to drive too because I’m terrified I’ll end up getting lost or cause an accident because I dissociate and freak out.

Home Alone

I think I can be left to my own devices at home for around fifty minutes before I start to panic. What if my Dad has had an accident? What if he’s unwell? What if I hurt myself? What if I become sick? There’s no one here to help me.

There are days where I experience nothing. What I mean is, I’m so out of my mind and confused, I can’t work out what the kettle is for. I know I want to make a cup of tea but then I realise that I don’t know what tea is, let alone how to make it.

I can’t account for what happened in any precise way, but I remember wanting to cook some scrambled eggs. I’d not been eating properly and for once, I was hungry. With making a cup of tea being hard enough, I think I must have become disenchanted with the eggs and distracted by something else. I remember the TV, which was turned off at the time, being fascinating.

I returned to the kitchen some time later (I’ve no idea how much time had passed) and noticed that it didn’t smell right. It smelt thick and sort of sweet. There was a hushing sound. I’d turned the large gas ring on, intending to cook those eggs, and walked away without realising what I’d done. I could have blown my home to pieces, myself along with it.

Sweet Dreams

All of the above does not make it easy to relax. I have terrible trouble getting to sleep at night and maintaining that sleep, which is why I’m awake at almost 1:30 am writing this.

Exposure

Newspapers are off the agenda, along with news broadcasts. I have to carefully select any TV material (all apocalyptic material is to be avoided, no exceptions), and when viewing a film or episode of something, I have to make sure that I’m physically aware of my safety. Obviously I don’t go to the cinema or the theatre. A rarely watch TV. The films and shows I do watch can’t contain anything too heavy.

I got into Sherlock recently. The second episode scared me so much, I sat in bed crying for an hour. It wasn’t the hound; it was the setting. The open spaces of the moors juxtaposed with the claustrophobic trap of the research facility. And the tourists. God, the tourists…

Reading fiction also requires vigilance. Certain topics can make me throw the book across the room in terror, and I love books. I’m a bibliophile and proud. But I get so involved with the characters, I forget me and begin to experience them, their world and all the people and spaces, their fears and feelings. It spirals and I have to take a break, ground myself.

It helps to have someone who ‘gets me’ close to hand, when engaging in any TV or reading, for reassurance. To stop me from going off the deep end.

A Deeper Understanding 

It’s not just physical effects that panic and agoraphobia inflict. The mental side of living with these things is hellish.

• Wave goodbye to your self-esteem and confidence
• Say hello to increased periods of depression
• Reality becomes implausible
• Embarrassment makes it hard to seek comfort and advice
• Isolation breeds paranoia
• Mistrust strains relationships
• Fear paralyses efforts to break free
• Confusion erases time and memories

You’re probably feeling as miserable about this as I do now, after reading that. I’ve found however, that even if all of the above is going on and blocking my path to a happy, fulfilled life, I can always find a way around it. And if you’re in the same boat as me, so can you.

My next post, Creativity for the Agoraphobiac, Part Two, will be focused on the creative activities I enjoy but because of my mental health, are restricted. It sounds daunting I know, but I’m going to be finding ways to rediscover the pleasure of these activities without aggravating my fears and making myself sick.

Until then, I’m off to get some much-needed sleep.

Oh hi … you’re still here?

Odds are you’re not.

Oh my life (I sound like my ‘old’ best friend – the woman known as Ladds…) – it has been YEARS since I wrote here. Well ok, maybe not years. But it’s been a while.

One of my pet hates is loud people. On a general level, I’m not too keen on ‘people’ as a whole. When stupid ideas come together in groups, you just know witch-hunts and government legislation to tax the elderly are afoot…

But loud people crunch it for me. I’m trying to read or sleep on the train, or work on an article and there’s always one person who insists on holding a very loud conversation on the phone. But it’s not just to the receiver of the call, is it? No; it’s to the whole damn train.

As a writer, I should be thrilled that it’s so easy to eavesdrop on the personal life of Tracey and Paul, who have recently had a run-in with the Jobcentre because Tracey forgot to mention Paul lives with her and now Paul is up the creek because he ‘twatted that p**** at the pub’…

The drama and local dialect is abundant and flavoursome but my patience isn’t. If you know what it’s like to be interrupted whilst reading, then you know how infuriating it is to read the same sentence over and over because it refuses to sink in. It takes a great deal of restraint and character to stop yourself from launching the book at the source of your distraction.

Even worse is when I’m writing and I have to put up with a running (and dim-witted) commentary about the journey I’m on from the passengers behind me. Which is what happened when I last paid a visit to Cornwall. I never thought it possible to keep a flatulence reference alive in the same conversation for two hours but obviously, I was wrong.

Loud people are everywhere. What astounds me is how groups of ‘loudies’ compete to ‘out-loud’ one another, no matter what the situation. Is it really that important to hold the floor? Does the behaviour of your genitalia after a warm bath really make a difference to the lives of everyone who now knows about it because you can’t help but shout?

Perhaps I’m an unusually quiet person, or perhaps I just have good social etiquette, but I tend not to yell in order to be heard. But then how can anyone hear me when everyone is shouting? Easy.

Mime.

That’s a crowd stopper…

Tactical operations

Going out is a very complicated process for me. It’s not as easy as picking up my keys and wallet and then skipping off into the sunset. For one thing, I can’t drive at the moment so I have to arrange transport, which is usually my Dad because he’s normally willing and has nothing better to do and he’s also the person I trust the most to help me escape from any uncomfortable situations.

Situations that are the reason for why going out is so difficult. When I say ‘going out’, I mean taking a quick trip to a shopping area to grab or look at something Amazon is unable to adequately demonstrate to my unquenchable curiosity. Going out isn’t setting myself up for a night on the tiles – I hate that, it’s boring.

When ‘going out’ comes around, I have to take into consideration where I’m going, how long I’ll be and how fast I’m going to have to walk in order to get through the crowds as quickly as possible. I make a base assumption about where I’m going and always accommodate for the fact that there are going to be people everywhere, like cockroaches.

I have to calculate the odds that what I’m looking for is going to be there – usually, I talk myself into believing that it won’t be there, just to avoid disappointment and give me some added relief, like a sort of prize you get at the end of a competition to compensate you for the ordeal.

On top of that, I often concoct witty sentences and dramatic escapes to cover the probability of having to communicate with other people and it all goes terribly wrong; they might not understand me because I talk too fast or they might not know what it is that I’m looking for and then make a huge fuss and call the manager who will look at me like I’ve just emerged from a nearby swamp.

Before I’ve even stepped out of the house though, I have to make sure my satchel is packed with essential urban survival kit: keys, phone, money, water, headphones to drown out the world, sunglasses (even indoors and in bad weather) to make it easier to avoid eye contact, and a paper bag. For cases of hyperventilation.

Everything is executed with paranoid, maniacal precision when I go out. Everything that could possibly go against me is calculated and recalculated, even when I’m finally home and a few days have passed. I spend a lot of time thinking of what can go wrong and what could have gone wrong.

Of course the best plan, the one most easily executed is the one where I don’t go out at all.

It doesn’t take much.

No wonder people wipe their feet on us. Manners? Please. Sensibility? Indeed. The bottle to follow through on a decision? Oh wait… that one’s a bit too much.

It happens. That weird occasion when predictability goes against our expectations in such a violent manner that it fulfils the things that we were hell bent on wishing it to do. Basically, predictable surprises us by being … predictable.

The thing that might leave you wondering (or worrying if you’re that way inclined) is whether this predictability was drawn into existence by the collective will; the unquenchable desire to master everything even when it’s clear that our control is just an illusion, something to make us feel secure in light of the devastating obviousness that we have little control over anything. We foresee and we remain adamant; we invent and our monster devours us.

So what do we do in the shadow of our vision? We shit ourselves.

I have boots and a good number of layers to wear, a hat and headphones, gloves and whatever else I need. I have stamina and a good tolerance to the cold. I have a thermos. I have dedication, determination. I’ll take a shovel if I have to.

We predict snow and we shut down; the desperation to control cripples us.

It’s … just … snow…

Again…

I’m blessed, and cursed.

Cursed for many reasons, but blessed for the fact that something quite amazing happened today. I had to go to my local shops, so grabbed my jacket etc, jumped on my bike and peddled off into the proverbial sunset toward retail heaven. Well, as heavenly as retail can get in Hoo village.

As I went to chain my bike up, I noticed that my key was missing. Along with my mobile phone. I’d had them with me when I’d left. Panic exploded out of me and I set off, back the way I came in a fit of limbs, stricken screams and a near traffic accident.

It was my original belief that the phone and key had fallen from my pocket whilst navigating the speed bumps in the residential area, but to my surprise, I saw a recognisable black lump in the middle of the road that turns off onto the site. There was my phone. And key.

If that wasn’t shocking enough, it became apparent that a car had driven over my phone.

If I had been in an anime show at the time, my nose would have streamed blood when I discovered that my phone was unharmed, save for a small scratch on the bottom of the handset.

Blessed? I don’t like to attribute occurences like this to higher powers, but you can’t deny that I was lucky…

Next time, I’ll opt for somewhere quiet

If I’d have known I was to spend my Saturday off subjecting myself to Bluewater, I would have stayed in bed. Or even better, just gone to work.

What possessed me to brave the vast interior is beyond me, but it resulted in approximately twelve minutes of terror as I was faced with the task of finding my way out of Marks and Spencer.

One wrong turn later (possibly at the handbags), I resorted to following two women back from the “Blue Car Park” (how I ended up there, I don’t know) which would have looked worryingly suspicious if I had continued to follow them beyond the French Knickers.
After finally spotting the exit into the shopping centre somewhere in the distance, I made a beeline amongst the throngs of shoppers, near clambering over trolleys and buggies in my desperation to be free.

It occurred to me, as I burst out of the shop front, that all the people I had passed somehow managed to make shopping look important. Their faces had hard looks on them, eyebrows knit together in concentration and eyes staring straight ahead at symmetrical patterns as fingers inspected sleeves and seams.

Could it be that Bluewater isn’t a shopping experience, but is actually a career?

It baffled me as I wandered past clumps of fashion that I could only assume to be people and felt sorry for the kids that were being dragged about by their mums, looking gormless. The truth is, that glazed expression may have been down the fact that every child I saw was eating a pot of frozen yogurt (a.k.a ice cream). These kids weren’t awed, they were stoned on sugary goodness.

I suddenly realised that this was how you make shopping look important. Put on your best drags and don your only pair of Gucci or Dolce and Gabanna sunglasses, and walk about with stylish paper bags for hours on end, as if you’re strutting up and down a catwalk (at this point, it helps to forget that you’re still in Kent and not London). Additionally, if you have kids, save yourself the embarrassment of being a parent by drugging them with confectionaries. They’ll keep quiet and you’ll remain gorgeous.

Adding fuel to the fire are the people who work there. I wandered into the O2 shop to look at my next upgrade – the Samsung U600. Yes, it is a commodity, but if O2 are going to give me a brand new, up-to-date mobile phone for free every twelves months in return for the pathetic £20 a month I pay, then I’m allowed to gloat. Little did I know that as soon as I set foot into the laminate-clad store, I’d be quietly stalked. Observed as I fiddled with grubby looking handsets on patches of plastic grass. Circled. Smiled at. Pounced upon like I was a juicy lunchtime snack. Do they not feed these people? Perhaps they’re threatened with thumb-screws or The Rack if they fail to reach their sales targets. Either way, the staff are no doubt there to make this the most important purchase of your life. LG Shine, or Prada…

In that moment, I came to understand that I was a form of anti-christ to these people. Why? Because I’m the savvy shopper. I don’t need someone to tell me about phones, because I have the power of the interweb at my command (apart from when my router crashes). Review it online and then brave the outside world to feel it in your palm, with Anthropophobia being the price to pay for a near life time of being able to make your own informed decisions without ever having to interact with people.

I politely refused assistance (by avoiding eye contact) and left before Bluewater Security were alerted to someone not actually shopping, but god forbid – browsing.

I had only been at Bluewater for half an hour before I began feeling doubtful of my role in existence. Chatham High Street employs at least two hours to achieve this.

My day was spent dodging Professional Shoppers with their armfuls of bags and fistfuls of buggies, and queuing – on a day when the seventh Harry Potter had been released. What was I thinking? Why did I even dare to consider indulging my bibliophilistic tendencies in Waterstones when I knew it would be packed with eager fans?.

I had gone to meet a friend for the day. A good friend. Unfortunately, having to spend so much time weaving, waiting and working through what we could manage in the ways of conversation made me long for the orderliness and isolation of MSN.

Popular as it may be, Bluewater does little for real social connections and even less for someone who just wants to sit down to a cup of green tea and muse over the tranquility at the bottom.
Needless to say, I won’t be taking any of my friendships there again. Unless I want to destroy them, leaving them to drown and shatter upon the rocks of hyper-consumerism.