Tag Archives: Scenic Route

A Provocation for the Declaration Festival

Tonight (technically last night, since it’s about 1am) I gave a provocation at the Declaration Festival. It was for the closing event, responding to Article 24 of the Universal Declaration of Human Rights (the right to rest and leisure). I was delighted to be part of it, particularly to be in the company of Jenny Lindsay and Harry Giles and their excellent, deeply personal responses to the topic. 

My own response was likewise personal. Unsurprisingly, I came at it from the mental health angle. This is the text…

 

Hi. I’m Jen. You might already know that. I’m never sure how much you know.

 

Thanks for coming. Not that you had a choice, but still… thank you.

 

I hope you like the weather. I chose it specially. I thought it would be a good introduction to my mood, you know? A bit grey. Frosty. Kind of a foreshadowing thing.

 

It’s really nice to see everyone here today. What’s even nicer is that I’m pretty sure that most of you are real. You look real.

 

Except you. You, not so much. I’m not sure whether I’m hallucinating you or not, and it’s not really polite for me to ask complete strangers whether they’re real or not. Normally I wouldn’t call attention to you, just in case you are a hallucination and everyone thinks I’m crazy for interacting with someone who isn’t there. I’d wait until someone else has demonstrated that you’re real to them before I said or did anything involving you. It’s a bit convoluted, I know – the easiest way to establish your reality would be to touch you, but there are two problems with that. First, if you’re not real then this entire room full of people would see me waving my hand through empty air. Second, if you are real then – wait, actually, it’s three problems. Because the second problem would be that I’d just started pawing at a stranger for no apparent reason, and the third would be that while we were in physical contact you might be able to read my thoughts.

 

That’s why I’ll avoid shaking anybody’s hand if I can. You seem like very nice people, and I’ve no doubt your hands are clean and everything, but I’m sure you’ll understand that I don’t really like letting people read my mind until I get to know them a bit better. It makes job interviews and networking sessions a bit of a bitch. Especially when people don’t employ me or don’t reply to me, because then I wonder whether it’s because they saw something in my mind that they didn’t like. I wouldn’t blame them. There’s a lot in there that I don’t like. And here’s an interesting thing – I’ve never succeeded in getting work from someone whose initial greeting involved a kiss on the cheek. I hate cheek-kissing. If touching my hand gives you access to my thoughts, kissing my cheek is like plunging head-first into them. So I’ll keep my distance and run the risk that you’ll think I’m stand-offish. I get that a lot. Stand-offish, reserved, arrogant, bitchy… I just don’t want to let you into my head, that’s all. I’m sorry. It’s not meant as a slight.

 

And now I’m noticing that all of these people are staring at me and that means I’ve been concentrating on you for far too long, trying to figure out whether you’re real. That suggests that you’re not and that I’ve been looking at an empty chair for all this time. So they think I’m weird already. And it’s not that they’re wrong – I’m well aware that normal people don’t have these kind of hallucinations – but I would rather they got to know the professional side of me first. The functioning side. And now they haven’t. Again.

 

The worst thing is that it didn’t have to be this way. I’m in control of this situation, after all. This entire room is part of my story, it’s a construct made in my own mind, so in theory I could turn it into anything I like. Surely, if everything here is the product of my will, I could have manifested a scenario in which I walk into the room and you all automatically think I’m amazing? I could have dreamt up people who have been waiting their whole lives to hear public speaking skills like mine. Why would I imagine a situation where people look at me with long faces, or sneakily check their phones while I’m talking, or think I’m crazy just because I sometimes see things that aren’t there?

 

Oh. I’m sorry. I’m so sorry, you look like you’re having a terrible time. Is it just to do with this? Or is it something bigger? If I’ve imagined you, if I’ve made you exist, have I given you an existence that’s that bad? I’ve done that before, and I feel pretty guilty about it. So if I have… If I have then I’m really sorry, but I don’t know what to do about it. The easiest thing, the usual thing, is for me to steer clear of other people. If I can manage my environment, it’s easier to tell when things are real. It limits the possibilities, but not in a bad way. Just in a way that makes life more manageable. Less exhausting.

 

Because that’s what this is. Exhausting. Every time I’ve been in treatment, when I’ve explained the experience of this lovely combination of schizotypal ideas of reference, magical thinking and good old ADD, that’s what my various therapists and head-shrinkers have said. “That must be exhausting.” Every time. And they’re right.

 

They’re right.

 

This is my punishment, my penance, the price I pay for bringing you into existence and making you miserable. The price of inhibited dopamine uptake, deficient serotonin production, of a genetic quirk that triggered an intermittent madness in me. A mind that never stops tormenting me for the real and imagined things I’ve done. A brain I can’t trust, can’t ever turn my back on. A reality in which I can never, ever… rest.

 

And that’s why I’ll always struggle with Article 24, the Right to Rest and Leisure. For someone like me, with a mind like mine, the management never stops. No amount of recognition or legislation will ever be able to force me to let up on myself. The coping mechanisms have to be constant, otherwise they won’t exist at all.

 

But because of that, I appreciate everything that leaves me with only this battle to fight. The wider the recognition of the right to rest and leisure, the more I feel like I have breathing space. Time to myself, time to hide from the world and focus on quieting the noise in my head. Knowing this to be my right makes me feel better when I see the judgemental faces that my brain conjures up looking at me as if I’m lazy or workshy or seeking attention.

 

Are they judgmental, these faces? Your faces? Are the expressions I see on them real? Are the faces themselves real?

 

I don’t know, and I don’t think I’ll ever have enough energy to reach a conclusive answer.

 

All I know is this.

 

I’m tired.

 

And I need to rest.


You wanna know how I got these scars?

Most people don’t notice the largest scar on my face. It hides in plain sight. It’s very pale, I’m very pale. But it’s quite long, starting about an inch above my left eye, running all the way up my forehead and ending about an inch and a half past the hairline.

The smaller facial scars are the ones that make their presence felt, because they’re the ones that interfere with the shape of my right eyebrow. It always looks a bit oddly plucked.  This annoys me far more than the deep, pale scar on my forehead.

Then there’s the scar on my left knee. It’s ugly and unmissable – or at least it would be if anyone ever saw my knees. That seldom happens. I don’t have much of a summer wardrobe, living in a place where warm weather is not abundant, but even the skimpiest of my dresses tend not to show off my legs. There’s not much about my body that makes me feel self-conscious, but the scar on my knee does. I hate it.

All of these scars are from the same incident, and they all turn ten years old today.

On the 8th of March 2005 I was involved in a five-car pile-up. I was still singing back then, and I was on my way home after a performance. The crash took place on Queensferry Road, just past the Quality Street junction heading away from town. Having grown up in the north-west of Edinburgh, it’s one of those places that has always been part of the landscape of my life.

At about 23.30, someone swerved out from his side of the road and onto mine. Despite the time of night, the road was busy. There was no evasive action I could take. All I could do was brake and hope.

The approaching car hit me. The car behind hit me. Apparently two other cars hit mine as well, though I don’t know how. My awareness ends with approaching headlights and the thought “I fucking refuse to die here” and resumes in the wreckage, watching blood dripping onto the airbag and realising it could only be mine. My passenger door was open and someone was telling me to stay calm and wait to be cut out of the car.

With impeccable shock-logic, I reasoned that if I didn’t have to be cut out there might be some chance that my car – my Mum’s car – might be saved. So I unbuckled my seatbelt and climbed out. Via the passenger door, because mine was staved in. As I hauled myself out I noticed that my left wrist was probably broken. Didn’t clock the multiple pelvic fractures, though. I staggered around for quite a while, trying to get someone to tell me what had happened and whether it was my fault (at this point I couldn’t remember the events prior to impact), before the paramedics arrived.

The twenty minutes or so that I spent in that ambulance were among the worst in my life. I was bleeding, frightened, in pain – and when the paramedic asked me if they should call someone, I had no answer. I desperately wanted my Mum and Dad, but Mum had been dead for over a year and Dad for eight months. Instead I lay there, trying not to freak out as they strapped me into the neck brace, and wondered what time it was and which of my friends would not mind being disturbed. I knew I was nobody’s first priority. It was an incredibly lonely certainty. I asked them to call the friend I had given a lift to that night, on the grounds that she would probably still be up, then I channeled my fear and loneliness into bickering with the paramedics about how long it would take us to get to the hospital. They said ten minutes. I said that from Queensferry Road to the ERI with a head trauma patient was never ten minutes. I had some vague memory of Mum telling me that ambulances don’t speed or put the siren on when the patient has head trauma, and I knew exactly how quickly you could get to the hospital, whether by staying within the speed limit or by breaking it, thanks to Dad’s tests and then his stroke. In those facts, in that knowledge, there was a little bit of them. It was the best I was going to get. Those poor paramedics…

What followed was a jumbled, nightmarish experience. In that overheated A&E ward I drifted in and out of consciousness. Sometimes I’d come to and someone would be doing something – plastering or stitching me up, wheeling me off for scans, taking blood. They took blood so many times. I was terrified that they’d found the same cancer in me that killed my parents. I had been warned that I might have it too and opted not to be tested. They kept taking my blood and not telling me why, and I was sure that they were making certain before telling me I was going to die. I didn’t have cancer, of course. I’m still here. It was just bad luck that my first couple of vials got contaminated.

By the end of the night, as the shock and morphine began to wear off, I knew that I had been in a crash with a combined speed of 100mph. I had five pelvic fractures, damage to my pubic bone and sacrum, my left wrist was broken and had been re-set, the laceration in my knee went all the way to the joint, glass had been removed from my right eyebrow area, and my forehead had been split open. Apparently my skull was visible, but no-one would give me a mirror. I can understand why, but honestly – how many chances am I going to get to see my own skull? Hopefully not many, but I would have been really interested to see it while it could be seen.

Scar 1

The doctors who treated me expected me to be in hospital for at least a month. I was having none of that. The hospital smelled of nightmares. The last time I had been there was when Dad had his stroke and I spent two days waiting for him to die (which sounds brutal, but we knew about the terminal cancer so swift death from a stroke seemed like a far kinder option). I wasn’t going to spend a minute longer in that place than I had to.

I forced myself back onto my feet and was home a week later. In retrospect, I shouldn’t have done that. I might have avoided some of the permanent damage if I’d stayed in. But… I couldn’t. Not that being at home was much better, in a hastily set-up bedroom in what was usually the dining room. That was where we had laid out Mum’s coffin. To me, it always smelled of formaldehyde. I managed two nights in there before I became convinced that if I stayed there I was going to die too and started dragging myself up the stairs to my own bed. I had specifically promised the doctors I wouldn’t do that, but needs must. I had thought that I’d have someone to take care of me while I got back on my feet, but… well, let’s just say that I learned a few excruciatingly hard lessons about trust after I came home from hospital. I was on my own, negotiating the house with a crutch in one hand, a cast on the other and a massive feeling of being kicked while I was down.

I healed, mostly. The facial scarring, as I’ve said, healed cleanly. The one on my knee stayed hideous, but easy enough to conceal. I never regained full strength in my left wrist, there was some permanent damage to my lower back and my neck, and I was left with involuntary eye movement and deteriorating vision after the head injury. I haven’t needed a walking stick for crash-related reasons since 2007. My confidence didn’t recover, though. I learned how alone I was. I learned a very particular kind of fear. It threw everything I had lost into sharp focus. And even now, ten years later, I can’t stand the sound of car crashes in films and TV shows. If I don’t see the crash coming and cover my ears in time, the trauma reaction kicks in and I start twitching like a fucking idiot and have to fight not to scream.

That’s quite a legacy for someone’s brief fuck-up. To this day, I do not know why it happened. I don’t know whether the other driver was high, suicidal or having a seizure at the wheel. I don’t know whether he was suspended or banned from driving. All I know is that he was male, speeding, alone in the car, and he escaped with just bruises. That’s what I got from the police and hospital staff. I don’t even know whether I should be angry for him or sorry for him. All I know is that something this person did, voluntarily or otherwise, left me with damage that will be with me for the rest of my life. Scars on my face, my leg and my psyche, and I still don’t know how I’m supposed to feel about it.

Scar 2

 

At least I could feel legitimately insulted by the compensation I was offered. Someone – his insurance company? – offered me £440 to compensate me for my medical expenses. I set the cheque on fire. £440 barely covered the amount I had to spend on getting to and from the hospital for cast removal, stitch removal, physio and god knows that else. It did nothing to cover the ongoing physio or my glasses or contact lenses. Those are costs I’ll always have to meet out of my own pocket, because someone drove his car into mine. I could have fought for more, but I was a traumatised 22 year old with no family and no-one who would support me through that process. I just couldn’t deal with the paperwork. I couldn’t handle reliving it and having the validity and severity of my injuries questioned. Dealing with the horrible, arbitrary nature of what had recently happened was enough, and if someone, somewhere was willing to price my well-being so low… fuck them.

Ten years on, I’m not entirely sure why I’m writing this. I feel the need to mark the day, almost to the minute. I need to remember what happened and how it felt, and how difficult it has been to set aside over the years. The reminder of the car crash is there every single time I look in the mirror. Facial scarring is strange. I’m incredibly lucky that it wasn’t disfiguring. It so easily could have been. But even so… it’s my face. Mine. My visual identity. And it’s got this big line down it because someone caused me to get hurt.

I choose to own it. Back in the ghost tour days I used to rub lipstick into it to make it look recent and livid, because it freaked people out. I knew it had the capacity to freak people out. When people do notice it, it’s ghoulish. I went to the release of the last Harry Potter book with my scar proudly displayed because sometimes you just have to make the joke before anyone else does (and believe me, when the scar was still easily visible I heard every fucking Harry Potter joke ever). I part my hair in line with the scar. I refuse to hide it. It’s barely visible, but I’d rather leave it available to be seen than brush my hair over it and look like I’m trying to hide it.

Bizarrely, I sometimes catch myself wishing that the scar had not faded quite so perfectly. Sometimes I wish it had stayed visible so that it didn’t look like I’d made an effort to conceal it. I haven’t, and I never did. The scar is a visual signifier for something I haven’t forgiven or forgotten, something I probably should forgive and forget but I don’t know how, because I don’t understand the event itself. If I could just be angry about it or just know that it wasn’t his fault, I could feel something fairly. Instead I feel nothing but confusion and pain, even now. I would probably have let go of the emotional pain years ago, were it not for the literal, physical pain that accompanies it. I feel the pain, it makes me angry, and all the feelings come flooding back.

I’m not sure I want to let go of the anger, anyway. Destructive and unhealthy it might be, but it’s mine. When I began to let go of the anger regarding the bereavements, what I found underneath was something much more complicated and harder to deal with. I don’t know if this would be the same. It might not be. But if it is… it’s easier to be angry. I know how to do that. I’ve mastered the art of a nice, passive rage that sits below the surface, kept at bay until I need it. Any time it starts to burn a little low, I can look in the mirror and the scar is right there to refuel it. Long, white, less visible than it was, but clear enough. A reminder of 2003 – 2005, and the last of the three events that hurt me badly and shaped the course of my life. The last of the Decade.

Scar 3

(This was taken earlier today. Ignore the facial expressions, this is what we call “resting brunch face”. It’s just that the scar was noticeable, and it prompted this post so I thought I should include it.)


After the detour…

Hello, blog. Long time no write.

I’m still here, I’m still alive, and I’ve been meaning to update for just over a year. So why haven’t I?

2014 took its toll. Well, from October 2013 onwards, really. It’s nothing I haven’t mentioned before, just the usual Dead Parents stuff. Hence not writing about it. Hence the constant desire to write about it curtailed by angst about writing about it. Am I making sense yet? Probably not. This is why I’ve been so quiet.

I was expecting the anniversaries to be something of a problem. Perhaps that was a self-fulfilling prophecy, but perhaps it had to be. As I’ve said previously, I’ve always struggled to balance the desire to move on from the grief with the necessity of making that grief mean something. If the grief means something, if their deaths were truly significant in my life, then the anniversaries had to hurt me, and the more it meant the worse the pain had to be. Self-inflicted? Partly self-inflicted? A natural consequence, but one I need to feel that I could, in theory control so I convince myself it’s self-inflicted? I have no idea. Honestly, I have absolutely no clue how much of the pain I generate myself and how much is an inevitable result of the pain of bereavement. I can analyse, I can guess, but I can’t step far enough away from myself to get a clear view.

However, while I may not be able to get enough distance from myself, I finally have enough distance from the events. At last I can start to look at that period as a whole – which I need to do in order to lay claim to what happened and turn it into something I can use and take ownership of, rather than something that controls me. But it’s something I can’t do without feeling it all over again. Essentially, over the course of 2014 I had a very quiet, gradual and protracted version of the breakdown I probably ought to have had in 2005.

This manifested as paralysis and lockdown, which is typical for me. Back in the aftermath of the bereavements/injuries I would move between periods of being apparently functional and periods of shutting the world out. During the former, it looked like I was coping. In fact it was the lockdowns that were keeping me going and allowing me to process things. Making myself look functional has always been how I’ve outrun emotions and pain.

The trouble with pain is that it’s so bloody overwhelming. I can feel my way through it, learn to understand it and eventually control it, but doing so is all-consuming. I can’t do it and have a social life. I can do it and work, because I can plough all the emotional stuff into my writing. Fictional characters make excellent receptacles for anguish, and they’re great company. Other aspects of my work, specifically the ones involving human interaction, are less easy to integrate. Putting words in the mouths of non-existent people is fine, but conversing with real ones, whether in writing or in person, is harder. They’re a lot less easy to control, and when I’m trying to manage the pain I don’t have much room left over for uncontrollable things.

Which brings me back to why I’ve been so silent here. Firstly, I’ve written plenty about the Dead Parents and the grief here. There’s nothing more to be said. Except that there’s everything still to be said, so much that if I wrote a thousand posts I could barely scratch the surface. It’s futile and/or necessary, and either way it’s overwhelming. It’s self-indulgent and therefore unjustifiable, and/or it’s helpful to other people and therefore more responsibility and consequence than I can handle just now.

I’ve meant to write, and I’ve wanted to write, and again and again I’ve thought “I must write about this”. Then I’ve opened WordPress and found that I couldn’t. This is what I do with emails, too. I know who I need to contact. I plan the content meticulously in my head, then I open Gmail and can’t touch the keys. There’s no point, it’s all been said, or it hasn’t but either way the interaction will take up more energy than I have and it will make the pain worse. I really don’t want the pain to be worse.

So that’s what’s been happening. But now there are things I need to use this blog for, and I’ve started a project elsewhere that will (I think, or at least I hope) let me balance the pain and the output in a useful way. Cryptic? Hell yes, because I haven’t decided whether I’m telling people the specifics of the new project yet. It might just be for me, for the present at least.

Time to start writing here again. I can just about deal with interaction again. I think. We’ll find out. Welcome back to the Scenic Route.


When a belief is not a belief

There will be a lot of things in this post that I’ve touched on in the past, but I’ve never explained the full extent of what’s been going on in my head over the past year.

I’ve mentioned before that it was the 10th anniversary of my mum’s death in October and will be the 10th anniversary of my dad’s in July next year. I’ve written at length about my experiences with depression and a wee bit about ADD and PTSD. I know I have a tag for Schizotypal Personality Disorder so I must have spoken about it somewhere, but I’ve never really gone into it in depth because it’s less well-known and harder to explain. But it’s a factor in what’s going on at the moment (or at least it seems to be), so… here goes. I don’t claim to be an expert on this. I’m just someone who lives with it, and I’ll try to explain what it is, what it feels like and how it’s affecting me as clearly as I can.

Schizotypal Personality Disorder is a schizophrenia spectrum disorder. It involves obsessive rumination, anhedonia, eccentric behaviour, inappropriate emotional responses, magical thinking, social withdrawal and anxiety, strange means of expression and occasional hallucinations. I remember the psychiatrist who diagnosed me, back when I was 18, explaining that as someone with StPD I would never see the simple solution to a problem if there was a complicated one available. Apparently the big difference between StPD and schizophrenia is that with StPD, you can still tell when what you’re experiencing is not reality.

Over the years I have learned how to live with and control my symptoms. Getting the obsessive rumination under control was a huge personal triumph, achieved through CBT and visualisation and relentless discipline. My means of expression changed gradually, influenced by years of blogging. By writing for an audience and reading other people’s writing, I got the hang of how other people sound. I gradually let go of my unusual patterns and word choices (though a few little things remain – read enough of my writing or listen to me talk and you might spot my obsession with patterns of three). I learned how to tell delusions and hallucinations from reality – most of the time, at least.

The difficulty – and this is the really tricky thing to explain – is that sometimes I find myself in situations where I don’t believe my beliefs. Ten years ago, when my parents died, they were the only people I truly cared about. (Failing to form close relationships outwith your immediate family is a fairly typical StPD thing.) Those events planted the seed of a rather unhelpful idea – specifically, that the people I love that much will die. That my love can bring about the death of whoever receives it. The basis for this belief seems to be that if my life were a fictional narrative, that’s what I would expect to happen next.

Now, on the one hand, I am well aware that this cannot be the case. The world just doesn’t work that way. I do not live in a novel. What happened to my parents was statistically improbable, but that makes me the victim of a misfortune, not deus ex machina or a particular stage of my journey as protagonist. My love is not some kind of deadly force.

On the other, I know it is true. I’m talking about the kind of absolute certainty with which I know my name, or that the face I see in the mirror belongs to me. It is this knowledge that makes me feel so bloody guilty about loving my husband, because if I know that my love will cause his death. So I feel guilty and selfish for putting him in danger, and I live every day with the fear that my belief will prove accurate. Every time I come home I experience intense anxiety from the moment I arrive at  our building to the moment when I am actually in the flat and have seen for myself that he’s still here, still alive, not imaginary. This is not rational or reasonable. I should be able to leave the house without becoming convinced that something bad will happen to my husband. I should be able to unlock my front door without my heart pounding in my ears. I talk myself through the rational argument every time. Usually, delusions respond to repeated dissuasion and a certain amount of CBT. This one, however, is very strong and extremely resistant to everything I throw at it. It has not diminished over time. If anything, it has grown stronger.

That’s  a big part of the reason why I’ve been so antisocial this year. I’ve skipped so many get-togethers because I just can’t manage the usual social anxiety on top of this. I’ve always been a little bit freaked out by large groups, but usually I’ve enjoyed hanging out with people on a one to one basis. Not so much this year. This year I’ve been a lot more withdrawn because my head is too noisy, and also because as this belief gathers strength, it seems safest for everyone if I don’t let myself feel too close to people.

That’s a tough one to explain to people. “Sorry, I can’t meet because I’m really busy just now” is a much easier excuse to understand than “sorry, I’m worried that being friends with me will cause you harm so I’m just not doing the interaction thing right now”. I try to explain verbally when I have the energy, but honestly, talking this through takes a lot out of me and it’s easier just to write about it and hope that the message gets through.

The reason it takes so much out of me is that I fear people’s judgement. I know there will be people who look at this and think “well, you know that belief is nonsense, why don’t you just stop giving in to it?”, missing the fact that I don’t give in to it. I fight it every single day, I win minor victories every time I succeed in doing what I want and need to do without letting this stop me – but I haven’t won the decisive battle that gets it out of my life forever yet, and that’s not for want of trying. I also know that there will be people who write me off as completely crazy because I have a schizophrenia spectrum disorder and they don’t know enough about what that means to realise that they’re not unsafe around me. And I know there will be a few who think this is just attention seeking. It’s not. Even I am not masochistic enough to want the kind of attention that anything involving the “schizo” prefix gets you.

I’m writing this partly as explanation for why my 2013 has been quieter and less sociable than previous years, and partly because I’ve shied away from talking about anything explicitly StPD-related here in the past. I write about my mental health because I feel that if someone like me can’t be “out” about it, what chance is there for people working in less accepting worlds than the arts? Avoiding the issue of StPD was beginning to feel like a betrayal of that purpose, and an act of cowardice.

So there you go. A bit of insight into my head and hopefully into StPD as an everyday thing. I don’t feel like I’ve given you an accurate picture of how powerful and terrifying these beliefs can be, but I don’t know whether I can. I’ve been searching for the words for a very long time, and finally it felt like I should just get this much down and see whether the more minute, intense stuff follows later.

Hopefully some of this makes sense to people who are not me.


Adventures in Mental Healthcare: Hope

Today marks the start of Scottish Mental Health Week. As usual, whenever we reach an awareness day that applies to me, I feel annoyed that it’s still necessary. It’s 2013, aren’t we supposed to be sufficiently advanced and well-educated that we don’t make stupid judgements based on sex, age, orientation, race, whether you’ve ever had a physical or mental illness, or any other damn thing that people don’t have a choice in? Wasn’t this all supposed to be sorted out by now?

Maybe it was supposed to be. But it’s not, so for the present I will continue trying to reconcile my understanding of why we need these awareness exercises with my anger at the fact that they remain necessary.

I got involved with this year’s Scottish Mental Health Week unintentionally. I write ten minute plays for Jo Caulfield’s Speakeasy, and it just so happens that tomorrow’s Speakeasy is embracing the Mental Health theme. My play, Hawthorn & Candlelight, is not about mental health issues. It’s a comedy about a book of spells, so I suppose that if you were determined enough you could read it as an exploration of magical thinking and trace its roots in my own adventures in Schizotypal Personality Disorder, but that wasn’t my intention in writing it. I wrote it as a bit of pre-Hallowe’en fun and that’s about it. If my contribution fits the theme it’s not because of the play itself but because of what I am – mentally ill and “out”.

The fact that it’s Mental Health Week also makes me think it’s a good time for an update about my own situation and how things are going. Last time I wrote about this I was struggling to get access to the help I needed – most importantly, someone who could advise me on medication. I finally gave in and played another round of Russian Roulette with the meds, allowing myself to be put on fluoxetine to keep my serotonin levels in check. So far I’ve been fine – there’s none of the nausea I got from paroxetine or the memory loss and anxiety spikes that characterised my experience of sertraline. However, I’m still on a low dose just now. The real test happens in winter. At some point I usually tip from chronic dysthymia into a Major Depressive episode, and that’s when I have to increase my dosage and find out if my body can handle it.

I was also trying to find a suitable form of therapy to complement the drugs. I’ve been doing CBT on my own for over a decade and it’s a particularly useful weapon to have in my arsenal, but it’s not a magic bullet, and I have hit a point where either I need a different kind of therapy or help with expanding my CBT skills. As it stands, CBT helps me to combat depression and it was fantastic for dealing with OCD and StPD. Having got these things to a point where I can manage the symptoms, I now find myself dealing with issues that are more PTSD-related. I really want to get to a point where I don’t have nightmares, hypersomnia and a wide range of triggers that stimulate fearful, avoidant reactions. I want to be rid of the paralysing terror that accompanies the belief that everything I love dies.

Getting this kind of help is, as I have chronicled here, not easy. CBT with community psych nurses didn’t help me, because the CBT they were teaching was all stuff I’ve been doing on my own for over a decade. Eventually I lucked into an appointment with a GP who seemed to understand, and I made a particular effort to let the mask slip. I’ve been dismissed too many times for not appearing to be crazy enough because I can still do things like bathe, brush my hair, dress in a manner that makes me look pulled-together. I can still do these things until I am pretty far gone, because I have lots of practise.

During my first major depressive episode I learned that allowing myself to look depressed attracted attention. I didn’t want attention. I wanted people to stop noticing me, not ask me stupid questions about whether I was all right, to look the other way while I quietly got on with the task of destroying myself. So I wore make-up long after I stopped caring about my appearance. I wore my hair up to disguise the fact that it hadn’t  been washed in days. The way I dressed didn’t change, because at 18 I wore a uniform of black velour trousers, black t-shirts and sweaters. There was no tell-tale day when I started wearing jogging bottoms all the time, because there was nothing in my wardrobe that would allow me to live the cliche. For several months, as I gradually stopped eating and talking and dropped out of one class after another, I still looked like my normal self. Eventually I lost the ability to keep it together and began to look gaunt and dishevelled in spite of my repertoire of tricks, but I held out for a long time. By the time I started to look depressed, I was too far gone to seek help of my own accord.

So now, when I know I will be talking to a GP about my mental health, I make a conscious effort not to conceal the effects of my mind on my body. No make-up. No dry shampoo. I try not to think about the appointment until I get there so that I haven’t prepared what I’m going to say and how I’m going to keep my voice level while I’m doing it. When the familiar feelings of pain and fear arise, I try to let them show. After more than a decade of training myself not to show those feelings, that’s no small task. It’s not easy to bring that stuff to the surface because I never trust that I’ll be able to get on top of it again. But if you look like you’re coping, they assume you’re coping, so it has to be done. After many years of trying to tell doctors how badly I was doing without having to come right out and say it, I finally did. I explained about my convoluted suicide attempts and self-destructive behaviour, told them that even now, when I’m happy and loved and things are going well, I’m also depressed and fearful and every winter I dread that this might be the one where I just can’t take it any more.

The message got through. At last, I got an appointment with a psychiatrist. By this point I had started on fluoxetine, and the psychiatrist advised me that it was probably my best bet just now, which was comforting (if a little on the late side). He referred me on to the psychotherapy department at the Royal Edinburgh, so I finally had to bite the bullet and get over my fear of going there. Previous experience led me to expect a 45 minute triage appointment, during which I would have to try to give a potted account of myself and what I was looking for. Fortunately, this was nothing like my previous experience…

I had three triage appointments in total, all with the same doctor. There was time to give a full explanation of all the previous diagnoses and experiences and life events. The doctor talked me through my options and made some suggestions, and between the two of us we figured out the next step. I’m now on a waiting list for individual therapy to help me work through the PTSD. The down side is that the waiting list is long, so it may well be next February before I start – but simply knowing that the wheels are in motion helps immensely. In the meantime, I know what my options are if things get too difficult around the anniversary of Mum’s death or over the winter. I feel much better informed. And because this is being done on the NHS, I’m not freaking out about how to afford it.

After so many false starts, getting this far is a massive relief. When people talk to me about their own battles with the system, it’s really nice to be able to say “don’t give up, it is actually possible to get help” rather than simply sharing their despair at getting nowhere.

Keep trying. And keep talking. I might not always have the energy to respond to the comments and private messages I get after these posts, but I always, always read them and I always care.


Decade

As the sporadic nature of my blog posts probably indicates, I’m not finding it easy to write about what’s going on in my head this summer. Writing fiction? Not a problem. The things that are going on in fictional people’s heads are just fine. But my own is another matter.

The trouble is the anniversaries. On October 23rd it’ll  be ten years since my Mum died, with the 10th anniversary of my Dad’s death the following July (we’re just coming up on the 9th just now). I don’t know why the tenth anniversary should seem more significant than the 9th, but it does. Probably because it’s a decade and having a word for the amount of time that has passed makes it feel larger and more of a milestone.

Ten years ago I was 20 years old and living with my Mum and Dad. I’d moved back in after my first major depressive episode and was just gearing up to move out again. I had learned a hell of a lot from going through depression. I had been self-employed for the first time. I had arranged my first solo trip abroad. I had booked my first professional singing gig. My relationship with my parents had survived a pretty hellish time and we’d found our way back to solid ground. For the first time, I felt like we were three adults rather than two adults and a child. I felt like I was finally getting the hang of this life malarkey.

That lasted for one summer. Just one. I got back from Austria on the 18th of September. By the 3rd of October my Mum was in hospital. She had been having pains all year which had been dismissed as the menopause. The diagnosis suddenly shifted and became cancer. On the 14th we found out it was pancreatic. On the 23rd she died. I couldn’t believe how much things could change in the space of a month. Honestly, I still can’t.

Of course, the changes didn’t end there. My Dad’s death, the car crash, a good friend’s death, the two and a half years of being unable to move out of my dead parents’ house, all of that followed. It all took its toll and helped to shape my expectations for the future. Without realising it, I internalised the idea that if I love people they die, and if I value things they get taken from me in a painful way.

Being stuck in my parents’ house for so long was incredibly painful and I struggle to explain why, because I don’t know what frame of reference to appeal to when I’m talking to other people. It felt like being checkmated. The situation was completely out of my hands and there were no moves I could make. I couldn’t afford to buy, I had no rental history or guarantors, no-one I could move in with, and no idea how long the situation was going to drag on for. I couldn’t even redecorate and make the place mine, because that would have meant destroying something that was very special to my parents (that house and the way it was decorated were part of the long-term aspiration that got them out of their council estates and into the life they wanted). But more importantly, it would have meant conceding that I was going to be there for a while, and that was not an option. I might have had to tolerate the situation, but I did not have to give in to it.

However, there was another problem with being stuck there. It was completely the opposite of what I had wanted from life. I moved out at 17 because I couldn’t wait to get out and start my own life. Moving back when I was ill was galling, but I was determined that I would get myself back on my feet and start again. What I envisaged was a life of moving around a lot, working in different places, being ready to take off to somewhere new at short notice, underpinned by the security of knowing that I always had a home to go back to if I needed it. It’s the kind of life that I see most of my friends in their early to mid 20s living now. Instead, I found myself with a property to look after and legal issues to deal with. I was faced with the realisation that if I decided to freewheel my way around the world now, I would be doing it without anywhere or anyone to come back to. Perhaps there are people who can handle that kind of isolation, but I’m not one of them. I need a little bit of stability underpinning my chaos, so I had to rethink the kind of life I was going to build.

I began a complicated game of hide and seek with myself. I would let myself care about things, about ideas, about career options, about people – but never too much. I always had to be able to look at the thing in question and say “I would be sad if I lost this, perhaps it would stop me in my tracks for a while – but I would survive it, it wouldn’t break me”. That way I could reassure myself that I was still functioning, that I hadn’t cut myself off or shut my emotions down as a result of the loss I had suffered, but at the same time I wasn’t risking too much. Every new connection with another person took me out of my comfort zone a little bit, but I never set foot beyond my safety zone.

That continued until 2011, when I realised I couldn’t go on like that any longer and completely revamped my attitudes towards pretty much everything. The way I work underwent massive change and I finally found my feet as an artist. I moved back from London. I fell in love. We got together, moved in together, got a cat, got engaged and got married in a very short space of time. I had forgotten that I had it in me to be that impulsive and uncalculating. At this point, I am starting to feel like I’ve got the hang of life again – and that is fucking terrifying, because I remember what happened last time.

So I am spending this summer trying to silence the thoughts that tell me that I’m not allowed to feel happy or secure, and that it’s only a matter of time before the other shoe drops. It’s completely irrational to believe that I can bring harm to people just by loving them. I know that. But the little voice in my head that says “Yes, but look what happened last time” isn’t big on listening to reason, and it’s a pretty large dose of fear to live with. This is why I’m going back to therapy. I cannot let my life be governed by an irrational belief. I will not remain paralysed by fear of 2003 – 2005 happening again. I do not appreciate the last vestiges of schizotypal behaviour trying to re-establish their foothold and getting in my way.

It’s not 2003 any more. That’s the important thing. And that’s what I need to get into my head somehow.


Picking up from roughly where we left off…

Hello blog, it’s been a while. May is always a bit of a crazy month. I’m not sure whether this is to do with seasonal shift or whether it’s a pattern I learned at school when it was always exam season, but the anxiety and depression always seem to squeeze a little bit tighter in May. It was also the Month of Many Deadlines, so between one thing and another I didn’t get anywhere near WordPress. But here I am now. Hello again.

There are plenty of things I’ve been meaning to write about, but I’ve been in the grip of depressive thinking recently. I get to the stage where I can’t face writing about anything because I’ve got the Demon in my head telling me that no-one is remotely interested and there’s no point in writing. My energy diminishes, so the act of writing out my thoughts becomes considerably harder (I am eternally grateful that I had solid plans to work from for my freelance gigs). It’s a significant danger sign for me, because I am always in the mood to pick apart my own psyche unless I’m getting depressed, and I have to be quite far gone before I lose the will to write.

Which brings me, by means of a completely seamless and not at all clunky segue, to the subject of a quote I see doing the rounds on Facebook. It’s attributed to Dorothy Parker, but I have no idea whether this is accurate and I am being too lazy to check. It goes like this “I hate writing. I love having written.”

Apparently many of my writer/aspiring writer friends agree with this, at least to the point where they’ll re-post it. I see an extreme version of this sentiment in some of my ghostwriting clients, who want their name on a book without the hassle of actually writing it. For me, it’s the other way round. I love writing. I really enjoy the actual process of stringing words together and typing them into my laptop, watching the word count rack up. Writing longhand is even better. There is something so incredibly beautiful about putting ink on a page. I like the sensation of forming letters, I like watching the ink turn from wet to dry. I never write with cheap ballpoints if I can avoid it,  because it’s a waste of an experience. Gel pens, fountain pens, rollerballs – those are delicious to write with. When I learned that my husband had a favourite type of pen, my heart skipped a beat.

When I write, my brain calms down a bit. My head no longer feels like a browser window with dozens of tabs open. My focus narrows. I never get as far as a single tab, whether literally or metaphorically, unless I’m in hyperfocus, but I get closer than when I’m not writing. I create a playlist for each project or I put on a film or a series with the right voices to help me get absorbed in the task. I don’t answer the phone (any excuse). I feel more settled.

Then I finish whatever I’m writing. That’s when we ditch the calm and move onto the storm. Goodbye enjoyable act of crafting words, hello maelstrom of self-doubt and anxiety. That’s when I have to actually read whatever I’ve written and see all the flaws and clunky bits staring back at me. It’s horrible. It’s so much easier when you just don’t finish things, which is why I have a “Bits and Pieces” folder. All my favourite stuff is in there. The half-formed ideas that live in that folder are the best ideas, because I haven’t got round to destroying them yet.

I get over it, of course. When I’m writing for other people I don’t have the luxury of all this anxiety. When it comes to my own work, I freak out a bit more. Especially when I write plays, because then I have to hear what I’ve written at some point. Then I sit in the audience and second-guess the reactions of everyone around me. I do all the things I tell everyone else not to do, like measuring the reactions my piece gets against anything else I’ve seen recently and trying to work out whether I think audiences are the best people to assess my work or whether I think they’ll enjoy anything that’s dressed up the right way. It’s fun. My demons get some healthy (for them) exercise. I get to question the extent to which the demons really live in my head and to what extent they’re part of the tortured artist persona that I love and loathe in shifting measure. (Some days it feels like actual mental health torment, some days it just feels like I’m a bit of a wanker. Both statements are true. Sometimes concurrently. Like I said, fun.)

If I were able to skip straight to “having written” without the actual writing bit, I couldn’t do it. All the anguish and none of the good stuff where I spend days in front of the keyboard, wandering the internet to find the music and snippets that keep my brain ticking over, doing stuff with words? Hell no. The angst! I can only imagine.

The next post will be more upbeat. I wrote a play for the Fringe – my first commissioned play, I get paid for it and everything – and now that it’s had a couple of drafts and there are actors involved I’m starting to like it again.  There are things I’d like to say about it, and I should get in practise before August rolls around and I have to start telling people to go and see it.