Tag Archives: Depression

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.


Over and Out

 I’ve seen this article doing the rounds on social media over the weekend. For the non-clickers in our midst, it’s a piece by Sarah Hepola about binge drinking and the experience of blackouts. She describes the experience of waking up in odd places, not certain how she got there or what she had done the night before. She talks about the panic, fear and confusion the blackouts could cause, and also about the freedom that went with being drunk. It’s an interesting piece to read from my own perspective – someone who doesn’t drink and never has, but who is no stranger to blackouts. So I thought I’d write a post of my own, what with having a blog and all.

People often seem surprised when they realise that I don’t drink. I don’t make a big deal of it, this one blog post excepted. There are two situations in which it tends to come up. The first is when someone is trying to offer me a drink and seems puzzled (or in some rare cases offended) by my request for a soft drink. I’ve met people who thought I was trying to spare them the cost of buying booze, or that they were trying to get me drunk, or who thought I was somehow being shy. In that case I will reassure them that there’s no issue, I just don’t drink. The other situation is when it’s medical. How many units a week? Zero. Yes, zero. No, I don’t drink at all. Yes, I’m sure. It’s surprisingly difficult to convince a GP that you don’t drink – I saw a GP in my teens who actually accused me of being in denial about an incipient alcohol addiction and it must still be in my notes, because I get asked about it to this day.

I’ve also never taken recreational drugs, which seems to surprise people even more. Not even a single experimental puff of a joint. If I can tell you what it’s like to be on opiates or benzos, it’s because they were administered in hospital.

Now, I realise that all of this is probably making me sound like a total fucking goody two shoes. I’m not. While clubs and parties aren’t really my scene, when I do go out I am quite capable of matching my behaviour to the people around me. I’ve had friends try to take my car keys away from me, thinking I was too drunk to drive because I was so giggly and nonsensical. I can disinhibit with the best of them when I want to.

So why, if I’m not completely uptight and joyless, do I not drink? There are two reasons. First, I absolutely fucking loathe the taste of alcohol. I’ve always been willing to try new things in case I someday find something I like, but every time I take a sip I get an overwhelming hit of ethanol and it’s really, really unpleasant. People assure me that this is what it’s like for everyone and the trick is to push through it and get used to it. But I never did, probably because of my second reason, which is this: I am a control freak.

Yes, I know, plenty of control freaks drink. Not this one, though. And this is where the blackouts become key to my story. Imagine the phenomenon described in that article  – finding yourself in a place you don’t remember going, having to piece together your actions based on what people tell you and any physical evidence you may have left, like receipts and the like. Now imagine knowing that this definitely wasn’t the result of drugs or alcohol. There’s nothing you can attribute this to except possible stress.

There you have my experience. These blackouts, or dissociative episodes, or whatever you want to call them, are bloody terrifying. I had a handful during my teens. Mostly they just consisted of lost time when I was at home, or classes that seemed to skip past in minutes. The first time I became aware that something odd was going on was while I was at uni, and in the early stages of my breakdown.

I found out about it one day when I phoned my parents and they were both furious with me. I didn’t know why, but I soon learned that I had called them the night before, quite late. It was an angry, rambling phone call, during which I said things that I would never normally have said to them. They were upset, understandably, and assumed that I had taken something. I hadn’t. I was certain I hadn’t. The last thing I remembered was heading out with some friends, so I checked with them. Sure enough, I had started acting strangely and had run away from them at some point. Someone had seen me in the Students’ Union using the payphones, which must have been when I called home. Apparently I had yelled at some kids for vandalising a bush and chased them down the street. I have no idea what else I did. I have no memory of any of these things. I just woke up the next morning as if nothing had happened.

After my parents died, during that strange, hermit-like era when I was living in their house, I think I had quite a few blackouts. It’s difficult to tell for certain, because I was living alone for much of that time. I’ve always been somewhat reclusive, and apparently I’m quite good at continuing to appear functional during most blackouts. But there was certainly something going on. Things would move and rearrange themselves around the house, odd things like my car keys being deliberately positioned in the middle of the hall floor, or things arranged in specific patterns. I tried not to think too much about it and laughed it off, calling it “my poltergeist”, but it seems considerably more likely that the actions were mine, just unremembered.

There have been other incidents, some of which frightened me badly. The time when I was on sertraline for depression was particularly bad. There are gaps in my memory that I find quite distressing. There would be times when I wouldn’t just find out what I had done second-hand, I would clearly remember having done something, only to find that I hadn’t – I’d lost some time and just filled in the blanks incorrectly. I had to come off the medication and just hope for the best.

Knowing that blackouts happen to me, prompted by nothing more than stress, makes drinking or taking drugs a really frightening prospect for me. I’ve been out of control too often, and I don’t like it. I have to try to get control and maintain it, to identify why they happen and do what I can to prevent them. The idea of doing something that I know could actually bring about a blackout… nope. Absolutely not.

Do I envy the people who can have a drink or a joint and not worry about this stuff? Yes. Bizarre as it may sound, I envy people whose blackouts have a clear-cut, understandable cause, and systems in place to support them as they tackle any problems they have with that cause. I’m still floundering around trying to figure out where this overlaps with PTSD and where it doesn’t and whether there’s some root cause that I’ve blocked out. It’s confusing and frustrating, and exactly the kind of thing that sometimes makes me wish I could reach for something that would help me relax.

I’ve written versions of this post before and never put them up. Talking about this openly makes me nervous. I fear being judged for it, that people will think I’m making it up or exaggerating or that I’m just insane. As ever, I write this in the hope that if there are other people out there experiencing the same things, perhaps at an earlier stage in their journey and wondering if its just them, they might find it and know they’re not alone. And for anyone who wants to judge me, there’s plenty of material here already, so I might as well just do it. When the bridge is already on fire, no sense in worrying about an extra splash of kerosene, right?


Knowing where I stand

There are some obvious difficulties inherent in living with mental health issues. There’s the apathy, the auditory hallucinations, the need to lock the car door three times. There’s the social stigma and the knowledge that by being open about it I might well cost myself opportunities. There’s the day to day management and constant updating of my CBT skills.

But among the weirdest and more difficult things is accurately assessing the severity of the issues. If you’ve never been “normal” or non-disordered, it’s hard to figure out how far from “normal” you currently are. (The world is full of people who try to say helpful things like “there is no normal”, “everyone’s a bit weird” and “you shouldn’t pathologise emotions”. Well-intentioned, but honestly, not helpful when you’re dealing with mental health problems. Yes, everyone has their idiosyncrasies, but there’s a difference between people’s quirks and actual disorders, and identifying mental health problems is not the same as pathologising emotions.) If you’re trying to figure out when it’s time to get help, you need to have some idea of how far into disordered thinking you’ve gone. Figuring that out requires observation of other people and comparison with them – for me, at least.

The tricky thing is doing this without letting it descend into a Crazy Contest. The point is to keep tabs on my own state of mind, not to prove that I am the Craziest Crazy that ever was Crazed. The difficulty arises from the fact that it’s hard to be objective and dispassionate about my own headspace, and there aren’t many reliable external criteria to help.

When I had my first and worst breakdown, the one where I stopped talking, eating or moving unless forced, that was categorised as Severe. Severe with Catatonic Features, to be specific. What I considered “getting better”, my shrink considered “Moderate”. I haven’t experienced full-on catatonia again, and I hope I never will. (Though just as a side note, this is what I mean about the difference between handling a disorder and “pathologising emotions”. I know what profound sadness and loss feel like, and I know what catatonic depression feels like, and I can assure you that they are nothing alike. What I was being treated for back then wasn’t “having feelings”.)

As of my last assessment, it’s categorised as Mild/Moderate. This is the best the headspace has ever been, so this blows my mind in two ways. First, those terms don’t feel like they do justice to the vast gulf between how I am now and how I was then. It feels like there ought to be at least a dozen different words standing between me and catatonia. Second, if this is Mild/Moderate, then what must it feel like if you’ve only ever experienced Mild? Or if you’ve never experienced depression at all? How does that work? My earliest memories of depressive feelings and behaviour date back to when I was only two or three. I’ve never been “normal”, there has never been a time in my life where I wasn’t this way. There are, apparently, people out there who do not live with depression, and I have no idea what that feels like. I genuinely can’t even imagine what it must be like. I’m fascinated by the concept.

That said, I’m fascinated with other people’s experiences of mental health in general. It seems like everyone has either experienced mental health problems or watched someone go through them at close quarters. It surprises me how many people I’ve met who have been hospitalised at some point. Bizarre as it may seem, the fact that I’ve never had to have inpatient treatment is one of those things which, in my darker moments, causes me to question the legitimacy of my own disorder. The “logic” runs this way: If I’ve never been hospitalised then I can’t have been all that bad, in which case my depression (etc.) is much less severe than theirs. Same thing with suicide attempts, I’ve never been caught in the attempt or ended up in hospital, so my depression can’t have been that bad.

Of course, that doesn’t take account of the fact that when I was catatonic, I probably should have been in hospital. If my mum hadn’t been able to take care of me, that’s where I would have been. Well, in hospital or dead. When I lived alone there was always an undercurrent of worry in my mind in case I misjudged myself and ended up catatonic again before I sought the right kind of help. I’ve always tended to go to ground when my headspace isn’t good, so it wasn’t unusual for me to vanish every so often. If I had slipped, I could have succeeded in starving myself to death. Would I have been far enough gone to merit hospital treatment? Yes. Would I have caused my own death without ever having been hospitalised or having any record of suicide attempts? Yes. So presumably these things are not good yardsticks for severity. They’re not legitimising experiences, they’re just experiences that people might have had depending on their circumstances. It’s a lot easier to end up getting sectioned if you have a disorder that causes you to behave strangely in front of other people. Disorders that manifest in withdrawal and introversion make it easy just to waste away unnoticed. That this could have been my lot still frightens me. That’s the thing I am guarding against.

On the flip side of this, I sometimes read  or hear about other people’s experiences and they seem milder than what I’m used to. I work hard to listen and read without judgement, but it’s an emotional topic connected to a strong fear, and I would be lying if I said that I’d never had a rogue thought along the lines of “Pfft, low moods, that’s nothing. Come and talk to me when you can’t feel anything at all, then you’ll know what real depression feels like!”

This is nonsense, of course Different people experience different levels of severity. I know that. I understand it. That’s why there are different categories. Also, catatonic depression isn’t the only legitimate form of depression. I’m aware of all of this. But when you’re dealing with mental health issues, it’s a constant battle to be taken seriously (both by myself and by other people) and to accept my own diagnosis and experiences as legitimate. When I feel myself slipping and decide to seek help, I feel bad about taking up my GP’s time because there’s still a part of me that doesn’t really accept that there’s a whole realm of depression that lies between “fine” and “catatonic”, and that I don’t have to be unable to function in order to justify asking for help.

This is why I feel it’s important for people to speak openly about their mental health, if they can. The more people there are talking about it, the better equipped we as a society will become to talk about it (I hope). The better equipped we are, the easier it will be to assess our own mental health and gauge how we’re doing. I often wish that when I had my first breakdown, the internet had been further developed. I had access to it and was using it in 2000, but the blogosphere was considerably smaller and it would have been great to have had access to the range of experiences that you can find online today. Future Jen-equivalents, I hope you find this and I hope it helps.

Still, as important as I believe it is, it’s just as important for me to remember that my mental health and dead parents aren’t all there is to me. They’ve been major influences on my life and my choices, and I’ve no plans to stop writing about them, but I think that for my next post I’m going to find a less angsty topic (and by that I don’t mean arts politics, the other major strand to this blog). I’m sure I can do it if I try…


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.


The Tyranny of the Telephone

The internet can be a daunting, even terrifying place, but there are times when I’m incredibly glad to have access to it. In particular, I find it very comforting to be brought into contact with other people who share the same apparently unusual behaviours as me. For a long time I wondered whether I was the only person who was genuinely terrified of the phone. By being open about my hatred of phones online, I discovered that it was a surprisingly common fear – amongst my friends, at least.

Have I always been this way? Yes, for as long as I can remember. It was easier back in the days when I was very small and being taught to answer the phone when it rang. The deal was that I could answer provided I said “Hello, how may I help you?”, answered any direct questions and then handed the phone over to Mum or Dad. At that stage I didn’ t have to worry about actually making the calls. As I got older and was expected to have actual conversations with the people who called, or – worse – to call people myself, the anxiety began to set in.

What am I scared of? Being judged and getting things wrong, mostly. Like the writer of this article – http://freethoughtblogs.com/blaghag/2013/08/why-are-you-calling-my-texting-device/ – I don’t always find it easy to hear exactly what people are saying on the phone. I’m very sensitive to background noise, and anything with more bass than a human voice will drown out whoever I’m talking to. I also find that hearing someone’s voice when I can’t see their body language and facial expression is like reading a letter with every third word blanked out. It’s a confusing experience and I find it difficult to trust disembodied voices on the ends of phones. Unless I’m talking to someone I know, really, really well (and sometimes even then), my stupid depressive conviction that everyone hates me tries to get out of control.

However, when I was younger it was easier just to shut my anxieties up and get on with things. I could talk myself through the fear, doing a kind of rudimentary CBT. I still hated it when I called my friends and their family members answered because that interfered with the script in my head, but I could do it without having a meltdown. I was never exactly comfortable with phones, but I could deal with them and even have long conversations with people I knew well. Then, as with so many other fears of mine, the trouble really began when my parents died.

To be absolutely precise, the trouble began when Dad was dying. My mum went quickly from diagnosis to death, and for the couple of weeks that she was in hospital we barely left her. Dad and I would dash home to wash, change clothes, top up our supply of cornflakes and peppermint tea for her and then go back. When Dad got diagnosed he was at a much earlier stage, so the plan was for life to go on as normal until the need for palliative care grew more pressing. A few days after he came home from hospital, he had a stroke and ended up right back there.

When Dad and I arrived at A&E I was warned that he probably wouldn’t make it through the night. He did. Then I was warned he probably wouldn’t make it through the next 48 hours. He did. I snatched a few hours’ of sleep in some unoccupied doctors’ quarters but didn’t dare go further away than that. After day three, the doctors encouraged me to go home, get some sleep, spend a bit of time outside the hospital. After I’d been home for some sleep and a shower, I went shopping. Specifically, I went looking for the kind of yoghurts my dad liked. As I pulled into the driveway, my aunt came and told me that the hospital had phoned and it was that “come at once” call. I went tearing across the city, terrified that I might be too late.

I wasn’t. Dad would survive for another four months, but throughout that time he would not only be dying of cancer, he would be at risk of a secondary stroke which would probably kill him. Since he was partly paralysed and I couldn’t handle caring for him on my own at home, he was transferred to the hospice. I practically lived at the hospice until he died, but I still had to go home for showers, changes of clothes and occasional time off and nights in a bed rather than a chair. My home phone and mobile numbers were written in large letters on a pinboard in my dad’s room and I have never been more diligent about keeping my phone charged. Every time I left the hospice I was just waiting for my phone to ring, dreading that it would be the call telling me to come back because we were at the end – or worse, the call telling me that I could take my time because it was too late.

As it happened, my dad never had another stroke. In fact, he made an incredibly impressive recovery from the first stroke. It was truly galling to watch him battling to regain his vocabulary, his diction, use of his right hand, while at the same time watching him wasting away as the cancer took hold. (He even got as far as being able to recall most people’s names accurately, though he always confused mine and Mum’s. That was painful.) He died slowly, his body shutting down bit by bit, and I was with him throughout it. But even though I never got that call telling me he’d had a second stroke, the fear of it never left me. I learned to associate ringing phones with bad news, and that’s why my mobile lives on silent.

After Dad died I was subjected to harassing phone calls on the house phone for some considerable time. That didn’t really help with the phone fears. Upwards of five times a day, any time from morning until the small hours, a particular member of my family would call and leave long, rambling, often threatening messages on my answering machine. (In retrospect I should have reported it to the police, but it’s amazing what you don’t do when you’re newly orphaned and made promises to your parents. Or I should have changed my number, but I was hoping against hope that I wouldn’t be in that house for much longer and I would change my number when I moved. To change my number would have been an admission that I wasn’t getting out my dead parents’ house any time soon.)

So, none of these things really helped me to deal with the existing fear of phones. I have mad CBT skills, but it’s an inadequate weapon against this particular demon. When my phone rings I am convinced of the following things:

1) Someone I love is dead/dying.

2) Failing that, someone I love now hates me.

3) Failing that, I am in some kind of massive trouble with someone over something.

4) Failing all of those, the person who used to leave those message has found me again. (This one is why I NEVER answer calls from numbers I don’t know or withheld numbers. EVER. My job makes it necessary for me to have my contact details available, which means that occasional calls from unknown numbers are inevitable, but that’s why I have voicemail. If a client leaves me a voicemail I expect that they’ll leave their name and ask me to call them back. If a friend leaves me a voicemail I expect it to be an emergency, because they all know everything I’ve written in this post and that I don’t appreciate being put through the phone fear unless something is wrong. Friends who want to chat to me know to text me first so I’m expecting their call. People who call from an unknown number and don’t leave a voicemail… I HATE THEM ALL. When that happens, I get those joyful feelings of “they’ve found me, it’s all going to start again, how much do they know, have they found where I live, am I going to have to change my number/move/call the police”. And this goes on for ages, just because some people won’t leave a fucking message. Thanks! Thank you so much! I love reliving traumatic experiences just because it’s too much work to say “This is X, I’m calling about Y, please call me back.” If it’s important enough to warrant a phone call, it’s important enough to leave a message. If it’s not important enough to leave a message, why are you calling me in the first place?)

This is why I love email. And Facebook. And Twitter. And video calling on Skype. And blogging. And texting. And pretty much anything else that means I can communicate with people without phone calls. Nothing beats a face to face conversation, of course, but if that’s not an option I’d rather use pretty much any means of communication rather than the phone.

There’s more to explore here, so I will revisit this subject at some point – as always, I’ve written until I couldn’t write any more and need to step away from this topic for a bit. The external influences on my fear are pretty clear, but it would be easy to get stuck on them and not look at the root causes. There are issues here concerning control, feeling unable to communicate with people, feeling that people are incredibly difficult to understand but that I have to keep trying and trying to do so. All the things that pushed me towards theatre, essentially. Though, sadly, I don’t think that “don’t phone me, just write me a play and I’ll write you one back” will ever catch on.