I wish one day, I could be stable
But I’m not sure, I’m even able.
Always up, then down;
Here a smile, there a frown.
I cry
Over people who died before I was born.
Don’t know why
A song can scratch me like a thorn.
I want to write
But I want to sleep
And I want them both
To feel very deep.
Red flower
On my wall.
Rose not a poppy.
Please don’t fall.
It’s 31 October. I painted my nails metallic green this morning, and they’re glinting at me as I type. I’ve gothed it up a little too, and I might dig out my black lipstick later, which suits me surprisingly well. When Hallowe’en falls round again, I like to mark the occasion, even if only in little ways.
It’s Monday, too, and BBC Radio 4′s new Book of the Week is Why Be Happy When You Could Be Normal? This autobiography is narrated by its author, Jeanette Winterson, who has a wonderful, colourful voice. Winterson’s first novel, Oranges Are Not The Only Fruit, is semi-autobiographical. I suppose one might say that she is returning to her roots twice over.
I first read Oranges when I was about 17. There had been a TV adaptation 10 years before. I believe it caused a stir, but it would have passed me by completely. I wrote about the book, in a dissertation comparing the works of three authors, who use child narrators to explore adult themes. The other novels were to Kill a Mockingbird by Harper Lee and The Go-Between by L.P. Hartley. The theme, and texts, were of my own choosing.
I’m twenty years younger than Winterson; and straight; and Scottish and I was raised by my biological parents, but I have never identified with a protagonist/narrator/writer the way that I did with Jeanette/Jeanette/Jeanette, on that first reading.
Jeanette’s mother was a Pentecostal Christian. My mother was, and is, although I doubt she’s use the terminology, a Pentecostal Christian. Evangelical, maybe. She’s technically at Presbyterian, but I don’t think the majority of the CofS congregation are that keen on her lifting of hands and tambourine rattling. They most certainly don’t go in for speaking in tongues.
My mother, if you asked her, would probably tell you she is ‘born again’. She found Jesus when I was 11. He was hiding in Celtic Park. This means that I was spared the kind of early childhood which the real and fictionalized Jeanette endured. My mother would not have subjected me to that kind of abuse, anyway, nor would my father have let her. My father, incidentally, is not a believer at all.
She did stop me from dressing for Hallowe’en though, until I was old enough to disobey her, and we had to all leave the house to avoid guisers. To this day, I love any excuse to dress up: a themed birthday party, a hen weekend, a night at burlesque club. Tonight, my mother will be with her bible group praying against the evil spirits. I don’t think the The Church of Scotland officially goes in for evil spirits.
My mother, unlike Mrs Winterson, was not in a position to claim that the devil had led her to the wrong crib, given that she bore me herself. She did, however, like to say, “That’s the devil in you talking”. And the devil is always trying to foil her plans. When my mother found God, she lost her reason. She has a strategy for dealing with criticism. She simply chooses not to receive it. Her hand raised in a Nazi-like salute, she asserts, “I do not receive that”. One isn’t really left with anywhere to go.
So, if you have a Pentecostal parent, what happens if you’re not ‘normal’? As a teenager, both Jeanettes fell in love with a girl. The radio adaptation of the autobiography is not far along enough for me to know what happened to the real Winterson, but the Jeanette of Oranges was subjected to an exorcism. An exorcism. In England, in the 1970s. She had a demon in her.
My mother believes that there is no such thing as mental illness, not the serious ones anyway. A schizophrenic is not really a schizophrenic, she has a demon in her. This is worrying in itself but my mother’s daughter has bipolar disorder and her very dependent sister is schizophrenic. I spoke to my aunt about this, a little, recently. I wasn’t trying to intervene or upset her. It happened when I was angry at my mother, for putting paedophiles and junkies and ‘reformed’ criminals before her own flesh and blood, as usual. My aunt, who is very vulnerable indeed, defended my mother, saying how much my mother had done for her. My mother is constantly berating my aunt, snapping at her, accusing her of having “verbal diarrhea” and telling her to shut up. My aunt just seems used to it. “But”, I said, “she tells you you have demons in you”. My aunt looked at me in confusion. “But I do”, she said. “I do have demons in me, and that’s why your Mammy takes me to her church”.
Although I didn’t have a manic episode until last year, I’ve struggled with mental illness for two decades. I was first diagnosed with anxiety when I was 11. I’ve just realised that’s the same age I told you she was converted. I shan’t dwell on that right now. My mother always prays over me when I’m ill, physically or otherwise. She used to try when I was on my way to an exam as well, but I wouldn’t let her then. I’ve never liked it. I hated it in fact. But it’s the speaking in tongues that scares me, terrifies me if I’m mentally unwell. If I’m really bad, and my body is sluggish, I can’t even escapre her. I’m trapped there. You might have seen the ‘speaking in toungues’ phenomemon one one of those Channel 4 documentaries about Evangelical Christians in America. If not, Wiki says:
A Pentecostal believer in a spiritual experience may vocalize fluent, unintelligible utterances (glossolalia) or articulate an alleged natural language previously unknown to them.
That is, speaking in tongues equals speaking gibberish. It is considered a gift. If you’re lucky, the Holy Spirit will speak through you. He’ll possess you in fact, but I guess possession is okay if it’s by a Holy spirit. An Anglican theologian once told me that there is no justification or foundation for this modern phenomenon in the Bible itslef. A certain text is wrongly interpreted. At the very beginning of Christianity, Christ’s disciples went out to speard the word. They travelled far and wide, and wished to share the Good News with each and every person they encountered, but they didn’t speak the langauage of all these strange lands. The Holy Spirit granted the early missionaries the ability to speak to those around them in their own language. It was an isolated event at a very speacific time in the history of Christianity. Anyone who thought she was speaking in tongues today, he said, was deluding herself. An interesting linguistic choice. If you were to see my mother speaking in tongues over me, I’m not sure you’d pick me out as the mad one.
I might be an adult now, but I ended up back at home after my diagnosis. She hadn’t changed, and, again, for a time, I wasn’t well enough to escape.
I saw Winterson interviewed a while back, on My Life in Books, alongside Alastair Campbell. (The next episode followed immediately. “Who’s the hot American”, said my partner? “Elizabeth McGovern”, I said, handing him Vanity Fair. “Who’s the old lady”? said my partner. “Debo Mitford, The Dowager Duchess of Devonshire”, I said, and then lent him Wigs on the Green.) On the programme, and across the radio waves today, Winterson speaks about her mother without any real bitterness, none that I can detect anyway. She seems to have put her demons to rest. I haven’t. Not yet.
I mentioned this in my last post, so I may as well share it with the blogosphere.
It’s about my most recent hospital stay, and focuses on the help I got on my way to recovery from other patients, and my partner. Most of the written responses I’ve seen to the experience of being in hospital focus on the staff, but I think that patients can really help each other too, and the support of loved ones is vital in the process of getting well.
I’m sure you’ll figure out the tune…
Amazing Place
My boy next door, how sly you were;
You taught me how to hear.
I once was deaf, but now i know,
Just how to change, my dear.
My darling friend, how kind you are;
You showed me how to read.
I once knew not, but now I do,
And I’ll choose what to heed.
My own John Boy, how right you were;
You helped me find my key.
I once was high, I once was low,
And you helped set me free.
My own true love, how wise you are;
You encouraged me to lead.
For I am I, and you are you,
And we are us indeed.
My ex-boyfriend asked me a few months ago — when we were still together — what it feels like to be manic. He’s very well-read in relation to bipolar disorder, in fact he knows a lot more about the clinical side of it than I do. He can’t know what it feels like to be manic, though, because he never has been.
It’s funny he brought it up, actually, as, when we were apart earlier this year, I started to write down what my own personal experience of bipolar disorder is, and has been. I wanted him to read it badly, as I’m not just a textbook case (even though I am, actually, pretty ‘textbook’) because everybody’s different, and that applies to those of us who live with mental illness too. In the end, he never got to read it, because I was hospitalised for — wait for it — mania.
This is what I wrote in my Pathways to Discharge diary under “How do I feel now?”, a few days after I was admitted:
“Very happy. I feel like I’ve finally seen the light. I understand the 10 Commandments. (Hallelujah!) and the 12 Step Program (Higher Being). I was always jealous of people who have faith-a-faith-a-faith, but now I know it is in me to trust in a Higher Being. I can call him/her whatever I want. I’m considering The Managing Director. Or Burt Bacharach.”
Being manic is also called, even medically, being ‘high.’ I can see why. I’ve never taken ecstasy, more out of a probably irrational fear of being that one person you read about who collapses and dies the first time they try it, than its illegality, but from what I’ve been told, the experience sounds very similar. Apparently when you are high on X, you feel blissfully happy, at ease, and want to hug complete strangers because you suddenly love them. When I’m having a manic episode — well, I’ve only had two, so there are no established patterns, I suppose — I want to be everyone’s friend. I chat away happily to people I don’t know, and can be a bit of a nightmare, in that I never shut up.
I buzz around, and never “sit at peace”, as my nanna puts it. I don’t sleep for nights on end. I feel wonderful and anyone who says I am ill is just plain wrong. My mind races and my mouth can hardly keep up. I get irritated by the slowness of other people. I have a tendency to think I’m the cleverest person in the room, although, to be fair, I often am. (More letters after my name than in it, baby!)
I see connections that other people can’t see. These aren’t necessarily imaginary. Last time round, my mind started joining dots, highlighting inconsistencies and bringing doubts to the fore. I came to the conclusion that my partner had been lying to me, and making things up. When I started to feel better, I dismissed these thoughts as the product of paranoia. It was seemed implausible that he could have lied about such fundamental and emotive things. It turned out I was right, though. On the one hand, my mania led me to the truth, but, on the other hand, it gave me an excuse to ignore the very same thing.
I have a tendency to find religion, but not necessarily in the Presbyterian way I was brought up, although I am drawn to the song Amazing Grace. Last time, I did a re-write of the lyrics to make it specific to my ward. (I’ve written elsewhere about Mania and creativity.) It’s ‘Grace’ though, not the Christian Father, Son or Holy Spirit. Maybe the Holy Spirit is the closest. It’s more like in AA where you just have to believe in the aforementioned Higher Being, whomever or whatever it might be for you. I feel that something bigger than me is guiding me, and that, if I follow the signs I will be saved. I think I equate ‘saved’ to getting out of hospital. This spring, I literally followed the signs, and literally followed the rule book, Welcome to Ward 4 , and I found a way of getting out unnoticed. (Probably best not to repeat it here.) It was a place that in theory couldn’t actually exist if both the signs and the rule book were right. Also, my own personal rule book was Kant’s Critique of Pure Reason (I told you I’m clever), but it could have been a religious text. How could Kant and Welcome to Ward 4 both be The Rule Book?
I didn’t leave, because I felt compelled to show that I knew the way out, but wanted to stay where I was until I got a formal discharge. I stood with one foot in the door and one foot out, until the police, believe it or not, turned up in relation to another ‘lunatic’ who had ‘escaped the asylum.’ The WPC asked me if I knew what would happen if I absconded, and I said, “Yes, but I could have by now, and I haven’t, have I?” The formal discharge was not forthcoming, by the way.
The religion, or whatever it is, doesn’t tend to stick once I get stable.
Finally, and this is hard to admit, even to myself, each time I’ve been manic, I’ve had psychotic episodes. I’d actually forgotten about this, but the first time I was manic, I thought my parents were sending me messages through an episode of American Idol. No, really. I was in the States, and they were back in the UK. I couldn’t quite manage to navigate the hotel phone system and the international calling instructions. Suddenly, all the songs on the TV seemed to about depression, and the clips of family members wishing contestants good luck, were actually messages from my parents. I don’t think I ever really forgot that this happened, it’s more like I repressed the memory because my brain decided it was better not to think about. I only remembered this episode when I was reading Bipolar Depression for Dummies (Fink, C and Kraynack, J, John Wiley & Sons) and it was mentioned as a rare but not unheard of manifestation of psychosis. If it’s very uncommon, then maybe it’s useful that I shared my experience here? Maybe I’m not the only one who’s had difficulty for one reason or another remembering or admitting it…
The second time I was manic, it was a little different. I think I had two audio hallucinations, and one visual one. It all seemed perfectly normal at the time, but, looking back, I feel that I just couldn’t have overheard or participated in conversations where people said things which were so specific to my life. I’m not talking horoscope generalisations, I mean people saying a former boss’ full name, with no way of having know it, or giving me feedback on random things I’d always wondered about. I’m not talking about voices inside my head telling me to do things, I mean me hearing the person standing beside me say something that they surely couldn’t have said. And even if there were a nun as a patient in my first short-stay ward, she probably wasn’t dressed like a Franscian monk.
It can continue to be upsetting now, as I wonder if anything else didn’t really happen. Someone was so adamant recently that she hadn’t texted something (horrible) to me that I didn’t feel able to trust my own memory, and I ended up seeking out corroboration, which I got, thankfully. I’ve had enough psychotic episodes already, so it would be nice if people were honest and didn’t mess with my head like that. If I sound bitter, that’s because I’m bitter.
One thing that I never expected, is that I remember more or less everything that happened during my manic episodes (even the things I bury resurface). The first one becomes a bit fuzzier after I was hospitalised and started being given medication that my body wasn’t used to. Up till then, though, I know, exactly what I said and did, and I’m not just mortified, I’m ashamed. Shame is incredibly common in the aftermath of a manic episode, but I didn’t know that until I started reading up on bipolar disorder on the internet. Although my psychiatrist and I had discussed it, there was nothing she could really offer in the way of help. That’s one of the reasons I’d like to see a psychologist, but I’ve been trying to get one free on the NHS for about 18 months, and my Consultant is not that sure that it would help. I’ve noticed a tension between psychiatrists and psychologists. Psychiatrists seem to think that a person needs to be ‘ready’ before they see a psychologist, but the psychologists I know personally say there’s no such thing as ‘too soon’.
I don’t feel as great a fall out came after my second manic episode. I basically self-diagnosed my condition and admitted myself to hospital, via Accident & Emergency, having failed to get anywhere with the Community Mental Health Team. I did not just need a glass of hot milk, and 2mg of Valium wasn’t exactly a solution either. I really shouldn’t have had to hospitalise myself, but, because I did take action at a relatively early stage, my ability to eff up my life, and bring shame upon myself, was greatly minimised.
Now, I would preach to anyone who cared to listen that mania can sometimes be avoidable. Chart your moods; look out for warning signs; recognise and avoid your stressors and triggers. If you’d don’t know what it feels like to go through a full-blown manic episode, do your damndest to keep it that way.
Creativity has been linked with mania. Many artists, using all forms of expression, have lived with bipolar disorder, from Van Gogh to Stephen Fry and the late Amy Winehouse. I’d hardly put myself in the same category as these giants, but I do produce sheet after sheet of writing when I’m manic. I also tend to blog a lot whan I’m hypomanic. I’m a bit concerned that I’m showing early warning signs of hypomania at the moment, so I’ve decided to start back on the dreaded quetiapine, but solely at night, and only with the low dose of 100mg.
Both times I have been hospitalised with mania, I have written a number of songs. They are definitely songs, and not just poems. I have no idea why this is, as I haven’t a musical bone in my body. After my first hospital admission, I threw away absolutely everything I had written in hospital, keeping only a framed sea shell thingy I’d made in a crafts group, and some collages I’d put together using magazines. I think I wanted to disassociate myself from my manic episode. Also, the songs were mostly about my then fiance (more on he and I will certainly follow elsewhere), and the relationship quickly deteriorated.
I did keep everything I produced during my more recent hospital stay. Sorting through it has been really quite painful. There are paranoid scribblings and endless letters of complaint re my treatment. Some of the complaints are actually quite valid and I’m working on turning them into a coherent letter to the care manager, or co-ordinator, or whatever she’s called.
The one thing I’m not ashamed of is the songs I produced. I will set one out below, and if no one points and laughs I might even see if I can get someone to help me write down the notes.
Can You Spare Me Some Change?
Can you spare me some change?
I gotta get home,
My babies are there
And they’re all alone./
I hate it when we,
Are far apart,
But at least they know,
I carry their hearts./
Sometimes we find,
The air is not clear,
And the way, it winds,
Don’t lead to our dears./
How I wish it were,
Just up to me,
How to represent,
Our family of three.
The song was inspired by my discovery, when I admitted myself to A&E, that no help is given to patients when they are discharged, in terms of getting them home, or to somewhere safe. One phone call is permitted. When I found out a male, clearly inebriated patient was not being given any assistance or travel voucher, I asked why this was. The nurse said: “He has two legs, he can walk.” The rest of it is based travel difficulties which have kept my partner and I separated during difficult periods in our lives. The last stanza is the most personal, and partly relates to problems with establishing whom should be considered your next of kin by a hospital. I also worked on a family tree whilst being treated.
Please let me know what you think, if you’d like to.
Where to start my story? A I said my ‘About’ section, I was first diagnosed with bipolar disorder in March of 2010. I’d had mental health problems for a long time before that though. My first serious bout of depression happened when I was a trainee solicitor in the early naughties. My first experience of anxiety and insomnia dates back to my early secondary school days. How many 12 year olds do you know who have to take Valium to go to school? Probably more now than then, actually.
My problems at school and in the workplace both stemmed from bullying. At school I was targeted for being a swat. I received the Dux of The First Year prize and got such a hard time the school subsequently did away with it. I couldn’t sleep, and was like a zombie during the day. A nervous zombie. The school did intervene, and the name-calling faded. I’m not sure if the two facts were actually related. Perhaps those involved just got bored, or moved on to someone else.
10 years later, I was bullied again, this time by my line manager. I was young, junior and, after only a year’s service, unsure of my place within the organisation, and indeed my competency. I was also living alone in a new town, and working with new colleagues. Before I moved there, my boss had had someone working under him five days a week. I was only assigned to him for three days a week, with the other two being spent in a different office. Unfortunately, he continued to assign five days’ worth of work, and failed to make any allowances for my lack of experience.
Added to this, he was on the verge of retirement, and didn’t really respect women within the legal profession. Once, he made me cry immediately before I had to appear in the Sheriff court in the same building. It was such a short journey I didn’t even have the opportunity to compose myself on the way. On another occasion, he said he would cover a court I was supposed to be running. However he had a late lunch instead, and didn’t tell me. The Sheriff, a notoriously difficult judge, was livid when no one turned up, and blamed me.
Eventually I requested a transfer. I also involved the union, and complained to the area manager. I was told that clearly the problem lay with me, as no one else had ever complained. I found out shortly afterwards that one of my predecessors resigned, purely because of the treatment he was receiving, and another turned up at a different office one Monday, and refused to go back. The senior manager either didn’t know about this, or was trying to sweep the matter under the carpet. I’m not sure which is worse. Although it was a relief to ‘escape,’ my manager wasn’t finished with me. He thereafter gave me a horrible appraisal, which questioned whether I should even be retained, and told outright lies. Fortunately my joint managers, at the second office I had been working at at the time, gave me very positive reviews, which balanced things out, and gave me back a little bit of the confidence I had lost.
It’s not just bullying bosses who I have had problems with. I had one boss who was incapable of managing himself, and his own workload, nevermind me, and I found this very stressful. The same man (for me, it’s always been male managers) told me after I had moved on, and was looking for a further education reference, that he was ‘very disappointed’ that I had taken two weeks’ sick leave. I was shocked by this. I really thought that mental health problems were accepted in the workplace now as the genuine illnesses that they are. Evidentially not by all.
