My best friend and the world of schizophrenia

Its a quiet Thursday on the ward. Sectioned subsistence still possible even though London is suffering with the, ‘dust of death,’ as scare newspaper the Mirror has put it. Pollution levels over the capital are high and the world a little hazier than usual out of the window.  The ward is unbearably hot, adding to the sedated, lethargic atmosphere. I am struggling to write this as I am currently fighting off an overpowering drowsiness that is a side effect of my medication. I do intend to write soon on the treatment of mental illness with Drugs, however the focus of this post I do not tend to be on my own experiences.

I have been so inspired by many of my fellow patients stories, in particular a good friend of mine who is also under section on the same ward. We have lived together for two months, and as institutionalization would have it- we have also become good friends. The strange way that humans are so adaptable often strikes me living in a place like this- though it is very unnatural and surreal being imprisoned for no crime in an overheated and claustrophobic area for hours and hours at a time, we still manage to create normality in the surreal. My friend and I often sit together eating toast and jam, drinking horrific instant coffee and analyzing the morning papers.

I chose to follow Hemmingway, and ‘write hard and clear about what hurts,’ in regard to my experience, however I understand the deeply private nature of living with a lifelong mental illness, so my friend chooses not to be named . A large part of this is owed to the huge stigma that still exists. There seems to be a theme of Paranoid Schizophrenia being connected to violence and scare stories. Court cases, horrible news stories of some psychopath we should be afraid of. If you put into Google search ‘paranoid schizophrenia,’ one of the common searches attached is, ‘murderers.’ My experience of living with many patients who suffer with this illness is not one of fear or intimidation, actually one that has seen me witness immense vulnerability amongst sufferers. It is them who are often suffering with fear, confusion and heartache.

Schizophrenia literally means ‘split mind,’ and my friend is a perfect example of this definition being appropriate. There is so definitively two sides to him that I almost cannot believe he is one person. When I met him he was so sedated he could hardly keep his eyes open, he shook my hand with both of his for a whole minute, introducing himself continuously and telling me that he was an emperor, a king, a memory of God, a Mafia boss who ‘owned Sicily.’ Another friend on the ward told me that he had offered to kill someone for him when he previously had been admitted, and had been moved downstairs to isolation after behaving violently toward the staff and other patients. I didn’t know how to behave toward him. His speech was mumbled and intelligible and he seemed half sedated and delusional, so I took to smiling politely and nodding.

Now he sits opposite me talking with incredible eloquence and dignity.  As with many patients living on the mental health ward, if you catch them in moments of confidence the level of intelligent conversation is above much I experience on the outside world. In particular my friend, when he is well, seems to sometimes be able to express himself in such deep and articulate terms that I cannot believe what he tells me he has experienced has happened to him. This is the wisdom that comes from vibrations of deep pain, of hardship.

My friends story begins in a similar way to many of the people that I’ve met on the ward. A quiet clarification that Drugs have the capacity to play a disastrous catalytic role in mental illness. Growing up in the East London gutter and being vulnerable to peer pressure led him toward drug taking, the safety of protection, into gangs. ‘We were smoking weed, crack, heroin. I had never experienced any of my symptoms until I started smoking, weed especially.’  What he detailed to me of his experience with schizophrenia was far beyond what I had expected. I warn you I can only try to put into words aspects of the conversation, finding reason in the bizarre.  The darkest stories of his experiences with schizophrenia left me feeling like I had not seen the world.

His symptoms started with what he refers to as his, ‘magical blessing.’ ‘My whole skin began vibrating with incredible energy, like sexual pleasure. I saw the road of life, a never ending road with trees on each side and I began to understand the rules of the universe.’ My friend talks about this experience entirely objectively.  ‘The next two months I walked around London still with the magical blessing- I could look into peoples eyes and see their souls. I learnt about power, about love and about God.’ Most of his experiences, and indeed many of other schizophrenia patients I know, seem somehow religious and sexual. Being ‘magically blessed’ made him realize that he could access Gods mind and he says that amongst other things, he saw visions of the memory of genesis.  I ask him if he was still taking drugs during these two months, he said no and he has never since his first symptom of illness.

After two months the ‘Magical blessing’ wore off and so he was hospitalized after being arrested for a petty crime. My friend was sent to the old mental hospital in Mile End, which most ex-patients and indeed anyone that knew of the place, speak of in terms of dread. St Clements is a ghostly old gothic building straddling a large patch of land between the main road and the cemetery. A large chimney of an incinerator stands out into the sky giving the place the feel of a death camp.  Boarded up and empty, though proficiently creepy, St. Clements does not seem half as horrible now, abandoned,  than as what I’ve heard of when it was still functioning as a hospital.

He was nineteen, the same age as me, when he was first hospitalized. He describes this experience as hell.  ‘Do you mean it was like hell?’ I ask with some confusion, I don’t want to undermine him, or dig too hard.  ‘No,’ he looks me dead in the eyes, with no joke or doubt, ‘it was hell.’ He looks dark as he recalls the horror of St. Clements, a hundred patients on the ward, beds separated by curtains. He describes an incredible scene, the smoking room, ‘One sofa and cigarette smoke so thick you couldn’t see the other wall… and ash all over the floor like snow from hundreds and hundreds of cigarettes. I walked in and knew for sure that I was in hell. Dundee ward was hell without the fire.’

One of the symptoms he suffers from the most in his schizophrenia is ‘flight of thoughts,’ which he describes in this way, ‘every ten seconds you have a different thought. I am the angel of death, I am an emperor and can see infinity, I’m part of a never ending war between two ancient Gods- The thoughts are not connected to reality, but they become real.  You can’t prove the it is real but it is believed.’ He talks about each experience very frankly. The matter of fact tone he uses to discuss such bizarre sentiments threw me off a number of times.

In the 12 years since the first time he was sectioned the longest he has stayed out of hospital has been six months. My friend is one of the few patients to be treated using Clozapine, which is the last drug offered to schizophrenia sufferers who do not respond to any other treatment.  Mental Health drugs are controversial at the best of times, but the struggles I still witness with him are disturbing. ‘I sleep 14 hours a day sometimes.  The drugs are stealing my life. All they do is sedate me and that’s it. I have been treating myself for my symptoms, the drugs don’t do anything.’ He believes he is getting better through meditation and avoiding stress, similar to my own outlook.

‘They don’t understand my mind, I believe my mental capacity is beyond humanities understanding of what a brain is.’ He says with frank offhandedness. I stare into his wide eyes, and I know that the experiences he tells me of are not lies…yet it is not really truth either. Schizophrenia has no truth or untruth- he is right when he says it is beyond understanding. The usual ties of imagination are free to stretch into normal experience and warp the way the world is viewed. When he says to me that he has seen the creation of the universe through semantics, quietly over a cup of tea like we are talking about the weather – who am I to say he imagined it? As far as I know everything we perceive as reality could be imagined anyway, ‘life is a dream and we are the imagination of ourselves…’ as prophet Bill Hicks says. I understand that my friends boundaries of subjective and objective are frayed, he believes it was hell- so it was real hell. What he believes, sees, hears, imagines is not rationalized to create pragmatic reality . There is a deficit between what he knows is real and what is in his mind, and his reality like all of ours is created- but who is to say it is not equally as real? I know it is equally as felt.

 

 

On the experience of a Maniac Episode- A Breif Wonderland

On the experience of a Maniac Episode.

“Depression is a painfully slow, crashing death. Mania is the other extreme, a wild roller coaster run off its tracks, an eight ball of coke cut with speed. It’s fun and it’s frightening as hell, and i don’t know many Bipolar patients who would give it up.’   David Lovelace, Scattershot: My Bipolar Family

Having an illness like Bipolar has really made me realize some great (I think) truths about human consciousness. To what extent is a lot of what we feel only truly felt when in hindsight? Certainly, I have never known myself to have been in a Maniac episode until I have looked back over the period of illness. Behavior I did not question at the time, I will look back on and think ‘my god, I was totally bonkers!’ This brings me to a great question in Mental Health, is it at all possible to be objective about your own state of mind? Do you change your mind, or does your mind change you? Whatever state you are in becomes normality, so when in a maniac episode it does not feel as if you are speeding up- rather that the world is slowing down. The etymology of the term ‘Mania,’ actually breaks down to ‘Madness,’ or ‘Frenzy,’ then the verb, which I find particularly suitable, ‘to rage,’ or, ‘to be furious.’ My episodes of mania have been increasing in intensity over the last four years and each time seem to have been triggered by some sort of stressful life event.  In this post I intend to articulate and identify the experience of mania, the symptoms of which I am very familiar with, like those of any other intense state of mind that we as humans feel.

At the beginning of an episode I usually begin to feel a strange synergy of elation and agitation. The discovery of some great happiness and joy in which the world seems to be expanding and evolving beautifully before me. Experiences intensify and my senses begin working at higher levels. My mind flows so fast and with amazing clarity. Questions that have been stuck in my subconscious seem to knit together and become obvious. Ideas and thoughts all link together lucidly and with great rapidity, creating a feeling of being unstoppable and genius. I want to talk, and when I do talk I feel pleased that I am able to articulate so well, vocabulary is bubbling easily to the surface and I feel great confidence on the increase as a result of this. Here is a demonstration is the cyclical nature of Mania also, each symptom leads to an increase in the next.

Therefore, I also feel frustrated. People do not understand my new found excitement, energy, enthusiasm. ‘Why doesn’t everyone feel like me? Cant they see I’m unearthing the great ideas of our generation!’  This leads to agitation, restlessness. I cannot keep still. I start drinking a cup of coffee and realize I absolutely need to be smoking a cigarette.  I start smoking a cigarette and then suddenly am gripped by an urge to read the newspaper. I start reading the article and then suddenly am enveloped by the need to call a friend and tell her about a plan I have made. I cannot complete tasks yet I cannot do anything fast enough. As soon as I focus on something my mind tells me I should be somewhere else.

I can do insane amounts in one day, flying from one place to another.  During an episode in the months June/July last year I took to working fourteen hour days, seven days a week. For two months I took only three days off, to attend a wedding and go to a festival. I am inclined to be very sociable and can often bring myself to the center of new groups of friends with my high confidence. Often as my energy increases I begin to lose track of what I am saying, I can be conversing with someone and feel that my brain is going so quickly that I cannot fully remember the details of conversations. I may make plans I am unaware of , or talk about an experience with intense exaggeration-  without any awareness of the fact that I am not telling the full truth. I can become incredibly hard to be around, extremely overconfident, opinionated and argumentative.  Often I will be at the center of any debate or discussion and feel incredible energy and force behind my beliefs and deliverance.

As mania increases, rational sense decreases.  Every spontaneous and dangerous choice I am making is the undoubted right decision. Mania leaves me with a very diminished sense of consequence. This has meant that I have made a lot of very important life decisions as if I am deciding what to have for breakfast, ending friendships, long term relationships. Regardless of my financial situation I will go on huge spending sprees which have left me with troublesome financial situations.  Who needs 10 Fred Perry, Amy Winehouse collection silk polo shirts , each at 90 pounds? – Me, apparently.  Buying plane tickets has also been a habit of spontaneity . There is nothing that beats the rush of adventure, especially going away alone. The best times of my life have been during this part of mania. When I was sixteen, experiencing my first episode, I was travelling alone to Austria, getting drunk on the plane, having a huge adventure which was all mine. I often experience synesthesia, which means my memories are paired with visions of color, often purple or red.

I often have compared an episode to playing with fire. It seems great fun, you believe you are in full control, the danger is exciting. I stop eating as when I eat it feels like I’m being slowed down. I begin to sleep only three or four hours a night . In my recent episode I tended to walk late into the night in dangerous areas to feel a thrill and add to my feelings of invincibility. I become increasingly detached from reality, as is often the way when you starve your body of basic humans needs.

I become irritable and angry and take on a very self destructive attitude. My thoughts become so fast I can barely feel consciously aware of the situations I am in. I become very defensive and repeat phrases in my head over and over again, often in a mantra type way-‘fuck it,’ ‘fuck all of you,’ ‘I don’t care,’ Nothing seems to meet what I am looking for, nothing is enough, but I don’t even know what I am looking for myself. I tend to move increasingly toward wanting only sex and drugs, moving toward dangerous situations to fulfill this need for excitement.

When I reach this stage of mania is when I can become very prone to what doctors refer to as, ‘delusions,’ or in a more serious sense, ‘psychosis.’ I experience an odd of mind that I am not totally aware of the world around me and I find it hard to remember fully, so I rely partly on what others have told me. I talk to myself out loud a lot, with great speed and with huge exaggerated gestures and may shout and sing loudly when I walk down the street. I can remember a sense of it being better to avoid being totally aware of how you are feeling, as being disconnected from being out of control is less scary.  I tend to tune into feeling excitement at being out of control rather than the creeping sense of fear.

My own view of my apparent psychosis is obscured again by the fact that I have only experienced it from the inside.  If reality is subjective then what I experience is in some way real- even if only to me. So when I detail what I experience, bear in mind that though it is easy to dismiss as unreal or crazy to those who have an apparently stable state of mind- to me this has been as real as any other part of my life.

I begin to believe that I can see the future and I have psychic powers.  I realize that many events I have predicted before they happened.  I often will look at people and feel a very strong sense that they are destined to be someone important in my future… and often I am right.  I can be hit by a really strong feeling of dread, or excitement- and I feel that I know that either something really good or really bad is going to happen. I will look back over my entire life feel that I have predicted everything.  I try and tune into this as much as possible to be able to use it properly. I also have had experiences where I believe I have gained access to telepathy and have received messages from friends and even from my Doctor.

The quote I used at the beginning of the blog is a good synopsis of the Maniac experience. I do not think i would give up mania as part of living with Bipolar- during times of Mania I have had, as i said, some of the best experiences of my life… some of the best conversations, the best encounters and biggest achievements. Mania has two sides.  Elation vs isolation.  Adventure vs danger. If it were possible to be fully aware you were experiencing a maniac episode, then maybe it would be also possible to experience it only positively- however Mania has destroyed my life previously. It leaves you blind to fear, consequences and empathy. As i said- playing with fire seems great fun- until you look back and your house is burnt down. I have destroyed friendships, relationships and employment…left myself bankrupt and in debt,  put my loved ones in compromising positions through my behavior and caused others great stress and emotional damage. As with any High- you are destined to come down.

thanks for reading.

Sicily Scarlet

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Defining the Disorder, and Myself. 

Bipolar disorder (also known as bipolar affective disordermanic-depressive disorder, or manic depression) is a mental illness typically classified as a mood disorder. It is characterized by episodes of an elevated or agitated mood known as mania, usually alternating with episodes of depression. These episodes can impair the individual’s ability to function in ordinary life. Around 1% of the world wide population will suffer from some level of Bipolar in their lifetimes,’

Yesterday, the 30th of March, was world bipolar awareness day.  I didn’t even know myself until a few lonely posts on Twitter made me realise that some sort of empathy or understanding was due to take place. I put into twitter search the word ‘Bipolar,’ and was interested and to some level shocked by the resulting posts that I saw. Here are some amusing/ sad examples.

  • ‘’californias weather is so bipolar like i could literally wear a sweater & flip flops in the same outfit’’
  • ‘’These 4 frames that makes me cry and roll on the floor repeatedly but then makes me smile and laugh too im so bipolar’’
  • ‘’English weather is like a bipolar indecisive woman in a shoe store’’
  • ‘’I can’t get too caught up with someone, i get so bipolar. Either I’m in love with you completely or I wanna kill you, no in between’’
  • ‘’Most Pretty Girls , Either Bipolar Or Have Anger Problems🙎Or Just Crazy 🔫’’

At the moment I find this quite amusing. Trivialising something you don’t understand is surely something we are all guilty of. I decided myself that I have too much to lose from this illness continuing to not be understood in my generation. Using Pathetic fallacy to describe Bipolar is really nice in terms of poetry, but unfortunately these posts tend to fall under the term ‘ignorance’ to me. The difference in this case is that I have to take Bipolar seriously. Just over two months ago, Bipolar nearly took my life, and for  up to 30% of sufferers, Bipolar will transpire to be a terminal illness. So, though it may be amusing, to some level tragically poetic and infuriating to be around- it also must be taken seriously in terms of mortality.

My name is Sicily Scarlet and I suffer with severe Bipolar Disorder. Though I consider my illness to have been present in some sense for my entire life, the intense symptoms of Bipolar have been increasing and becoming more and more obvious, steadily from the age I think, of around 14. Despite the difficulties that I have suffered living with a mood disorder, I have generally managed to live quite a successful life until my illness took me down very violently the beginning of this year, 2014. Previous to this I have done well at school, generally managed to maintain good relationships and have got a place at a top university which I hope to be well enough to attend next year to study Politics.

When I think of Bipolar Disorder, I often prefer to use the old fashioned term of ‘Maniac Depression.’ This to me describes the psyche of a Bipolar patient with far more clarity than the modern term- Bipolar, which suggests that a sufferer is constantly either in a state of Mania, or in an episode of depression.      In my experience of the illness, this is not the case. New research also suggests that many people with the disorder suffer from, ‘mixed episodes,’ wherein its possible to suffer symptoms of depression and mania symbiotically. Though I personally have experienced both Maniac episodes and episodes of Depression, I have also experienced intense periods of mixed symptoms which can be extremely disturbing.  When I am in the heights of Mania or the darkest part of a depression I also am prone to what mental health professionals refer to as ‘psychosis.’ I am also diagnosed also with a generalized anxiety disorder, which manifests itself mainly in strong separation anxiety.

Currently I am living under section in an acute mental health unit in East London. After two years of struggling with medication, misdiagnosis and generally terrible illness , Bipolar has rendered me unable to live a normal life.  I am not allowed to leave the hospital with freedom.  I was admitted to hospital two months after a suicide attempt and a severe bout of depression which I was not medicated for. In this blog I intend to detail the difficulties of living with the disorder, to try and raise understanding and of the symptoms and empathy for the behaviors.  I would like to share my experience of how it feels to be hospitalized for a long period of time in an acute mental health unit, the effects of institutionalization and my views on the current crisis in Mental Health in the NHS, which I believe myself to be a first hand witness to. I will also share my opinions and experiences regarding medication and treatment for Bipolar, and the troubles I have had with misdiagnosis and GP referrals/ mental health outpatient services which I believe truly failed me as a patient suffering with a serious illness.

I hope this Blog can be helpful to any person that reads it. I write always with love, and hope for being a part of building a greater understanding.

Sicily Scarlet

Defining the Disorder, and Myself.