Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts

Friday, May 21, 2010

Anyone for Pingpong?

To those who know me well, it won’t exactly be news to read this. They’ve heard it all before. They even love me for it. However, for those who don’t, here it is.
      
I, Clare, don’t fit in. Anywhere. Never have done; never will. The only place where I feel remotely at home is with other people equally as estranged as myself. Even then as some kind of group gradually forms, I never fully feel part of it.
     
Welcome to the human race, I hear you cry.

I’ve tried on various identities throughout my life (as though they were ill-fitting raincoats or top hats). And I spent the first twenty years of my life feeling lost as to what my identity might even be. It was only when I became Buddhist that I began ‘exploring’ different sides of myself. I ditched my long black skirts for sky-blue dresses stitched with swirls (gazing at them helped me slip into blissful, meditative states). I went on the road with like-minded people. I experimented with ‘open relationships’ (placing values of ‘freedom’ and ‘letting go’ above the humiliation of having to smile at parties like someone had just stuck a fork up my arse as my beloved seduced some hippy dippy chick with perfect tits.) I saw Buddha nature in everyone. Made 'spiritual' friends. 'Found’ myself. Lost myself. Found myself again. Then I realised - I still don’t sodding fit in.

Within the Buddhist movement in which I was involved, I was encouraged to give up my name and my personal vision, supplanting it with another, greater one. I could be an individual as long as I took on board someone else's interpretation of Buddha's teachings and swore my faith on it. A big part of me wanted this. But I was still, on some level, doing as I was told. And I was doing it alongside people who at best possessed grace and compassion as well as insight into their own and others' lives, but who at worst were nutters you wouldn’t have given the time of day to had they not been wearing a skull mala or able to harmonise brilliantly on a Vajrasattva mantra.
     
So I left and became ‘an artist’ - a writer. Maker of music. Poetry scribe. I kept going with the fucked up relationships but moved into a flat on my own where I no longer had to put up with people’s rows about veggie sausages or Tantra or why one person had 'inadvertently’ shagged the other's boyfriend. I shut my door - the world and Enlightenment could fuck right off.
     
It’s a shame about loneliness. And it’s a shame that being ‘an artist’ brings with it all the same bullshit everything else does. I replaced a genuinely deluded idea that I could escape the pain of being alive by getting Enlightened with a genuinely deluded idea that I could transform that pain into great stories and poems that would bring me a purpose in life (and an income). That I’d fit in somewhere – into the world of books and writers. Hey, I’d make songs and maybe I’d become some kind of pop diva (even if my songs were about sticking ex-friends in freezers, burning down cities ,and ‘deep-throating’ large mulberries). I’d find my place – not in renouncing the world, but in reclaiming it for my very, freaky own.
     
Oh dear. I spent five years filing my poems away, writing a blog read by approximately 3.5 people and performing, ooh, at least twice. So then I decided on something else. This time I wasn’t going to shy away from the very thing I’d kept at least half-shoved in the closet most of my life.

Monday, October 19, 2009

The Fit

I'm up late, trying to figure things out. Stuff that can't be figured. Hooray! Let's hear it for the stuff that can't be figured.
     
My mind hasn't made much sense of late, the epileptic fits getting worse since my last post. However, to my intrigue, my mind has become radically more interesting to me. Like a film I never understood before, now I watch it not even caring that the script is strange and the actors keep improvising.
     
Where did all the usual props go? Last Wednesday, I fell out of time, landing on New Cross High Street, clinging to a friend, unable to keep my eyes open, or even sit up, short-circuiting myself. After an hour, terrified, unable at times to stop myself from crying, I attempted to make it to the station, my friend at my side, determined to somehow get me home.
     
As I sat on the train, having finally got a seat at East Croydon after clinging to a window frame for forty-five minutes, trying to go with it... 'just go with it Clare', I wondered if this might be it. Surrounded by Ipods and copies of The Metro, late night workers with exhausted, sweating faces, I'd slip down this seat and never get up again. The book would remain unwritten. And all the obsession, all the love, what would it matter to me as I trickled away into white nothingness? A wonderful story. That's what my life would have been. A wonderful, fucking painful story. The End.
     
However, as the commuters gradually disappeared and night grabbed hold of me, the fits subsided and I came back into time again, and even felt the warm indentation of my body in the train seat.
     
The fit lasted three hours, but its after effects swam into my dreams the following mornings, banging inside my head whenever I walked out into sunlight and making me think I saw people I knew on the street who were not really there. I fell over things, knocked cups of tea flying, banged my knee. And I was so tired, I could have curled up on my couch in my dressing gown and not risen again until spring. When I lay face down on my bed and started dreaming, my mind became brilliant like the reflection of midday sun in a polished floor.
     
My mind is interesting to me. The fit was a terror, ripping through my sense of the world as being something I can stand on. Something that won't break apart when I touch it. But in the last couple of days, it has become a friend, opening a door in my world I never knew was there. This is the afterglow. Until again. And the fear boils up in my veins and takes it all away again.

Thursday, October 01, 2009

The Drugs Don't Work

I’m angry. Hacked-off. Galled. I’m banging my fist on the desk, making pens and paperclips jump with terror. And why? I’ll tell you why. Because, according to a clever man with a stethoscope who sent me off like a milk carton on Tesco’s conveyor belt into a funny looking white machine that bleeps, I have epilepsy. I therefore take tablets for epilepsy. I therefore try to resign myself to a life with epilepsy. And yet, despite this diagnosis, (based solely upon the fact that I get deja-vu with my ‘funny turns’) the fucking tablets aren’t doing their job anymore, and I’m not even convinced I actually have epilepsy. Yes, Richard Ashcroft, the drugs really don’t work, and at present they do just make it bloody worse.
      
So what’s a girl to do? Since upping my dose, my turns have, in fact, increased. Apparently they have to get worse before they get better, so I have been waiting for that shiny day when the ‘better’ bit begins. But in the last week I’ve been back to having them every day, between 3 and 20 times a day, and now, it seems, I’m getting the ‘director’s cut’ versions as well – longer, scarier, consecutive. Last night I had my first ‘mega’ one for about eight months and I remembered how scary and exhausting it can be.
      
Now I feel cheated. After all, despite the many downsides of temporal lobe epilepsy, the upside is surely the far-out mystical experiences, no? I mean it’s one of the most talked about side effects. And I’m exactly the type – arty farty, sensitive with religious-obsessive tendencies, from an unstable background and prone to strange and ‘mystical’ experiences. I’ve a catalogue of them that would look good on any potential crackpot or guru’s CV. So where the hell are they? Where’s my compensation? Where’s my communion with God, my ascent into angelic realms, my vision of humanity as never seen before? Where are the flashes of genius? Come on… Socrates, St Teresa, Dostoyevsky, Laurie Lee, Neil Young, Ian Curtis… they were all at it. Then, despite it all, I’d at least get in some more good writing material. But no. When it happens I just feel like someone’s let off a hundred thousand tiny bombs at the same time inside my brain and then I need to lie down.
     
Patience is a virtue, allegedly, so I’ll just have to wait and see. La, la, bloody la. So if you see my eyes rolling ever so slightly into the back of my head whilst we’re chatting over tea, just ignore it, will you? Or if I call you at midnight telling you I can’t feel the top of my head anymore and my legs have gone funny, please don’t click to answerphone.
      
Grumpiness is another after-effect. So tonight, instead of tying myself to my Imac in the hope of literary inspiration, I’ll be eating my dinner watching back-to-back Peep Show. That’s the only kind of communion I can handle right now - Mark Corrigan in a bad jumper, a wealth of pitiful human suffering, and a piece of battered haddock from the Co-op. Oh, let the angelic chorus begin.

Thursday, June 05, 2008

God Seizures

I'm back from the doctors. I think I can trust him. He's taking my 'funny turns' seriously, which is more than the neurologist did, refusing to dismiss them as panic attacks. He is referring me back to both cardiologist and neurologist. He's not convinced it's heart related though, but that it's neurological-based, which is what I've always felt.

He tentatively said he thought it might be migraine. I'm not that convinced, but after having ten 'turns' in one day yesterday, I'm willing to consider anything. When I read up on various diagnoses, however, it is still simple partial epilepsy that fits my own symptoms most exactly.

Whilst I was looking into it on the Web, I came across this, The God Helmet.

This is so far out, and the implications so unsettling. As someone with a history of both strange or 'religious' experiences and also fit-type experiences (I think I came virtually convulsing out of the womb), there's something in it that doesn't entirely shock me. There's something very 1950's Sci-Fi about it, but the prospect of 'mystical' experiences (and hence a lot of the basis of religion) being neurologically locatable, is intriguing.

It's no surprise that when Richard Dawkins underwent one of these experiences, he felt nothing (I wonder what would make him feel something). As someone who describes spirituality as a 'virus of the mind' and faith as a maligning disease, I mistrust the obvious blind-spots of his scientific materialism.

One thing I do begrudgingly agree with Dawkins on, however, is how faith and 'spirit' can make religion impervious to criticism or rigorous analysis from either outside or within. Religion has such a massive vested interest.

When I think about Roman Catholicism (which contains much beauty in some of its ideals), it has such a huge investment in ideas of humanity, womanhood, manhood, family, birth and death and ultimately 'the soul', that anything challenging this investment is quickly pulled apart and conceived as heretic, aberrant, or 'other'. Or else it turns a blind-eye.

For as long as Catholicism has existed, homosexuality has been on its black-list. To validate it would be to throw all that the Church believes in as 'God's will' up in smoke (or so Church authority would have us believe). It demolishes the Church's position on marriage, conception and the family. Sexual union is meant to be between a man and a woman, married and in a state of grace and love, and for the purposes of conceiving a child. How can that underlying premise of Catholicism stand true if it in any way validates homosexuality?

So Catholicism makes its bitter choices, time and again. I often wonder what happens when someone is actually intersex, having both sets of female/male physical attributes/genitals?


There are two choices - preserve the authority of that religion and cast out those who don't fit in or embrace the differences and feel religious edict unravel.

I don't like the alternative - science-based, materialism-based, consumer-based, psychological-based hard conviction. It's not that different from a religious one.

I've been looking for a God for a very long time. One that's free from its own ideology, that is unmediated 'spirit' or reality, that doesn't need 'belief' in a whole set of proscribed values or rules. I either haven't found it yet, or if I have, I don't know it yet.

It's ridiculous to denounce God. We all have religion, even old Dawkins, whether its science, consumerism, politics, self-help, romance, drug-taking, music, poetry, activism, money, drink, solitude, chaos, death, family, work, self-harm... It's impossible to live in a God-less society.

But that is a God of surety, of belief. What about the more mysterious one, the one the saints talk of, and people like Dawkins despise? The one we can't capture? That defies description, is beyond conception? The one I'm always looking for, that always escapes, or isn't really 'there' to seek in the first place.

I touched it as a 'Buddhist'. I touch it reading both Derrida and St Francis.I touch it with poetry, music, and also sometimes when I look in my Mum's eyes. That's the only faith I know. And it's intermittent, inconclusive, and very scary.

Tuesday, April 10, 2007



Apparently neurologists and psychologists are now making a link between temporal lobe epilepsy and mystical experience. The two often seem to go hand in hand. When having fits, such epileptics often experience what they might call God or Oneness, or indeed, experience themselves as God, or perhaps, as the man on the videos below does, as having "heaven and hell in my eyes".

Somehow, this doesn't surprise me at all. I have long suspected that all kinds of so-called afflictions, physical and psychological (such as migraine, epilepsy, low blood-pressure, brain tumour, mental health issues, personal trauma, neurosis, mental breakdown), can open gateways into bigger, spiritual, experience.

Last week I found out that somebody very close to me has temporal lobe epilepsy. It has been a diagnosis that's been long due, and though in many ways I wish she didn't have to live with this, in others, I'm glad at least we know now what the cause is of her fits.

Without wanting to go into her personal experience, on another level, I've been intrigued by some things she has told me about her unusual experiences during and after a fit, and by the potential implications of that for her, and indeed for myself.

Though I am not epileptic, I do have a strong disposition towards both fit-type experiences and what one might call unusual or mystical experiences. Just after I was born, I started having convulsions which went on for some time, resulting in periodic stays in hospital. Throughout my childhood and teens I had a strong tendency to faint at the slightest thing, where it would almost be like a fit (instead of falling to the ground, I would often still be animated and moving around as though awake, much to the amusement and bafflement of my family). I also had a strong tendency towards both intense psychic, imaginal or 'cosmic' experience, and also, in my teens, a tendency towards extreme mental dissociation, which caused me severe distress at times, as I feared I was 'going mad'. This has continued into my adult life, but has decreased as I've got older and, I think found bigger contexts for it.

Without medical diagnosis, I can't effectively say the cause of this, but my own guess is that it could have been caused by a combination of intense physical and psychic sensitivity and perhaps low blood pressure, which I suffer from. I still seem to often experience extreme physical responses to emotional (and particularly spiritual) input, such as shaking, convulsing, severe coughing, gagging, involuntary laughter etc. I wonder what it is about my physiology, if anything, that perhaps encourages me to experience things this way?

Though I am not denying the physical nature of temporal lobe epilepsy, I do find the link between it and spiritual experience fascinating. It raises many questions. I also find the reverse connection interesting also (and somewhat unnerving), that is, perhaps mystical experiences are just our way of interpreting certain patterns of neurological impulse/connections which are taking place in the brain. It also makes me want to mull over again the connection that I see over and again between that which is often named as 'messed up', 'dysfunctional' or 'destructive' in life, and the arising of genius, deep spiritual insight or experience.

Here is the link, the site itself is worth checking out...

Saturday, November 04, 2006

Constanza and The Nun



Ever since watching a programme about it last Friday, I can't stop thinking about Gianlorenzo Bernini and his sculpture The Ecstasy Of St Theresa. I feel haunted. In the most transient moments - sipping a cup of tea, throwing a bag over my shoulder to go out the door, turning over in my bed in the early morning, slicing potatoes on my plate, I see the image of St Theresa's enraptured face, turned upwards, her mouth open, the fine point of an arrow entering her, a spray of golden light behind, her robe in swathes around her like liquid sunshine.

It is almost a cliche now to talk of the greatest art as being created by the most messed up people. And true, there is much powerful art that is, and has, been created by men and women where neither mental illness nor egomania is the driving force. But equally as true, genius springs from what is incomplete, flawed, sordid, neurotic, stupid, disparate and ugly. From the gutters of despair, in the midst of crashing disillusion, loss, sorrow, hatred and violence (I wonder if life itself is only as beautiful as its own despair, only as pure as its worst filth, only as strong as the weakest, most despised runt of the litter).

I think of this when I look at the Ecstasy Of St Theresa, and when I remember Bernini's torrid life story, and his dramatic depiction of this woman, a holy woman, and, in particular, of her physicality, her face and body as the meeting place or conduit for divine revelation and bliss.

I think a woman's body, in all its variations, is to me one of the most beautiful forms there is on this planet. It is one which has been, and still is the site of devotion, adoration, violation, reverence, contempt and horror in our world. Exalted, degraded, ridiculed, feared, controlled, desired in a million different ways, a woman's body is as complex as life itself, as death, as dying, as growth and decay, as desire, wanting and repugnance.

Sitting here now, under my clothes, I can feel the skin of this body that I breathe through, I can sense the blood circulating my veins, hear my heart beating in my ear if I press it to my shoulder. My breasts, my hips and vagina, my neck, legs, skin, hair, eyes, buttocks, feet, my back are all realities in and of themselves, but they're also the vehicle for a thousand different projections, some dazzling, some shimmering, some comforting, some lit up in the crudest red light or beset by howling laughter.

Some of these have been handed down to me through time, some are of my era, some through art, through philosophy, religion, culture, literature. Some are inside my own head, most surround me from the outside, from the voices of men, from the voices of women talking to men, from the voices of women who do not care what men have to say. From my mother, from my father.

Am I ever my own woman, I ask myself, can I ever escape this hall of mirrors, know my body beyond its own symbols?

I think of it split and ripped by giving birth, a cell multiplying inside it, growing into foetus, forming, enlarging, holding the blueprint for its own destiny, forming hands and feet, a nose, a throat. A life being born - my body as toil, violent music playing through a crackling stereo. A child moving through me, pushed out by labour and agony through the birth canal, ripped from my flesh, out into cold open air. The uncut umbilical cord, the bloody placenta.

Inside and through this female body, life is formed and grown and expelled with massive effort and incredible physical, mental and emotional intensity. And this intensity, this force and power is there, whether realised or not, in every single woman as part of her physical being.

To me, this force inside a woman is beautiful, and messy. It is complex and it is also the simplest force in the world. A force not different from that of the uncovered grave, a corpse peeping out at us from under the soil. Or from a puja on the Ganges, in a blazing light of candles. Or the baby floating past, its head, a bloated shrine. Its skin, grey.

And yes, it is The Ecstasy Of St Theresa, hovering in the air. But it is also Bernini, the artist who carved it, a year before its conception, sunk to the floor, a nobody, a nothing, the memory of the failure of his greatest architectural ambition ringing in his ears.

As it is the epilieptic nun, scissoring in divine rapture across the wooden floor, eyes rolling in the back of her head. She is not pretty. She is not even beautiful. Only a coarse woollen robe, two pairs of old hands holding her spindled tattered frame in the sunlight that pours through the stained convent windows, too bright to bear without her palm across her face.

And this same force is also Bernini's illicit lover, Constanza, in marble, the loop of her cotton blouse pulled slightly undone, her eyes like wildfire in a forest at night, or a tiger esaped from the zoo, once leashed and captive, now, more than untamed: out of control, hunting, hunting down.

And it is Bernini's servant with a sword, slashing at Constanza's face in retribution until it is ribbons, the pillow soaked in her blood, the colour of her most beautiful dress, of her lust. She will never again have a face that can be immortalised in sculpture. The Muse becomes damaged goods, fallen from ecstatic grace, imprisoned for fornication, disfigured.

So it is Constanza who pays the greatest price for passion, and after nearly killing his own brother and scarring her face for life, the real perpetrator goes free: Bernini, the great hero of Rome becomes an even greater hero, the great hypocrite, scoundrel, egomaniacal amour, liar, destroys and violates in the name of love all that he once created and revered as beautiful, as divine. This woman who was his Muse, who became marble, who fired one of the greatest sculptors in history's world with a blaze of signifiers. Who torched it all with her own betrayal. Whom he will never want again. Whom he will never again watch sleeping through the night, holding his breath lightly so as not to wake her. Whom he will never long to press her small head into his chest as though she were his own restless child.

And now her face is a map of stars, all traced in blood, her honour a withered flower, her wildfire burnt out beyond all reason. Where is left for the woman to go? At Bernini's command she is again caged, this time in a damp prison cell without light, in rags and humiliation, taught the lesson that all women who play with fire must learn in 17th century civilisation, the image of her passion, her beauty, her womanhood, consigned to a sunless locked vault.

This same man conceived and gave birth to the remarkable, transcendent Ecstasy Of St Theresa, long after the light had left his eye, long after such tragedy and violence, after his own sudden descent into failure and his turning to God. And this same woman, Constanza, also gave birth to it, and is enfolded within the creases of St Theresa's robes, in the openness of her mouth, her half closed eyes, though almost certainly neither she or Bernini will have ever known, will ever know this.

Woman, Muse, sister, daughter, mother, virgin, slut, truth, beauty, warfare, corruption, fertility, deceit, the earth, the stars, the moon, the fields, the tether, the breaking of all mundane bonds, the higher, the lower, animal, angel, divinity, a flower, a rose, the scent of death...these words and images haunt me, as the Ecstasy Of St Theresa haunts me, as Constanza and the nun haunt me, as a woman who, like every other woman, is all of these things, who is Constanza and St Theresa, Bernini and the ecstasy itself, and, who, in the middle of the night, or when sipping tea, or throwing a bag over her shoulder to go out of the door, slicing potatoes, is none of them, never has been, and never will.




(top image: 'Eve', Rodin's studio, 'Cain' in background.)