Words about Illuminating the Self

Punishment –

Silken whites bite

and dilute the dunes

of dust-esque-red.

They come as crocodiles

waiting saint-patient

at the oasis shoreline.

The need to explore

the water is driven

by simple thirst, nothing more.

Starved of barrenness

I fizz at the idea of nothing.

I am excited.

Life is more

than once thought

from what feasts

upon my eyes.

Patterns mask

the flesh-hungry

faces that lay

behind the time

it took to bare.

If I allow my bare

hand to hold

the whole’s fraction

I say goodbye.

My fingers are forfeit.

My hands miss their company.

A lifesaving meal for the artist.

Sitting inside Illuminating the Self, Andrew Carnie’s installation at Hatton Gallery, is like sitting inside of a large brain. The rumbling, gurgling and buzzing sounds that flood the aural field further magnify this impression. I sit still, absorbing the mirage of shifting mindscapes—a forest of neurons made of light. The room is dark and my gaze soft. People’s silhouettes cast shadows on the canvas; their footfall makes the wooden floors creak. My eyelids grow heavy; partly due to the remnants of fatigue that weighs down my nerves, partly due to the tree-like imagery that hypnotically molds into new forms. As I slip into a meditative state, a nearby speaker booms with the thumping rhythm of a giant heart. 

The Illuminating the Self exhibitions were assembled to raise awareness of epilepsy and the groundbreaking treatment currently being developed, which involves the use of UV light and brain implants. But I think that many people can benefit from the messages the artists evoke through their art. People impacted by trauma, those struggling with neurological issues, or caught up in life’s pace and demands. It turns out that majority of world’s population suffers
from stress with 77% experiencing levels that affect their physical health.(1)

In a sense, we do it all the time—sit inside our brains, I mean. It’s our control center, the seat of our consciousness where majority of our nerves reside in coiled concentration. We carry our brains with us everywhere. But most of us, I’d wager, pay little attention to the electric symphony within. Instead, we lose ourselves in the brain’s most prominent creation—the thought. 

Investigating this biological marvel is difficult. It takes time and patience. Until I was forced to do it, I never did.

The day started like any other. The light streaming in through windowpanes made my eyelids flutter. As I felt my identity reform from the cloudiness of a dream, a stabbing pain ignited in the back my skull. I had no reason to wake up with a headache, so I decided to go about my day, drink plenty of water and wait for it to pass. By the evening, the pain grew worse. A week later, the tension spread to my neck and shoulders. A month later, I saw a neurologist.

The doctor ordered MRI scan and told me to go home and rest. When the results came in all clear, he prescribed a mild anti-anxiety medication and a muscle relaxant to help release the steel grip on my head and neck. Holding my trembling hands, he assured me not to worry and that there was nothing wrong with me. It was a diagnosis-less diagnosis that took me fourteen months of living in fear and uninterrupted pain to understand. 

I don’t have epilepsy and wouldn’t know what it means to experience an epileptic seizure. What I do know is what it’s like to have all my nerves vibrate at once for days on end. I know how it feels to trace a searing pain down the thickest nerve of my arm, to see flashes of light explode under my eyelids and have my tongue burn. I was drawn to the exhibit not because I have epilepsy but because I’ve experienced a neurological disorder caused by too much stress. 

Our brains didn’t evolve to handle the amount of information we feed it each day. Just imagine the difference in data intake between the modern man and a caveman! Add to that daily  environmental, relationship and work stresses and no wonder we feel overwhelmed. Each week, for example, we ingest a credit card worth of plastic.(2) In cities, drivers spend more than a day stuck in rush hour traffic every year.(3) True, stress is part of being a human but not to the
degree that we may think. While our brains and bodies do try to adapt, they can’t do it as fast as we’d want them to.

Feeling myself sink deeper into the light-induced hypnosis I break the trance and walk towards a tall cylindrical object in the corner of the exhibition. There, shielded by a black sheer veil, tree branches float in blue light. The blue light, which is abundantly featured in the exhibition refers to the optogenetic treatment being developed for epilepsy, which uses blue light to stimulate nerve channels in the brain to calm the oncoming storm. I’m attracted to this piece because of the ideas it invokes. The branches’ resemblance to neurons is undeniable. But there is more, hidden in the subtext, hinting at our origin and likely source of restoration. 

Andrew Carnie was raised by a botanist and a geographer. He spent most of his childhood outdoors. In his presentation at the gallery, he said that he was lucky that he didn’t have access to Facebook when he was young and empathized with those of us who opt for more screen than nature-time. Today, an average teenager spends 6.5 hours in front of a screen each day.(4) Online gaming is exploding and education is becoming more virtualized. Most people feel a
strong sense of anxiety if they leave their mobile phone at home when they go out.(5) 

Substantial consumption of media is also responsible for attention disorders.(6) I know for myself that on the days when my mornings are consumed with answering text messages and emails, making Skype calls and posting on social media, my attention is more fragmented than on the days when I’m mostly offline. Cal Newport, the author of Deep Work writes that “if you keep interrupting your evening to check and respond to e-mail, or put aside a few hours after dinner to catch up on an approaching deadline, you’re robbing your directed attention centers of the uninterrupted rest they need for restoration.”(7)

But while technology can easily take over our lives, it also presents a myriad of advantages. Technological advances have prolonged and upgraded the quality of human lives. As we face a great new frontier—merging biology with technology—new questions arise about the impact of technological interventions within the brain. Practical questions. Ethical questions. Emotional questions. These questions are an intricate part of the themes Mr. Carnie touches on in his exhibition.

Is it possible to reawaken regions of the brain that had become inactive due to illness or ageing? If it is, how would having a brain implant change me? What would it take for me to seek such level of intervention?

Introducing foreign substances into the body can alter our perception and I’d imagine objects could have even more impact. For example, some anti-depressant drugs can interfere with concentration and motivation. Looking for a cure can be like walking a tightrope. This is especially important to creative people who may notice that while they may succeed in calming down their frenetic brain, their creativity may become more dormant. This presents a conundrum for those who seek relief but don’t want to lose access to their imagination. 

In my frantic search for a solution, I’ve tried a number of medications to stop my brain from producing pain. Conventional medicine currently uses anti-depressants to achieve this effect.(8) Unfortunately, it rarely works. When I tried this form of therapy I felt little reduction in pain and instead found myself lost in a fog. I decided to interrupt the treatment shortly after it begun. Struggling with concentration while doubting the meaning of my life was not worth it
for me. I decided to search elsewhere and most importantly to unearth the cause of my symptoms.

Neurological disorders and mental illnesses are on the rise. As our lives speed up and lifestyles become more artificial and demanding, our bodies struggle to keep up. Many of us carry emotional scars and past wounds that can’t properly heal because we are running full speed ahead and ignoring the body’s clarion calls. As I walk to another installation where green lasers crisscross one another forming an inorganic structure, I think of how easy it is to disconnect
from the body. Many of us do it even though it is always here, like our brain, speaking to us, transmitting messages. 

It took me fourteen months to decode the messages my brain was sending to me through pain. The pain was real and debilitating at times but its source was the mind, not the body. This is why the tests I’ve done have failed to identify the cause. Years of neglecting myself and succumbing to a flurry of demands entrained my brain to believing that I was in constant danger. Having a do-gooder, perfectionist personality didn’t help. It was more important to me to do things well and always be on time than to rest and restore when my body needed it. It was more important to keep my feelings locked inside than to admit to myself that I was angry or afraid. The pain was meant to serve as a safety Mechanism—to keep me at home and away from risky endeavors. It kept me distracted from the real issues brewing under my skin. 

According to Dr. Sarno, once triggered by stress, the autonomic nervous system will restrict blood flow to tissues, nerves and joints, depriving them of oxygen. The brain causes pain and fatigue symptoms to prevent us from looking at reservoirs of inner terror and rage because it thinks that feeling such powerful emotions will be lethal.(9)

I know it’s true because what brought me relief was allowing myself to feel my emotions and write about them without censorship. Within days, after filling many tear-stained pages with writing, much of my tension dissolved. This made me keenly aware of how much emotional pain I have suppressed. In the end, my recovery came through awareness (the pain is not harmful), a change in mindset (paying less attention to the symptoms and more to what I was feeling) and deep relaxation. I was able to sustain my progress through a steady return to a slower and more natural daily rhythm and not trying to do everything perfectly and at once. Daily walks also helped. The branches of my nerves found respite in nature. 

But first, I had to become my own observer, probe my body’s matter to find the thinker. I had to watch closely how my thoughts affected how I felt. I needed to find the connection between worry and stress and pain flare ups. The watchtowers that show up in the forest of neurons on the exhibit canvas remind me of the importance of paying attention to these things. The images draw me back into myself to a place where my control center resides and where I
get to decide what I let in and what I let go.

Notes/references

(1) Megan Hull, Stress Facts and Statistics (Recovery Village, 27 January 2020)

(2) Plastic ingestion by people could be equating to a credit card a week (The University of Newcastle Australia, June 12, 2019) 

(3) UK rush hour drivers spend more than a day in traffic (BBC News, February 6, 2018)

(4) Fottrell Quentin, People spend most of their waking hours staring at screens (MarketWatch, August 4, 2018)

(5) Nanji Ayaz, Would Consumers Rather Lose Their Phones or Their Wallets? (MarketingProfs, January 19, 2018)

(6) McRae Mike, There's a Worrying Link Between Rising ADHD Symptoms And Too Much Internet, Study Shows

(7) Newport Cal, Deep Work: Rules for Focused Success in a Distracted World, (New York: Hachette, 2016)

(8) Riediger Carina, Schuster Tibor, Barlinn Kristian, Maier Sarah, Weitz Jürgen, Siepmann Timo, Side effects of antidepressants used for chronic pain relief (Science Daily, September 5, 2017)

(9) Sarno John E, M.D., The Mindbody Prescription, (New York: Hachette, 1998)

After Emily Dickinson

Does my brain look the same

as Emily, Sylvia or Anne’s? 

If we cleaved them in two

would they match, seam by seam,

in their suffocating liquor?

A Personal Reflection on Illuminating the Self, a two part exhibition at the Hatton Gallery by artists Andrew Carnie and Susan Ainsworth on the theme of Epilepsy

I researched the question, ‘what does a writer in residence do,’ and found suggestions that it could give ‘time to pause and reflect on writing practice’ and also was ‘an opportunity to respond to objects/art.’ (1) When I went into Andrew Carnie’s Blue Matter (2) film and installation I found the opportunity to do both.

Entering the dark space alone was intimidating. Who or what was hiding in the shadows? Was I stepping inside someone’s skull? Carnie takes us into the engine room, the chief executive’s office of the human brain, where decisions are made and all bodily functions are planned and executed. Before retirement I was a Speech and Language Therapist and when I trained in Newcastle we were taught the anatomy of the head and neck and aspects of neurology. We studied and handled a human brain, thankfully devoid of any consciousness. This installation transported me back to those classes, which, despite the smell of formaldehyde, allowed me to view the walnut wrinkles of the lobes, the denseness of the white matter and to become aware of its relatively small size and the amazing functions it performs.

As the installation pulsated into electronic life I considered how fragile our brain is and how tenuous our grip on consciousness. How easy it is to interrupt our thoughts, our motor planning, our very sense of self by mis-wiring and mis-firing or by damage caused by a knock, a bleed, a clot or some space -occupying lesion. I have no personal or familial experience of epilepsy but I have stood alongside loved ones as their self and personality evaporated into dementia and heard them describe the ghosts and delusions that confuse them. I have worked with autistic children whose

sensory overload becomes so unbearable they cower in dark corners to escape or retreat into the security of routines and rituals. Neurological deficits and disorders have historically had an aura of the supernatural attached to them; Words such as ‘possession’, ‘changeling,’ ‘driving out devils’, ‘seeing visions,’ and ‘speaking in tongues’ have been used to describe them. A malfunctioning brain is a fearsome thing for its owner.

The artist helps us travel deep within the architecture of the brain, imagined as a forest of interlocking dendrites and synapses, moving and swaying then brutally curtailed by random electrical discharge. Within this scaffolding of connections we see phantasms, light storms, visions and our deepest fears. Herds of mystic deer and lurking wolves wander in the darkest recesses of all our sentience. Lions and hobgoblins follow the pathways and bridges and we can feel and see the absence and confusion when connections are lost. A whole human form gradually emerges, limb by limb only to fade again. With an alarming prescience, something that looks uncannily like a Corona virus drifts across the screen. Finally, signs of hope emerge from the confusion as exploding light intervenes against the darkness and tries to detain the seizure at its source.

The two parts of the exhibition reflect the twin aspects of epilepsy, one physical, one experiential, both dealing, as they do, with a sudden and uncontrolled loss of consciousness. Passing from darkness into the light of Susan Aldworth’s installation Out of the Blue (3) takes us from the mechanics of brain activity into the personal and emotional side of living life with epilepsy and the effects that this brain malfunction can have.

My first impression is of the enormous scale of the work, which fills an entire exhibition hall. The artist has taken the words of those experiencing epilepsy and these have been embroidered onto Victorian underclothing. We see an array of

nightdresses, chemises, bloomers, stays and petticoats, predominantly female, but an occasional nightshirt is in there too. They are ghostly, like souls ascending, then coming back to earth as consciousness returns. The artist tells us she has chosen underwear as it represents something unseen in everyday life, which epilepsy so often is, a hidden, unpredictable condition. The lights and flashes of seizures are represented by the florescent colours used in the embroidery and in the changing levels of light. The embroidered words seem to me like the found poetry of a soul in anguish.

Overwhelmed | Robbed | Torment | Battle | Fall | Ambushed | Challenge | Empty | F**k it | Absence | Why Me?  | Uncertainty | Isolated Dizziness | Aftermath

On one of my visits I was lucky enough to see this work as it was intended. One hundred and six articles of white clothing rising and falling mechanically on pulleys, in imitation of brain waves disturbed by seizures. Their rhythm had a mesmeric quality. At other times there was a technical fault (perhaps analogous to misfiring of the brain) and the clothes drifted and shivered in a draught as a door opened or a visitor moved around.

I was able to return on three occasions to this exhibition, each time finding new descriptions and solitary words amongst the garments and embroidery, as the changing fluorescent lighting gave them prominence.

In this exhibition I saw science, art and humanity blended. Carnie’s Blue Matter shows us the intrinsic beauty of cerebral structures in all their profound complexity. As a speech and language therapist I was always aware of the devastating consequences when a person loses or suppresses their means of communication. Epilepsy is not often spoken of in public but in her installation Susan Aldworth found a way of giving a public voice to those who live with this condition. I was both humbled and awe-struck by the project, as the artist herself had hoped I would be (4).

References

(1) Melita Armitage. Writers in Residence, A Practical Guide. London. The Arts Council.2003 

(2) Andrew Carnie. Blue Matter. Film and Installation. Hatton Gallery. Newcastle University 2020

(3) Susan Aldworth. Out of the Blue. Installation. Hatton Gallery Newcastle University 2020

(4) Susan Aldworth. Out of the Blue. Video introduction. Hatton Gallery Newcastle University 2020