Voices

Essentially Normal Studies: An artist’s attempt to express the invisible and unseen

In the middle is a blue body facing backwards. Nearby on its left, are two smaller anatomical orange bodies wrapped around running black and white lines. Layered elements of medical scans, imagery and type converging and falling into each other, fill the background. Red and white spots fall across the page.

Countless living through multiple poorly understood hidden illnesses and disabilities; chronic Lyme disease, CFS, endometriosis, lupus, Ehlers-Danlos syndrome, fibromyalgia, the list continues. Complex chronic conditions sharing concealed symptoms of debilitating pain, inflammation, fatigue, weakness. Physically disabling, yet invisible for us to see.

Failure. Invisibility.

I found my pen circling these two words in my journal, over and over again after a conversation in class that left me thinking. Both share an interesting, complex and intertwined relationship.

Failure, synonymously opposed to success. Success — visible, definitive, conclusive, realising its recorded social mark and visibility. Failure — invisible, ambiguous, anonymous, occupying a silent shadow narrative that lies unseen and unheard.

Invisibility — failing in its lack of definitiveness; obscurely, ambiguously settling its way into the background.

Invisibility — failing in its absence of language, in missed articulation.

When grappling with the blanks and absences of markers and words, where do we begin to communicate, define or encapsulate the imperceptible?

What happens when language fails us?

 

A closeup image of an artwork. Red, brown and purple colours and white handwritten words form a backlit layer against the outline of a scanned spine.

‘A condition that is not perceptible, not noticeable, not evident to others. In short — a condition unseen to others.’
Margaret H. Vickers, Life at work with ‘invisible’ chronic illness: The ‘unseen’, unspoken, unrecognised dilemma of disclosure

‘What is bothering you, Devika? You seem to be stressed,’ he asked me with feigned, patronised sympathy. I didn’t know how I was supposed to answer his question.

‘No no, you see, the pain is only a symptom of something else. Tell me, what is it that’s really bothering you?’

Clenching my fists in frustration, I didn’t have a reply that could satisfy him. It didn’t seem like anything that I had to say mattered at that point as after a few minutes with us, he had clearly arrived at his conclusion.

Turning to my parents with his curled, infuriatingly condescending smile, he offered, ‘Here, let me write her a referral. I think it might help all of you.’

I sat back in that chair holding back anger and tears. We had just come to the clinic of one of the city’s most reputed orthopaedics.

 

 

A clean sterile dark sheet of film exposed against light. The hollowness of something absent, an escaped imperceptible layer ghosted against the sheet. Churned, typed words glide and float across the screen. ‘Normal, normal normal.’ Definitive, declarative, decisive. Unblemished by complication.

‘Psychosomatic disorder(?) Please see psychiatri–’

I quickly slipped the paper away. Uneasily, I looked back at the flood of scans, reports and notes laid out across the desk —

2009. MRI Cervical Spine. Weeks of shooting pain in neck, right shoulder and arm.
2010. MRI Thoracic Spine. Pain and spasms steadily spreading into upper and middle back.
2013. MRI Right Knee. Locked, buckling and swollen knee. MRI Cervicothoracic Spine. Spasms and burning radiating all over the neck, back, shoulders and arms.
2013. Whole Body Bone Study. Pain, swelling and instability spread into both knees.
2014. X-ray + MRI of Lumbar Spine and Sacroiliac joint. Radiating pain, spasms and tightening, moving down lower back and hips.
2015. Bone Mass Density scan. Weakness, pain, inflammation and spasms across both upper/lower body. Redness, swelling in heels.

2015. Diagnosed with fibromyalgia/osteopenia/myofascial pain syndrome.

||

2016, 2017, 2018. I find myself back inside the machined noises of the MRI room.

A triptych of medical scans. Reds, blues, yellows and purples with white handwritten words and webbed white lines form a backlit layer.

Illuminated Sections STUDY 6.3 MRI, Light Installation.

 

Hues of red amidst fragmented words peep through shadowed film, forming hidden imagery, muffled movement, concealed behind the screen. Netted lines drawing spirals around orange forms, enveloping and masking them from being seen. Layered, turned bodies fold over and above each other, submerged, silenced inside a larger landscape. Sinuous, shrouded, guised. Unseen.

It is 2 am, and I’m nose deep in pages of notes and research; in layered voices, stories, and essays of many collectively struggling behind their masks. Countless living through multiple, poorly understood hidden illnesses and disabilities — chronic Lyme disease, CFS, endometriosis, lupus, Ehlers-Danlos syndrome, fibromyalgia — the list continues. Complex chronic conditions that share concealed symptoms of debilitating pain, inflammation, fatigue, weakness. Physically disabling, yet invisible for us to see.

In recording and reading their experiences and stories, I found myself easily and quietly detaching from myself, into this much larger, vast, shared collective of invisibility. Different people across the world, all with the same story. Years of medical misdiagnosis, doubt, dismissal, all holding up behind their controlled Masks Of Normality.

A collage of coloured, interweaved elements of medical scans, imagery and type converging and layered over and against each other. Blue and orange bodies float across the page, red spots and white penned lines run and weave through the imagery.

Absent Bodies STUDY 4.3, 4.4 Water Colour & Pen Collage.

‘The accounts of modern diseases …people are encouraged to believe that they get sick because they (unconsciously) want to, and that they can cure themselves by the mobilisation of will…Psychological theories of illness are a powerful means of placing the blame on the ill.’
Susan Sontag, Illness as metaphor

 

Blurred, unfocused purples merge murkily amidst clinical shadows of dark blue. Hazy scrawled lines running, intertwined, filtering, disappearing into washed colour. Indistinct, half-eaten words fragmenting, fading behind their filmed surfaces. Indefinite, uncertain, clouded, ambiguous.

It is 2.30 am. Reading through a medical anthropology paper, I come across a patient living with early onset multiple sclerosis narrating his experience of confrontation, faced each time he needed to access disability parking. His solution? To limp a little more excessively, a little more obviously, in an effort to be believed. My mind jumps to last year, when I met a girl with fibromyalgia, who carried a foldable hidden crutch in her bag everywhere she went. Despite doing nothing for her symptoms, she explained, it simply allowed her access to disability seating in the subway, on days she couldn’t stand from the pain.

Instantly, I remembered days when with shaky knees I’d quietly slip on a kneecap to access the college lift without unnecessary confrontation or the need for explanations to the college administration.

It is interesting how we silently cloak ourselves into our neatly classified social boxes of what disability ought to look like, of what what we call ‘normal’ must appear as. In a culture where we continuously impose meaning and legitimacy on the visible and conclusive — does the blurred ambiguity of invisibility fail to find its slot? Conversely, where lies a place to find a language for the ambivalent, the indistinct and the in-between?

A triptych of two layers. The first, medical scans visualising blurred sections of the body. Pinks, reds, blues, yellows and purples with white handwritten words and spiralled lines form the backlit layer.

Illuminated Sections STUDY 6.1 Spine, Light Installation.

A triptych of two layers. The first, medical scans visualising blurred sections of the body. Pinks, reds, blues, yellows and purples with white handwritten words and spiralled lines form the backlit layer.

Illuminated Sections STUDY 6.2 Knee, Light Installation.

 

‘“You don’t look ill,” people often say to me. “You look just fine.” I have wished so many times that I could wear my brain in a sling. Or better yet have a see through crown so that the lesions and the broken synapses may be seen…and I need not struggle to find the language to express what it means to…be unwell.’

-Lata Mani, Interleaves: Ruminations on illness and spiritual life
A triptych of journaled artworks. Against a deep purple background are three drawn forms made of white webbing lines and light purple-pink brushstrokes. Inside each form are torn black and white collaged elements. White handwritten clinical text forms the top left corner. On the bottom corner are scratched out words.

STUDY 1.2 Burgundy Bodies, Pen & Ink Collage.

To display or not to display; to tell or not to tell; to let on or not to let on; to lie or not to lie; and in each case, to whom, how, when, and where.
E . Goffman, Stigma: Notes on the management of spoiled identity

 

Rewritten words, scratched, slashed over and over again, broken against diverging, tensioned lines. Numerals of cold clinical type conflicted against leaked, pulsated washes of colour. Fragmented printed, scanned anatomical elements juxtaposed behind scrawled, intertwined shapes. Dissonant, discordant, disassociated.

Dissonance. What happens when the visceral and visible lie in opposition to each other?

Looking at my scans spread out in front of me, I suddenly felt uncomfortable and overwhelmed. As an artist I had always felt weirdly conflicted when expressing any sense of pain or the personal. Art had always been the realm of colour, of escape — yet over the years, pain was suffused with shame, embarrassment, self-judgment and a growing disassociation with myself and my body. How could I begin to express this collective resonance of invisibility when, daily, I found ways to escape, ignore and reject my own body?

Confiding in my thesis mentor, I asked if there was some way I could express my research and explorations without bringing my own narrative into question.

She posed a question back to me: ‘Devika, do what feels comfortable, but think about this. When talking about invisibility, are you sure you want to make yourself invisible in the process?’

 

Two serigraphs side by side of scanned black and white spinal forms centred against a blue black background. White netted lines overlay, wrap and extend outside the forms. Handwritten clinical text frame the images on the top left corner. On the bottom corner are words scratched out indistinctly.

STUDY 3.1–3.2 Cervical, Thoracic Spine, Serigraph.

 

In October, ‘Essentially Normal Studies’ previewed to the public through an exhibition of journaled paintings and drawings, serigraphs and moving image videos, reworked and overlaid abstractions of my medical scans of the last eight years.

It has been a few weeks since the exhibition. Many exhausting, conflicting feelings of confusion, release, judgement, and detachment have followed me through the last ten months of this project.

However, what left me overwhelmed has been the written notes, the mails and messages that have come my way, from others finding shared resonance and connection with what the work in their own unique, individual ways. Every day, all of us pass and walk by each other, perceiving only what we see on the surface, never imagining that the stories and baggage that we each travel with and carry are, in many ways, layered, weaved, shared, and interconnected.

A week ago, I received an email from a stranger who visited the exhibition to see the work. I remember reading his last few thoughts over and over again. I didn’t know how to encapsulate what I felt reading his words, except, that through these, I found my own. He said:

 

‘Like a snap in the dark…fuzzed over by time and unclear memories and a belief, in beauty, a belief that there should be beauty, and that it is not hard to add to things even when they hurt.

To be of beauty. To be of its language. To use that language to express complicated things that hurt or are complicated or that mean so much more than is easily expressed with a first glance at what’s visible.
Art, colour, the heart bloom of flavour, mixed materials gathered and placed just so to express things that words and stories and facts can’t do alone.
It’s a language, and it’s beautiful.’

 

It’s a language.

Devika Sundar is a Contemporary Artist based in Bangalore. Her series, ‘Essentially Normal Studies’ developed from her six -month graduation thesis project, later expanded into a solo show exhibited at Gallery Sumukha and presented at MYOPAIN India 2018.

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Point of View Team