The stars were the first to disappear. You didn't notice straight away. In those warm summer nights as a child, when your mum let you stay late and join the adults in the garden after dinner, the darkness would engulf you and you'd bury your gaze in the night sky. Sitting on the wooden chair with hands wrapped around your knees, knees pressed to chest, you'd let your eyes wander and examine the constellations, quickly locating the Lucida in each one, dazed by their brightness.
When did the stars lose their luminance and fade away? In the beginning, you thought the sky was maybe too cloudy. You were little; it wasn't your duty to worry. It happened so gradually, so slowly over the years that no one paid attention. For you, the act of observing the sky became pointless, and your interest subsided into the dusk along with the stars. The only ones that remained visible to you were the brightest; just a few, scattered across the sky.
When you graduated, people began to disappear. Sometimes it was the whole person and other times just parts of their bodies. You would meet someone at a party and by the look on their face you'd realise you had left their extended greeting hand hanging in the air. You'd try to locate their hand to shake it. You’d follow the arm down to the palm but by the time it reappeared again, it was too late. The person looked confused. Perhaps they took you for rude or not interested, and you just stood there, as baffled by the vanishing hand as they were, and a little scared.
Once, your niece disappeared altogether. She was around two. You left her sitting on the floor in the living room, her older brother playing with his Lego in the corner, and went to get the door when the delivery guy rang the bell. When you came back a moment later, she was nowhere to be seen. Max, where's Chloe, you shouted in panic. He gave you a puzzled look and pointed with his head towards the little girl. You tracked the direction of his eyes and there she was, sitting on the same spot where you had left her. This startled you. How come you didn't see her? Your heart was racing, throbbing in your ears.
You feared that one day your own body might disappear. That you would begin to lose a sense of the way you look, and, eventually, will forget your own face.
You promised yourself to book an eye test then. Just to check.
It took another seven months before you did.
The first time you met, your fine-knitted blouse was covered in spicy lentil soup, you were bent down in an effort to collect the pieces of the broken ceramic bowl, and you were sweating profoundly while muttering an excuse for the palaver you had caused. You had just paid for your meal in the Academy canteen, and were trying to locate a free table, when you tripped over someone's bag left on the floor. Your foot got tangled in the bag strip and you executed your near-fall performance, pleasing about fifty pairs of eyes, suddenly all pinned on you.
'For fuck sake,' the owner of the handbag murmured while checking the fabric for any traces of the spilt soup, then continued her conversation.
'The luck of the new starter,' a guy handed you a napkin politely and made a gesture to one of the staff behind the counter to help clean the spilt soup on the floor.
He was hard to miss or ignore. Taller than you, considering your 5.6 ft, curly light brown hair held up in a high bun, bright eyes. A subtle woody scent that felt adventurous and familiar. Handsome. Making your heart skip a beat.
'Is it that obvious,' you replied with a nervous grin while raising your body, flushed with shame.
'Not because why you think,' he rushed a reply, glibly. 'I haven't seen you around and I would have noticed you for sure.'
A charmer. A bit clichéd, but still. He had caught your eye earlier in the corridors; he stunned you with his straight posture and the confidence oozing from the way he walked.
You ordered another bowl of lentil soup with some homemade bread. People stuff their mouths with chocolate, fries, and breakfast cereals when they are nervous, but your comfort food is lentil soup. It evokes a memory of your grandma's whiff after spending the whole morning in the kitchen, her hands smelling of turmeric, marjoram and bay leaf, of summertime and late warm nights filled with crickets' chirp. He got the same and then, while placing the cutlery on his tray, asked if he could join you at your table. His voice was deep and friendly, which felt pleasant. Normally, you'd steer away from forced conversations with colleagues at lunch, but to him you nodded and pointed towards a distant table away from the hubbub.
He sat opposite you.
You talked about the modules you will be teaching: you – Documentaries, he – Lights
about his previous students: mostly a nice bunch, with the occasional privileged protégés with the right connections in the industry and the wrong attitude, only studying Film for the certificate
about the challenges to expect: 'If I told you, they won't be challenges, so I'd rather not take away the pleasure of discovering them for yourself.' He had a point.
You were sparse in your replies to hide your tension. Unlike the abundance of words flowing from him. When he reached for the bread, his hand brushed against yours and sent an electric shock down your spine. He didn't reveal that he'd noticed. But you felt his long glances testing your ability to keep calm.
You explained that it was your first full-time teaching job at a proper film institution, and shared your trepidation about working with adult students, allowing yourself to come across as a little vulnerable; then regretted it straight away.
He listened and nodded, and you realised you'd lost track of time when the canteen grew quiet and empty.
'I need to go. But thanks for your company.'
'Drinks after work?' his offer came unexpectedly.
'On a Monday?'
'Erm, precisely because it's Monday. There must be away to make Mondays less dreadful. Besides meeting someone like you.'
You scanned his comment for mockery but he seemed genuine.
'Just a quick one. I finish at six.'
You didn't get his name, and he didn't ask for yours.
The only certain thing at that moment was the turmeric stain on your top.
He was waiting for you in front of the café on the ground floor, and the two of you headed towards a nearby tapas place on Warren Street.
You only took your gaze off him twice this evening. The second time was when the waitress pointed out about closing early tonight. The first time was when he started gesticulating, and his hands stole your attention. You have this quirk of noticing people's hands, they tell so much about the person. Strong palms, long fingers, beautiful. You followed their move, the way they danced in front of his body in the narrow space between the two of you. He reached for his glass of wine, enfolding it gently, and took a sip, which brought your eyes back to his face.
You were sitting on a high table next to the window, and your eyes slid along the congested street with rivulets of colours and chatter passing by, mixing up and amalgamating, but his poise lured you back in. In the pale light, while he was talking about his freelance art project, an interactive lights installation he's working on for an incoming exhibition, you took in his appearance in fragments. When you examined his face, his body disappeared from your visual field. Illuminated by the lights from passing cars, the smooth contours of his features dazed you.
'I'm going to call it Glass Capsule,' he explained. 'Essentially, it will be a pop-up cabin with glass walls and ceiling. Using light and reflective surfaces, the walls will have the capability to either reflect or absorb light, moving between black-out, mirror-like walls where visitors won't be able to see what's inside, to illuminated and fully transparent glass, allowing them to see inside.'
He is part of a Creative Collective, and the exhibition is planned as a joint project between him and the rest: artists, sound creatives, podcasters.
'Wait,' he laughs. 'That's not all. When a visitor enters the capsule, using kinetic detectors, the lighting goes off and the participant will be able to see the people outside while they won't be able to see them. The participant will then be invited to share a story.’
'What kind of story?'
'Whatever they like. A personal experience. A memory. A dream. The audience outside will be able to listen to their story, using sound showers.'
'And sound showers are…?'
'Figuratively speaking. These are sound panels installed in the ceiling of the exhibition space, which direct the sound to a specific place, as if 'showering' that spot and the person listening, without dispersing or dissolving the sound around. What I'm aiming for is an immersive auditory experience, this synchronised listening creates a collective experience and a sort of shared connection with the storyteller's words.'
He expressed his views eloquently and offered you the space to share yours. Unlike other men who too often had interrupted you, overpowering the conversation and making your speech seem clumsy, bungling. Slowly, you started to build trust and your diffidence began to ebb.
‘So, the absence of visual cues will be directing the visitors' attention to the power of storytelling through words alone. Right?'
'Very inventive,' you didn't try to hide your amusement.
'It is. A friend of mine works for a company that produces these sound showers, so when he mentioned it, I was all in.'
'Why not; tapping on our networks?'
'Exactly. There's more. The listeners actively participate; they're given a task. When the storytelling is complete, the audience is invited to describe the person in the capsule based on their voice, timbre, accent, the story itself and so on.'
'Their perception, you mean?'
'Yes, their perception, because you're right. At that point, they still wouldn't have been able to see inside the capsule. A recording technology will capture these descriptive interpretations, and it will then generate a visual representation or a digital portrait of the speaker. It's an AI-generated image. At that point, the capsule gradually lights up, revealing the storyteller. The roles reverse: now the audience cansee inside, while the person in the capsule cannot look through the mirror walls.'
'The moment of truth. But is the technology able to create an exact matching image of the real person simply by the description of the onlookers?'
He pauses, takes a sip, then continues.
'No. And this is the whole point. What interests me, is people's reactions afterwards. The contrast between their assumptions based on the story or the voice, and the actual appearance of the storyteller will challenge the audience to look inward at their biases and to realise how personal reflections can shape their understanding of others.'
He was ready to order another drink and you didn't want this evening to end, but the bar was closing soon.
'You good for another drink?'
You grabbed your coats and, before stepping outside, he checked his phone for nearby places. You followed him outside. The air was crisp, fresh.
It was that evening when feelings started to erupt.
A sense of longing in those hours when he wasn't around you. At night when aloneness swells and multiplies.
You sensed something wasn't right before the ophthalmologist delivered the news.
In the darkened room, following a series of tests, bright lights directed at your eyes and retinal scans, the air felt dense and sticky. The consultant talked slowly, chewing the words like tobacco and pausing after each sentence, expecting your reaction. You presented yourself as calm, even managed to crack a joke. This seemed to concern him more than you thought. Do you understand what I'm telling you, he kept asking in a hushed but firm voice.
Of course, you did. His speech erupted into your ears and invaded your body, evoking an ocean of questions, but you stayed still, glued to the leather chair, picking the skin around your thumbs with uncut nails. You needed time to absorb the meaning behind the hollow words. To parse the chunks of information and translate them into something that makes sense. Something that won't define you, or your life from that point onwards. All of a sudden, your clumsiness had a name. You were not just absent-minded, inept. There was a label for all this.
He gave you a brochure to read at home, booked you for a genetics blood test the following month and said he'd see you in a year. There is no cure, he said, but there are several researches in progress, opening a glimpse of hope to hold on to.
You walked out of his office and found yourself in the reception. It was full of people, sitting on chairs or standing nervously, waiting for their tests, results, diagnosis. They looked meek, their conversations were hushed. The space was full of uncertainty, of the sound of your unsteady breath, in and out, with the buzzing noise in your ears.
'Are you feeling ok?' you heard a voice behind you. A sensation of your feet melting away crawled over, and you managed to lean over the back of a nearby chair, fainting an instant away.
'Breathe deeply, young lady,' the voice instructed. A glass of water appeared before your hands. A close-up of a worried female face.
You collected yourself. You took the lift down to the ground floor, and, on exiting the hospital, you took the right towards Old Street station. It was pouring but you only noticed after a while –
after you felt the weight of your wet hair falling down your arms
the rain drops on your face
the splashing sound your sandals produce when you stepped into a puddle.
Your eyes were hurting from in the daylight. The beams shaped the silhouettes of people passing by, appearing and disappearing as they hurried in front of you. Their reflections trembled in the puddles. You felt tears forming in your eyes, blurring your vision, but you didn't let them escape. Is this how it's going to be? You couldn't have answered that question.
You got on the Northern Line towards Elephant and Castle where you rented a room of a four-bedroom shabby house back then. You locked the door, shut the curtains and stayed. Just stayed with those words: You've got RP. It's short for Retinitis Pigmentosa. You're losing your sight.
Losing your sight.
The day shrank into the evening and dissolved into black.
You spent the night trying to re-assemble yourself, with eyes wide open, tracing back memories of awkward situations which you'd ignored: tripping over objects, bumping into lamp posts, missing handshakes. Events that signalled your condition like fireflies. Incidents you brushed away convincing yourself it was nothing.
This happened seven years ago. You had just turned twenty-two. Joined this indie film company as an intern. Your best life awaits you, the cheesy birthday message from your mum felt suddenly ridiculous.
You called your mother the next morning and let her deliver the news to the rest of the family.
You didn't tell anyone else. Not yet.
In the months that followed, you refused to accept the diagnosis. You pretended you didn't hear it. Because if you don't think about something, that something doesn't exist. You believed that. There was no need to worry about a condition so slow to develop. By the time you start noticing the changes in your vision, you would be old enough to convince others, and yourself, that this is part of the normal ageing process. Diminishing sight. Cells dying. One day your whole body will die, why bother now, you thought. At twenty-two.
Your beautiful life was ahead of you.
The first time you told a friend:
You're so brave.
Just think about it for a second. You've done so much already, despite everything. Like, you've got friends, you've got your family, people who love you regardless, you know? You can get on the train by yourself and go places. You have a job, girl! That's impassive, considering!
Just never allow yourself to feel down, or suicidal, or whatever. You're so pretty, despite your condition. You don't even look blind. Remember that: even when you won't be able to see your face in the mirror, you still will be beautiful. To all of us, who know you on the inside.
Alright, sometimes you might come across as clumsy when you bump into things on the street, but that's normal. It's even cute. And that's ok by me for sure. You shouldn't feel embarrassed. I mean, I sometimes don't notice the odd box left by some asshole on the floor in the office. I almost fractured my toe once. It hurt, you know? Really hurt. So I know how you're feeling. It's not you; it can happen to normal people, too.
So, don't ever think you're alone in this. Be grateful for what you have. I'm sure it comes with perks and benefits. Like, the disability spaces in the car parks are always free. Plus, you can get meal deliveries every day, so you don't have to cook like most of us. I could kill for an excuse to try new food and have a personal chef, you know.
Look, I need to go now but we should definitely do it again sometimes. I'm always here to listen to you, take you out for a coffee or something. Whatever I can do to help, just let me know. I don't mind some good karma points, ha.
Of course, there was grief. Deep. Penetrating. There was grief, and anger, and anxiety. But mainly frustration with yourself when you couldn’t see. When you ran into bikes left on the pavement that you didn’t notice. When you hit your head in the open cupboard door and it hurt, really hurt.
The only reason you remained visibly calm in the doctor’s room that day, was because you couldn’t fully comprehend the enormity of his words. You were sat there, talked at, sent back home with little explanation. Oblivious to what was about to come. At the time, your sight was fairly good. Just a few blind spots, but who doesn’t have them?
You’re going blind, he said, and you almost laughed at his statement in disbelief. When, you asked, and he briefly mentioned the gradual loss, the gaps in your peripheral vision, the slow adaptation to dark spaces. To very bright spaces. To crowded spaces. Until eventually you will probably lose all of your sight, he said. He might have suggested therapy. He might have pointed you towards support groups. Or charities. He might have, but you can’t be sure. The only thing you were left with was a verdict. A sentence to blindness.
You stayed in the dusk of your bedroom for months: curtains diligently shut, half-full packets of crisp on the floor emptiness like an abyss, that had swallowed you up unable to process unable to accept. You isolated yourself from the world: ignored calls from friends and family, broke up with Ben with a message and then blocked him out, left the intern job without notice. You gave up filmmaking altogether. How many films can you make before losing your sight anyway? The irony. A chasm, like a black hole, was sucking your existence, your willingness to live.
You were fixed on what you were losing. On the limitations. On what blindness was going to take away from you: career, independence, sunsets. The stars. The faces of your future children. Children at all, and also a partner. You gave up dating.
You gave up on yourself.
People are either blind or sighted. That’s what you used to think. How could someone be almost blind? Partially sighted? In-between? How can you see something but miss another, like a car – a massive red car – driving towards you while you were crossing the road on your way back from the shop, listening to a podcast? You didn’t hear the brakes, but the car horn scratched your eardrums. Then the swearing followed. The driver, a long-bearded man in his late forties or early fifties, was furious.
You stopped going out with headphones.
But then, one day –