The Hungarian expression Farkasvakság means Wolf Blindness. It is used for people that cannot see in the “wolf hours”, from dusk to dawn, and the twilight zone. This is the light spectrum where I loose eyesight.
The wolves, daily journeying through the dome of darkness, represent intuition, the unknown, fears, physical power, resilience, liability and more.
They are part of the symbolic cycles of death and rebirth. Wanderers between worlds of light and shadow.
WHAT CAN´T BE SEEN.
How our biographies take physical shape to talk about connection?
Dealing with Retinitis Pigmentosa a degenerative disease that can cause blindness, Márcio tracks the unfolding of relational interfaces that see beyond the unknown within the darkness.
The research looks for actions that form and fade the human awareness of connection by exploring alternative stories of visual experience.
A FEW FOOTPRINTS
When I was around 13 years old, I volunteer to work with blind kids. Their school was close to the house where I lived in Santo Ângelo, south Brazil.
I remember to have my breath held for most of the time I was in the classroom. Though tense, I was fascinated to see the kids learn Braille. I couldn’t notice the difference between the letters whenever I touched the paper, I had to look at it to identify the characters. Was not the sensation of the characters that spoke to me but the visual form the sequence of dots took.
During the reassess a child asked me, “ what is the colour of the sky? “
“Blue”, I answered.
“How is Blue?”, the kid asked.
I was immediately confronted and confused. Colour, was not just something I could see, but a cluster of sensations I could have. My early teenage brain twisted itself to explain how the colour blue was. I tried to find other nouns and moods that were blue, it occur to me for the first time that colour wasn’t only a light frequency, but an embodied shared symbol.
“Hmm…There is no clouds on the sky today, the sun shines soft and makes this blue I see very comforting, calming, southing, refreshing. The water in some places is this tone of blue, some butterflies have this colour too. When I look at it I feel that the time could stand still.” I said.
After a long silence the child says: “Blue is beautiful.”
The easiness of the sky, I had always taken for granted, crashed down while I agreed with the kid: “Yes, blue is beautiful…”
That day I became aware of the worlds plasticity. I arrived home and told my mom I unfortunately wouldn’t be able to go back to work at the school. I was overwhelmed by my experience. Nevertheless, since then blue became my favourite colour, a reminder of our perceptual fragility, plasticity and ephemerality.
My great grandfather was called Eduardo. He was a farmer, son of Italian migrants, living in a small city on a valley not far from Porto Alegre. I’ve been told he loved to read. He owned a small wooden bookshelf, about a meter high by seventy centimetres long. The bookshelf, used to stand by his bed.
As books were hardly affordable and even harder to find back in the 1950’s Brazilian country side, whenever Eduardo finished a book but couldn’t get a new one, he read the dictionary to learn new words.
One day his eyes got tired, and tinted by cataracts.
Even with an eye surgery he cold never read again. With the vision loss, he also lost the chance to interact with his love for literature.
Probably because of the advanced age, over 90 years old, he became blind. Still, not long after his loss of eyesight he died. Some people in the family say that was the heart break over the books that took his life away, not the age.
Together with my father, my brother recovered Eduardo’s bookshelf, now it stands in my brother’s leaving room, as an altar in memory of our great grandfather and his love for letters. The shelf is filled only with dictionaries.
How our biographies take physical shape to talk about connection?
When I asked this question at first,
I was imagining the actual traces of our experiences that form the shape of our bodies, which by consequence inform the layers and edges of our perception and cognition. The ways we understand, find and feel connection with everything and everyone surrounding us. A bidirectional circularity - where form follows function that follow meaning, the follows form, and so on.
While I was conceptualising the idea, I realise that my embodiment of it was lacking the awareness of my own history. We all inherit gens that come not only with biological information and potential but also with stories.
Vision was also at the background in framing this question. I have a genetic degenerative diseases called retinitis pigmentosa.
It causes progressive loss of peripheral vision and consequentially blindness. The rate of its progression is unstable. It is a rather rare disease.
For the past 11 years I have been working mostly helping others to convey their vision through dancing.
As this subject of vision, is very close to me, it took me few years to stop denying my loss of sight and address it properly. Not only as a problem, that creates social anxiety or trouble, but as an invitation to discover and reclaim my motor and emotional abilities, through integrating what vision can be and mean to me.
During a bus ride in Berlin at evening, I was feeling anxious, so I grab my phone and start exchange messages with a friend. The giggles of four German teenagers, sitting just behind me, kept on calling my attention, but after all they were just teenagers doing teenager things, so I try not to bother.
My phones display setting is adapted to my vision, meaning that I have bigger size bold letters as a default.
Even with my focus mostly on the messages, I start to recognise some of the german words the teenagers were using meanwhile giggling, at some point one of them said loud in English: “I feel really tired. I wish you were around, my eyes are worrying…”. Reading out loud what I was writing.
They were finding fun, to be able to read from where they were my anxious conversation, while I have to hold my phone about 40 cm away from my face to see what I type.
I got furious, by being mocked for the big letters on my phone. I look back at them and left the bus immediately.
I got angry at myself for not being able to say a word at them.
I got angry at myself to have the feeling that most of the time, because of my eyes, I don’t want help, but I need help.
I got angry for daily having to trust myself to what I don’t see, to others, not always out of choice. For feeling tightly framed by my tubular vision, for being attached to things I want to do but I can’t, or I believe I can't.
I though about a friend that is visually impaired telling me about the shame he feels by having his computer adapt to his vision. Telling me he wouldn’t change the display of his phone, because he would feel he was giving in to his eyes disease, and because he was afraid other people could see what is in his screen from far.
There, angry at night, waiting for the next bus, it occur to me that vulnerability is not created alone. It feeds from a context. From an environment that is also social. From ways of relating, from an absence of integration. From a disorientation in the senses.
I gotta be fast. I take with me a fish net shopping bag with clothes. I’m very close to where I want to go, I see the traffic light turning green, I speed, placing the hand that holds the bag next to my shoulder, to the bike handle. I’m biking on a lane between cars. The bag slips down my arm, falling straight in the gear between the peddles. I fly, projected front. Noise. The smell of the asphalt. the right cheek, the right shoulder, the right hand. I stand with the speed I crashed. I lift the bike up in the air and take it out of the road.
There is pure chemistry rushing my heart, speeding my breath and thoughts, suppressing any pain, sharpening my eyes and grounding me down, my body trying to don’t loose, or regain orientation. My jacket is ripped, I have feathers everywhere.
At the pavement I check the bike first, phone second, I think about the job I have at the museum in the next morning, then an unknown hand reaches me my glasses, cap and the broken bag, now filled with dirty clothes. Three people with shocked faces, ask: “Are you ok?”, I see few cars parked with people looking at me apprehensively out their windows.
I understand I have to check my body. I move. I have no pain, there is a bit of blood on my face, some dirt on my clothes and feathers all around me. I sense a raw energy, my body wants to run. “ I’m fine, is all good! I will push the bike. I was going just down the block." I say while moving away.
20 min before crash.
I talk to a friend about a long trip I must take for work. It will happen in two days time. I don’t want to go. I tell him that there is a blurred line between affection, work and need that makes saying no to a job very difficult. I was complaining about speed, time and feeling rushed.
I was already hurt at the inside, the crash only brought the bruises and wounds to my skin.
7 min after crash.
I bring the bike upstairs, two floors. My friend opens the door, looks at me and place his left hand in front of his moth while his eyes widened.
“I crashed. But the bike is fine.”, another friend give me some tincture drops and send me to wash my face. A third friend asked me what had happened.
“You could had died...
Did you faint?
Do you feel dizzy?”
One of them ask with wet eyes over dinner.
“Take this ice patch.”
“Do you still wanna go to watch the show?”
“Yes, I will bring the ice patch with me to the theatre.”
At the theatre I see familiar people, everyone is asking me about my face, if it happened because I couldn’t see. I kept repeating the story, stressing it wasn’t because of my eyesight.
At the end of the performance cortisol and adrenaline were still at work in my blood stream. I have to leave. I can’t imagine any longer the alternative ends for the accident I have been hearing. Even, the understandable worries of friends, disturbs me at this point.
“No, wasn’t because of my eyesight.”
I leave the theatre by my own, I want to spend the night alone. I make my way to the atelier. Feeling rough, alert, weirdly wired. I was more present, tracking my body, my surrounding, feeling my own pulse, listening to the furthest sounds.
“This is how animals might feel in the night” I whisper to myself. “Wild, wild, wild but not chaotic…”
I bike to the museum, I have to tell many times the story, hear many words of worry and concern. Hear fears that are common to all of us, finding a platform, an event, a story in which they can be expressed.
“You should take care”, “ why do you have a race bike?”, “ you could be seriously injured”, “be careful to ride in the evening”, “you are doing too much, so you are tired and distracted “, “how could you bike here this morning? Aren’t you afraid?”…
Through the next days I heard more of the same. Because nothing serious happen, I almost felt it was wrong. There were so many “it could be worse, you could had…”, “you should…. “, “you need to…”. Few people asked what I felt about it.
How was I feeling?
I was feeling great, my body saved me . I realised that this body loves this earth-made-place, it does everything it can to be around, to feel things, to have joy, to have pleasure, to keep sensing. It compensates at its best, to maintain its terrestrial continuation. it adapts as a shapeshifter, it learns, remembers, it answers urgencies, desires and needs. It talks to me and likes to communicate.
No visual cue from the crash itself stayed, my vision was fully suppress in that split second. I have no idea how the fall was, or how I stand up so fast. Like it often happens in deep states of listening, concentration or ecstasy, the eyes couldn't keep on with the event, but instead of just one sense, the whole body was there to look after itself.
There is a retired policemen in the family that has been researching for many years our genealogy. He had come to Germany from Brazil couple of times, to look for documents and information about the migratory history of our ancestors.
He tells me that between 1828 and 1829 the first members of the family migrate to Brazil, running from Napoleon and the eruption of a volcano in Indonesia that apparently, because of the cloud of ashes, compromised the crops bringing famine to Europe.
A couple with seven children arrived to the area of Bom Retiro, south Brazil. I’m the 7th generation since the migration. I asked if there is any record of visual impairment or blindness in the family, he said he never came across anything like that, at least not before the generation of my grandfather, but “suicide” he says “suicide is the plague of our family”.
“ok... thank you, I will keep that in mind” I answered.
My grandfather had 12 other siblings, besides him, just other two people inherit Retinitis Pigmentosa, Adolin and Elvira.
Elvira went blind at her 30s, she had two kids, one inherit Retinitis Pigmentosa, this kid went blind at their teens.
Adolin had four children. One of then inherit the disease. When this child was around 13, he had a bike accident with a car. Because of the low vision, the teenager did not seen the car, crashed and pass away. Later Adolin adopted a kid that had born in the same day as his teenager child that had past away.
My grandfather, have 4 offsprings. One, my mom, inherit Retinitis Pigmentosa. My mom had two kids, and one, inherit the disease - this is me.
I couldn’t find any record from my great grandmother, but I believe either something was too scary to be seen, or to overwhelming for a view on a full picture.
For some reason this genetic pattern was switched on, and this compensation went down the family tree.
I’m carrying a survival mechanism, that feels like an error, produced for at least 3 generations. I try asking my eyes what they don’t want to see, or why they rather see more darkness around…
I’m not sure if even themselves know the answer.
We were informed the light had been adjusted for the second show. The set designer that had not seen the piece for a while, found it too bright and less mysterious than what he remembers.
I get my cue to enter. I climb, with the help of a rope, the big inflatable prop that stays at the back of the stage. The inflatable is cover by a sheet of vinyl.
It is very unstable. I have to go up the highest slope of the prop, and stand there about 3 to 4 m up the floor, until I get my next cue.
It is normal that I don’t see much in the first part of this piece. But, this evening, I couldn’t see a thing. The smoke was dense and the light very fainted. Balancing on top of the inflatable, without having visual reference felt even more challenging.
I made it through my pathway. Sometimes slowing down I finally arrive to the other edge of the stage. Now I stand with my back once more to the audience, waiting yet another cue, in which I should run up a ramp, and from its hath point, jump, chest open , falling at the inflatable prop at the back of the stage. This fall propels another dancer that is standing on the highest slope of the inflatable.
I try to look to my colleague with a face of “I can’t see shit, and I hope I 1st jump into the right spot, 2nd don’t crash with you 3rd don't get propelled out of the prob in the rebounce of the fall”.
Cue. I exhale slowly, hesitate for an extra second, breath in and run.
Heart open, chest first, diving into the void.
In the air I flashback to the time the prop explode, few days before the piece premiered. I was falling with my chest straight to the ground from about 2,50m high.
This time, I am in the air, but in the void. I jumped not only by the pressure of having an audience, but by trusting my body’s sense of navigation.
I jumped trusting I had enough physical memory for this action to be executed without visual references.
My whole motor system once again, working to compensate my vision on a will of leaping.
Bö check’s my alignment and uses a small device with two short antenna like structures, one of the antenna has a red light that blinks in different rhythms.
"As the cells react to different light frequencies", he said, with his thumb in my right wrist, "I can notice alteration in your pulse quality".
He said that even the measurement of the pulse, is a matter of quality not just of paste. Where himself with his thumb, synchronise with my body, and that's why he can notice my different reactions regarding the light spectrum and frequency of stimulation.
Red, blue and green light. With me he used just red.
He mention how we are an organism compose of cells that are themselves complete organisms, and other acquire bodies like bacterias that share and build the environment where cells live. This cells/bodies are always exchanging information, in a variety of forms, chemically, electric, mechanic and so on.
Regarding Bö there is a tendency for synchronisation between cells, organs, and environment. When people share a room and a similar experience, their heart bits tend to synchronise.
With the different lights, Bö tries to find when my pulse changes, to understand my patterns of desynchronisation.
After checking my eyes and ears with the light, while feeling my pulse, he finds a precise locations on my ears where to place a needle. This location is where very thin filaments, loose ends, of limps, arteries and nerves meet and exchange information among themselves. Like friends gossiping. The needle, in between this channel, shifts the communication pattern creating a cascade that effect the whole organism.
Meanwhile he search for this location, we talk about flocking birds and fish shoals swimming together. Synchronised, this animals never bump into each other, they move as a super organism.
We also talk about coo-regulation between social beings and molecular synchronisation. I’m fascinated by the conversation. He goes on, talking on how much we miss models of abstraction, to really understand the body.
“Nature does not seen to give away its mysteries”.
He talks about the chain of unfolding proteins that set cells in motion, and other mysteries from the body and from physics, like synchronisation of particles even in long distance.
Bö looks for ways to understand the change of patterns in eye movement that start happening years before a disease show any other symptom.
It felt to me he is literally seeing the future.
Simmon treat me this morning. C2, C3 and the Atlas. My Diaphragm, Recuts Abdominis at the ribs. Then Scalene first at the right side, Masseteric, Pterygoid, Pectoralis Minor and Major, and my Teres Minor.
Then he switched sides. After he went to my Splenius.
For a regulation point, at the end of the session, he choose the Quadratus Lumborum in the bladder meridian line. He told me is a functional point in biodynamics but also an integration point in Chinese medicine.
We talked about Wolfgang Fasser. Simmon told me, Wolfgang walked straight to him, on a room with other people, saying: “you must be Simmon! “.
Later that day Simmon had to ask Wolfgang: “Wolfgang since you are blind, how did you know I was Simmon?”
“I had heard so much about you, that I could feel your emotional landscape. So I was sure you were Simmon“.
“How do you see?”, I asked.
“Well, We have no issue with dim light, because we mostly have peripheral vision. The centre is blurred, we can see contrast, red and blue are the colours we can easily identify, but we don’t like red. And you?”, said my friend.
“I have some focal vision. My peripheral vision is not good, what makes me clumsy. My eyes take time to adapt to variations of light, and at faint light, yellowish light, dusk, dawn, shadow, night… either it becomes very confusing, hard to see or impossible to see anything. During daylight I can’t see from far, takes me some time to recognise faces, I mostly recognise people by how they move, their sound or smell. I still can read, not really small letters though.” I answered.
“We have kind of the opposite issue. That’s funny!” They comment jokingly.
When I walk with this friend during evening, they guide me. If anything needs to be read is my turn to use eyesight.
One night after having dinner together on a restaurant, they insisted to invite me for the meal . I look at the bill under the candle lights, and let them know the price. After add up some tip the waiter sound very happy and surprised while wishing us a good evening.
“What a funny reaction.” I thought, finding the enthusiasm of the waiter weird. At home I take the receipt out of my pocket, and check it, now on regular lighting. “Fuck! I read it wrong! My friend tip over 10 Euros!!!”
Feeling embarrassed I never told my friend about it. I still try, secretly, to make it up for my mistake. I tend to always pay them drinks. I have the feeling I stole from them the amount payed on the over generous tip.
From everyone I know, I’m sure they would be the one who definitely would understand me, finding it funny, they would joke about the story, without feeling sorry with the mistake.
I also know they would understand why I never said a word about it, and it isn’t a matter of honesty, but of exposure. Either to admit my “short sightedness” or the feeling of being stupid about making an embarrassing mistake I had little chance to don’t commit.
Is as admiring you will always be bad, in something you will never have the chance to be good at. In something that supposed to be simple.
I surely can’t trust in candle lights…
"I didn’t tell you this, but the other day I couldn’t recognise your face on a photo, sometimes it take me few seconds to be able to see a face, it started happening this year, my eyes are really getting weaker…
I think... my crying this morning was about being afraid of not recognising or seeing you anymore...
When we say “has been long I don’t see you” that imply distance or absence … Would be weird if I start saying “has been long I don’t feel you” ?
While you were still not awake, I softly, with the tips of my fingers stroke you. I imagined I was scanning you. Mapping every detail, fold or crack I could sense in your landscape. I tried to archive your form, as a strong sensation very deep in my memory, so tactile that it would allow me to see you, in my inner eye…
But then, I lay my ear to listen your heart beating. When I was doing so, I was asking to your heart to beat for very long.
I want you to outlive me.
Even if it happen that I stop seeing you with my eyesight, I believe I would still be able to recognise your pulse.
That makes me calm."
I was excited to go the American Museum of Natural History, not only to see the dinosaurs and all the evolutionary line of fossils, but also to visit the different rooms with pure theatrical scenes of wild life.
As soon as I enter the museum I get overwhelmed and a bit anxious, there are many rooms with very dim light filled with people and children running.
Movement in dim light make me feel very confused, because it alters the little references I can make out of the space. The sound of many steps change my sense of balance, it makes me not sure if people are crossing in front of me, standing or just walking slow.
I began imagining myself crashing into a kid, or accidentally falling on top of an elephant, and potentially destroying something or someone.
After getting more comfortable, by stepping increasingly slow, I decided to check the Hall of American Mammals. "I really want to see the wolves". I walked for a while looking for them, until I turn to my left, to what felt like a narrow corridor. I see two lighted windows and a big dark gap in between them.
There is a lighted sign: WOLF. I stop, look towards the darkness and think “they might be restoring this window, that is unlucky”. While wondering in front of that darkness, a family passes and I hear: “Look mom, the wolves, Im so afraid, let's run!!!!”.
The wolves were there, right in front of me, chasing a deer at mid-night. The only window from all that hall portraying a night scene with faint light.
Stepping back, I lean against the opposite wall, and stare at the dark. I try to see the wolves.
“Wolf blind, 'Farkasvakság' the Hungarian expression never made more sense to me then now... I really can't see wolves…"
With my phone, because its camera is more photosensitive than my eyes, I see the wolves though the screen. The picture at the background of this webpage is from this technologically mediated encounter with the wolves.
Hungarians aren’t aware, but they could use it also "csillagvaksag" - star blind.
I had never seen wolves but neither starts outside of screens or photography.
Set a 10 min timer.
Find a place to sit or stand still. Start the timer and a recording device (it can be your phone, it will help you to tune to sound). if you feel comfortable and safe, close your eyes.
Track all sounds you can hear. From the furthest noise, or bird chip to the closest or internal sounds , as your hands touching the fabric of your clothes, your own swallowing of saliva or your pulse.
Start mapping the layers of sound. The direction, or how they move through your sonic sphere, the distances and speed. If you still have room for attention, track how you feel during listening the rhythms of the location you find yourself. Try to echolocate.
Later, or in another day, listen to the recording with headphones. Juxtapose your memories, sensations and feelings. Comeback with your felt sense, to this recorded place. Move from the archived sound-sphere to the memory of the soundscape.