Dr. Sarah Marusek

What happens if somebody or something outside of your control pushes you into a dark closet and then locks the door, leaving you all alone and apart from humanity, without being able to realise any of your hopes and dreams?

And what if all of this is happening without anybody else knowing or seeming to care?

In other words, what does it do to you if your very being desperately needs help from others, but your acute need – with all of that accompanying pain and suffering – is totally invisible to the outside world?

I can tell you based on lived experience: fear, self-loathing, hatred and anguish. Most importantly, there is a monstrous sense of exclusion, as if you are not even a part of our collective humanity.

I remember first reading Ray Bradbury’s short story ‘All Summer in a Day’ as a child, probably aged eight or nine, and it absolutely terrified me. The story was so haunting that I developed an artistic obsession with sunshines as a teenager and designed one for my tattoo.

Well, now I know why: I have had a monster inside of me since birth and whenever I have looked to others for help, they end up locking the door.

In Bradbury’s powerful short story, humans have colonised Venus where it rains and pours so incessantly, all of the time, that it creates a ‘concussion of storms so heavy’ that they transform into ‘tidal waves’. Of course, this being science fiction there is also a catch, as an hour or so of sunshine emerges every seven years on Venus. At the start, a group of young school children, aged nine, wait incredulously for the sun to appear, incapable of remembering what it had been like when they were only two years old.

The childrens’ memories of the sun had long been drowned because morning after morning they ‘always awoke to the tatting drum, the endless shaking down of clear bead necklaces upon the roof, the walk, the gardens, the forests, and their dreams were gone.’

Up until now, their lives had consisted of only two dark settings: wet or wetter.

However, one young girl, Margot, is unlike the other children:

She was a very frail girl who looked as if she had been lost in the rain for years and the rain had washed out the blue from her eyes and the red from her mouth and the yellow from her hair. She was an old photograph dusted from an album, whitened away, and if she spoke at all her voice would be a ghost.

Margot is different from the other children because she was born on Earth and has lived and experienced the sun, the only thing that has the power to bring her to life. She loves speaking about her sun memories, but the other children refuse to believe her and respond with jealous anger. After all, being from Earth, she is alien to them.

In fact, her classmates only despise her all the more for not being the same: ‘They hated her pale snow face, her waiting silence, her thinness, and her possible future.’ You see, she is struggling so much on Venus that her family is reconsidering moving back to Earth.

Margot’s alienness is not of her own doing, but others do nothing to try to understand her.

On the day when the sun is forecast, the class bully sees Margot brimming with anticipation and hatches a plan to tease her by pretending that the forecast is just a joke. The other children mindlessly go along with him. So, while the teacher is out, they collectively drag Margot into the tunnels and lock her in a dark closet. Although they can see the door ‘tremble from her beating and throwing herself against it’ and they can hear ‘her muffled cries,’ they still turn and leave her while smiling, ‘just as the teacher arrived’.

‘Ready, children?’ [The teacher] glanced at her watch.

‘Yes!’ said everyone.

‘Are we all here?’

‘Yes!’

Then, all of sudden, the sun finally appears. This ferociously bright ripping and shredding of their previous reality finally overwhelms them: ‘The children released from their spell, rushed out, yelling into the springtime.’ The ensuing life, joy and happiness in these children is thrillingly spine tingling and absolutely world stopping. For about an hour.

Because the rain soon returns like an avalanche of water and the darkness repossess their worlds. Only then do the children suddenly realise where they had left Margot. Unable to process what had just happened, what they had done, ‘They could not meet each other’s glances. Their faces were solemn and pale. They looked at their hands and feet, their faces down.’

The children slowly walk back down the tunnel to the closet door. However, by now they are met only by silence. They open the door and let Margot out.

And that is it, the end of story. Considering that it contains less than two thousand words, this little parable packs a huge fucking punch.

Margot has knowledge about the universe based on her own lived experiences, but the other children refuse to believe her.

How is it that phenomenology is still not a serious form of knowledge production? There is so much of ourselves and our world that we will never know about because of our own unwillingness to really listen to life.

As a foetus, I was exposed to an X-ray shortly after being conceived and then my nervous system was damaged during birth, injuries that have never healed. Because of this, I have never felt safe in my own body – it is not yet structurally possible – and I am always scared and in pain. Nevertheless, my life experience has never been recognised by anybody else because for whatever reason it is beyond human comprehension.

Phenomenologically speaking, I am not only alien, unlike other humans, but I am also a monstrosity, as my nervous system is out of my own control. This is why I have been suffering seizures ever since having spine surgery.

Because I am always in pain, my nervous system is always defensive around others and also shorts whenever my body needs to perform any task. I can do things without pressure, and often do them brilliantly, but as soon as there is any expectation my nervous system seizes.

This is always true whether I am competing in high level sports, drawing a picture, following instructions or trying to express my pain and suffering to others; my body convulses in agony because my injuries are invisible and nobody else can see how much I am struggling.

I have a monster inside of me, formed by scar tissue. My facial nerves were damaged at birth and they do not call trigeminal neuralgia ‘the world’s most painful condition’ without reason. My body organised itself around this agonising injury to protect me, and it worked beautifully, but I also ended up so disabled that I could not make any big choices in life.

I never got the chance to choose a partner, pick my career, or have a family.

Like Margot, I have felt alien my entire life. I was even bullied as a child by my friends simply because it was so effective: we do it because you react. I would cry and scream and feel like the worst person on the planet.

In response, I decided to hide my pain and suffering deep inside of me by squeezing it into the smallest point possible and holding onto it as tightly as I could. But it is always there, so my own unique experience of the world has never been what anybody else has imagined. You all were wrong and that has only caused me more pain, which is why I am now social isolating.

I currently suffer terrifying seizures simply when other people misunderstand me. And whenever this happens, the monster tells me it is because I am a pathetic loser and do not deserve to live. The worst part is that when I am seizing, I also cannot breathe. All of the anguish of living with a monster inside of me is so overwhelming that my body just shuts down.

At the same time, right now I have never been more desperate for recognition in my life. But the last two doctors I worked with both ended up giving me one too many seizures. And so did my acupuncturist. I am socially isolating now because I know that help will never come from the outside.

I need to do this entirely on my own now. But that does not mean I am not angry with everybody. My monster locked me in a closet when I was born and I tried to tell you all but you did not listen. Indeed, the closer I come to healing my injury the more stored rage I am uncovering towards the world.

Even these blogs cause me pain, because no matter how much I try to explain nobody will ever really understand. At this point writing and drawing is the only choice I have to keep going. My hope is that expressing myself now will get me through this final phase of healing, which is the most painful and terrifying part yet. I need an ice bath just to fall asleep.

So please do not leave any comments, or well wishes, as you will only make it worse, especially if you think you understand. 50 years of living with a monster has proved to me that you cannot. Thank you.