My son Ronan weighed 720 grams when he was born. Pound and a half of butter as many have said in surprise.
He was born at 25 weeks gestation - that's 15 weeks early. The cerebral cortex is smooth at that age. It grew ex-utero in Ronan and in all micro-preemies. Think about that.
Ronan was on a ventilator for 72 days. Cpap for three weeks. He came home on oxygen and we lugged around his tubes and tanks for the first three months he was out of the hospital. So he needed help to breath for the first eight months of his life.
He was in the Special Care Nursery at BC Children's Hospital – that’s the neo-natal intensive care unit - for 150 days. Five months. Almost as long as he was in the womb. From the moment he was born he was surrounded by chaos and trauma and alarms and death. It’s like watching fire trucks and ambulances going through an intersection all day long. And all night.
Ronan died more than once himself. We watched. We read to him in the wee morning hours as he hovered between here and there. So he would hear our voices last if he slipped away. He wasn't expected to come home but he did. The journey since has been intense. Brutal sometimes. And yet the most rewarding and wonderful and incredible experience of our lives.
Destruction. Resurrection.
Life is what happens to you.
Ronan has had many challenges. Severe cystic BPD. ROP with Rush. Lasering. Hernias. Oral aversion. A host of other issues. Massive ongoing interventions while in hospital. Constant tachycardia. Bradycardia. Desats. Ripping the breathing tube out of his throat. Ripping the medical tape off his skin. Pumping oxygen into his lungs manually. Crazy shit… when you think about it.
The result is that he has spent much of his life simply trying to live. To achieve good health. To reach the baseline most kids are blessed with at birth. He has hearing aids and glasses. Other sensory issues. His cognitive profile is scattered. Apraxia. Dysarthria of speech. He vomited five times a day for years. He was on a feeding tube for nutrition until he was 7. We pumped him full of Pediasure and he puked it back up. We had to take him to the University of Wisconsin’s Feeding Program to teach him how to eat. These are just the big medical issues. He didn’t eat. Didn’t sleep much. Didn’t play well with others. We stood over him every waking moment to prevent mayhem from ensuing.
He is on the autism spectrum – though I think non-neurotypical is a more accurate description. The so-called ‘spectrum’ of autism is wide but the word conveys a narrowness – people understand the word ‘autism’ in a limited way. At any rate, this is but a partial list of the challenges Ronan has faced and overcome. A fragment of the great white whale that is his medical history. He used to go back to BCCH for various and sundry procedures, and they’d bring his medical ‘file’ in - stacked on top and bottom trays of a trolley – filling it - with two nurses carrying the leftover armfuls behind.
He fought hard to be here is the point.
And the big picture is that Ronan was given gifts to equal his challenges. This is what walks in beauty with him. Gifts of humanity. Wisdom. Purity. Artlessness that verges on angelic. A nearly eidetic memory for certain experiences and subjects. Limitless kindness. Unending curiosity. Innocence. Authenticity. Creativity. The desire to be a good human being. He has walked through the valley of the shadow of death and climbed out. He knows things about this world we do not. He taught me empathy.
And here we are. Almost 18 years later. Ronan is now a young man. Graduating from High School. He is growing into the world.
My son has always had a hard time with stories. Narratives in books and movies and games. Same as in life. Social discourse is a real time story. It carries the dynamics of drama – comedy and tragedy and banality. I’ve noticed this with a lot of autistic kids and deaf kids too. Those who have entered the sphere of Ronan’s world anyway. I think that’s why non-neurotypical people have such social problems. They don’t understand neurotypical narrative – the stories of life. They miss the peripheral emotional information, much the way the deaf miss all the peripheral sounds of life. But they feel. Their emotion is real. It just interfaces with reality in a different way than neurotypical folk.
So I’ll speak to our goal – the point of Ronan and myself combining our artistic endeavors as we pursue the neuro-chemo-electro-magnetic spin of mind.
It’s about building bridges.
I want to help Ronan build the neural architecture that allows him to understand and enjoy the stories of life. I want Ronan to be able to build – to write - the story of his own life.
Creativity is an engine that builds neurons, and biological and chemical interactions, and electromagnetic fields, and maybe even quantum effects – in other words it builds multiple different structures within the brain, both abstract and physical. Whatever the creative mind is – apart from being an abstraction machine - one thing we know – it can build itself. All it needs is stimulation. Food. Such a strange thing is the brain that the food of this neural growth is an abstraction itself – creativity – or the creative mind… an infinite loop… the more you think the more you spin… the more you spin the deeper you drill… the more you think…
Where does the creative mind live within the brain? Somewhere in the wasteland/fertile fields between the conscious and subconscious. All creative output begins in the abstraction machine that is the interface between conscious and subconscious mind – thus it is but an energy soup. An organized miasma of neurochemicals and electromagnetic fields in the brain that are then translated through other brain structures to the fingertips - which employ other tools of all sorts. Pencils. Keyboards. Brushes. Chisels. Sticks. Balls. Whatever. Pick a thing. Anything at all that can manipulate the physical world.
The point of creativity then is to recreate something of the same soup of physics in the brain of the audience. You’re trying to make them feel the shape of energy you feel but within their minds.
Signatures of all things we are here to read.
So one brain can engage another on a fundamental chemical and electromagnetic level – hopping on the arrow of time - by shaping the energy of the mind and then transferring that energy through a creative output. This is what I want to do with Ronan. More than simply teaching, I think by fueling Ronan’s creative engine – tuning it – giving it more power – more capacity – pushing the complexity of the connected stories that his mind creates – he will build the structures in his brain that will allow him to build narratives – stories – characters – comedies and tragedies.
These structures will inform him and he will be able to use that information – the map of life they create – the shape of energy in the mind that informs that map – transfer it to shape the energy of his own social life and make friends and find love and experience our emotional world. Not the emotions. He feels those now for different things. But the differing roots.
He must keep his own world too… his non-neurotypical world is beautiful. I’ve seen it. Lived in it. I want him to have the same luxury that I do. To feel more. To be fulfilled. To live in typicality and not. Life’s rich pageant.
So that’s the point behind the Hard Cell – behind this whole endeavor. We’re going try to learn how to build a brain by just thinking about it. The power of mind.
Everyone is welcome. Part of this whole project – which encompasses books of fiction – art of all types – from Ronan, his mum, me, my mum, friends, also poetry – games – cooking shows and cookbooks – pretending – Youtube – Instagram – biography – more -whatever – it’s all about sharing what we learn along the way.
The journey with Ronan over these years has been intense and unrelenting, which is a word parents of children who have severe illness and trauma in their lives will understand. Ronan’s mom, Carmel, and I experienced all that – the illness and trauma – at his side. She rolled over in bed one night when she was 20 weeks pregnant and everything changed in that moment. Much of the life we once knew was destroyed. We lost almost everything. Money. Stability. Hopes and dreams. Our relationship didn’t survive.
But out of that blossoms a new life. A different life. A beautiful and unique experience. We adapt and understand that the sun will always come up tomorrow…
As Ronan approaches adulthood I contemplate what kind of life he will build for himself. I am hopeful. It is often difficult to be hopeful in the face of the exigencies and vicissitudes and injustices of life, but the creative mind is an elastic thing – stretches and bends to all manner of tasks.
To those who have gone through these upheavals – in family – in hopes and dreams. There is hope. There is light in the valley of the shadow…
The journey Ronan and I are undertaking is an effort to see if the development of the creative mind can help a non-neurotypical mind bridge the divide to the neurotypical world. The Hard Cell is the gateway into this map of mind that we are trying to draw. The cartography of a mind. One mind. Ronan’s mind. Creativity is our lens. Our pencil. Our spin.
Ronan has always been creative. We’ll document that through the Hard Cell. This project – the Opposite Man project from the Hard Cell Collective is the name we’ll give it – since names are important - is about exploring and strengthening his creative muscles. All I know is the creative process. It’s the only thing I do well – I’ve devoted my life to the pursuit of its personal meaning. I have a thin skill set in life - but I can spin – I can do that – so we’re going to spin – Ronan and me – Dick Amoeba and Milbert Smirk – neural cartographers and builders of imaginary bridges.
Ronan’s creative endeavors are that map of mind – our topography – we will see how he has dealt with narrative up to now in the documentation we have of his art and play, and then see how his understanding of narrative develops as we move forward, and how it colors his social world.
Can we make a difference? Can we build the neural garden of Eden within Ronan’s mind?
We’ll see.
Dick Amoeba
Butterbees and beer and bugs are ghostly quantum nothing shrugs.
dickamoeba@gmail.com