I want to tell you a story. It starts, as most things do, with a birth. Actually, it starts with two, maybe three (the numbers change with every retelling) missed births. This birth was successful, so much as it produced a child. This child was born during a time of deep and penetrating uncertainty; during a war that never quite happened; in a time of strife and class warfare, with effects still felt to this day. This child was born during a time of endings, of possible annihilations.
This child, who we shall call Aurelia for the sake of labels (the grasping necessity of language, always needing to name things in order to understand them), was born not that long ago, but long enough that medical science was still learning about genetics; long ago enough that names didn’t exist for what was about to happen; long enough ago that decisions made then still don’t quite make sense now, despite persistent examination.
Aurelia means ‘golden’, Aurelia often feels anything but.
Birth is a messy, painful, emotional affair, despite the somewhat sanitised versions our entertainment industry offers forth, and that is in perfect circumstances, with a healthy baby as a result. Aurelia, golden being that they may be, was not a healthy baby. Genetics, impartial, cruel judge that it is, bestowed upon the poor child a difference. Language, as frustrating and impotent as it can be, didn’t have a name for the difference. The doctors had to make one up; a long, polysyllabic jumble of consonants, Latin and vague promises to give it meaning in the future. To this day, Aurelia has it memorised.
The child caused a stir the day of its arrival. Stunned, the doctors retreated to a room adjacent to the delivery room, whispering nervously, debating possible courses of action, reasons for the deformity they saw. The mother, spent as she was from pushing the child out (with a little help from surgery), knew something was amiss. No one had talked to her since the child entered the world. Time passed, relativity keeping a careful eye on perception, until a senior doctor told the mother that they didn’t understand (remember, Aurelia hadn’t been named yet, and this name is a name of their choosing) what was wrong, and that the child needed to be sent to a specialist hospital. That would be the last the mother would see of the child for over two weeks.
The human body is a curious mechanism. It is a beautiful and elegant harmony of biological processes, an evolutionary marvel that creates human art forms. It has moments of forgetfulness, or of malice, or of incompetence. Genetics is complex, understood to a certain degree, and confuses to all but specialists (and even then, they don’t understand everything). Make no mistake, the human body is beautiful in all its forms, regardless of external pressures. At least, that’s what Aurelia tells themselves most days.
Not too long ago, Aurelia, in a quest to understand what happened to them, requested their medical notes from the hospital to which they were sent as a child. Oh, they understood what happened, on a sensory and experiential level – they were the person being operated on after all -, but they wanted to know more. Perhaps more importantly, they wanted to know why. Perhaps they felt that enough time had passed, that the wounds had healed enough to withstand poking through surgical notes, letters between the surgeon and the GP, letters between the surgeon and a younger version of Aurelia. It is probably best left unsaid how that turned out.
Life is spent chasing meaning. For some, that is a career. Others, making lots of money. Others still, saving and protecting people. Life is spent trying to create a why.
“Why was I born?”
“Why do I go to this school?”
“Why do I look different?”
People are taught to look forward, to look towards a potential them that may exist, if they eat their vegetables, do well at school, behave responsibly and kindly. People are taught to trust that if they work hard, knuckle down and grit through, eventually they will be rewarded as is their due.
What very few people are willing to admit, is that luck dictates the future. Luck dictated the past, dictates the present, and it will continue to dictate the yet-to-come. For some people, this luck is benevolent. It puts them in the right country, in the right family, at the right time. Others, it is ambivalent, makes for a life much harder and narrower in scope. It is not malevolent, luck. It bears no ill will to those it does not favour, but it does not tend to assist everyone.
Luck also does not suffer fools, and grows impatient with people who squander it. Aurelia squandered their luck, by endlessly looking backwards.
A brief biological interlude. Aruelia’s exploration of their medical notes did yield vital clues about the past. Clues that they hoped might answer questions that hadn’t yet been asked. Clues that might present some sort of resolution to the mental turmoil Aurelia had subjected themselves to for close to twenty-five years.
The condition they’d been born with finally had a name. Two geneticists had isolated the defective gene that had caused the deformity, classified it, and as is custom, had the condition named after themselves. Gone was the overly long, made-up temporary name that had been created in haste, replaced with three words.
Imagine, if possible, the human skull. It’s probably a smooth, rounded oval shape, with the jaw and chin jutting out at the bottom, eye sockets spaced evenly apart, teeth aligned in fairly even rows. That domed part? Where the brain lives? It bears a striking resemblance to the Earth. Continents are huge sheets of rock, slowly moving across the globe, held up by the mantle. Fault lines exist where two sheets meet, and friction eventually releases as earthquakes. Take a few steps back, and hold on to the idea of sheets, or plates, as the geological term describes them.
The human skull is not one solid mass of bone. It is three smaller plates of bone, that grow with the brain in the womb, eventually fusing to become the archetypical domed shape that is so familiar. This process takes years, ordinarily. This now-named condition, a subset of a broader category, causes that fusion process to happen, prematurely, while the child is still in utero. Understandably, this causes a problem. The brain is still growing, but it has nowhere to go. The skull, which should be growing with it, has instead fused too early. The brain does what it must, and continues to grow. The skull has fused, but the bone is still malleable. The brain pushes against the bone, deforming it. This has the effect of creating an elongated skull. This results in a child with, delicately speaking, a unique cranial profile.
What happens next is a cascade of events, both biological and medical. The child is unable to breathe properly, so must be intubated. Surgery needs to be conducted to resolve that as quickly as possible, and the child must remain in intensive care for an indeterminate period of time. What happens in the surgery? Well, the gory details will be spared, but rest assured, they’re not pretty.
Aurelia requires close to 16 years’ worth of surgery to reach a point where their face and skull are passable. Physically, Aurelia is as close to normal as they can be, circumstances permitting.
But Aurelia grew up without a normal childhood. A heartbreaking story, if ever there were one. They spent a lot of time on their own, or in hospital, and to this day, they prefer their own company. They have let in an achingly small number of people, but exclude and push away almost everyone else. Their family has broken apart, and Aurelia feels responsible for this, despite protestations to the contrary. Aurelia cannot stop looking back.
They also find it difficult not to end their own life.
Aurelia is married now, to a woman who loves them, much to Aurelia’s bemusement. Aurelia is fascinated by beginnings, because they cherish the idea that a new start always exists for someone else.
But they never forget that, but for luck and timing, things could have been different. And they’ll never stop feeling guilty for the disruption they brought to the lives of others. And above all else, rings that name, the one finally given to their condition:
Saethre-Chotzen Syndrome.
For Aurelia, it marks the beginning of understanding, the beginning of healing.
Perhaps that is why Aurelia is so obsessed with beginnings.
Postscript: it would mean a whole lot to me, if you feel like doing something, to donate to Great Ormond Street Hospital. They do amazing work for very sick kids, and they’re close to my heart.
Fleeing Indecision 