Contents | Chapter 1 | Chapter 2 | Chapter 3| Chapter 4 | Chapter 5
“Five thousand dollars per week? That’s insane,” cried Ben McLaren.
His audience was a stern-faced administrator backed by a stone golem of a nurse. This would likely not be the first time they were pressed into service, defending the indefensible, but this had become the job. Ben hadn’t slept properly for weeks. The same howls of pain that woke him in the night were coming from behind a door to the office he sat in. What could he do?
“Well, Mr McLaren, we have customers who can afford our care, and it is not right that we deny them a space in this facility whilst you cannot pay,” said the administrator. Ben had forgotten her name. Only the nurse wore a tag, and he didn’t feel like meeting her steely gaze with a first name.
“This is a state facility, man; surely there is something we can do here? I can’t go to work and care for my daughter. If I don’t work, I can’t put a roof over our heads and food in our bellies. What is this?”
The administrator took her glasses off and stared into Ben’s eyes. They were glacial blue, remote, solid and lifeless.
“Mr McLaren, it is not the business of this institution to provide handouts. If you have insufficient funds, I suggest you seek alternate employment or other care arrangements. This is not a charity, sir. It is a business unit and is run as such.”
The administrator sat back to let her words sink in. The glint of her Church of the Brotherhood cross caught the sharp ceiling lights.
A true believer. Great.
Ben sighed. He knew coming here would yield little, but he had to try. Perhaps there was some advice they could give that was not online or not common knowledge? If there was, it was not forthcoming.
“Shay has level three autism. Each diagnostic marker places her behaviour and needs at the far corners of the spectral chart. In addition to the developmental challenges, praxeological hurdles stand between her and care here. You can see how this skews the cost/care equation, Mr McLaren.”
Had he heard this woman correctly? Not only was he too poor to expect state assistance with his daughter’s care, but the facility found her not to be cost-effective. He winced at those words, wishing to purge them and remove the foul taste they left. He found he could not. When had this become the default? Or had it always been sliding towards this? Was the memory of care coming before cash just some false memory viewed through rose-tinted glass? The clock on the wall ticked as tears trickled. He stared at the stuttering secondhand, lost in it, unable to face the two women before him. “I’ll go fetch Shay,” said the nurse, breaking the spell that bound the room. The administrator made more sympathetic noises, but Ben didn’t hear them until Shay came into the room, sobbing and clutching a stuffed bear—Bare Bear, her favourite.
“And since the Party has prudently chosen to remove the care provisions holding back the state, we can now better focus our resources, which I am sure you understand, Mr McLaren. It is all about us pushing ahead, forging a newer, prosperous future.”
Ben took Shay in his arms, holding her small head in his great hand and said, “I’ve never met a Nazi. I didn’t think I ever would, but life is funny that way. Go fuck yourself, lady. You and your party.”
With that, he left the Queens care facility for the last time, tear-stained cheeks held high.
“You said what, Dad?”
Ben repeated himself, and it was the first time the son had ever heard the father swear. He arrived home from the care facility at the same time as Craig did from school.
“I’m gonna have to take some time off work until I figure out what to do with Shay. It’s gonna be a tough few weeks, son,” said Ben, “My holidays are not paid, so we’ll have to live off what we got. It also means Shay will be in the house from now on since I can’t afford her carers.”
Her father and older brother, Craig, became adept in defusing a myriad of situations that could and would lead to Shay lashing out, punching, kicking, screaming, biting and sometimes even harming herself. Following all the best guidance, Ben had kept a diary of his young daughter’s triggers. Her toys had a definite position in her room. Her food had to be laid out just so. Always the same plates with the same cutlery. The doorbell had to be disabled for the disruption it could cause. Craig’s friends couldn’t come around. Riding the subway with her was out, as she reacted violently to every sound, shake and motion of the geriatric trains. “My grandfather rode on these antiques,” Ben often remarked to anyone who would listen. For Shay, everything was too much. Compromise wasn’t a thing she could learn or grant. It was as if her very soul was tortured and tormented, trapped in an avalanche of sensory data, too rich, too much. Each new day was greeted by screams, yelling, and violence visited upon Ben and a preternaturally understanding Craig. It had been three years since a car accident had robbed Craig of his mother. Now, at thirteen, he was left shouldering a burden that could easily floor a thirty-year-old.
One monumental tantrum over a misplaced teddy bear had resulted in Shay ripping some of her hair out. Cutting her tight curls short wounded Ben, who had seen so much of his dead wife in the gorgeously concentric corkscrews thatching Shay’s head. It reminded him of the girl he met all those years ago in a neighbourhood deli.
Isobel.
She had worked there, and Ben walked the three blocks each morning, hoping to be served by her. He was tall, gangly and moved without elegance or grace. He spoke with neither of these things. She had asked him out, much to his delight and surprise. Later, she confessed to him that she expected he was working up to asking her, but she lacked the patience to wait any longer. She enthralled Ben. She was quick, savvy and everything he wished he could be: gregarious, open, mercilessly kind and easygoing. She was the first girl to see through the fog of clumsy awkwardness to his core. To him. She was naturally beautiful, with confident, bright eyes under an explosion of curls—his one abiding memory of her physicality, evocative as a cherished scent from childhood. A gift to their daughter, now sheared off and on the floor. Every lock cut killed something inside him, every thick black strand a piece of his soul shorn.
A week became two, which became a month. Ben’s employer, a medical device manufacturer, was reaching the limits of patience. “I don’t know how much longer I can hold this role open for you, Ben,” said his boss.
“Just gimme a week or two, Mr Jenkins; I’ll sort something for my daughter,” said Ben. Pleading was becoming the default. Seven days into the begged-for-fourteen, a new storm cloud arrived on the horizon. Craig had found Shay collapsed in the living room. They rushed her to hospital, the ambulance taking the last of Ben’s savings. Through slapping double doors and swishing automatic barriers, the trolley clattered, his daughter a mess of tubes and hoses, nurses and doctors swarming. Ben watched them take his only daughter beyond his reach for scans and whatever else they could do. The waited hours seemed to be more than the expected sixty minutes. Timed dripped slowly, percolating through worry and fear. Nurses spoke of payment plans, discarded leaflets vied for his business, the business of healing his daughter. He discarded them all in his waiting room vigil. Then morning came with a fresh sun and news of Shay.
“Your daughter suffered a transient ischemic attack caused by damage to the parts of the carotid artery. We are still running tests, but early genetic results have ruled out Moyamoya disease, though perhaps the episode was caused by something else we have yet to find. Shay was in surgery for eight hours, and she is stable now, but we don’t know for how much longer. Scans have also shown that she has extensive basal ganglia erosion. I cannot speculate on the cause at this stage, but I must inform you that in the coming months and years, her speech, mobility and quality of life shall be severely impacted.”
A stroke. That is what the doctor had said. Ben had to look it up. His baby girl had a stroke, and she had brain damage. The following prognoses were short on hope, too. Forced by the payment plan and the treatment needs, Ben returned to work, a husk of himself. The Sisters of Charity came to care for Shay. The organisation was new, but The Party and their “ultimate liberalisation of the state” had seen the need for care rise exponentially. The women came and tended to Shay, prayed, fed and cared for her over the bed that was now in almost permanent residence.
“Her last days are gonna be in that bed, my little girl, oh Jesus,” cried Ben. His wet eyes were buried in his forearm, his exhausted mass leaning on a doorframe. Craig cried, too. The younger McLaren man threw himself into his acting, receiving great acclaim from his teachers, whilst the older started to scramble for “hail Marys”. Weeks passed, and a gloom descended upon the house. Shay was worsening. She slept most of the time now, barely responding to external stimuli. Ben slumped at his desk, exhausted, drained and falling apart. One day at work, Mr Jenkins slid onto Ben’s desk and passed him his tablet.
“What’s this?”
“Take a look at this woman’s research. Ground-breaking stuff, I…I know you’ve been struggling, Ben. Maybe this Doctor, Selina Garvey, in the UK, maybe she can help you.”
Dr Garvey was a specialist in cognitive bio-engineering, tending towards mechanistic cures instead of strictly therapeutic ones. She had demonstrated successful if extremely invasive, ways to cure a range of degenerative brain defects, as well as developmental issues. Ben took her details down and started a correspondence. The Hail Mary arrived at the height of the summer of Craig’s fourteenth year. He proposed to his son that they “move to Glasgow, Scotland and get Shay the help she needs.”
Craig had no idea where Glasgow was, knowing of Scotland only through tropes of tartan and bagpipes. His life was established and anchored in New York. His friends were here, his school was here, and then there was his acting; he was making headway in drama and performing. He had “talent,” according to his drama teacher, “real talent”.
Dr Selina Garvey was in Glasgow, with her lab at the university and links to the hospitals there. “Besides,” Ben told his son, “they got acting there too.”
The father was excited, animated and alive for the first time in many long months.
“But how do we get there? We have no money, Dad.”
The for sale sign answered Craig’s question. Long Island City was in the third blush of gentrification, and their tenement was prime real estate. Glasgow arrived in a blaze of activity, visas, paperwork, and medical checks. Finally they landed in a tenement much different from their small red brick one on 35th Street. It was sandstone, and its bay windows stared out to trees with the promise of a river beyond instead of concrete, cars and commercials. The ceilings were over three metres high, corniced, and capped each bright and airy room in a light that eluded their old apartment. Ben joined the Work Exchange and soon found employment as an engineer based in Edinburgh. He took the rapid transit each day to the other city, finding that his hours were much reduced, his pay much increased and that Scotland was not at all what he had expected.
“The pizza sucks,” was Craig’s opinion—at least the one he chose to say aloud. In truth, he hated Glasgow. The weather, school, the accent, the lack of friends and now the lack of acting. All of the sports “sucked” and were foreign to him. They were here for Shay, though, and Craig would soon be able to do what he wanted anyway. He was not long away from leaving childhood behind. Daylight persisted beyond nine in the summer evenings, and a weak and diminished Shay weakly shuffled in her bed. Craig watched her, sitting by the bay window, thinking about life and how much it had been dumped on its head, spun out of kilter and all because of his sister. All other needs were subordinate to hers. He wondered, watching the catatonic girl prone in her hospital bed if any of this would work. Would he have his sister back? Would all of this have been worth it? And if she came back, would he recognise her? Would she be the screaming, yelling torrent of care and attention again?
She had been away for a fortnight, in hospital with Selina Garvey. Ben had been granted time off, too, without special pleading. He and Craig walked to the south side hospital each day to see Shay, even if it was just through a glass partition.
“Any day now, she will wake up, and then we can run the cognition tests,” Selina would say. What day was “any day”?
On the thirteenth day, post-op, Shay woke. On the twentieth day, she spoke. When she returned to their new home, she spoke in complete sentences, understanding what was said and compromising when required. She said little but was sincere and direct when she decided to speak, preferring to read, absorb and watch.
“The obsessive behaviour is part of an inbuilt curve, something so deeply wired that it can’t be altered or removed,” said Selina Garvey to Ben as they watched Shay play on the living room floor of the Glasgow tenement. Craig didn’t quite regard it as home. He had seen the new low-cost scramjet launches from London just days earlier. ‘Old World to New World in just forty-five minutes,’ said the adverts. He wasn’t too interested in this “curve” that she, Dr Garvey, spoke of. Shay was building a Lego house on the floor, concentrated and happy, her industry unbroken by noise and external stimuli.
“What do you mean by a curve?” Ben asked. Selina kept her eyes on the nine-year-old child on the floor, barely believing the procedure worked. She knew it was a one-in-one-hundred chance, but one that could propel her to new heights. “The curve,” she began slowly, “is a metaphor; I think of the behaviours we tend towards as geometries of the brain, nothing linear, but instead a pattern bound to a gradient, a contour, much like a large hill, where once maybe an ancient fort sat. The brain is a structure built upon that older structure, nested structures in time. Each contour informs the new structure, helping to shape it in ways that are often obscure, buried for want of a better term. The mind has no option but to follow the foundations of what came before.”
Ben nodded as if coming to some sort of understanding; Craig kept his eyes on the TV, barely able to suppress the latest Scottish-ism he had learned: what a load of pish. His manhood was yet to blossom, but enough of it had grown to allow him insight into what his father saw in Selina. Ben’s indulgence of her was more than just what she had done for Shay. His gaze lingered too long on her, his voice changed in tone when she was around. At once the realisation of something romantic humanised his father while creating a wedge between them. Perhaps the wedge was made from the realisation that Ben had drives, feelings, wants and needs that stretched caring for his children, caring more for one than the other. It was one thing to recognise that imbalance of needs but quite another to come to terms with it. All the while, the physical manifestation of it all sat on the couch, speaking of curves and rambling on about the mind.
Ben saw increasingly more of Selina. For now, that is what Dr Garvey had become. They had coffee and dinner sometimes, Craig busying himself with school work and finding that, for the first time, he had a sister who was more than just some burden of care. They played games together, and he taught Shay how to cook, knowing Ben couldn’t and wouldn’t. The two became inseparable. A year passed, and Craig was no closer to getting on the scramjet to NY, but Shay was now ready for school.
The ten-year-old was more than ready.
Craig could see the light at the end of the secondary school tunnel, his final exams coming up fast. Shay had completely skipped primary school, testing well enough to start her scholastic career at the other end of the secondary scale from Craig. For a short window of time, they both went to the same place, travelling to and fro with one another, spending the school day apart as Craig did drama and prepared for exams. His sister assiduously avoided the bigger kids in the playground, opting to read, absorb and continue growing, and all the while, she remained under the now routine gaze of Selina. Of her. Shay was talented, well able to understand and focus, perhaps unnaturally so for a girl knocking on the door of puberty. The one area in which she excelled was music.
“Might have a virtuoso on your hands, Mr McLaren,” said her music teacher at a parents meeting. Ben cried that night, alone in his bed, wishing for the first time that Isobel could see how Shay was developing, feeling terrible for the shame and guilt he felt that somehow the autism had been his fault, something he had done. His brother was autistic, so he felt that, in some way, he had introduced this to her and held her back. All the while, he focussed more on who Shay was becoming whilst losing sight of who his son was. It was too late that Ben realised the torrent of change washing through American politics was sweeping Craig along with it.
“People have always been afraid and resentful, son,” Ben’s father once told him. “That’s why nobody listens to normal folks in this country. Too many people get by exploiting that fear, that distrust, and it takes a lot of dollars to change that. There is too much profit in chaos, in convincing good folk of stupid ideas, so that’s just how things will go in this country.”
Ben didn’t know what his father had meant then, choosing to avoid politics mostly due to its boring, pedantry-inspiring reductionism. Now, though, watching his son skirting manhood, sitting at the dining room table, phone in hand, watching Reid Ralston stand before a fluttering American flag, “just saying it like it is”, he felt the sense of his father’s words. The weight was there, too, the true heft of wisdom, of knowledge imparted. The news anchor’s bombast was loud and clear, as was Craig’s interest. He stood for a moment watching his son, wondering whether the words chimed with Craig because he missed home or because it sounded and felt like the opposite of everything Ben wanted to say. Perhaps it was both?
“America is the greatest nation on this planet. We recognise that, but does an ungrateful world? You must ask yourself, my fellow Americans, am I ready to represent freedom? Am I ready to promote freedom? And what will I do to enshrine these values? What will I give of myself to maintain our great and sacred nation’s dominance of this planet?”
Craig looked up from the speech and saw his father. He could not read the older man’s face. Ben, on the other hand, knew contempt all too well. He walked out of the room, feeling that something beyond his daughter’s condition had changed, and this change was not for the better.