It could be seen as an inevitable thing, as solid and real and present as the coffee table, an ornamental feature that was absent of books but littered with magazines. Free magazines with lose articles of advertising packed in neatly between the leaves. Magazines which had been and were routinely given out, passed over the banister at the peak of the upwardly reaching escalator of exit A of their nearest underground station in the upmarket and highly westernised east side of Beijing, near the Sanlitun area.
Yet the facts of this were true to him, like lumps of coal they left a palpable residue on his skin and so his person as he rotated them, curling them over and up against one another till their surface became eventually smooth and gentle. Facts just as fine and caustic and darkly fearful as another small boy might fear night terrors of wild animals, deranged and free having escaped from neglected zoos, or furious purple bolt lighting, the colours made garish and otherworldly by the combination of high congestions of urban heavy metal 2.5 pollutants and the natural chaos of a thunder storm, to the kind that cracked and whipped down upon various points in the middle distance with a cruel kind of teasing about the way it licked the city’s mountainous limits. That the young boy’s bare legs came up to the base of the table concerned him, as he reached that extremely anxious and uncomfortable age and the awareness of his growing and maturing presented the Boy with an increased dimension of urgency to his already fixated obsession. The facts were that the boy sincerely felt, that time was obviously limited and that his was far more limited than most.
For his couch to television positioning, now the decision would have to be made as to whether to sit upright, vertical and straight, move the table further away, or even insolently prop his feet up upon its marbled Birchwood and glassy concave dip. The Boy of course would do none of these, choosing instead to simply stop watching T.V. But this was the conclusion that he was already reaching, without really having even considered the table at all. Fixated bodies all after all, tend to give furniture and comfort very little time or consideration.
so as the young child interviewee looks both deeply meaningfully and somehow vaguely absent at the same time into the eye of the camera, the Boy once again begins to question, whether the face he is currently observing, is now that of a frozen body, an expression that is now dead
Our Boy was watching a film, downloaded and stored on a USB in the shape of a mouse that was plugged into a custom designed socket by the side of the set. It was one that he watched already, many times in fact. Therefore, this was a recording that he could watch with a kind of familiarly boredom that felt somehow comforting and indeed safe. The USB drive was at all non-watching times kept safe in a cabinet by his computer, and the drive’s socket to be blown free from dust before each usage. After finishing a quick snack of name brand and expensively purchased rice cakes, topped with rough peanut butter, both of which the Father bought to make the kitchen cabinets (those that he never actually opened to visiting guests, but still believed that their presence would be felt) seem more cosmopolitan, believing that a strict dietary emphasis would connect the Huang family vicariously to New York joggers and smoothie makers half way across the world, joggers living and running in a country that he himself had not yet had the opportunity to experience, and rice cakes and rough peanut butter that he himself would never acutely eat. This snack the Boy sometimes washed down with cold and sugary ice tea or the thinnest watery milk possible.
He would soon release the images and their resonating sound up onto the screen and recline to the cool wave of the opening credits washing over and descending upon him through the room’s five tiered speaker system, set up by the Father to create the absolute and perfectly harmonious balance between the output of the medium and a person’s limited ability to intake. The Father, sometimes late at night, forgetting that he had a family and over a hundred neighbours sharing the same tower block, loved to use the system to entertain his incredibly important late night visiting guests, normally portly businessmen with solidifying dinner stains still on their shirts and baijiuo spirit wine still on their breathes, by employing the attractive and very impressive speaker system, to bolt out stunning renditions of all the current KTV favourites, for he was in fact quite the talented vocalist.
All the carful considerations of the room had been lengthily undertaken by the Father, through months of meticulous planning interposed with sporadic flourishes of inspired and chaotic change. Just because a ceiling-to-floor wall mounted decorative woodcarving had already been measured, positioned and mounted, didn’t appear to the Father to present any significant reason why it could not be turned 90 degrees and shifted four inches to the left before the rice for lunch had boiled. As the events coordinator for the Beijing Foreign Experts Investment Buru, whereas his own father had himself been an iron ore distillation worker, a job that caused his own life expectancy to be seriously reduced; last minute simply meant innovation and a clear sign of good fortune. This approach had meant that the colours of the walls, the decade influencing that particular season’s choice of antique period piece furniture had all been moved frequently and with notably sporadic haste. Each time the Father hired a new personal style guru, a partial creature, more of an autonomously leaning cigarette with the stalk of a man or a women attached and dragged begrudgingly behind a trail of feathery ash, these were figures always sheathed in black silk with a single decorative red flower stuck with a pin somewhere on their person, these were those who sneered when the Boy called upstairs to operate the intercom system so as to let the interior decorator inside who was currently waiting by the gate, staring into its fish eye lens and attempting to make out via the tin pan speakerphone, essentially inaudible dialogue.
Because of this persistent tide of new surfaces and textures, cloths and matted throwback vintage seat covers, the Mother now mostly retired to the bedroom, where she had had installed a small wall mounted television and a kitsch little bedside fridge. She also felt in there more comfortable to smoke, away from the eyes of her son, who could so distinctly smell it leaking through the boards of the floor, slowly setting upon the room like the finest tentative snow. The Boy now only occupied the central communal room between the hours of five and nine, after which his father would arrive having spent another dinner in the company of their employed decorator who would have likely presented him with the latest e-journals on trends and swaying fashions. Both would then arrive in a flurry of strong alcohol and weak ideas. On their best, most inspired nights, the Father would immediately in a slightly over the limit haste begin hacking at the carpet or the curtains with a kitchen knife, not only while shouting back over his shoulder to the thin, chain smoking designer but also inhaling massive quantities of the microscopic fibres being flung into the air until his breathing would become so affected that eventually he would ultimately always feel the need to be sick. By this point in the evening, with the Mother tucked away in comfort nicely under her own covers, the boy would be in his bedroom in close-textual study of the night’s new online articles, headphones pushed firmly in, hard enough so as not to be distracted with his Father’s raising voice and subsequent coughing fits.
The Boy now carefully eyes up the first appearance of tonight’s young child interviewee, a name that he feel by now as if he knows fairly well, if not a little overly intimate due to the incessant and near obsessive re-watching of the pre-recorded AVI sample video. The digital video clip being streamed and then downloaded some four years earlier, but the filming having taken place a significant time prior to the Boy’s discovering of it, so as the young child interviewee looks both deeply meaningfully and somehow vaguely absent at the same time into the eye of the camera, the Boy once again begins to question, whether the face he is currently observing, is now that of a frozen body, an expression that is now dead, that is one of a corpse.
Approximately 256,000 children die from leukaemia in a year, or somewhere within that region. The televised child’s shaved head is so clean and sharp, that you can’t catch a glimpse of any remaining follicles attempting to poke their way back through the skin. It’s as smooth as a doll’s. The televised child is calm when he speaks and this fascinates the viewing Boy. He watches the screen for any slight give away, not a tick no clue, not a sign of the massive repressed anxiety that he is currently undergoing about the whole death process. Even after so many viewings, on this video he remains studious and seriously attentive. The Boy moves his hands nervously, uncomfortable under the backs of his thighs as they are pressed against the couch. He wants to get up, walk to the kitchen and collect a snack-size pack of overly salted peanuts, but doesn’t want to deal the salt that will be left upon his hands. Once he attempted to regulate his dietary intake according to the latest studies and printed statistics on which food groups aided or deflected the possibly of C, but the more the big L began to dwarf more general C fears, the inefficient and general loose terror of C as a whole, the less his diet concerned him. While it was of course not going to help, the occasional binge of brightly packaged snacks, the kind that the plastic crinkles so satisfyingly in your hand as your already oil slick and salted fingers clumsily try to tear them open, seemed a small ask given that such a lamentable fate was most surely set out for his ever nearing future. The Boy can now real off with an internalised index, splatterings of web journals and public hearsay, there is little to no proven evidence between dietary habits and the big L, so there’s no point in denying himself these brief and fleeting pleasures. His desires overcome the whole salt deal nuisance issue and he eventually helps himself to two albeit very bite-sized packs. Meanwhile, on the screen, his filmic counterpart’s immediate family are introduced, both in their capacity as fodder for tiresomely detailed by-the-hospital-bedside montages as their son’s raises yet another brave-but-fearful tear-inducing glance in medium close up direct to camera and in the torrid attempts at homeward bound emotional distress, seemingly always reaching boiling point when there’re in or by the pool located in the gardened exterior to their house. Arguments here rarely seem to occur in other places, their needlessly complicated accommodation, of which the Father would have an obviously more focused attention than the current viewer (our Boy suspects that their exuberant and lavish housing is allowed for us to cast aspersions upon their prior lifestyle pre-son’s C, as the camera too often lingers on the pool, the in-house bar or the suggestive wooden sauna door) is all but ignored unless it withholds a suitably decorative background to add to the on-screen nail biting trembling and suspended lower lips of forced to camera immediate worry and despair.
The secondary reasoning behind the boy’s negation of a carefully controlled and observant diet was that within his daily life, his excursions demanded greater fuel than he was ultimately providing them. He began to lose weight, appearing lethargic and often apathetic towards social interactions. He avoided going out with peer appropriate friends for massive bowls of noodles swimming in a soup of tiny chunks of fatty pork, doused with taste enforcing MSG, or joining the Father in one of their monthly family meals wherein he, the Father, would apologise for his absence, but only within the sober portion of the 1st course.
Nor was it the strained absence from all superfluous interaction that lead the Boy to skip recording the food journals, the notes and the charts, rather it was that they might factor in as a distraction, a smoke screen for greater trouble already residing within. As the Boy had noted within his first week of the early infant stages of his research, the many and varied symptoms, those like really all out in neon screaming signals, the telling signs of the big L were so often vague and difficult to detect or register as not to bother documenting. They could appear perfectly mundane, simple results of a less than healthy or perfectly conducted and coordinated life. Signs such as growing dyspnea or mild pallor the Boy came to worry might be overlooked as mere responses to his valiant and almost monk-like diet and that he or any tired doctor, as a fallible human technician, would simply account his appearance to a form of anaemia, which could be secretly cradling the speculative hand of the big L.
When his eating had become so minimal that the Boy suffered headaches and became routinely doubled over from severe muscle cramps, he eased up some on the overly restrictive diet. Yet it was the subtle expanse within the lymph node area that had lead the boy to demand from his parents that first of many hospital visits, refusing to leave the house or even get properly dressed until they had made the pre-booking call. Though now he vehemently states that he does not remember, he had in fact reached such levels of hysteria, that he had had to begin to regularly enforce a threat of burning down the apartment and had gone as far on one particularly panic stricken evening to ignite a pair of the Father’s favourite crimson silk curtains. They had taken aflame quicker than the Boy really expected them to and continued to drip into the vastly expanding flame, until the Father ran in and pushed his son with the open lighter away, ripping them down from the walls where he stamped upon them with possibly the worse choice of shoes, managing to destroy not only the remainder of the curtains, but also in the process, his favourite pair of American imported hemp sandals. Even before the flames had been fully extinguished, the Father of course had already ran through and mentally considered what could be done with the newly cleared space and after his son had been sufficiently disciplined for his callous but acutely perceptive actions against the poor choice of curtains, for as the father now noted had from the beginning been all-wrong from the colour scheme from the start, he set apart a late night session of drawing of the walls with a pencil, planning out prospective features and layered throw designs.
There is no immediate or neatly defining point as to when or where these ideas began, no ready genesis or point of intellectual gestation. Just that one day the Boy came to realise, as most do at some far later juncture, that he will die.
The Boy cuts through additional sections of the programme that deal with other families in possibly equal states of distress but not that specific topic of interest which the Boy feels might mirror his own developing condition. A thousand faces all multiplying the whitest teeth flash by him in an immediately forgettable succession. Although the documentary has only just begun, the Boy has already begun to consider not finishing it today, for he can recite every single line of dialogue, both from the C infected child and his insincerely mourning parents. The Boy does not like to consider or think about why the parents appear so insincere on screen. He found that the first time he seriously considered this for any significant period of time, his relations with his own parents became that much more additionally stressed, adding an additional layer of anxiety that the Boy just really didn’t need. He’s since found that it’s just easier to hate these specific parents, rather than trying to gain any possibly true but highly painful conclusions from their attitudes or apparent behaviour to their hairless and painfully thin child.
There is no immediate or neatly defining point as to when or where these ideas began, no ready genesis or point of intellectual gestation. Just that one day the Boy came to realise, as most do at some far later juncture, that he will die. Yet within the Boy’s specific case, he was also infinitely and severely palpably aware of how soon his departure would find him. How the arrival would be way before the late date that most people can able to sufficiently convince themselves of in order to aptly acclimatise to this eventual and crushing certainty. The Boy was perfectly resolute, in his bones and tissue much more than his mind or intellectual capacity, that the event would arrive before the later stages of puberty took hold, and most likely within the next two years.
It was perhaps because of this that the big L had taken such centre stage in his early research into childhood fatalities. Within his home in the upscale end of the city, many of the other valid and worthy contenders had come to early elimination. Malnutrition, contaminated water, hereditary blood infection or the lasting descending effects of chemical poisoning were just not as tangible to the Boy. And while the air contamination, a rich basket of polluted PM2.5 particles could indeed be seen as a significant and tangible threat, the Boy just saw all his present poisons as adding or supporting the rise of infant C, that they could not satisfy the boy’s tangible knowledge that death would be a pale and perfect childhood thing. He had scanned his families’ medical records and apart from minor trends in those heart problems of later life, of which he had all but placed upon a similar bend to heavy smoking, long hours and a propensity for alcoholism at expensive restaurants with people such as decorators and high end plastering executives, there was little to inherit. Though he saw the reflected pleasure in knowing quite early on the object and form of which your death will take, with each drink and cigarette a measure of control. But these findings offered little in the way of validation to his present uncertain situation, and of course this boy was raised in the age of C as perfect sister to the late afternoon True Movies channel showing of the terminally ill child, with that perfectly bold head and those angelically shaved eyebrows.
His first panic had involved checking the ridges of his hairline every morning and attempting to measure them clumsily with his school ruler. He then marked the distance from his other facial features in the back pages of his math’s textbook in a spare five minutes before his mother would take him on the underground to school. It was not until the research began had the boy realised that the hair loss, specifically the spectral doll-like loss of the eyebrows, was a result from the following chemotherapy and drug treatment rather than the disease itself, as he had thought not to ask anyone, feeling the question a little too stupid and obviously revealing. Upon his discovery, he had torn out the last ten pages from his textbook and burnt them, terrified that an all too invested dustbin man might for some reason discover them and in absolute disbelief at the stupidity and ignorance of the author, have shown them around the office, then finally pined them to the service station notice board directly next to the tatty and worn out sign-in sheet. The hair studies had long since gone the same way as the dietary requirements, as the Boy began stripping away everything but up to date doctrine and study, the viewing of recorded afternoon C films and the inevitable pleasure in knowing that there was little he could afford to do but wait, swing his feet carefree under the glass surface of the coffee level table which was still missing its collection of photographs and popular interest literature.
That at least one fifth of those who are soon to suffer are undiagnosed is not something that the boy spares little thought to. What is calm and breathable within him is the clarity of his rising illness. There are no spaces left for errors in the moments passing when he envisions hospital wards and the briefest flutter of white curtained sheets. He wonders if he will be upset when he is unable to stand. The thought of many pairs of arms having to lift him up out of bed and into a sparsely cushioned chair is at once an ugly reflection upon his growing return to infancy and a perfect clasping moment of pure love, of many other bodies leaning in with their warmth into his, supporting him, raising him and gently lowering him like a cared for and precious thing. The loss of his bowels and of semi-public defecation doesn’t trouble him. For this he is ready, it’s almost one of the side affects he is willing to embrace. A complete release of responsibility, of forcing himself through the daily acts while still pretending that there is anything decent just because a door of light pinewood is closed, a shabby lock of iron slipped into place. When he sits by his computer in these late nights, the open subscriptions running endless conflicting arguments, new causes and implementations, new treatments and possible remedies, he can almost feel the extremely low frequency waves warming him like the gentle glow of a heated fan, a radiated doughnut of orange flame, bristling up against his skin. The heated base of his laptop, of which he knows is due to its overuse he pictures as this, imagines it’s soft leaking into his skin, riding its way up through the tips of his fingers to his lungs and developing bones. That there is the swelling of a life but within and apart from his own, pulsating richly inside is something close to love. He feels the breathing of all appliances that surround him many of which he trusts, are helping him move steadily and inevitably along.
Acute was the first word that really drew him in. In its notions of easy drive and effortless success the word sounded beautiful and limitlessly stunning. Dreams of speed and dazzling light racing through electrical wiring replaced his boyhood nights of flying. Instead, he pictured microscopic symphonies of unimaginable complexity desiring to circumnavigate the labyrinthine corridors of his nervous system, to defiantly and callously turn his body into lumber. He dreamt of his spine as a vessel, penetrated and infused with rare toxic chemicals brushed with fantasy and unknowing flux. He stayed up late to watch online collections of filmed operations and transplanted procedures for relapsed patients and pictured himself as blind and subordinate to unexplainable and perfect oblivion. He considered what it would be like to feel nothing at all.
And it’s not a fear of dying. That’s never been any part of it. At the beginning the boy sat at the kitchen counter while his mother stood by the frosted living area bay window and considered as to whether he would be sad if she knew he was dying, and decided it was best not to tell her. Only when he had deemed the hospital visits a necessity had he stressed any inclination that anything might be wrong, and even then he kept his inquires brief and confused, forcing them to leave the room when he spoke to the doctor, demanding a specialist. The doctor wanted the family present, but after the curtains and the incident with the fire, both parents had decided to take a slightly more distanced position when their precocious child demanded personal space. The doctor had stressed that in order for an appointment to be made, the parents would have to be present, and it was at this point that the Boy’s research had become internalised to his own room and thoughts. Since then he has let no one interfere. The mother, now stubbing out a cigarette, would give her son a quick smile as she heads over to the sink. The Boy didn’t at any moment want her to feel any pain over this. He wishes that it could be as painless and as accepted for her as it is in his own mind, but he is notably aware that it won’t be. He’s worried that they’ll embarrass themselves in pointless fights and tantrums, just like the parents on the late afternoon True Movies channel C films, so at first he studied them just as intently, to work out how to help them reach mental and spiritual resolution in the course of ninety minutes, but the answer was never substantial and he rapidly became bored with the same orchestral swellings of their tearful yet accepting embraces. The Boy knows that he could not bring himself to suicide when the diagnostic is made. More to the point, for him to reach that pinnacle a specialist would have had to have entered, by which stage his parents will already know. This is why, the central crux, that all elements of possibility must be siphoned away. There can be no doubt in any conclusion, the boy must know before anyone else. His mother stays in her room now anyhow, which removed the push for these thoughts to enter. The Boy can now concentrate with far greater ease, upon the screen and the families tightly bound moments of quiet, restrained dignity.
With the AVI downloaded documentary almost finished, he washes off the last remaining grains of salt under the tap over the sink. While doing so, he thinks that it would be a good idea if he could get hold of some old bones, calf or any other small, domesticated farm animal. He’s aware that though their structures will be different to his own, still he thinks, that to run his fingers over and through the raw marrow, will be an enlightening experience and one that might help him to understand. His research was never one born from fear, hypochondria, or a need to grasp methods of prevention. He simply wants to be ready, to feel it and know it when it’s coming and to experience all of it in perfect beautiful objectivity. He wants to be aware of his accelerated deterioration, to know its shape and focus. The Boy does not want his illness to be something hidden or obscured. The idea that any drop of information may be kept from him throughout the process, in some naïve attempt to spare a young and fragile mind scares him. He wants to know, to really understand. To gauge the effects in difference between methotrexate and 6-mercaptopurine, to view asparaginase and cyclophosphamide as separate islands afloat a great sea of perpetual depth. To be able to recall the name prednisone as the Greek Goddess of which his mind first pictured when he spoke the name alone and silently to himself. As he dries his fingers on the underside of his shirt, he hears the latch to the first lock opening and the ringing of the Father’s voice, as he talks over his shoulder to whoever he’s had in company and brought back home to show the uneven levelling of the passageway from the hall up to the living area. With his bedroom door now closed, the computer remaining on, humming benevolently in the corner, he opens it on an article on genetic mutations in SPRED1 and early signs of predisposition, and the Boy is beautifully calm once more.