an odd child
‘behcet’s & asperger’s – for me a chicken and egg thing… inseparable now from the fabric of ‘me’… but i didn’t know what i really had, there was no name to it, until 1989 when i was diagnosed with ’suspected unconfirmed Behcet’s Syndrome… and much later in full adulthood when i met and practised music and art therapy with a classically autistic child when i realised i had some form of mild autism… turns out to be asperger’s… although i worked with preschoolers for 17 years of my life (and it was living hell for me), i don’t naturally like children, but i always had a special interest in ‘odd’ children and they were naturally drawn to me…
relating minefield
i had a quirky childhood… i was happy inside the world i had built for myself, but very unhappy when dragged ‘outside’… as a young child, i didn’t like playing with other kids my age… i found playground politics way too confusing and repulsive for me… i was confused by their rules, which seemed to keep changing, and i was repulsed by their childish low-level interests in things.. hence, kindergarten, primary and secondary school were various incarnations of hell and punishment… with behcet’s, social life was often unbearable… the physical pain exacerbated the mental and emotional torture… and vice versa…
as a young child, i was oblivious of my ‘handicap’ at relating, and merely wrote off other children my own age as immature, stupid, boring etc… but as a teenager, i began to wonder why i was so attractive to my fellow classmates in some areas (mainly where debates, art, music etc were involved) but seemed to elicit great antagonism in other areas (jealousy, incomprehension etc)… i remember being accosted and surrounded by a bunch of girls in the school corridor once, and subjected to nasty, bitchy criticism for half an hour before i was allowed to break free from this tyrannical circle of witches… this happened in primary school… and growing up in a household of girls, going to all-girls schools until i was 17, formed in me the impression that 99% of the female sex are evil conniving manipulative bitches… of course i know it is not true, for i hv had good friendships and one very supportive loyal younger sister, but still… it is hard to shake off the trauma…
teachers were the worst… most of them i viewed with intensely jaundiced eyes… they were stupid, crass, uncaring and boring… i never really learnt anything in school except pain and suffering – both physical and mental torture… i can only think of one supportive teacher in all those years in secondary school and one in junior college - and both were themselves ostracised mavericks anyway…
as a young adult, relationships with the opposite sex were great only in platonic situations… as soon as any kind of sexual tension / attraction came about, i fell apart in miserable miscomprehension, hurt, rejection and eventually withdrawal… in young middle age, sexuality was an issue… i am very tactile, sensuous and passionate, and i enjoy sex far more than women my age… but it gives men the wrong impression sometimes… or it just frightens them away… anyhow, relating intimately has been in general utterly confusing and frustrating to me… and perhaps also to the other party… my ex-boyfriends are mostly good friends now, and they love me far better after the break ups… i still receive daily inspirational emails from my first bf (we met at 17) even now… they look at me with adoring eyes which i never saw before when we were dating…
as for friendships, i always had trouble with girls / women… i never made friends actively, they just seemed to find me and ‘grab me’… and i get sucked into their orbits… i had a so-called ‘best friend’ for abt 27 years from childhood who i discovered in the end that i never liked… she was bossy, engulfing, twice my physical size, brash, crass, insensitive, aggressive, admiring of talent but herself very limited in depth and scope… i never could share my deeper intellect or artistry with her equally, and she began to mock me in the latter part of our relationship… but i didnt realise our complete incompatibility and inequality until she was gone from my life, and then i felt a sense of relief and release… the entire friendship seems to me a great blank – what a waste of time!… but it was easier for me to relate with platonic male friends… i also had a penchant for pple ‘on the fringe’… i was befriended by a whole bunch of gay boys in junior college (at 17 yrs) and some of them are still friends to this day… i am to this day the celebrated ‘fag hag’… and i love the label in a strange way… i guess pple ‘on the fringe’ have more patience and ability to accept differences, becos they too know the pain of ostracism and loneliness…
i am capable of giving a lot, i am loyal, faithful to the point of obtuse one-track mindedness, extremely loving and tactile, and far too generous – yes, i hv given out time, effort and much money that i cld ill afford myself to ppl who hv taken full advantage of my gullibility… i just could never ever figure out mind games, social games and sexual games… i am far too literal, always been… and that drove me and others crazy in various ways…
little professor?
my childhood was filled with obsessive interests… i was told by all the adults that i was very very bright… some even called me the ‘little professor’… but i never quite excelled in school or any structured limited learning… i did not do well in any kind of exams… and i know it was a disappointment to my parents…
i had crazy wide ranging interests and talents… i wanted to be a scientist, biologist, doctor, artist, writer, musician… and secretly, a dancer too, tho my physical illness made that dream one of which i was ashamed to tell… i loved my chemistry set and it is a wonder mom wasnt bothered abt me burning things or filling the backyard with horrible smells… i made waxed candles, experimented with lemons and energy, collected light bulbs, wires, amplifiers, and bits and bobs from dad’s discarded bits… i remember lighting a bulb from a lemon… making a little morse code signaler with dad’s unwanted electrical bits… i was a scavenger lurking around dad’s workroom and collected everything – including cardboard and metal boxes, egg cartons, glass bottles, pebbles, leaves, caterpillars, lizard and cockroach eggs, tadpoles, white mice, bits of plastic, twigs, driftwood and shells etc…
my language abilities were far above those of my peers, i cld read from the age of 4 and i made my own books, writing my own stories, poetry and illustrating them… for fun, i wld read the dictionary, i loved trivia and saved money to buy all kinds of books on facts and figures… i loved fantasy too, escaping into the house at pooh corner, moominland, detective stories etc… i wld ‘get into’ different characters everyday – i was zorro, might mouse, tigger, little my etc… but i didnt like to play fantasy with other children and i did not have imaginary friends… i was always really me in all these characters, in them i felt i cld express my own multi-dimensional personality…
i loved music, i cld play by ear almost any song i heard and liked, and i had perfect pitch, but i hated ABRSM piano exams, i got arthritis from playing scales and the repetition wld drive me crazy… needless to say i was a disappointment at these exams, scoring near perfect at the aural tests but miserably in every other section… i hated having to play the same pieces the entire year and i was often paired with a (in my opinion but not in public opinion) limited spoilt self-important older sister – she says i drove her crazy and gave her an inferiority complex in music, but i say she just sucked full stop… the poor creature, she has a pretty voice and for many years this was one area she cld be better than me in, but when i found my voice, she was overwhelmed with bitter jealousy (behcet’s in most part limited me here, i was crippled with painful ulcers and i never knew i cld sing until late adulthood)…
i loved art and doing things with my hands… every medium i cld explore was a delight to me… paint, pencil, clay, wood etc… two-dimensional visuals as well as sculpture, pottery etc… i had my own ‘installations’ everywhere in the home, much to the chagrin of our housekeepers… i was very tactile and loved to feel touch taste smell all the textures and chemicals in the plethora of art materials… i was not only fascinated by the visual element in art, i loved the physical acts of creation and imagination, as well as the materials and tools that made up the entire process… (i even tried making my own materials and tools rather than buying them ready made from shops)…
i loved swimming and was for awhile obsessed with this only form of physical exercise i cld manage pretty well… inside the water was another world open to me… the sounds were fascinating, i cld dream for hours in the pool surrounded by water… it was cool and i didnt hv to battle heat and humidity and the awful sticky feeling of perspiration… i hated ball games or ‘catching-throwing’ games of any kind – i just cld not catch anything thrown at me… i hated interactive games where i had to play with anyone else… i cld manage one other person – e.g. cluedo, backgammon, snakes and ladders, chinese checkers but i wld fail miserably at monopoly (tho i only enjoyed it once in awhile with family during festive occasions) and refused to take part in physical games with peers in school… i was happy to hv a medical excuse i.e. my behcet’s, so i wld sit it out in the shade with my books or drawings etc while the rest of the girls looked silly (to me) doing silly things with balls and sticks and bean bags…
i was encouraged to indulge in my vast array of interests until the time came to carve some kind of ‘career path’… that was when it all fell apart… of course there were signs that i missed completely, like when my parents berated me for not performing well in school to match my abilities, they said i was lazy… when dad refused to allow me art lessons (which was a good thing cos lessons at the time given by stupid limited teachers wld hv stifled me anyway) and in an awful rage, shouted to me “you cannot ever be a serious artist cos artist die poor!!!”… this scene is still vivid in my mind now, and it affected me seriously all my life… trouble seriously began at 18 when i aced art and english language for my A levels but refused to sit for the history and economics exams… then i fought my parents to allow me to study music and fine arts at university level… i fought my own body to graduate (again not as well as i should have)… but behcet’s played me out – i was dragged inexorably into 17 years of creative prison, teaching playschool in my sister’s private establishment, being paid handsomely (so much that i feared striking out as an artist on my own, tho i dreamt of it all this while), doing nothing with my vast talent but play piano, teach songs and art to preschoolers… until i finally got so ill from the vicious cycle of stress from deep unhappiness and lack of artistic fulfilment that i had to take time off from preschool for a year… i am forever grateful to the doctor who advised this… for during that year, despite great odds, i completed my first personal album of songs and i found that i could sing indeed!
now i am finally back on track and happy – alone but happy… i am at last beginning my journey as an artist, musician, poet, writer and all i want to be and do…
hyper sensitivity
oh and the hyper sensitivity… i can smell hear taste things that others dont seem to be able to… i can smell someone smoking a few apartments away… and when the neighbour two floors down brings home fish to clean and cook, it drives me crazy and i need to spray my apartment with anti-smell shit which itself smells to me!… i can hear the bus coming from afar, i hear from vibrations i pick up with all my senses not just the ears alone… my left eardrum was damaged at an auditorium by loud music, and it hurts terribly when pple clap or laugh at a certain decibel level and frequency… certain sounds drive me up the wall, and it was always a painful frustration when nobody else heard or smelled what i did… i was labelled ‘hyper imaginative’ and usually accused of inventing it all for some reason… but when it suited them, they used my hyper sensitivity for their benefit… my sister who cld not smell or taste wld use me as ‘food taster’ to test for rancidity – i cld tell the various stages of decay just from smelling the food, i usually didnt need to taste it!
i also suffer from extremely sensitive inner ear… nausea and vertigo – which is also a behcet’s symptom… as a child, i wld throw up constantly in the car… the family chauffeur hated me… and for many years i was extremely volatile inside a bus, taxi, boat, aeroplane… now, i still carry stamitil etc prochloperazine with me everywhere i go… just the other day i felt so ill in the ferry that as a result, i was nauseous all day…
hereditary?
my parents were creative people in their different ways… dad was the most influential in my creative growth… he was a multi-talented brilliant but self-absorbed man… i probably got my asperger’s from him… and in many ways i think he was a frustrated poly-artist… he was interested in a wide spectrum of things… he practised as a dental surgeon who hand made the dentures for his patients, he had a special lab at the back of his clinic, where i loved to visit and spend hours just observing him at work… there was also a piano in that back room lab, an old american honky tonk piano which i loved to play on… he loved music… i hv a part of his vast LP collection now, a dusty legacy from him… among other things… he was also passionate abt chinese literature, he learnt the classical language and read voraciously, and left behind a self-compiled dictionary of commonly used cantonese words with their corresponding phonetics… i promised him before he died that one day i will learn the language properly… he also painted, danced, planted orchids, cooked, fixed everything in the house (including laying the overhead electrical cables!) and in his latter life, made a lot of functional furniture… we had a large home with a long narrow garden… lots of space to create… he was my hero, and in many ways he inspired me, as i inherited a lot of his traits… but he was emotionally cold when relating to mom and us… although i spent most time with him, and everyone used to say i was his favorite kid, i never really felt loved or approved of… he was always critical and impatient… which made me the same of myself and others too…
as for mom, i cld not get along with her, and until recently, there was an unspoken antagonism between us… but she was quirky in her own way… i remember she got tired of disciplining me for my graffiti, so she gave me a wall of my own, by the telephone table, where i cld scribble all i wanted… and she was supportive of all my crazy obsessive hobbies… just as she was of dad’s… mom loved reading, and there was a wonderful library of classics… dickens, chesterton, twain etc… she also liked trashy romance, perhaps becos of her unfulfilled longing for love which she just never got from my cold distant dad… probably becos he was an aspie too… like his father before him… the signs were there, but wrong time wrong place for any kind of diagnosis then…
a wonderful life
a very fraught journey, yes, but it was not all horrible… i think the horrors were due to lack of awareness and understanding from others around me and for myself… now that i am more aware of both my physical and mental quirks, i am on the journey to greater fulfillment… and guess what? people who are different are also capable of so much much more! there’re many facets in a diamond, and even a diamond of the finest water has to go thru expert cutting and shaping before it can shine… this is true of any beauty, not just about Asperger’s… and regardless of the misunderstandings and what my detractors may think or say about me, i m beginning now at last to embrace who i m and all that i m with no self-condemnation… i hv been angry, ashamed and confused at my asperger’s for too long… time to be proud of being made this way…
