worlds upon words

Monday, October 28, 2024

Dad

Your hand, in mine

rough and dry,

comforting

always, warm

starting just

a little finger

switching sides —

left, then right —

traffic decides

my Sentinel,

Protector

shielding me from

vehicular chaos

but safe for

I hold on —

to more fingers

as I lose

my childhood years

—

four and half one

decades on

I have long

learned how:

to traverse

streets, roads

in cities of

all kinds

yet —

four years and seven

decades on

your fingers

comfort still

despite discomfort

of age and gout

they traverse

across two cities

and years apart

to mine, secure

comforting me —

like I was four again

and safe.

Labels: words

Monday, October 07, 2024

unwrite

𝟙

unwrite

𝐌y online-pen has been gripped by silence, because I am not quite sure where and how to write anymore. I feel a sense of ADHD-disorganisation in my mind about where I place my words, because I can't seem to land on a perfected tableau anywhere. I seize up, unable to write as I intend, like an office printer jammed by too many requests and/or unsuitable paper grammage. The words fall nowhere and I resorb them within me, unformed.

This blog, worlds upon words, is only one part of my soul. Twenty years on, I feel that I have become more than the specific persona who authors worlds upon words. Like creating of multiple business units within an organisation, I need to create other spaces to publish the written word, in distinctive forms to accomplish different aims, each space of a distinct brand profile and even author persona.

I also need to renovate this blog, and then incorporate it, alongside new ones, into the brand or persona that fits me now, two decades on. My being a generalist versus a specialist means that I cannot just be one brand or one product; much like an FMCG business. But it is more work than I know how to do or able to get done. Until I can do all of this renovating, reorganising and incorporating that I seem to find so necessary, I feel my words have nowhere at all to land, thus they never get created in their written form anywhere. I need to finish laying down the foundations of my web design to establish this — and I already have the design template in mind — but I don't know how to build a website and the supposedly useful, even paid, website builder services were all unhelpful for my design brief.

So, really, it is the tableau for writing online that I can't seem to find anymore, that has jammed the imprinting of words completely. It is much like how some people can't use the public bathroom because it is not quite right in some detail or another, and they hold it in till they get out (hopefully in time).

𝟚

stage/canvas

𝐃uring my teens, for only a year or two, I was a productive student (which was more anomalous blip than general trend). Like the setting of a theatre stage with lighting, props and suchlike for a performance, I could perform my studious tasks better when I set the stage that was my workspace: I made sure only my desk light was switched on, making every other part of the bedroom darker, thus forcing the eye to only focus on my work in front of me. The audio component was the radio: tuned into the Perfect 10, the pop music station of my adolescence, and a radio station that was 24-hours (a rather new phenomenon back then) which supplied perpetual BGM. Sometimes I did play my cassette tapes, but I didn't have very many of them, and you couldn't play them on a loop long enough to last the hours of studying, uninterrupted.

In the same way, I tried to recreate the visual space that looks like this blog's 'compose' screen, by formatting the digital notebook app I favour (when I opt for digital over analog writing). But the resulting creative endeavours led me towards infrequent, incomplete pieces of writing: inertia, instead of impetus.

The process that should follow painting is that of displaying, showing or exhibiting (or gifting and donating) that finished artwork. If no one aside from its creator is going to lay eyes on the finished work, there is far less impetus for the artist to make a good work of art. By designing a notebook to set the stage equivalent to my blogger 'compose' screen, I was just priming the canvas for painting only, without envisioning the exhibition of the resulting artwork to others than my own self as part of the process. If I was setting a stage, I was endeavouring to perform onstage: but, to no one, thus negating the need for many of the stage components: lighting, for instance. Performing to no audience is thus an oxymoron.

(Not to imply that the eventual audience ought to dictate the way the artist should create.)

The stage was set, but there was no audience. I stretched and primed the canvas as my stage; but there was no tableau.

𝟛

tableau

𝐓he ego, the sense of self of the writer or artist, has to be of a healthy size. The creator should crave some form of transcendence beyond the moment the work is created, beyond being the first person who gets to enjoy the work. Writers want to write and be published because we supposedly want our words to live on beyond us, outliving our own mortality and perhaps forever ('as in, "the internet is forever"). We think eternity deserves us. We want to be read; we want our art to be experienced by an audience.

Even for practical non-artists — managers, policymakers, historians and suchlike, who write plans, papers, and articles to perform an essential function — this holds true, innit?

The concept of –you– the reader of my written words posted here, has always been more abstract than real to me. It is like that imagined future person who will open our time capsule many years or decades later. Even in early blogospheric times that preceded social media — and back then I actually did do my commenting admin — when I was, or became, real-life friends with the people who read me here, I still wrote for a conceptual audience in my mind.

But — and herein lies the component that transforms a stage into a tableau — in the 'compose' screen, there was a 'publish' button. Like the ones we see on our social media apps. My notebook, however on point my design was, was offline and did not include this button. Theoretically there was no conceptual someone in my mind who would read this.

𝟜

perform/publish

𝐖riters want our words to eventually be in a vehicle transporting our ideas — somewhere, to someone. Through exhibiting our artworks in a show or at a gallery, or simply by displaying them on our own walls, the painting we create, the words we write, the art we make —transcend ourselves and the moment it was created. It transports our art from the studio to the gallery; our performance from rehearsal space to the theatre; our words from a screen, or page, to the readers. Our art then transcends beyond artist, time, and space.

Writing without publishing is like merely sitting in a vehicle but not making a journey to a specific destination for a specific purpose; it is like taking a drive for the sake of it. The journey becomes the means and the end in itself. But in general, you acquire a vehicle and use it largely for the practical purposes of getting to and from destinations, and for getting something done. The ability to have a joyride car drive to nowhere is usually just a bonus that comes with car ownership.

Your car, or bicycle, or any mode of personal transport, eventually becomes an extension of you, and visually it becomes a space intentionally curated in your own image, or naturally reflective of your personality. But whatever the case, your vehicle will be visible to other people, out in the world. It isn't like one's bedroom, locked drawer, or digital password-protected files and folders: spaces which might never be seen by eyes other than your own.

Likewise, publishing, even in its weakest forms — through blog posts like this, for instance — is the vehicle used to reach another reader that isn't myself. Writing in journals and digital notes doesn't achieve what publishing does. Not that the personal diary or journal are unimportant, but that they merely achieve other aims: allowing our subconscious to firm up ideas, feelings; organising thoughts and creating plans; recording minutiae that you may need to refer to again at a later time; or writing for the sake of the process in itself — like how that quiet car drive or bike ride on the road to nowhere, no one, for nothing, standalone as experientially curative journeys.

This audience may be but a philosophical concept to me when it comes to my writing on this specific blog, in varying degrees of abstraction over the two decades I've written on this blog, a construct rather than a corporeal form, but it exists as a persona outside myself when I do post my writing online. Thus it becomes impetus for me to create for somebody that isn't me —

— which brings me back to how I have been figuratively resorbing my words lately. The abstract or real person who will figuratively or actually read my online-published words — imagined or real — gives me the impetus to create, create completely, create more, and create better works in the written word, a realised vision to be seen by others.

I have not been using such a stage as this 'compose' screen, this primed canvas, that has a very real button to publish my words. Right now I am back here, because I kept on looking for the right space to lay my words down, and stop them from disappearing into nothing, never-formed, inside my head and heart. For now I disregard the fact that I haven't finished rebuilding my website that will consolidate the new spaces I need to create for other kinds of content I need to create. I will try to ignore the fact that I haven't been able to renovate this website completely, no matter how compulsively perfectionist I tend to be.

𝟝

self

𝐈 mentioned the writer or artist needing an ego to create work that would be seen, experienced, even admired, by others. Too much ego does lead the artist in arrogance or even eventual mediocrity. But without enough esteem for the self as an artist, there is inadequate desire to transcend themselves, the stage, or the page. Therein lies another problem:

I live with perpetual passive suicidal ideation, and I do not care if I die, if I never achieve what I wanted to in this world. For the first eight years of my depression getting medically diagnosed, when I fell into another depressive episode, one that would eventually be lifelong: I was more than passively suicidal. For those eight years I think I tried to kill myself at least once every year. In the following eight years, up to the present, I have no longer been actively suicidal. I still have chronic suicidality, which I think will never go away, but it has been eight years of inactive suicidal ideation; I won't do anything to end my life, but I die from another illness or by accident, so be it. There would be another, I am replaceable. It is like my ego hardly exists, and my body as receptacle is like a lighter, and it is trying to spark aflame, but having mere fumes and tiny drops of lighter fluid left in the barrel. The lighter fluid well that is my sense of self, should be filled. But I really don't think of myself as necessary. This is why I don't have a bucket list of exciting to-dos. If I die today, I don't feel any regret.

I am not so important that my art, words, and service need to exist for others to experience them. Any other person can serve people and help animals, any other person can create art, write literature, and perform music. Go buy another lighter and dispose of this empty one that is me.

I have mere droplets of self-esteem. I don't have enough desire to transcend my art beyond myself. I did once think about becoming a published writer, and I have a rough-draft in-my-head proposal for my magnum opus, but if it doesn't come to fruition, it doesn't feel like a depressing regret inside me, I don't believe it is the world's loss.

I have enough droplets and fumes of lighter-fluid-ego to post a blog post for now. It needs to spark and light aflame to enable me to write as avalon would on this specific blog. The way I write here, the kind of prose and poetry that I create here, requires a process that is hard to replicate in my offline notebooks, digital or analog. Here—the habit has formed, the process crystallised, the brand created; for two decades I have been doing this on worlds upon words. Since I don't actually believe this piece if writing will get read, to me, you the reader are just an abstract construct in my mind; and so I have just enough ego fumes in the barrel to get me to 'compose' and hit the 'publish' button without too much care. I just need this space to lay down my words and stop their unborn selves from being resorbed before existence on a page. The perpetual resorption is an uncomfortable process.

𝟞

vessel

𝐑ecently, the state ofmy perpetually empty self-esteem tank has surfaced in my relationship with my God. Through his words and his Spirit, I have been told emphatically that I am worth something to him, and I am still alive for a specific reason, for work he wants me to accomplish on earth. I was nudged thus: if God says so, that I have worth, who am I to challenge that fact? To not believe this would be irreverent, like throwing sand and soil at monks and priests carrying bowls, asking for alms: an act of irreverence and disrespect. Even if the monks and priests do not share your specific stances on faith and spirituality, you wouldn't show that kind of disrespect as a reasonable, decent human being.

I might be a broken clay jar, but I am a jar that contains treasure that is not my own. God has a purpose for this broken vessel, still. I don't see how I can eventually and sooner than later get back to doing the work He has called me to, because I am literally disabled right now. Yet, I cannot merely press on, like I have been doing in my recovery journey, so that I can get back to my work; my perseverance needs to be tempered with a sense of self-worth.

Which means I have to work on that objective — of coming to believe in myself and to start esteeming myself more — in this, my unending, spiritual and my recovery journey. Maybe it is the missing ingredient I need to gain more progress in my recovery.

𝟟

avarecs: avalon recovers

𝐁ecause right now, I feel I am back in late 2022 once more: I am not eating much, I can't get myself to make two meals a day, essential meals that complete the profile of nutritional needs one needs per day. i have resorted to ordering food because I can't get myself to make my own food. Without calories I get very dizzy and being alone and disabled, that is really dangerous and unsafe for me: if I blackout, I might very likely die without a single person knowing until it is too late. I don't live with a family anymore and I don't have friends who would knock on my door to check on me, like TV and movie characters seem to have, a protrayal or friendship as unrealistic as rom-com love stories.

I just placed a new grocery order of mainly fluids so that I can ingest via liquids: protein, vegetables, fruits, probiotics. I ordered more snacks like nut mixes that help me with fibre, and I bought pears to enjoy daily as a snack I like as well: I am still able to get myself to eat snacks. So, I also procured (an unhealthy snack, by contrast) more of my favourite vegetable chips as easy and tasty calories. I can't use the vegetables in the fridge anymore because I haven't been able to get myself to cook for so long that they have wilted. And I did not buy any more fresh vegetables, because I don't think I can yet bounce back to being able to feed myself dinners properly again; not yet, anyway. I do have bread as one form of solid food, and I find it easier to make a teatime meal of eggs, coffee and sandwiches, than a dinner meal of fried rice and vegetables. Eggs as well as almond butter and almonds in the nut mixes I snack on for fibre, and almond and soy milk, help fulfill the essential need for adequate daily protein: important for both depression and ADHD. It also helps keep my diet alkaline, in order not to trigger gastritis or dyspepsia attacks. This is my better-than-nothing plan, a solution so easily executed because I have been here before.

And this week I am alreadly scheduled for one consult with one of my psychiatrists, and for a psychodynamic therapy session with another one of psychiatrists; it is on my agenda to work on this with both of them. I haven't lost the grit and perseverance to successfully recover towards adequate functionality; I am too absent of success in my recovery journey, apart from infrequent dribs and drabs that are too little, too slow.

So, I have to value myself and believe in my worth, perhaps, to move as successful recovery journeys do: ongoing two-steps-forward one-step-back, instead of of the correct one-step-forward and two-steps-back progress rate that represents successful recovery and rehabilitation. With the inverse trajectory I seem to keep experiencing, never-ready enough yet to go back and join my work-family and relieve my volunteer leaders, I am helplessly and involuntarily watching time pass, and seeing myself unhealed. Trying to value myself, ascribe worth to myself, to add myself as as one of the persons I stay alive for, besides my two parents (I used to have three persons to stay alive for, but one — Sayang, my cat best friend for 14 years — died last year). This is a radical thing for me: like forcing the existence of God onto an atheist and force-feeding them to accept it, or like how stomachs get pumped when a patient overdoses or ingests poison.

Believing that avalon is important and essential and has still yet meaningful art, service; light and love, work that the world needs or deserves – from me! –requires a lot of work on my my part. Theoretically, I get it, but it is too far out for me to fully accept as reality and truth. Not that I won't try to make myself believe, just that I am simply an empty tank right now. I have to bring myself to at least a level equal to how I am able to visualise an abstract concept of a reader in order to complete a piece of writing (a bare minimum of completion, at the very least), and hit 'publish' like I have done so, often. Not caring about all the visual untidiness of this blog, or about the incompletion and disorganisation I feel my web persona or personal brand is in right now. Perhaps only one or three people, actual people, will see this post and read it. Less still would someone come to my aid after reading this. But I still have to visualise a reader to write. Perhaps I need to visualise this worth and value, esteem for myself that I have to believe and below upon myself, in order to recover more quickly, and get back to the helm of my organisation. Instead of frustration at my slow rate of recovery, perhaps I should channel my energy towards visualising self-worth. Whether I will succeed, is unknown.

Labels: state, status, words

Friday, May 17, 2024

shooby-doo-ing

I am almost always not doing something I should be doing. It's a refrain I hear playing ad nauseum in my mind's ears that it almost has become a catchy barbershop-quartet earworm. I should be doing this. I should be doing that. I also shooby-doo-ing something to fix my inability to work on those things, or at least start working on them. My solution however entails a doctor's consultation and medications that my parents and I can't afford right now. The mobius strip strikes again. No money to continue to recover, no recovery progress means no money in the pipeline.

Labels: state, status

Monday, February 19, 2024

Saturday, February 17, 2024

🆘 I need help

My ex is still holding my money hostage, returning me my share of my flat sale proceeds in small sums which he has been decreasing every month. Last month it was $700+, this month it is $200+. I cannot pay for my basic needs this way.

I believe this may be part of a strategy to force me out of the flat somehow so he can occupy my room if he succeeds. Perhaps in his mind I will do so (1) by suicide; or (2) by moving to JB where my parents are, even though it is (a) not suitable for my physical disability due to a flight of stairs, (b) there are no spare rooms because the rooms are occupied by tenants that provide rental income to my parents, (c) I'll have no way of commuting to and from CGH where I receive my medical care; (d) I will likewise be cut-off from social contact I am already trying to increase as another recovery goal, or (3) by moving to a charitable institution for the homeless — a situation which would stress me out greatly and make me feel unsafe even if I can qualify for such a place.

I also do not have any other family than my parents. But moving out of SG will also affect my other recovery KPIs, such as those centred around social + music events that I have recently included in my recovery goals. I certainly will not opt to die because I still have reasons to stay alive, primarily my parents, and my furkids. I do not want to be apart from Scooter, Splotch, and Scotty. With Scotty, having a dog to take on walks every few days helps as it is also part of my personal recovery strategy. Any financial, housing or food insecurity will trash all my recovery progress over the past 15 months.

A symptom domain I have is stress intolerance. When I try to do anything besides my recovery e.g. fundraising, income generation — the stress from trying to do things I am not well enough yet to do, nor can I do alone, nor do I have practial help to do — has always affected my recovery KPIs. Even this matter has affected my recovery KPIs for the self-care activity of daily living (ADL) of feeding self a nutritionally balanced meal daily. I simply lost my appetite. Without it I have little motivation to feed myself properly, because motivation is one of the factors affected in the ADHD brain.

One thing I know for sure: The only thing I can currently concentrate on now is my recovery. It is the only thing I've been able to improve on so far, nothing else. So for now, I really need your help.

What+How:

(1) bank deposits or transfers to my bank account DBS savings 027-906860-7; or via PayNow and Paylah (via my tel no. 9 088 0 67 5). These gifts will go towards expenses such as food, groceries, transport, my ADHD doctor consults and medication

(2) giftcards on Lazada using my email and mobile number (avalon.apart@gmail.com, 9 088 0 67 5). These will go towards my groceries only, which I purchase via Redmart on Lazada. I do not order anything else online via Lazada.

(3) practical help — this is a long-term What+How, so it will need better explanation than I can include here. Please DM me on Twitter or IG to ask me what practical help I can do with most urgently.

Thank you for reading and sharing this SOS appeal.

P.S. I mention my recovery strategy a lot, because I have structured and worked on it somewhat like a business proposal. If you are keen on looking at my personal recovery strategy, I can organise it into a document and send you a copy, if you are keen on investing in my recovery over the long-term.

P.P.S. I will soon be detracted again from my recovery as I start my divorce proceedings, which my ex and I initially agreed to start after he returned me all of this Ubi flat sale money (my share of it, which my mom asked him to keep for me when we were still married and he managed the finances). Thus there would only be one flat to litigate in the divorce which is the one we cutrently own and live in. This process will truly be stressful and I may really backslide in whatever recovery progress I have made these past 15 months. My emotional regulation is much better now than it was, say, one year earlier. This will hopefully keep me afloat during this trying process to come.

Wednesday, September 20, 2023

that 24 things meme +

I kept on seeing this meme everywhere, and I thought, this is too troublesome. Anyway, nobody tagged me to do it. But then I enjoyed reading everyone's, and thought, I should try it after all lah.

24 weird facts/things/habits about elaine.

I cannot stand it when the floor towels are in a mess heap. They should be neatly laid, all the time, even after you step on them to wipe your feet.
Ditto about the sink, the surrounding area must be dry, never mind the looming decomposing dish-heap within it.
I like to read cheem things like classics and business/history/art/non-fiction/non-bestsellers, but also alongside the seemingly unintelligent chick-lit and magazines, which as long as they are actually also secretly intelligent, I secretly enjoy more than the academic stuff.
I like laptop keyboards more than desktops', and I like laptop mice more than the external kind.
Otherwise I actually need wrist-rests when using a desktop keyboard and mouse.
I sleep with five pillows, and no bolsters.
I make silly mistakes with other men after I have been dumped. Twice.
I used to like this girl in school, who has since turned into a boy. Actually I think so have the other girls, somewhat.
I was not artistic till my later years, it is not true that art must be developed only as a child.
When I used to stay with my parents a lot more, I would go into my roomwhen I reached home, to rest and hide for a long time, before coming out to make the conversation for the day. Not all women will start talking immediately from living room to kitchen upon reaching home, as some believe. I am a Martian cave-girl.
I only started to enjoy Archie comics when I grew up, like in my teens. I still do, just that I have stopped buying them in recent adult years.
I talk loudly, and so do my parents, in fact we could have conversations with doors and storeys in between us.
This week, on separate occasions, both Calvin's mom and my mom have asked us individually for the first time, when we are getting married. It actually sounds better coming from them than from well-meaning but over-enthusiastic friends.
I already have a flat, in mine and my parents' names. I think the fact that I am so used to staying alone, and the fact also that I actually stay alone even, is weird to others.
I have never had a pager. This is weird for many people my age.
I only started IRC and the like, somewhere in 2000! I was already in uni.
My mental sums suck but I teach maths to secondary school students rather well. I have been doing so since 1997.
My specs have a degree only for my left-eye, and the other is perfect. My left eye is both long-sighted and astigmatic.
I don't watch tv unless I am sick, depressed, or unwell, and need to do something unintelligent. And if I do I don't watch anything Chinese or Korean etc., I cannot take it.
I have developed this habit since I moved to this flat, of only opening the letter box once a week or so, because the box is located away from my stairs, in another wing of the block. Anyway, I don't like to read mail - what is the point unless I have money to pay them bills?
I only pay bills when I have both money and time, not when they are due, because that is simply not possible.
I no longer wear a watch, haven't been for years. I will get paint on it anyway.
I have not had a stupid POSB account for almost ten years, and I will not even try.
There are years in my life that went by without me remembering anything much. They disappeared and I can no longer recall them. They were perhaps around 1999, somewhere. I now see it as the onslaught of depression, only I didn't know it then, till I hit me full-blown in around 2000-2001. I think.
I have no brothers and sisters, and I am very glad I don't have to share my parents' love.
(Oh, I am done! with the 24 things. I could actually go on, that is how mad and inane I am):
I had mood swings even as a kid: There was one day I avoided my friends who usually came over to my house to play together. I was about five or six years old. I would lock them out, and ignore them as they knocked on my door asking me to let them in. I went into a daze, and simply pretended they weren't there.
I have a weird scar on my left hand, resultant from scraping a corner of a wall in JC, whilst I was running around from point A to B. Yes, kids run, yes, I grew up late.
I hate learning anything hands-on through formal lessons. I learnt the keyboard and guitar through watching, emulating and playing with other people. I quit playing the organ through my organ teacher when I was eleven (I started when I was about four or five), citing stress as the reason.
I hate relatives, and all manner of extended family gatherings.
My ah-ma is probably Peranakan, she wears a sarong kebaya and used to make nonya kueh, and they all speak Penang-Hokkien and Malay on that side of the family, even though we are actually Teochew.
I don't have a driving license. The only time I took my basic theory exam, I failed. Needless to say, I hardly studied, and those years were the ones they reduced the percentile of people actually passing. It was 2001. Hah.
My psycho-motor skills are terrible. But my peripheral vision is excellent. Should I still learn to drive when I finally have the money to?
I hate small cars, especially the Malaysian Kancil, the Nissan March, the Subaru Viki. They should all disintegrate and cease to exist, with their drivers and their stuffed toys too.
I don't eat artificially coloured or (when I can) flavoured food because of my eczema, and I don't eat dairy because of my gastric problem.
I like potatoes.
I like beer.
My personal casette tape collection from the early 1990s includes: the Pretty Woman soundtrack, Roxette, and Def Leppard.
I meow at cats when I am passing, something which H used to scold me about, saying that if I kept meowing at them they will follow me after all, which by then I will proceed to shoo them away, so what is the point? Now I just meow at Slinky the cat downstairs.
I still talk about my dog as if she still exists. Dog has been gone almost ten years. I have known her since 1993. She is a brown mongrel. I like mongrels.
I was only photogenic when I was about sixteen to nineteen years of age. Okay, perhaps actually for a smaller margin of years.
I used to write my poetry on scrap paper and envelopes, before the days of blogs and the proliferation of typewritten handwriting. I still have them.

Okay, now I am really done. 24 turned 42 meme. Hope this was entertaining for you too.

Labels: trivia

Friday, August 11, 2023

Regression

If I don't write in words the insides of my mind, I will burst.

I told my doctor I felt I was stuck in the infant stage: I can hardly take care of my own needs, so that is accurate. Trying to do anything besides what a baby does, that is, simply exist, is impossible — except for reading, writing, watching tv. I suppose I am actually stuck in the toddler stage. My earliest memory dates from age 4, and I feel around that age right now. I spent a lot of time alone at that age, and I am doing the same right now.

One difference is, I am not lonely now because I have have Sayang and my other furkids; this would have saved me from a broken heart at that age, a breaking that I didn't even know was happening, or what it was, or how to verbalise it.

Right now the insides of me are still unresolved because until I can go back into my infant-toddler stage and break the trauma loop, I will remain stuck here as an adult, and never recover enough to be the functional person I used to be and go back to doing work that I want to do.

Labels: state, status

Thursday, August 03, 2023

self check: my hobbies and interests

I confess: I am a very boring person.

My hobbies and interests are pursued as long as I can afford them, and I am honestly rather poor. Therefore, it means that the things I do nowadays, are only the affordable favourite activities.

There are tons of things that I enjoy, or would love to do, but as of now, I cannot afford to do much of.

I love travelling. I love Asia, Irwin says I will love Europe, I want to go to as many art museums and places of history that I can in the entire world. To me, stepping into a place like an ancient mosque in Tashkent, Uzbekistan, was something I am till this day, impressed by - a piece of history that I carry with me always. I remember the point where I realised I stood right at the street where the Silk Road passed through - stopped my breath for a half-count. I love art so much that I will never forget the Queensland Art Museum in Brisbane - I almost forgot I went there alone. But these are things that, sorry to say, I do not always have the luxury of spare cash or spare time to do. And even with travelling, I only enjoy certain things more than others, for example I found Gold Coast only a passable place, and the only thing I really, really loved there, was the beer, which is available throughout Australia. So I am poor as well as rather troublesome: I only like to travel for art and history and culture, and for taking in God's creations like mountains and horizons of fields, not for the typical urban entertainment types meant to attract tourists.

I would love to learn sailing. The type of sport that I like to do, which isn't very many to begin with, are the types that allow contemplation and intimacy of sorts. (Obviously, I am doing these physical activities for the wrong reasons). I like cycling. It helps me think, enjoy my surroundings. I like swimming, it helps me de-stress and feel good. I like walks, if with another, walks allow me to link hands with someone and have intimate conversation.

I love conversation, and about things that alter history, the intimate things. I will remember the places where I had the best conversations with people. I remember the benches in the garden of SAM, where H and I talked about our shared goals and visions. I remember O'Briens in Citilink, where Shuyi and I had the first long conversation with each other after work one night, and that started our friendship.

I love music and most things related to it. I enjoy playing it, with or without others. I enjoy seeing people play it, thus I like going for gigs and live band performances. I enjoy going clubbing mainly because of the music.

I love art, which is why I love my work. And not just art-art, but also the performing arts, film, and design. I love them all. I like experiencing them all.

I like shopping! Because I am a girl, because I love fashion, it is to me, art as well. When I hated my job, dressing up for work was my main motivation to go to work, and make up too. But, now because I am poor, I obviously do not shop very much. I am also not the sort who plans to go shopping, it is more likely to be an impromptu thing that occurs.

It is silly to say this, but I also enjoy all the base-level existential thngs that fulfills our primary physiological needs. I know that some people do not really, but I do love all of them: sleep food sex drink. In copious amounts, please.

And, I love books and writing. Words are ultimately my first loves. When I stop writing, I stop thinking. And I cannot stop reading. I am an addict.

Labels: me

Saturday, July 22, 2023

The Art of Making Possible — Nancy Scheibner

Credit to the blogger Middle School Poetry 180

— with much gratitude from yours truly, because I couldn't find my own copy of this poem. The last four lines of this poem were written on the living room wall of my old flat, but I am sure I also blogged this quote before. The author's first name and the exact spelling of their last name was almost entirely out of reach of my google-kongfu even when I searched in my own bloody blogposts. Rest assured I am going to save this more permanently. The last five lines of this poem have inspired my yearning to always do meaningful work. I hope this poem inspires you in a similar way. Enjoy.

My entrance into the world of so-calledgr “social problems”
Must be with quiet laughter, or not at all.
The hollow men of anger and bitterness
The bountiful ladies of righteous degradation
All must be left to a bygone age.
And the purpose of history is to provide a receptacle
For all those myths and oddments
Which oddly we have acquired
And from which we would become unburdened
To create a newer world
To translate the future into the past.
We have no need of false revolutions
In a world where categories tend to tyrannize our minds
And hang our wills up on narrow pegs.
It is well at every given moment to seek the limits in our lives.
And once those limits are understood
To understand that limitations no longer exist.
Earth could be fair. And you and I must be free
Not to save the world in a glorious crusade
Not to kill ourselves with a nameless gnawing pain
But to practice with all the skill of our being
The art of making possible.

Labels: share, state

Saturday, June 10, 2023

I need to write words words words because I feel like fuck and no words to describe that feeling thus words words words words are all I have now. So what do I say here now? I am not looking to craft art with words, just respite from this feeling of no words. The feeling has too many question marks as a facet of its constitution, so I am left speechless.

Wednesday, May 17, 2023

Avalon and Sayang etc.

Avalon and Sayang status update: longform complete version is on blog takingavalonapart.blogspot.com [link in bio]

Had an awful night of ill sleep yesterday night. I knew I was physically tossing and turning repeatedly and rapidly, when usually my disability means I tend to sleep in the same position all night. I even jumped out from bed in the middle of the night: I was having a nightmare but in that state of being neither a sleep or awake fully. I was worrying about Sayang.

The sleeplessness was not only over Sayang but it was one element of my waking nightmare, which made me get up to go grab Sayang from the dining area and bring her to the bedroom. I have been worrying about her.

Her "old-age" coughing has started to sound wheezy, and too much fun activity will leave her a little too tired. I have to monitor her vigilantly for now, but I need to get her to the vet sooner than later before the emergency happens and she ends up needing an inhaler, etc. but I dont have one on standby.

Since moving back to our Macpherson home, she has lost some weight, because I can't control the way her father feeds the furkids in the day, no matter how many times I typed out why and what Sayang's nutrition, allergies and eating habits are. Not only is she eating less now, her allergic reactions aren't going away, and it is even possibly related to her wheezy coughs getting worse. It was in changing household cleaning agents for my own ezcema that helped me get rid of Sayang's contact allergic reactions. But i still had to maintain her on a low allergen diet (cats have allergies usually to fish and seafood but too many brands use that as protein source, or at least for essential fatry acids like salmon oil. But the latter would be in microsize portions at least.

Even before I moved back to my flat with Sayang, I texted her father with instructions and explanations not just about Sayang's nutritional needs but also those on the use of hypoallergenic household cleaning products (ecover zero) I have bought, that helped completely wipe out her contact allergies when she lived with me. This contact allergen requests were repeatedly texted to their father after I moved in. But are not replied, even though I am always extra careful to word these texts objectively so as to not hurt his feelings and I have placed so many bottles of ecover zero multi-purpose cleaner around the house to help him with the change. I still see the wrong food in the bowls. I told Sayang that her dad will not believe me, so she should show him IRL how itchy and scratchy and thus how annoyed she feels about being itchy.

This co-parenting nightmare before also applies to the other kids. Scooter was supposed to be only eating wet food because of his urinary and kidney health, not just his age. But whilst I was unable to live with them, his father changed both his and Splotch's diet to a completely dry one. I was horrified to find this out: Scooter has had kidney failure before and tends to have urinary problems that affect the kidneys like that time we nearly lost him. The conversion to 100% wet food for Scooter was not a tentative whim and fancy. But again when I text him, objectively, about the kids' nutrition and health i am ignored, unless he can find something to weaponise blame on me or proof that I am not speaking fact. It makes no sense to any loving cat parent, not just to me, right? I don't have enough money to pay for all of them to get back on a balanced and needs-specific diet. I have paid for their canned food on my own so far, as well as cut Sayang's portion down to give some to her brother and sister: because when I asked their father to share the cost, he does not answer. I will just have to order and feed them myself for their nighttime meals to make up for what their father feeds or does not want to feed for their breakfasts. I just do my best and remain objective. Communicate the needs and see what he does or doesn't reply. Tell him thank you for telling me something important and in a timely fashion, and correct myself when objectively it makes sense.

When I say I need his help to pay for the vet expenses for Sayang (and her siblings) explaining why, based on symptoms I've been vigilant about monitoring? No reply from him telling me he will cover her vet fees.

It is highly likely that my next fundraising need that I post here is for Sayang. Thus I will keep being in a stress mode state of ill-health.

Furthermore this is about Sayang, The Original Therapy Cat ™️who inspired and pioneered our Outreach programme. She is the LKP mascot and her face is on our poster at events and on other corporate paraphernalia. She may be 13-ish years old but even stray cats with a hard life have survived for longer.

I told Sayang, who often understands what I say (evidence of her understanding what I say is through her following up with specific replies or responses through her species-specific behaviour) that after I settle my own medication costs this week, I will raise money for her and get her to the vet asap.

In the meantime I told ber needed her to do a couple of things. First, I told her she has to remain strong. Don't let 妹妹 ie Splotch challenge her leadership status and get away with that. Secondly, I needed her to come and show me her coughing, so I can monitor her, because she isnt always by my side. She often hangs out in the communal area of our home, as part of her leadership duties. Sayang responded to both my instructions. Literally right after I told her to be strong and maintain her authority, Splotch did a playful-looking half-body pounce and "hug" on Sayang. Sayang responded with both physical and verbal language saying she is still (well enough to be) the alpha-bosscat head of the family. Then she came to look for me more often, so I can do the vigilant monitoring. I did also say she needs to communicate to me any discomfort and she has been doing so as well. Observing and remembering minute details is helpful in this case.

I wish i could just go and beg on the streets to get help for her.

That's the longread version of my update for today. Thank you, friends and strangers.

Monday, December 26, 2022

my safe space

Sometimes this small rectangular space on my screen is the safest place in the world for my existence. A piece of the world for my words to exist in its written form. My words that give form to what is within me are valid here. My opinions might be wrong, or even my beliefs, but my very inner being cannot. But the world does not discern the difference. Each time my intention is is put out into this world, it will be subject to misunderstanding and disbelief, destroying my person. The words I keep within me or written in this very space, do not subject me to the same destruction. It is far better for my safety and existence to keep those words within this rectangular space.

Labels: state

Sunday, November 27, 2022

Avalon's Handbook: How to love and live with someone like me | understanding #disability | #avarecs

How to love and live with someone like me: part two of a series of posts. ICYMI, read part one here.

In order to discuss ableism, and how it manifests in relationships with people like me (see part one in this series) - we must first understand what disability is. According to Defining Disability: Understandings of and Attitudes Towards Ableism and Disability (Friedman and Owen),

Disability may be defined as "preventing or slowing action, as an atypical function, a lack of independence, and as a socially constructed obstacle."

This is just one concise definition of disability explored through psycho-social and sociological aspects. It is by no means the only way to define disability, but for now, simply knowing this fact means becoming aware that disability goes beyond what is visible and easily identified, like in those few examples we had in our civics education textbooks from school: seniors using wheelchairs or walking aids, those who are visually impaired and use a cane, those who are Deaf and use sign language to communicate. Perhaps later textbooks might also include examples of PWDs that have intellectual disabilities and learning disabilities, although those textbooks might be unfortunately late to the game of teaching children about them. But what these standard school textbooks give you are just examples of disabilities, and this list of examples is far from being exhaustive. We need to go beyond textbook examples, and unlearning the assumption that a list of examples - even one that is continually updated as society becomes more sophisticated - is how disability is recognised and understood. This is especially true for Singaporeans: we are taught these examples in school, and then most of the time, teachers have to quickly shift back to academic subjects, which are considered more (and not equally) important. What then is likely to happen is this: if we encounter a person with a form of disability that isn't immediately identifiable by that example we remember from our school textbook, we don't realise we have to equally treat this PWD without discrimination and ableism, and thus make appropriate accommodations for them, and we then pass them by.

In order to truly understand disability - and thereby know how to not be ableist - you need intrinsic skills that allow you to fully put in yourself in the position of the PWD. If you educate someone so that they have the ability to put themselves in another person's shoes, then they are more likely to independently identify disability beyond the textbook illustrations they were taught in school. It involves developing character values such as empathy and compassion; broadening an egocentric attitude into one that is others-centric and non-discriminatory against people who aren't like them, or the people they are familiar with in their own social circles; and cultivating the desire to continually learn how be a better person. All that will consequentially help us learn how to not be an ableist - by viewing the world through the perspective of PWDs, which is then manifested in action - than a list of examples ever will. It will also help us check our discriminatory behaviour towards people in other sectors of society that are considered minorities or different.

It is in effect simply the age-old adage of teaching a person how to fish versus giving a person a fish - or giving the person examples of the different species of fish in a textbook (or blogpost). This is why in part one of this series, I wrote that learning how to love and live with a non-abled person has to come from love itself first and foremost, and not by simply applying static how-to suggestions alone to try and improve your relationship with a PWD. Because that would be doomed to failure: your actions will never seem like enough.

Unfortunately - and bear with me as I explore this culturally - the trend I see is that many Singaporeans generally lack in this innate desire to learn how to truly put themselves in another person's shoes, be they abled or disabled. As kids we were likely often scolded by our well-intentioned parents: "Don't be kaypoh!" or "Why are you such a busybody, do your own thing!" So even if a child has an innate desire to be helpful towards their friends and neighbours, it is often snuffed out, and then redirected towards only doing their 'own thing' - which generally tends to focus exclusively on the academic. Instead of being urged to 'find a need and meet it', we perpetuate the attitude of "don't be busybody". Thus, as adults, we no longer (if we ever did) see that we have to anticipate the needs of others to be a responsible member of society - we just need to focus on whatever obligations of our own, and it ends there. If someone needs help, they will ask for it, so you don't need to bother identifying their needs and offering them help in those identified needs. Otherwise, "don't be kaypoh."

Singaporean society generally tends to value self and family, but nought much more. While growing up, if we wanted to help a stranger, we might have gotten criticised like so: "If you have the time to help other people, why not help [insert family member] with [insert example of family member's need or some other familial obligation]?!" Popular examples include: visiting grandparents more often, help with housework more often, tutor your younger siblings/cousins with their schoolwork, help out in parents' businesses (if applicable), babysit for your infant/toddler nephews/nieces - the list goes on and on. We should be considerate of others, but these 'others' should be family only, even if you are willing to be considerate of both family and other human beings beyond the scope of family, something that young people have the energy and time to actually achieve successfully.

Then when we grow up and become parents ourselves, our perception of what our child's needs are - they come first and foremost. Nothing wrong with that emphasis of course, that goes without saying. But too often this mindset is limited to the extreme, such that we actually have blinders on when it comes to anyone else besides our offspring. It is as if we think we are the only motorist on the roads and other vehicles do not matter, because all that matters is that we get to our all-important destination. Using a turn signal would cost the driver nothing, but such myopic, selfish drivers are so blinded and consumed by their journey to their destination, using a signal will not be worth the bother because they need to pour all they have into getting to their destination. Swap the analogy of the destination with your child's needs, and the young Singaporean parents I described with those drivers who think they are the only motorist on the roads. This is the cultural phenomenon I am often observing in this generation. We mistakenly see our goodwill as finite, and limited - to an either/or, Us vs. Them situation - instead of seeing our capacity to be gracious and compassionate from a broader perspective. Such a limited perspective causes you to think and believe that the all and utmost that you can ever give to another human being, a complete 100% is already given to your child or your family unit, and you will then have nothing leftover for other sectors of society, not even a morsel which could still make a difference for one person, through simple words and deeds. It may even be taken to further extremes by some Singaporean parents who don't think it necessary to talk to other people in public with any consideration and kindness except when speaking to their child.

But the truth is, goodwill is not finite. Many considerate acts of kindness, and the adopting of non-discriminatory perceptions of other humans - these cost you nothing. That kind act will not deplete your ability to give to your first priority, and your child will not suffer as a result of you being considerate and non-discriminatory towards all the other lower-priority sectors in all of society. We need a perspective that considers not just ourselves and our families, but also other sectors: our friends, co-workers, neighbours, service providers, strangers, and people with less privilege. What you can give to these varying but lower priority sectors is of course limited by what your resources, but these secotrs of humanity should be considered in the first place. From my observation of many Singaporean parents in public, There seems to be no prioritisation of the giving of goodwill according to a set of multiple concentric circles, an internal system that illustrates an all-inclusive perception of society that you can contribute to, where the most important, family, is the smallest centre in the middle, friends in the next bigger circle, co-workers in the next one after that, and so on, like Russian nesting dolls. A limited and finite perspective is of just of two circles that equate to self and family; a Venn diagram without any other circles representing every other group of human beings you will come across in life. If we adopt the limited mindset, we will not be able to even think about marginalised sectors of society such as those with disability. We need the perspective of the concentric circles in order to even get to ableism to begin with.

Getting back to the gist of being able to adopt the perspective of a PWD, of finding a need and meeting it, here is an example how it all that would look like in the real world, versus the flawed mindset that tells us not to be busybody and that our goodwill is finite and should only factor in self and family.

Imagine that you are at the supermarket picking up groceries for the family, after which you are ferrying your kids to their extra-curricular activities e.g. music or gymnastics lessons. Behind you in the queue is someone who is actually a PWD, but they don't exactly look like ones from those school textbook examples years ago: instead, they are young, well-groomed - using a walking stick, yes, but otherwise they look exactly like a 'normal' person. Giving your position in the queue to this stranger behind you will shave five minutes off the buffer of total extra time for transporting the kids, - for instance, from a total of extra 15 minutes - that you had planned, so that you could comfortably ensure your kids arrive at their classes and get ready, before their teachers start class at around 15 minutes after arrival. Being 15 minutes early is more comfortable than being ten minutes early, which is what you will have instead if you gave up your spot for the PWD.

Somebody with the either/or, limited and finite only[self+family] mindset would see that these extra minutes being used for their kids to comfortably get their kids to their lessons before classes start - specifically it has to be 15 minutes, and not ten - this is the only right way to go here. They will not consider another option unless it is an extreme life-or-death situation, and one that successfully takes their attention away from maybe looking at their kids roaming around (or worse, looking at the phone in their hand, the default mode for all other Singaporeans without kids in tow). They wouldn't have even noticed this stranger queueing behind them, in fact, so they would not have then pondered whether this stranger had an actual disability, or whether this stranger could then benefit from being given their spot ahead in the queue - even though it doesn't cost them a cent to make such an offer, but help equivalent to the price of five minutes' worth of comfort.

Contrastingly, someone else who has the concentric circles mindset would have another thought process instead: they would be observant of the actual human beings near them, then automatically, from a force of habit, they would find a need, and - should a need be found - see if they could meet it. This thought process might go like this: they automatically notice the person queue up behind them, then they become aware that this stranger is a PWD who has impaired mobility and uses a walking stick. Their thought response may lead them to consider if the PWD could be helped in any way, such as: help with a shorter wait time (because standing for long might be painful for them), or help carrying their groceries which might be heavy (and then realising they wouldn't need such help because they were using a trolley, and this idea would be eliminated), thus arriving at the thought about giving the PWD their spot in the queue. But not before also weighing whether this was going to cost them a lot of unwanted stress and anxiety for a higher priority of humans to them - their kids - if they were to give up their spot. The effort required to open their mouth and speak to the PWD is not at all counted as an additional sacrifice. The cost is five minutes. And so, if this five minutes could be spared, they would willingly offer the PWD their spot in the queue. (Even if the PWD doesn't accept our offer, we did our part, which is all we can do, isn't it?)

Sounds familiar? Guilty as charged yet? I see or hear of examples of Singaporean self-absorption every time I am in public. If you don't, perhaps you yourself suffer from what I half-jokingly refer to as 'Singaporean Self-Absorption Disorder', of which most of us are unaware, therefore we are likely undiagnosed and untreated. I know all this seems like a digression from the topic of this series, but it isn't - opening our eyes to this issue of ableism in a larger context that we can see every day, through both positive and negative examples, helps us to see it introspectively as well, which we can then inculcate in the next generation. I shall end this observation of contextual perspectives here, with this chart below from SPD - it illustrates how others-centric we are (not), compared to other ASEAN countries, through volunteerism statistics - so as to complete my point on this.

Oh yay! We are better than... Cambodia, Vietnam, and ooh! Thailand you guys are catching up! Go Team Singapore!

So, in a nutshell, this is my take on understanding disability - by first developing intrinsic character values, attitudes, a desire and motivation to be a better person, so as to consequentially learn to fit yourself in the theoretical shoes of a PWD. I shall henceforth assume you have begun to try out putting on such a perspective, and maybe agree with me on this, even if only in part. I will now go into the definition of disability proper.

Using the definition cited in the first paragraph of this post, I am going to pick out just one component of it - that of atypical function - and further describe what it means from my point of view. It is not just for the sake of trying to keep it simple that I only choose one portion of this definition to expound on; I also feel that the definition's other components of limited action and lack of independence are not entirely universal or inclusive. Perhaps it would require that I read the source article in its entirety or learn from an academic well-versed in these theories, in order to change my opinion, but for now exploring that would take me offtrack from writing this. That component of socially constructed obstacles, however, is not untrue, but from my layperson point of view, it is not so much a definition of disability, than it is a form of ableism - discrimination that is applied alongside other forms of ableist obstructions that are a reality for PWDs (like how water can be in three forms: solid, liquid, gas). Again, this is how I understand it, as someone who is but a PWD myself.

So, let's start with atypical function, and what that means. I will not be striving for academic accuracy here, but mere usage of basic logic and simple words as much as possible. That may read like overgeneralisation, but I am writing with the general public in mind, not an essay for a class - especially since my ADHD brain already means I tend to be verbose.

Atypical simply means that which is 'not typical'. It is a more equitable term than 'abnormal', which has more negative connotations. Referring to us using words like 'abnormal' impacts those of us who live with disability negatively, because it implies that there is something broken inside us, in our minds and/or bodies; therefore using that word is an assault on our sense of self. If we are 'abnormal', it means that there is something 'wrong' with us that needs 'fixing' - or worse, is irreparable. It isn't just about our self-esteem: the usage of negative wording in describing PWDs in turn affects how we try to live our lives, and how others treat us if they perceive us as deviant from the norm. We will spend a lot of effort trying to adapt to a so-called 'normal world', which in reality is simply a standardised world that is not made for us. If we strive to achieve standards that are supposedly the 'right' ones but aren't adapted to our capabilities, then we will encounter failure far more often than our otherwise 'normal' peers. Thus, 'normal people', meaning all human beings who are not 'broken' like we are, are actually better than us, because you can achieve success by said 'normal standards', and you aren't deficient in any way. We cannot match up to your standards of success, thus we are sub-par and not your 'equals'. Therefore we do not deserve equal rights like you do, or to be given resources and accomodations that help us access those equal rights. If we want what you have, that is to say, to have - equally - in all measures, as you do, then we should just fight for these rights, fight to change ourselves so that we can fulfil the impossible task of not being disabled, and if we fail it is just our own shortcomings and character definits to blame, not due to any medical conditions that we have. A pervasive misconception throughout society will exist, because through casually repeating inequitable words, we perpetuate attitudes and actions that stigmatise us. So this isn't about us being so sensitive about our feelings and feeling hurt by small things like incorrect words being used. This is not about us being pussies who cry foul all the time about how life for us is so unfair. We know that life is unfair for you too. But even if we were devoid of feelings, the usage of words like 'abnormal' that denote a quality of 'less than' cascades into real world applications. Every time we describe disability as abnormal or deviant, we then perpetuate the stigmatic perception by society that there is something less-than in those of us who live with some form of disability. Simply because what is repeated through word of mouth and in the media gets reinforced and popularised with each repeat. Hence the usage of the more neutral and thus equitable term 'atypical', as opposed to words such as 'abnormal'. Being typical means you conform to the general - agreed-upon, widely accepted, or proven by research - characteristics of whatever you are describing, such as typical functions of the human body - which brings us to the second half of the definition.

The term function in this context can be further divided simply into to two forms - function of our bodies, and function of our minds - within the context of our health. Bodily or physiological functions are manifested in our physical bodies: be they external and visible to the naked eye, or involving our internal organs and their systems. To make it straightforward for any layperson to understand, think of common medical specialties that would have clinics in an outpatient medical centre, all displayed on a directory mounted on the wall of the centre's lobby. Specifically, think of medical specialties that directly refer to the main parts of the human anatomy - examples such as cardiology (heart), respiratory (lungs), and so on - these are examples of our body's physical functions. The function of our minds, by contrast, relates to our mental health, primarily psychiatric conditions. These conditions usually involve differences in brain chemistry or structure. But that does however make things a bit complicated for someone who is not medically trained: what category then, physical or mental, does neurology actually fall under? I often joke with doctors that patients whose symptoms cannot be explained by all other specialists will end up being referred to neurology or psychiatry. Again, my lay explanation for this is generalised for basic understanding, like so: conditions not found in psychiatry's manual (the DSM), but are neurological in origin or have symptoms relating to the brain or the central nervous system (nerves in our body), they all generally go to neurology, which would then mean they are conditions affecting our physical bodies, because the brain is a physical part of the body. And so, function refers to both mind and body, mental and physical. The key similarity in both, which is really important to note, is that whether it a physical or mental condition, it is an actual medical condition that is diagnosed and treated by a doctor. Both will translate to specific differences in the way their body or mind functions, because of the medical condition that a patient has, and these differences are not a personal failure of the patient.

Back to simple logic (which to me often means something that can be explained with pseudo-math):

atypical × function = disability

Where:

atypical = not typical, AND

function = (body, mind)

Therefore:

Disability = (function of the body and/or mind) that is (not typical)

In the next part of this series, I hope to build upon the definition of disability further in order to explain ableism in my own words. We used to simply term it as discrimination towards people with disability, bringing to mind how we shouldn't treat PWDs negatively. But we use ableism now. Is there a difference? To be honest, just looking at popular definitions of ableism online - instead of reading academic articles and such - I find the present general understanding of ableism rather incomplete, if not inaccurate. This is what I hope to write more on in my next post. For now, I shall end this wall of text.

Friday, November 18, 2022

Clarity #poetry | with a preface on my process for this poem

Preface

This poem came out oddly, like it woke up on the wrong side of the bed. Things that normally flow from the figurative pen easily, such as imagery and cadence - as if the poem is another entity in control and I am just the messenger - are all completely off today. It makes some sense, seeing as the poem is about needing clarity. Anyway, no matter how many times I edited it, this version below is the best one I could rub out.

I only studied literature in school for two years so I do not know how to formally critique this poem or what rules should I abide by or how this is an example of breaking said rule - a bit like how I learned the guitar. I just try my best not to sound 'contrived' (read: like a poser), and arrange the right words in the way my heart would speak. Using imagery is what helps me understand the world. Writing words and arranging them in the rhythm and flow of a poem helps me when I need to not explain what is on my mind, but to express what is in my heart. That means my creative energy not directed towards making sure the reader fully understands it, but towards giving the reader something to appreciate as an abstract work of art. It can be subject to differential interpretation, or applied to the reader's own unique world, or simply read so that the reader can feel what I feel. Poetry is more visceral, Romantic, and does not place the onus of perfect clarity fully on the writer. It is almost like another art form altogether.

Also, poetry has always been equally for me who writes it, as it is for an appreciative reader, even a hypothetical one. I wrote a poem today with a lack of clarity, because today my heart and mind are muddled. This poem talks about an event that is causing me confusion, but it might lead to clarity in future. Which is why even though this might be a shitty poem, I am still going to publish it here. I wrote it for me.

Love covers all -

ego, transparent

scales fall -

Lights,
everywhere -
as fireworks
assaulting eyes:
neurochemistry
firing, receding,
all dimensions
Lights as
noise - loud, deep;
heart loses clarity -
Blinded -

tabula rasa,

breathe again.

Silence -

between us, broken

by truer words -

finally spoken

of Love, a world

of two, perhaps

of one, no more.

hypothetical

eggshells erode,

in waves - crash

recede, drift -

over aeons,

bare feet, soon

on fine powder,

footsteps, silent

marshmallow

cotton-candy

warm sand

enveloping feet -

each step is Love

Pain erodes

into - memory.

no, not yet -

Waves in a storm
crash upon me
crash me -
onto rocks
fog, darkness -
making air -
opaque
- suffocating
Lighthouse -
out of grasp
away from
Safety, Love
- Life itself
I am torn
to ribbons,
snuffed out
from a distance.

a clean slate:

not - to vacate

the past without

retrospect,

- to act as

waves, tides,

illumination -

through

a truer Love

an absence of ego

words - both ways

- in times of calm -

breathe again.

Labels: words

Tuesday, November 15, 2022

Avalon's Handbook: How to love & live with someone like me - part one of a series

Part one of a series of posts.

Someone like me: a woman with depression, anxiety, complex PTSD i.e. trauma from adverse childhood experiences (ACEs), fibromyalgia, secondary conditions due to injuries from a suicide attempt, ADHD, and other unexplained symptoms due to currently still-undiagnosed illnesses. Someone with disabilities that are both invisible and visible, physical and mental, because of the above-mentioned health conditions; all of which are moderate to severe, chronic and lifelong (read: incurable). People like me are known by several names: persons with disability (PWDs); spoonies; those who are neurodiverse as opposed to neurotypical. The specific collection of health issues I listed above does not look the same in others who might coincidentally have a similar illness, injury or disability. It will have differences in the way their symptoms present and in their severity: diagnoses have to be applied to me uniquely and specifically. Add all of the above to who I am as a person in terms of my strengths and weaknesses, my character, identity, personality, intellect, beliefs, life goals and dreams, and you have a simplified summarised description of what I mean by 'someone like me'. I have to be emphatic about describing myself in terms of these illnesses and disability, because that is my reality, and what this series of posts will be about. If you feel differently, perhaps believing instead that I can be cured, that I shouldn't be so negative, that whatever difficulties I face can be overcome by hard work and commitment alone, then there is no point for you to read further unless you align yourself with what I am saying. Because if you don't, and you try to implement whatever 'suggestions' are contained herein, they will not work over the course of your relationship with someone like me. The way you behave - in terms of acts and deeds; in what you explicitly communicate out loud in words, and what you implicitly communicate through body language - if that is all that you are trying to change and nothing more, your attempts at change will not work, because what I will write about goes beyond actions and words. It goes deeper, into your belief system and attitude. Whatever examples and suggestions I mention in this series of posts cannot be merely carried out as is - it has to first come from the heart, and originate from love that is unconditional, a love that helps you put yourself fully in my shoes.

If you want to know how to love and live with someone like me, it presupposes that you actually - do - love me, unconditionally, and that you truly want to do so for as long as is humanly possible - by my side, with me by yours in reciprocity. It also means that you are willing to do so with your eyes wide open, seeing not just the complete laundry list of my health problems, but knowing that you are taking on the task of love that is way beyond what your peers will ever take on in their relationships with abled people. And despite having to work so damn hard every day to overcome the iceberg that this challenge to love me is and will always be, it may not necessarily seem to others that it requires that much work at all, and maybe no one will even see you as a saint - they might even unjustly criticise you for not doing enough, even if you read this guide and strive to apply it in its entirety. It will be truly that much more work, and stress, to love someone like me. But then again - it is much more work and stress for me too, in simply living every day successfully and loving myself, as well as to love you in return. So, you wouldn't be alone in this challenging endeavour. However, it may not be more rewarding as a result of the extra work you need to put into a relationship like this, especially when you look at it with cold, hard logic. This only makes sense when love is involved, otherwise this how-to guide will seem to suggest the impossible in all of its contents. This love has to be really and truly deep, in order for the understanding and application of this guide to be feasible. Love, with the kind of depth that you hear described in the lyrics of modern-day love songs in every language, in the words of literature and poetry from across the ages; words using imagery that is seemingly too hyperbolic and impossible - except to the one who is in love.

I need to add disclaimers before I begin. What I am going to write about does not mean that I do not need to try and work on my recovery journey; or that I have neither done nor will do anything wrong in a relationship, past and present. Nor does it mean that I have nothing to change and improve on continually, in order to be a better life partner to someone (things I can feasibly change and improve on that my health does not render impossible for me). I need to add this caveat because I know that while I am discussing this topic, I will be reminded of and rebuffed by my shortcomings that have nothing to do with the topic delineated in the title of this blog post. Even though this seems like basic logic, emotions will inevitably lead any rational mind offtrack sometimes. I too need to be circumspect of any failings of mine not due to any of the illnesses listed above, and that I should always be willing to work on such weaknesses if someone who loves me tells me so.

I also need to say that for an abled (or a less disabled) person in a relationship with someone like me, that person is going to often feel like their needs don't matter, because their loved one's needs will always seem more necessary, urgent, or important. But this is not true, and I am cognizant of this reality. There are healthy ways for both people to be able to communicate what they need, and to deal with those needs, without neverending conflict and heartbreak. I will try my best to suggest how that can be done in my writing of these blog posts.

Before I begin, I need to introduce some concepts. First of all, the concepts of disability and ableism, before going into specificities of a long-term relationship with a PWD. This is not an abstract discussion, but a very real phenomenon that people like me - who live with disability (visible and invisible, physiological and psychological), chronic illness, chronic pain, mental illness - reckon with on a daily basis, and throughout our lives, even if it is unintentional or due to being uninformed. Introducing the concepts of disability and ableism will help me explain this how-to guide that is specific to me and my collection of medical issues. I do not want to sidetrack too much into this, so it will be easier if you googled the concepts of disability and ableism as I continue sharing with you this attempt at a handbook. The next post (part two) in this series will tackle disability first. [Eventually I will add on useful hyperlinks in this post as I continually edit and add to this ongoing series.]

All of the above seems like a lot already, even before I have actually started on the content proper. I think it is best to keep each blog post short, so for now I will leave you, my reader, to reflect and ruminate on what I have outlined above. Then, you can continue the series with part two.

Labels: me

Thursday, November 10, 2022

Week 1 of being on ADHD medication

It was a torturous route that got me there, but I'm finally on ADHD medication, which I started last Saturday. I've since been obsessed with ensuring it works, and in what ways, making sure I have something to report when I have another psychiatrist consultation. Too obsessed actually. I have read and researched so much on ADHD just in the past six days alone.

At first the doctor wanted me to start on 20mg methylphenidate (Medikinet MR) but I told him that there was an SNRI I took once, venlafaxine, that made me become manic, so he decided to start me on 10mg first. But after a couple days of that, I felt absolutely nothing, be it beneficial or adverse. Because my life is on such a dangerous precipice right now, with complete executive dysfunction, I really didn't want to wait the recommended minimum of one week before titrating to a higher dose or when I next see a psychiatrist. So I decided to take 20mg, and see if that made any difference.

It did, somewhat. Firstly I felt like I had more energy, instead of the usual chronic fatigue that has been plaguing me since I came down with fibromyalgia; and to a lesser degree much of my life before that as well. It was one of the key factors that led the neurologist to my diagnosis, in fact. With the alleviation of fatigue - significantly, though not completely - it became less of a dread to do non-physical home care stuff such as online purchasing,which I can do in bed. It felt that I was procrastinating less; a subjective assessment, because I still very much have ADHD time-blindness. Which leads me to this time-sucking rabbit-hole I ended up in: spending time online researching ADHD, specifically with regards to symptoms I should assess to see if my medication is working. In fact, this boost in mental energy seems to be contributing to my thought hyperactivity. If I can channel it into the right essential self- and home-care activities, it would be useful. But so far it hasn't always worked.

I know it hasn't even been a week, but time is running out: I need to get my very dysfunctional life in order, and get back to work. This is time-sensitive, because the very trigger that worsened my undiagnosed ADHD so badly, to the point it finally became recognisable, is the stress from J not giving me the rest of my share of the sale of my old flat; I am running out of cash to the point I might become homeless soon. It has been repaid so far in drips and drabs that aren't enough to cover what I need to survive. Therefore I need all my symptoms to improve so I can get on track to making my life work, solving the problems I have right now. I am in no place to do that now; it is hard even for me to brush my teeth and wash my face daily.

Hence my desperation. That's why I say my life is on a dangerous precipice.

I am thus trying to channel my increased energy towards doing physical self-and home-care activities, like cooking, or showering, or doing laundry. I am trying really hard but that needle hasn't moved yet in the right direction.

So far I have tried being more aware of time: the ADHD brain cannot perceive time the way normal neurotypical people do. It explains why I can't use digital clocks properly, because it doesn't show me how much time is left till the next hour; and why I am always late no matter how many hours beforehand I start to get ready to go out. So I try to check the time more each day. I am also trying to find a way to become aware of my tendency to hyperfocus and not realise hours have gone by. It is hard to stop when you are in the flow or rabbit-hole, but I am trying to find a way to 'end scene' my daily obsessive ADHD research when I finally realise too much time has passed. This will help me transition to the next task, especially since that task would likely be an essential task like feeding myself near dinnertime.

I can't seem to feel less dread about the physical activities of daily living (ADLs) yet and I'm stuck: I don't know how to troubleshoot this. I don't know when the CGH psychologist I met a few months ago, before ADHD diagnosis but after the onset of executive dysfunction, to finally schedule me an appointment with her to start CBT. I will ask again for the third time when I have my next consult. It shouldn't take months for me to get help with something that has reached boiling point. So I'm on my own. I have always found it hard to do simple basic tasks, it has just been harder since my separation from J, and then even harder still, when my financial situation has worsened.

As of now, my clock says 5pm. I need to get myself off the bed and try doing one of those physical ADLs. I can't keep failing every day at this.

Labels: share, state, status, therapy

Wednesday, October 26, 2022

ADHD in me? A closer look

It’s common for ADHD not to be diagnosed until adulthood, especially for girls and women.

I have spent over two decades reading up on depression, anxiety and chronic PTSD from adverse childhood experiences (ACEs) because these mental conditions are what I have. But I don't know as much about ADHD beyond how it presents in children and adolescents with whom I interacted with in a teaching capacity back when I taught art or was a private tutor. Then I learned about fibromyalgia and similar neurological conditions involving chronic pain and chronic fatigue, ever since I got formally diagnosed in my late 30s. I knew that chronic pain and inflammatory conditions were comorbid with depression and chronic PTSD. But I didn't explore other comordities like ADHD even though it has been shown to be linked with what I have. Now, I am playing catch-up. But first, let's do some more reading up and conduct proper self-assessments to be sure I am not just being paranoid and a hypocondriac infatuated with Dr Google before I finally get a formal diagnosis.

I really did buy in to the myth that people with ADHD are fidgety, or often cannot remember whatever that is just spoken to them, because I saw these signs in students of mine who were formally diagnosed as having the disorder. I don't personally have a need to fidget, or squirm in my seat. At best I always have a song in my head and dance to or tap to it to myself. Plus, I read a lot and can often retain what I read, sometimes even from just reading something once. I do sometimes get off-track when I am reading: something I come across triggers a tangential thought, then that triggers another tangential thought, and then the daisy-chain of thoughts is formed - my mind becomes focused on something else entirely different from what is on the page in front of me. It is why I put on my glasses to read important stuff that I cannot get wrong and must focus on. Otherwise I can still see the words I am reading with general clarity. If not, it would be inconsequential anyway, resulting in copious typoes in tweets and text at worst. How does all this equate to ADHD?

My mistake was to think that ADHD only had a single presentation, and that it is the same in children, teens, adults, and across all genders. It is also often spotted in childhood by the adults around the child. But this could not be further from the truth.

Firstly, ADHD has three different presentations: hyperactivity-impulsivity (ADHD-H), inattention (ADHD-I), or combined (ADHD-C). Here is a quick checklist of symptoms in ADHD-H and ADHD-I and how they differ:

Taken from Q and ADHD's DSM-V ADHD Diagnostic Criteria

The website I took this chart from also has a self-assessment tool that is specific for adults, which I did download [PDF] and use. More on that later. For now, based on reading the diagnostic criteria, I definitely have the "five or more symptoms of inattention and/or five or more symptoms of hyperactivity/impulsivity", specifically the and in "and/or" meaning I have a presentation of ADHD-C. All along I thought that because I didn't fidget non-stop or squirm in my seat all the time, I obviously didn't have ADHD. At worst, the older I got, I just made sure not to get myself into situations that requires staying in my seat for something I didn't gauge as riveting enough to go through that discomfort. I don't like attending classroom activities to learn. I now cannot stand sitting in a movie theatre seat for the entirety of the movie, and till now I still prefer watching TV series instead of films. Same for church. And I thought it was simply because I felt claustrophobic and only felt comfortable in a cushy seat near the door and along an aisle. Well, now I know.

ADHD also looks different in adults, especially adult women. Here lies another misconception I had, that this was only true for autism. Which is why looking at a self-assessment tool or checklist specific for adults or adult women is important. I took the adult ADHD screener from Q and ADHD and here is what my results look like:.

I reckon this would be a good tool to present to my psychiatrist so he can know the specific problems I have within each of the 18 symptoms. Especially since I now have a new guy: my previous psychiatrist has gone to a private clinic. He has known me for years and so would be able to quickly assess me as compared to someone who has to know me within a hurried consult and from scanning typed notes. I did ask my other doctor who does my psychodynamic therapy with me to share this with my new doctor, even though what is discussed in psychodynamic therapy doesn't go beyond what is said in that room. My back up is to get help elsewhere if this new doctor decides not to believe me or to medicate me. Such contingencies are often necessary in situations such as government hospitals, invisible illnessess like chronic pain, fatigue, or mental illness, or if you are a woman. I also often write a list of relevant points to the consult for any new doctor I meet and a list like this would help in being listened to and believed.

This appointment is now roughly a week away from today. I am still hanging on. If you are a friend who knows me, reading the symptoms of ADHD-C in adults or women, do they make you go, "Yes! OMG." because they ring true, or do you disagree? Apart from my GP and my therapist, I have also shared my suspicion of undiagnosed ADHD with my mother and she texted me back saying it does describe me to a T. It is good to have more than my own perspective, since women tend to underreport symptoms or their severity. I might have put a score of 0 or 1 for something that you see is a 2 or a 3 (referring to the scale used in the self-assessment tool abovementioned), please text or tweet me so.

Labels: state, status, therapy

worlds upon words

It's going to be an exposition of my little sub-worlds, all in language that I try to put together. This blog was born way back in 2003, and I post more on social media now. I suffer from clinical depression, fibromyalgia, and a walking disability from surviving a suicide attempt. I have a passion for animals, writing, art, music and humanitarian work.

this blog is

about this song

about my calling

taking avalon apart

like my transitory Mecca

many things

clinical depression

links to me

my twitter

[wip]

link
text

Dad