meds & bets

Growing up, I always had doctors come to the house – we called them ‘Uncle’ because they were dad’s close friends. Nowadays, each time I go to see my favourite GP, I miss those days when doctors did house visits. It’s a literal nightmare at the clinic, teeming with germy humans (well, ok, why else would they be there, right?), many have no idea how to keep their juices to themselves. There was one lady today coughing and hacking and making all the noises appropriate for whatever she was suffering from. Horrifying, even without a global pandemic hovering above, but in the context of COVID19, I shuddered. Thank goodness our government has made wearing masks mandatory, with strict penalties for non-compliance. One occasion where I am glad compliance was enforced without exceptions, even though I am not keen on compliance much, this is imperative. Throughout my adult life – as soon as the ‘Uncle’ doctors retired and no longer came to our house with their little black leather bag of mysterious potions and sharp needles – I have dreaded going to the GP’s clinic. I cringe and agonise about what horrible stuff I could catch there, even if I didn’t present with that particular kind of ‘sick’ at the beginning. It is almost without exception a chaotic mess of humans in various states of un-wellness with human droplets and other infection carrying fluids being happily and sometimes lavishly shared, like a twisted, eerie unholy communion.

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art of eating

Eating is a fine art. I don’t mean gastronomy or whatever kinds of skillsets needed to be a gourmet or food critique. I mean, the art of eating when your autoimmune condition is the type that brings forth deep, large and excruciating aphthous ulcers in every nook and cranny of your mouth and throat.

Of course, it depends on whether you are a foodie or not. Fortunately for my survival, I’ve been an avid foodie since childhood, which was when this condition decided to rear its ugly head and I’ve actually never had a real, natural remission since. Fifty years of pain is a wearily long time, and believe me, one never does “get used to it”. Have autistic hypersensitivity doesn’t help the pain at all, it amplifies its effects to other parts of the body in a palpable and engulfing way. But there is a flip side, as life usually is multidimensional in all its glory. My ‘seeking senses’ are also heightened, which makes me a determined, driven and almost indefatigable foodie. Almost. There have been times when I surrendered to the pain and just didn’t have the strength to foodie on. Continue reading

reviving love

 

I wrote and recorded this song 20 years ago, with Leena Salim. Directed, arranged and piano played by brilliant musician, now psychologist, Dr. Chris Fong. All made possible by generous funding from a treasured friend.

When Leena contacted me about reviving this song in her Throwback Thursday series, I was delighted. Here is Leena’s lovely MV with some photos of her, her cat, and Lucy and me. Somehow, we never photographed the both of us in the studio, I think we were having too much fun.

The world is in turmoil in ways and on levels not experienced before in recent times. All the heaving, swirling, churning and seething is too overwhelming for me. I’m no advocate or activist of any kind. I’m that bubble-head person that says I want “World Peace” with a sombre straight face and mean it. I’m also that cynic who has observed humanity for 55 years, and read about human history, and I am in despair, because humans have learned next to nothing despite our thousands of years of practice. I know I have no power to heal the world. So, here is my music and art, because this is an inexorable process and journey for this one insignificant Autistic life form, Me.

Fools, 2000. Music and lyrics by Dawn-joy Leong. Vocals, Leena Salim and Dawn-joy Leong. Director, arranger, pianist, Chris Fong.

“Where are the Fools?” they ask,
Well here I am.
Just another actor in the stage of life.
So, round and round, we go,
In search of truth,
Chasing our dreams,
The rainbow’s end,
Would we ever find?

I believe in Love,
And truth and hope,
And within a dreamer yearns
For love to find
Scarcely daring to admit it to myself,
A fool.
But then you came into my life
And suddenly I have found it in myself
All the courage to love and be a fool for you.

But life goes on, they say,
I guess it’s true,
And I know our paths will soon
Begin to part.
The sunlight in your hair
the pealing bells
Every haunting note
Will always stay deep within my heart.

Why are we so scared to love and give
Never wanting to admit
The loneliness, the pain.
If only the world were kind to us
If we could only be kinder to ourselves
Maybe we would find a way
To be true, to love.

(Hit a Like or Follow on Leena’s Fan Page too, while you’re at it!)

COVID19: sonata of comfort

musicscores

What shall I play today?

Conundrum. On the one hand, I am loving this stay-home directive so very much, there aren’t enough hours in the day for me, in fact. Working from home is peaceful, and I am much more productive.

But here’s the rub. The painful dichotomy. My anxiety levels are rising and bouncing off the walls and roof. Why? Simply this: so many of my friends around the world – autistic ones too – are just not coping well with this enforced isolation. No, I am not talking about those who are grumbling incessantly about their deprivation of haircuts, spas, manicures, pedicures, massages or ‘bubble tea’. I am talking about those people with mental health struggles who are in various states of panic, despair, incapacitating depression, feeling suicidal and self-harming. I feel my friends’ pain, but I am helpless to alleviate or ameliorate. I am at a loss for words, I don’t know what to say and am afraid to say anything for fear of sounding too glib or worse still, in case my own personal joy becomes offensive to them. Continue reading

COVID19: zoom-boom

Zoom

My friend Maxfield Sparrow, autistic advocate, activist, writer, poet, musician and all time amazing person, wrote this article: “Zoom Fatigue: A Taste of the Autistic Experience“.

Here are some really excellent points from Max Sparrow. All true. For me, apart from already struggling with the things Max has pointed out, Zoom / Skype meetings are still the lesser of two terrible evils called “meetings”. In-person meetings mean, for me, sensory overload and risk of infection each and every time. Hypersensitivity + immunocompromised = every activity is a careful choice. Each time I attend a work-related meeting or event, or even a social gathering, I have serious choices to make. Either I choose to go by public transport and end up at the meeting bedraggled, sweaty, fearful, anxious and already completely drained, or I spend precious money on hire car and get there with some part of my brain and physical function still intact. Then, during the meeting or social gathering, I endure sensory overload from the built environment, plus sometimes distracting gossip and irrelevant chatter, and I am still struggling to grasp the essentials of the conversations. In-person meetings also tend to go on for lengths of time that to me seem like ‘forever’, because non-autistics love congregating. Not only am I being sensorially bombarded and physically depleted in the most wasteful way (i.e. spending more than is needed, with no gainful returns), my anxiety is compounded in stretto crescendo because I have no idea when this nightmare is going to end. The time is up, but people are still waffling and laughing and cracking jokes that I do not find funny in the least but just automatically laugh along with because what else am I to do? Whereas, the horror of Zoom meetings tend to end more quickly and people are mostly on-point. I surmise that this is because non-autistic people find Zoom meetings dissonant to their natural modus operandi and hence are less inclined to linger? Anyway, for the autistic and those with specific disabilities that put us at disadvantageous positions where functioning is concerned, it’s all about living an exhausting existence because this world system just isn’t built to be the least bit conciliatory towards our modalities. Continue reading

COVID19: detox

detox

detox

Well, I did say I am loving the stay home measures and I cannot get enough of solitude and semi-isolation (I live with mum, the helper and the floofs). I meant it to the last tiny iota. Lucy is loving me being home too. So this isn’t a grumble about being bored with nothing to do at home – in fact, I actually do not relate to the word “boredom” at all. There’s always something exciting to do on my own (or with Lucy), though I’m spending most of my time nowadays working and I wish there were more hours in the day for making art, playing piano, writing music etc. (Sigh. I mustn’t complain, some work is better than none, especially since 70% of all work for the year has been cancelled.)

Detox. During this stay-home period, I have decided to give myself some positive attention and self-care, and do some things that I have neglected to do, for my own wellbeing. One of the things is, I am detoxing from the anxiety-laden activity of phone calls. Yes. You read this right. Most Autistic people actually really abhor voice calls, you know, the kind where you jump in fright and your heart begins to pound excessively hard when the phone suddenly rings? Yes. That. Oh wait, you’re not autistic and you don’t have sensory processing difficulties? OK. Then perhaps you’re one of those who do like phone calls? It’s ok to like what you like, but I don’t like it and I am trying to convey this to my friends who do like phone calls. Continue reading

COVID19: rights

Many disabled people have been speaking out in the midst of the outpouring of personal opinions and complaints etc surrounding the various stay-home or isolation regulations in place around the world because of COVID19.

As a disabled person myself, Autistic and immunocompromised, I empathise with most of the responses from the disabled. Here is one:

 

Many disabled people live very isolated lives. Not by choice but by ableist design. Continue reading

COVID19: travel restrictions

The above is one of a series of three videos I created for the Big Anxiety Festival in Sydney, 2017, a wryly humorous explication of my sensory experiences traveling around Sydney in public buses. But what my videos do not speak about is the seriously perilous danger that I have to contend with when commuting by public transport.

I was reading this article in the morning over breakfast and a deluge of thoughts came rushing in. The article explains how just one cough can spread deadly germs to many, because the germs can linger in the atmosphere even long after the person who coughed has left the scene.

Here is the unraveling of one of the many threads. It is about travel and restrictions, but not the kind you might know. Continue reading

interdependence

I like what D.J. Savarese said about Autistic people living in a supportive community, with interdependence as a model, and not the too-oft lauded “independence”. In this article in Psychology Today, D.J. is quoted saying:

Interdependence is my model. Make sure all members of the community feel needed. We all need to feel loved and included—not just nonspeaking kids. Ask yourself why sad selves can’t get free from anxiety. Learning is not hard, but it requires a sense of commitment. It’s not always easy, but we all love being a necessary part of something bigger than ourselves, and when we are, the community—and each of us—is better for it.

I’ve always ‘felt’ words, a kind of sensory connectivity with words, rather than mere abstract meanings, and the word “independence” felt like a desperate flight away from danger and pain. I associate that word inside my Being with the time of my life where I constantly felt an overpowering white searing fear, inner loathing of my shackled feet, together with the screaming desperation for flight. A bird shackled inside a golden cage. For that bird, “independence” was paramount – even if it meant a terrible lonely and frightening escape from the grandeur of a luxurious prison. Continue reading

COVID19: draconian measures

Screenshot 2020-03-29 at 2.59.28 PM

The latest report from here in Singapore:

Coronavirus: ICA cancels man’s passport for flouting stay-home rules in first such action against Singapore citizen.

The passport of a Singaporean man has been cancelled for flouting stay-home notice rules, in the first such action taken by authorities against a citizen.

The Immigration and Checkpoints Authority on Sunday (March 29) said that Mr Goh Illya Victor, 53, travelled from Singapore to Batam, Indonesia, on March 3.

About two weeks later, on March 19, he returned to Singapore via Tanah Merah Ferry Terminal and was served with the notice upon entry.

But he went back to Indonesia that same day, despite the stay-home notice and warnings from ICA officers that he would breach the notice and could face penalties.

This means that Mr Goh, without a valid passport, cannot leave the country. He remains a Singapore citizen.

 

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