voicing the silent roaring

I’ve been doing a sort of big-ish battle with my autoimmune condition in the past three days. The complete works in quite a bit of horrific glory – if you have any kind of vasculitis you’d know what I’m talking about, but if you don’t never mind. This post is not about my wonderful physical pain. Ironically, it’s about my ‘voice’ – in a multidimensional way – just as I am riddled with so many aphthous ulcers that I am running a fever and unable to eat or speak, let alone sing.

I posted up this song of mine today on my Facebook. About my journey to Beingness. Of all my songs recorded during that period (1999-2000), this one always brings me to tears, and the narrative grows and grows every single day. I want it only to end when I am no more on earth. Being Me is a lifelong process. And the reason I am in tears each time is because I am overwhelmed with gratitude towards all those – in an almost mystical and magical serendipitous way – who have contributed to my Becoming. Continue reading

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: value systems

A close up photo of Lucy's right paw on my left foot.

Together in solitude.

I previously blogged about the travel and commuting travails and choices of the immunocompromised and those with hypersensitivity. The same article about how disease can and does spread is also pertinent to this further elaboration on the same theme. This one is about value systems.

There are many difficult choices that immunocompromised people and those with hypersensitivity face day after day, often for an entire lifetime.

How about the choice of either going to a mass gathering or spending a calm, relaxing time at home with the one entity you love the most in the entire world? Which would you choose? Even without the combination of being immunocompromised and Autistic hyper senses, there is really no competition, is there? But I know that most people do not have anyone they love more than anything else in the world, who is willing and able to be available at all times. Not everyone has a Lucy, and not everyone (in fact very few) loves their pets more than they love human company. So… What do these people do, then, to quell or satiate their yearning for human fellowship? 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

COVID19: hide

Leunig - Egg

My favourite cartoonist is the amazing Australian genius, Michael Leunig. This cartoon by Leunig speaks so much more than I have words for.

Hiding from the rest of the human world is something I’ve wanted to do since the age of 6. It’s not that I was so very clever or precocious, it was just my Autistic sensing that touched, tasted, smelled, felt and resonated with the elemental realm and everything in me wanted to recoil from the devastation that humanity has wrought on everything we’ve ever laid our hands on.

Decades on, and that feeling of retraction has never left me. It is a deeply sorrowful one.

 

COVID19:empathy overload

Autistic people can also crumble from despair and depression due to empathy overload. Yes, you read this right.

I’ve been seeing a rise in social media posts about death of loved ones who have been infected, I am sent into a whirl of grief each time, sensing the horror and fear that these people are experiencing, crammed into hospital wards, confused and terrified, not knowing if they live or die, and then eventually slipping into the unknown, dying without loved ones around. I feel the exhaustion and desperation of the medical personnel, many of whom also become infected, and some join the list of fatalities. Each and every narrative is monumental, and yet, they become part of historical statistics as time goes by. The surge of empathic resonance at a time like this is overwhelming, and the fact that I am unable to do anything at all sends me into thunderous silent despair. Yes, silence can be so loud that it hurts.

The people who claimed that Autistics lack empathy have absolutely no empathy at all for the autistic realm. They have no idea what they are talking about. Empathy overload is excruciating. It can shut the entire body and mind down. And nobody else will see it.

 

COVID19: privilege

In normal times, privilege is associated with wealth, power, being in a majority race / gender, authority positions etc. But these are not ‘normal’ times anymore. Yes, the normally privileged still hold sway, but there is another privilege that is enjoyed now by also those less wealthy or powerful.

Now, in the swirling midst of a global Pandemic, privilege clearly belongs to the healthy.

What is this I am waffling on about?

Privilege means you can laugh and say:

“It’s not so bad, stop being paranoid, just wash your hands, come on, it’s only the elderly and already sick who will die. It’s not gonna happen to you and me.”

Privilege is getting annoyed at a time like this, when you are:

  • unable to embark on your amazing travel plans… guess what you have health and money enough to travel, how wonderful is that! Can’t you wait till after the pandemic?
  • when you are frustrated about having to work from home because you want to feel that ‘vibe’ at the office… guess what, you have a job! how great is that? Many of those in the ‘never mind they’re gonna die not I’ category don’t have a job, and some who are freelancing have lost all their work because of this pandemic, or are unable to carry on working. And, did you know that for years and years the variously disabled have begged for work that can be done at home, and what kind of response do you think they got from employers? Now, thanks to COVID19 you get to enjoy what so many needed but were denied.
  • when an entertainment event is cancelled and you’d bought tickets or really looked forward to it, what a bummer, isn’t it?… seriously, after all the infections that already happened in other mass gatherings, you’re saying it’s a nuisance you cannot go to more of these things?
  • when you insist on attending social stuff that you don’t absolutely need to do… you are adding to the potential risks for others who have no choice but to be out and about for bread and butter reasons, and some of these may be immunocompromised, did you think about that?
  • when you actually do get sick because you refused to practice decency, social responsibility and self-care… you are taking up resources that could have been better allocated to those who need it more, and you are adding to the overwork of healthcare workers.
  • when you are served a stay-home order by the health authorities and you have enough food to survive with, a comfy bed, a roof over your head, enough entertainment to last you years on Netflix etc, the means to socialise via social media, and yet you grumble because of the inconvenient incursion of being stuck in this slice of luxury… think about the people who are sick but have no means to stockpile food because they live on daily wages and nobody to reach out to when / if lonely (elderly cardboard collectors most probably have no laptops and social media friends).

Continue reading