poco a poco


The Bung-Up Budget Breakfast

The autistic life is not terrible. Just very challenging. In fact, some days, the struggle is monumental and overpowering. But the wonderment is so glorious and beautiful, the thrill so resonant, I will not exchange it for anything less – even if it is a 5% compared to the 95% of struggle.

Here is the 95% of struggle: Budgeting. Bills. Laundry. Cleaning. Cooking. Cleaning. Laundry. Cleaning. Cooking. Cleaning. A lot of cooking, especially for Lucy, because I am now down to one very meagre scholarship and thus cannot afford anymore to buy good quality ready-made treats for Lucy (eg. the wonderful stuff at Loyalty Pet Treats​). And of course, the autoimmune response to this stress = extremely painful, even excruciating at times, dastardly corporeal presentations you don’t want to know about.

Dear ‘longsuffering’ parents and siblings of autistic children who gripe and complain about our demanding parallel embodiments, and demand pity and sympathy for yourselves because you are saddled with our load of ‘rubbishment’: is it really so awful, living among people like me, who struggle incessantly and appear to ‘achieve’ so little? My goodness, some of us don’t even want to make eye contact or give you a hug!!!! And heaven forbid, we can also be bitingly brutally honest too – oh you call it ‘hurtful,’ and you stamp your little feet, toss your fluffy hair and demand that we learn to “say it nicely, please”! Yes. Yes. Yes. Perhaps it is terrible. We are like your proverbial sore thumbs, are we not? But… What is “little” or “much” achievement, anyway, in your wider perspectival realm? Someone once said to me, when I was a wee child, “It is good that you are so ‘handicapped’, because if you were not, you would become too great, given your talents, abilities and strong will.” That crushed my spirit. A supercharged turbo engine trapped inside the body of a rusty, rickety tin can – and here is a person of authority expressing how happy she is that it was so? Please do not view your autistic or other children with disabilities thusly. We can and shall thrive in clement spaces, gentle environments, nurturing atmospheres, and we will surprise you yet with the exquisiteness of our gifts to you in return. And to autistic adults who have survived the mill and are now living as independently as possible, you can take over your own parenting henceforth, you can still find better strategies for coping, appreciating and developing your innate beauty! Do not give up.

This is why I am on a quest to create harmonious and reassuring spaces – because the concrete sensorial realm is such a seriously crucial part of our functioning and/or non-functioning. 

What may be innocuous, perhaps even funny, to the general populace, can be decisively damaging to the autistic person’s fragile ecosystem. Who likes housework? Nobody. Social media is flooded with memes, all meant as hilarious jokes. But for me, there is nothing chuckle-worthy in these elements of discord: an unmade bed, little bits of grit under my feet, laundry piling up, cobwebs in the corners, a stain on the curtains, a strong smell in the kitchen after cooking, unwashed dishes, greasy surfaces, messy spaces – these are seriously heavy, ponderous and even excruciating blockages to my delicate functionality. And it really isn’t a joke when I say I need a Jeeves – it is a desperate cry of despair, because all these executive tasks take me away from my work, and it is inside my work, my passion, that I can truly find rest, relaxation, rejuvenation and achievement.

This is also why I do not want superficial, meaningless and drama-filled social entanglements. My friendships are serious matters, because every single moment of interaction is costly to me, and thus ever so precious.

Not every autist needs the same thing, we are on a spectrum, just as not every neurotypical person has the same needs. The key is to figure out these needs and address them as best as possible, for optimum functionality. I am trying to do that for myself, an impoverished Ph.D scholar in middle age, waging war with the elements, bobbing up and down among the flotsam and jetsam in a raging sea, longing to leave the surface and dive deep down where it is quieter and where my real life can unfold and flourish.

All this is Scheherazade’s Sea.

So… I am weeks behind my editing work for a friend’s musicology book. Feeling very embarrassed and stressed about this tardiness – I hate inefficiency. I am weeks behind in my work schedule for the exhibition, trapped inside the lack of funds to proceed with procuring materials, and asking for money is not one of my talents at all, it makes me very anxious and I feel physically sick asking for help repeatedly. Oh, and I have written nothing substantial for the dissertation – apart from notes and recordings. This may be the norm for some people (aka those who joke about procrastination etc) but it is overhwhelmingly terrifying and crippling to me.

But here’s the good news. I am alive. I have my Lucy. And I have good friends. Today is a new day. My Minxie Angel Hound has helped yet again with a good start to the day. What keeps me going? The pursuit of that 5% of unadulterated beauty: every little nuance in my Lucy, the amazing Endeavour of my passion – my work, and the belief that the work will make a difference, even if it helps one person, it will be a life worth lived.

Time to sally forth, Bunny and Lucy! A little at a time, from day to day, poco a poco.


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