Another high pain day. Nevertheless, stubborn resilience is a trait I am thankful to have acquired through the rigorous boot camp of growing up in an era where there was no such thing as neurodiversity. There are pros and cons to this, and I am lucky to have emerged mostly intact, but here we are, and I attack each new day with as much vigour as I can gather. Lucy is a great help, she keeps me going and persevering. So, the balcony was vacuumed and swept, as was the entire tiny studio flat and the rugs. I packed up some of Lucy’s things, duplicates that she no longer needs, to donate to other Greyhounds in need. Then I did some cooking. My plan is to cook enough for the next few meals so that I don’t have to spend too much time in the kitchen and can spend more of the precious commodity on my work. I am not a workaholic, I am just passionate about what I am doing, and I find immense pleasure and fulfillment in it, so why not? If it is a pursuit of pleasure, all the better, isn’t it? When I was a child, I remember not wanting to engage in ‘time wasting’ activities like sleeping, showering, even going to the loo – because these ‘ate’ into my time and took me away from my special interests. Mainstream school was the biggest body-snatcher of all, and to this day, I blame it for making me more stupid than I ought to be.

Anyhow, back to food. Well, there were two large slabs of pork which I had defrosted. I cut them up into two batches. One lot went into bak kut teh (Prima Taste mix, of course!), and the other lot into the oven, along with potatoes, carrots and the corn from the last Thoughtful Foods box. I had some of the bak kut teh for lunch, with noodles and steamed kailan (I bought two bunches and this one was becoming quite forlorn so I thought I’d better cook it now).

Some Aspies, who wish desperately to ‘fit in’ with neurotypical society, resent their own neurological make up. For them, being different is like suffering from an illness. I don’t blame them for feeling that way, because in the neurotypical world, where they desperately wish to blend in and belong, different-ness is a disease, it seems. However, for me, my quirky neurological make up has been a safe haven, a place where I can find respite, solace, comfort, imagination, inspiration, be creative, and just simply breathe. My battle, a lifelong one, one that will most likely follow me for the rest of my existence, is a painful autoimmune condition – a conscious nightmare, the chains that hold me back. Many autistic people do suffer from comorbids, and it seems autoimmunity is not uncommon. I wonder how many of us share a common perspective, wishing that the physical pain would go away, while embracing our unique perception and perspectival existence? I spend a lot of time curled up in pain, in bed, thinking about how much more I can achieve were it not for that monkey on my back. These days, my biggest comfort is the Angel in My Bed – Lucy. Were it not for her, the days would be less easy to attack with such vim and vigour!

OK, enough prosaic elaboration. I am tired. So, before I beetle off into my reading, doodling and notes, here is a little poem about pain – the perennial stalker, lithe and persistent, that insidious little monkey creature. It is a proprioceptive sensory poem, try to dance along with it – can you feel the monkey now?


monkey on my back

shake, shake, shake





monkey on my neck

wriggle, wriggle, wriggle





monkey on my leg





monkey in my head

jiggle, joggle, wobble





monkey on my back

shame, shame, shame

your name

your name

your name




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