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Lucy is my Angel of Clemency.

[This is not a Pity-Party Poor-Me post. I am voicing these thoughts because I hope that there will be greater awareness and understanding of the conundrum faced by autistic people who struggle to live and function within a system that is largely alien to our innate make up. It is not a grumble either. There is no “Us vs Them” anymore in my mind. I strive for Neurocosmopolitanism – a coming together and blending of minds – rather than to emphasise the divide.]

After two days of intense sunshine and heat, last night, it finally rained a little. We woke up to cloudy skies and a relatively robust wind. I have a love hate relationship with robust wind. On one hand, I love the refreshing feeling of a good cool breeze, the way it skims over my skin in a firm, passing yet continuous caress, but my auditory senses become increasingly stressed by the cornucopia of sounds that the wind stirs up. Rustling leaves are delightful, but my senses can only absorb and contain a limited volume – decibel level, frequency and yes, ‘volume’ as in capacity – before becoming overwhelmed.

This morning, I woke up to find Lucy still in my bed. She did not move to her own bed in the middle of the night. I guess she is still getting used to the new routine, which is, incidentally, of her own choice and not my mandate. I prefer sleeping separately, of course, so I was quite happy when she began migrating to her own bed, which is at the foot of my mattress (all at floor level, because I don’t want Lucy to hurt herself falling off my bed, or jumping on and off). She moved to her own bed for a little snooze, while I checked my morning emails on my iPad, and then I invited her back into my bed for a cuddle before setting off on our early morning walk.

The high anxiety set off in 2014, which developed into a noxious plume as the year wore on, is still hanging over me like a dark ominous cloud. Today is one of those heavy cloudy days, which I am told every Ph.D candidate labours under, especially towards the end of the candidacy or in the third year, that is if working on a strict timeline. It is one of those situations where one is not alone, but yet one feels incredibly and frighteningly helpless, isolated while swimming in a sea of camaraderie.

A classic Ph.D moment: “I am stupid. I will never make it. I will be a PhD dropout. I have no idea what I am doing. I am letting everyone down. My future is doomed.”

While I do share the same self doubt as reported by every single person who has ever done or is working on a Ph.D, I do not seem to share the other things they tell me about: boredom, frustration with lack of help from supervisors, loss of interest, and some even saying it was the worst few years of their lives. Not me. I have wonderful supervisors, so no problem in that area. In fact, I feel I am letting them down because I am not producing what I want to produce, what I know I can produce, due to being mired in the extraneous ridiculous bogginess-of-having-to-stay-alive.

Maybe it is my autistic mind at play here? I have not researched this phenomenon well enough to make a scientific assertion, but I absolutely love the life of research. “Love” is not even an adequate enough word to describe the exhilaration! These feel like the best years of my adult life, they remind me of the idyllic part of my otherwise difficult childhood, the place in space and time where I could contemplate, precipitate, discover, pursue and create within the safe confines of my Selfness, while relating to Otherness in a positive and constructive way.

Here, inside this research-praxis space, I revel in being Me, in just Being, without social-familial condemnation for this Beingness. There are differences, though, which present some pros and cons. My mind is far more empowered now, as a middle aged adult, but I am also more crippled by (real and perceived) social, practical and operational burdens and expectations. The internet provides far greater resources for learning and discovery than I ever had before, of course, but I now do not have the luxury of time to allow process to unfold gently and progress in a genteel manner for my mind, soul and body. The frenetic pace is extremely stressful on all levels, building up as my own body is deteriorating due to the inevitable aging.

Perhaps the greatest difference between then and now is financial funding. I am still awestruck with gratitude and wonderment that I received such a generous award this late in my life – a full Ph.D scholarship. I never saw myself as an exceptionally brilliant student, I always struggled with mainstream education and its demands and encumbrances upon my differently wired intelligence. (To this day, some parts of my family still scoff at me, but that is another story altogether.) I am immensely grateful, I live each day very consciously aware of this grace, but it is also the greatest financial struggle I have ever faced in my life. Back in the idyllic space in my childhood, I was blissfully unaware of the existence of financial toil. Even when I became aware of the Golden Cage that I was kept in, I had no idea that freedom of Being would come with such a price. It is one I am grateful to pay, but it is the most difficult practical challenge I have ever had to face.

The timeline is ever looming before me, turning up the volume of my mounting anxiety. Autistic people are not known to be brilliant at comparing and gauging ourselves alongside the mainstream Other. I have very scant idea of how I measure up next to my scholastic peers, and I have little desire to find out. I am not competitive against others, I am just frustrated with my own perceived lack of achievement within my own system of Self knowledge and expectation. Inside my mindscape, there are so many many amazing dynamic bits and bobs jostling for attention, crying for release, dancing impatiently around polyphonic fires – all waiting for some kind of development, clamouring for nurture and wanting to be given concrete shape, form and, yes, “life.” Yet, I am frozen. I feel frozen. Locked inside this conundrum of fear and anxiety juxtaposed with severely limited resources. I find myself worrying about practicalities outside of my research-praxis pursuit, and having to dwell for too long on anything that is not directly related to my work is in itself stressful to my autistic embodiment. The sheer monumental weight of the actual situation seems to crush and incapacitate me. I worry about money for Lucy’s medical care – she needs X-rays to find out if her condition is only just arthritic or something else more sinister, but this will cost around AU$800, an amount that I just do not have at all. At the same time, I have been putting off my own medical demands because I do not have nor want to spend the money on yet more stressful explorations that I know will either lead nowhere or lead to yet more financial burden. I am being pressed by my well-meaning specialist (who I can barely afford to see anyway) to seek yet another specialist for yet another test. All it means to me is yet another $200 spent + a very anxiety laden experience which I will need a few days to recover from, which means loss of money and loss of work time. (My doctors do not seem to properly understand this: if I am in a comfortable sensory environment and enabled and able to pursue my research-praxis undisturbed by stressful executive functioning demands, my body WILL be much much better! More frustration in this corner. Vicious cycles.)

I have good friends, they have helped me a great deal, but I do not want to push the boundaries of my friends’ generosity any further than I already have (and I am extremely stressed by the thought) . Yes, I know, every student who does not have the good fortune of being financed by family these days carries a huge burden of debt, but this is mostly unemotional, because the money owed is to an institution (usually the government?) rather than close personal friends. The added emotional element makes it excruciating for me.

I can go on. This perplexity is worthy of specialised research, really. I am sure many autistic individuals in similar circumstances have colourful stories to tell. But I need to draw my mind away from grief towards more constructive activity now. Lucy needs walking. And I need to continue with my executive duties towards Self. Tidying and organising my space, the eternal pursuit of sensory clemency, so that I can work and create without too many painful sharp objects stuck into my sense-scape. I wish I had a Jeeves. šŸ™‚ Ah yes, I am doing the grocery shopping this afternoon. My lovely new girlfriend who lives across the road is giving me a ride, which will save me the delivery fee and also give me the opportunity to grab a few bargains in-store, that are not available online. Grocery shopping is a huge challenge – because I need to work within a very tight budget.

Oh, yes, and the very thought of all this practical functionality triggers anxiety – because it means today is yet another write off, spent on doing things just to keep alive, and not on my work.

You see, I just want to work. Work. Work. It isn’t “work” to me, it is rest, relaxation, development, Becoming, Being – and that is pleasure, a luxury that I yearn for. I need to feed all those hungry Brain Worms, and in so feeding and watching them grow, I feed my soul, mind and yes, even my body feels better then.

Still. I remind myself, amidst the struggle, that I am really and truly happier now than I have ever been. Happiness does come with a price. This is the ironic price I have to pay. I will soldier on. Lucy and I. We are spunky gals after all.

Tally Ho, Bunny & Lucy!

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