it is well with my soul

This post is inspired by today’s piece on Emma’s Hope Book about sensory assaults. I love Emma’s thoughts, and Ariane’s insightful and empathic writings. They bring me much comfort, and a feeling that I am not alone in this grand cosmic struggle.

Thunderstorm through the night. Roaring vacuum cleaner outside. Yapping small dog next door. My floor is littered with tiny particles of dust, spicks and specks that get caught in my bare soles, they feel like shards of cutting glass to my hypersenses. Then there is the whorly-whirly mess of things, little pieces of work material, scattered around my home, screaming out to be organised but I am submerged in physical fatigue. The perennial chicken-and-egg conundrum, is it the autoimmune or sensory overload that is triggering these physical symptoms? Head spinning. Eyes blurring. Shadows and translucent blobs dancing around the perimeters of my vision. Dull throbbing rhythmic pounding punctuated by sharp stabs of pain. The silent scream slowly grows. I need to work. I have to work. I yearn to work. But I need a sensorially clement space in which to work. And there is no respite. The volume knob is missing. It is a very very overwhelming world outside, and the insidious assault heaves, froths and seethes, seeping through the cracks, creeping inside, taking over my little sanctuary. Every day is a battle. But some days are better than others. Today is not a better day. It is a “Fight the Elements to Survive” day.

For the noise: No. I cannot wear earplugs or headphones. I have them. They hurt too much. I know many autistic persons can and do use these aids to help mitigate the effects of sonic overload. Unfortunately, I cannot bear the contact pressure or the white noise that is trapped inside my auditory channels. I also have a need to hear sound clearly. Muffled sounds make me nauseous and dizzy.

About the cleaning and organising: No. I cannot afford to employ a cleaner. I need a Jeeves but no, I cannot afford one. I do have a very kind friend who will come and help me next week, so I am hoping we can get things done before I break down completely. At least create a semblance of order, enough for me to be able to work inside this space. I desperately need and want to work. It has been too long. I feel as if parched and dying of malnutrition, not being able to find solace and rejuvenation inside my work.

Then there are the everyday innocuous but grating things like patterns in the carpet, smells in public places, grocery shopping on a tight budget, social obligations, and just generally treading water in this vast ocean filled with flotsam and jetsam of neurotypical chaos, systemic demands and awkward confluences.

It seems everything makes me nauseous and dizzy, and variously sick / unwell?

You’ve heard it often. But it is true. Pretending to be ‘normal’ – or should I say a ‘regular person’ – is the added heavy cloak many of us so-called “high functioning” autistics / Aspies have to wear. Especially those of us who have to scratch out a living alongside everyone else. No welfare. No concessions or special benefits. It is survival of the fittest, fastest to the finishing line, strongest takes the spoils. The Elephant on the Head. A crown, it signifies “achievement” to the world, a dichotomous juxtaposition of “superior ability” and silent, secret, excruciating disability.

I grew up variously bemoaned as a “downright nuisance,” labelled a “worry,” berated, mocked, even physically beaten, for this odious trait that blighted the idyllic landscape of familial order and tranquility. I even lived with a copycat who degraded every symptom with a, “But Me Too!” declaration, then proceeded to use every ounce of strength and ability I had for her own benefit.

The next time someone tells you they don’t wish to walk from point A to point B for any reason, please do not mock or tease. Or if a person you are with suddenly wishes to leave a space, please do not press them to stay, and please, do not call them derogatory names – even if said in jest. It is not funny. I am guilty myself of this mockery – of myself – I have allowed some of my friends to call me a “princess” and laugh at my “poor little rich girl” mannerisms. Why? Because it was just easier to wear this mantle than to explain to an unempathic neurotypical world the truth about my existential reality. Why? Because I am so good at the Neurotypical Stage Act that nobody I grew up with can easily understand my debilitating disabilities. After all, in the mind’s eye of the non-hypersensory world, PhD scholars just do not have difficulty with simple things like these, do they? It must be a false affectation, an attribute of a missish female grown from a privileged background. How do I change that perception? I do not have the energy. I need all I can muster to focus on my own survival. So I plod on.

Yet, I refuse to complain and bemoan. This is not a rant at the ‘unfairness’ of the world. There are many who are facing far worse circumstances. This is a reality post. A literal, microcosmic description of my little parallel existence. I am grateful for the friends who help me along the way. They provide the essential tools for me to wield, so that I can fight on, better equipped.

And I have an Angel by my side. Someone to Watch Over Me.

My life is good. Today is a new day. Oh, the vacuum cleaner has retreated into the wispy haze of the dawning day. Yes. Time to walk with my Angel Lucy.

It is well with my soul.

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