When the struggle is brushing unbearable …

what makes us go on?

Fear? External pressures? Money? Guilt? Bloody-mindedness? Survival?

While the answer will depend on the person and the situation, the bottom line is – we have to.
The luxury of ‘not having to’ is so often dependent on also having the luxuries of autonomy and choice that most of us cannot conceive.  

My own history is certainly not unique, neither within the mental health nor the autistic communities. It is also not a tale of woe, but one of survival.

Reason to go on: Fear

When I turned five the permanence of home was replaced by the impermanence of going to Primary School and I had bouts of feeling “all irritable” as I called it, having no other words to describe the enormity of it. I have learned since that this can be central to childhood depression and I now think that it may also relate to autism. Whatever you name it, I believe that the two incidences were connected and that my feeling had nothing to do with leaving the ‘safety’ of home. I didn’t much like being at home – not because I wanted to be elsewhere, but because I didn’t particularly want to be anywhere. I hated the loud aggression when my sisters fought (8 and 10 years older than me); I was terrified of the ‘man’ in the airing cupboard, Mr Bumbly as I named the red plastic jacketed hot-water cylinder, and would run from the kitchen if I knew the cupboard door was to be opened; I hated the popular children’s song Sparky and the Magic Piano, the menacing chords issuing from the radio. To survive my terrors I spent a lot of time with my ‘imaginary friend’ Mr Organ, a teacher who was well-known to my family, I sang to myself, read, and collected worms in the garden. I also loved the shipping forecast, convinced that Malin on the Irish coast was a reference to me.

At school my fears were PE lessons that required a co-ordination and balance that I did not possess; the smell of school dinners, not just the boiled cabbage and mashed potato, that had me gagging; playground games that meant being in a team; and having to ‘work’ with other children on class activities. I found my comfort zones when reading to the Headmistress, Miss Webb, in her office, and knitting a garter stitch pot-holder square in lilac and lemon, both solitary in their way. I adored Miss Webb and once told her that I thought she looked better in straight skirts – this amused her so much that she told my mother what I’d said. I was 5 or 6 at the time and back in the 1950s I guess it was an unusual comment for a child to make to any authority figure, but I now know that this straightforward manner is common to those on the spectrum.

When I was seven my family emigrated to Australia and I was more than happy not to go to school for a few months, spending my days wandering the streets of Bondi Junction, getting to know 2 or 3 local shopkeepers who seemed to enjoy the company of a very quiet child happy to chat about interesting things. When we moved to the suburbs I struggled for a couple of years to fit in, finding refuge in a toy shop over the road from where we lived, or spending hours at the local library. One of my most cherished days was when I was issued a ticket to the Adult Library where I could use the reference section in the basement. I was still in Primary School and adult tickets were not usually issued until you were at High School. At home my books had reference stickers on the spine with a pocket holding a library lending card inside the back covers; each time I ‘borrowed’ a book I recorded it on the card. In our backyard I fed ants, fascinated by their precision and organisation as they transported their booty back to the nest.

Back to England and again starting a new school was put on hold while my parents decided where we would settle, but within two years I was on medication for ‘nerves’ and began having what I would now recognise as ‘meltdowns’. These escalated after I changed schools again, irritability morphing into uncontrollable anger when I would throw anything that came to hand. By eighteen I was keeping a bottle of vodka in my bedroom, and I once decided to use a metal bin to burn things. It also badly scorched a circle on my bedroom carpet, something I just hadn’t foreseen. Now I was reading poetry and prose, more especially writing it, and visiting the local library to get through. I’d walk into town to sit in the dimly lit cinema and watch the latest film, or wander in the churchyard, or sit silently in the church, not to pray but to be totally alone. By now I had my first diagnosis of serious mental health conditions, was put on stronger medication, and admitted to the local mental hospital – the former Victorian lunatic asylum – on to a women’s ward that still had a padded cell. And so began the merry-go-round of life in and out of hospital.

So, what was the Fear I was fighting? It was the Fear of going mad, of going into that padded cell, of never coming out. When I was 19 I was called into a meeting with my psychiatrist and my parents. I sat at the back while he told them of the probable outcomes for me: this stay in hospital would be my first and last; this was just the first episode of a lifetime of mental illness with regular admissions to hospital and little hope of recovery; that I would successfully commit suicide. Wouldn’t anyone be scared?

I hope you’ve found this post interesting, useful, and thought-provoking. I deal with the other five reasons for going on in my next few Blogs.
Please check them out. I’d love to hear of your experience and take on this.

Being creative is the mainstay of my life, and poetry, prose, and photography is where I express my deepest emotions. I also enjoy the challenge of design and create jewellery, fabric bags, and garments and home items in yarn. Diagnosed with ASD at the age of 68 after fifty years in and out of the mental health system, I now aim to explore and share my experiences over these years. Apart from blogs and short articles I'll share my life in my verse and images.

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