The Story of Me

The Story of Me – Fatigue

The Oxford Dictionary describes the word fatigue with terms including:

  • exhaustion
  • extreme tiredness
  • reduced efficiency
  • lessened response/enthusiasm
  • weakness

and due to:

  • exertion
  • prolonged activity
  • overexposure
  • repeated variations of stress
  • menial tasks

Various dictionaries attribute the origins of the word fatigue to French and Latin words meaning to tire out and to satiety/surfeit (full or to excess, replete). We hear the word commonly used in relation to battle fatigue. Though the battle is not war as such, caring is a battle with the mainstream, systems, conformity, presumption, prejudice, invisibility, isolation…and this is an incomplete list.

 

As each individual is…well…an individual, but with similarities to other humans, so is each family, group, community, school, medical facility, government etc.

As a unique human, those things which fatigue me may not be the same as that which fatigues you. We may have some common struggles, and I may have some in common with another but that I don’t share with you.

 

Though this is by no means the only thing that I am fatigued by, forms and documents are exhausting just by the mention of them. Prolonged, overexposure; repeating the same information in different ways, on different forms, for different organisations, every visit/year; meniality; repletion; reduced efficiency and enthusiasm; exhaustion.

Some forms and documents have added stressors to them – applying for funding (asking others for financial assistance with my family, something I feel I should be responsible for); requirements to continually speak of my child/parent’s deficits; re-documenting a permanent, congenital condition…repeatedly, paying medical professionals, getting to appointments etc…

But forms generally now fill me with dread. The words I tell myself can be a help or a hindrance. For example, I can (even sub-consciously) tell myself this will take a lot of time, I will be required to get further medical/educational/allied health documents etc. or I could tell myself that this won’t take long and will then be out of the way, I have done these before so I know what I’m doing. But the efficacy of this process hinges on various contributing factors, which will differ each time I have forms to fill out. How tired I am already, how many forms I have had to fill out in recent days/weeks, do I have to work or attend meetings at this time…you get the idea.

 

Forms and paper work are one of the most difficult tasks for me to complete, simple as they may be in and of themselves (appointments for professional support documents notwithstanding).

For you, it may be other things like:

  • social outings
  • education settings
  • hospital/doctor visits
  • family get-togethers
  • a visit to the hairdressers

The list is endless, and unique to each of us, our children, family and season of life.

 

I have Form/Document Fatigue. What fatigues you?

 

2/10/2018

 

The Story of Me – Begin…

I could start at the beginning. I could pretend I know my ending, and work backwards. I could give you the bleached version, the raw version…

Welcome to the as-it-comes ‘story of me’, and I’ll begin where I am.

I am at graduation. Graduating from seventeen years, three children, and parenting through school (including my own first academic qualification).

Would I do things differently? Well, that would be to pretend I could be different to who I have been at any given moment. So, if I had my time over (pretending again), I’m guessing it would be exactly the same. Are there things I regret – conversations, actions, reactions, beliefs, values? Of course! Which shows I’ve grown; reflected; learned; processed; become more wholly myself. Not arrived, but arriving.

 

One of the most painful paths of my journey has been going through the school years as a parent (and I didn’t much like most of my own school years). A parent with children who experience the world outside of the mainstream.

There was some seasonal epilepsy, which was met with compassion. We brought with us allergy and eczema, which was largely dismissed, or used to shame and control. Blindness and emotion, though, were largely to be feared, seen as a threat, and handled by protecting ignorance, the status quo. Essentially, self-preservation of staff and systems (even outdated/non-recommended systems) – at the expense of…my children. Not just their academic education, I had been learning how I would facilitate that since before they were born anyway. But their sense of self, individuality, place in the world, contribution to the world, belonging in the world, was undermined at almost every opportunity.

 

To those of you who embraced my children (though few in number), drawing them into community and thereby being changed and changing yourself as a result of being in each other’s worlds, thank you.

Thank you for learning to do and say and model differently to your preferences, so that my children could learn in the ways they needed to. Thank you for engaging with their ways and their person – especially those of you who saw each of my children as their individual selves. Not as one, identical. Thank you to the ones who naturally did these things, and thank you especially to those of you who responded positively to change when challenged by my children.

I thank you because you are/were rare. Like an endangered species, hard to find, at risk of extinction, often being slowly extinguished by systems. Thank you to those of you who are like my secondary school teacher sister-in-law, psychologist/teacher uncle, and primary school teacher/principal uncle; those who are like my mother, who intuitively tuned in to the individual; individuals like my father, who learned to listen and learn from others (experimenting, modelling and teaching what he learnt), and standing boldly for those who had no voice.

 

Sadly, to be a ‘shifter’ in a mainstream system is not easy, painless, comfortable, or the way to make and keep friends easily.

So, kudos to those who will shift and be shifted for the benefit of the other, and consequently for the benefit of the whole… us.

1/1/2018

More Stories to come