Written by Vanessa Anderson
I promised someone a while ago that I would pen this article. It’s telling delayed because I truly did not know where to start. For I, could not possibly give you, the reader – an accurate account of the experience being that I was not an active participant in the story.
Then it occurred to me that reason and accuracy have no part in its telling. For reason you see is neither fair nor factual – not in this account, and accuracy, well, being accurate is neither here nor there when it comes to watching someone you love suffer.
And you, you may be a combatant observer of suffering in your own world, unsure of when, where or how to shine your light so that those who suffer can find a way back to themselves. It may well be that this is for you, as much as for me, is a tale worth knowing.
When you can neither see, touch nor hear the cause of someone’s distress – but rather you sense it like an oozing web that threatens to engulf, cover, hold them down and smother them. You see it hiding in the shadows, fearful of the light, you sense it is sneaky and deceitful, it changes moods and appetites, it changes personality and sleep is a constant arms-length away. Yet you cant name it, you cant calm it and it feels so unfair, so unjust and misplaced.
When a diagnosis is a prying, meddling, scab-picking torment, like a gnawing woodworm carving holes into their being and after all of that it offers little relief or lasting solution. When all you want to do is rage against it, cast it back and banish it from their world and all you can do is wish for them a quiet calm so they can come back to themselves, even for a moment.
Around 7 months ago, you turned 21 years old – I was there the day you were born and named as the ‘first born son’ derived from the Siouan (Sioux) language, Chaska – brave and strong. Names are words, words spelled – spelling is a casting of spells – the name is certainly fitting.
You have shown us a world we may never have known had you not been born brave enough to bare the seizures that take you from us at times.
The malfeasance of time and practice aside, you question ‘why you’?
No answer came, it likely never will.
You turned 21 years old last October and for the longest of days and the endless nights to follow – you got lost in darkness, cloaked in chaos and anger, locked behind a shroud most could not see past, let alone unveil in the hope to set you free.
You became opaque and we became obtuse. We could only flutter around like moths to a flame, trying to catch the light as it tried to escape from within you, like flour through a sieve, inane, useless.
You ask, ‘why you’ – I can’t fathom a reason or rhyme, I couldn’t come close.
Yet through it all, what resonates sounds something like ‘Thank God’ – whatever that means for you. You are because we are – your family, by soul or by blood.
You are recognised, you are loved, you are a light the dark tried to blow out – it didn’t know how many WE were, that fluttered and floundered around your flame, catching your light and sending it back to you. It didn’t know that we, in soul and blood – would hold the space for your family to work their magic around you.
It didn’t know how strong your Mother was or how fiercely she would fight.
It didn’t know the army of light she had seeded or the determination of their intent. You are because we are – here for you.
The world tried to break you, now show it what you have become.
The world tried to break you, now we know what we are capable of.
We are all here because others were here for us. Others before us, others after us, others because of us.