What it's like

by Sue Goss

It's the knowing
that he has asked you -
but not knowing what.
It's finding something in your bag
that you didn't want
and haven't paid for.
It's feeling a child's fearful gaze
searching your face
for signs of normality
And not being able to tell him where it is
with the picture as clear as day
but no words coming.

Wondering how to say I didn't hear you,
yet again.
Hoping the little ones' love
will overcome fear
Feeling tired, tired with it all -
of it all. Tired.

It's pacing your days to what you can take
when others don't need to.
Choosing your food, your drink, sleep even,
so that tomorrow
perhaps
will mean fewer blank spots
than yesterday.

It's the having to apologise, more often than not
for making your kids walk to school.
"So why won't you drive her kids home then?"
"Their mother's funny."
I'm not laughing.

And carting the shopping home in a heat wave
them passing in cool cars
not stopping.
"She's a bit weird".
So would you be, mate. After thirty years of this.

But God - you know who your friends are!
All those warm, weird, funny, joyful,
brave, needing, lovely, way-out
people. Thousands of them! Of us.
People who can look straight at you
and love you. Become you.
Thanks.

Copyright, Sue Goss, Melbourne, 1995

At age fifteen, Sue was told she had epilepsy. With a number of seizures every week, her life at home and school changed dramatically. After an eventful struggle against this condition with the confusion and prejudice that surrounds it, Sue now leads a full life and is a well-known journalist and experienced author and editor. She has written a story of triumph over epilepsy "Ragged Owlet" and edited collected stories of people with epilepsy "Epilepsy - I can live with that!".

Epilepsy Association
1300 EPILEPSY (1300 37 45 37)
Australia wide Priority Call
epilepsy@epilepsy.org.au