‘People often forget their manners when greeting me and others with facial differences, severe skin conditions and disability. They blurt out what they are thinking about my appearance – often rude and insensitive and often projecting their feelings of insecurities. I just want people to say hello before launching into these questions – though I’d prefer they didn’t ask me at all.
‘I’ve just written a book called “Say Hello” – a memoir and manifesto about living with a facial difference and being disabled. It has stories of my life until now, anecdotes from other people, and advice for engaging with people with facial differences, severe skin conditions and disability.
‘From reading the book, I want people to be confident in their own skin – no matter how different it might be, and to remember their manners when talking to someone people with facial differences, severe skin conditions and disability.
‘I’ve loved receiving messages from people with Ichthyosis (the rare severe skin condition I have), telling me they felt alone until they read my work.’
‘You go on Facebook and Instagram and everyone’s like shiny and happy and that would freak me out even more thinking, I don’t know what my life looks like. I would then evaluate my career and relationship or where I lived and there was just no certainty and it totally led to these really intense panic attacks.
‘It was this pressure to kill it at everything and that is what totally triggered it for me – this fear of the unknown and wanting to have control over it. What if I do take this job, then this could happen or that could happen and it was all just what if’s. I would just spiral – I wouldn’t do anything and I would freak out – it was paralysing.
‘It was a couple of years ago anxiety came in to my life and hit me like a freight train. I never expected it. I never saw it coming.
‘At my lowest point I wrote this poem called “We’re all going to die”. It was the first time that I’d had a sense of certainty. There was this one thing that could be guaranteed in my life and that was that one day, I’m going to cark it.
‘I realised that the only guarantee is death and everything is a mystery and that’s the beauty of life. So, why not go for it and why not take a risk? I’m going to die someday anyway so I may as well be who I really am.
‘On Friday November 17th I’m hosting “We’re All Going To Die Festival”. It is an amusement park for the soul. As an audience member you choose your own adventure – art installations, a film festival, music, panel discussions around fear and death and a lot of immersive experience. There’s everything from a death meditation where you actually imagine yourself not here on Earth any more through to a dance class where you’re encouraged to dance like you do in your own safe space in your bedroom.
‘It’s really about shifting people’s perspectives to just go and live life. It’s going to be a whole lot of colour and humour and we’re delivering it in the most fun way possible, because, why not?’
‘Two weeks ago I went back to the doctor and they said they’re not going to treat me anymore. They said I’d had enough radiology and enough chemotherapy and I still had it so I don’t know…
‘I feel quite active though. My lungs are good and my kidneys are OK. And I really don’t feel like it you know – to be saying goodbye just yet.
‘I was Preschool Cook at Australia Street Infants School in Newtown. I started off in 1973 only for a week or two while I filled in for someone. At the end of the next week, the Principal came down and said I can have the job. So I stayed there as Preschool Cook for 39 and a half years. In that time, I cooked over 7,000 meals for the children and I cuddled them every day.
‘I was made redundant in Xmas in 2012 – it was really stressful. Not long after that I was diagnosed with cancer.
‘They reckon I might last until Christmas but that’s about all. And that was a “might”. They said it depends on how much it grows and how much I deteriorate. Last week was pretty tough because I really don’t want to say goodbye just yet. I find it very hard.
‘I still get kids and adults coming up to me in the street. It feels very good. It’s hard to remember them because they change so much from when they’re little but they come up and say, “Miss Fay, I gotta give you a hug!” and that feels very good.
‘I don’t expect anything in return because you do what you have to do. I was working and everything and I did it all for the kids. I just loved them so much.’