‘On the last day we put him in the sunroom and we listened to Triple J and talked and that. I went home about 6 o’clock at night and we got the phone call at 4 o’clock in the morning and were told to come to the hospital. The nurse stepped out to stop us from going straight in to the room and told us. I got to see him and I gave him a kiss and all that and it was very peaceful but I wasn’t expecting it. It’s weird because there were other times during his illness that I was expecting it. The hardest things at those times, like when he had pneumonia so bad he was in intensive care for three weeks and had tubes down his throat and that, I had to realise that you can’t keep them alive for yourself. You’re not the one lying there with tubes down your throat – you can’t expect them to live for you. So I actually said to him, and I don’t know whether he heard me or not, I said, “Don’t stay alive for me.”

‘We were together for 15 years and 9 months. He made me who I am today without a doubt. And he made a lot of people. I think love, it can get you through things but also it’s very, very special. I don’t know that a lot of people will have what Goose and I had. Luckily, at the time, I knew I had it.’

‘They (Department of Education) told me in later years I wasn’t to hug the children and I said, “Well, it will be a long day before I can’t hug somebody.”

‘I can’t stop children from coming up and hugging me. I said that I won’t stop hugging them. I never did.

‘You know all children, doesn’t matter which ones they are, they all need love. You have to give it to receive it. I doesn’t matter how much their mums and dads love them, you can always give them a little bit more because everybody needs love and you can always do with a little bit extra of that.

‘Children are so hungry to be loved. That’s all most of them wanted – to be understood and loved. Because that’s the real main thing in life. Nobody listens much you know – they talk but a lot of people don’t listen to you, you know?’

‘It was a bad time for me but things have come together since I moved here and it’s been going very well. It means a lot to me to have this place because I’ve stayed in a lot of places and it hasn’t gone too well. It’s really good now. I’ve had a lot of help from Newtown Neighbourhood Centre and I feel like I’ve got a good chance of doing something. It’s stable here and I just want to keep on doing what I’m doing. I hope to just keep on trying to make things better.’

‘My diagnosis at 27 changed my life dramatically. I connect all these things back to what I bundle up as “below-par”. I’d do weights and not bulk up. I couldn’t run as fast as other people. Knowing you are somehow physically different to others, made me feel really inferior and insecure.

‘I looked for various ways socially to compensate for that. It led me toward a lot of really negative lifestyle choices as far as being reckless. Getting diagnosed was a huge relief – it turned all that around.

‘I have a degenerative neuro-muscular condition called Inclusion Body Myositis which means my muscle cells don’t regenerate. Effectively I’ve got a slow, degenerative, muscle-wasting disease. It started off in my legs and it progressed to my arms. It’s slowly going through every set of muscles throughout my body.

‘I’ve had to face so many physical and emotional challenges. It’s made me a lot tougher and a lot stronger as a person. It’s made me a much nicer person than I used to be in my 20s. I’m nowhere near as selfish; I have a different perspective on life. I know what’s important and what’s not. I think I do. It just put me on a different path.

‘Before I was diagnosed, I was working in hospitality. I’ve always done really physical kind of work but I really physically started to struggle with all of that. Then I decided that I wanted to study and did an Advanced Diploma of Fine Art at TAFE followed by a Bachelor of Fine Art at the University of NSW.

‘I was fortunate enough at the start of 2016 to be awarded a grant through Accessible Arts which is designed to support me as an emerging artist in a sustainable arts practice. It’s helped me buy art supplies and an electric easel. It’s helped me build a website and employ a videographer to do a short 3.5 minute documentary about me and my practice. It all culminates in a solo exhibition where I produce 20 paintings. It’s designed to sell some work and generate some income so that I can then be funded to have a sustainable art practice for another year and have another show.’

‘My dad had a big heart attack. I was 13 and I had to drive him to town in the car. I’d never driven the car before but I’d played with the pedals and the gears while it was in the shed. After the heart attack he couldn’t drive anymore and I had to drive my mum around. It was war time and a lot of kids had to do a lot of things they’d never done before. I used to have to take mum to the town so she could see dad in the hospital. I lived in a small town of only a few hundred people so I drove under the supervision of the town policeman until I was old enough to get a licence.’

This story and image featured as part of a series highlighting the housing affordability crisis in Sydney. Although he had six children, he lives alone in a converted garage (the room was not much bigger than his bed) in an old terrace house in the Inner West.

‘One of my biggest challenges in life is just dealing with people. With some people it depends on how they’re day is going as to how they approach you as a person.

‘The way I was brought up though means that I just don’t really care about it. You don’t need everyone you meet. There are so many people in the world that if someone puts you down there are other people that can bring you up.’