‘I was in the bushfires on New Year’s Eve down in Batemans Bay. After the fire went through, we ended up in an evacuation centre. I found myself in a situation where I had no control over what was happening to me, it wasn’t safe for me to return to where I’d been, and I couldn’t leave. Immediately after the danger had passed there were some basic services that came in to ensure we had food, water and accommodation – even if it was the floor of the town library which turned out to be one of the best sleeps I’ve ever had after that day!
‘When the pandemic hit, I started to see what was happening in hospitality with so many people losing their jobs one by one overnight.
‘I had just closed my restaurant late last year so here I was with this premises, and I thought, there is something I can do here – let me see if I can raise some money and get some people to help me.
‘For me, it’s kind of been this reverse experience. I thought I can provide part of what I received during the bushfire crisis in this scenario by just using what I have here and what other people will support me with to do this.
‘We’re doing free food every Friday for anyone who needs it. There are many industries where people have lost work in a short space of time – hospitality, retail, travel, education – there are so many sectors that are affected. We have beautiful volunteers who prepare and serve the food and we have an incredible amount of support from suppliers.
‘There is this whole interesting idea of charity versus community. What we see here is community coming together to share the abundance that exists within that community. It’s interesting because I think people might not feel like they can take charity or they qualify for it… but everyone at a time like this, and actually always, should be able to tap in to the resources of their community to help them when they need it. That is like the ultimate equation of abundance – there is always enough.’
‘I’m an event coordinator so our industry is completely gone. I’m concerned for the future because I don’t even know if we’re going to be able to have events anymore if we don’t have a vaccine.
‘It’s scary because I’ve been in Australia for 7 years. I came here with all the energy to start a new life. I would never have imagined I would be going through such a situation. I never was scared of working or learning something new. And I wonder, where is this person? I need to find it. I feel like I’m drowning. Every time I try to hold something it’s just gone.
‘I’m sad because my friends are losing jobs and they have nothing. I have a lot of international friends and they are scared. We feel lonely because the government doesn’t help everyone. I understand, you need to look after your citizens but at the same time all these people who came here and they support the country in some way – paying taxes and everything – and now they are left with nothing and they can’t even go back to their country.
‘I just wake up every day thinking that it’s a nightmare and I want to wake up from it.’
‘We met this gorgeous young man – he was from overseas. He told us he came last night and took lentils from the box. He then asked if he could take more and we said, “Of course!”
‘He told us he literally had no food at home. I didn’t realise that – if I saw him in any other setting I would not have guessed.
‘We’ve created the Newtown Blessing Box – a community street pantry where people can leave pantry items or even toiletry items, for whoever is in need. If they can give, they can give, and whoever needs it, they’re more than welcome to help themselves to as much as they like.
‘Creating the Newtown Blessing Box has made a massive impact to my own personal mental health. I own a business with my partner. The business has slowed down so instead of only focusing on that, we decided to look around at the world and see what else is going on. We saw asylum seekers making their way to the Asylum Seekers Centre and they mustn’t have known the centre was closed. They were going there for food and we realised they would have nothing.
‘Coming out everyday to check on the box, make it neat and presentable and to read the notes that people leave, it’s exciting to look forward to. Everyday someone leaves a note and there is something new. We get really excited and wonder who each item is from. We see our neighbours do a dash and put something in. Those interactions are really important and beautiful and heart warming and I now know my neighbours. It’s really made a positive impact on our mental health.’
Visit the Newtown Blessing Box on the corner of Bedford and Station Streets in Newtown. Give what you can and take what you need.
‘I actually feel quite guilty because I’m having such a great time travelling around, living in my car and meeting all these lovely people. Everybody who stops to talk to me is a nice person. Not all the nice people stop. Sometimes they don’t feel comfortable approaching someone sitting on the street and some of them are busy and that’s fine.
‘I try to make sure that people know that I’m alright. I actually make enough money selling my scarves to get by.
‘One thing that’s changed over the years is that we’ve become more of a cashless society. I’m thinking of going to Officeworks and seeing if I can get one of those portable EFTPOS machines but I have to upgrade my phone. That’s my problem. I’ve got a stupid phone – all it does is make and receive phone calls and send texts.
‘It’s alright though. One of the things I do is I’ll suss out if there is an ATM around the corner. That also gives them a bit of a cooling off time.
‘I’ve actually said no to a couple of people because I can see it in their eyes, they’re buying a scarf out of pity and I don’t want that. Their scarf will be put in a drawer and not worn and not loved. I want people to wear them and enjoy them. If they’ve got to walk 20-30 yards and go to an ATM and get money and come back that gives them thinking time and they might think, ah, I don’t want that and they can walk the other way and not have to walk past me again.’
‘I started transitioning when I was 17 – it’s been about 5 years. I grew up on the Central Coast which has a very low trans population. There was probably me and someone else that was known for it in the gay community. Even the gay scene was really low so it was pretty bad.
‘I went to a Catholic School as well. I came out as a lesbian when I was 14 at the school which was not my best choice. I dropped out of high school because I went in to hospital for mental health reasons when I was about 17. And then I decided I needed to transition to a man and start doing the right thing for myself. There were a lot of members of my family who were quite actively not alright with it.
‘It sounds really weird but I didn’t think she [my partner] knew that I was trans because it wasn’t brought up. From the very beginning, there was no issue whatsoever. We’ve never had a problem with that. But on the Coast it was always something that was raised; there were always people talking about it.
‘When we met, she just didn’t give a second thought to being eccentric which helped lessen the anxiety about how people looked at me or how I behaved. Was I feminine or masculine enough? None of her friendship group even addresses that. They’re all so confident. I think her confidence has really rubbed off on me.’
‘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.’
‘I often have to deliver news of a cancer diagnosis to my patients. You have to break it to them in a way so that they understand what exactly they have. But at the same time you have to be mindful of how they would feel about the new diagnosis and be compassionate about what they would be going through psychologically.
‘The most important thing is to reassure the patient that it is a journey and that usually it is not black and white – it is usually a lot more complex and there is a lot more to it.
‘There is always hope. No matter how bad the diagnosis is there is always something that we can offer. I learnt this from Chris O’Brien – I was his intern – he told me a little bit about these things. He was saying never let your patient lose hope. At all times the patient knows there is a plan and there’s a path and we’re always with them on that path. It makes the journey a lot easier for the patient.
‘But there is so much that is unknown. I’ve seen patients that I thought would die very soon and I was surprised that they lived a lot longer. And the opposite also happens where the patient that I never expected to deteriorate, did. Medicine is not 100%.
‘You can’t predict anyone’s future. You just do the best the can and you put on a good fight. It’s usually a journey that the surgeon and the patient take together. Sometimes every now and then you lose the battle to cancer but the most important thing is that you provide the caring environment for the patient and you provide enough support so that they can at least go through this journey and be comfortable with it, not lose hope and not be scared. Fear of the unknown is the worst thing for a cancer patient – them saying, “What’s going to happen to me? How am I going to die?”
‘As surgeons we try to push the envelope as far as we can to tackle some diseases that we might think are incurable. We usually try to give it a good shot; for the suitable patient of course. You never try to shy away because you think you’re going to lose any way. You just go for it.’
‘Working in cancer care makes it harder – I get attached to everybody because I like people. You always get that one or two that you just get attached to a little more and if anything happens to them, it just affects you that little bit more. It gets hard sometimes and you know exactly when they leave here what the next steps are going to be.
‘It’s hard and I try not to but as a human, I get attached to everybody. That could be my downfall.
‘Sometimes I would go and see patients when they get moved to palliative care but not always. I don’t go to funerals of my patients unless I’ve known them for a very, very long time. I’ve been to about 3 or 4 when I’ve been invited by the family but I don’t routinely go to them.
‘The most rewarding part is just the patient saying thank you – that is the best part of it. The reward is knowing you’ve helped that person – not just them but their family as well.
‘I always say to people to do what you want when you want because you never, never know what happens tomorrow.’
‘It’s a tough place to work but a very positive place even though there is this concentration of grief. I hope to bring to someone like Maria, something that she would get in no other hospital which is that support and that love which comes in many forms – kindness, compassion, support and lot of things we take for granted – like our art programs.
‘The fact that she can just wheel herself down and play on the piano or join in on what everybody else is doing – listening to the music and the choirs. It’s like its own little world here – a world of kindness and hope if you like.
‘I think that’s what I bring because I’m a reminder of what Chris went through and what we as a family went through and so I totally understand what everyone else is going through.
‘My role as Patient Advocate is a way of supporting the vision which is patient-centred care and giving people hope.’