Health is a fragile thing in my world. Not only do I live with disabilities, but I am surrounded by people who live with disabilities and health issues. At the end of April my support worker was diagnosed with cancer and had to have immediate surgery at the start of May. This meant that they were out of action for two months whilst they recovered. My sister’s partner was also diagnosed with cancer around the same time and has since had surgery and is undergoing treatment to combat the spread. My aunt has also had surgery to remove cancer.

Like a locomotive, the months picked up steam

After a busy start to the year, my plans died down somewhat in March with only one photography adventure, but what an adventure it was.

January and February are always busy months for work, and this year was no exception. On the 17th of January I was given the honour of shooting the rehearsal images for Ben MacEllen’s new play The Placeholder. Funny, sharp, and deeply human, The Placeholder explores how feminism, friendship, and chosen family collide – and how love is tested when those closest to us change in ways we never expected. I originally met Ben in 2022 through the Midsumma Pathways mentorship for artists with disabilities and we’ve been mates since. Ben is a phenomenal writer and if The Placeholder ever comes to a town near you, please go see it.

Life has been quiet over the last two months. I cracked a tooth and eventually, due to pain, had to get it removed. Luckily, I was able to crack into my savings to pay for both the endodontist and the extraction.

September started quietly with flu and a visit from my brother, whom I hadn’t seen for about ten years as he had been living in the UK. I was nervous to have him stay as we had only spoken over zoom as a group with my sister whilst our ma was in hospital dying. The time before that was a few Christmases’ past where he had been drunk and deadnaming me and misgendering me. However, the visit was well received, and we had lots to talk about and share. Having a parent pass sobers you and apparently my brother has been abstemious for some time, so he seems to have matured a lot (he’s seven years younger than me).

They say start as you intend to go on, and I had every intention of starting this blog post in January on time. Alas, the overwhelm was real with all of the events I’m about to talk about. I found myself sliding into old territory of not getting out of bed/showering/napping even more than usual around the editing of events.

Can a person living with multiple disabilities make new year’s resolutions to be a new person? I believe so. There is always an opportunity to do and be better than we previously were, even when our bodies and/or minds limit us in how we go about these changes.

But before I get to January, there’s the full month of December to get through! Whilst on paper there are only three events to cover, there are multiple parts, and we begin with an adventure to Piggoreet with my support worker on the 11th Dec.

As I said, this was a less busy month than what I have experienced in the past. I’m not mad about it. In fact, it was exactly what was called for in my hectic life. I need to practice slowing down. My daily rests are a great start, but they are the tip of the iceberg of sorting out a comfortable living. I grew up with the “head down, bum up” mentality of the working class British, and as a British, my father taught me not to complain about it. I have been working on this. Whilst I do not complain out loud to others, I certainly have stern words with myself these days and ask myself whether or not working so hard is a value add to my life. I’m trying to practice the art of not giving a fck, but decades of poor life skills have made it a hard lesson to learn. Once again, I leave you with this – be kind to yourself, on both the easy days and the hard days. Take nothing for granted.

Michael drove us to Canberra for their large family get together (about 30 of us, all immediate family) to celebrate their parents 50th wedding anniversary. Whilst I’ve been married, I consider that an anomaly as I do not believe in marriage. However, to see two people working hard to stay together for so long and genuinely love each other after such a large amount of time does impress me. I realised something a few months ago about my identity

At last chat with my GP, we discussed me possibly having Restless Leg Syndrome brought on by the trauma of suddenly losing my ma. However, I am due for another appointment on Monday as something turned up in my bloods. I am hoping this will bring relief to the chronic pain I've been suffering for the past two months.

Despite the trauma and the grief and the pain I have been busy, as is my subconscious want.

There was no blog last month due to the sudden unexpected passing of my ma. My ma was my best friend, and I shared everything with her, so now to be going on adventures, stretching myself as a human being, and going through so many things, it is hard not to want to share them with her at every opportunity. There is a large gap in my life now that nothing will be able to replace (and believe me – alcohol isn’t a solution).

Even ten years after my diagnosis of acquired disabilities, I am still learning how many spoons each action will remove from my wares. This calculation is not linear either. Variables, such as the type of crowd (rowdy hooligans, verses appreciative guests, etc), the weather, what I have done prior, and so much more, all factor into the loss of spoons. I’m still forgetting that I cannot do all of the things. Now, however, I am being kind to myself when I make these errors in judgments and try to rest as soon as I’ve realised where my levels of pain and fatigue are at.

With no rest for the wicked, Michael and I flew to Lutruwita on Friday and spent Saturday driving from Longford (near Launceston) to Somerset (near Burnie). Saturday we went chasing waterfalls: Liffey Falls, Upper Preston Falls, and Delaney’s Falls. Between Liffey and Preston, we took the time to walk to Tulampanga Lookout and I am so glad we did. I now urge everyone to visit this lookout to give perspective over how insignificant humans actually are in the grand scheme of things. You can feel the ancient call of these cliffs, the area being a sacred women’s space for the local First Nations people – the Pallittorree.

I need to clean the lens all the time. My workload has been bogged down trying to remove dust spots! I did some Milky Way photography with it which I am not looking forward to editing. There’s a tip for every photographer – know your equipment and make sure it is always clean before every use.

The Summer months, January in particular, is always a busy time filled with travel to see family (this year we drove to Yass to spend time with my sister and her three children for Christmas), and photography gigs and adventures. (Profile image by Tom Noble)

Hello friends, I bring you tidings and good news this blog post, which is a pleasant change from the previous. December can be a mixed bag of emotions if you are part of the rainbow community, with large numbers of us estranged from family (not to mention the violence).

Even though I am better now at scheduling in naps throughout the week, I am not used to resting, to allowing myself that luxury (even the word “luxury” implies rest is laziness). I am not as patient with myself as I would like, and I compare myself to “successful” disabled people within my immediate (and further afield) circles and ask myself “why aren’t I doing more?” All the while knowing that “success” is a predominantly capitalist construct pertaining to material wealth and not, more importantly, spiritual, and emotional wealth.

My message to y’all this blog post though is that you must continue to fight for what is right in the world, but occasionally take a break for self-care. You are useless if you collapse. Pace yourself. Monitor yourself for signs of cracks and love yourself. Stop for as long as you need, talk to loved ones, or if they too are frazzled, speak to Lifeline or some other professional service so that you can get back to the long fight for the wellbeing of our communities and planet.

My belief is that the bigger I can make this gala, the more people will talk about it, therefore the more people will come and see and read what it is I am trying to achieve. Please help me reach my target because we all need this. We all need a sustainable planet. We all need community.

My question(s) for this blog is this: what price are you willing to pay to save the world? At what cost are you being silent? Will you be a leader and join me on this journey?

My body had been sending me alarms for months, which I had spoken with my counsellor about, but had done naught else to remedy the situation. At the end of the blog, I asked “Am I following the right path for long-term sustainability?” The short answer, dear readers, is “No!”

Image Description: B&W image of a large single rock out in the sea. As this is a long exposure both the light sky and slightly darker sea are smooth and free from most distractions. On the rock are white birds.