Image description: It is a photo at the front we see a road and then lots of very green grass with a big tree in the middle and a few smaller trees towards the front. Off in the distance we see more grass and a line of trees. The sky is filled with fluffy grey clouds.
2017: Went on a holiday for a month. First real holiday in years. My partner and I had been saving for it for ages. We came back from the holiday to find our house had been trashed by our house sitter. One of my ‘friends’ told me it was my fault for making for bad choices around who I had as a house sitter. Then I lost my job and in turn my 17-year career, due to workplace restructure. I had trouble working out what to do next because there weren’t many jobs of my level being advertised and I was realising that I couldn’t do much because of my health and this was terrifying. I didn’t know how my partner and I would manage financially.
2018: Crashed into a metaphorical wall, health wise after about 13 years of gradual decline. I was diagnosed with CFS/ME, because there was nothing else left to try and ‘fix’ with my health. I couldn’t be ‘fixed’. I spent the whole year feeling unwell and grieving over lost career, lost community, lost creative expression. I had to accept my diagnosis which is one full of stigma and misinformation. Everyone is an expert and knows ‘someone who had that once’ and ‘I know what you need to do….’. It seemed that most people didn’t believe how sick I was. Including people close to me.
2019: The worst year for me personally in recent years and possibly, ever. Mum had stage 4 cancer. She could have died. I thought she might die. I couldn’t do much to help her and this brought on more waves of grief, of the old, capable me. Luckily, she had team of people helping her out, getting her to the hospital for her chemo treatments and other appointments. I tried to help dad with emotional support, by having coffee with him every couple of weeks. It was nice and connecting for me and dad.
I came to understand the social model of disability which was helpful to me. I could still do things, but the world needed to change to cater for me. It wasn’t up to me to keep up with all the able-bodied people, it is up to them to listen to and cater for me. Disability is not a dirty word and it’s not the ‘worst’ thing that a person could ever be, despite the ableism perpetuated in the wider community.
In about July my partner had to have back surgery. She had hurt her back simply bending over to pick up a basket of laundry. She had to see a back surgeon person and we were told that there were three options. Not do anything and hope it get’s better, sometimes it does. Have some kind of injections into her back, this might help, it might not. Have the surgery, which had a good chance of working. The surgeon also told us if we left it, he probably wouldn’t agree to operate on it at a later time. The surgery was elective surgery and had some health insurance. It covered the hospital stay, but it didn’t cover the surgeon fees, the surgeons assistant fees, or any of the other staff involved in the surgery. It cost $10,000. We had to borrow and find the money to pay it.
Later that year my grandmother died (my mother’s mother, the last living grandparent). I saw her about 3 weeks before she died, I hadn’t seen her for ages, because I’d been too unwell. She was lying in bed with her eyes closed. I don’t think she was necessarily asleep, but she looked asleep. I took her hand and put my other hand on her, so she would have human contact and I talked. I just talked about what I had been doing, every now and then, at moments in my story telling she made a sound. So, I think she heard and understood me. When I left, I thought to myself ‘I hope she dies soon’. She died three weeks later.
I was a finalist in The National Disability Leadership Awards, in the arts category.
Mum didn’t die. She’s alive and well and probably has well above average health and fitness levels for her age. Same with my dad. They are healthier than me.
2020: At the beginning of 2020 it was hell. Most of Australia was burning, including the bushland near where I live. The skies were grey, and the air filled with smoke. I couldn’t breathe, the smell of the smoke was making me ill. So, I started wearing a P5 mask so I wouldn’t breathe all the particles that were in the air in. A few weeks later, everyone was wearing P5 masks. It was a sad time. Lots of country areas went up in flames and millions of animals were killed or hurt in the fires. This damage was so big and enough that it potentially means the end of several our beautiful native animals. I don’t know that they will recover. They will die out.
Not long after this I was not feeling great. Something different from my usual not feeling great. It was anxiety. I was feeling a tightening in my chest and knew something wasn’t right. I realised after about a week that it was because I had realised my relationship (with my second, non-live in) partner was not working. I guess I’d known for a while, and in myself I had kept making up excuses for her. Like many of us do for our partners. I broke off the 8-year relationship. It was a 5-minute conversation. She accepted what I said and didn’t go into bat for our relationship. No, ‘Can’t we work on this?’ or anything. I was devastated. I still loved her, but the communication wasn’t there. I think she has things about herself she is yet to work out. Things I see that she doesn’t. I thought about her at least once a day, multiple times a day for a long time. It’s only now, 18 months later that I can go a couple of days without thinking about her.
I thought I might have a bit more space to see friends, because at this stage I had been putting a lot of energy into the relationship and had missed out on friend time. I thought seeing a few friends would help me get over her. Then Covid hit. We were told that this illness had come to our local area. An illness that spread easily and quickly. There wasn’t much known about it at the time. It had started in China and had killed thousands of people over there and had jumped and made it to other countries. I had already had virus and not been anywhere for a couple of weeks, so I was safe. Then we all went into a lockdown. People were not allowed out of their houses except for essential things.
People panic shopped. Toilet paper, you couldn’t buy it anywhere. Why toilet paper I don’t know. There are many ways and things you can do to clean your arse; you’d think food would be more important. Things like rice and flour were the next things to go. The messages put out by the media basically told us that only the vulnerable will die from this, if you’re healthy, you’ll probably have a better chance. Thanks, because of pre-existing illness, I caught everything, which meant I would probably die if I got it or so I thought. The covid stuff continued, and continues as I write this.
Then, something happened that changed my life entirely. I got an inheritance from my grandmother. It was not enormous, but it was also much more than what I expected. This changed my life. I was able to pay off the debt that was weighing my partner and I down. The debt that was gained because of medical issues from previous years. The debt that meant we lived from week to week. The debt that meant that I was wondering how I was going to pay for the $11000 worth of dental work I needed or any other medical bills.
My mum gave me a bit of her part of the inheritance. I paid the debt; I got my teeth fixed (which was a couple of thousand dollars cheaper because I could pay it up front). I bought a few other things to make my life easier. I bought a few new clothes. I was able to go to a sleep clinic and organise a CPAP machine which made huge different to my health. I also saved a big chunk.
In the middle of all this I also had a government department buy one of my artworks and pay for a copyright agreement on the artwork. They paid me a small fortune. The artwork was used as a front cover of a publication they were putting out.
Having the CPAP machine meant my health had improved a bit. It’s amazing what being able to breathe can do for your levels of oxygen and ability to focus. I wrote a grant application to produce a variety show the next year. It was a lot of work, about 20 pages in total. This included answering a criteria, various CVs, budgets, and letters of support. Months later I found out I got the grant. 2020 was a crappy year for most, but a great year for me personally. My life changed.
2021: Okay so it’s not over yet, but so far, it’s been mix of hard and great. I have started to organise the production I am planning on putting on. It is for Queer Disabled Performers. I’m excited about the performers who have come forward to be part of the show, but I’m disappointed in the jealousy it invoked from certain members of our local queer communities. It’s also been hard dealing with differences amongst various community members. From my experience of our local queer communities, it’s great when you are new to an area or perhaps newly out. It was not hard for me to meet and make friends when I first came out, but then it got to a point where it went sour. There are several ‘big’ personalities who dominate the community, some are nice people, some are Nasty Fuckers. Unfortunately, the Nasty Fuckers also tend to be people who are well liked, popular even, until they are ‘crossed’, then they turn into bullies. However, only a few people get to see the actual bully. The rest of the community goes on thinking the sun shines from the Nasty Fucker’s arse.
In my time I’ve dealt with several Nasty Fuckers. Either personally being bullied or by having members of the queer community come and confide in me over mistreatment by said bully. So, I know a lot. People are not good at standing up to Nasty Fuckers because it makes it more difficult to navigate their own path and/or they simply don’t have the energy to deal with it – I think us queers all have a degree of trauma to deal with and sometimes we just can’t deal with anything more. Add further intersectionality or get further along the LGBTIQA+ line of letters and that part of the community usually has it worse than the letter before. The ‘L’ is only in front because, feminism, but the ‘G’ still is more dominating, because, patriarchy.
So, I’ve had to deal with a couple of Nasty Fuckers, again, this year. I’ve had no real support from anyone, except for other victims of the Nasty Fuckers and well, life goes on and most people don’t believe me or don’t act on information about the behaviour of Nasty Fuckers. It’s exhausting. I’ll have to write another blog about Nasty Fuckers specifically.
The amazing thing that has happened is very recently my partner and I bought a house. A town house. Something we’ve been slowly working towards for ages. Something I didn’t think would happen a couple of years ago, I thought I would eventually be homeless. I was constantly terrified. The buying the house thing, the process, was hard. Another thing to write about. So, in the coming months, we will be packing and moving.
I am still producing the show, however, Covid is still here, alive and thriving. Where I live, in Ngunnawal Country (Canberra) we have been in a bubble and have not been overly affected for quite a while, however, recently there has been some positive Covid cases and the numbers are growing. So, we are currently in a lock down. Not allowed to leave the house, except for exercise (1 hour a day), medical appointments (if your medical practitioner will see you), food shopping and not much else. So, the show might be postponed, which means I must think of other ways of producing an outcome with a cast of performers who are nearly all currently struggling because of Covid, with motivation levels that seem low. Who knows how and when it will happen.
2022: I hope to be in my new house, and I hope to do more of a return to my visual art and I hope to do more writing. I’m tired and worn out by the Nasty Fuckers in the queer communities. I’m tired of navigating around them. I’m tired of trying to participate in community events, they are mostly not accessible, and people don’t understand how hard it is for me (and many other disabled people) to participate. I also have few friends my own age, and it matters, ageism is another thing that I feel is alive and thriving in queer communities. I think a lot of people think I’m just a bit tired and that I have days where I’m fully functional and I have friends and family I’m out and about spending time with, in between the times they see me. I’m not. I’m at home, with my pets and occasionally my partner. I see the few friends that hang in there for me. Anyhow. I hope I can reinvent myself, again. I’ll be like the person I was in my early 20s, only older, queerer and disabled. I spent a lot of time then doing my own thing.