Now, this post should come with a warning, there will be swearing or alluding to words I normally will not so much as utter, but I feel you will allow considering the circumstances.
There was one particular Monday, I went down to fang it to a 12.30pm appointment. I had another appointment at the same practice, so Hellonwheels comes in handy. Even allowing me to scoop up take-away on my way home and maybe some items from a supermarket. Fresh milk anyone?
I went into the garage and had two sets of keys in my hand as well as my walking stick and the flag for my scooter. I keep the flag inside as it’s not my first flag. If it’s a selfish person or a low hanging branch they seem to walk.
I walked in the direction of my scooter and looked up, my step slowed when I realised it was not where I expected it to be. The transformer cords dangling loose out of the EV cabinet. Eyes wild, I couldn’t decide if I leave the flag where I expected to find my scooter.
But time was short, I only had 20 minutes until my first appointment, I couldn’t afford to reschedule. I had to get to both that day.
Mother trucker!
What kind of LOW LIFE Scumbag steals a Mobility Scooter? I’m still months later yet to cry. What’s the point? Too angry! One-handed without pockets I was juggling two sets of keys, my walking stick and the flag. Don’t even know why I was still holding on to that.
All while calling my lovely Young John. No time to talk. Was he free? Could he help me get to my appointment? Use the key to get from the carpark into the foyer and then the lift.
Next call to who Young John would refer to as my Indian boyfriend. Basically, any other taxi driver I call to be my transport.
I had to problem solve getting to my appointments. Unlock my front door after going up in the lift. Put flag and scooter keys inside. Back downstairs and out to the street. Get in taxi. Call Owner Corp regarding CCTV Footage. That process alone should have been easier. Made it to my appointment only fifteen minutes late. So grumpy, I did not manage to sleep at my physio appointment. So angry I was.
You know those days, this is literally how my Monday went. I couldn’t make this shit up if I tried.
Went to bed early, 12.30am, that’s early for me, trust me. Still awake until 5am, but I had an early start plus a full morning planned. First mission, fucking disaster.
Carer arrives at 8am, even my cat is listed off and confused. She knows when I should write off the day and go back to bed, but I had a specialist appointment that is every three months. On a Monday, at 11.30am, because it’s the last appointment for this clinic on the day.
This is often a Team Helen mission. Mondays I have a carer called Helen; she’s a Heavy Hitter! (I’ll circle back to that later!) We taxi to save parking dramas or me going in without her. Her agency also hits me hard for kilometres in my carer’s car. (ie. they hit me for it instead of my funding.) and the carer always is worse off. I digress, taxi to appointment, I inhaled my entirety of pills before I left and pack something to eat on the way. Learnt from the driver that burnt toast smell I always catch on the way is a coffee roaster. No, I’m not having a stroke. (Apparently, that smells like burning car tyres?)
Arrive safely and early. Hear a Code Grey while we wait this triggers a Google search of the different codes that are used in a hospital. My carer is on my left and that is my worst blind spot. I regal her it’s a story of a visit to hospital over ten years ago when a code was called for me when I’d tried to get a sleeping pill at 1am when they kept putting me off. “Just close your eyes and you will go to sleep!” I was told, like I’m a four-year-old child not a forty-year-old woman who never slept at the correct time. Anyway, started to feel a little seedy while we waited. Helen asking if I was OK, did I want a drink? You know when you just want to power down and not be present? Started to feel sick. Suggested Helen should move to my right side. We had discussed it, but we went with it anyway. So, I threw up. (Just saliva! Not my breakfast even but worth noting!) and peed my pants. Honestly! This has never happened before in public.
I used the bathroom and when I returned Helen mentioned the Doctor had asked if I was still OK for my appointment? Like, I didn’t come all this way to throw up in the waiting room and not get Botox in my leg? It’s also usually these times my carer comments on how pale I look and after throwing up how much “better” I look. I am generally sun-averse anyway, but “pale” is normally fine by me.
My recent visits for Laser hair removal start with the question “Have you had any sun?” And my witty response. “Not if I can help it?” Anyway, asked for something to put on my seat on the way home. This was granted and off we departed for home. She asked me if I was OK, and I reminded her if I wasn’t I’d come to the right place. It was a hospital after all. Mission to get home, half showered and into clean clothes and back to bed my only goal for the rest of the day.
My lovely carer departs and I manage to sleep for two hours. Wake in time for an appointment with someone that thinks my appointment is on Thursday. Don’t know why this keeps happening, but it’s about the only thing I can read in my diary. Lazy standard rest of the day. Prepare the next week of pills, while standing in the kitchen. Feed Mika, eat standing up to better utilise time. Hope the Botox doesn’t kick in while I’m moving around my home. My leg will give out mid-step. Botox in my leg doesn’t make it look younger, just work better.
Botox puts over worked muscles to sleep for a few months, so other lazy muscles have a chance to build and take an even balance when the Botox wears off. This is to manage my drop foot and hyper extending knee so, I don’t need a knee replacement one day and I move and walk better. Who knew right? So, that was my Monday. Am I done yet?
Sometimes, there are little things about having a disability that you would never imagine or believe.
People will always imagine everyone treats me as a human being that deserves respect, love and support and that might feel fair and truthful for some of the time. However, on occasion someone you least expect will throw their emotional baggage at you they refuse to deal with themselves, I gather.
When I’m depressed, I hibernate to minimise fallout on others. I’ve found biting and hissing at others just makes them less likely to sign up for more.
It’s not for everyone. It’s not even good for a long-term solution for anyone with mental health issues. But I like to consider I’m taking responsibility for my issues and not projecting my shit on others. But other times, when someone wants to pick a fight with me, they will throw it in my face that I’m uneducated.
I’m sorry! Did you hear me?
About ten-years-ago I had an OT ask me “How far I made it in school?” I was offended. I finished secondary school. Then completed three years of Tertiary, Arts, sure, however, I’ve since completed a leadership course of which this blog was my project. I also did part of a Certificate IV in assessment and training but don’t even start me on that.
I never had to do a four-thousand-word essay until my first year of tertiary. My art history lecturer thought my presentation on Pop Art and the artists Andy Warhol and Roy Lichtenstein was brilliant. I know it may sound like I’m justifying but!
One thing I would never do is kick anybody when I’m struggling so I feel better about myself. So, you may be able to tell I’m having a hard time.
Sometimes, being one-handed, having half one’s eyesight, not being able to see. Work catches up on me. And as per I’ve some blogging to catch up on. I really don’t like blogging as a reactionary measure because I like to let the dust settle but maybe I need to rant.
Then I foresee many posts to context the ranting. Alas, it is 12.30am, and while this is early, I feel I should call it a day. Unpacking this shit always feels like unpacking dirty laundry.
I have recently self-diagnosed well, myself with a new medical condition. It’s called being ANGRY. I suggested this via text to my GP who replied, “Not so recent!” and a recommendation to “Chill” never have words had the desired effect rather than a red flag to a bull. However, I gave him a “Hahaha!”
Every now and again I reach a level of intolerance to people just wasting my time. Not my GP, he’s always part of the solution. Not part of the problem. But then there’s everyone else.
For example, my tram route in Melbourne still does not have accessible platforms throughout. I think my route is only one of two. Ours is the longest tram route in Melbourne. There is no excuse! I mentioned it should be an agenda item at a local council meeting and was informed by someone new that it had been discussed at a previous meeting back in 1924. I just made up that date to be fair and its pre-dates the meeting it was discussed at.
And you know unlike that new council member I both attended that meeting and can look out my balcony to tell you there are still No accessible tram stops throughout, nor even the area they had promised to be achieved by late 2024. (That date is accurate! FYI!) The proof is in the pudding that it’s still not done.
I think this is part of the problem of why I hate email so very much. They just go back and forth not making me feel like much is achieved. Just people pushing responsibilities onto someone else, because people don’t want to do their job, or don’t know how to do something that’s been asked of them, so deflecting and avoiding a learning experience.
Also, to my great annoyance is when I must educate people on what should be included on an invoice. What the actual fuck people.
I’ve been project managing a little something lately that has been doing my head in. To be continued…
And here we are again, sitting with the intention to smash out my next batch of blog posts, to catch up on all the things. With the best of intentions I’ll see how this goes?
The best meme I’ve seen at the end of January 2025 stated, “This month was a long year!” and I whole heartedly agree.
That is to say by the end of 2024, it was a bit of a shitstorm. About a month and a half, ending in late November I was in absolute crisis. I’m relieved to say I rarely have had to resort to that particular word but it’s accurate.
You see, late last year, I moved my home. Well, just me and the contents. Not far at all as the crow flies, but packing up after seven comfortable years of more affordable rent the earth shifted and I relocated to my forever home.
The lead up to which, as much as I’d tried to have everything sorted and come together resulted in me not having the much needed funding, the extra carers and the so called promised help on the day. I’ve only just found the accurate word for how the big day moving was.
The following week after the trucks came, I had two Little Red Trucks (I only use them) and four people. They spent seven hours relocating me this one last time.
I have moved lots in my life. Plenty of times in my twenties, four times now since my disability and I’ve taken to making the statement, “I’M NEVER MOVING AGAIN! I’M GOING FROM HERE TO THE GRAVE! OK, I’M GOING FROM HERE TO THE FURNACE! WHAT! TOO MORBID? YES, I’M GOING TO BE CREMATED!”
When telling people about my new Forever Home, I’ve hinted at several things until I’m asked, “How much is the rent?” I smile just a little and shake my head in the negative. I’m never paying rent again. Quickly followed by “Don’t hate me because my father loved me!” Next.
Today! The D.B. finally went to its home in the storage cage in my carpark along with some laundry tubs a friend had bought to help me move but, just ended up needing to be moved then stored in my new home because said friend yet to return to see my new home and collect them. It is to say it’s another good example of why I stand by the decision to have bought a small dolly trolley years ago.
My carer today, standing the D.B. Upright and weirdly the plastic tubs perched on top, little adventures like this take time, planning and all the other chores caught up on so time can be put to tasks such as the D.B. going to its storage place.
Being one-handed I manage the keys, the doors, the buttons in the lift and the navigational prowess. Down to the ground floor, where outside the lift is a small area with a sensor light and another door to the garage. As we got out of the lift the architecturally flawed items fell and as I opened the door to the garage a man appeared. He had gotten out of the car someone was parking right next to the door. He was an older man, some salt and pepper in his hair and beard I couldn’t help myself, I told him “Thats not a dead body!” I think he appreciated my comment as he informed me, he didn’t believe me.
Times like these I appreciate despite my A.B.I. I’m quick witted. People probably wouldn’t even be aware of my A.B.I. That I’ve had longer than my fifty-two years, but I gave him a quick retort “It’s OK, because I may not know where you live but I don’t know where you park?” and from that he got in the lift and was gone. From knowing his carpark can work out his address.
So, inside the storage cage bits is protected from prying eyes, should anybody think to break into my storage cage, if the sight of what could be a dead body doesn’t scare them? Discovering rolls of off cuts of carpet will be to their greater disappointment.
I don’t know who needs to hear this, but if it’s not you, maybe somebody you know does?
Back in my twenties when other people seemed to have a new boyfriend or girlfriend every few months, I was very single. Not sex and the city single just waiting for my soulmate kinda single. Still waiting but this prick is so lost it’s annoying. Meanwhile, I perfected my empathy at the newly heartbroken with lines like “I never liked him for you!” “You deserved better!” Both goodies I still use to this day. So good are they.
On occasion, someone looks at me and asks if I really mean it. Honestly, I liked them until they gave me a reason not to. Now, you are heartbroken, so I really don’t have to think about them anymore either. I used this method with a good friend recently and felt the need to explain in all sincerity, I had liked his now “recent ex” up until he decided to leave him. He knew exactly how I meant it.
Even people who get it together and find their soul mate can’t keep it together and grow old together and I heard the enviable line recently, “Just get to the part where you sit on the couch, binge watch TV and get fat together!”
This is probably part of the reason I avoid dating. I mean, I don’t wanna do the cull the idiots from the one soulmate out there who is the one for me. Someone I’m prepared to get in the car and listen to music we both agree on for the whole journey and be interested in the, I’m just saying we have similar tastes and preferences. Been there. Done that! Not doing it again!
My last boyfriend didn’t appreciate my taste in music and the only common ground was when he suggested I put on the “soulful black man!” He was of course referring to Nina Simone. Who I pointed out originated from the country of his birth. You know those moments when you just know you dodged a bullet. Exactly!
So, people are getting the understanding, I’m now a homeowner. A rate payer. Seemingly, when some acknowledge as a fifty-two-year-old single barren spinster, I’m a respectful member of society.
It’s a weird space to be in, because I always hoped and imagined owning my home one day just assumed I’d have a husband that would pay the mortgage and my income would go towards the beautiful tiles to renovate a bathroom.
When my father died, I was able to contemplate having a forever home and weirdly conversations with friends about buying started to feel weird but normal. The basic understanding was shock, because I didn’t work and who was going to give me a mortgage. Trust me, I did all the research and was in all the groups and organisations that build AFFORDABLE AND SUSTAINABLE HOMES FOR LOW INCOME, etc.
I even had to fight to have myself put back on the public house in lists. That right there is a Bag of Farts. You don’t want it. But maybe not in a bag, but you need it and if you get offered it you definitely don’t want it. See the bag of fart analogy works out in the end.
After reaching out to both Local MP’s and Local Federal Members, the first time not much help, the second time never even replied to my call. I changed tactics and just got to house hunting. To be clear I didn’t have house money. I had Apartment Money, I’ve just wanted to make my dad proud.
The research I did leading up to buying, I learnt what you can get for how much. I saved fifty K, okay not having a second bathroom, but also spend an extra fifty K on not having a building with a car stacker. I’m still serious car stackers are a travesty. I hear nothing but horror stories.
Admittedly, the buildings that had those, the apartments felt much more like student digs. International students with lots of food deliveries. I really wanted a much more owner/occupier vibe with friendly neighbours who cook and give a crap about the environment and not having food arrive that they leave at the entrance to only get refunded and they do it all again.
My brain is very busy with analogy’s today, it’s either a good or a terrible day to blog. So, we will see how it goes. You probably want an analogy now? You can wait.
I present really well for someone who’s had a brain injury for fifty-two-years. My carers tell me this all the time, because we discuss that in person, people are oblivious to what’s going on behind the scenes. But, in reality what’s going on up “there” feels like a bag of rattlesnakes. Thats 1 (Analogy delivered!)
I wonder if people realise there are days up “there” is like having five people with ABI’s, five people with depression or anxiety and five people on the spectrum in a room. Shaken and stirred, rather like the rattle snakes in a bag, right? And I suggest, within a few hours the room above will look like some kind of mass casualty has occurred. Think blood, trauma. Mass casualties, I realise, for many this is going way too far. But I’m making a point.
Up “there!” in my brain, there is so much chaos. Just anarchy, and I know it’s happening. I just can’t stop it. It’s so busy I just try to get through the tasks as best as possible leaving as few people scathed as possible.
This is why people like me spend a lot of time self-isolating. It’s why we coped (apparently) better during the quarantining during Covid. It’s also, why we noticed how other people didn’t cope well during Covid. When I isolate too much, then when I do go out my brain is like “Oh my God! Look at all the thongs, the food, the people.
There are a people. What do you do? What are you peopling? Can I people with you? Let’s people together. Yes, we can.
Now, that is clearly an example. But we saw it a lot during the plague. Walking past chemists where I’d see a person behind the counter getting peopling, full blast by a customer out being around people for the first time in days. The staff members eyes flick out to notice if anybody out there that could save them. Is this even really happening? Am I the only one seeing this right now? Can somebody help me? And all of that is happening up there and on the outside, its Calm! Calm! Calm!
Everybody act calm and then, I think this is why I gift people treats a lot. It’s a reward, sure. But it’s my way of saying, you put up with my “Crazy!”
Later, I may stay away for a bit, so you miss me. Because you nipped at me and hurt my feelings. I try to bring a little funny, a little sass to everyone every day. But sometimes, others have too much owing on and it falls short. But this is why when I hand over a little love, I mean it.
Shit toilet experiences at the Melbourne International Comedy Festival
In general, this topic would live outside that of the festival, but it could definitely be its own blog. Frustratingly, these experiences are far from rare. I’m part way through my festival events for this year despite my lack of time to write and post about it but at times you have to, live when the opportunities exist, write, recuperate and replenish spoons over the hibernation of winter months to come.
Last night I saw two comedy shows very carefully booked, curated and logistically arranged by my event booking genius carer who is one of my heavy hitter admin chicks.
My first show was at the Arts Centre to see Danny Bhoy. I saw him the last time he was here as after my father’s passing back in late 2022, I decided the comedians I always wanted to see I would just start doing it.
Since making that decision, I’ve prioritised not only Danny Buoy, but Kitty Flanagan. Nath Valvo and Ivan Aristeguieta. To name a few and my accessible toileting experiences are always super not fun.
The Arts Centre despite the beautiful venue, the helpful staff, the frosted glass doors to the accessible toilet on the third floor closest to the ticket booking office, I locked the door, checked it. Locked it again, checked it, again. Ah, success.
Removed my cuff and collar, my bag, walking stick, and hoodi top. I know, over sharing and obviously my pants, to use the facilities, to do what I was there to for. I heard an older lady’s voice! “Here! Come in here!” and the door opened. Like I had not locked it. Now, I had hung my bag on the door handle which would not interfere with the lock, I might have thought could be seen through the frosting. Should someone bother to look. At least I was not mid-poo or mid-wipe. I had just managed to get a few single ply tissue squares from the selfish T.P. Dispenser. More importantly, the door remained open in this awkward unnecessary social INTERACTION.
It’s odd that the elderly love to imagine the accessible toilets are their domain and only theirs. I think they see me on their throne as a young person. Thank you! And not in need to use these toilets. I actually had to ask her to close the door with a polite “Do you mind?” It was more than she deserved considering the length of time she stood staring at me unsure how to solve this social quagmire.
I guess I should follow up this incident with an email to the venue, or just forward them this post when it goes live.
After this show, a short walk, a tram for two stops and another short walk to our next destination a toilet stop, this toilet had an ambulance toilet although I didn’t realise until I was ready to depart. I had used the lady’s facilities this time as I can often do and will. If that porcelain had been any lower to the floor, I might not have made it up again.
The second comedy show this time at the Melbourne Town Hall. To see our very own Ivan Aristeguieta. OK, He isn’t originally ours but, he’s seriously Australian now. He migrated from Venezuela thirteen years ago and originally settled in Adelaide. He divorced and had in the last year married one of ours. So, he’s ours now. It’s hilarious to see our culture through the eyes of a new Aussie.
This is my fourth time seeing his show in the ten years he’s performed here. Wish I’d been able to meet him at the meet and greet he announced he was doing. My friend sadly departed after my last bathroom experience as he had a train to get to home.
My second bathroom experience, younger people more prominent in the audience but not completely I chose to check out the accessible bathroom. Lock. Tick. Hook on wall, tick and toilet not close to the floor. Tick! However, things fell apart a little when I encountered the again “selfish” paper dispenser. Or it could have just been the previous occupant as I could not for the life of me find the end of the roll. I hate those big commercial toilet roll dispensers that have the ability to not be so big they either hold two rolls with the plastic sliding thing to allow access to the other roll or there is a big roll that allows them to not replace it for days. I don’t know, it’s nice that they think it’s not important to check. I checked my boob-pocket for a tissue and would have made do. But alas, I had neglected to stash one for such emergencies and I was forced to frustratingly continue with the roll. Eventually, leaving a shredded confetti protest on the floor after managing the squares I’d required.
At least on this occasion I’d not had an audience. I can’t decide which was the better experience.
Bring on winter so I can make like a bear and hibernate.
Hell onWheels/Life One Handed 