About seven years ago, a regular Monday carer, let’s call her Monday. Turned up to work on Monday after her team the Bulldogs had won the Grand Final on the Saturday. She stood at the kitchen sink preparing herself to do the dishes, I had reason to ask if she was still hungover? She replied she was still “Dusty!”
This is not what the kids are calling hungover these days. Monday’s tattoo was on her upper back just below her neck where she had gotten a Bulldog tattoo. She already had tattoo’s so not a stretch.
I used to have a younger (25-year-old) carer that was a Richmond supporter. She would tell me all about the start of the season and how swell her team was expected to go and she and her family would travel to the Punt Road, Richmond Oval to watch them practice. I would have to remind her I didn’t need to know. Lord love her.
Her team won the Premiership, I think one year I had her and we were lucky enough to run into my people. I like my people to meet my people. I mention previous carers all the time. They are so much a part of my life when their lives take them away from me the stories, I share keep them present.
You may have been around long enough to read me express my thoughts on Aussie Rules Football and that is, I have little interest in it, except to say at the end of the season I want Carlton to not be on the bottom of the ladder, Collingwood not to be on the top. And for the Cup (the trophy if you like) to stay in Victoria or interstate.
Until 1990, it was known as VFL, and all teams resided in Victoria. Yes, I just asked Google! And then after teams started to merge with others in other states around Australia. So, with the exception of my last preference that the Cup remain in Victoria I definitely would prefer Collingwood doesn’t win.
Carlton, a very common team to be followed by Italians was not doing well until mid-year and suddenly, they were in with a chance.
I honestly thought my father might have had something to do with this from, you know, up there. What! It could happen and the weeks of the Semi-Final’s, they fluffed it. I didn’t watch it at all but again, consult my carers and google for the long and short answers. I love that my carers do watch it and have an interest.
So, if you read my last post, you would have caught their line that the “Most Hated Team” won. I know people that love them. However, they have had the culture of being “One-Eyed!” And racist and homophobic, etc, etc. need I say more?
Apparently, after the win this year Smith Street Collingwood was one big party. A celebration. Locals I know in that area lost their voices and were very hungover the next day. It wasn’t me hungover so I’m with it.
It’s also just recently been the anniversary of my father’s passing. I know, it’s been a year already. A friend said she would have said six months. But a year. Exactly.
And it’s shit to be sad about the likelihood of being alone on my birthday, sad my father’s passing when there is a war in Ukraine. Still.
The most hated football team in Australian Rules Football win the grand final this year and the No-res, won the referendum the last weekend in Australia which was to finally recognise the First Nations people in our Constitution. It’s a fucking travesty. We might be the last country to do this.
Now I feel I need to unpack each of these things. And FUCK! ISRAEL! think I can unpack that or Ukraine to be honest. Humans are just awful right.
Part of October sucks. It’s not because it’s my birthday and I’m getting older. Not at all, if you think in simple terms, you get older or you die. You choose. Exactly, so I’m perfectly OK with being 51 this year.
It’s the fact that family don’t get on board to see I might need them around. If you have followed me for a while, you might recall I had a baby sister born on my 8th birthday? Yeah, best birthday present ever. However, we only shared one birthday together where we were both sick. I’ve one photo of us during the day with mum at the dining table tasting the ice cream cake mum had made and when my baby sister, let’s call her three. When three was only fifteen months and a week old and she was gone.
My aunt said to me last November at a family gathering. No idea how this came up, but my aunt said Three’s funeral to date was still the saddest funeral ever. I had been 8 years old changing nappies and getting up at night because when she got big enough for a cot, the cot outgrew my parents’ bedroom at the front of the house and she took up residence in my room. If she woke during the night and my mum, let’s face it dad isn’t the first parent to jump out of bed in the middle of the night, is he? I would get Three up and carry her towards my parents’ bedroom often intercepted by mum on the way. None of this is wrong, it’s just I think it only occurred to me in more recent years helping me celebrate my birthday means we are not celebrating Three’s birthday. This year, Three would be 43. That’s sobering isn’t it!? It’s a lifetime but it’s something one doesn’t forget.
Some years ago, two of my family members chose to call me at 11.55pm, chanting “it still counts!” Clearly, oblivious I’d been through every emotional roller coaster all day feeling no one gave a fuck. I even finally had my dad trained to call me on my birthday. You heard me, I had to “train” him.
Yeah, I offer a certificate 2 in how to get your parent/significant other to remember to call you on your actual birthday. It’s a Cert 2? I think it would be.
For years, I’d call my father on his birthday every year, he’d be a little embarrassed even telling me it didn’t mean anything and I’d remind him it was HIS Special Day and it should mean something. It was always a pity I couldn’t be there in person to do something nice for him. I regret now, I never sent him a card even. He would have lived off that forever if I had done that. He would have had it on display forever. My mum I would send a card too because obviously I love her too and there would actually be hell to pay if I didn’t. In more recent years with the going to hell that has become of my handwriting, I’d outsource my mum’s card to be written by one of my slaves, OK, my lovely assists, my carers, my mum wasn’t thrilled about that either, you would think she would appreciate not needing a translator. No.
So, sadly the shit birthday is the start of thinking what the plan is for Christmas and where I will be and who I will be with? Also, how accessible it will be and how much time I spend there alone despite being under the same roof as actual family. If I’m not in my apartment, who will love and feed Mika, who will water my plants? One of those cannot be revived, but they are all important.
I had decided to take a year off in what would have been my father’s last Christmas thinking I’d go spend the following year with him and I have to regret about that too, because he didn’t make it. I had gone home for Christmas the year my father had had his heart attack in the early era of the Plague. (You are all aware this is my term, for Covid 19?) and all my carers asked him polite questions “How are you? How long have you lived here? Is it you and your wife?” And oh my God! So dramatic, I could just feel how sad he was. It was overwhelming, my father was horrified by learning his heart had stopped on the table, I wasn’t belittling his trauma however, I kept needing to remind him the surgeons had warned him this can happen. I reminded him the surgeons hadn’t spent however many hours getting his heart and arteries in peak for him to die on the table. I also explained to him when they move you from the surgery trolley, they put a timber board under you by tilting your body up, sliding the board under you then pulling you on the timber to another trolley that you stay on when they relocate you to recovery and then even up to the ward. Yes, I know this because I was conscious when this happened with me. I was alert, needing to pee and very unhappy, I had iodine floating around my arteries in my brain that made my blood pressure drop and nurses start panicking I might expire so they panicked, running around the room. I had wanted to remind them “I’m awake you know? And I can see you! Just calm down” I guess I need to context that now too?
The Christmas I spent alone, my older sister had attempted to be supportive by telling me I could make the decision to be where I would be happiest, even if that meant home alone. I later learnt she had been in my neighbourhood spending Christmas with a friend, more socially isolated than I am, but that it hadn’t occurred to even stop in for a cup of tea, was brutal.
So, birthdays suck and generally so does Christmas. So, alas my heart and soul is death.
So, it’s another day, another fucking disability. Sometimes, a bandaid on one important finger on my right hand just adds to the torment. In year 9 (circa 15) we learnt how to touch type. Yes, that’s with both the hands, losing strength in my left hand while in an admin job often meant I was already saving time by only typing with my right hand. With all five fingers and thumb but rather proficiently.
Now, I’m even more proficient typing one handed, but on occasion, an injury occurs. Not from typing but in general and a band aid is sported and depending on thumb or fingers it’s like having my disability day zero all over again.
I’m a thumb texter and that is as infuriating as if I’ve cut or burnt my thumb. Because I can only text if I’m seated and I have my phone on my leg or table.
Honestly, don’t even get me started with how hard it’s getting to turn off my phone one-handed. It’s starting to be not disability friendly.
Seriously. Yes, there’s a lot of “seriously” in this post. Go try all your devices, gadgets, things one-handed and not just once, do it like it’s your only option. Like it’s your reality for now and ever after.
Apple, stop making your tech child-Proof. Well, Hell-Proof! I’m already not playing well with others by brewing an Apple user. I prefer it that way to be fair and if one needs reminding.
This is how seriously times have changed. I still remember the first time I swore in front of my Mum, it was a Big Thing. I mean, it just slipped out, she was washing dishes in the kitchen sink and I hadn’t meant to say it out loud but obviously she pulled me up straight away with a “Hey!”
In the olden days the first swear word we used was “Shit!” These days I might let outta a “Excrement!” It’s the same thing just better educated. To the younger generation, use more creative words. Get educated.
And can you drop the long annoying acronyms? So happy to not be parenting in this day and age. One of my recent younger carers, let’s call her 25. Guess what her first swearword was? Yeah, rhymes with Punt. Exactly!
The context here is she was arguing with her brother and she felt he had been and he deserved to be told and their mother heard. Oops!
I think we all know my favourite is still a good “go forth and multiply!” I will let you work that one out for yourselves.
It should be needless to say; I’ve become a bit of a potty mouth in the last fifteen years since my disability. With the best of intentions, I’ll be swearing a lot here today, but all within context.
Hope you can cope? Note, not a question.
When I worked for that shitty NGO (Non-Government Organisation) twenty years ago, it was a Christian Non-Denominal Not for Profit and the grumpy ex-chef taught me one of my favourite swear words that he made work appropriately. Sort of, he would sit and behind his desk, pull up his pants and state rather loudly, “Jesus!” Brief pause “Mary! and Joseph!” I don’t know if my more Godly followers are still reading. But if that’s offended you? You should probably stop reading now. It’s only going downhill from there.
I don’t even know what I wrote for the more devout to follow me to start with, but hang in there, I’ve got something for everyone.
Meanwhile, I express, the above workplace I only refer to these days as Voldemort! If not familiar? He’s the evil person in Harry Potter and they do not utter his name for fear just doing so will bring forth his evil, I will circle back to that one day but it’s a dark place I don’t often venture.
Occasionally, I’d be out with a carer and witness stupidity from another driver on the road and I would let out a “Jesus!” Just that and my driver/carer/wheel woman would complete the saying. I’d compliment her with a “Your training is complete!”
It’s not always needed but when my boss used it, I would look in his direction and enquire, “Is that our caseload?” He would be cleaning his spectacles in quiet contemplation and I asked, “What is it?” He would quote a number that was not good.
The term caseload indicated how many clients we had currently referred to us to get in the door, get Placed or get Exited for one of many reasons. But mostly, it indicated how we were doing a lot of work and if not being efficient enough we were not actually getting paid for it. Other favourite swear words since, have been Sassafras, it’s actually an outer Melbourne suburb where it’s rather nice and lovely, but really, it’s just my creative way to swear. What does that mean? I don’t know. Whatever you think it should? Alas, I should stretch my other creative genius on swearing to another post.
If you saw my blogpost a bit ago where you actually saw me doing a radio interview. You may have noticed I didn’t look at the camera much.
Recent conversations with my Nueropsych where I explained if I’m talking to someone I know, I don’t bother making eye contact. I know who they are, I trust them in my personal body space, I know what they look like so I’m only needing to engage in the conversation. Occasionally, I’ll look up at them to find they are staring deep into my eyes.
This is not to sound romantic at all and I’m generally taken aback being pinned by someone’s eye contact. In reality, I need to cater to my loss of eyesight in ways you cannot imagine all the time. I move people from my peripheral vision on my left to somewhere on my right. When people loiter in my blind spots my brain is trying to see/make-out what it can’t see and in this process, I get a migraine and generally, people I’m trying to see do not stand still. This adds to my brain strain.
So, it is to say, my nueropsych explained by not making eye contact with people it’s how I preserve my energy.
I don’t know what it is with bullying these days. Wait, hear me out. When I was young, I was bullied although we called it something else. It made us tough, but we had to say terrible things to a person’s face.
I’m not going to ever suggest kids these days are soft. I am going to say, kids these days get it easy. If they couldn’t hide behind their computer screens and their fake profiles, they would see the damage they do on the cold face.
Kids these days skip a lot of stages and very quickly go to “you should kill yourself!” I wanna meet those kids, they deserve to be throat-punched. I think it’s akin to, I want you no longer breathing.
I’ve never done it, but I like threats that people never know if I’m serious or when they will get delivered my threats.
Young kids need to learn of the consequences of their actions. Can they please stop telling other kids they should kill themselves?
Sometimes, with advocacy it’s really hard to get the point across to people who you might be applying for funding or navigating the system to get the care/help you need to survive.
Funding, whether it’s DSP or NDIS the people who make the decisions about if you even qualify or not, don’t have the same lived experience that you do? it’s helpful to
Do I hit them with all the information so at least maybe something hits? or
2. Cut things back to the basics.
What!? You didn’t expect I had the answer to this did you? I live in this space every day of this TMI (too much information) territory, or do I give people as little as possible?
It never ends.
How much do I need to tell people to get from them what I need, for them to do their job properly, for me to do or achieve what I need to do to get through the day/week, etc. Just so I can manage to get to the next day.
It’s frustrating to think I’m not trying to do anything super amazing in life; go on holidays, have children, look after children, have a dinner party. I don’t know. what is considered normal. I just want to be able to do tomorrow, well todays been a lazy day so I should hope tomorrow I smash the shit out of the day.
Hell onWheels/Life One Handed 