I feel like it’s been too long since I mentioned the thing, I like to call the Plague. Don’t make me use the word.
Occasionally, I find a reason to do a RAT for when I have an appointment somewhere if I even reach for a tissue, I will be interrogated like I’m going to cause the whole world to shut down.
So, I do a RAT and present a photo, then announce my favourite line! “NOT PREGNANT!” Then after a brief pause “NOT COMPLAINING!”
If you are not familiar with the reference? The RAT thing looks much like Home Pregnancy Tests. Never done one of those, still not complaining. Not a dig at people desperate at wanting to be pregnant.
I’m not bragging when I say I’VE NOT YET HAD THE PLAGUE!
Although I wouldn’t mind being able to say “I lost the 10 Kilo’s I gained during the lockdowns” I’m still not complaining.
One of my young carers had the Plague in early 2022 when all the young ones were getting out to all the festivals and coming home with gastro or the Plague, I heard from her and she told me she’d lost 5 Kilos. I responded I needed the Plague: TWICE! She was so delirious she didn’t get my joke, until days later.
Lastly, when will it be over? Don’t answer that! Hope everyone is staying safe and well.
This is a weird little gift a friend gave me that has provided many laughs.
I outsourced to a tech-savvy friend to procure (buy!) me some USB’s so I could play my music in the cars of my carers when we are out shopping. He did and he saw this apparently, I just learnt months later he had ordered a Wonder Woman USB but this arrived instead, which makes it even more amusing.
I’ve put music and shows on it and loaned them to my carers. The husbands and partners enquire “Who’s Dick’s that!?” This is after I enquire “Did the Dick work?” Oh, this could go on.
I even had two gentlemen come to my home with a daughter/niece in tow Miss 6. She went to meet Mika on the bed, the father close behind. On the way past my entertainment area, she grabs a “Toy”. This is when the father followed to make sure Miss 6 didn’t get herself into trouble. Leaving me to explain to the uncle what exactly the Toy had been. I explained stating, “She won’t yet know what it is but, it’s a bit wrong” Thankfully, the uncle was amused and I sent her off with some chocolates to share with a brother. I am such a Nona!
Should I need to mention my tech friend is Gay? So, he’s not a straight “friend” being weird. Just one of my gay friends being greatly amusing. Enjoy!
Sometimes, on my scootering adventures I encounter obstacles. People blocking footpaths with their prams, dogs lazing across footpaths in front of cafe’s. I always happily go for a pat of doggy ears. Love those soft bits, but I do not have enough insurance to hit pets or babies and occasionally, off the High Street I encounter this – BIN DAY!!!!!!!
Thankfully, I can get off my scooter to move them. I could totally have ploughed through and kicked them onto the road. There were no cars, but I did good adulting.
A couple across the street called out they were going to come over to help me, but I had already moved them. I thanked them and my adventures continued…
Years ago, I attempted to dissuade a group I was part of to stop using “Reply-All” in their befuddled state, some asked “What? Why?” It was a brain injury group so there’s that.
I mentioned there’s always one Numbnut, that hits “Reply All” top ask the original sender “Hey XYZ that’s great font! What is it?”
I’m not a PC User and even I know how to work out the font style. But in the meeting the Numbnut in question will prick up their ears and insists “It was a really cool font!” Someone else, not getting the gist of the conversation enquires what was the font? I mutter “Wing dings!” and a few laughs. You’re Welcome and another Numbnut asks (you guessed it) “what’s Wing Dings?”
For Christs sake! Write it down. You just got homework.
If you don’t know what’s going on in those kinds of meetings you gotta make notes, go home and do some research. One Numbnut had never heard about “Ted Talks”. Homework!
Meetings shouldn’t take this much time and I’m trying to not be doing my email at 1AM! It’s gotta stop and it’s because that’s when all my other chores for the day are done.
This week, I am following up on last week’s post and asking for your support for my blog and my intention to do brain injury differently. My question is “Is bullying OK?”
So, had a very ordinary meeting last Tuesday, trying to convince people who had not bothered to read my blog, that the blog link remains on their website (that features a disclaimer) for the group I’ve volunteered for 10+ years.
A fellow-member and friend suggested if I wanted to have my blog appeal to more people, I should change it. To be blunt, I could write about brain injury but it’s not sexy and people don’t want to know anything about brain injury until it’s absolutely relevant to them.
I could write about risk-taking behaviour but you don’t have to drink, take drugs and try to drive a car and potentially kill people while you nearly kill yourself to get a brain injury. I’ve done none of those things and I have a brain injury.
I am probably only alive because I didn’t do drugs, I barely drank. I found alcohol used to make me feel like my head was swimming. Probably because alcohol thins your blood and my AVM once diagnosed was stated as being enormous. So, I suspect its why I was feeling unwell I just didn’t have an interest in doing something that made me feel so awful.
That I don’t ever mention companies or organisations good, bad or otherwise, should tell you I have some ethics.
That’s this NGO (Non-Government Organisation/Not for Profit) thinks to bully me to remaining quiet for the bullying they think to visit on its long standing members and that it’s acceptable. Other members have been destroyed by its poor behaviour and so, if you are still with me? You don’t have to love everything I write or stand for, but if you have any appreciation for what I stand for please Like, comment (positively please) and share through your networks.
My deadline to have support in my corner is 14th June, 2022.
Thanking you in advance and with much love and predication.
When you read this post, please keep in mind I’ve had my brain injury over fifty years and I’m not even fifty yet. I know I only learned of my AVM (Arterio Venous Malformation) when I was thirty-four, but my diagnosis meant many symptoms I’d experienced all my life, finally I had some meaning.
So, I guess it was going to happen sooner or later. I just always imagined it might be a family member that thought to insist I edit my blog. But then, my family would need to read my blog. We all realise blogging is about sharing thoughts, ideas, theories, witty stories (I hope in my case), but thought-provoking stuff. If you don’t like one post or a word, think about why? Have a Conversation. It’s how we learn new things. Get educated.
I didn’t ever think it would be from an ungrateful group I’ve donated ten plus years of my life volunteering for. Talking members off a ledge, explaining and giving context to past endeavours and advocating for all the efforts of past volunteers so everything they have contributed isn’t burnt to the ground.
Seriously, so many emails.
People insisting on using “Reply-All!!!!!” Can people please stop doing that? Just stop it! So, having been offered an ultimatum. I think nobody will end up thrilled with how this plays out.
I regret in my last post I used the word slut! Note, if you read the post, I was not suggesting sharing a brain injury made people have loose morals or ethics. I regret using this term. I also dislike the fact that a ‘Player’, usually a reference towards loose men as being something to celebrate and receive a pat on the back for perceived conquests and all the terms for a woman that may choose to live a similar lifestyle is ugly and offensive.
The protest takes the form of a march, mainly by young women, where some dress in clothes considered to be “slutty” such as short skirts, stockings and scanty tops. In the various Slutwalks around the world, there are usually speaker meetings and workshops, live music, sign-making sessions, leafleting, open microphones, chanting, dances, martial arts, and receptions or after-parties with refreshments. In many of the rallies and online, women speak publicly for the first time about their identity as rape survivors. The movement’s ideology has been questioned and its methodology criticized by some.
While I choose to be single and celibate, as I have done most of my adult life since I was a young adult, when I wasn’t in a relationship. I have had a friend who chose a very different lifestyle. I never judged her and loved to have our catch-up brunches to hear all about them. So, I apologise if anyone was offended and I ask you read the rest of that particular post so you get the context of personalities living with brain injury and how I think I’ve developed my personality in spite of and around my brain injury.
Now, the fall-out to me not doing what I was asked to do (edit offensive words from my previous post) apparently could result in my blog link being removed from the website of the Not for Profit I’ve given my time to as explained above. You have no idea how much I had to negotiate to make that happen in the first place.
But if you know me? You know I don’t give in to such demands. It is MY BLOG after all and later this year I again need the support to remain a voting member on the board to help create change and support worthy projects, etc. and if I don’t get that maybe it’s my time to move on? Maybe I get a little selfish for a while, get it in my community more? Go do coffees and write. I have neglected my writing lately.
I do not know if people realise how busy I really am. But I DONT GOT TIME TO GO OVER SCORCHED EARTH! I’m not doing everything twice!
So lastly, I hope this explains some of the things and settles and calms any ruffled feathers from my previous post. Who knew right? And if you understand, empathise or appreciate what I’m trying to do? Please comment or hit Like!
There is an understanding within the ABI community, with the elders (if, ….) to that end, I say this in non-medical terms.
If someone has a life before they get their ABI/TBI, after this event and the fall out and dust settles, so to speak. They will retain that personality they had before the trauma. If someone was a player or a slut (I know, harsh words) or if they were funny, or love certain things. They will retain those traits after their ABI.
It is different when someone young, under-developed gets an ABI/TBI and even after an ABI/TBI etc, etc, the time often after the trauma improves. Five, ten, fifteen, twenty years, etc down the track.
I often wonder because I’ve had my AVM (my ABI) from before birth. How this has impacted my perceived personality. Because I think I’ve developed my personality and quirks around and despite my AVM.
Sometimes, time passes, not by anything big that happens in my life, but by the absence of people in my life. Despite, Covid blasting 2020 to hell, Australia started the year in flames (the bushfires) and I don’t spend Christmas 2019 with any of my family, so due to Covid, any of the reasons we would normally get together during the year, they normally travel to Melbourne as it’s central to both outlying parties, but we would normally do a nice exciting lunch, etc. This did not happen in 2020.
But the people who are really my family these days, are my carers. I know, you may think I’m always banging on about my carers, that’s because I see them more. They are consistent in my every day and they see the effort and subtle changes around my home as I maintain my independence.
And sometimes, what they do makes the passing of time for me. One of my carers during Covid took leave for 12 weeks. 12 friggin weeks!
To do a course via Zoom!
“Zoom” The other plague of 2020, I’ve had 1–2-hour meetings of which I’ve found to be torturous. She’s been doing 9-5pm. Just kill me now. KM!!!KM!! KM!!! KM!!!KM!!!
The first few weeks, her two shifts were covered and she picked up my Sunday shift. I sent her off with some foodie goodness to help lighten her load. I told her after zooming all day she would not be interested in cooking. When she was at the ten-week mark, I was happiest for her because the whole living by zoom thing. And before you know it, she’s only had three weeks left.
So, it’s odd I guess, I don’t have children, which is a busy way to fill your time. I don’t work, which if you’ve ever had to live by a three-month contract timeframe. Three-month contracts, it’s long enough to cause you financial burdens, but not long enough to plan a holiday or big experience, etc.
So, for me, time passes one day after another, after another and it’s FULL of all the appointments, the meetings, the planning for the bigger procedures throughout the year.
A few lunches with friends, maybe out to dinner once or twice and a once yearly comedy event.
You know those posts, I’m sure I covered all the things, but I don’t know how to finish. I am exhausted by all the things that pass time and don’t have the strength or nutrition to improve the things that help me pass the time, but still. Fuck you Covid!
Sometimes, when I get a new carer and I do my induction phase and ask how long they have been a carer and who they have worked for. I get an early impression they are ‘Good People’. “Oh, you have done palliative care”
Then I work out she loves an environment she doesn’t take direction; she takes over, which is fine if the mum is dying and the husband is just trying to cope, the kids are losing their mum and their dad is not completely there either.
That’s not my home and they can’t shift gears to cope. Nobody comes into my home and takes over; I don’t need that. This particular carer, some ten years older than me. Very early I worked out, did not have friends her own age. So, she quickly got all the naughty girl talk sorted. Even when I do that talk with my carers, I try to keep it G rated and I worked out she was a complete narcissist.
This woman very obviously wanted to leave early on a Friday so she could go be with her 13-year-old daughter. She did helicopter parenting via phone while she was meant to be out shopping for my groceries, then doing my home care (cleaning). When I mentioned while out with her that I have a blog, she rather loudly enquired if I was going to write about her. I did not answer, already knowing if and when I did, she would not be bothered to read it, nor would it be complimentary.
The nail in the coffin was at some point and when it comes, it’s the final straw. The week I took Jemima to the vet the final time back in 2018 and I made the decision hastened by the fact that I had tickets on the Friday to see a band in my neighbourhood I have loved from my teens and while Jamima had been getting older, I’d been putting off the decision and she might have lived longer, I felt I couldn’t enjoy going out for the evening and enjoy myself if I was concerned about Jamima at home. It was a shitty, rough week, I cried before, knowing I was going to have to do it, I cried before I even booked, I cried. Let’s just say I cried. Shitiest week ever.
On the Friday, I had the carer from Hell, who tried to cheer me up by saying it would be a good night and I deserved it as a distraction. I’m picking up the thread of this post three weeks later, let’s see if I can do it justice. Anyway, so Friday carer arrived after a shitful week of saying goodbye to Jamima and then doing all the spring cleaning and cleaning up after Jamima’s last evening in our home. So, pretty quickly, I told said carer about Jamima going to God! (Apparently the term is crossing the rainbow bridge!) and that I had an exciting night planned to go see a band in my neighbourhood I’d loved from my teenage years.
I kept saying to my carer it was a little hot and sticky, towards the end of her shift so I might need her help after to shower so I could go out feeling fresh and clean. She was one of my standard PC (personal care) carers so it’s not like it was a huge imposition. It is not like she hadn’t seen me naked before.
We went shopping, we did all the standard hunter/gathering and towards the end of my shift. Always planning to have a shower, I made notes to do so. This carer often became very distracted around 4pm, which is about the time her kids get out of school. That’s when she’d be checking her phone all the time and the helicopter would lift off. She had a 13yr old and her behaviour altered around her noticeably. Offering to water plants then ignoring me and going ahead and doing it anyway and ignoring me asking her to stop. My indoor plants are a very careful balance of how much/how often. So, I think she just wanted me to dismiss her early so she would still get paid.
A friend dropped in to commiserate with me over Jamima. She had been a carer through the council and had loved Jamima from the first time she met her, threatening one day she would leave here with a big bulge (of Jamima) in her pants pocket. I told her if she could get her in there, she was welcome. She also had a cat the same age as Jamima so was grieving her cat that would one day soon cross the rainbow bridge also.
While I had a visit from Mrs T, I closed the door to the lounge so I could have a moment of peace from the carer who was getting paid to be there. She did not like being left out. She pushed open the door separating us to join the conversation.
“I know how you feel!” “Yeah!” “That pearler!”
Then she told us how she once had to take the tube from her son’s throat surgery years earlier. Now, we all know it’s not a mother’s job to take a tube from their child’s throat after they have had an anaesthetic or surgery, right? If you are unsure? The answer is no. It’s the doctors or nurses’ job, because your kids will hate you for doing it, the doctors and nurses get paid for the privilege. Your mum has the soothing and parenting jobs/roles you love them for. You have a Boo-Boo? Mum kisses it to make it all better. FFS!
Anyway, not digressing at all. Mrs T departed and I was sad and the night was young. So, I made a move to have a shower, the carer on shift had not been at all interested in assisting me when I finally headed to the bathroom, she decided to tell me she was reluctant to assist me. She decided to be very passive aggressive obviously and inform me if I’d wanted to change some of the shift, I should have informed the office, which by this stage it was Friday after 5pm, so it was closed.
What a stress I did not need, she helped me, but it was very obvious by her behaviour it was imposition on her that she complete her shift and help my get ready. She left, I made coffee, got ready and my friend came when it was closer to the time the venue was to open, we left to go see the band.
It was early. Daylight savings so it was still daylight, the venue was the Thornbury Theatre and I was going to see MIdge Ure, whom you may or may not know from the 80’s synth pop band Ultravoxx. If you are into something a bit less beaty (and electronic) are cruise and good to sing along to. Try this:
After the gig we walked home again. My friend walking ahead of me to cut through all the spider webs spread across the paths doing her best 1980’s goth arm waving. It was still light out and the streets were quiet. Got home. My friend left and I cried. I missed Jamima.
So, this is what you do to solve having a fucking shitty carer. Monday, I rang the agency and asked to put a block on her. I was asked why? So, I told her, I had a decent rapport with my rostering woman, as I always make sure to do. She was surprised, to be honest she deserved an incident report, but I was just happy to not have her again.
Unfortunately, I’d left a CD in her car, offering to loan it to her so she could listen to something a bit different. It was the BEST DEPECHE MODE CD EVER, Ii’s circa ‘88! (called Violator).
I didn’t buy my CD copy until about ‘92 but it was an old favourite. I have all DM CD’s but by far this is the standout best album. I tried to get back my CD but she didn’t respond to my texts and when I escalated it to management, they told me if I’d offered it to her as a friend it was my loss. So, soon I changed all my services from them to my current two providers, with who I’ve barely had an issue.
Over three years have passed and I recently was in a box of CD singles and came across said missing CD. Would never have looked for it there, the carer had bought it in and snuck it in a box. She must have not intended to return. Stupid Cow! No, she deserves worse.