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.
There are these posts that I put off writing because I never want someone who knows me in real life to look me in the eye and quote any part of it and while I could start this post different ways, here’s how it is.
You know those days a friend off loads all their shit and drama on you within five minutes of walking in the door? No? Just me then?
Well, I’m just warning people the next time this happens, I may cut them off with this. If you get through the day and you didn’t end up in your ensuite with your pants down around your ankles, your Thundies around your knees with poo (You heard me) on them and your face on the floor in the corner.
Oh, both shoes off, your AFO still half on (Being the reason you fell off the toilet in the first place) and this is the clincher. An ink blot poo stain on your floor and poo on the wall (still not sure how that got there), then you have what we call first world problems. Sometimes a friend will tell me, ‘Oh Helen, everyone has problems.’
From now on I will direct them to the above highlighting ‘ink blot’. It’s a great image, isn’t it? If you’re not sure what it is, it’s the weird prints on the wall in a shrinks’ office walls, clients (sorry) ask “what is that anyway?” and the shrink returns, “It’s whatever you think it is.”
“Oh! It’s 2 people making love” Or “It’s a butterfly” Or “2 cows” Lol.
There’s nothing worse than being on the floor in a compromising position and having to work through what you must do in order to get up. That’s that!
I need to eventually roll over onto my right, straight onto my ass, naked ass, I will add, knowing exactly how cold that would be and then wriggle over to the hand basin. More wriggling, onto my knees, right elbow on hand basin then after pulling the second strap off my AFO, try to wiggle my left foot behind me and lever myself up.
Mostly, my right side leads on these adventures and I demand my left leg eventually pulls some weight. Add Pine O’ Clean, toilet cleaner/Napisan and Sard stain treatment, clean Thundies and pants and some serious cleaning in Aisle 2 (Don’t overthink it!) and I’m upright and ready to face the day.
Yeah! This happens to be the best of us and if someone tells you this kind of story, don’t pardon the pun – It’s pretty shitty.
I once had a carer arrive on a Saturday morning and when she saw my ensuite she asked, “What happened here?”
I’m telling you, I cleaned the bathroom, so there was no evidence of what had transpired in there the night before. I explained and to say it was of some similarity to the above and she asked, “Did you just sit on the floor and cry?”
I’m not saying you don’t want to, but it doesn’t help. You gotta plan your attack, do what you have to do to get up/get cleaned up/clean up the bathroom and get dressed.
If all you can do is get into bed to sleep off the trauma, you should. But sitting on the floor in self-pity doesn’t help.
Handwriting can tell so much about someone, doctors writing is said to be hard to read. I’ve found often illegible, because apparently, it’s because there don’t want to tell you everything. But alas, my handwriting in recent years has proven to be absolutely diabolical.
I write very small and often times my carer pulls out the shopping list in the supermarket and states “Okay, I’m good except this one?” She points out what she can’t understand. Often, I look and can’t either. “I’ll give you that one!”
Another customer might be close by and she will not realise it’s my handwriting. I think others assume we are shopping together for someone else.
Today, my carer held the list and she said “Blinky Bill?” It was a kid’s ice cream back in the day (80’s) It was about 3 ‘B’ words and I problem solve like this. Let’s just keep shopping, I’ll see it and remember I need it. We were in the dairy aisle, I called out, “Baby bocconcini balls!”
Luckily, we had already purchased them close to home. I guess I would put it down to my carpal tunnel and the sometimes RSI injury.
Osteo student and one of my Japanese carers who does a tape version of acupuncture, manage both of these issues for me but, it’s lockdown in Victoria during Covid 19. I’m lucky to have kept all my carers but, my osteo students who must cut their teeth with free clinic hours before they graduate. (They need to practice and cut their teeth in order to graduate.)
We have made our way out of the 2nd Covid lockdown in Melbourne 2020 and people have been talking about all the vivid dreams they were having. ‘Only during Covid’ I ask. I always have very vivid dreams; I greet my carers in the morning with “I had a crazy dream!”
They literally shrug their shoulders like “What’s new?” years ago, I had to start what has become a tradition. I said to a friend “I had a dream; you were in it” he then made a bit of a hopeful questioning noise and I responded, “Don’t worry we had clothes on” To his great disappointment.
So, ever since I’ve always stated that line on every comment when I’m telling someone they were in my dream the night before. You were in my dreams last night. Don’t worry, we had our clothes on and I’ve often received responses. “Why would you say that?” A little disturbed.
So, try it next time you have a dream and someone is in it. Tell them they featured and they had their clothes on. Then explain the context.
A few weeks ago on 8th of March it was International Women’s Day, ladies of all ages, I hope you did something to celebrate. I participated in a zoom meeting with around eight other women advocates in the disability world. Other groups I part-take in the energy is very different. The women only meeting was very supportive. We all shared some experiences. I definitely plan to participate in some more women’s advocacy groups. My artist friend contributed to the events and celebrations that day with this street art in Melbourne’s well known Hosiery Lane.
Now, if you have dick and balls, you know who you are. We do not want to hear, but we don’t have an International Men’s Day. Because every fucking day is Men’s Day. If you stop and listen for just two minutes you might realise why it’s so important women get a safe space, just for a day.
Just try to remember when the last time a man was disrespected and undervalued for his age, gender, abilities, seemingly usefulness to society and women with disabilities are respected even less. And at times, sometimes in an effort to fly under the radar, some women will keep their heads down and not support other women just so they don’t lose favour they feel they have curried, rather than support another woman and this is also unacceptable.
If you don’t figure this already, I’m a really frustrated fucking hormonal grumpy woman who mentions in groups mostly of men the symptoms of menopause and expect them to pay attention. I am currently sliding into the Pause and not enjoying the symptoms. I don’t suffer embarrassment on this topic, but I know some other women will just drop out of sight until all the symptoms have passed.
A male friend recently told me I just needed a shag (Not the word he used) so, I thought this friend was better than this and now I realise my work here is not over either For Fucks Sake!
So, ladies lets be more supportive of each other and let’s be the change we want the world to be.
You know these days where you are going to have a ranty rant and you will be perceived as being old and grumpy.
I’m saying to the ‘older generation’, I got this, I’ll take this one for the team. What the fuck is it with buying products these days? You get them home, undo the packaging and in between the bits and pieces and all the faff. No fucking instructions!
Would it fucking kill you people, it’s not rocket science? It’s not that fucking hard. OK, I’ve probably exceeded my acceptable level of F-bombs in this post, but seriously, FFS!
Oh, what’s that? You want to know what I bought?
A small traveller at home kit to do a little waxing. Just thought if ever Covid lockdown goes past the Spring, thought I might want to do my legs. Or to be fair, I can’t inflict this kind of pain on myself, but will happily train someone else to do it for me.
Had years of being tortured by my beautician who is way too efficient. Not enough time to inhale and let out a sound of pain or torture. Oh, but of course there’s a damn web address I must do research.