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Busy

Published October 18, 2021 by helentastic67

Busy


I have never known how to not be busy. I’ve always been busy. When I was 16 years old (yes! back when there were dinosaurs!). In the 1980’s, I was a full-time high school student, I worked part time as a checkout chick. I was doing hours of art folio preparation to get into college, I was a live-in babysitter to baby sister and I definitely didn’t have time for a social life or boyfriend. I did the household ironing and more than my share of the housework.

All while planning to be a poor art student, didn’t do a 4,000-word assignment until my first year of tertiary. I was still living at home then and it was all hand written. No computers, so many drafts, then only the battle of whiteout back then. You kids don’t know how good you have it.

So, it shouldn’t be a surprise that when I moved to Melbourne to be a poor art student when I was nineteen, that while being a full-time student, I transferred my supermarket job so I was working part time and being 100% responsible for my shopping and cooking. I introduced a little social outing in the form of going to clubs. I met one woman at college that went to a big commercial club very close to me. In simple terms, it was a very big wog club that was like a meat market. Huge dance floor in the middle of the room, upstairs, you spent much time going for a walk around the perimeter with a friend. As you travelled around a line forward and you just kept to the left. To your right was a line of people going the other way. As people passed on your right A guy’s face would loom into you to go for a kiss. Brushing them aside, all of a sudden, they would be pulled away by their girlfriend who had them by the hand and asking why they seemed to be holding them up. This is not why I stopped going to this kind if club.

The first few years I studied in Melbourne (two years actually) and I would go home long weekends and maybe a week of term break.

At Christmas, I’d transfer my supermarket job back to the country and also pick up seasonal work in the farm of blueberry packing. The last season I did some picking too, but while very stressful, packing paid better.

But to take a break from study and be at home in the country over Christmas meant I was literally working from 6am until 9pm with only a few hours off in the middle. Not even after college, I picked up some work in retail and clubs, which I literally set the hours according to what I considered it required to ‘get the job done’. So, my weeks, day and night were full.

I guess I’m saying life before my disability was always hectic, maybe why little symptoms I could later contribute to my AVM diagnosis went unchecked. So busy, my life has always been busy and I’m sure it’s not the last time I will cover this topic, or topics.




Magnificent – Continues

Published October 11, 2021 by helentastic67

Magnificent – Continues

Later that night, I discussed my legendary stopping traffic in Burgundy St Heidelberg and my mum was all like “Omg! You could have been killed!”

Seriously, now she cares, I’m kidding, she cares. 

I mentioned again the above to my Heidelberg taxi driver Sean (is his real name!) and his reply that was simply put “Cabbies like pro-active clients!”

Nailed it!

I like to imagine I’m aware of my surroundings enough to not put myself in danger. I also like to imagine (call me crazy!) that nobody has enough insurance to hit someone with a disability.

And if that Gold Merc driver had been any danger I wonder if he would have appreciated a walking stick imprint in his boot?

I knew he would have been all “I’ll sue you!”

I would have been all nice like “See you in court!”

I wonder if the judge would have been empathetic. 

So, yes! I’ve thought it all through.

Magnificent

Published October 4, 2021 by helentastic67

Magnificent

I have to say, today was magnificent! Wait!

I went to my first of two appointments today in Heidelberg. I have made it a habit to walk to a local take-away shop to pick up a vegetable pide and I book a taxi from there to scoop me up and get me home. 

Today none of my regular taxi drivers could fit me in so, I rang for one. What’s the damn address? I get to tell my regular guys simply ‘the take away place’ and they manage to get a park across the street or call me to tell me they are around the corner. I waited.

I noted there were no free parking spaces for a taxi to pull in. It’s a very busy shopping strip where traffic is non-stop. Car spaces open up and are taken again very quickly. Some spaces become available. I message to see where my taxi was and had the option to speak to my driver that had accepted my booking. I spoke to him and told him I would step into an empty carpark and he could pull in.

I stepped into the back of three empty car spots, in a row of cars, a car went to back into where I was. I shook my head and moved towards the passenger window. I briefly explained my dilemma. 

“Taxi coming to pick me up. He would need to pull in.”

This was fine. He pulled into the middle carpark and as he was getting out of the driver’s side (on the roadside not curb-side), another car also considered parking where I was standing. I stood firm. I looked through the car’s rear window. I could not make eye contact. I should point out; I should be wearing a face mask as Covid is a thing.

I stood firm, other cars were lined up wondering what was happening. I looked to the driver trying to steal my car spot. He was driving a vintage gold Merc.

Say it with me now, three things wrong with that sentence. Ok, two. Vintage is ok.

I realized the driver was an older (he was old!) Greek man, I shook my head, “no!” at him. I pointed to the Audi in the road, waiting for this situation to be resolved. I did my default stone face. “I’m not giving in!” and shook my head again. I asked the man who had parked by now if he could tell the old Greek man why I was not moving. He explained to me that he could not see me.

How could he not? I am dressed in the standard uniform that is Melbourne. BLACK & BLACK & BLACK, TODAY. It’s cold, the end of summer but finally we have some blue sky. 

Quite frankly, just happy it’s not 40 degrees in the shade as it was a week ago, because I could not wear black.

So, where was I?

The Greek man in his vintage gold Merc drove away. I had indicated again to the Audi waiting for traffic to be resolved and traffic continued to move. The man and his wife got out of their car that they had picked and the husband told me the old Greek man had been none too pleased. I smiled and said I had noticed he was rather grumpy.

My taxi driver pulled in and I unloaded all my handful of yeah, bag, walking stick and things. And the day went on.

There are many times I stand my ground as a not young, hot and sexy something-something woman but I will always stand up to people like my disability didn’t happen because there are certain things I don’t stand for.

I am magnificent!

Normal Friends

Published September 27, 2021 by helentastic67

Normal Friends

In my earlier years of having case management, I mentioned as one of my goals that I wanted some normal friends and contact with the outside world that didn’t constantly throw me in with people with brain injuries or depression/mental health, etc.

I mentioned it specifically like this as my previous C.M. had a tendency to favour the ‘Clubhouse’ their organization ran. I would joke that they literally did a drive-by, push the door open and shove you out! Exclaiming “Have fun!”

My monthly meetings with my C.M. went on and while trying to maintain my independence, find funding for the different things, refer me to O. T’s and all the ‘other’, more attainable goals finding ‘normal’ friends was always pushed to the side for more important and pressing things.

This new potential friend was occasionally mentioned to me and because I insisted on more details, I was assured she was witty and smart. I confess, I don’t have much time for slow, dim-witted people. 

What? My brain doesn’t have much time for. C’mon! Hurry the fuck up! I can’t help it. My brain is busy and Stephen Hawking I am not. But, over time, I was volunteered more and more info about this new potential friend. I had not been terribly keen as she was living across town. I don’t have the energy to get to the people I already know and love to go across town.

Are your spidey senses going off yet?

Mine have been from day one. I should point out, C.M. works like this. I self-referred. They come see you or vice versa, you sign contract, they get paid.

Everything I said I wanted and needed, which they said they could do, they fuck all did.

They did the easy things.  They only met with me as often as I insisted because I pestered them and because I’m fun and cool and amusing. Imagine, if someone isn’t cool or fun or can’t implement Pester Power?

That part of me is still in that childlike era, I do exceptionally well at Pester Power. So C.M. tried to shake me loose. “Hey? We haven’t done all the things yet!”

You realise, you sign that contract, they get paid and if you don’t keep on them, they can get away with never seeing you again.

So, the C.M. let slip one day, could I help the client with her rostering of carers? She couldn’t manage her roster, didn’t return calls, couldn’t schedule, etc. Could I help her with that?

So, she wanted me to do her job now?

People often don’t even realise I have a disability. Well, several really. So, they see me upright and walking and talking and smiling until one day I make a BOLD statement and people are shocked into a different idea of Helen’s normal.

Tuesday

Published September 20, 2021 by helentastic67

Tuesday

Had a crazy Tuesday this week. Now it’s Friday and I’m sitting at my fave café for what has become my new normal day here to lunch and write. It’s the Covid normal.

In my early days of diagnosis, I felt the need to explain my life was less Brain Injury and more normal and my first specialist explained I was a high functioning ABI.

So, Tuesday was a bit more crazy than usual. This is probably a good example of me being high functioning. Keep in mind, Helen is not a morning person.

9:15am – Usual carer arrives for Personal Care. She does all her chores and I do mine.

I make breakfast and sit to eat. (Slam down my entrée of pills)

Turn my phone on. It starts, the bells and whistles, texts and calls and messages. I don’t know why I need to go off grid on the weekend.

I call and negotiate with my young John to get me to my first of two appointments. He can squeeze me in.

11.45am – I’m meeting my Neuro Physio. He sits on the floor trying to stretch out my left calf and front ligaments.

I have been diagnosed with a clunky ankle. It’s an official medical term. It’s causing and adding to my knee replacement one day. It’s already nice and crunchy! (My knee)

So, he’s doing him. I’m doing me. I’m checking texts, sending texts, then I’m required to stand favoring my left side and sit, twist my upper body towards my left to help my leg and foot do leg and foot. 

To be clear, all this teases my brain. It’s not super fun, because my right-side brain is saying “you want to do what? Get firetrucked!” (Trying not to swear!).

And I’m dealing with one of my two agencies to fill a shift, the following day on the Wednesday.

It’s a 6-hour shift where I get escorted out, I do the things, we have lunch either out or at home and I set them chores while I scooter out to other appointments, they don’t need to take me to. It’s also when I fit other things in where I need muscles and things that I can do by myself or on P.T.

It’s a 6-hour shift. The texts from my agency go back and forth. Eventually, I’m offered 3 hours which I later describe as like putting a band aid on a bullet wound. It’s a great image, isn’t it?

I was responding that I could offer their shift to my other agency, as in the whole shift 6 hours. What pretty band aids on either side of that 3 hour. I need the whole 6 hours.

I mention via text, I’m in the middle of something and I need to be present in my appointments, but then I get a rather long shitty text stating they had spent 4 hours messaging other carers and clients to find me someone. It sounds like they think I’m ungrateful. The grumpy text ends with an apology for the text. I am now getting busy – this is eight days after I started.

Hopefully I can do it justice. But otherwise, could be, I didn’t get to read her whole message. I got the gist and immediately texted my other agency and if the person was not in the office, I rang them directly. 

When I rang, I could even interpret the pause and inner office convo that happened in the background. A carer they have been wanting to send me for some time, they were just waiting on an NDIS checklist.

I confess it’s been two weeks since that fateful day. So, while this may not flow seamlessly from the previous post, I hope you can keep up?

So, I text the agency who is choosing to do their job the hard way, that in the middle of two appointments I need to be actively present at. I’ll get back to them.

It does already look like I’m covering the following days shift myself another way. I flick a text to my other agency. In case that staff member wasn’t in the office that day, I quickly call.

“What’s that?” I’m on the phone while my Occupational Therapist, (OT) who I’m just meeting for the first time is with me. “No, I told her she could absolutely go pee.” Respectfully, that makes us friends for life.

I call the agency and I can tell exactly the conversation that’s happening in their office.

“Oh, send X, Y, Z!”

“Is that Helen? Just fill that shift!”

There is no better motivation than me missing a specialist appointment because their afterhours staff member fucked up my Monday morning. My Botox appointment was rescheduled for two months further away. Botox keeps my left toes from curling (I know. What?). Yes! Botox in my leg.

Anyway, yes. The NDIA survey has been completed and X, Y, Z can cover my Wednesday shifts until my other agency can cover it again.

After my OT appointment, I head out and call my Heidelberg taxi driver. Young John is best at this time and so is Sean! 

I hoof it to my far local pide dealer. Pide is not code for anything. It’s just where I get my vegie pide from. Another taxi driver has arranged that I can wait around the corner to make life easier. 

On the drive home (10-15 mins) I text the first agency. I confess I was pretty grumpy earlier and wished to call my support coordinator to growl at the agency because I just didn’t have the bandwidth to give the polite diplomatic response.

Yet, I messaged something along the lines of, ‘I appreciate how hard it is to fill shifts when my regulars are away or don’t have a weekend. Then something that I genuinely did appreciate her efforts. Despite that, rather than ring me first to ask if she could wriggle things so she could cover three of the six hours of my shift. Would it be enough?

Sometimes it is but this particular day, I had placed other things in around and in between the appointments that required wheels and muscle.

I did all of this with a migraine.

So, that shift was moved for a month or so to another agency. 

The following Tuesday I received a message asking if I expected them to cover my Wednesday. I had to remind them I’d moved it temporarily. This is what happens when someone tries to cover a bullet wound with a band aid.

Who Am I?

Published September 13, 2021 by helentastic67

Who am I?

My name is Helen, I started blogging in 2015. Since then, I’ve written over 600+ blog posts and acquired over 280 followers all around the world.

I’ve really let my blog speak for itself and not really marketed myself in any commercial way to gain a larger following.

Pre-Covid I was sharing three posts a week. Hellonwheels, is me doing brain injury differently. I’ve had my brain injury for over 48 years, only learning I even had my Arterial Venous Malformation (AVM) at aged 34 when I was really stressed, as a result of workplace bullying. After diagnosis and treatment, I have been left with stroke like symptoms.

It’s not easy being a high-functioning Acquired Brain Injury (ABI) and it’s even harder to explain. I have a good memory, a love for music and food – things some people with brain injuries can’t enjoy.

I’m a single-barren spinster, often including further descriptions, straight and fucking fussy!

I have strong opinions, which may or may not appeal to everyone. This is why I include stories of my past, little moments of life, foodie posts and beautiful things from nature. 

Life is short and often few moments or opportunities go past, so I try to share the ones that I have.

I hope you will take a moment to look up Like, Share and Follow. 

Go With God

Published September 6, 2021 by helentastic67

Go With God        

There is a weird thing in disability circles, people join groups to find their tribe. You know, other people like themselves.

There is this thing about power in numbers, etc. But I wouldn’t want to be in a room with a heap of people with depression. What do they call that?

A goth club?

Never mind!

Those miserable looking goth kids, from the 90’s? Happiest kids you will have ever met. But, some people with disabilities or brain injury have a tendency to compete. No, really!

Oh, you think that’s bad?! I have this!

In reality, it all sucks. People will imagine their experience is something like what you can imagine or worse than you experience. I like to remind people there is always someone worse.

A guy was in a coma for I don’t know how long. No idea the cause of his ABI or how long he’d had it or anything. However, he seemed very happy and smiley despite his lack of ability to keep his sentences on track or contribute in a big way.

In his coma he was kept company by the radio. I do know, he came out of his coma to a song on the radio, “Stairway To Heaven” by Led Zeppelin.

He would smile fondly…

Did they not think that was wrong?

Did they want him to wake up, or Go to God?

Great Adventure

Published August 30, 2021 by helentastic67

Great Adventure

I always love a reason to get out on hellonwheels, my name for my mobility scooter. It’s also a great way for me to connect with people and change people’s idea of what disability looks like.

The adventure on this particular day, was to get to a dental appointment. I wanted to park my scooter inside but not in the waiting area, in anyone’s way, there is a small vestibule with two automated doors to navigate. So, I got a spot I thought was out of the way. Then I stepped back to assess and then saw this, can you see what’s wrong with this picture?


I decided it was still the best place for it. I stopped to mention it to the Covid Nazi just inside the entrance. She was making sure to check everyone in, take temperatures and quiz everyone on the likelihood they could have Covid. Don’t take my Nazi comment the wrong way, it is what it is and I still have not returned from overseas since 1994. Stop asking! It’s really starting to grate.

Anyway, I digress, I mentioned my parking location and suggested if firemen were to attend, they could pick up my scooter to move it out of their way. She said she thought it would be fine but I had to correct myself. “If they are *Hot* Firemen. Come and get me and have them move me on the scooter out of the way” Yes! It’s inappropriate but who smiled while reading that? She smiled, I got to tell her about my blog and I like to think it made her day.




Special Edition

Published August 23, 2021 by helentastic67

Special Edition

When Melbourne came out of Lockdown for the blink of an eye.

Today is a very special edition of HellOnWheels bought to you by the letters C & not for the obvious reason. 

Today was the first day Melbourne was coming out of the harshest lock-down reported in the world. Today was the return of cafes being open and being able to dine in. During lockdown my Girl Wednesday/Friday and I have been doing Car Cafe sitting out the front of, wait for it. Introducing https://www.cavallini.com.au/

Finally, I’m telling you all where I go to eat and caffeine. Also, I write and where even during lock-down I would walk in and be greeted with a “Hi Helen. How are you?” 

It’s even more special today, because, anyone want to see Bruce Willis with actual HAIR? You’re welcome!

Now, today’s special offering. I previously just called this the salted caramel, chocolate, chocolate thingy thing, but it’s actually called a Maltalbarno. This week I would arrange several coffee dates here with friends so I can share a slice of this over coffee to help me celebrate and to share the calories. Calorie’s shared is calories halved right? 

I wish I could say I’ve been laying low during CoVid lockdown however; you can leave the house for several reasons. Number 1, Medical appointments and I have had plenty. Including a Brain-Scrape (yes, Covid test) I passed. So, I could go have my first Colonoscopy. 

Yeah, cos I’m “that” age and because my father had bowel cancer before 60. He survived. Not complaining. But it means, fifteen years before the age he was diagnosed I needed to start getting tested. Super! I was a bit overdue, but I’m good. I passed too. I’m good for another five years.

Just enough time to forget how disgusting the nasty prep drink is. No really. It’s hideous! I will do a post to share my great jokes I gave them before my procedure and the challenge I set myself after the procedure.

I hope you are all staying safe and getting tested for CoVid and well I guess bowel cancer too.

I will also add I’ve seen my father three times this year, I didn’t even see him at Christmas. It’s normally the only time I do get to see him. But I only got to see him because he had a heart attack. For Christ’s sake! He drove himself to hospital (in the country) because, I’m told it’s a “Wog-Thing”! Don’t worry, the nurse gave him a talking too and open heart surgery and three months later he is finally “getting there” so despite the “Fit hitting the Shan” in 2020, we could be coming out of it. Optimism, right?

I’m trying it out. Leave me be.

To be continued………….

Opening Doors

Published August 16, 2021 by helentastic67

Opening Doors

Yesterday I went to the launch of a project I helped with called Opening Doors.  I’ve shared the website in the past but in case you missed it.  Home – Opening Doors

I met an advocate there, who deals with people who may be in crisis situations and they become her clients. Example: Couple about to take a newborn baby home where they are living in a brother’s garage. They already have a 4-year-old who is in preschool and because I asked questions, you would imagine they could just move into a room inside the house, so what’s the issue?  They already have three generations living inside the house, twenty people so, no they are stuck in the garage. The top number one question they would get asked. Are you on the public housing list?

Anyone who is on that list, asks when will they get a home?  How long is a piece of string? That is a list you need to be on, but it doesn’t guarantee you will get anything.

So, the significance of one’s home is even more important to anyone with a disability.  It’s a place to be safe, to keep one’s precious things, to build important memories, to regroup at the end of the day, to replenish energy, to sleep. Then to get up the next day ready to fight another day.

So, in short, keeping this in mind,

·         Brain injury: 47 years

·         Moved out of home at 19 years

·         Moved lots until 30 years

·         Diagnosis of ABI at 34 years

·         Since treatment at 30 years, onset of severe disability where I can no longer work and need care.

·         Have moved: 4 times!

Keeping in the back of your mind, I had a boyfriend, sorry I thought I had a boyfriend when I first developed my disability. I digress or context done.

As I mentioned my situation to the advocate, how many times I’d had to move since my disability and while in comparison to her clients with the new born baby, I had told a friend that finding decent housemates since my disability had been like getting my heart, soul and wallet robbed by complete strangers. A friend had bitched to me when he had his disability, he had, had to give up his awesome housemates and he couldn’t understand why I had not been more empathetic towards him.

So, I pointed out, while I’d moved four fucking times and had lived by myself for seven years or more, renting. His family bought him a fucking house!  Now admittedly his house is in the outer suburbs, he owned the house. No renting.

and now 10-15 years later, he’s moved into an apartment in Abbotsford where he can walk to the city and he still thinks I should be all empathetic towards his plight.

Sound bitchy don’t I?  Yeah, the inner bitch comes out occasionally.

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