Why I Blog

Published January 26, 2018 by helentastic67

Why I Blog 1

Why I Blog?

If you have been wondering with a weird array of randomness, what Hellonwheels is all about? Wait no longer, this is why, here is the answer.

Since my diagnosis in 2007? (I don’t know! It’s been a blur) I’ve met many people with ABI/TBI/general fuckwit-ism and it has led me to query, what means what?

Brain injury

Example;

When I first started going to ABI groups socially, because society loves to put you in contact with people with the “same” issues you have. (Please note eye-roll!) I walked in and young men and old flocked towards me, I felt like a Spice Girl in the mid-90’s. One guy, let’s call him ‘Fred’ (because it’s been a while) made it clear to take me under his wing. We got chatting, as you do and as you do you talk about your life before the ABI.

Spice girls

I mentioned my Club years and that’s always a big topic. But, push came to shove and after a little young woman joined us and I was introduced. Lovely younger lady, also with an ABI. Make mental note; got to be careful or might end up ‘paired-up’ with another numpty like me before long if I’m not careful. I didn’t say this reason/story would be simple so stay with me.

Numty

Totally worth it, Promise.

Over time, I participated in activities at this group and I supported people and they supported me, so all is well. Became friends with Fred and others outside this group. (it’s inevitable: stuff sticks sometimes) Fred had gotten his TBI from pure fuckwitedness (as I like to consider it) his girlfriend was lucky to be alive having been hit by a car crossing the street. But, unlike her boyfriend, she had not had a typical young adult life, like he had, had before his TBI, because she had, had hers at 17 years-old.

Fuckwitedness

He also liked to bond with me because I had been ‘there’ (Clubs/parties) and I remember it. I wasn’t drunk and off my face like nearly everyone else.

Overtime, I became a bit more of a mentor to Fred. I was friendly to his girlfriend, also she was none the wiser. He was also finding excuses to visit socially. FYI: I don’t socialize at 11pm at night, that’s my time.

Mentor

He even had a gay friend drop him over for a coffee one afternoon on a weekend and I was told to ‘look’ after him.

I hope you are getting that he seemed to have told people, I might have been a potential ‘whatever/girlfriend’ when in reality it was always a HELL NO.

Hell No

I decided to discuss this situation with a friend who worked in the industry who was familiar with all of us and our past history etc, her advice to me was.

‘Oh, you should go out with him, because before his ABI, he had four or five girlfriends at a time. Now he’s only got one or two.’

WTF!

Um, I hope you realise, I would not have dated more than one guy at a time before my diagnosis, let alone date a guy who thought he could date more than one woman at a time, I certainly wouldn’t now.

I am also aware I am no longer some Jennifer Hawkins type, now or before my disability, however I’m still not prepared to lower my standards and just accept some broken bit of road kill.

Body

Make mental note: Explain Helen’s definition of Road Kill later.

Road kill

So, back to my point. Yes, apparently it is said, people retain their personality after their ABI/TBI what did I call it? That they had before their (as above).

Personality

Now, this is why I blog.

If I’ve always had my ABI (AVM), have I developed this personality, because of my AVM or despite my AVM?

BAM! There I’ve done it.

WRONG, WRONG, WRONG

Published November 3, 2017 by helentastic67

Wrong

WRONG, WRONG, WRONG

Every time I see some TV personality on TV, talking about when it’s acceptable behaviour to have sex in a public disability toilet, it sends the message that it’s acceptable.

Sex in bathroom

It’s really a culture of anyone who doesn’t have a disability to not use those toilets.

It’s particularly abhorrent to me when I’m trying to get to and use a disability friendly toilet in public, when people are inside it using it for their own selfish gratification.

Self gratification

Hear me when I say, choosing to be celibate doesn’t make me a prude. I just think it’s totally uncool. I mean, really, are you 14? (that being an age of childlike behaviour still) not acceptable, just ‘young’ I mean. GET A ROOM!

Get a room

Review

Published July 21, 2017 by helentastic67

Review time

Review

Because I don’t have enough on my plate! Remember all those things I was advocating? Well, shit just got more real!

Who wants the purest definition of a Permanent Disability? Well, Centrelink, the Government agency that pays my Disability Support Pension. They want to review my pension.

Centrelink

This also requires me to attend a JCA appointment. Sorry another acronym. The worlds in full of them. Job Capacity Assessment.

Firstly, they head up a staircase, I stay at the bottom and say to her (It’s generally a her) I don’t do stairs. She comes back down and we both go up in the lift. It’s like the first test to see if I’m really disabled. One point, Helen, JCA staff – zero.

Stairs

Hopefully they will assess my specialist reports and meet me so I can explain what it’s like just to sit in their office and they will be happy. Permanent is permanent.

Well, as reported recently that Stupidlink did decide I was still eligible for my DSP, it’s just that it took them 18 months to work this out? Maybe not quite that long but it felt that long.

As I like to explain Brain Injury. You can’t unscramble an egg!!!

Unscramble eggs

Irony

Published June 30, 2017 by helentastic67

Irony

I imagine Irony has taken on a whole new meaning since I’ve developed my disability and it’s going to require some explaining so hang tight and buckle in!

Buckle up

HACC Services provide my carers through State Funding. It subsidises the fees so instead of me paying $40.00 per hour, I only pay $2.00. I get a carer 3 – 4 days a week for an hour and on Fridays I have shopping or Homecare, it all starts to add up.

With the roll-out of the NDIS, the council still gets funding from that bucket of money, but because they will be expected to offer more hours to their clients, they would rather utilise that funding in other ways.

Like ‘Tourism’, apparently, I have no idea! Don’t ask!

tourism

That is another point for another day.

I digress, my council also has a DAC! Sorry, another acronym – Disability Advisory Committee.

It is very heavy on council staff, such as ‘Tourism’ and service providers. However, the irony is this: ‘My council loves people like me to go volunteer my time to share my opinion and input so they can better service their community.

A survey I participated in recently, tells me they are far more interested in not offending the LBTG community, than looking after the people with disabilities and when I say that I’m not meaning any disrespect to Gays (love them) Lesbians (Thespians as I like to call them), bi-sexual (yeah, I know, you just love people to work it out and when you decide, let me know), Transgenders.

LGBT

Be brave! Be who you want to be (anyone else has another opinion, you should do what’s right for you and let everyone else do what’s right for them)

Hope I adequately explain my opinion, quickly and succinctly on all those topics!

The bottom line is I don’t have time to give my time for meaningless surveys.

Survey

Mother

Published June 7, 2017 by helentastic67

Mother

How’s your mother? I always get asked by my carers… My mum who was here for less than 24 hours, last week to smash some appointments and things.

My mum is really the only family member to support me and she also manages to be my biggest critic.

So, it’s often somewhat tongue in cheek I reply with a smart mouth “she was alive when she left and so was I”.

Smart mouth

My mum and I have come a long way in the last ten years, in the early days of my disability, she was mid 50’s and she would come down often once a week just to take me across town to my physio and OT appointments.

Mum lives about 3 hours away in the country in a lovely isolated valley where there is NO MOBILE RECEPTION and when I go home for Christmas, mum and my younger sister cannot remember their internet password. So, for me THERE IS ALSO NO INTERNET!

No internet

Admittedly their internet is so little and so slow, it’s better to just let emails pile up. I’m less inclined to lose my mental ‘shit’ and want to kill people.

My internet is fast and reliable at home. My mum reminds me every time she visits when she claims “I just detected 400 emails”.

Fast internet

Yeah! She only visits for my fast internet, I don’t mess around with internet or computers when they don’t work, I have visual images of Jackson Pollack paintings. Anyway, I digress as per usual.

It is rather typical of family members when they are carers for people with brain injuries and disabilities to verbally spar with each other.

Most people with brain injuries I’m sure it’s like torture and torment because they lack the verbal skills or mental capacity to give as good as they get.

My mum probably doesn’t realise she should count herself blessed, I have a smart mouth and deliver her a sharp retort at times, despite it offending her. Because the early years I used to bite my tongue until I realised Passive/Aggressive didn’t help me.

Smart mouth 1

Nothing was going to change if I couldn’t let it be known. Clearly, we have had many opportunities for a difference of opinion, on this whole topic.

But what can you do?

Mum 1

Life

Published May 12, 2017 by helentastic67

Life

If you’re not living; You’re just waiting to die. I’m often forced to re-evaluate what life is all about.

My dreams

I used to think life would be about having my own family, my ideal picture more recently being a husband and cat and dog. A mortgage (likely) a career, a business of some sort and enough freedom to afford a holiday to foreign shores every now and again.

crazy disability

Since my diagnosis and then my disability, some of these things have faded from being possibilities or a reality?

In many ways, I do feel like I’m just passing time and I’m not sure what life is meant to be about, in the big scheme of things. I’m still trying to make a difference every day with the little things I do and the everyday interactions, but right now I’m wondering what I should be doing differently so I’m not found months or years after I pass away, unnoticed by the world in my armchair as an old lady surrounded by 20 hungry cats…

Cat lady

Young John – Part 1

Published April 19, 2017 by helentastic67

Taxi Driver

Young John Part 1

Now if I do this correctly, you will cry. Get your box of tissues and if need be, pinch yourself to cry if I can’t do it sufficient justice.

I don’t hate many people because it’s an emotion that is a waste of time, however most people wouldn’t be aware (should you need to know) that I went to High School with Victoria’s current Premier. His name is Daniel Andrews.

To be clear, we were not friends, he seemed an OK type, but I had nothing to do with him one way or another beyond a polite ‘hello’ in passing.

Daniel Andrews 1

But these days, if I saw him I would want to slap him. Probably not in the face, because don’t think Orange suits me, but definitely on the back of the head, like a naughty child.

I say this because I’m lucky enough to have a lovely taxi driver in my life.

His name is Young John. (Get the tissues ready!)

I met Young John about seven years ago, when I went to a local Physio/Rehab centre. He car-pool’s people into the centre. That first day Young John’s yellow taxi pulled up in front of my home and as I stepped outside he called out his greeting “Young Helen”, I instantly assumed I must be the youngest person he had to transport that day. I got in and we drove off. We chatted and when we pulled up for the next person, he got out and greeted the next guy “Young George”. Now George may not be his name, I can’t recall, but “George” was not a day shy of seventy and had, had a double hip replacement.

Young George was helped in and we started again, then conversation flowing easily.

Now, I suspect Young John calls everyone ‘Young’ so as not to offend them. Just like you see a Grumpy Old or vicious dog in the street and you want to pat them, you call them ‘puppy’ and they all seem to melt.

I probably should mention why I want to slap the current Premier for Victoria, said Daniel Andrews?

Daniel Andrews

Young John came here when he was too old to go to school, so he got a job in a factory until he was old enough to get a driver’s license and drive a taxi. He pays so much money to maintain his taxi license and has often driven 7 days a week for 40 years.

Currently, the Australian Government is trying to buy back all the taxi licenses for a fraction of their value. And reissue them to move taxi drivers for much, much more than the previous owners are compensated.

And this is just a tiny rant because I don’t have the time to unpack all the things wrong with Uber and the corruption that is Uber.

Uber driver

I will never catch an Uber and the many, many people from disabled, to elderly to intellectually handicapped that Young John ferries around Melbourne every day will not catch an Uber.

Young John is like my adopted father, often every week day I send him a text message suggesting a pick-up time and location to throw me out. Ok, deliver me in one piece. He responds with an offer. I continue the negotiations and often scooter on Hellonwheels to my final destination locally and walk a small block to where he is often waiting for me.

I get in to him saying “Princess! You’re driving me crazy! I’ll call your mother!” I respond with a prompt “Stop it. You love me!”

Princess

There is a great respect and appreciation tween us and I’m always happier for seeing him and having some friendly banter.

It being a Wednesday today I imagine I think he will be happy when I report he is on his way to being a star! As only he deserves!

With love! Young John.

Love you

Family – Part 2

Published March 13, 2017 by helentastic67

Family Pt 2

Family Part 2

I’ve been procrastinating this topic, because it’s not an easy topic to cover. I don’t know how other bloggers deal with this however, maybe I should be able to say what I like and if family can’t cope, they can start their own blog. However, what generally would happen would be that any assistance I currently have from family would quickly dry up.

We like to imagine that if someone is sick, has a disability or is dying (I’m not dying in case you’re wondering) empathy would kick in and any other ‘issues’ you have had with that person or family member, you would be the bigger person and put it aside, get over it or just move one.

I luckily, have both parents still on this plain, they are 66 and 67 which is younger than most of my friend’s parents. And they have not been together for the last twenty years.

I also have two surviving siblings. My family was rocked by severe grief when I was only 9 years old, when a younger sister died from cancer.

People don’t know how to deal with grief, so they stay away. Apparently ignoring a situation that makes people uncomfortable, makes it easier. So, our family pulled through and when I was a month shy of my 16^th birthday there was another baby in the house.

There I was at 16, a full-time student, working a supermarket job, 15 hours a week (Yes! I was a checkout chick) and changing nappies and babysitting. And preparing (like there was any time) to spread my wings to move to study.

I should point out over Christmas, I had several jobs to help save for College.

This sister is now 28 and living back at home with my mum in the country.

It’s hard to bond with this sister as she has been raised by mum only from the age of 7 and while she moved out of home to study for a few years, she’s now back at home, working and saving for the things in your 20’s. Like travel.

I attempted to bond with her over GOT (Game of Thrones).

Game of Thrones

She watched the 1^st season and decided she wanted to read the books, then mum decided to read the books before they would watch it together. And I’m out…

My older sister actually lives closest to me, about an hour away and I see her less than 5 times a year.

She and I lived together twice in my 20’s and to say it didn’t go well, would be an understatement. Other than I didn’t get a real job, I’m not completely sure what I did wrong to offend her, but when we are together, it’s hard…

Sisters

Where Was I?

Published February 24, 2017 by helentastic67

where-was-i

Where Was I?

I gather you have noticed my departure from my main message, which was to educate about ABI (Acquired Brain Injury) and disability. There has been a perfectly sound reason for that. And that is two things, if it were to be all about being popular, brain injury/disability is not popular!

education

Brain injury and disability and these 2 things for which I qualify will never make me a million dollars. I will try to prove that statement somewhat incorrect because as I see it, I need at least a million to afford a home in a suburb I would like to live in. I live to prove people wrong – You Know It!

myth-6

And because ABI/Disability are not Sexy!

I’ve had several ‘lives’ in terms of my ‘Poor Art Student’ years, then the poor but busy and happy club years, then my “Oh My God” Real money admin years when I’d go home and be happy to not pick up a phone era. And mostly people think I’m only banging on about brain injury now because I have one!

To this I say, “FUCK YOU!” At least I have what I’m selling…

readathon

And number two! When I was about 8 or 9, I did the MS Readathon like many Aussie kids. I have never had MS, I’ve never been diagnosed with MS! MS is that “thing” I like to suggest is worse than ‘my’ ABI. Apart from all the other ABI’s that seem worse than mine. I know, don’t ask me to grade a crappier ‘ABI’ than what I have…

I would suggest having most my independence, lost my ability to manage my own money, pay my bills, speak for myself (ever) that would SUCK!

butterfly-ribbon

So, for a while, I’ll return to my original aim of educating people about ABI.

I’m not going to tell you an ABI can easily be avoided. Some can, come can’t.

If I told you to not drink or smoke, and you could avoid a stroke, that would be a lie.

Do I suggest never getting in a car or on a motorbike and therefore you can avoid a TBI? (Traumatic Brain Injury), apart from it’s too late, it’s very unrealistic.

You won’t get hit by a bus if your never leave the house, but you can die just as likely by not leaving the house.

prove-them-wrong

You are damned if you do and damned if you don’t.

If you want further information about ABI/TBI, this is not the right blog for you. Luckily, there is someone who does that already, does the appropriate research and you can find his blog here www.brilliantminds.com

I, on the other hand do simple stuff about ABI for the common person.

Brain Injury – bad!
Not all brain injuries are avoidable.
Every ABI/TBI is different. Not all ABI’s get funding.

puzzle

The Good, The Bad

Published December 26, 2016 by helentastic67

the-good-the-bad

The Good/The Bad

There is a children’s book I recall reading as a child. I can’t at all remember what it was called but the story line and message stuck with me. It is literally a story about a little boy who gets into an aeroplane and flies up into the sky, then the aeroplane runs out of fuel. He flies it upside down and he falls out. And he falls out of the aeroplane and he falls in the direction of a haystack. But the haystack has a pitchfork sticking up in it. But it’s OK because he misses the pitchfork, but he misses the haystack also. But it’s all okay! Because he lands in a pond.

aeroplane

The message is obviously to teach the young impressionable minded reader that life is good and bad in equal measures.

Sometimes, it feels like only bad things happen and not enough good. In recent years, I’ve developed a disability, on the upside, I’ve maintained my ability to speak for myself (when people listen) and I can manage my own finances. I might not be rich, but I’m not starving and I’ve kept a roof over my head.

Sometimes, the good isn’t completely blow you away, amazing it’s little things. But those little things all add up to.

Here are a few good things;

Winter in my house is a little brutal, however I can keep the butter on the bench and it doesn’t melt or go mouldy.
I am not reliant on a man in my life! I might be single however, I’m not bad at being single. I can survive without a male presence in my life.

ONWARDS…

good-things