When Disability Becomes Embarrassing – Part 4

Published September 28, 2018 by helentastic67

When disability becomes embarrassing 4

Fred Gets Taught a Lesson

The final day of the conference everyone was tired, but content they had gone, conquered and achieved what they had gone there to do.

End of conference

I came across Fred and in a casual setting he approached me to apologise for the previous night at the dinner and throwing me under the bus in front of everyone.

Fred apologizes

I told him “It’s OK, because I had been about to tell him to go outside and call all his friends and family and loved ones and tell them how much he loved them!” because I was going to kill him.

Im going to kill you

He seemed to sober immediately and to confirm he wouldn’t do it again. I told him it would be OK because I could always claim brain injury to “get off”.

Blame brain injury

I left him with a friendly pat on the side of his arm, but I think he also knew not to do it again. It should be a warning to others.

Dont mess with me

DO NOT MESS WITH HELEN.

Yet to kill anybody, but there’s always the first.

Always a first time

Today’s Lunch – 26th September 2018

Published September 26, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day!

Life has been way too chaotic lately. What is going on? Is it just me?

Chaotic

Last Thursday, my young carer and I went over to the west. My artist friend Larissa had organised a huge Fringe event called Disability Pride. Here is a little taste. You can see photos of the event on my Facebook page. https://www.facebook.com/helen.caligiuri

Disability Pride 1

Disability Pride 2

And if you can share the posts already on fb for this event. I’m still struggling to share to that page. I’m doing it wrong, obviously. https://www.facebook.com/larissa.macfarlane

Disability Pride

And like my sleep isn’t challenged enough? Enter this scenario. Late Monday night far, far away in the country. My mum chases in Two cats (One likes to stay out later than the other prompting me to tie them together.) I can’t believe she bothered to tell me why she couldn’t do that. Then she drove to Melbourne (3.5 hours) to arrive at 2.10am, I was in bed around 3am and my younger sister was returning from her first overseas trip. I woke at 7.30am, to wonder where they both were? I had expected to wake to an extra body snuggled down asleep in my bed. Did I need to give her intensive border control training? Doubtful. Getting luggage took for ever apparently. So overall, four hours sleep. Not good at all.

Sleep

My one appointment Tuesday was cancelled without anyone bothering to tell me so after my family departed I had a kip and I finished the day with a friend coming for dinner and a film. I had managed to convince my friend Susanne (her real name) to watch Deadpool with me.

Forgive the irony, I told her she could hit me if it was too violent. I forget, I find the violence so highly stylised and the humour for me wiped my memory of the violence. I gotta hand d it to her, the moments she closed her eyes and blocked her ears, I stroked her leg (more of a pat) and told her “butterfly kisses!” And reminding her of Ryan Reynolds rack, eighteen minutes from the end she waved the white flag, she had, had enough and I didn’t get my slap.

Deadpool

It’s now very early Wednesday morning as I tap out this blog and another crazy day is ahead.

Crazy day

So, today’s lunch, Spanakopita with a side-salad and medicine. Nom! Nom!

Spanakopita

Latte

Cheers

H

Happy Wednesday

When Disability Becomes Embarrassing – Part 3

Published September 24, 2018 by helentastic67

When Disability become Embarrassing 3

When Disability Becomes Embarrassing – Part 3

Stacey

The following day, I went looking for a particular speaker and topic at the conference, that others in my group were looking for.

It was something about “sex after ABI” for example. I find the right room and joined some fellow guys I already knew. This won’t be awkward right? Since he had given me his business card, the night before.

Sex after ABI

The guys I knew and I looked around thinking we were in the wrong place because it seemed everybody else in there were “industry-types” service providers, whatever.

Industry Types

Then in came the presenter.

That’s right, Stacey!

She started by recognising there were more industry-types there than she expected. I suspect she had wanted to empower people with ABI’s that sex could still be a natural part of life post ABI.

Sex is natural

Here’s an example:

Stacey2 (not related to Stacey) had, had a stroke. She had her stroke while having sex (a little rumpy, humpy) with her husband.

Stroke during sex

There was a moment of sadness in the room when we heard this. Apparently, the married couple had a very healthy sex life before the stroke.

Healthy Sex Life

So, when in hospital, when she was able to get up and move around, they attempted to have sex in the hospital.

Sex in the hospital

Must put this one on the bucket list.

Bucket List

We were made to understand it was perfectly normal and for them vitally important to be able to continue and maintain a normal sex life for them as part of her rehab and existence.

Sex in Rehab

You might ask how they did this?

Stacey informed us they did it standing in the bathroom with her holding onto the handrails. And success apparently.

Sex in the Bathroom

Now, Stacey 1, asked us a question. She asked us, what happens when we reach climax? (or orgasm). The room was dead silent.

What happens when you orgasm

I piped up,

“What? Your muscles tighten?”

Stacey was impressed and said I was correct. The industry-type people checked me out wondering how I knew.

How do you know

Exactly!

So, I struggled a little and said,

“It’s been a while, but……”

It's been a while

The following day, at the end I walked Stacey out because I had enjoyed spending time with someone ‘normal’ as you do surrounded by numpties all the time. She thanked me for being her “Conference Friend” Sad face…

Sad face

Stay tuned for the lesson I gave Fred.

When Disability Becomes Embarrassing – Part 1

Published September 17, 2018 by helentastic67

When Disability Becomes Embarrassing

When Disability Becomes Embarrassing – Part 1

There are many times my disability has been embarrassing or humiliating. However, this is one of those occasions where I was standing in front of a large room of people with a microphone shoved into my hand and all I could think was – “FARRRRKKKK” (you will forgive me for that shortly)

Microphone in hand

Then I was thinking, rather swiftly I might add. “What just happened? Who did that? Where did they go? Help! Now what? How do I get myself out of this situation?”

What just happened

Now, to back up a second, I will put this situation into perspective. I was in Bendigo a few years ago at the ABIAW (Again: Acquired Brain Injury Awareness) week event. I had travelled to Bendigo from Melbourne with my mum, who had driven three and half hours to get to Melbourne, so she could carpool others around also from the ABI Group in Melbourne, I was part of.

Carpooling

So, mum was there also and we shared a room in the hotel we all stayed at.

The first day was a long one, lack of sleep and we went to sessions and heard people speak, we mingled, we ate, we collectively drank bad coffee and the first night we gathered at a dinner to mingle and socialize.

Mingle and Socialize

Now, mum and I retired to our room, like many others for a break before we went to the location for the dinner. Needless to say, my mum and I are both on a different page when it comes to tiredness.

Stubborn

I like to be early to be on time. My mum is much more lenient and we are both very stubborn on this.

By the time we arrived, the people we knew there from our group in Melbourne were spread over two big tables and there were NO SPARE SEATS and no one had thought to save us any.

Crowded table

The guy upon entering, suggested we could join another table to make some friends or sit at another empty table on one side and that table would likely fill up soon enough.

Single Girls Table

I dubbed it the single ‘girls table’. Oh, hell why not?

Here’s where mum and I differ. I was completely okay sitting there out in the bitter lonely cold, but mum wanted to join another table. Soon enough a younger ‘normal’ woman joined us and I enquired if she was single or not.

Matchmaker

Sometimes, I can be such a Nona. Nona’s very prone to want to match you up with someone’s son/nephew, whoever.

She claimed to be single (turns out that was a lie), she soon decided to find secure and encourage us to abandon our single girls table and join another table with conveniently three empty seats. This table was front and centre.

Front Row Seats

I had already had a comment about the man facilitating and Master of Ceremonies. While it wasn’t bordering on sexual harassment, it might have been a bit wrong.

Master of Ceremonies

“Let’s give single girl a name, Stacey and let’s call him Fred. Again, Fred gets such a bashing, doesn’t he? So, Stacey spoke to Fred and as she returned to her seat Fred came up to me and…

Deep Breath 2

Wait… Deep breathe,

Deep Breath

He announced to the room there were single ladies at the front table and were there any men looking?

To be continued

To Be Continued

Let the Games Begin

Published June 25, 2018 by helentastic67

Let the Games Begin

I’ve been sitting and planning this post for about six months. Since I’ve been getting carers through an Agency, funding by the NDIA.

NDIS Carers

Dealing with HR (Human Resources) issues is super “NOT HOT” when getting and keeping good carers. The carers I’ve had the four years from my Council, through to HACC (Home and Community Care) which is state funded. They walk in, they ask “the normal” and they get to it and anything else they might choose to make their little project, when they leave, they might debrief me.

Choosing Carers

“I did the dishes, the stove, the benches, the kitty litter, the bins and xyz” by then, I’m nodding and shooing them out the door saying “I know, I trust you”.

They arrive, they leave, probably a little over the timeframe I am meant to have them but I know I can trust they did more than needed and they leave satisfied they will be happy with what they achieved and my cheek and personality has boosted them to get through the day. Sounds egotistical, but it’s a mutual thing.

Cheeky Personality

This is why despite having sufficient NDIS funding, I haven’t just opened the flood gate to get ‘God Knows’ how many new carers to cover 16 hours every week. I would go mental.

In six months, I’ve lost count how many carers I’ve had, but I’ve blocked three from returning for various reasons. Some have injured me, some we just had a personality clash (to be diplomatic) and some I just outright couldn’t deal with them anymore. There is one I really liked that I think cancer-wise she moved on.

So, there is a common thread that some act like I need them more than they need me because of me having a disability, is a little bit like I’m a commodity for them paying their bills.

Human Commodity

I get it that they do this job because they enjoy it and get some rewards from helping people and nobody would deny they don’t need the money, but I can tell when people work in this industry purely because they see it as a stress-free income.

I can tell when carers vie for my attention, asking coy questions to find out if I have other shifts they can utilise or if a carer must love coming to me because I’m friendly or chatty or (wait for it) YOUNG.

Love the work

I had one lady, I swear she arrived and she was old. I’m not ageist, however her face was very wrinkly and she looked ‘older than God’. She turned out to be younger than Aunty Christine, she has actually aged well. But this other lady, she was jumping up and down telling me all about how young and active she was because she wanted me to want more of her.

Older than God

I can also tell when carers prefer to spend time with clients who are intellectually handicapped, because they think they can do what they want, say what they want and they don’t get held accountable.

Intellectual Disability

It’s also challenging to keep or put boundaries in place because I am so friendly and independent. Who knew either of those things could ever be bad traits?

Bad Traits

So, carers sometimes come and go very quickly. You can have too much of a good carer and you burn out or get over a good thing and not enough of the awesomeness.

In recent years, if I rang my council and managed to get the ‘right’ person who knew my reasons and standards, I would be able to add someone to my ‘blocked list’ without questions.

Carer block list

Now, they require an Incident report and the first one was an embarrassing incident where I suffered a scraping type of injury about an inch above my “Chocolate Starfish”.

I don’t know why, since I generally dry there myself. But when I asked the trusted Aunty Christine, she swore black and blue (oh, how I love her) and that was that. No more ‘older than God’ carers.

Black and blue

The others, it seems to be, they come to work but would clearly prefer to be somewhere else. On their phones, arranging social activities with friends, doing parenting or maybe just filling in time. Since they don’t actually want to find ‘something’ to do. Having carers is a blessing and a hindrance and while I’m all about flexibility, there are limits.

I can’t arrange my needs around their lives, if it’s dark at 5.10pm – (Autumn currently) the washing comes in by then. So, no can’t have you come early at 2.45pm because it’s too early and the shift is at 5.30pm.

So, the games go both ways and I’m usually the one who puts up with more or goes without, which starts to feel like a human rights issue.

Human Rights

Selfish

Published June 1, 2018 by helentastic67

Selfish

I have dilly dallied about writing this post for some time because of the obvious slanderous nature (note title) of the message I want to shine the light on.

Shine a light

There are people who have a disability and they travel, they work, they shop, they enjoy life as a consumer of all good things. Yet, they will bitch, whinge and moan (maybe that should be the title) about how hard they have worked to appear ‘Normal’.

Normal

I know in many ways I appear normal and when I am forced to explain I actually have a brain injury, they are surprised.

I am normal

HellonWheels

Published May 21, 2018 by helentastic67

Hellonwheels

How she came to be? As you may already be aware Hellonwheels was a nickname a friend of my sisters gave me, way back when, even years before I got my license to drive and that wasn’t until my thirties.

Drivers licence

SHUDDUP. I will not take any criticism about how slow I was to learn to drive and get my license. I was a thing and then the other thing and then you will hear about getting it just in time later.

But, today I thought I’d give you the rules and regs of having a mobility scooter.

Rules for Mob Scooter

My process was when I was referred to the council, The City of Yarra a year or two after I developed my disability, it all started to happen.

I was referred to many people to act upon all the things I needed and wasn’t aware of. I thought I’d just start getting carers to help me dry and dress, make my bed and clean my home. An OT (Occupational Therapist) would come out to access how I manage, how I get around, transport etc and she had the brilliant idea to organise a mobility scooter.

Mobility Scooter

Some people just think you go to a shop and buy one and your good to go.

That’s not it at all…

The OT negotiated with my GP, had a copy of all my medical conditions etc. It was deemed I would be safe on a scooter and that the general public would also be safe on the streets and then the man with the van came out from Scooters’ Australia with three scooters.

Test Drive

The first one he told me all about it and I got on and they walked beside me as we did a block on the footpath, we went over some cobbled stones in the guttering, (difficulty rating: some) and along Hoddle Street past my favourite shop there. (It’s called Schotts) Past a laneway, which I did not stop for.

First test drive

Not stop for prompting him to tell me “I just got killed!” Prompting me to tell him cars never come out of there. My left foot drifts out of the footboard, all because of my Drop-foot and if I’m not putting weight on it, it just does what it likes. Back home, the man disappeared into the van and backed out on a second scooter, slightly bigger.

Second test

I got on that one and repeated the ride, being careful not to get myself killed in the same places I’d neglected my basic knowledge of road rules as the first time.

All went well, I can’t recall much about that scooter, it might have been too bouncy or rather big? Big can be a problem when it comes to storing a scooter.

But alas I almost forgot, the man disappeared into the van a third time and came out the biggest scooter. Good to have options and all but I confess I looked at the OT and told her ‘this one must be the big fat Elvis!’

Third test

I think I had a little ‘Go’ on the big fat Elvis, but didn’t bother going around the block like I did with the first one.

Now which to choose?

Choosing scooter

Choosing scooter 1 Choosing scooter 2

Let’s just tell you all the reasons why I chose the first one. It was the smallest, easier to store, the seat comes off, the front handle (part thing) folds down and the scooter (I’m told) fits into my car boot. Except and he rattled off several cars makes and models, so let’s just say most. Probably not a Porsche or Mini Minor or even…. I don’t know.

Mini Minor

My mum has a little Mazda and I don’t even know if it fits in her car boot as we’ve never tried. Point being, if you go to a shopping complex or a day away holiday, you can take Hellonwheels with you. The tyres are solid, so no worrying about flat tyres and I have a satchel on the back.

Mazda

My scooter was the cheapest at $4,000.00. Of which I obviously did not have and she was not at all fazed by this.

The OT got her letter writing hat on and started pounding the pavement to get me funding.

Now, you probably wonder where Hellonwheels lives? When I first got her, I lived in a single storey terrace house opposite Public Housing. I had a small backyard and no cover out the back. Again, no money, again more potential funding.

Shed for scooter

The gate at the front that gave us access was replaced and a power supply was required. The landlord also sorted the power supply in my backyard for the scooter.

Funding was sourced for a shed to go in my backyard. It ended up with the scooter and my gardening supplies. It took up half my backyard and because the clothes line was so loose it was able to stay up and I still had half to use for my washing.

Shed

The shed has been mine to keep, the next house I lived in, the scooter lived under a BBQ cover as there was not enough room for the shed to go up.

Hellonwheels now resides in my scooter shed under the building I moved to 6 months ago, with my gardening things. There is power to the scooter as it needs to be constantly on live power. Not a battery. Every outing on my scooter is a potential adventure. Also, a possibility of a way to engage the community in discussion about disability and hopefully not a chance to need to make a claim on my Insurance. I have up to $10,000 if I injure someone but I’m really not planning to need it. Fingers crossed.

Underground garage

Fat Furniture

Published May 18, 2018 by helentastic67

Fat Furniture

Who loves a good classic piece of furniture? But hates how disability makes us fat. Well, strap in you will love this post.

The early days of my disability I started to get just a tiny little jelly belly, yes, it’s how it starts.

I used to create a diamond shape around my belly button and push together so it resembled the buttons on a Chesterfield couch.

Then I got my disability and I could only do it one handed, not nearly as effective, clearly.

My belly has gotten bigger. Yeah, it’s the only word for it. Bigger, still jelly, but bigger. But there are rare moments I actually appreciate having a belly. I know right?

Last week I departed home on my Hellonwheels and halfway down the street, running late for my local appointment I heard the clown horn on my phone in the satchel bag, on the back of my scooter. Running late, couldn’t stop to check it, have to prioritize and get to where I’m going, then check it.

Around the corner on the High Street, to the pedestrian crossing, press the button for the lights to change and grab phone. The lovely Noelle, start to respond, we have an understanding we text when we can, but when we’re busy we let the other person know we are unavailable.

So, I tucked the phone on the top of my thigh under my belly. Not the safest option for an iPhone, I didn’t pay off on contract. The first and only phone I’ll probably ever get funded, but I don’t have any tummy muscles, so think I’m safe.

So, there you go, a bonus from having a disability.

One Word

Published May 7, 2018 by helentastic67

One Word 2

One Word

You know those things in life, I’ve managed to excel at and what I consider winning at life skills and yesterday I shared a piece of my Helen’s wisdom with my Case Manager over our lunch meeting and he managed to trump me with just one word.

One Word 1

It’s with his permission I share this story with you.

When I moved to my home four years ago, I had plenty (too many) of door-knockers, you know the ones, bible bashers, God bothers and since watching a show a few years back called “The Heart of Dixie” I’ve based how I deal with these situations, based on this particularly great, but grumpy character. In short, the character is the Mayor, he’s a retired sportsman of African American background and he’s seen as a tall black drink of water, so it’s very funny when he greets everyone with a strong and grumpy ‘No’ and he just repeats it. Until whoever is asking something of him, goes away.

Hart of Dixie

So, on a Saturday I’ll open the door in my PJ’s and encounter a sweet young Asian girl or two well dressed, clean faced boys (sorry men) and before they get a word out I start with the “NO!”

Answer door in pj

If the brochure in the hand comes out or they open their mouths, I just repeat “NO, NO, NO, NO!” you get the idea. A good head shake never goes away. Then I step it up by closing the door. Sometimes I’m peeking around the door with “NO, NO, NO” and the head shakes to see if they are still there. Why are they still there? Then I slam the door.

No no no

I must say, I thought I was nailing it, I really did until I met with my Case Manager yesterday and somehow this topic came up, he told me what he does in a word, trumped me. He opens the door, says one word and then slams it!

Ready?

Wondering what the word is?

“GAY!”

Gay

OMG! They win again, I could lie, I guess, but I just thought it was way too good.

Today I re-countered this story to my carer while she thought about it, I suggested I didn’t know if all religions had the same opinion about Gay and Lesbians and told her I didn’t care enough to research it.

Religion

But, I think sometimes life with a disability can be pretty depressing and sometimes it’s these amusing moments that we should share to make it all worthwhile.

Feel free to use either of these methods to dissuade annoying people from pestering you at home.

You’re Welcome.

You're Welcome

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