Life one Handed

All posts tagged Life one Handed

Confession

Published October 15, 2018 by helentastic67

Confession

Confession

Alright, I’ve been meaning to write this for sometime and several times each year the sentiment is highlighted and I feel I can’t control myself or stamp it down any longer. I must make a confession of sorts. I love Reality TV season, which lately is all year round.

Love Reality TV

Still reading? (Cricket, cricket, cricket. OK, before you all go “OMG, OMG, OMG, Me too) Gush, Gush, Gush. Just wait, because, no not in the way that sounds.

Cricket

A few years ago, there seemed to be the quintessential Reality TV show call “Goggle Box”.

Gogglebox 1

OMG, if you are unsure; the basic premise of this show is a camera watching normal people like you and I watching TV and watching all kinds of other Reality Shows and commentating on them.

Grumpy old guy

At the time the advert was a grumpy old guy saying “I’ll never watch that” and the male voice over replied “Oh, they all say that” but they all end up watching it.

Well let me tell you, I’M WITH THAT FIRST GUY. Hell no.

Hell No

I don’t need to watch a heap of bitchy people date.

“Oh, I’m reaching forty and I have no kids” I’m not married (yet) and I don’t have children. So, I don’t define myself by what society thinks I should have made happen.

40 and single

So, I have little interest in the romance type shows.

“Oh, I’m almost twenty-five, I’m yet to get a boyfriend.”

Shut up, just shut up.

Shut up

Anyway, suffice to say, it’s my favourite type of TV because I have the time to watch what I want in my own way.

Watching TV

I binge (just TV) but I’m not happy unless I’ve a list of shows I want to get to.

Binge watching

So, as confessions go, that wasn’t that hard was it?

Hope you don’t judge me too harshly.

Don't judge

Red Tape

Published October 12, 2018 by helentastic67

Red Tape 2

Red Tape

People who don’t work or live in a world of disability don’t understand what life is like without.

Able bodied

Last week I spent some time with a brain injury group and the moment I sat down, I felt the clawing hands of desperation to get at my funding, to benefit the place I was at.

Desperate for funding

I mean, I walked in and all the members were excited because they were all waiting patiently for “stuff to happen.” Then the staff started treating me like I worked there. How many people are coming? Where is Neil?

Treat like staff

Admittedly, I live closer than Neil (who is from the Peninsula and runs a group called ‘United Brains’) There weren’t enough chairs and I was informed  there were “staff” in the meeting room next door and they were using all the chairs.

Staff

Call me crazy, but I don’t think much success can come of a business model that doesn’t prioritise chairs for welcoming visitors. That’s not even the thing that made me completely livid last week.

Welcoming visitors

But the ‘thing’ that annoyed me the most was when one woman stated the staff at the NDIA don’t come from a disability background, because they want to treat us like we are NORMAL.

NDIS

Grrrrrrr….. this is why I’ve had to explain what my AFO does, why I had medically approved shoes and why I deal with migraines all the damn time.

I’m pretty certain, I’ve NEVER BEEN NORMAL!

Never Normal

Normal does sound pretty boring.

Normal is boring

 

Today’s Lunch – 10th October 2018

Published October 10, 2018 by helentastic67

Todays Lunch

Today’s Lunch

Good Mental Health Day

People often think people with disabilities don’t have a sense of humour, they would be wrong. Made the best disability joke yesterday and only two people were there to witness it. I was at Ross House where the self-advocacy group, I go to is located. All the resident organisations are not for profit (NGO’s) The lift is old and small and slow, there are stairs. I’ve never used them. There are four floors and with my young carer who normally escorts me shopping and cooking on Fridays in the lift and a complete stranger, the lift seemed to stop every floor on the way down yet there was no one there to get on the lift. I muttered to my carer as to why the lift kept stopping without anyone joining us? “Someone probably pressed the button and they got sick of waiting and took the stairs but, I can guarantee you it’s not someone in a wheelchair!” Yeah, I went there.

Disability humour

Wednesday has started a bit differently. No water in the whole apartment complex until after 1pm so lunch will be after my only appointment and I think it’s about time I put a myth to rest, I wrote in an earlier post how I dislike the “Like”. It may have been taken out of context. I love the “Like” I have only two ways to tell if people read or like my posts. I know it sounds needy, however, hit me with a “Like and comment” I need to be validated too. Oh, yeah! I just hit 200 followers. I know, it’s not that many to some of you. I still get excited by every single one. I go check out what you have to write about and hit you up with a “Like” so you know I dropped by. If you write about something I’m interested in or feel I can support you I will follow you also.

Like

Eventually I got out on Hellonwheels to get to my only appointment, which was to get stabbed, that being acupuncture. In true Melbourne style it’s spring. So, t-shirt weather if you are lucky to be in the sun but not catching the wind. I couldn’t wait to get home to put on some warmer clothes. I stopped to collect a little cannoli and a French donut (it’s got custard in it) and stop at the post office.

French donut

No photos today.  But I can show you some cute toys I bought Mika last Friday. You have already shown more interest in her new toys by reading this. Except, well I think I don’t need to describe what obviously happened here.

Mika toys

Need more coffee, much more coffee! Medicine!

Coffee

 

Land of Funding

Published October 8, 2018 by helentastic67

Land of funding

Land of Funding

People may wonder how I’ve had my disability for 12 years, yet have not qualified for funding before the NDIS kicked in a few years ago.

NDIS is coming

Well, if I were to do it justice, I could write a book or this blog would be about nothing but ‘how the system failed me.’ But however, I don’t want to issue you all with warnings to go hide your razor blades or pills or any other dangerous self-harming implements’ (in America I guess that includes guns!)

Self Harm

So, allow me to do an abridged version. Ok, I’ll try.

If I was diagnosed early, say under twenty years of age, bingo. There would be FUNDING.

Under 20

If I was a mangled ‘thing’ in a nursing home under forty years old. BIG FUNDING.

Under 40

If I’d been in a car accident, even if I was off my face on drugs and smashed (drunk), I’d have TAC funding.

Car accident

That and all of the above means, I might not even need carers, I might be able to drive still, but I would have so much money I could get new computers, smart phones, iPads, Playstations (is that the gadget these days?) every other year and no one would stop me.

new equipment

However, I had to do it the hard way. When do I not?

After my treatment and the ‘fall-out’ that gave me my disability. Maybe because I was maintaining life independently and didn’t spend time as an inpatient in rehab, learning how to walk and talk (not complaining. Just stating facts) I started ringing around to see how this world I now had to navigate worked.

Navigate the new world 1

I rang DHS (Department of Human Services) they do Case Management, but are so overrun, they outsourced to other agencies and businesses that they then find.

DHS

I was given two names that I followed up. The first sounded reliable, but had a huge waiting list. I rode them like a kid on a bicycle. I rang so much staff turned over and eventually I was given short-term Case Management to achieve some goals.

I’m sure I mentioned how GOAL AND OUTCOME DRIVEN the land of funding is.

Goal and Outcome

Because apparently, anything less is not worth doing. Please not sarcasm.

I digress. I have dealt with two different Case Management companies (they say they are organisations but they work on a business model “to make money”) so they are companies.

Make money

The first I had an Advocate and made a complaint to the Disability Commissioners office. Case Management companies literally can sign you up, give you the ‘YES, YES, YES’ go back to the office and never speak to you again.

Yes

Both companies always said “YES, YES, YES” we will do an application for an ISP (Individual Support Package) and it never fucking happened. One company gave me the excuse that they are rarely fucked. It’s not good enough reason not to do one though is it?

I really could go on and on about this topic and Helen’s lack thereof, but it is likely almost enough now.

I guess also that the system failed me because while there were whispers of the impending upcoming NDIS, everyone thought it would solve my problems. It was painted as a light at the end of a very dark tunnel. So, everyone let me wait.

Problem solver

So, I’ve struggled, I’ve had to move house four times since my diagnosis, not always because next was outrageously high or lack of decent housemates not wanting to deal with shitty, stressful housemate drama anymore or even that I’ve used every dollar I had on renting and much from my father and lastly is the constant reminder from others, who don’t have any money issues or funding issues, trying to give me their opinions on the thing, the thing, the thing and the thing, when they really know not a God damn thing about it.

Dad money

Advocacy

Published October 5, 2018 by helentastic67

Advocacy

Advocacy

Someone gave me the most brilliant analogy for advocacy and the success felt when achieving anything major.

Advocacy success

For example, I’m currently wearing my new shoes and have been for about a month. The shoes are referred to as Custom, not custom by NDIS.

New Shoes

They weren’t made by hand to specifically fit my feet, but you get fitted in the shop and there are layers in the bottom of the shoe that come out to make room for my AFO (Ankle, Foot Orthotics) and the overall effect is, I can walk better, my AFO does what it’s designed to do, my hips won’t be uneven and the most important thing is, I won’t need a knee replacement one day, because I have a habit of hyper-extending my knee.

AFO 1

The shoes actually come from the States (as in America) and are the most expensive shoes I’ve ever owned. They are not yet PAID FOR.

Expensive shoes

I know, sounds ridiculous that I’m currently wearing $350.00 pair of shoes that weren’t paid for by the NDIA (National Disability Insurance Agency – who manage and deliver the scheme)

NDIS

So, the analogy I was given (no, I didn’t forget) was that Advocacy is like trying to climb Mount Everest. Then her advice was to stay at Base Camp. I suggested that was likely wise, since the air is thicker there.

Mt Everest

Today’s Lunch – 3rd October 2018

Published October 3, 2018 by helentastic67

Todays lunch

Today’s Lunch

Good Mental Health Day

And here we are again and after a long but broken weekend. Friday was a public holiday and Sunday I had a day out, as in I did full Person. I’ve been trying to get to the NGV to see the MoMa exhibition for months and I have the books (my art book library has been building for about 25+ years) and the fridge magnets and I finally got to see the exhibition.

Andy Warhol 1Andy WarholArtwork 1Artwork 2Artwork 3

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I confess, after all my effort to get there I spent longer posing for my photo to be taken then I did actually looking at Andy Warhol’s Marilyn Monroe and Roy Lichtenstein.

I even told my companions for the ad entire no matter what I’m not allowed to buy a print. I still am yet to hang anything g in my apartment as I need to install picture rails and I’m yet to get everything framed I bought from my overseas adventure back in 1994. Guess I’m yet to write about that bit of a Cinderella story with a very unfulfilling ending so far.

Cinderella

And today’s offering? While I almost didn’t make it today. I considered a kip & staying local I feel I’ve neglected my favourite things, places and people. So, here we are, Pancetta quiche with the side salad and standard medicine.

QuicheLatte

 

 

 

 

 

 

 

 

 

Cheers,
H

Lead or Follow

Published October 1, 2018 by helentastic67

Lead or Follow

Lead or Follow?

Someone just posted on Facebook, is it possible to ever feel like you are caught up?

Getting caught up

I chose to answer a different way.

“It depends who you are comparing yourself to? Just lead that way, you are always in front!”

Comparing

Which leads me to quote a lecturer from the Leadership Plus course I did about six years ago at RMIT.

Leadership

Sadly, he is no longer with us, having passed away from a tumour. However, I distinctly recall him telling us.

“If you can’t get people to follow you, you are just going on a nice walk!”

Wise words

Wise words from George.

When Disability Becomes Embarrassing – Part 4

Published September 28, 2018 by helentastic67

When disability becomes embarrassing 4

When Disability Becomes Embarrassing – Part 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.