So today I thought I’d give you some context for HellOnWheels, and why I blog.
After being part of a self-advocacy group for over 8 years, it would seem as different faces come and go, I still needed to explain to people who I am and what I’m on about.
And basically, why I deserve to have opinions so it would seem.
I asked and offered a blog post to contribute to a newsletter that has been rebooted by a lovely volunteer. So, I was surprised to find my blog contribution still not being included.
I had to ask numerous times. I do have a tendency to follow up and not let things go until I get answers. I think with kids it would be considered ‘pester power!’, but I am not a child nor do I want any.
I was told after someone read one of my posts that “Oh she’s got strong opinions.”
And that was why.
So, this is my explaining why I deserve to have the opinions I have.
I really want to thank you for calling me today to tell me all the things I should be doing. You haven’t responded to any of my friendly messages for months now.
I had some good news to share, but you didn’t ask, nor could I get a word in edgewise. I’ve just had a 4-day weekend on the 4th lockdown in Melbourne, some appointments cancelled I’d been trying to get done since they didn’t happen in 2020.
Fuck you COVID! No, I really mean it this time!
It is imagined that people with disabilities have not been financially impacted, since we don’t work. We haven’t lost work and why should we matter.
Well, I shall tell you how. Allow me.
These days I do take more ‘healthy pills’ than medications so I can live to the at least 65. I can afford to live till then.
herbal pills in wooden spoon with ginger root, Kaffir lime fruit and flower on dark brown wood background with copy space. Above view.
Shut up! I will explain that expiry date another day.
COVID has meant everyone and their cat and dog has been out buying ‘healthy pills’ to avoid getting or dying from COVID. It’s a fair call. I can’t blame you all. However, many of my healthy pills I buy in bulk so I can get bulk discounts and pay less over time and because my suppliers have had limited stock, they have not allowed me to do this. I’m not talking about truckloads, just 2 x 200 tablets of magnesium. Just an example.
But I don’t need someone who is not on the ‘coal face’ of living on the edge financially and choosing what I’m meant to do without to ‘help’ me decide I can give up my weekly chiropractor visits.
You all realize I have lost many of my pain management appointments due to lockdown, right. And you want me to deal with a rib out as well. The rib still hurts despite being put back in last Friday. It’s Thursday night as I write this.
So, it’s really shitty when people who are meant to love me are awfully opinionated about what I can do when they are not me.
You know that moment when if there was a statistic that said if there was one person in every family of four to have a disability. The only person in your family who could deal with said disability well, it’s you. Yeah, I knew this some years ago.
Now I needed to ask for a loan, quite happy to pay it back. But without even knowing what it was for, you decide to give me a lecture about managing dollars better. Stop helping!
You are upset, because I didn’t ask how you are. It was hard to get a word in edgewise, and I was already having your opinions and the opinions of other people who are not me to get a word in edgewise.
So, now my days is not done, I don’t have the energy to ‘deal’ with anything else today.
I’m feeling really shitty. My head hurts, my left eye is pounding (the indication of my migraine these days). So, I’m going to bed for a cry and a kip.
Now I need to feel like eating sometimes so I can sleep tonight and get up and do all the things again tomorrow.
Meanwhile, the rent gets paid. The lights go on. I’m not starving and I can put one foot in front of another knowing I don’t ask for help often but when I do, I really need it.
Then, maybe I’ll be able to smile a little. Or I can try and if that’s how you are going to be, please don’t call.
As you might all be aware of, I’m always busy. Did 2020 put a dint in anything? No.
One of the reasons you could get out in Melbourne during what was known as the toughest lockdown anywhere, to stop the spread of Covid, was medical appointments.
I was out at one yesterday, when I came up with this witty joke.
You remember the days when the military used ear piercing metal music 24/7 to keep their prisoners sleep deprived? Send water boarding? (I know this is wrong, but hang in there?) So, the new torture device is……….. “Tell us the codes to end the world!”
Sometimes I see the perfect example in name about how men and women differ. This is not to say one is better than the other or worse, however rarely the perfect example presents itself for me to share, so I shall.
I was on a tram heading into the city, in the early evening. It was still Spring, but towards the end of the season. In Melbourne, that translates as flowers, wind, winter, rain, hot, Spring, Spring, Spring, rain. Forty degrees in the shade. That about nails it.
Several of my carers have hay fever for months. A young guy was sniffling a lot on the tram and it was rather unpleasant, not that I gave any indication of disgust.
He got up to check the tram route map and when he sat again, he apologised for sniffling and explained it was hay fever. He had gotten up that morning and had run out of tablets.
Context done.
A woman a week earlier would have noticed, then to fit a visit in somewhere when she was close to a chemist during the week. By day five, let’s imagine Friday, she would have started to consider there had to be a chemist somewhere and she would have gone out of her way to be prepared. Guys – he just plain ran out.
I had not been concerned he was contagious, but I reached out a hand offering him 3 slightly crumpled tissues. I could tell he wanted to take them, but he looked concerned they were not clean. I reassured him I had only just put them in my bag.
I’m writing at my favourite café and a woman sneezed. I gave her the appropriate ‘bless you’ in a non-religious way.
She disappeared to get a napkin (ouch) and upon returning, mentioned it was her Hay fever. Then she stated:
“It’s so debilitating”
Mmmmm…. Ok, it’s shitty, I agree, but debilitating is a strong word. Hay fever can suck. It really can. In Melbourne there is a season where it can kill, but this woman’s hay fever to me feels like a first world problem.
There are times I sit on the writing a post until I can do it justice. This is about both my absolute horror at disability service and about why I appreciate and need to be treated like a normal person. Or at least like I might be a working, contributing human being in society.
For want of a better name, I’m calling this person “Somebody”. Somebody was a Case Manager I once had. Somebody wasn’t a great Case Manager, but she/he was a reasonable person and I think she/he knew they could share with me their shitty work day, because I would emphasis with both them and the client.
Somebody had an appointment with another client the prior day. I imagine it was a lot to deal with as they were still processing. She/he had gone to see their client who lived in a group home.
They walked in expecting just their client and instead was greeted by the CEO of the company, the site manager and about four other people that prompted me to say ‘Got it’. Top heavy management, sure. Oh dear, this did not sound great, then Somebody paused, seriously debated if she/he should tell me. She/he shouldn’t have, but she/he did and I gave them the grown-up empathy and opportunity she/he needed and wouldn’t dare name or shame them or who they work for. That said, some stories have to be shared.
Somebody walked into this meeting unaware of why they were there. The day before Somebody’s client took a bite (I repeat, a BITE) out of a carer’s thigh. Ouch, sweet Jesus Nelly. I expressed my terror. Then my barrage of questions/statements.
“What was the carer doing? Presumable the client didn’t like it? Was the carer not reading the client correctly? Was the client not being listened to or heard? The carer must need more training? What was the carers thigh doing anywhere near the clients mouth? The staff need more training or better staff?”
Somebody looked at me surprised. I’m sure Somebody wished I had been there to quick fire my questions. I hope your advice, the result would only have been to move that staff member to ‘easier’ clients and to dumb them down with stronger meds. I refer to that as ‘bombing’ them out. Which is also why I don’t reach for pills anytime something hurts or I’m given a script.
Lastly, this shit is why I blog! If you got this far, please hit Like and share.
Family is a beautiful and evil thing when you have a disability and life in general, I often feel like my contribution is undervalued or thing’s I could do to contribute to get together’s, it’s assumed I would break things rather than help.
At most Christmas gatherings, I offer to help because I want to be apart of things and not feel like a freeloader, but it becomes easier to stay out of the way and come in later to pack and unpack the dishwasher. I may offer to hand wash (carefully) some things that don’t go into the dishwasher and I’m told very quickly “NO” like I might smash the Fine Bone China cups and saucers.
No, I will not, I hope to inherit a share of those one day. Three daughters, is cups, saucers and cake plates. So, no would definitely not smash them.
Fun Fact: You can put Wedgewood in your dishwasher just without the detergent and likely on a cooler wash.
So, my cool teacher. We all have a cool teacher, right. My favourite teacher was the Art teacher. Of course, he was.
As an Art teacher, he would listen to you, discuss techniques and he would allow you to do things the hard way so you would learn and then he would suggest a far easier way for next time.
If students thought to do art in their final year, to get an easy class, he didn’t pander to their demanding insistence to be helped. He was very firm, he couldn’t or wouldn’t help those that didn’t help themselves. When I had insisted to be moved to his homeroom for Year 12 as I had been put into another homeroom. My form teacher (Let’s just call him Art to make life easy) Art had, had some elective surgery over the Christmas break (don’t know, not relevant) and something had gone wrong. I think they had accidently given him nine times the correct dose of ‘something’ and he had ended up being taken to Melbourne in an ambulance, in Intensive Care. He survived. Thank God.
When he returned to his first homeroom, back rather nonchalantly he stood at the front of the homeroom behind his desk, facing the class and announced he had been absent for the year, until then with a “Sorry about that”, which was perfect. It was really blaze. Although I imagine now knowing what I do about the brain and surgical fuck ups, that it had been a road to recovery.
Lastly, he was so cool, I once overheard a conversation between two older guys (Year 12) talking about driving or flying somewhere at high speed. Art ducked his head into the conversation, stating “Try being in an ambulance on the freeway, 200 miles an hour.” With the sirens blaring.
I saw a British comedian on a TV show walk on stage and announce he was a bender. WTF?
He was referring to being gay. My gaydar is not always working but it was pretty obvious with him.
I AM STRAIGHT, or homosexually challenged as I like to say. But if I use the word bender, I suggest I’ve survived with my disability by bending the rules.
I think within reason, all my life I’ve done it. Case in point, When I was going from Year 11 to Year 12 in High School, I wanted to have more free periods (space in my timetable so I could study more or whatever). My timetable had 6 classes in a day from 9am-4pm. Mostly, kids had 2 free periods a week and I was already planning to be a poor art student at college.
So, when I sat down with my co-ordinator to discuss my choices in classes/subjects for the following year. I wasn’t doing sciences or literature-type subject or legal or accounting. I mean, C’mon! Snore/ZZZZ, I sat with said year level co-ordinator and told him I didn’t much care I was one subject short. I wanted free periods. He told me I couldn’t.
Can you imagine telling 18-year-old Helen she couldn’t have what she wanted? Oh no, he didn’t! I knew a year 12 student who had done exactly that so I said “But Fran O’Neil did!!’ Fran can be found here Fran O’Neill He did not look pleased and that is how I had 9 free periods a week.
I was at school first in the morning. I spent my lunches and all my free periods in the art or graphics room. I bagged the black tape deck at the library so often when the library card was finished, I asked to keep it as a memento. I booked that tape deck out so much my name was consistently on it.
Year 11 and 12 was also the days of my favourite teacher ever. I actually was given a different homeroom teacher in year 12 and I dared to be moved by my art teacher’s homeroom since I was doing more art subjects than anything else.
My teacher had already missed the first half of the year anyway but that wasn’t the point. I was insistent he would return. (He had had a medical situation and had been absent without any idea when he would return.) His first homeroom back, he stood at the front and apologized for being absent. Then got on with it.
My first parent/teacher night that year my mum and I would sit with said teacher and I was informed that at the first meeting in the teachers’ lounge the co-ordinator announced ‘Fuck that, Helen Caligiuri! You all need to watch out for her!” Isn’t that lovely?
This is why the homeroom teacher was so cool. I will tell you how cool he was in just a moment.
But, first, that is an example of how I bend the rules. Bend not break and if you happen to stop them because you bent them a little too far. Ask permission first so you can say such and such said I could,
So here we are again, so are the days of our lives!
I’m off for my 4-6 weekly pilgrimage to my GP. He is often/usually/generally/ always my first point of call for getting stuff I need (handy hint!).
Today I’m going to be asking him to help me advocate for me to get more Botox in my leg. I know it all sounds great to put it in your face, however I think it’s a waste of money for 30-somethings to spend, in order to age slowly.
Young people! If this is you? We all age the same, we all go in the ground eventually and Botox is the most toxic thing you can put in your body. I’m just saying, don’t do it for vanity. It’s better for people who need it for medical reasons armpits, legs, arms, etc.
Now, you may imagine Helen seems to have it together when she needs stuff and she has a voice and words, so why do I need my GP for this?
Well firstly, when people want you for a trial that can give them research money and good results (Pick Helen!!). When the research is done, why didn’t you give what you promised? The hinged AFO the appropriate shoes and the overall result being not to need a knee replacement one day.
That is the bottom line for me needing Botox in my left leg. They tell me I don’t need Botox, they even tell me since I now have the correct AFO and shoes.
Yeah! Thank you NDIS (not)!
And I don’t let them forget it! They double down and tell me I don’t get sock fluff build up inside my AFO, so I mustn’t need Botox. Then they even mention I haven’t had it since 2017. Therefore, I really mustn’t need it.
Hell onWheels/Life One Handed 