Had such miserable posts of late, but here’s a little something amusing that comes from family spending time together even for the shittiest reasons.
Five ladies taking up residents in my father’s home. We all do our coffee a different way. My sister’s partner on the percolator to make sure everyone had their “Medicine” (as I call it) when they needed it. One morning, well around 10am, I walked past my older sister throwing her a simple question that required little thought to answer. She stood holding her coffee cup asking if I had dared to ask her a question before her morning coffee. My younger sister looked empathetic towards her plight, even though she only has one coffee every day. I told her fair enough and she could get back to me after her coffee.
I later explained to the marker of coffee, “I like to start the day with my natural enthusiasm for life! But I need to have medicine towards the end of the afternoon to get through the rest of the day!”
I think it’s a bit ironic considering I spend every morning looking stoned and I’ve never even smoked a cigarette. Definitely not getting into the Mary Jane.
The bringer of coffee and I got a coffee the day after my father’s funeral at a fantastic cafe/coffee roaster in my hometown and while there we bought a supply of roasted beans. The worker in the café were really good at the customer service, that such roles require, offering us all the different kinds of beans available. I really wanted to suggest, “give us the one for, I’ve had too much Sake last night Asking for a friend.” It wasn’t me driving the porcelain bus at 7am the day after, but enough said.
Hope you get the Up’s and Downs in life right now and can hang in there for me to return to normal programming. Must I remind followers. Please hit Like.
Noelle will be impressed she can post on the Monday, so things are getting back on track, I aim to please.
As you might have read recently, I was given some awards from my sisters after my father’s funeral. Those being for the “Best/Worst timed noisy nose blow” and the “Best/Worst ugly cry!” By mentioning this again I’m to suggesting I’m bragging or particularly proud of these awards, given humorously on an awful day, however to highlight the giving of an award I’m going to share now.
In the early days of my blogging, another blogger commented calling me the “Meme Queen!” Anyone that doesn’t know, Herllonwheels/Lifeonehanded is a two-woman Team.
If you share a recent follower, you might not be aware I write the words, and the actual memes and the technical part of putting my words out there is generously done by my friend Noelle in Sydney. So, when given the rather royal title above I responded kindly and passed on the credit where credit was due.
With the recent passing of my father, it’s been hard to bring my usual humour to HellOnWheels however, every post that goes live I check the Memes Noelle has chosen and I’ve been cheering at the choices the actual “Meme Queen” has found and hope you realise how great a job Noelle has done.
Wow, anyone noticed lately I’ve been a little less than consistent? Yeah, I really don’t like being inconsistent. I’m actually always found ways to have routine, even when I did not have study or a full-time job, I built things and life into a routine. Maybe building this and consistency made it easy to keep my AVM be unnoticed for so long. Maybe it’s how I coped. Or the signs of it, I don’t know, it’s a working theory.
So, if you have been following, you know there has been chaos, emotional trauma and grief and my normal routine has been thrown out of whack.
Two brief visits to the country have meant returning home I’ve needed a week just to catch back up on the normal. People assume having carers is set and forget but it requires ongoing maintenance. Having events out of the norm means shuffling, more intensive organising stuff, Admin, housekeeping. It all starts to back up on me. Mail, letters that require action grows, phone calls, emails, new groups plus Zooming.
In times of stress, I’ve always needed more sleep and every now and again I get a migraine where I just can’t function and I’m in bed by 3.30pm and I’m hungover for days despite deadlines and events.
On Thursday last week I went to the AGM of the NGO I’ve volunteered with for over ten years. I’ve been a voting member for 4-6 of those. You member the group that was under valuing me and bullying me. Yeah, that one! I stepped down. Even by choice, with all the other grief and stuff in life to deal with, it was a tear in the corner of my eye moment. I was asked to stand so a room full of mostly strangers could see who I was and asked if I wanted to say something. I did but wasn’t in any state to speak. Nor, would they have wanted to hear what I would have said.
Add to this my carer wore perfume that day. She made the statement “it was her thing!” I’m like, “Get another thing!” And then the migraine to boot.
On the Sunday, I did a BBQ gathering in a local park to celebrate my recent 5-Oh! And upon arrival found the BBQs did not work.
Having some WTF Moments of late, and not coping. Things continue to slip. It’s now practically Wednesday and Tuesday came with two carers arriving because I forgot to cancel one and it allowed me to do some outsourcing and some catching up. My small stack of hospital referrals and letters for appointments has gone. And while this is not the post I’d intended; I will start on the next. A BIG AWARD TO BE REVEALED! Some updates on all the important things and finding new ways to write since I’ve got bigger issues with my one good hand.
So, this is the last post with the subliminal message, has anyone picked it yet or even noticed? Please comment.
So, last week was the dreaded week of my father’s funeral, worst day ever. First piece of advice, someone offers you tissues. TAKE THEM!!!
Even though I had a friend, who saw my support person handing me a tissue every other minute, it wasn’t enough.
All the talks-talks, song, light candle stuff for which you think takes forever, it’s over before you know it and I was almost left behind. I did the walk out metres behind his coffin and tried badly to not rush, while desperate not to do the ugly cry. You know the cry where you at least want to bury your face in a hand, so no one witnesses it. You know I use a walking stick in my one good hand right? Yeah, not helpful.
The Funeral Home director asked if I could walk over to the cemetery or if I would need to go over in a car. Wisely, I said yes, car please. He had not been offering me a lift but if I had not been helped into the front passenger seat of the hearse, I would have been left behind. Lovely driver Phil made small talk to take my mind off things. I tried to sell him Dad’s car. But alas, dad no longer has the Valiant Charger in Vitamin C orange. So, that was a fail.
With all the love and respect in the world, if I ever hear the song by Bette Midler, The Rose it will be TOO FUCKING SOON! Jesus Wept!
Second piece of advice, when trying not to do ugly cry, try breathing in and out of your mouth. Not saying it worked, but it felt like it helped. Lastly, my family gave me the awards Best Worst Ugly Cry and Best Worst Timed Ugly Nose Blow. Charming, no.
The night of the funeral we had a pool party with our cousins around catching up and playing pool. I have cousins I’ve not seen for 30 years. And the most common memory was dad teaching everyone how to hammer in nails into a small off cut of pine. One cousin who has become a builder wants dads hammer, but I have already laid claim to it. What! I think we made dad proud that night.
His house felt like a home because it previously felt like someone had been merely existing there. We will be there for this upcoming Christmas, so I imagine dad watching over us as he promised. I might convince a carer one day to hold a nail for me while with half the necessary eyesight I smack in the nail in the triple tap technique my dad used. I’ll explain that better another time.
On Sunday, two days later I received the award of 1st Caligiuri Daughter to surface and be reasonably functionable. The household likes to start the day with coffee. I made the statement I prefer to start the day with my own natural energy and you should all be aware I’m NOT A MORNING PERSON. I need to end the day with my Medicine (coffee) so I can get through the rest of the day.
I guess all the family dysfunction we put off dealing with for one day in the future comes to the foreground when the passing of a loved one happens. Now we have to deal with all of that too. While grieving.
A friend shared a perfect statement with me today “The Price of Love is Grief”
I know this is not a happy post, but I’ll try better next week when I reveal the reason for the subliminal messages.
So, writing with an upbeat tone is not going to be easy today. Went clothes shopping last Friday for something Funeral Appropriate and disability friendly. My dad’s funeral is this Friday. I’m revisiting my question to self of “How much snot is in one’s body at any given time?” I did ask Google who was NO HELP!
I’ve ended my day of shopping with a men’s jacket to wear over my standard black pants and the goal to not look like Hannah Gadsby. No offence.
My father had a very quick illness that did not allow me sufficient time to prioritise to drop everything and go see him. He had started treatment but was truly not going to win this war. He had previously beaten bowel cancer and bladder cancer, a heart attack during all the lockdowns in Melbourne.
Despite knowing he is at peace; my heart and soul are weeping. The world seems a little like something is missing if you know what I mean? And I’ve yet to write my contribution to his funeral. I’m not going to be able to read it myself.
Now for your subliminal message.
Cannot promise to be any more upbeat next Monday, can’t be helped.
Because HellOnWheels like myself takes prides on being a multi-faceted blogger, with plenty of different interests’ wisdom and knowledge in life, here’s a little advice from the carpenter’s daughter in me.
“Measure TWICE! CUT ONCE!”
You’re welcome.
Going for a bit of light humour because it makes things a little better on even our darkest of days. Except for this part.
For my dad Frank, may he Rest in Peace born 15th July 1948 – 5th October 2022.
My head understands but my heart and soul are breaking.
Have been trying to keep my head above water lately. Have been super emotional and brittle, the last week with crazy lady hormones and other things I can’t mention. I’ve apparently hit the Pause! (A common term for Menopause)
Many people would read this and argue that HellOnWheels is not about brain injury. I say, “Shut the Fuck Up Who asked you” (Note, not a question!). While I’ve had my AVM all my life and didn’t know until I was 34, the treatment I had was radiation that hit the AVM from all different directions. Who is to say the part of my brain that manages all my crazy lady hormones wasn’t hit also.
Note my very non-Doctor terms. I’m not trying to become a doctor, so I have actively tried not to learn correct medical terms for “brain”. So, I don’t know if my years on Dexamethasone (for brain swelling) messed with my hormones rather than stopping my cycle for years or just messed with them. Is there even a test for that?
I actually have a Crazy Lady Hormone Doctor. I usually put the word “Bitch” in there but have to be careful where I put it because my doctor is not the bitch the hormones are. She’s awesome! By the way.
Years ago, I started asking my GP questions to sort out my hormones. The CLBH (Crazy Lady Bitch Hormones) and after I went to this clinic and then that female GP, my GP asked how much money I was going to spend sorting this problem out? The women out there reading this will appreciate it, when I was of the mindset I wasn’t trying to have a baby before the “window closed!” But I did want to not feel like crap two weeks out of every four fucking weeks. With little to show for it some months when Aunt Irma came visiting, but I also wanted to only be hot in summer, or if I went for a drive in a car on a hot day (I’m referring to the HOT FLUSHES people!)
Seriously, ladies! You hear me on this? So, I’ve been dealing with that and all the other fucking things and not holding it all together very well. Also, I barely consider discussing these things with my GP of 15+ years anymore on account of him being a HIM.
So, this is a part of where I’m at right now. Here’s your subliminal message in this week’s post.
Last week at a meeting I contributed my Hot Tip for how I managed to get through the Plague in the last few years. Now it received rave reviews, but I feel like it will be passed on to the intended third party without my name attached. Call me crazy but I like to be given credit where credit is due.
So, well they failed to remember Hell’s got a BLOG! So, I’ll just beat them to it.
My advice –
I thought of friends that might have been more isolated than I was or coping with all the lockdown stuff in Melbourne and all the social isolations, and I rang them, I reached out. I just talked about whatever, and I know the people I chose to do this with appreciated me doing so.
Ironically, because everyone always assumes Hell’s doing OK, no one ever thinks to check on me.
And like sands through the hourglass, another week gone by, you might recall I mentioned a subliminal message would appear in my posts. Yeah, you didn’t miss anything because I failed to mention to my lovely administrator and she edited them out. Seriously, the patience of a Saint has Noelle. Will not forget again
You might also have noticed I mentioned despite all the broken medical system everywhere, I have had two surgeries this year, I mentioned the recent surgery, this is me circling back to the previous surgery.
Late January, I had carpel tunnel surgery, for those of you that might be new to HellOnWheels, I’ve been one-handed since 2007, after the fall-out from the radiation treatment to my AVM (Arterial Venus Malformation) and after a disc-bulge surgery in 2011, with the loss in half my eyesight making my left-sided Hemiplegic all but complete, I had managed to get to fifteen years before living independently one-handed, caused my next surgery to be far more pressing. Part of being naturally right-handed meant I just got on with getting on with life. It may have taken longer, having teased my brain causing migraines. Getting my brain around peeling a carrot one-handed, but you work it out. Try doing that one-handed. That can be this week’s challenge. After years of having osteo, often weekly, the pain in my right palm overnight that would wake me and I would need to get up and shake out my whole arm to release the pressure, so my hand would stop hurting and feeling would return. It was time, before I had nerve damage, a recommendation from my Mum and a call made, I had my referral.
After suggesting I would beg, borrow or steal the dollars required for my surgery, an appointment was booked for not long after. I managed to borrow the money from the Dad Bank. Later paying him $50. Every month and texting him each month when I’d transferred to him.
The actual surgery was only possible because I had it done privately. In his rooms in South Melbourne. His wife providing the reception duties. I had hoped to go through the public system even going back to the country town I’m from and my surgeon was also from. But, time was rather important, not wanting to risking any nerve damage. The surgery was performed with two local anaesthetics, while I was awake. I confess, I had my eyes closed. He was working on my right hand after all and my peripheral vision on my right is definitely my sharpest and I could see him over my hand. The tool was like a knitting needle where a blade came out from inside to cut the tendon in the top of my hand, that he had diagnosed from performing an ultrasound before the surgery. The worsts parts was actually the injections. I always forgot how much they sting. I was wondering if I would swear, but alas I made us all proud; I did not. The surgery was completed in thirty minutes. I will cover this in a bit more detail in a future post, the unexpected and the embarrassing and numerous, but today I’m trying to keep it short and sweet. But while the carpel tunnel issues have been solved, I am noticing little twingy pains and niggles telling me it’s not the end of my right hand issues, this will not stop any time soon.
On Saturday night I posted to my Social’s this, “Its Saturday night and I’m Out – Like Out-OUT! It blew up well, it was well-liked immediately.
These days, Saturday night is my Single Girl Date Nite when I go off-grid and watch films or try to.
This Saturday I was OUT; I went to see a band I’d like since my days of working in clubs back in the 90’s. I’d not ever seen this band live. The gig had been rescheduled three times due to the Plague. Damn Plague and finally it was here. I should point out back in my club days, I was lucky to be home two nights a week, now I’m lucky to go out two nights a year. God, I feel old.
Preparation to get out in the dark (I can’t see in the dark, if you recall) starts earlier than normal and the ritual of getting ready to go out is harder due to that only doing the ritual twice a year. The Ritual being the excitement of getting ready, choosing an outfit. The make-up, etc, etc. and the pre-event tunes.
Anyway, once near the venue my friend dropped me at a corner to wait while she parked down a side-street, so I didn’t need to navigate dark streets and uneven terrain. While waiting some twenty-somethings walked past stating “what’s with all the old people out tonight?” Grrr, can’t be talking about me.
Sorry, I digress, once at the venue, my tickets not appearing to be on the door, I left my name and they were happy to let us in. The venue manger introduced himself and I will give him a Pseudonym as I do everyone, I hope he appreciates it. Both for privacy and a play on words. Let’s call him Sriracha. You know the hot sauce? I’m not into chilli and I can say, I need to get out more, even though I hit sensory overload really early.
Anyway, Sriracha lead my friend and I through the band room to a corner of the back where there was a raised area, he bought us two stools to perch on and told us if we needed anything, any of the staff could call him for me. My friend did the drinks run and had a little boogie beside me. She also got me my T-Shirt before my size sold out.
Annoyingly, being height-challenged I could get up onto the stool but it was still the right way to go. At concerts and Gigs I’m a wriggler as well as a light Head-Banger (Not the Heavy Metal kind) I’m not a dancer, even before my disability. Not after I found I could not do the Melbourne shuffle. Makes sense as I do have a Drop Foot.
Here is a link for the first song from my early club days in about ’92. Get ready for some Samples. This is in no way an advert for fast food, but still very catchy.
This song, I believe is German but translates as “I am a foreigner” You can look up what it’s about if you are interested. I travelled around the UK on my only overseas trip back in ’94 to this, good times.
This was their last song before they finished with a cover of the Prodigy paying homage to Keith Flint who passed away in 2019. Prodigy was also a huge influence in all the clubs I went to or worked for in the 90’s.
It’s frustrating for me to need to explain to people who have only known me since my diagnosis and my disability that there was a different version of Helen, who experienced a different culture, lifestyle or had different social networks. That Helen is still inside me and is sassy, outspoken and won’t be pushed around. they just don’t want to be exposed to the great things that I experienced to appreciate this version of Helen they see today; they just want to stay with the normal and what they already know. Not learn anything new.
Friendly reminder, while working in clubs I barely drank, never did party drugs, possibly the only reason I made it to 34 before learning of my AVM. My disability as I like to remind people is NOT SELF INFLICTED.
Was home by 1am, still had chores to do after my friend helped take off my shoes and my AFO (Ankle Foot Orthotic), needed a stiff cuppa T, a Bex and a good lie down. Oh, I’m a 50’s housewife.
I feel a bit like if I didn’t get the Plague Saturday night I’m bulletproof. Still not had it, still not complaining.
Now, late Monday night I’m still catching up so apologies for my delay. Lastly, Queen Elizabeth II, may she R.I.P.
Hell onWheels/Life One Handed 