I could honestly do a post every week just on weird conversations I start with complete strangers for no reason whatsoever. And why not?
I’m definitely that weirdo who can give people a different perspective of disability/brain injury or just going for gold in a way they will remember me at the end of the week award.
Most people are oblivious I have disabilities let alone that its brain injury related. They wouldn’t even realise I’m half blind.
Last Friday, went to the local supermarket and got a few things, at the checkout was a young Asian guy with a tattoo up the side of his neck. It was a line of a foreign language that was not very wide and about two inches long. You know I asked. While he looked a little perplexed. I offered him an “out” I suggested “Why do stupid white women ask what our tattoo’s say?”
He looked a little surprised but answered “Family. Friends. And Me!”
Our day continued but I really hope that wasn’t the list of his priorities in order. I don’t have any tattoo’s but like husbands and kids, I always intended to get another permanent scar to remind me of pain for the rest of my life, that’s what my tattoo should say. Because I’ve neglected, forgotten to get any of those so far.
Sometimes, family that don’t spend time together, having to work on a problem together helps form bonds.
Once upon a time, the first time I moved house after my disability and after my removalist cancelled five hours after he was to have started the job, by which time when he rang me to tell me he’d had to go to hospital and I would have preferred to have heard from his next of kin to tell me he had DIED.
My Mum, then early sixties and me one-handed, arrived at my new home to find my bed had not been put together by my removalists. To their credit, it wasn’t actually their job to put things together and I had been warned because when I was contacted for payment, they told me they had eventually given up and left because they didn’t want to waste my money. In both of our defence mum and I were both exhausted. Mum with upper back problems, me with recent lower back disc bulge surgery, we walked in the door and mum had already decided I would sleep on my mattress on the floor.
Not far from the front door I went to my bedroom door, took about two seconds to assess and problem solve what the men had not managed to work out. “The base is the wrong way around!” Mum literally dismissed this and told me I could sleep on the floor. I, however, was not going to make this bed twice, nor make her. I should probably mention, my bed was made by my dad, a builder, or a carpenter (a Chippy!) back when I was twenty-four-ish. It’s a timber Sleigh Bed. Although wisely at the time he convinced me to not shave the foot of the bed as tall as the bed head. Half the bedrooms that bed has been in, I’ve not been able to move around even three sides of the bed. Even the bedroom I have now, getting down the end of the bed to my ensuite, I hover to go sideways and my bedroom door does NOT close. So, the base of my bed is a slat base, I’ve recently described it as glued and screwed and built into a sturdy box, so it doesn’t move. Even twenty-five plus years later.
I encouraged mum to push boxes with heavy art books in them across the floor to put under the timber mattress. I helped and using only four or five, it took the weight of the base. I wriggled the foot of the bed and leaned it against the wall. We both pulled just a fraction on the base to detach it from the bed head, leaning that also against the other wall. We then carefully replaced the base, reattached the bed head then perfectly slotting the foot back onto the base. All the bolt holes matched. I recall we were both spent but I was determined. I think mum left me to sort the bolts. Fair, wriggling on the carpet to each corner then two bolts into the middle of the centre of the base into the bed head. With the shifter to tighten and it was done.
Sometimes, I think I should revisit the earlier days of HellOnWheels when life was full, as if it’s not now and I used to do a Hot Off the press post.
So, I guess this is reminiscent of those days. Monday, usually a quiet day at home but not always. Had a video chat with a new carer agency. Proof that every now and again the stuff set in concrete moves and you need to ride the waves of change to keep the boat upright. Is that a good analogy or what. Note, not a question.
Dropped off an old doona, its cover and some pants to an op shop on HellOnWheels, local adventure and went to a business to break a note and drop off some takeaway coffee cups that my carers keep insisting on bringing into my home. Then for the weirdest drug deal ever. You know I don’t do drugs and even in my club days didn’t. So, I think this topic deserves its own post. Went to physio after running into said Physio at the local business in question. Gave him some smack talk suggesting to lessen the imminent pain he was about to cause his patients, to have a nice chamomile tea. He didn’t.
Tuesday had an extra four-hour shift with one of my favourite carers. I know like parents with their kids, you don’t have favourites you just love them differently. When the two Helens get together, we get stuff done. We even did a little local adventure. A regular lady I am friendly with in my travels noticed a different face out with me and asked if she was my sister? Sure, why not?
Admin Day, things were started, booked and we did a little real estate searching. Because, why not? I don’t want to kill myself enough already. Don’t ever look at properties you’ve lived in years earlier and look at the sale history, you will want to kill yourself.
Wednesday, standard chiro. Gave her what’s the term for the – I moved my practice to its new home gift. Was going to go with flowers but they die. Settled on orange Toblerone. The really huge box, I got one for me too and it’s already promised as orange Toblerone mousse in mid-February when some friends come for dinner. They are bringing moussaka, I made lasagna last time and they brought a delicious selection of tiny cakes. Crowd pleaser. It’s a good way to do a dinner party these days. Delivered a bag of my old well-loved Adidas Gazelles I used to wear prior to life with an AFO, those were the days. Gotta run fast to catch the other Helen.
They will find new homes with young refugees who want to play sport. Likely connecting that carer with that locomotion to donate food that is normally disposed of in the bin. I love connecting my people with my other people. Then went to the toy shop I mentioned previously. This brings us to the end of Wednesday, basically.
January has become the time of year I do spring cleaning, carers, businesses I deal with, services I use, take time off. People with children have lives dictated by school holidays, etc. So, I do stuff. Onward
Tomorrow is a new day. Maybe I’ll catch up on some data entry, that alone is a never-ending battle.
There is a weird thing about disability that people are oblivious to. It’s always feeling like I’m undervalued, misunderstood and the weirdest thing is being excluded simply by not actively including me, or someone like me. It is not always about me.
But I’m aware I push in often to remind people of my very existence, not everyone feels confident to speak up or make their presence known or heard.
Then, there’s the other times I commentate when sharing an experience with others on how I’ve been treated. They don’t even need to ask, I tell them, “It’s what I want to say, but knew better?”
But there are even people, like family I don’t speak my mind to because I presume, based on previous experience they will be offended, it will go terribly, so I bury the pain deeper.
So, here at 51, I’m learning new things all the time about chronic pain. I have a terrible sleeping pattern. If you didn’t know? It’s terrible, I love a good afternoon kip. I try to keep it just to the weekends, but it’s not always a given. It’s not seven days a week, most people would blame my years of working in hospitality. I always thought working in clubs had its own category, but apparently, it’s lumped in with restaurants and cafes.
Then, there’s having a brain injury. Also, messes with your sleep. Then, disability, depression, taking anti-depressants, etc. then the racy Lady Hormones. Must I go on? I mean, I hear rumours about people getting eight hours of sleep a night. I mean, who are they? They must be killed.
But the eating. I didn’t know fitting in three meals a day every day was hard for people with chronic pain. I just thought it was just me. I am not a morning person, so I sleep later. I therefore eat breakfast later. I have a light breakfast then get out and do stuff. I don’t prioritise lunch. I’ll eat lunch late, then I’m full. I skip dinner a lot. Sometimes, I’ll have the motivation for dessert. If that’s ice cream, because that has a separate stomach, right? Like, cows have four stomachs.
So, I know my brain and my body is constantly going between I’m digesting, going into a food coma, and I’m happy, but too full and it’s all a vicious cycle that I don’t know how to change.
Did I mention, after my kip on a Saturday I have my later lunch so much later, people have been known to comment that I lived a rather bohemian lifestyle? Yeah, that happens.
Note: any suggestions of killing or murder is not an actual threat intended to harm. Do not go and kill people that sleep better than I do. Just gently nudge them and remind them they don’t know how good they have it.
I define adulting as making decisions. I’m not even talking about good decisions versus bad decisions, but just decisions. Adulting in the other form is putting on a bra and wearing shoes ie, any day I leave the apartment.
For the people who don’t have disabilities, you take life for granted. You who have cars and jobs, family that care.
Fuck Me! You don’t know how lucky you are. Then, what? You can travel and have holidays. Shut the fuck up. We do not need to hear from you.
Reasons why Helen should not blog when she has the sads. I intended to write parts of this earlier before the cause of Sally the shit that led to the actual “Sads!”
So, as per usual I’ve had a few new carers recently. One has picked up my Friday shift, so I’ve got a new Girl Friday.
We got along instantly like a house on fire. She is close to my age which is rare and good to have some variety for sure. She has a long red plait hanging over her shoulder with petite features making me want to refer to her as Elsa from Frozen and I haven’t even seen it.
All was well, in my first 8.5-hour shift with her when we got on the topic of football. We were doing so well. Our teams were playing each other that night and she’s a Magpie’s supporter, that’s the team mascot for Collingwood. It was nice knowing you.
Over for the last weeks of the season I made several early morning texts to her, the morning after, along the lines of “I’m your face!” When Carlton beat her team. It’s OK, I knew she could take it. The game was on.
I suggested if our teams faced each other on grand final day and her team won I would get a tattoo of a Magpie on my butt! (it would be my first) and tiny. I suggested if the Blues, (yes, the Carlton mascot) won she had to get a Huge Blues tattoo across her upper chest on the left, it’s fine. She laughed. Stating “not a huge one?”
I continued to mention I would get started designing our tattoo’s. Could have been a limited release. Alas, no tattoos were undertaken. That’s the right term.
So, it’s another day, another fucking disability. Sometimes, a bandaid on one important finger on my right hand just adds to the torment. In year 9 (circa 15) we learnt how to touch type. Yes, that’s with both the hands, losing strength in my left hand while in an admin job often meant I was already saving time by only typing with my right hand. With all five fingers and thumb but rather proficiently.
Now, I’m even more proficient typing one handed, but on occasion, an injury occurs. Not from typing but in general and a band aid is sported and depending on thumb or fingers it’s like having my disability day zero all over again.
I’m a thumb texter and that is as infuriating as if I’ve cut or burnt my thumb. Because I can only text if I’m seated and I have my phone on my leg or table.
Honestly, don’t even get me started with how hard it’s getting to turn off my phone one-handed. It’s starting to be not disability friendly.
Seriously. Yes, there’s a lot of “seriously” in this post. Go try all your devices, gadgets, things one-handed and not just once, do it like it’s your only option. Like it’s your reality for now and ever after.
Apple, stop making your tech child-Proof. Well, Hell-Proof! I’m already not playing well with others by brewing an Apple user. I prefer it that way to be fair and if one needs reminding.
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.
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 