The Cleaver

Kate Cleaver

A bit of writing about being neurodivergent, disabled, ethnic and a woman in Wales.

Have you ever noticed how passive aggressive ladders are? Truthfully, I hadn’t realised until we started the build.

A tiny bit of background needed here, I think.

In February 2021 we, R and I, decided to put a large extension at the back of out small 1960s house. It would eat half of our very small garden leaving a courtyard, but we were facing a potential future that would include mobility products and wheelchairs, so we thought – let’s make it pretty.

We were also aware we needed to make the house bigger. Both of us are writers but whereas I will put on twinkly music quietly, R will play punk, loudly.

We can’t share a study, so the downstairs was going to become a massive open plan space including a drawing board, study, living room, dining room and kitchen.

Oh… and my favourite, a garden room, a place that I could fill with a ton of plants and a living wall.

Watertight

Grand designs! Basically, the builder then ran out of money. We got angry, he got angry… We lived through a whole winter with a plastic bag on the roof and rain in the kitchen, but right now, as I type this, we have half a roof. It isn’t finished by any means, but we are becoming watertight and that makes me happy.

Except the ladders. I have lived with two years of ladders.

Standing there in the garden, outside the front door, in the house and currently residing in the spare room.

We are renovating the house as well and I am so glad that we didn’t do that spare room because the builder has been using the ‘fire exit’ window to access his tools that he is storing on the bed. It’s a mess.

It’s damp thanks to him not closing the window in the rain and the carpet is worse than it was, and it was awful before.

The ladder is just standing there, a judging thing of metal and plastic. It has stood there for three weeks. Our roof is only three by six metres… Surely the ladder should have left with the builder by now? How is it taking this long? Why do I still have drips in my room?

I have other ladder problems though.

I have a lot of pain; I have bony growths overtaking may hip joints and I’m pretty much riddled with osteoarthritis. To combat this, I have painkillers.

Due to the amount of pain, I take a higher rate of co-codamol which, if you didn’t know, breaks down in your body to a form of morphine.

A lot of the time I refuse to take them because I fear the addiction and simply live with the pain until I am too tired or too mentally exhausted. Then I will allow myself the minimum dose. So out of 8 I can take in a day, I take a maximum of 4. And that doesn’t sound so bad…

Well, that is where you must understand the ladder. I am on what medics refer to as the opiate ladder. This is an ever increasing strength of painkillers. It is a bit like walking around with a constant reminder that you can’t ever get off the drugs.

Not ever.

Drama

They might give me a hip replacement, or maybe two, when I’m older but because my body does the whole bony spur thing there is a distinct possibility that other joints, or even the replacement will spur.

R says I shouldn’t look for issues that don’t yet exist, and I guess he is right, but the problem is that I like to know what is going to happen before it sneaks up on me.

Now I know I make a drama from most things, hell, I’m a writer, it is what I do, but I like to look on the bright side. I like to see the positive, and I love to smile.

Another ladder? Why, of course. This ladder is a progressive one and doesn’t go up, this one goes down. The medication one I always visualise as leading into the sky. This other ladder leads into a hole.

I have the joint problem and cubital tunnel syndrome; cubital tunnel is different to carpal tunnel. Carpal tunnel results in a surgery to release the nerves in the wrist, but cubital means that nerves in my elbows are being squeezed.

I can drop stuff with no warning. My hands sometimes don’t hold onto stuff.

It can be embarrassing, dropping a drink in a pub, or dropping a pan of boiling water filled with veg.

The fix is an operation, but it is complicated. The nerves run through the joint, and they are not separate. It can work, but it can also go wrong. It can result in the nerve becoming free and everything going back to normal, but it can also result in loss of feeling in the hand.

I have been warned off this operation by my GP and physiotherapist.

Risks

The osteoarthritis is also something progressing. You see where I’m going? I can get bits fixed but I am on the ladder for both conditions. I’m sure at some point I will get the op on my elbow, but it would have to be at the point where the result outweighed the risks.

I am stepping down this ladder to a place where there is no cure. I can’t ‘get over it’ or ‘get better.’ I must live with it, and it will get worse.

I’m 46 and in the last two years I have gone from being fit and able to hike anywhere I wanted to owning a blue badge (disability badge) and talking to occupational therapy.

Occupational therapy came round recently… I am getting some grab rails and then a step or two outside so I can get out of the house more easily. The very nice guy walked around the house and pointed out where we could bring in other access and aids. And told us that there is no hope of getting a stair lift onto our stairs.

We are going to have to go for a real wheelchair lift if/when the time comes. Luckily the house will be okay for getting one installed, although I have everything crossed that I never need it. This guy though, with his tape measure and smile, made me investigate the hole to which my ladder leads and shone a flashlight in there.

I’m not sure I like what I saw. I don’t like ladders. Any of them. I wish my life was free of them.

Dinosaurs

I do like dinosaurs though. I love them… You must have seen Jurassic Park… I saw it about ten times in the cinema. I loved the place, it was an old-fashioned picture house, where you walked through a curtain to get to the screen.

It had a heavy velvet curtains the colour of deep red, the sticky carpeted floor and the smell of cooking popcorn.

There was a booth one side of the screen that you could get snacks from a girl carrying a tray so you could buy as much ice-cream as you wanted. The curved stairs to the higher areas took you past a bar that I never went in, but the sour sweet smell of beer would float around you.

This place was where I went to in order to escape. Sometimes with friends, sometimes with family and sometimes alone.

It is strange to think of going somewhere without someone. Now I don’t have to, but back then that cinema was a safe place.

Stimming

Did you know that the re-watching of a movie that you know well is a form of stimming – repetitive actions that someone with autism can find soothing – for someone who is neurodivergent?

I would slip into the storyline and allow myself to suspend disbelief. I knew that there would be a dinosaur but I still I gasped with awe and shock and horror. It was a comfy pair of slippers.

When I was in my thirties I decided to go on holiday. I was alone so I joined a group of people who loved dinosaurs. That holiday though I remember with fondness, but I doubt the guy running it remembers it that way.

I rang them and said – is it steep? Will there be hills?

No – they said – it is an easy walk.

So, I booked, and I went, and the organisers cried. None of the walks were long but they were almost vertical. You needed to have some climbing/bouldering experience. I had neither.

Now, this was before the bone spurs and the arthritis and medical issues. This was before the pain when all I had was a level of unfitness that embarrasses me and vertigo.

Vertigo.

I screamed going down some of those slopes. All the work we did was on the beach, but once there… Oh my… I saw dinosaurs. There were small therapods streaking across the landscape, sauropods moving like the giant goliaths and the bird-hipped hunters that stalked them. They were all there. Well, their footprints were.

It was fantastic and wonderful. I stood surrounded by people I did not know, and we drew and studied dinosaur footprints. I sat in a sauropod footprint! It was the same size as a hot tub.

It was brilliant. Yet to get there I had to take a fear and shove it away.

Sometimes I think that my life is like that. I have those footprints but to get there, to stand in amongst the awe and power, I must get down that slope that is covered in loose rock and wet grass.

I must fall and slide on my arse and then live in those mud caked jeans all day. I must do all that but at the end it is something so brilliant that it won’t matter.

Awe

The dinosaur is my comfort blanket and the symbol of the awe that could be at the end of the slope, or the ladder. I am not a pessimistic person, and I don’t give up, but I know that my future could be one I hadn’t imagined.

At no point do I think it is going to be one of me limply moving through life as a passive character; a person who has no control over their own story. Hell, no. I’m not a dinosaur watching that rock hurtling through the sky and thinking – well shit. That isn’t me.

I see that rock and I refuse to simply watch it. I want to study it and fix as much as I can, but ultimately in ten years’ time I want to still stand at the bottom of the ladder and be happy with who I am and what is happening.

So, I will write about those ladders of medication and pain, and futures that are not yet here, but that is just me trying to work out where that damn rock is going to hit and how I can make it work.

Now is the time to grasp my own health by the tusks or bony spurs, accept it and see if there is any way to make sure I am still as smiley as I am now.

Who fears a ladder if you have got a dinosaur at your back?