Living in an Iron Maiden

From the safety of hindsight I feel I can share this little piece of me now.

Knowing that over 5 years later, I made it. And I am constantly improving.
But in 2018? There was this.

Where is the tribe when you are sick? When you need it most?

Living is supposed to be considered a gift.

I have a confession to make.

For me it feels like a curse.

Sometimes. Often. More often than not.

I don’t know what to do with this body, with this brain, with this overemotional heart. I can’t keep quiet enough to hear my spirit speak, and when I do, it’s all distorted with judgements and nonsense. So I keep quiet. Very quiet. And wait, and listen. For what I don’t know.

Maybe I’m waiting for you.

So, where do I start? With me. With my brokenness. Or maybe with my togetherness.

I am about to move into a home. An actual home. With actual walls and floor and kitchen and all the things. The first home I’ve had for quite a few years. Living on the road is tiring. People think the gypsy life is all romantic and colourful, but the truth is, for me at least, it’s lonely, desperate, stressful and chaotic.

I kept thinking of Janis Joplin singing ‘Freedom’s just another word for nothing left to loose’ and that struck me right in the heart strings.

Every time I’d get spooked on the side of the road somewhere and have to move on at 3am.

Every time the wind picked up and rocked the van around like a tin boat on a rough sea.

Every time my bowels decided it’s time to wake up in the wee hours of the chill and find a loo.

Every time I’d accidentally parked under a tree and it started raining plop… plop plop…. Drip drip drip… drip………drip drip……..drip…. faark….

Every time I was washed over with panic attacks that wouldn’t settle and I couldn’t scream for fear of waking the neighbours.

Every time I thought I would throw up because it was soooooo freeeeakin cold.

But I was proven wrong.

There is always something to lose.


For although I’d lost my means to work, pay rent, live with others, be well, take care of myself, you know be normal and all that… I’d always had the strength of my spirit, my connection to and trust in the universe, the cosmos, the angels, my higher self, all of that. If I had known that was in jeopardy, I would have been A LOT more afraid of losing something.

I would have feared losing my mind.

I would have been justified in that fear.

I have been taking care of other people’s homes for a really long time. In my late teens I looked after my step-fathers place when he went away, and after that I got used to being in other people’s environments. Friends, family, and later complete strangers thanks to the internet. Most experiences have been good. Some have been uncomfortable. One broke me. It’s the only one I regret.

I’m usually pretty good with my gut instinct. But growing health issues were wearing my down, as was my ability to listen to myself. A community member needed a house and cat sitter for a couple of short stints, a week apart, in the inner west. I was freelancing as a driveway dweller come couch surfer and offered to help. But something wasn’t ok.

My system was in severe panic 24/7. It was my last night and I had to leave early the next day for a 5 day teaching stint out of town. I took some magnesium but my heart was still racing, trying to burst out of my chest. I took some more and it made me even worse. I moved back out into my van for security and familiarity, but wound up driving myself to hospital in the middle of the night. They couldn’t do anything but keep watch as I contorted myself into a pretzel amidst the drug overdosers and restless pains that visited the night time waiting room. Something not ok was in my body. I don’t think it was the magnesium, there was something in the house.

So I faked my way through the week of work and got ready to return for the next stint at the same house. As soon as I thought about returning my body seized up in anxiety yet again. It was so intense I messaged the owner and asked if there was any way I could get out of the sit. I was told it was too late to arrange someone else. So I braced myself.

The first night back at the house (8th December – one of those dates I’ll never forget. The other date is 3rd July, when I had my first panic attack) I hesitantly went up to the little bedroom where a bed had been set up. I climbed in a within a couple of minutes I felt as if my whole body was covered in mites or other bugs biting me. I tried to ignore it but after 15 minutes I had to get up and have a shower. There was nothing to see on my skin. I went to sleep in the van. I scratched all night.

Image by Bogdan Ch from Pixabay

The following month saw every single item of fabric washed and plastic bagged, a daily cycle which grew even more difficult in the midst of other short house sits, driveway camps and public launderettes. After a while I sought the help of a doctor which was messy as it was over Xmas / NYE and everything kept closing! All I got from that was scabies cream, confirmation of a dust allergy, and antihistamines.

The antihistamines knocked out the itch. They also knocked out my brain. I swam around in a steam filled sumo suit for a few days before thinking to look into other ways to manage the symptoms – without knowing the cause. And so began 8 months of super strict diets, baths filled with salt and essential oils, endless nutritional supplements, dry brushing, cold showers, avoiding pets, acupuncture, infrared saunas, and traveling 1600 km north to try and find some ease by the ocean. (I didn’t by the way. Turns out I’m also highly allergic to mould and there is lots in the northern rivers)

Somehow in all of this I managed to run a one week circus Bootcamp in eastern Victoria. And lucky I did – it ended up costing me thousands in treatments over the next few months.

Now, I’ve done pain. I’ve done years of it. I’ve breathed through it, cried and screamed through it, smashed it drawn it written it generated nerves of steel because of it. And I’ve done fear. 8 years of panic. I’ve gotten used to cleaning up before I go to bed just so my cadaver will be in a neat environment when it’s discovered days or weeks later, so intense has been my experience of impending death. And I’ve done annihilation. Screaming into the black depths of a pillow shoved into my throat and face as I desperately try to find some room for me in the pain of my emotional turmoil. And like so many of us, I’ve gone through so much more….

But nothing could prepare me for this. Nothing could prepare me for the torture of being forced awake night after night by a hundred needles and a thousand ants biting and prodding and stabbing me all…. Night… long…

It’s been a long time since I hurt myself. I was never a cutter, but I was a serial piercer (every new torment released itself as another hole in my ear) and occasional etcher. I didn’t understand a torment that was so huge that physical pain could bring some distraction and ease from it…. Until one of those nights. I’d taken antihistamine and had a bath but I was still itching like crazy. The hours were ticking by and those wretched teeth wouldn’t stop biting me.

My body started convulsing and screams started pouring out of my mouth, and my own fists started smashing into my body. I just wanted something, anything, to be louder than those blasted teeth. As I entered the bathroom for another shower, I had to grab the scissors and force myself to hide them in the cupboard. I was so afraid that the need to release myself from this prison was so great that if pouring my blood would promise relief I would have taken it.

A while later I curled up in bed and cradled myself in my own arms, tears streaming, saying sorry to my body for thinking so violently towards it. Holding all the bits I had wanted to slay. The guilt was overwhelming. I still didn’t sleep.

This was about 3 months after my neurological system broke down. It has taken over 5 years to get to a point of not being terrified of my own skin. I’m still on the deep road to recovery but am 90% better. And I have learnt so much about the human body in the process. Thank the Gods.

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Written by Tjoni Johansen.
Copyright 2024 all rights reserved

2 thoughts on “Living in an Iron Maiden

  1. Thank you. I had a cranium aneurism many years ago. I am ok now. I do recall years of hypersensitivity which was like being pocked constantly. Primitive instincts responded to every light touch, noise, sound. Especially when I tried to relax. Finally I had enough and threw away all the medication I was given and prepared to die. It was then that I faced my fear and began to live.

    1. Hi Lynn, thank you for your message! Wow that sounds so intense. Yes it is the ultimate surrender that somehow ferries us through isn’t it? Happy to hear you have moved through it. Blessings. xx

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