hsphaven

“Welcome to the jungle, it gets worse here every day
You learn to live like an animal in the jungle where we play.”

Guns N’ Roses, Welcome To The Jungle

In my last post I said I was crying when I arrived at my new place, another caravan in somebody’s backyard. I was so scared this was the next chapter of my horror story. Unfortunately I was right.

The caravan had no sound insulation and I still couldn’t sleep. It was all feeling like a slow, torturous death. My disability worker from Gippsland came all the way out to see me again. He said he wanted to finish on a positive note before he took three months leave. I asked him to bring me something from “the dangerous store”, the healthfood store there which we always went to.

“The dangerous store and you were pretty much the only good things about my trip,” I told him.

I wasn’t sure how I felt about seeing him, though. I preferred to keep my different lives separate. I also was no better. I tried to tell him that it was not going to be fun seeing me, but he still came. He told me that I needed to fix my sleep cycle, which was completely reversed, take responsibility for reducing the noise by wearing ear plugs, and “conform to society”.

“What do you even do all night?” he asked me.

“Suffer,” I felt like saying.

I had been doing everything I could to improve my situation.

I ended up getting so overwhelmed I just lay on the floor of the caravan completely non-responsive. He didn’t know what to do and thought I was upset at him. When he left, he had a chat with Branny, the lady who owned the caravan, and encouraged her to get me to see a doctor. Branny was also autistic and had Complex PTSD. She had some sleep issues as well. She shared some of her melatonin with me, but it didn’t help.

My disability support worker from Gippsland went back to Wendy’s (who is featured in the previous “psychotic descent” series), cleaned up what I left there, and had the new caravan I was renting towed away. Wendy texted me.

“Is Peter also intending to have time to clean the old caravan and annex?” she asked me. “I would like it to be left in at least as clean and tidy condition as it was when you arrived.”

I can now see that situation more clearly and can only laugh at how ridiculous it all was and how I deserved so much better.

“Does that mean getting the rats back,” I feel like saying. I was the one who got the caravan sealed through my NDIS. Her caravan and annex was a dump, holes in the walls and paint stripped off.

Wendy continued trying to exploit my NDIS even after I had left her property, asking me if I could get my disability support workers to do more things for her.

“Can you spare that NDIS time?” she texted me. “I know that you have been generously wanting to help me manage things here. It would also be as ‘work in lie of rent’ like others usually do here.”

Meanwhile I was so unwell doctors were all telling me I should be hospitalised. I ignored her text.

I continued to live in fear. Somebody posted to a local group on Facebook that their house, which was under construction, had been broken into and some knives and a machete had been stolen. I felt like it was an attempt by this demonic agenda I was convinced was against me to “spook” me. I then went for a walk in a park in that suburb. It was just on nightfall when I arrived back to my car. My car was the only car left in the carpark. I was about to pull out and then another car came out of no where and stopped right in front on me, of all places, blocking my exit. Of course, I was expecting a group to step out with machetes and knives and murder me or steal my car. I tried to back out, almost hitting the car. They beeped at me and then left. I took off out the other exit. When I got to the main road I was blinded by the obnoxiously bright lights of a restaurant. I found myself driving on the wrong side of the road. I was lucky there were no cars coming the other way. I was terrified the car was following me home, but when I got to my suburb, it turned the other way.

I couldn’t sleep without benzos, anti-anxiety drugs. Without them, I’d wake up extremely sick as soon as I started to drift off. I was nauseous and sometimes my hands would go tingly and numb. I often trembled in bed I was so traumatised. I kept getting these zaps and tics and thought I would have a seizure if I remained so sleep deprived. But my benzos were running out. They are highly regulated as they are considered addictive and it is not easy to get more. I knew I was not meant to take them every night as I would become dependent on them and benzo withdrawal can actually be life threatening. So I tried olanzapine again, the anti-psychotic I recently weaned myself off from. But I think my brain chemistry has changed and I’m finding I am now reacting badly to the olanzapine. When I took it again, after the mad car chase, I heard all this noise in my head. I actually heard screaming in my head, which was incredibly disturbing. Then when I started to drift off I heard a loud crashing noise and jolted awake again. I think the noise was actually in my head this time, rather than outside of me. Finally I managed to fall asleep, but my brain really did not like that drug and I promised never to take it again.

I was tormented by noise from the entire suburb: a hum from the shops that I heard at night, trucks and other large vehicles, maintenance work at night, hoons, traffic, people at the nearby sports oval, machinery, hammering, tree pruning, lawn mowers, the house over the road which was under renovation. The noise would start early, at 7am. I’d be awake when the workers finished for the day, and I’d be awake when they started for the day. It was maddening. I’d have to go out for the day to get away from the renovation noise, even though I was completely exhausted and unwell. I threw some stuff in my backpack, put on my earmuffs, went to my car and found the men cutting branches off a tree with a loud machine. It seemed completely needless, especially coming from a life where I lived in a fern jungle in the bush and didn’t even have the basics such as electricity or heating. I couldn’t believe they weren’t even wearing ear muffs, highlighting just how different I was to those around me. It was torture being a sensitive soul in such an insensitive world. Often I felt like I was living a completely different reality to everyone else, stuck in this sickness amber and dying while the world went on around me and couldn’t care less. Manic people antagonised me. I couldn’t stand listening to people laughing, cheering, playing sport, and hooning about on the road. Sometimes I wondered if anyone was really happy and if the whole world had actually gone mad. On my way back from Gippsland I passed somebody walking down the street brushing their teeth. 

I moved some crap out of the backseat and into the boot. I threw a sleeping bag and pillow in there. I then drove further down the road away from the house being renovated. I then heard hammering from another house. It was really starting to feel like a deliberate attempt to torment me, the maddening “knock, knock, knock” following me wherever I went. It was almost like they saw me coming.

Next, I drove to a park. I parked at the end of the carpark and tried to sleep in the back seat of my car, but I couldn’t. There were two workers analysing the trees or something near me. I cringed having them near me, and they fed into my paranoia.

I had an online appointment with my psychologist in the back seat of my car.

“I feel you need reparenting/co regulation soothing sleep with a safe other,” she said. “Your body is screaming out very primal developmental messages.”

I felt homeless and on the run. I was too unwell to make meals or even do any shopping, so I often ate at restaurants and cafes. As long as I could last there, anyway. Usually I had to get the meal take away. Or I’d sit outside on the grass, not even at a table. I remained non-verbal all this time, writing my orders down on my phone and showing them. I must have seemed quite an unusual diner, and many people at shops think I must be deaf or something, often writing their answers back to me. 

I got the cafe at the park to fill up my hot water bottle. Toilet blocks at parks became my toilet.

Somebody in a Facebook rental group posted an advertisement about their bungalow which was down at my favourite beach. She said the property was quiet and rural. It sounded perfect, though I didn’t get great vibes from the woman from the get-go: her profile picture was a jokey and her profile was locked. She wanted to chat on the phone.

“I don’t actually speak, haven’t said a single word for half a year now, but we can text about the granny flat, or do a zoom session if you’d like to see me face?” I texted her.

“I don’t think it’s going to work,” she then said, and she was no longer contactable. It looked as though she’d blocked me.

This set me off big time, and I sent an onslaught of emails to my physio, titled “cruel world”:

“Why are people so horrible? The vast majority of people have NO FUCKING CLUE what I’m going through. I found a bungalow down at my fav beach. The lady said it was rural and quiet. She wanted to chat on the phone. I said quite honestly look I don’t speak, I have not said a single word for half a year now, but we can text or do a zoom chat if you want to see my face. Then she just lost all interest. 

This IS EXACTLY why I don’t speak.

You know people nowadays say oh everyone’s a “little autistic”. What a load of shit. The world would be a very different place if everyone was “a little autistic”.

Whatever, I didn’t get great vibes from her anyway from the get go. But it’s just shit that my only options seem to be QUIET and living with assholes, or NOISY but living with good people.

–

I’m really beyond caring what people make of me anymore. I’m done masking, playing along with this societal bullshit. It’s good people know who you are right from the beginning, rather than finding out later once invested in the relationship. Finding out they’re in love with a lie. It’s good for me too. Let’s filter out the weeds. I still don’t go around pouring my entire life story on people all the time. I am honest but controlled.

–

I wanna kill myself so bad. I hate being here so bad. Don’t worry I’m not planning to actually do it. I think it’s too risky because I can’t be sure it’s actually going to kill me, or even that I’m going to end up in a better place.

–

I would very much like to blow up this whole world

–

I should join an autistic gang and spend my remaining days fucking society up, like society fucked us up. Trying to think of things that are not technically criminal yet still disturbing. Like wearing the most bizarre costumes

–

Unfortunately psychiatry has become a supplementary form of social control to catch those who are disrupting society yet not technically criminal

–

I’ll just fuck society up with the truth

–

That evening, I crashed my car into a rock trying to back out of the carpark in the dark. This was the cherry on top. I couldn’t cope. I was so overwhelmed by everything, the traffic returning from work like a drill into my head as I tried to get out of the car park, backing my car a few inches, getting out of the car to check I wasn’t about to hit anything else, then backing it more. Thank god the car still drove, and I eventually managed to get back to the caravan.

“I’m not letting that bitch get away with discriminating against me,” I wrote to my physio. I reported her to the Facebook rental group, and also to the Human Rights Commission, though I have heard back from the Facebook group admin who is spineless and won’t do anything about it, telling me people have a right to chose who they rent to. Suicide is one of the leading causes of death for autistic people, and I know why. This is the shit we have to deal with, being born into a world that was not made for us and all the physical and mental health issues. 

“Power to the autistic folk who manage to pull suicide off,” I told my physio, who seems to have many autistic clients as they commonly present with chronic pain and the same constellation of health issues: trauma, sleep disorders, fibromyalgia and chronic fatigue, hypermobility spectrum disorder / hypermobile ehlers-danlos symdrome, cardiovascular issues such as POTS, allergy/immunology, gastrointestional disorders such as irritable bowel syndrome, celiac disease and food sensitivities, reproductive issues, and craniofacial and dental issues.

I told him I had now crashed my car into a rock.

“Sorry to hear, that it really bad misfortune,” he said. “The last couple of days have been really difficult for you, it sounds like you’re really struggling. Are you seeing Lani any time soon? Sounds like it might be worth reaching out to her. All of this will seem like a bad dream when you do finally get safe, comfortable housing. It’s just a grind at the moment, but the earth keeps turning, each day is one day closer to comfort and safety. Stay strong. 

Come Friday, after listening to renovation noise all week, I knew my only option was to crawl back to my dad’s house. The noise and my mental state seemed to be getting worse and worse. I was tormented both by noise in both the outside and inside worlds. I felt as though I was “trapped in my own mind” and was sick of the relentless internal monologue, conversations I wanted to have with people but couldn’t really vocalise. I just wanted to scream at it to “shut up”. I have been mute for at least half a year now and while I sort of prefer it in some ways, it was starting to drive me mental as well. I have never met another mute adult. Not somebody who has been completely mute for so long. I have searched and searched online to find others like me, but all that comes up is selective mutism, where people still speak to some people and in some contexts. The closest I’ve got to what I’m experiencing has been in Dissociative Identity Disorder groups, where some alters and systems are mute. There are also some case studies in journal articles about mutism being part of psychotic disorders. I can see that, but I’m not sure what comes first: being mute, or psychosis. I needed to release all the internal tension, but feared what would come out. The crescendo reached peak Friday morning. On top of the renovators, there were lawnmowers. Then I heard a man’s voice outside the caravan. In my paranoid state, which I suspect stems from my trauma, I thought I heard him say some vulgar things, such as calling me a “slut”. It all felt like my drug-induced psychosis when I took weed several years ago, but the scary thing was I had not taken anything.

My mind had also been distorting some things my physio said.

“How did you say you spent winter again?” I had emailed him. “Sorry if it sounds like a random, weird question, but I’m “hearing” things in stuff people say that’s seriously freaking me out and just need some clarity”

“Give me more context – what is it that concerns you?” my physio said. “My winters are typically spent largely the same as the rest of the year, busy with work and sport (kids and my own), but given that I am passionate about snow sports I spend a lot of time thinking and talking about the weather, storms, precipitation, humidity etc, all based around when it might be best to skip work for a few days and go skiing! It is getting prohibitively expensive these days though.

Not sure if that’s the answer you’re looking for?”

“Ah ok,” I said. “Thanks so much for your quick reply. Yes that is a relief. I like skiing too… downhill skiing. I’ve just been reading sinister things/messages into everything. Like I thought you said you like to go hunting or something. And then I felt like it was the universe’s way of tormenting me, turning the people I thought I could trust evil. It’s just seriously messing with me.”

Not long after I heard the man outside my caravan, a loud mulcher or something started up.

I vacated the caravan once again, taking only a few basic belongings. I didn’t even get dressed. The windows were all foggy and covered in condensation, making it difficult to see. I then realised I had left the diesel heater on, so returned, even though I was so fucked I could barely drive. I then drove up the mountain to a park. There was man in the carpark, which freaked me out. I carried a towel down to the other side of the trees and lay on it in the sun hoping to get some rest. My head was woozy and I kept expecting to pass out all the time, especially when shopping. I was losing that divide between sleep and wake, haunted by this sense of unreality, as though my whole life was a movie or dream. Or rather a nightmare. The silence was ruined by a lawnmower or something in the distance, which I just couldn’t deal with. I think the world is so traumatic for autistic folk that we experience it as demonic and then start to present as psychotic. My noise sensitivity was so severe I just couldn’t live in this world. I also heard a rowdy group of teenagers. At midday it became quiet, and I got close to falling asleep, but I had an appointment with my physio. I headed back to my car, passing a group taking wedding photos.

“What kind of dream world do YOU live in?” I thought.

I then drove to the clinic. I was 15 minutes early. I sat in my car, anxious about seeing him. I stuck a bandaid over my face to cover my acne. At 1pm I went into the clinic. I sat on the floor of the waiting room, as I’ve started doing. I then lay on the floor. My physio was a bit late. He finally finished with the last client, touching me to tell me he was ready to see me. He is the only person I actually don’t mind touching me. I asked for an ice pack as I needed something to snap me back into normal reality, to know that I am even alive. I’m also having a lot of trouble regulating my temperature and was too hot. We didn’t do any body work on Friday. He said it was a bit pointless doing work on my TMJ when my living situation kept unravelling all the work. He said I couldn’t sleep because I didn’t feel safe, which was true.

“No where is safe,” I keep telling him.

He found a noise cancelling band online that could be slept in. While I rested on the treatment table he wrote a letter to NDIS asking for it to be funded, explaining that I was autistic, slept less than an hour a night, and found suburban noises incredibly threatening. He wrote another letter to my GP asking them to prescribe more benzos.

“Can you just park me in one of the rooms here?” I asked him afterwards.

“I would love to if there will be someone here for a few hours, but it’s Friday afternoon and everyone’s heading home,” he said.

I could tell he cared and felt heard by him. I left feeling a bit brighter.

I stopped at a large organic store on the way back, the store overwhelming me at the best of times. It reeked of incense, irritating my throat. The carpark was busy, and a plane tainted the sky with a trail of expanding clouds, which I believed were chemtrails.

I headed back to the park on the hill. I found some stick tee pees some mysterious person keeps building among the trees. I curled up in one, and managed to calm down, almost to the point of sleep. It was getting dark though so I headed back while I could still see the path and before I freaked out. I went back to the caravan and sorted a few stuff because at 7pm I would be seeing my therapist Peter, who was near my Dad’s place. I then planned on returning home. When I left and passed through the shops, it was so busy it felt like the CBD. I wouldn’t miss the place.

When I saw Peter, he played me some binaural beats, which he said helps us process trauma. That night I returned to my dad’s place. I kept procrastinating all day. I brought the electric hotplates from the caravan which I was going to set up in my room at Dad’s so I was self-contained as possible. I had no idea how long it had been since I saw him, or even how long it had been since I saw Peter. Peter said it had only been a week since I saw him, but it had been at least six weeks since I’d seen my dad.

“Wow,” I said. “So I walk in after vanishing for 6 weeks: “surprise”. Come in looking like I’ve been bashed up and my car’s had a similar fate.”

When I got out of the car at Dad’s, the air reeked of perfume which reminded me of laundry powder.

“Everywhere reeks of fragrance right now, have you noticed that?” I texted Peter.

“No,” he said.

“It’s bad here outside,” I said.

“It’s your autistic sensitivity maybe,” Peter wondered.

“Yeah maybe,” I said. “Everything has become so heightened. I don’t remember noticing it at your place.”

“That’s because I am so pure,” he joked.

I went to bed straight away, and actually managed to get some sleep without even taking medication. I slept from 10pm-5:30am. I woke up freezing, and also seem to have really bad PMS on top of everything. The worst symptom of my PMS is this physical anxiety I get which makes my insides feel like a chemical cocktail. But I was just so relieved that I had finally slept. The pros about staying here is that I have more sound insulation and my own ensuite. I previously had to share a bathroom, which was hard with my social anxiety. Sometimes I had to go to the toilet outside behind the caravan, like the good ‘ol bush days. I then got a splinter from the thorn bush, which I am still unable to get out. I was sick of everything being so hard and “out to get me”. I thought I was going to get tetanus next, but wasn’t worried about dying anymore. I’d had enough of this life. I just wanted a quick, pain-free death.

The past 6 weeks have been some of the worst and longest weeks of my life. I don’t really want anything more to do with my previous “lives” or places they were all so traumatic, from rat-infestations, no electricity or heating, hypothermia, shooters, military planes, sexual predators, sleeplessness and other noises that tormented me. I will have to return to the last caravan to clear out my belongings, though. Right now I have NDIS helping me find another place, and there is the option of moving back to Gippsland with the family who I was just staying with. They said they have some ideas on how to make the caravan more sound proof. I don’t really want to go back to that area, but I would like to live with them. It was good for me to both have my own space, yet be close to people who felt safe and who saw the real me and could hold that. I kept worrying I was a nuisance and was sure they could feel my negativity even when I didn’t show it, but they said they appreciate my quiet presence and would like a cat minder when they go travelling. I have never had a pet before and liked being able to pat their cute kitten. The woman Branny and I are both very similar. Branny said she liked being able to talk to somebody who got her weird quirks. Her partner said Branny would like having me around when they move. As a friend said, maybe Branny and I could heal each other. They would probably appreciate some help taking care of their autistic, hyperactive son as well, who can be a bit of a handful.