8 Years of Autism Awareness – A Reflection

This Sunday will mark my 8th Autism Awareness Day and Month. Originally it was to bring awareness of the very broad spectrum of autism and to push for more services for both autistic children and adults. Previously, autism was thought as a condition that severely affected children and was often confused as an intellectual disability. Now a vast majority of people know that it can be either mild or severe, and that those mild symptoms can still be impairing. Doctors, parents, teachers, siblings and autistic individuals have all taken part to raise awareness. Doctors and scientists have shared their increasing knowledge through research which has helped show autism as a real neurological difference and has explained much of the behaviour through science. Teachers, parents and siblings have shared their experience with taking care of someone with autism, but autistic people have given real insight into their everyday experience.

Every year on Autism Awareness Day I’ve shared my own experiences and through this blog I talk about my day to day life with autism, my struggles with interpersonal relationships and a detailed breakdown of my other symptoms.
I started this blog as a way to explain my experiences to family and friends, as I was not able to tell them these things face to face. Then parents of autistic children told them I helped them better understand what their child goes through, so now it’s become a portal of self-advocacy with a strong emphasis on making neurotypical people understand the autism experience, as well as what it’s like to live with ADHD and mental illness.

Eight years ago I was a very different person to how I am now. People who have only known me for a few years would not even recognize me from back then. I could not have a conversation with anyone. I was not aware that some of my behaviour could have been considered rude and when confronted about it I just thought people were overreacting and if they interrupted my routine I would have lost it at them, and then blamed them for not knowing that’s how I would have reacted. I wouldn’t initiate conversation with anyone. I didn’t really want to. Just prior to my diagnosis I had very severe social anxiety. My mind would freeze up when I sat with a group and though I may wanted to reply my mind was completely blank.

Post-Asperger’s syndrome diagnosis my social anxiety dissipated because I had a reason to why I was so different and I was fine with it. I didn’t worry so much about fitting in and I stopped trying to be like everyone else. I no longer envied them. Even when people made fun of me for being a nerd, I felt good that I didn’t have to go with the flow, what I called ‘collective consciousness.’
It took a couple weeks on Ritalin to make me want to talk to people though. It enhanced my empathetic ability and at the same time an online forum full of people with ADHD were teaching me more about being empathetic. Some of those posts would originally start out really hostile but by the end the more higher functioning members would be able to explain why people reacted like they did and that we need to respect differences of opinion, and always keep in mind how our words might impact others. It’s something I always noted and now it’s my default reaction to any type of news article I read, the inevitable flame war in the comments section and even how I perceive the political opposition (mainly conservatives).

Being on Ritalin made my mind feel so clear and it slowed down the noise in my brain enough that I had time to work on my social skills. I learned everything from physics to advance math and worked on a science fiction novel. The energy and clarity of mind it gave me allowed me to learn something new every day.
But then the side effects came in so I had to stop taking them, and some autistic symptoms once again became hard to manage but the social skills I learned in that time stayed intact.

In the last 5-6 years I’ve made the most progress in my social skills. It was mostly through higher functioning autistics basically revealing to me social customs and social hierarchy, most of which I ignore. I decided to learn and put into practice social skills that were polite but not ego stroking. I skipped over any rule that felt unnecessary to me, particularly the amount of lies you have to tell people to make them feel good about themselves. If I like what you’re wearing I’ll tell you, but I’m not going to congratulate you for dressing yourself like you’re a 3 year old.

My social skills are now advanced enough to have conversations with people in my very jumbled way of talking. My brain often gets stuck so conversations I start do not last long. I don’t really like talking when I hear myself talk. When people go out of their way to prove me wrong and their better conversationalists than me I just feel humiliated and really never want to talk to those people again. I mean what is the point of trying to make a person who can’t even speak one fluent sentence or even organize a sentence in their brain feel bad? I’m not giving all that effort to just be looked down on. Those people are not worth my time or respect. People like that have in the past made me just want to stop talking to people but I know there are some decent folks out there.

I’ve had to go back to reevaluating my social skills lately. I’m finding I’m getting hurt by people when it might not be their fault. Although, people use so little tact these days that they hardly notice when they’ve been rude. At times I wonder why I still bother to perfect my social skills when the rest of the world is losing theirs. But this is about me and becoming the best person I can be, even if people are becoming like the old me. Not because they have a developmental disorder either, but because they live on social media the lack of face to face engagement have lost much of that inborn empathy, not to mention the ADHD symptoms they mimic from being dependent on digital technology.

I don’t socialise that much these days anyway. When the opportunity arises I’ll take it but I’m not actively looking for it, kind of like when I was a kid. My latest ‘friends’ have just seemed to want to get something out of me and most other people want more of a take and take relationship. I do all the giving but get nothing in return. I don’t stick around those people for long.
I don’t feel connected to a single person on the Earth. I never have. There’s always this invisible wall between me and people. Whatever feeling people get from being with someone else I don’t feel it. A lot of people in the autistic community feel the same way. I’m not really saying that as a downer, more stating a fact.

As for autism awareness, well it’s time we moved on from awareness into acceptance. What that means is autistic people should still get treatment and services but they need to be included more in society and not forced to change so people can be more comfortable around them.  Autistic people have such intense focus on their interests that they can learn expert knowledge about them in a short time, and their logical brains which seem to give them a better understanding of technology is why so many employers encourage them to join I.T. The artistic autistics like me though find it harder to have our skills appreciated. I’ve been able to go pretty far in my photography. I started out as a fan who wanted to take photos of his favourite bands and then I got free access to some big shows and got to hang out with the bands. Now I’m a protest photographer which means I feel less nervous about going to protests (I don’t really have to chant words while working). I’ve been focusing more on story writing and my ADHD and my lifetime love of film has led me toward script writing. So, I can also be of some use even if I need a calculator to do math.

There are other behaviours autistics need to do in order to be able to cope. Stimming is one such thing. It’s anything from hand flapping to pacing to making noises. It may make people feel uncomfortable so parents and teachers may want to discourage the behaviour but it’s actually a good way to calm anxiety. I even do a bit of hand flapping when I start to feel anxious.

Our intense focus on interests should be encouraged too. Many us of have turned our interests into a career. It’s also a good way to ward off feelings of depression and be less focused on the things we struggle with. When I’ve returned home after having a disastrous social experience it’s good to know I can soon forget about it by focusing on something that makes me happy or that I’m actually good at.

So, when you hear about autism awareness in April ignore all the charities talking about how terrible autism is for families just so they can get a few bucks out of you, and instead focus on articles that talk about inclusion of autistic people and accepting them into the wider community. Because we are people just like you.

SJ

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My First 3 Months on Testosterone

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Trigger warning: thoughts of self harm and suicide.

Wednesday marked my first three months on testosterone and although it’s only early days I felt I should catch everyone up on what’s been happening. So, here is a blow by blow account on everything I have gone through from coming out to the pre-T days to medical transitioning to now.

Unlike others the first time I heard about the word transgender it wasn’t a light bulb moment for me. It was around 4-6 years ago when the world was hearing about Kaitlyn Jenner for the first time. I had suppressed the transgender side of myself (my real self) so much just to appease everyone around me that the only reaction I had to finding out why I wanted to be a boy for all of my childhood and teen years was ‘oh, that must have been me as a kid.’
I can even go back several years to when I was 12 and a girl at my church said to me ‘you’ll probably get a sex change.’ I was taken aback and completely dismissed the idea.
Those were the two times it was revealed to me why I liked dressing like a boy, having masculine interests and secretly wishing I could be a boy.

It’s December 2016 and for the last couple of years liberal social media has exploded with stories of transgender people. I’m still in denial but still go out of my way to defend trans people to the growing list of haters. Part of me thinks wow, I can’t believe there was this much hatred towards something that made me so happy as a child. I used to spend countless hours dreaming up vivid film-like stories about a young male protagonist, often when I was stressed out and the plot often centered on my own issues or preoccupations. Another part of me was happy I had put it all behind me. Or had I? I passionately defended trans people, often brining up my own childhood to show some level of relatability. The transphobics treated me like someone who was trans and therefore ‘mentally ill.’
I’m not exactly sure when it happened but I started to wonder whether I still was transgender. After all I was still making up film length stories in my mind about a male protagonist who was now around my age and the plot still centered around an issue I was having or trying to work out about myself.

While I still hadn’t worked out whether I was or not I had my first confrontation with a TERF: a Transgender Exclusionary Radical Feminist. She was just another angry person on Twitter. I looked at her cover photo perplexed: why did she think that men were trying to take over women’s bathrooms? I knew about the bathroom bill, I didn’t really have an opinion on it at the time. I never thought trans people posed any danger. But here was a cover image that said men were trying to take privacy away from women. It didn’t make sense to me so I asked about it on Facebook. Turns out a long term friend was also one of these TERFs. We had a bit of a back and forth argument, growing more aggressive as it went on. I brought up my childhood, again referring it to as something I was in the past and certainly am not now. She said that the patriarchal society made me that way, because of how women were seen as weak. I said I never realized anything about society or social rules because I’m autistic and was completely preoccupied with my world in my mind, but how silly of me to think that I could convince her of anything. This was all in front of my friends in family who were slowly working out that I was transgender before I was even 100% about it. Then a very old friend joined in and the argument became very heated, too heated for my friend to continue in. They DM’d me, said the conversation was too triggering. They told me they would hook me up with resources and scientific studies and told me they were non-binary.
From that moment on I was officially out as transgender. I tried using he/him pronouns but at times still couldn’t see myself as male, not nearly as strong as a did in childhood so went with they/them instead and called myself non-binary. But that was creating far more gender dysphoria than I anticipated so I went back to being a binary trans male with he/him pronouns. This was all over a couple of weeks. I felt very uncertain about everything but I had connected to the trans community and things like starting hormones and top surgery had not even entered my mind.

During this time it was the most successful time for me as a band photographer. I was applying to take photos of my favourite bands and every time doubted I’d get approved, but I did. I was on cloud nine. I was living the dream. I was unstoppable until the anxiety started to seep in. I started to hate being around people, crowds, and I started to lose confidence in my photography. I had made a mistake by buying a heavier but high quality lens, and I wasn’t as quick as I used to be when taking photos. I felt uncomfortable in the photo pit (front of the barrier) with my fellow photographers. I felt they weren’t as courteous as they were 7-8 years ago. We used to work together. We’d only take photos from one side of stage for a few seconds and switch positions with the other photographer to give them a chance to take photos from that side. We were constantly moving around and making sure everyone was able to have a turn. Now there is pushing, cold stares and a photographer spend a full minute in one position which when you only have 15 minutes to shoot 3 songs can feel like an eternity.
The horrible thing was the worst of my social anxiety happened in front of my favourite singer Cam Boucher of Sorority Noise. I was so excited to them live and when I was there I just felt everyone staring at me, even Cam. It felt Cam didn’t want me there. I know this wasn’t the case but this is the nature of social anxiety. I was so nervous and rushed that night to make sure I got down the front to take good photos that after I left the bathroom my belt was left unbuckled. A guy noticed this before me and just smirked at me. I still didn’t notice until the curtains went down on the stage. I wanted to punch that asshole. Anyone could have politely pointed it out to me but not these days, when even the punk scene has become cruel.

This would affect me more than I thought.
The next gig for me to shoot was Pennywise. This night was a disaster. I had enormous anxiety which I tried to calm by having one beer. The Bronx was supporting and I was happy to finally get a chance to photograph them because when they headline shows they don’t allow photographers. But as I started to take photos of them my confidence fell apart. I hadn’t photographed an energetic punk band in a long time and I wasn’t prepared. Pennywise may have been easier to photograph but at that point I gave up. My anxiety was so intense I couldn’t get back into the photo pit. I remember there was a section of under the stage exposed and I just wanted to crawl inside it. I went to the back of the room to have an internal breakdown in peace but there wasn’t anywhere there weren’t people. The concert hall was at max capacity. I’m usually excited to photograph a sold out show but now I was suffocating.
And that was the end of my career as a band photographer. I could get into any gig I wanted but I couldn’t function inside them. I contacted my editor and told them I couldn’t take photos of Pennywise and asked to take time off for my mental health.

It took a long time for me to realise my social anxiety was caused by my gender dysphoria.

In my on and off 12 years of being a band photographer I had totally lost confidence in myself. I decided to focus more on looking for work, my screenplay and transitioning. I went to a few gigs in the new year. My social anxiety was still huge at Jen Cloher that I couldn’t use the men’s bathroom, and it was Transgender Day of Visibility, and all I wanted to do was disappear. At Thursday a girl gave me an odd look when I used the ladies’ bathroom. I stopped using public bathrooms and stopped going to gigs.

I kept deciding to go on hormones and putting it off. After an extreme reaction to the latest anti-depressant I further delayed starting hormones. But my gender dysphoria was at a catastrophic level. I wanted to cut off my breasts myself and stab other areas I didn’t want repeatedly. I was constantly having suicidal thoughts. As I began to go to lengths to get on hormones the gender dysphoria dissipated, I was also obsessively preoccupied with trying to get rid of bed bugs.

Getting approved took only a matter of weeks and that was only because I kept putting off the date to start. When I finally bit that bullet I started on a daily gel. Previous to this I was trying to get the smell of pesticides out of my room, my clothes and towel and overcome a swelling face because of this. But the alcohol in the gel had the same effect on me. I tried to stay on the gel for over a month but my OCD over getting a face rash from the gel led me to stop drying my face and hands on my towel entirely and I started using a face washer and dried my hands on paper towels. I decided to go on injections even though I was still scared about how much they would hurt. It actually wasn’t that bad. It did hurt for a few days after I got the injections but I ease this pain my wearing loose underwear and jeans. Yes, it’s a butt injection.

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When I had the changes start on the gel I thought it wasn’t as slow as people said. First thing I noticed was my face begun to change within a few days and my hairline went back. I actually thought my face was getting swollen again. Within a few weeks my hair got coarser and drier and I had to move onto a shampoo that kept it soft. My skin started to get thicker. I remember looking at my side and wondering WTF was happening to my skin. I’ve always been hairy but that didn’t stop more hair growing on my shoulders and back. I also experienced a bit of bottom growth which is the clitoris becoming phallic. It can grow up to 3 inches. It’s pretty nice. After a month my voice started to drop.

The day after I got my first injection my biceps, which I thought had grown well on the gel, blew up. I had been working out before I started testosterone and the changes between them growing not on testosterone, on testosterone gel and testosterone injections was noticeable. My stomach began to shrink a bit, more muscles grew over my body – some areas I didn’t even think muscles could grow – light hairs covered my torso and spread to other areas of my face, I had more bottom growth and my voice got deeper.

But the most noticeable changes were the changes to mood and energy. When I got that first shot I was kinda loopy for a bit and then tired and agitated. Over the next couple of days I became a lot more impulsive. I have ADHD and over the years I have trained myself to get some control over them but with the increase in energy my decision making no longer seemed to be up to me. I got very ranty and aggressive on social media. Eventually I did calm down due to exhaustion, and I was still having depressive episodes. They seemed as normal as they usually were. It just felt strange getting one as I thought they’d stop on testosterone. I did make a lot of stupid decisions such as almost getting on two TV shows without thinking about how this would affect my social anxiety and fear of change. Eventually the 18 day period I got from my injection decided that for me, and I pulled out due to my fear of having to use public gendered restrooms.

I’m in my third month of taking testosterone and things seem to be going pretty smoothly. The changes have slowed down a bit, although I still think my face is changing and every few weeks and my bottom growth looks bigger. My voice will continue to drop, and my acne will stick around until about February. My torso will continue to straighten out and my hips will shrink.

It’s been hard for me to talk about my transition to people in my life, even though they are supportive. My mood problems get especially hard to deal with because of that fact. Earlier in my transition I said I didn’t think I needed a gender therapist to talk thing through with, that I could be strong enough to medical transition but I was so wrong. Having someone to talk about my physical and emotional changes to has helped me so much. It’s worth every cent I pay. I might feel poorer after I pay my therapist but it’s so worth it. I really wish I could find the strength to feel validated for my gender within myself but it’s a harsh world out there especially to trans people, and we need to be told every now and then that we’re brave and that we are who we say we are. My family is supportive but they don’t know all the language to use and what to avoid to say so us trans people don’t feel triggered and become dysphoric. The words people say and how they say them can really affect someone emotionally, make them think, make them re-evaluate themselves and may affect what decisions they make in the future, so choose your words wisely. This is basically what I think of every time I try to respond or confront people.

The next steps for me are to overcome my fear of using public bathrooms, either gender. I’ll have to do this soon as I want to start seeing live bands again and get back into my photography. I also need to decide whether I want to learn to stand to pee using a prosthetic. I spent $200 on one but I so far have failed to pee standing up. I tell myself I could probably stand naked with a full bladder for 3 hours and no pee will come out. The only time it has is when I had two beers.

So, here’s to being on testosterone for one more month..two, five, eight, a year, life.

A Trans Boy Outta the Closest

A few things have changed since I wrote my last post about being transgender. I’ve decided to call myself Sanjay instead of Shaun because I really don’t want to be ashamed of being Indian. It would just feel weird having all my brothers and sisters with Indian names and me with the most western name you can think of. I have a thing about given names too. So I’m Sanjay Upendra Roy. Nicknames SJ, Jay, Sans, Suhn and the Big SUR. Ha, I’m kidding about that last one. My middle name was my dad’s given name but he went by Acharya because he was a spiritual teacher and I hold no such position to take that name, even as a nickname. I’ve since seen a girl who has Acharya as a surname though.

So, I still haven’t taken hormones. I keep delaying it over skin breakouts and any slight sign of illness. I’ve come to the point where I have realized that my skin and health will never be perfect and I may as well just see what hormones do to me when I am in less than perfect health.

The worst part about medically transitioning I think is waiting. Waiting to get approved, waiting to get prescribed and then wait for all the changes to happen. I think I have made it to step two. But there’s still a lot of waiting time in between. I’m just trying to stay patient and preoccupy myself with other things.

I’ve sort of made a short cut with getting approved for hormones. The clinic I go to shows lenience to people who are so desperate to get on hormones because of the intense dysphoria they feel. But it’s still not a complete approval. But I’m told my psychologist can do the psych eval and I’ll probably have that on Tuesday.

The transgender community has been really helpful with helping me feel wanted and loved and valid but I think it focuses on too many negatives. I mean if arguing and sometimes mocking transphobics helps them then all power to them, but I find it more triggering hearing those people’s opinions so I’m backing out of any discussion about it. I don’t have to prove my worth to people who hate me. I don’t have to prove the science behind being transgender. They can think I’m mentally ill. I’m mentally ill in other ways so it’s not the worst thing to be told.

Not all of us in the transgender community agree on the same things and it’s disheartening to see people stamp all over your views and treat you like you’re as bad as the haters. We all have had different experiences and have different opinions. I’ve grown tired of people telling you how to think and the word policing on social media. I know I’ve done it myself and I just think it really starts more arguments than ends. At the end of the day it’s how you treat people that should be more important than what words you use. There will always be someone over sensitive to word usage. I’ve seen that in the autism and disability community and it’s in the trans community as well. I often ignore it because no one can tell me what to do. I’m a respectful person who believes in diversity. I’m not sexist/racist/homophobic/transphobic/ableist etc. Speaking of ableism I think people call anything that they feel slightly offended by as ableism. There comes a point where you just need to realise the problem is you’re just too sensitive to words and it’s your own problem. And I’m saying that to myself as well. I once tried to stop or de-educate the ‘eugenics mindset’ but it’s far too late for that. The damage has been done over 80 years and now we just need to treat those with mental illness and disability better than our ancestors did. I’m taking myself out of the eugenics debate.

I’ve also come out as gay. It’s hard for a trans guy (and even trans girls) to live as a gay person particularly when pre-hormones because you’re not yet ready to start dating your preferred romantic partner. At least I’m not. It also makes me wonder whether I want to be stealth (not revealing I’m transgender). In the trans community I feel stealth trans are looked down on, because they’re not really out about being trans. But there are many types of trans who don’t fit the mold of your typical transgender person and those people are constantly told they are valid, so I’m here to say stealth trans are valid too. We all express our identities in our own way and even before joining the community I knew I didn’t want the label as transgender. I don’t think I’ll be stealth just yet but once I feel I pass enough I will, because it’s my own damn life.

I’ve held in a lot being on social media so what you’re reading here is some brutal honesty. Why can’t people just accept you as you are and not try to change things about you just to fit their image of how you should be? People have always tried to change me. They tried to make me seem more feminine, neurotypical, less nerdy and now an acceptable version of transgender.

But because of my pathological demand avoidance syndrome I reject them all. But I in no way identify with my PDA as fellow PDAs want me to. PDA is not me; it’s the monster inside me. The monster makes it hard for me to get along with people, start romantic relationships and it severely limits my experiences in life.

The post is a jumpy ADHD mess but it’s all I’m capable of writing at the moment, so it’s the best you’re going to get.

Fixed Fantasy & A Trans Kid In the Closest

Sometimes I think people might think it’s strange for me to choose to call myself Shaun, a Western name, than choosing an Indian name, but there is a story behind this and it goes all the way back to the year 1990.

I was five years old and just starting my first year of school in a new town. I moved up from Old Erowl Bay, an isolated town in the South Coast of NSW, Australia with a population of 800 to Nowra; one of the main South Coast towns with a population of 25,000. Everything was new to me: a house with doors, streets of shops, houses lined up side by side and a massive school for kindergartners up to year two – don’t even get me started on the Primary school down the road, and the high schools seemed like big islands of brick buildings that reached up to the sky. It was all quite overwhelming for a little five year old autistic kid.

Just over a year ago I had been, not quite of a talker but I at least talked. I think I was overwhelmed by my massive school that made me crawl back into myself and not talk for the next ten years. So, I didn’t make any friends. In those days it didn’t really bother me that much. It just wasn’t my thing.

Also a year before I started school I began to experience feelings of being born in the wrong body. It was subtle at first, more of a preference for male things. I absolutely despised being dressed in dresses. As I was only four and a late bloomer I was still unable to dress myself. In those days in the old sea side town close to Aboriginal refuges I used to dress in a t-shirt and shorts and walked around mostly barefooted. I watched a lot of films and I mean a lot of films and fast become a little film buff. Over the years films would become my greatest teacher especially during the period where fear had taken away my voice.

In my first year of kindergarten I found myself roaming laps around the schoolyard alone and completely absorbed in my thoughts. I had a very vivid imagination. I could dream up images that seemed so real I could just touch them. As I grew the need to live as a male grew stronger. Most of my interests were being dominated by subjects in those days that seemed masculine. I was asking my mother personal questions about my only male friend’s body. Derek was my only friend who I had known since I was a few days old. Our mothers had gone to the same church and gave birth to us in the same hospital. We were in the same church and went to the same school, often in the same classes. Friendship was inevitable and he was the only person outside my family I actually talked to.

That was another thing I did: I got along with boys better than girls. It might have been the interests or just that desire to be one of them or a combination of the two. I was one child in a family of three girls and one boy and I looked up to my brother a lot. My mother used to say I worshiped the ground he walked on. And because my interests were similar to his he didn’t mind letting me hang out and play games with him. I think he liked that I seemed more like a brother than sister. I was still closer to my sisters which meant I was picked on more. My brother did pick on me but he even picked on me like I was a boy. I can’t imagine him ever picking me up and throwing me over his shoulders if I was more feminine. That’s how he greeted me one day when I visited his primary school. He and his friends played rough with me but I didn’t mind because I got to hang with the boys.

Some days I was really uncomfortable to be in my body. I hated my long hair which was too much work to take care of. I turned back to my films, the majority of which had a male lead around my age. In the 90s the main character in a children’s film was mostly a lonely boy who was an outsider and that was somebody I could relate to. I never picked up much from the children around me as my social skills were underdeveloped, almost non-existent in those days. The only children I could actually watch and learn from were characters on the screen. It was easier to focus on them because there wasn’t as much going on the screen as in real life. I felt more connected to those children in films more than I did anyone in the real world. I started to copy their sense of dress and mannerisms.
I’m not sure when it happened but one day at school I started to dream up my own male characters in my imagination as I roamed the schoolyard. I made up stories much like the plots of the films I watched. My imagination was now able to conjure up pictures so vivid I could close my eyes and watch a film of my own creation. Over time these films had a setting, a synopsis, well developed characters and themes that related to my own situation. When I was bored I could just think up a story to pass time, pause it when I needed to get back to the responsibility of being a child which was usually avoiding doing homework and spending the whole time drawing or exploring the outdoors or playing with my siblings. Then as soon as I was done and was left alone I could continue the story from where I left it. Sometimes I would zone out while watching TV and start ‘watching’ my own story. During one day when I was off sick from school I was able to play a film in my head from beginning to finish. It lasted an entire school day.

Psychologists call this Fixed Fantasy and it’s viewed as more of a personality disorder usually affecting those with social anxiety. I prefer to see it as more of a gift and something one could even make a career out of.

My characters were kind of like character actors or an actor who played different roles yet were basically the same person. Sometimes I had the same character in name and appearance for five or so years, but over the years I would come up with a different character. Lately, I have come up with a different character every few weeks.

When I was 10 and under there was a sandy haired boy named Matthew. Prior to that I wandered around the half built brick fence of a church and came up with a character called Josh. When I was 13 I was really into gangster films so I started coming up with stories set in the 20s and 30s, usually about a boy my same age. When I was 16 or 17 my gender dysphoria was so bad that I was addicted to my imagination. I was unable to stay in the real world while I was doing classwork. I literally had to stop making up stories for a while so I could finish high school. I started it up a year later. In my early 20s to 30s a 14/18/22 year old boy with a black mop of hair called Alex took up most of my time. I even got some of his stories down on paper when I tried to write my own science fiction. He was based on Dennis Lyxzen, the singer of Refused and a boy I danced with at an emo/punk club called Hot Damn who was actually called Alex, who my friend tried to hook me up with but we were both too shy to talk. Around this time it was seriously common to find an autistic male called Alex, so I began to write my own screenplays about an autistic character. This was at least a decade before the trend of writing in an autistic character made it to mainstream films and TV drama.

Focusing on these stories in my childhood in particular was my safe space. It was the only place where I could explore being a male, where I could live as one without facing ridicule from strangers, family members and even friends. In those days everyone gave me grief for it because transgender just wasn’t a term we heard. I didn’t even know such a thing existed and no one around me knew either. There was no option for me to live as a boy, to live as the real me. It was just too weird. On the bright side there was no hateful transphobia. No one wanted me dead. I would enter a girl’s bathroom and people would think oh, they’re a tomboy. I liked that term for me because it made me feel like people were seeing in me what I felt inside.

When I was living through a stressful time my film stories would give me a quiet alone space to work through them, to see the absolute worst result but also reach a solution, a choice that often was too difficult to make in the real world. When I was half-way through them or almost finished them I had gained a much better understanding about certain issues I was having. All the time it was being played out by a boy, someone in the body I so desired for myself.

At least 98% of these stories were set in America, while others were in England. Only two were set in Australia. It was mainly because of what I grew up watching on the screen: children’s movies mostly out of Hollywood. I was also for a time homeschooled through an American text book. I understood more about American geography, history and culture than I did Australian.

The reason I called myself Shaun was that it sounded similar to my given name of Shanti, which I think is such a great name for a female and I am definitely going to use it again for a character down the road, or maybe even name my own child. I felt it would be easy for people to remember to call me that. Also, one time my history teacher once mistakenly called me Shaunti and I thought it was interesting as it was the only time someone had accidentally called me a kind of male name. But it’s basically because it makes me feel connected to those boys I created in my mind and those boys are an extension of me. They allowed me to express myself fully in a time where doing so would paint a target on my back and result in me being ridiculed by siblings, parents, teachers, mailmen – you name it. I’ve lived in my head with these boys who I have known more intimately than any person – I’m basically their God – and I’ve grown up in a western country, so I feel closer to the culture here than I do Indian, though one day I hope to become better acquainted with Indian culture, and maybe then I’ll be comfortable with an Indian name. I may also wait until hormones change the shape of my face because as a writer I need names to fit the face. Scientific research has found that the name we’re given as babies can influence the shape of the face, but someone who renames themselves in adulthood just won’t go through that.

I had never come up with a character called Shaun though so I made one. These days it has been harder to come up with complete cinematic stories in my head and I think this is because I don’t need them as much because I’m out and proud. One thing I’m still trying to figure out is my homosexuality and dating so I’m currently fixated on a story about a gay autistic on the aro spectrum.

I’ve come close to getting these stories down on paper. I’ve self-taught myself how to write novels and screenplays and I’m taking this opportunity to create awareness about what it’s really like living with autism, ADHD, pathological demand avoidance syndrome, bipolar and other mental illnesses, and have been thinking about creating my own LGBQTIA+ stories. I’ve always felt writing your own novels and films are good way to educate others and maybe even change some preconceived notions about how people see the world.

 

 

Spy Photography’s Journals

I had such a good response from my very personal very triggering journals that I decided to share some more journal entries focusing mainly on my band photography. And because it’s related to my band photography you get to see some pretty pictures.

Sunday, July 2nd, 2017

I’ve been rapid cycling. Yesterday was probably my 80th attempt at giving up my photography in two years. Thinking about it at least.
But then I remembered I’m seeing Sorority Noise in September and became excited about photographing them. And Speaker might next send me to Grinspoon. So I’m starting to remember why I wanted to be a band photographer in the first place – to both see and photograph my favourite bands live. Somewhere along the way I lost sight of that direction and saw it as a monthly attempt at getting the most hits and likes on social media. Tim Rogers was right – it is toxic.
It’s good to have another long break though to spend some time watching Stan or Netflix, play video games and work on upgrading my PC.

Tuesday, August 1st, 2017

I’m always beating myself up over everything.

In order to explain such a statement properly I’m going to have to talk about the second last gig I shot. Getting to shoot Grinspoon came upon pretty suddenly, although I did apply to shoot the show in the first place I didn’t think I will get approved. The last show I shot for Speaker TV was The Living End and that was only because I was piggybacking on the end of two other photographers who didn’t end up on the list but were approved by their publications. I had no such approval but I kept quiet, didn’t once utter I had official clearance so technically I didn’t lie about it. I had traveled from Sydney to Wollongong with a heavy bag full of expensive lenses – I wasn’t going to cloak that. If I didn’t get my camera in I would rather have walked out, gone to a pub and sulked rather than cloak $4000k worth of equipment.

Phil Jamieson from Grinspoon at Enmore Theatre, July 7, 2017

Phil Jamieson from Grinspoon at Enmore Theatre, July 7, 2017

I wasn’t really prepared to shoot Grinspoon when I was approved but I did feel confident about it. The day of the show I felt pretty positive when I cleaned my lenses and packed them away in my camera bag but that night when I was walking to the bus stop out of nowhere I had trouble breathing. ‘What is this?’ I thought. ‘Is it anxiety – from where?’ I kept feeling anxious as I went onto the bus. I tried to analyze the situation in my head. I was going to Enmore Theatre in Newtown, a venue and area I was really familiar with. I normally felt this anxious before a gig if I had to go to a venue I’d never been to before in an area I wasn’t familiar with. This didn’t make sense. If that wasn’t bad enough certain elements within my environment that should be static started moving around and going in and out. I felt like I was on some sort of drug. Was this what they call derealisation?
My nerves continued even when I got inside Enmore Theatre but eventually they dissipated as my central focus was put on photographing the opening band. During Grinspoon I was stressed out over missing all the best action shots. It was hard to find a good spot to shoot from because there were these machines lined up at the very front of stage that spat out confetti and smoke. The effect looked nice but they were dangerous for me to get too close to.

If I’m to be completely honest I’m really disappointed with how the photos turned out and I’m confused to as why people really like them. I missed all the good action shots and I should have chosen a wider lens as my main instead of flaunting my 70-200mm wonder lens. But it was a learning curve for me and I will get my chance to do better next time.

The next gig was Pete Murray and I was even less prepared because I forgot I applied for it at all. The whole night I didn’t feel like any of my photos were in focus and I had to keep adjusting my settings. Then when I got home and actually looked at them on my computer the shots I thought were blurry were actually quite sharp and in focus. I had the same problem at Grinspoon – I thought hardly any of the photos turned out after I took them, and to be honest a lot of those photos ended up being in focus too.

So, this is my problem. I keep thinking I’m taking horrible and under focused photos when I’ve done the opposite. It’s frustrating for me because when I think I’m taking bad photos I basically give up taking any more. Like at Pete Murray I didn’t make many attempts to get a shot of the band from the crowd because I thought hardly any of my photos from that night turned out.
I just need to be a bit easier on myself because beating myself up over taking poor photos can ruin my whole night.

PeteMurray_EnmoreTheatre_04

Pete Murray at Enmore Theatre, 29th July 2017

Wednesday, August 02, 2017

 The next gig for me to shoot may be New Found Glory from the USA. I got the e-mail from Speaker TV about it yesterday. I have a bit over a week to prepare. I need to remember to remain confident, just not tire myself out too early or drink too much; that will be easy as most alcohol in music venues is rough on the palette, worse on my stomach and overpriced. I might check out some live photos on them as well as videos to see what lenses I should use. I’m expecting there’s going to be a lot of jumping around. I have seen NFG once by accident really. They were a support act for a band I was seeing. They were good and they didn’t have crazy energy so it should be a pretty easy show to shoot.
I want to review the show as well. I have plans to start up my own arts and entertainment site – reviews, opinion pieces, articles about the culture surrounding music, gaming, films etc. I’ll keep the name to myself until it goes live.

I’m going to have to make a list of all the bands I’ve applied to shoot to remember that I did and so I get no overlaps. I think I have Hawthorne Heights this month as well as You Am I. I’m more excited for Alex Lloyd and Sorority Noise in September and even though AFI is the night after Llyod’s gig it would still be good to go. I meant to receive my long waited copy of Destiny 2 on September 6th too. If I get approved to shoot Alex Llyod and AFI then I’ll have to wait at least a week to play it. It suits me fine. Alex Lloyd’s music holds a special nostalgia for me and it will be great to see him live, even if I have to take photos from a balcony at the back of Leadbelly, because there’s going to be dinner tickets which means I can’t get in the patrons way that paid $112 for a ticket. The biggest challenge in photographing both Alex Llyod and AFI will be in the fatigue that will follow as my chronic fatigue has proven to become quite a problem for me.

My Canon 70-200mm f/2.8L IS is being delivered to me too. So by the end of the week I can have a play with that. We can see how good its image stabilisation really is.

Right now I am content to continue reading Alex Rider, applying for both writing and photography jobs, writing blogs, working on a screen play, exercising, watching Skins on Netflix and maybe playing some Iron Banner in Destiny 1.

No rest for the talented. Give me a break! I was really depressed about this before, so now I’m feeling overconfident and a bit arrogant. I’m not very good at balancing my emotions. Extreme highs or extreme giving up – that’s the best you can expect to get out of me.

My Ordeal to Get Back on the Disability Pension

This was originally going to be a letter I would send Centrelink about my severe and almost constant suicidal thoughts, but it ended up being too long so I decided to keep a 2 week long journal about my ordeal, writing down my thoughts every few days about the events that happened and my mental state at the time. I will have to issue a trigger warning as this is a completely uncensored insight into the thoughts of a person who was seriously thinking of taking their life. I understand if that’s too much for some people to read, for others I hope it makes you understand just how severe anxiety can get and not all people want kill themselves because they’re depressed.

Let’s begin.

Screenshot 2017-06-21 15.02.51

Five w
eeks ago I had planned to commit suicide if I wasn’t able to be transferred from Max Employment to another disability job employment agency. For two years I had either gone into that place feeling suicidal or leaving it feeling suicidal. I always flirted with the idea of stepping out onto busy Marrickville Rd and instantly ending my pain. The day I tried to transfer my consultant (the most coldest and uncaring man I’ve ever met) said he would do the transfer but while I waited for the transfer to go through I had to keep doing what he said. That meant going to information sessions to jobs I was unfit and unskilled for, while doing my own job search. I still had to see a man that thought someone with chronic fatigue could work at an airport doing a physically demanding job. He never listened to my concerns and as much as I wanted to say being in your presence made me want to slit my wrists I couldn’t. I went straight into Mission Employment who couldn’t take me in because they didn’t work with people with disabilities but they gave me a number to call. I pleaded my case to the person on the line and when they told me coldly that I had to go for jobs that the consultant says I cried silent tears. It just seemed like no one would listen to me. But they did transfer me immediately to WISE Employment.  Those last couple days I was on my feet constantly. I had to go to an information session about a job at the airport and the same day I had to go to Wollongong to photograph Against Me and I was experiencing foot pains from a fully developed Morton’s Neuroma too. The next day I had to job search at Max Employment so I decided early to transfer that day. There was also a book signing for Laura Jane Grace, singer of Against Me to attend and a second Against Me show to photograph. That night I became seriously ill from exhaustion. My only memories that night of watching Against Me were of stomach pains, breaking down into a fit of crying in the toilets and having a seizure throughout their whole set.
WISE replaced old worries with new ones. Now I was anxious about being unable to apply for 20 jobs a month and in my mind that meant having my pension cut off. The suicidal thoughts started flooding right back.
In both cases I was unable to tell the consultants face to face. Autism. Go figure.
After writing an e-mail to my consultant, Marie, she asked me to see her right away and contacted the mental health team. She said I didn’t have to worry about applying for 20 jobs a month, changed it to 12 and became even more lenient with me. I finally felt like someone was actually listening to me. Not just mental health wise but it sounded like she was putting me on a path to start my career, to work doing something I enjoy and am skilled at (photography). Hope was restored.  But when she tried to change my job plan she saw I had been suspended – still getting my disability support pension but didn’t have to do job search until I was reassessed.  Marie had reassured me that because I have been looking for work though I’m on the pension I would probably not get cut off. But it wasn’t enough. My anxiety sky rocketed and my suicidal thoughts returned more vivid than ever.
Still, I gathered up medical documents like Marie instructed but when I felt it wasn’t enough I organised to see my GP.

This is when everything started to go wrong.

I asked him to do another mental health check form with me – we do these every four weeks. When I did he said I sounded like I was exaggerating. I looked over the test – I was interpreting the questions in my own way, not the way the writer of the questionnaire intended. It’s something I often struggle with.  I started to panic. They won’t believe me. Then when I asked him if he would reassess me for chronic fatigue (I was diagnosed 15 years ago on the South Coast – it’s not on my record) he lectured me and made it sound like to get over my mental health issues I needed to get busy; socialise, study and get a job. He seemed happy for me to lose my pension even though it meant poverty and forced to work full time when I only have enough energy for 8 hours per week. I would also lose my support from WISE Employment who were the only people guaranteeing me a future. I don’t think he understood I am already looking for work – it’s only a part pension.
I felt dejected. I put on my most depressive mix music playlist and walked home feeling empty inside.

The next day mental health workers from Crisis Team, Camperdown came to my place. ‘Finally!’ I thought, ‘they will help me and give me a report to give to Centrelink.’ I told them I have high anxiety. They didn’t flinch. They didn’t empathise. They outright denied I could have bipolar because I failed to describe my manic episodes. They made it sound like getting a hobby would take away my anxiety, depression and suicidal thoughts. They looked at my symptoms as less a part of a disorder and more emotions.
When they left I burst into tears. There was no help for me. They refused to provide documentation I could give to Centrelink during my reassessment.
They told me to go to Headspace. My sister said it was a good idea. She said I should see a different GP at the medical practice. I made an appointment.
During all of this I had four days of severe period pain – another medical condition I would have to get treated for after all of this was over. Also, I need foot injections for my Morton’s Neuroma. Living was too painful. If it wasn’t my emotional pain that made me want to kill myself it was my physical pain.
That night I had such severe anxiety over staining the carpet I couldn’t sleep and I felt like my heart would explode. I was either having extreme anxiety over that or the reassessment.
Then, I became hypomanic. Hyperactive. Overconfident. Impulsive – I wasn’t taking the usual care I would, particularly to avoid a hypoglycemic crash. My high anxiety and suicidal thoughts that I felt daily for hours before we’re gone, felt like foreign concepts to me. I no longer cared about the reassessment or losing my pension. I had to force myself to care, if I didn’t I would not have enough medical evidence to be allowed to stay on my pension. But I was so happy and carefree that nothing could touch me. I couldn’t walk – I ran. I didn’t have my own personality. I was mimicking someone. Someone in control. Someone who made their own decisions. Someone that never showed their weaknesses. I could have lost everything if I didn’t snap out of this mood soon.

FRIDAY

During all of this anxiety and suicidal ideation I had a Paul Dempsey gig to go to and photograph. Somehow I had to put all my worries to the side and do one more job for my editor. I didn’t actually care. I was just going to go to get it done. It was the first gig I would officially shoot for a music website I had tried desperately hard to get a photo pass through. Before that I had to go see a new GP to see if they could give me a medical certificate. I had an anxiety attack in the waiting room. I was told the doctor would see me a bit late, it felt like hours. Every time her door opened and someone was let out I thought it was my turn. I was either hopeful and confident of what I was going to say or I had a huge blind blank. But every time the door opened someone new went in and my dread grew even worse. Most people who walked out walked out with smiles on their faces. I didn’t think that would have been me. I drew my attention to the TV on the opposite wall above and zoned out. I felt no anxiety, depression, happiness. Nothing. I was a hollow emotionless shell of nothing.  Barry Manilow was singing with some people I didn’t know. Was that even Barry Manilow? I was so far gone I didn’t even know what Barry Manilow looked like anymore. I checked the time. Only half an hour had passed yet I had seen at least three different TV shows.
When it was finally my turn I was sure to mention I was feeling anxious, then all my thoughts about all the stuff I had been preparing to say gushed out like a waterfall. At first the GP didn’t want to write me the medical certificate so I told her how bad the previous GP had been, that it didn’t sound like understood me at all – weeks or months all wasted. I didn’t stop talking even as she was typing out the medical certificate. I made it clear that I was on a part pension, meaning I could work a little bit but not full or even part time. I wanted that to continue. I wanted to see WISE again and have them give businesses a subsidy to hire me, because there was no other way for me to get employed.
After she wrote me the medical certificate my mood was immediately lifted. I was able to put all my attention on going to the show that night. In the pit – the part where press photographers go – I smiled internally as people in the crowd would marvel at the size of my 200mm lens and comment about how many lenses I had in my bag. They thought I was a pro, not the shivering mess of anxiety with no hopes or plans about the future that I was lately. Later when I was deep in the crowd watching the band from behind the sound desk I made a point to look around. If I had taken my life a month ago I wouldn’t have been there. The two members of the band onstage that I knew would have no idea and still had no idea of what I went through. I also looked around to take one last look around at a room I may not see for a long time. If I did get a job I wouldn’t have energy to do my band photography, but I would have a burden off my shoulder. I wouldn’t have anxiety about financial trouble and I’d stop feeling useless. I would always have anxiety, depression and mania especially seeing how no doctor believes me about having bipolar and I’ve stopped believing it myself. There would be no treatment of my symptoms, no alleviation of them. I would have to learn to live with them and manage my chronic fatigue so I didn’t end up bedridden. Working a job and doing my photography on the weekend would guarantee my fatigue would get worse. I had a few near collapses when I did that before, though an idiot like me would always push myself too much if I got obsessed about something, like photographing two Against Me gigs and going to the instore and lately my plans to cover Sydney Supernova over two days. I never learn my lesson.

MONDAY

My depression returned. I had spent the whole weekend editing Paul Demspey photos and lamenting the loss of a friendship that never happened, that never built into more even though I wanted it to. It wasn’t enough to make me feel suicidal. I had been through so much that made sure I wouldn’t go down that path again. I was nervous about going to the Marrickville Health Centre and telling them everything I forgot to tell the previous mental health workers and my GPs. Crisis Team called me on the weekend, a woman this time. We had a long talk as my mood was a lot lighter and she recommended I go to the health centre. I went along and prepared for the same disappointment. It didn’t happen. Lorne just listened as I spurted everything out. Everything I said to my GPs, the four mental health workers, my consultant at WISE and everything I didn’t get to say to them. I had done this so much it was getting tedious but I was getting better at it. He told me to explain exactly what my thoughts were like when I thought of suicide. I was taken aback by it. I told him I visualized it like a movie, from the moment I do it to the reaction of people who know me; family, friends and most importantly the musicians I know. He convinced me to go back to my GP and ask for a mental health care plan and to see a psychiatrist. He said he will find someone for me who specialized it PTSD and CBT. I never got help for my PTSD so I was filled with both hope and dread. Then I brought up that I was transgender but felt stuck because being on welfare I could never completely transition. He told me it wasn’t true and then gave me a name of a transgender therapist to call. I held the note with the words scrawled on it like it was a golden ticket to my new life, the life I was always meant to live. I was full of hope again. I liked talking to him. When I left my doubts came back. My anxieties over the reassessment came back to me. I knew I had to get control of it.

I decided to play the video game Destiny that night. For the entire time I played the game my thoughts didn’t worry about the reassessment. I planned to play more, get deeper into the game like the hardcore player I was before, but I wouldn’t play it during the day because although videogames help me through tough situations I can get so obsessed with them I don’t want to do anything else.

TUESDAY

Last night I got a message on my phone reminding me to attend an appointment with WISE Employment tomorrow. Early in the morning I contacted Marie about it. It didn’t feel right because I was on suspension. She told me yes I was on suspension…until 2019. I was confused. I thought after my reassessment that if I was successfully still able to continue disability I could go back to WISE either on the Tuesday after my Centrelink appointment or a few weeks after they approved me to continue the DSP.  Now all my confidence and calmness about the issue turned back to anxiety and more suicidal thoughts. This was exhausting me. I needed to play more Destiny. I needed to keep myself busy. I need to do something, anything, right now and always. I couldn’t allow my thoughts to wander. I needed to clear this all up with Centrelink on Friday, for now I would have to live with my confusion, doubts, anxiety and the occasional suicidal thought.

FRIDAY

I HATE MY LIFE.

I’ve been playing Destiny more. It’s the only thing that keeps me sane. The amount of thinking and focus I need to make to play the game silences all of my doubts, at least temporarily. My sister makes it sound like I’m playing it too much. She doesn’t understand that I have to. I only play it at night though. The days are the worst. I have to preoccupy myself enough that I don’t start feeling anxious again.

I’ve started to get stomach pains and let me tell you my time on the toilet is not nice, all because of anxiety. No matter how well I eat or how much fibre is in my diet.

My appointment was rescheduled today. That means I have 11 more days of this uncertainty, of high anxiety and depression and the occasional graphic suicidal thought entering my mind. If I just stepped out early onto Parramatta Rd it would have all been over.

At least I know I’m not really suspended from seeing a job employment agency until 2019. Centrelink checked for me. I’m going to have to discuss it with Marie after my assessment.

My doctor makes me wait too long for appointments so I haven’t started the mental health care plan nor have a got a psychologist to see.

THURSDAY

I’m experiencing a lot of mood shifts from extreme highs into extreme lows. I’ve been told by countless doctors this is normal. I spent $1000 in two days – is that normal? It doesn’t feel normal. My hyper moods make me feel like I’m on stimulant drugs and my low moods make me want to commit suicide. My focus is completely on video games especially what with E3 being on, so I’ve been watching a lot of trailers for games coming soon and a lot of gameplay. I got Horizon Zero Dawn for free which is pretty fantastic because it retails at $99, so I’m going to play that. My sister made me feel like shit because I bought the game monitor and PS4 Pro. I know I should control myself but it’s not always that easy. I won’t spend my money like that for a longtime too. I just wish she’d realise how much video games have helped distract me from my high anxiety and having a mind that says suicide is inevitable over this rescheduled disability assessment appointment.

I’m back into my art…well it’s Destiny fan fiction though but it’s helping me express myself creatively and it’s helping me explain how I’ve been feeling over trans things. I’m calling the project Translight and it will be broken up into chunks of small paragraphs and poetry. It’s the only way my ADHD brain can get this stuff out.

I’m done with social media for a while. I’ll still share photos, statuses etc but I’m not engaging with the braindead populace any longer.

MONDAY

This is what it feels like to want to die…

Despite my sometimes good days things really start to go to shit for me. As I made my way to Sydney Supernova I started having doubts, those doubts turned into too much anxiety to go further. I was stuck at Lidcombe station with no idea how to get anywhere. I recovered in the pub where I decided to not go at all despite my sister trying to convince me to go and even sending me train timetables.
I had also decided to go to a show with her and take photos that night. That was also a mistake. I was depressed so didn’t talk much to people and didn’t want to. I was aware of how quiet I was, of how much I didn’t care and I just wanted to disappear. Actually, I couldn’t stop thinking of self-harming and not the kind of self-harm you survive.
I decided to take photos of the bands to get away from the group I was with. It’s not like I was going to ever say anything to them so why not? I felt anxious taking photos down the front. The bands were not really that great and I gave up during the first one. Every time I held my camera I just thought about all the celebrities who I missed out on photographing and it still kills me inside. I feel like a failure. No matter what people say nothing takes away from the fact that I still haven’t entered into the type of event photography – movie stars. Since I was a kid I’ve loved films and now I want to somehow make it into that industry. I don’t want to act but I want to tell those stories acted on screen. If I can’t then I’ll photograph the actors and crew. But right now I can’t see that ever happening.

Tomorrow is my Centrelink assessment. I’m less nervous over it because I’ve been playing video games but when I’m not I still think I’m going to lose my pension. But now I know my brother is at least there to help me out but I hate the feeling of having to rely on others. I want to only be able to rely on myself.

I still feel like I don’t have the energy to work. I might be ok for a couple of hours, as in 2, but I’m still worried about getting exhausted and let’s face it I’m not very good at communicating with people. And then I’ll have to deal with the stress of not being successful at getting the job which makes me even more depressed.

I don’t think I want to kill myself anymore (though those thoughts come usually when I have another depressive episode) but I just don’t feel a lot of confidence. I don’t like my life or myself or even the way I talk and I don’t feel like I have much of a future. Even when I’m about to make friends I don’t think I want to put them through dealing with all my messes. I certainly don’t want to have a relationship with anyone. That’s more the transgender stuff. I have no idea how I’m going to handle intimacy. Maybe I’ll just remain the same single loveless person I am.

Hopefully after tomorrow I’ll be more at ease and have a better idea of what I want to do with my life.

My appointment actually went as smoothly as it ever could. I feel bloody ridiculous over my behaviour but a part of me thinks if I didn’t the result would have been the opposite. Despite stomach pains from anxiety that I thought was my period coming. My anxiety made it easier for me to talk about what I needed to. It wasn’t even a reassessment, it was just a check-up. The lady was sweet to me and I felt reassured I was still on disability. She seemed fine with me to go back to WISE Employment which is being incredibly lenient on me ever since I told them I felt suicidal. This will help quite a lot. I’m looking forward to applying for photography jobs though I still don’t have much confidence that I can get the jobs or have enough energy to work them.

I still haven’t set up a Mental Health Care Plan. I’ll have to organise that with my doctor. I’m cringing over seeing him again but I need that number for a psychologist. I doubt they will be able to help much but they are someone to talk to. I just hope they’re not as ableist as the last four doctors and mental health workers I’ve seen.

I’ve got a good long term goal though. To continue as a photographer I need a much more powerful PC with a lot of storage space so I’m going to give my computer a full upgrade. I might even build it into a gamer PC. But it will predominately be for photo and video editing – I might become a streamer. I still need to get a new lens for my camera: a 70-200mm f/2.8L IS but that costs triple what a PC upgrade would. Even my PS4 Pro and 4k monitor together comes in cheaper. It’s a really high quality lens. It’s worth it. My concert photography won’t survive without it. I’m so sick of shaky photos that could have been perfectly crisp.

I’ve got a few more blog posts on my mind that I’ll try to post within the next few weeks too. I might even post some excerpts from Translight too. I’m actually going to write about all three of my new Guardians on PS4 (one from my Xbox years) and maybe one of my main from the last 2 years of playing Destiny on Xbox One. I write backstories for the characters I play with on Destiny – what? I did say I wanted to be a screen writer.

Oh, and yes I did just reveal I’m transgender in my journals. You’ll get a big long post about what it was like to grow up in a society that never accepted that.


 

 

 

Autism, Distrust of Doctors, and Mental Health Awareness Campaigns

Trigger warning: mentions suicide, too many times.

Recently Canada held its latest Bell Let’s Talk Day where people tweeted about mental health awareness and for every time #bellletstalk was tagged 5c was donated towards mental health services. Celebrities were especially vocal in getting the word out. William Shatner had tweeted about it with that hashtag about 12 twelve times before I even caught on. When I got the gist I was reminded of R U OK? Day, which we have in Australia so I thought I’d like to join in. But as I read through the many tweets they seemed to be statements I’ve heard many times before.

Such things like:

“because mental health is real.”

“it’s ok to not be ok.”

“it gets better.”

“all it takes is asking someone ‘are you ok?’ to make them feel better.”

It made it hard to post anything because I didn’t want to post anything too graphic or disturbing.

Eventually I went with: “Had rampant suicidal thoughts earlier but got through it. As always. Keep moving on” #nostigma #bellletstalk

40 minutes earlier I had constant suicidal thoughts and was in such a deep state of depression I couldn’t move. So, can you imagine how I felt for someone to write “it’s ok to not be ok?” Sure, it’s ok to not be ok…until you want to commit self-harm. It’s very hard for me to tell the difference between sadness and clinical depression, just like it’s hard for me to tell the difference between happy and hypomanic, and all those emotions in between.

Don’t get me wrong. It’s great that people supported this and worked hard to end the stigma around mental illness, and drowned out the voices of the denialists and trolls, and I’m especially grateful for celebrities that helped get the word out to their millions of fans, but as someone who personally experiences mental health issues I felt like I wasn’t counted in the conversation. I’ve moved past the whole ‘mental illness is real’ thing and I just thought after all these years of mental health awareness we had reached the next step to actually talk about mental health; the symptoms, the heart ache and to actually engage with the suffering. That’s what was so important about #BellLetsActuallyTalk – it opened up the conversation to people with lived with mental health issues everyday. What started as people of colour having a say in a day they felt left out of, soon contributions from all ranges of minorities came in and real sufferers of mental health issues and I took the opportunity to spout all my frustrations with biased and incompetent doctors. I ended it with asking everyone whether disabled people with mental health issues were counted in #BellLetsActuallyTalk as well.

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All the Bell Let’s Talk stuff actually distracted me from what I planned to dedicate my entire Australia Day doing, and that was teaching people about Aboriginal Australians, especially their horrid history under English colonisation and their current situation in the communities but by the end of the day I actually didn’t want to change the date or even abolish Australia Day. But more on that later.

For years I have been dealing with doctors who wouldn’t take my concerns seriously. It’s hard enough to have poor communication skills from autism and difficulty even getting words out in a clear concise way because of chronic illness, but then having a doctor disregard it because they don’t think you’re even self-aware enough to know what’s going on, is frustrating and discourages me to keep going to the doctor when I even have physical health issues.

The very first time it happened was before I was even diagnosed with autism. It was along the way. I first thought I may have dyslexia and the psychologist I went to see was entirely dismissive and hit me with a severe depression and severe anxiety label – all from doing an IQ test. This was back in the day when dyslexia was only diagnosed to people with an IQ of 80 or under.  Another time was when I had a painful and constant tinnitus. The doctor looked in my ear and said I said some wax and left it at that. The same doctor was in complete denial when I thought I may have hypoglycemia and asked for a referral to see neurologist because I was having seizures. My psychiatrist didn’t believe me either and it took me a few years to realise that the reason was probably because I reported it as a side effect to Ritalin. The doctor who made me come to that realisation said that there wasn’t anything wrong with having extreme sensitivity to light, and said it’s better to wear sunglasses everywhere to protect my eyes from the sun. Medical professionals don’t like it when you say something nasty about those drugs they’re paid to prescribe you.

None of them were as dismissive as my psychiatrist though. I have cyclic moods, which is basically what I call undiagnosed symptoms of bipolar. My psychiatrist has refused to even asses me for it despite the fact that my symptoms were ruining my life. You can imagine what untreated bipolar looks like. For a long time I saw my mania as a positive too. I couldn’t really commit to a project unless I was manic because I had more energy and more ideas just popping into my brain. In those last days I took Ritalin I just take it to get manic. I could cut a pill in half and still become manic but 20mg (less than 10 year olds are dosed with) was what I’d take to have complete wild ride and often ended up with me going into psychosis and an intense teeth grinding session.

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This photograph is a trigger.

Being deprived of the treatment I needed, my mum not believing me as much as my psychiatrist put me into a deep depression and I even used to tell him when I felt suicidal, right at that moment. I’d tell my mum that I felt so suicidal that I’d run out onto the busy road just outside the medical centre, and I was just ignored.

So I gave up. I gave up asking for help, for anything. I embraced my mania and it took a long time to see it as a negative. I let a GP put me back on anti-depressants so I could actually leave my house without having PTSD triggering and kill the delusional thoughts. It worked but 3 weeks later they made me hypomanic. I stayed on them for a year or two then thought it was probably best to have less hypomanic episodes, so I stopped taking the meds and now have less hypomanic episodes but now deal with short but intense depressive episodes.

For the 6-7 years I’ve been aware of my mental health issues I’ve had to develop my own coping mechanisms to deal with them and stay positive about where my life is heading, and just keep getting through everyday. There were no social lessons after my autism diagnosis. I’ve been teaching myself how to read body language, mimic it and how to start and keep conversations going and everything about social customs, except hierarchies because fuck that shit. I can learn social skills, apply them but I’m not joining the collective consciousness that tells you what’s a suitable subject to like, or a suitable way to dress and to only surround yourself with suitable people. If you’ve ever made fun of someone for liking a subject you felt was too nerdy or strange, or laughed at the way they dressed, or thought yourself smarter than them then you are a part of that consciousness.

Likewise, I’ve had to learn similar ways about how to minimize my symptoms of mental illness. It’s been less about learning things from others – although everything I’ve learned from social behaviour can help me regulate my own emotions around them – but is more about employing self-therapies like cognitive behavioural therapy or using the only helpful advice a psychologist told me about anxiety: the thoughts are in no way based in reality.

My seizures and hypoglycemia are controlled through strict dieting; no caffeine, very little alcohol, nothing high in sugar or salt. Because of my often low blood sugar I have to eat small meals every 1-2 hours, sometimes I can get away with not eating until 4 hours later. But if I put off eating when I begin to feel weak and light headed I can end up fainting, but usually just experience a lot of pain, particularly in the stomach and arm muscles. And migraines.

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Getting back to mental health awareness campaigns, I think they’re helpful, needed but they need to expand. They need to work out a way to include everyone who suffers from mental health issues and let people tell their stories. Every R U OK? Day I tell people to share their experience with mental illness. At first it was something I just ranted about but it took off and I just thought this isn’t such a bad thing to do. R U OK Day? is usually a day when people are encouraged to ask people ‘are you ok?’ and it angers me because they’re just doing it because they got told to, and they’re just going around asking everyone that. The day is actually about opening up the conversation on mental health so I’ve hijacked the day to encourage everyone going through mental illness to share their story, current feelings and where they think mental health awareness should be heading.

There was another mental health awareness campaign launched in Australia called Mental As. The ABC showed a range of programmes centered on various mental health issues from all walks of life. It was a great way to spread mental health awareness by showing how it affects a variety of people, like comedians, actual residents in a mental institution and people who were living normal lives that were disrupted by suddenly developing bipolar disorder, but there was a strong emphasis on mental illness being overcome or people handling their bipolar on medication. Happy endings are great and all but they don’t reflect the reality for many people in low socio-economic areas who can’t access or afford the services they desperately need, and don’t forget about what I said about biased doctors earlier.

Professor Sir Michael Marmot, director of the University College London’s Institute of Health and Equity, says that mental health issues are caused by the conditions of a lower working class, unemployment and lack of government spending towards public healthcare, and I think that can be true sometimes but I think for many of us those mental health issues are separate; genetic or triggered by the environment, and not just in the way Marmot thinks. I can certainly pinpoint the exact moments my mental health issues triggered because of environment stressors. I can give the date, time, location and even say what the type of weather was when my PTSD developed, but cannot give you any specifics of the actual event. Most of my anxiety and cyclic mood-like symptoms are basically permanent side effects to medication which is why I’m strongly opposed to drugs, all forms of medication except for codeine for severe muscle pain I experience.

But I’m not completely denying what Marmot says. Being low class and unemployed certainly adds to the stress and therefore exacerbates the symptoms of mental illness. I certainly experienced more suicidal thoughts when Tony Abbott proposed changes to the disability support pension and made all recipients under 35 years get re-assessed. Not one day went by when I didn’t feel extreme anxiety or depression. I even had a suicidal plan. My financial anxiety often got to that point in 2015. I actually became so manic that my words became unintelligible. It was my anxiety experienced during the assessment interview that made them decide to keep me of the DSP. And now with the Turnbull government forcing me to into work that has me two days a week looking for jobs that I don’t have stamina to do and none of the social skills the employer expects, I feel a mixture of anxiety, suicidal thoughts, apathy, and complete contempt of my job network consultants who are nothing but pawns of a Gilliard government plan to kick 400,000 disabled people off their pensions and into low paid work. They get no respect from me.

They could take a leaf out of the Centrelink whistleblower’s books and risk losing their jobs by doing the honorable thing and tell the public how much pressure the government wants them to put on people on disability and the dole to just get a job; bullying and  threatening to cut them off their payments at any sign of resistance. And believe me there’s a lot. Not a day goes by where not at least one person argues who gets passively aggressively talked down, or they end up storming out and risk getting their payment suspended.

There’s another source to my anxious and suicidal thoughts: Centrelink are through the Turnbull Liberal government using an automated system developed by the Labor government to weed out welfare cheats by comparing payments with income statements, and after they’ve found ‘evidence’ of the over payments they send out a letter declaring someone one welfare pay back up to $3000-$20,000 in over over payments. Problem is most of these declarations are false. It’s been proven that people either owe less or don’t owe any money at all, and at least 280,000 have received such letters, and the government has extended its number of victims to people on the aged care and disability support pension. People have already become suicidal over it but what do you expect will happen when they target people who are already dealing with suicidal thoughts? Now doing something as simple as checking the letter box gives me panic attacks.

So, there’s a lot more involved than just asking for help for mental health issues. Some people ask for help only to have their concerns shrugged off by doctors and there’s those who can’t even afford to get the right care, especially in Australia where GPs are refusing to bulk bill and the government tries more and more sneaky ways to privatize Medicare. I’m fortunate that I live close to a medical centre that still bulk bills. But with all the extra pressures of living with pre-existing mental health issues and living on handouts below the poverty line in low socio-economic areas with crime, deeply set racism, job instability and rising rates of unemployment and fearing that things will just get so much worse, there’s not a lot of hope people can have to receive treatment for their mental health issues even if they do ask for help.

UPDATE:

At the moment I am seeing a GP who is taking my concerns about having mitochondrial disease and chronic fatigue seriously. He has even given me bipolar assessment questions and has even tried to reassure me of my anxiety about having a blood test taken. And I’m finally looking into my foot pain from having very flat feet. It’s such a breath of fresh air to finally have a doctor that will listen to my concerns.

xSpycraft