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.

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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.

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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.

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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

The Conversation Conundrum

Engaging in conversation comes easy to most because of the way the human brain develops throughout childhood. We have an innate ability to pick up on social behaviour which helps us build up our social skills that by around the age of 10 we have a basic ability to talk to other children about the common things children talk about. However, for some of us this innate ability is missing, especially in those with autism, other neurological disorders or people with delayed social development.

I’m in the latter category. For me personally I never really had the desire to socialise and due to a severe social anxiety disorder known as selective mutism I rarely talked outside the family home. I saw some progress in my teens but I didn’t see much dramatic change until my mid 20s. By this time I was already diagnosed with Asperger’s syndrome and ADHD, and I can’t deny that being prescribed Ritalin not only helped me talk more but have the desire to talk to people at all. I finally had the patience and clear headedness to be able to pick up on social behaviour and put it into practice.

Learning new social skills was a matter of listening to two other people sit beside me and have a conversation and to carefully watch their body language; anything from the length of eye contact made to subtle hand movements. I often got some pretty confused looks from the people I was secretly learning from. I didn’t just pick up social skills from people talking to each other or from my own feeble attempts at having a conversation with someone but from watching actors on TV and in film. I’m a longtime fan of children’s films in the 80s and 90s and I’ve always mimicked the words, mannerisms and even dress sense of those young protagonists.

Some TV shows have been central to my social development or just made me understand confusing neurotypical (someone without a neurological disorder) behaviour. That wasn’t something I wanted to mimic but just be aware of because it was so illogical, things like lying and keeping secrets and the eventual confrontation that surfaced after being caught out. It was mostly science fiction shows that taught me the importance of teamwork and how to think about others. Recently, a TV show on Netflix called Granite Flats showed me how to apologize to people. These sound like very simple things to know but I’m not just taught these things by the characters on a show or film, but the way they say these things helps me actually get the words out at all otherwise it’s very difficult for me to say things such as ‘sorry.’ I don’t just mimic actors but become their characters. I actually sound exactly like the characters, anyone from Data on Star Trek to Captain Malcolm Reynolds from Firefly. I rather enjoy sounding like a space cowboy too. But I can also mimic people I know if I look up to them enough.

I’ve come far in the 5 or so years that I’ve been training up my social skills. I’ve also lost them and had to build them up over again which is what happens to autistic adults when they are under extreme stress. I can even lose these skills if I go a long time without talking to anyone. So, it’s important for me to get out there not just for emotional reasons but so I can retain the skills I’ve learned and continue to build them up. There are differences between what an autistic person wants to get out of a conversation verses an NT. An NT, or non-autistic person doesn’t care so much about what words are said but just the time spent with another person, whereas an autistic person really wants to share information and hopes that the other person will learn something new and remember it. That’s not always the case though. In my experience people don’t remember much of what was said at all.

I do enjoy the time I get to spend with people. I’m trying to focus less on the information I give and more on the time spent, especially when building a new relationship with someone. Talking though is still very hard for me to do. I have the usual problems that anyone with social awkwardness or delayed social skills goes through like not knowing what to say at all or worrying about whether the topic is relevant or socially acceptable, and then I have to work out whether what I say will come across as offensive before even saying it. But the actual act of speaking and making thoughts formed in my mind come out of my mouth in the order that I thought them is often a task I fail at. They don’t come out in the right order. I think this is because I think of two ways to say something and combine the two ways together in one sentence. I also get a blank half way through a sentence that I often spend a lot of time quickly trying to remember what I thought of a few seconds ago and grabbing any bunch of words that come to mind and make my best attempt to form a sentence out of them.

However, my friend Patrick seems to be the complete opposite of that. He’s a musician, a bass player that I’ve recently met after years of taking photos of bands he’s been in. I was in awe of his ability to keep a conversation going but staying relevant to the subject. I wanted to emulate that but at the same time it’s my impulsive mouth that makes me say anything at all. Sure, those words can often embarrass me or unknowingly offend others and often make me feel stupid, but it’s my thing. However, I’ve been noticing that I am holding my tongue more in an attempt to stay relevant. Pat though is a really nice guy and despite my social awkwardness which can lead to a lot of impatience by people or have them making fun of me for stumbling, he remains patient and tries to help me get around my little handicap.

Even though I’m still developing my social skills I’ve learned a lot and have a high amount of empathy for an autistic person and even find myself mentally telling non-autistic people to think about how others feel or will respond to the way they’ve said something. It seems these days with social media being such a huge part of people’s lives that they’ve forgotten the very first thing I learned in my social skills training: not everyone will agree with you or have the same interests. Psychologists call it having a poor theory of mind or mind blindness when you fail to understand this. I remember when I struggled to keep thinking of others as separate individuals from me with their own likes, hates and wants, and their own experiences which help shape their personalities.

Still, most people seem to have adequate enough social skills to think they don’t need any further help and still they look at those who struggle socially with impatience. The best thing you can do for someone who is struggling to speak is be patient, not assume you know what they are going to say or finish their sentences for them. We don’t all have the same social ability and the person struggling is often very frustrated at themselves. It’s not uncommon for the more introverted person to hold something against an extrovert who replies before they’ve even finished talking or repeats their words to other people. To them it’s very rude. As for rudeness, sometimes those with poor social skills can say something that might be interpreted as rude but often they’ve just failed to realize it would come across this way. If you keep this in mind and not respond with anger you can probably avoid confrontation and the person will not become depressed over their mistake. Having poor social skills leads to a lot of anxiety and depression and these two disorders really interfere with developing new social skills.

My mood disorder gets in the way of me developing socially. Sometimes I get too hyper and impulsive and slightly delusional to apply what I learned when I was in a more euthymic state, and my depressed and anxious states lead to a lot of self-doubt and negative social scripting, which is thinking of worse possible outcomes in a social situation. Usually though, I use social scripting to help me come up with subjects to use in a conversation and it actually does work.

I still get surprised when I hit a brick wall in my social skills, which happens when people act in ways that I don’t understand or I realize that despite all the years I’ve put into developing new social skills I’m still not able to steer myself out of difficult situations. Usually, my answer to dealing with a heated dispute between me and a friend is to completely get them out of my life. Not everyone is happy with me using this approach but I’m at a loss to know how to work out a solution. So, much work is still left to do if I want to keep my friends. I applaud my friends for trying to keep our relationship intact, I just hope one day I can return the favour.

Videogames and Regression

I’ve categorized regression in autism into 3 severity types. Type 1 happens when an autistic person is under a lot of stress from a significant change in their environment that causes them a lot of distress which makes them regress into an earlier child-like state and they may preoccupy themselves with an activity that makes them feel safe and comfortable, and returns them to a state of order in an otherwise chaotic situation.

Type 2 is what I have dubbed ‘The Second Regression’ in the past which is a more serious and long term form of regression. It’s usually referred to as cognitive regression or a shutdown. Shutdowns in autism have their own terminology and have their own spectrum of severity and it’s something I won’t get into now because it will just deviate from the original point of me writing this post. This Type 2 regression usually happens when an autistic person pushes themselves beyond their own limitations and can result in a loss of developed skills. Since doctors don’t know much about this condition and even go as far to say it’s psychological hysteria they can’t do a lot in terms of treatment. Instead, the autistic person must re-learn all these skills over again. When their family members notice they’re a bit slower in communicating their thoughts, social understanding and basic skills they may have no choice but provide some accommodations for their struggling child, sibling or spouse.

Type 3 usually happens when a baby is 18 to 20 months of age and begins to show symptoms of autism for the first time. They may have already developed speech and hit their milestones on time or early but for reasons not clear to scientists their skills begin to regress.

I’ve gone through Type 2 regression around four times so I’m hesitant to push myself when I begin to feel anxious. I don’t ever want to feel helpless and dependent on others while trying to re-learn lost social and life skills which I’m all always trying to build more of. Recently though I experienced Type 1 regression for maybe only the second time. They may have been more but I feel so socially developed for an autistic person that this little set back really made a huge impact on my self-confidence.

It all started when I found out that my house’s lease was being terminated and my sister whom I was living with at the time had previously been looking for somewhere else to move, which I protested. But then we had no choice. We had to move. It probably took a week for my sister and housemate to agree to move to Katoomba but I resisted. I tried to find someone else to live with on Flatmates.com but after a few weeks of not really finding anything suitable for me and my small cat Lyra (not many places allowed pets) I started to lose confidence that I could move in with strangers at all. Eventually, I came around to the Katoomba idea but I was still anxious about it.

I was working in Western Sydney and I knew I had to stop working there days before moving to Katoomba. I’m also a gamer and around this time Quantum Break, a game I had been waiting years to come out finally did and I become wholly absorbed into the world of Jack Joyce, the main protagonist. I searched through every nook and cranny of that game world to uncover more of the story. It had become my new reality. Yes, time was breaking down and I had these cool time powers and Dominic Monaghan was my brother. There were these moments in the game called stutters and I guess I played the game for so long I started to see them outside of the game. There were TV episodes in between the levels or acts and I felt like I lived through every character in the show and game. When I was half-way through the game I started to take days off work just to play it, even after my flu symptoms started to dissipate. Then it was choosing playing that game instead of seeing Craig Nicholl’s from The Vines play a solo show at Newtown Social Club. I’m a live band photographer and go to quite a lot of gigs and consider myself part of the Australian live music scene so not going was even a shock to me. Craig also has Asperger’s syndrome so he’s probably the only person in the music scene I can relate to. My friend wasn’t impressed that I didn’t go to that gig. In truth I didn’t want to go out and risk getting sick again. I had already missed so many days of work it was impossible to catch up without risking a collapse. I’ve had chronic fatigue since I was 13 and last time I pushed myself I became close to passing out. It happened after I went to shoot a gig, spent two days editing the photos and went straight back to another gig. When things like that happen to me I become anxious about it ever happening again.

Another reason I was hesitant to go to gigs might have had something to do with feeling anxious and even suicidal at previous gigs I went to alone. The feelings lasted as long as I was alone and didn’t talk to the band members if I didn’t know them. Fortunately, at those gigs I did know some band members. These feelings were new and unusual and they may have also had something to do with my stress over moving.

When I was close to finishing Quantum Break a free Destiny update came out so I gave the game another chance and I enjoyed it a lot more. I was one of those year 1 players who got sick of it and vowed never to play again, but the loot and upgrading points were very rewarding so I stayed. I entered into a new reality, a futuristic dystopian world in which I and other players were the last hope of humanity’s survival.  I became my Titan subclass throwing fiery hammers, ground pounding groups of enemies into oblivion or helping my team mates out by erecting a void shield. I dominated the Crucible (multiplayer) for a short while employing underhanded tactics to defeat my enemies. I played for full days to slowly upgrade my light level so I could play the final challenge. But it was all cut short when Starfox Zero came out and packed up my Xbox One and set up my Wii U. Three days later I wanted to throw that game and Wii U into the Sun. I also played a bit of Alan Wake: American Nightmare on my Xbox One in between Quantum Break and Destiny or whenever I couldn’t connect to Xbox Live.

Next was Ratchet and Clank I think so I set up my PS4 and packed up my Xbox One. Around this time I was beginning to suspect that I had grown some sort of a psychological dependence on playing videogames. I would never buy so many games in a matter of weeks. Usually, I would play a videogame to distract myself from depressed and suicidal thoughts. So, it was a form of therapy for me. I discovered this when I was anxious about going to a gig and I found playing Batman: Arkham City calmed me down. Since then, playing videogames works better than any psychiatrist’s advice ever has.

Not only did I have a psychological dependence to play videogames I also stopped hanging out with groups of people. People would come over to the house all the time and there was even a birthday party but I just didn’t care about socialising. It may have just been another way for me to cope with my stress. But in my head I came to the decision that I just didn’t want to do it anymore.

I did want to go to Good Game Live though but I felt nervous about meeting fans of Good Game Pocket show, the ‘Pocketeers.’ I’m not really good at meeting people and becoming friends. I’ve been bullied and trolled by people who were meant to be my friends so I was hesitant to go. When I sort of told one of my friends she made it sound like I wasn’t making an effort. We had a big row, a big big one. She told me I was making excuses even for my PTSD and this is from someone who has a mental illness themselves. Emotionally I couldn’t deal with it and I didn’t know how to handle the situation so I did what I always do when I hit a social brick wall – I tried to get her out of my life but she kept trying. Through my sister I realized she missed me and it was something that never occurred to me. I don’t often miss people. I can spend 6 months without seeing people and as long as I’m preoccupied with an interest it’s enough for me. I did try to make an effort to hang out though. I was going to go to a gig in her town and asked to stay the night but I was never really given an answer. I deliberately didn’t go to two gigs I knew she’d be at. Although, I had no real motivation to go. This was You Am I and Davey Lane – they were usually unmissable gigs but I just kept playing Ratchet and Clank and Modern Combat 5.

It took about a week but things are good between me and my friend again. I think. I’m not very good at keeping friends.

Then Uncharted 4 was released and yep I bought it day one. Now I was Nathan Drake, a thief/ adventurer in search of pirate treasure. Once again I was completely absorbed into the story and became so accustomed to the combat it began to feel like muscle memory. I would shoot one bad guy, take his gun, grapple to a rope, swing on that rope to another ledge, shoot another bad guy while still swinging in the air, land on him and take his gun and continue the process until the area was cleared of enemies. I felt so athletic while playing it even though I had barely gotten up and gone for a walk. I never wanted to stop playing it. I wanted to stay in that world forever.

I might have spent between 6-10 hours playing it daily and completed it in four days. I’m not the best player but I thoroughly enjoyed my time playing as Nathan Drake. I enjoyed the cinematic driven story so much that when I played DOOM on my Xbox One it felt boring but I eventually got comfortable with it. It was hard to feel like I was in the DOOM world so I tried to read up as much of the lore as I could but the days til I moved were getting shorter and I had to stop playing DOOM and pack my Xbox One into a moving box. I also really wanted to see Dallas Crane and I felt I had to completely put away my game console so I could be sure I could go to that show. I put N.O.V.A 3 on my phone and played it before the show. The A.I that was supposed to help me was buggy AF though so I eventually gave up on it. But I am glad I went to the Dallas Crane gig. I got to hang out with the guys, talk mostly about videogames with the drummer Steve and take some good photos despite having no confidence of my skills after months off photographing bands. I even forgot the differences between fast and slow shutter speeds.

Then I was going to go see Olympia two or three days later, so I hastily edited the Dallas Crane photos, ignored the support act photos and was off to another gig. Then some more symptoms showed up. I completely lost my appetite yet still felt hungry; I just didn’t want to eat. The kitchen was a mess because of the move so that may have been one reason why I couldn’t eat.  I ended up surviving on Shapes and crackers. My sister was convinced that Olympia went to our church when we were kids. I didn’t really believe her.

The night of the Olympia gig I had some anxiety about getting in at all because my sister had my ticket but it passed and I met up with my sister (not the one I lived with) and we got together to excitedly talk about a house that we were approved to rent. I ate a meal for the first time in days and I was looking forward to seeing my friend Pat at the gig who plays bass in Olympia.

I was distracted and unfocused at the gig. Maybe it was because I kept talking to my sister when I’d usually be alone and hyperfocused on what was happening on stage. I yet again had zero confidence in my ability to take photos but I eventually remembered what a slow shutter speed does to photos taken in low light, so I corrected that. It was a good night. I got to talk to Pat and meet Olympia and my sister asked her if she was the same person that went to our church as kids, and she was and it was kind of strange but nice. I was an extremely quiet and weird child and I’m so different now that it felt good that someone knew me back then. It’s like that child actually did exist. I didn’t really have much to talk about because I had been playing videogames obsessively for the past month and being around a 35 to 40 something year old crowd I didn’t want to make myself seem any younger by mentioning that.

So, despite all the stress and weird regressive symptoms and anxiety about everything and near starvation I still had a good time and took some great photos and just got to do what I had been missing out on for months. It was enough for me to want to do it again. A couple of weeks ago I had feelings of giving up on my photography because I just couldn’t get out to the shows, and also those suicidal feelings. Every now and then I think about giving up on my band photography anyway.

I hastily edited my photos of Olympia too because I planned on seeing The Matches that night. The Matches were amazing and energetic as usual but I didn’t feel like I belonged in that scene anymore. And that was once my scene. There was a time when everyone knew about my photography and at least two people at that gig knew me. I met the guitarist of The Matches but it didn’t go as great as it did at Olympia.

I’m in my new house now and I haven’t played a video game for about two weeks, maybe more. I’ve been watching a whole lot of Good Game Pocket and following gaming news. I’m waiting for a gaming monitor to be delivered and DOOM is sitting on a desk of dresser drawers in the lounge room waiting to be finished. I don’t think I’ll become dependent on videogames again, not to the extent I was. I think it all had to do with the stress I was feeling over moving. Sure, I’m going to be picking up a controller when I feel deeply depressed or even anxious but I don’t think I’ll choose it over going to a gig. I’ve been trying to work on my social skills – AGAIN! Sorry, but this is like the fifth time. I pretty much know what to say to people but don’t say it. It’s going to take time and practice but it will happen. The nervous impulsive speaker will return.

I still enjoyed my time playing videogames. I felt like a gamer for the first time. I’m not saying they’re as broken as I was. No, they seem to be able to balance playing games with work and socialising in a way that I never could. I’ll still continue to play games but I won’t have much money to buy them day one or pre-order collector editions ever again. They’re still the best therapy I can ever get and the only way I can make friends, outside of the music scene of course.

Autism and the Videogame Community

April is Autism Awareness Month and if I’m lucky today is the 2nd of April: Autism Awareness Day. I’m taking this time to not just write one but a couple of posts dealing with issues faced by those with autism, instead of my usual spotlight on myself and talking about what autism is like for me. It’s my 8th Autism Awareness Month so talking about that stuff does get tiresome. The first post will be about autistic people in the videogame community and the second about the state of the autism community and its many divisions within that community.

Recently I made the decision to quit playing in multiplayer worlds such as MMOs and spending a long time in game forums. I felt like it wasn’t a very supportive environment and not an ideal place for someone still learning social skills and dealing with serious mental health problems. I was let down by the fact that the game community and most social online communities are not really about making friends and supporting each other. I’m not saying it should change. I would love it to change but I’m not pushing anything here. It’s just not for me and I don’t think it’s for people with similar issues.

That said, I’m still going to play the DOOM beta later and if I run into the same obstacles I will try my best to get through it. Obstacles, you say? Yes, these obstacles are often the mindset other gamers have when they are looking to team up with another person. They expect you to already know what to do and be just as good as they are. If not they will accuse you of not trying hard enough, even being lazy. They just don’t see that two people may not be alike. It’s actually very autistic. OK, I deserve the abuse I’ll get from saying that. But it’s very true. I had to learn all throughout my early adult life to remember to think of others and even had to pick up in other people how to empathise. So, it’s something I’m always trying to keep in mind, yet others seem to be losing this innate ability.

I don’t play as much as other people. I have many other interests, all of which will individually take my complete focus for weeks and months on end. I can’t really commit to two at a time. At the moment I seem to be trying to juggle writing with my band photography with playing video games with reading comic books so I’m not putting much time on any one thing at all, so I haven’t got that intense attention to detail autistic people are famous for. I expect some abuse thrown at me from playing DOOM because I haven’t played anything like DOOM for years. I’m off my game, as they say.

What I’m really trying to encourage here in my speedy jumpy-brain ADHD writing style is that I wish gamers would open their minds up to the fact that not everyone who is playing with or against them is exactly like them. You never know what kind of stress someone is under or what their challenges are. Most of you don’t care but I believe there’s a minority of people who will still give consideration to a minority of people once they’re made aware of it.

The reason I play video games at all has a lot to do with my poor performance playing platform games on SEGA, PC and Nintendo as a kid and proving to myself that I’ve gotten better since. I have. I use my brain much more now than when I was a kid. The second reason is because back when I wasn’t even playing games but was sorta interested in them thanks to the invention of mobile gaming that I started to research game development to help me write about VR technology in a science fiction novel I was writing. Funny thing was I didn’t actually know another company was creating the same type of technology under the label VR Roaming. Anyway, tangent. Point is my research turned into playing the games and living in the communities and then I got so absorbed into the playing side of the research, I became a gamer myself. Then when I was going through a lot of anxiety over going to see live bands cause of a PTSD issue I found that playing Batman: Arkham City calmed these nerves and maybe beating the hell out of bad guys felt kind of empowering. So, when I was struggling to deal with crippling depression and suicidal thoughts (oops, trigger warning) I would make myself play a game at the very beginning of my depression and the feelings would be alleviated and I wouldn’t go on online rants and lose all my friends in the process.

Now the fact that I was in these mental states while gaming meant any slight abuse hurled at me was deeply felt as my mind wasn’t even seeing the world properly – both depression and anxiety put thoughts in your mind that often do not reflect your current situation, but are both paranoid and delusional, in a mild non-psychosis sense. You’re self-critical, sometimes hating everything about you and losing hope about your future. You start to hate everyone and everything around you too. What were once little annoyances are now the most irritating things in the world. And you believe them, you always believe them. It doesn’t matter how many times you try and put positive thoughts in place of them, they will always sneak their way back in. At least for a little while. Dealing with toxic people in the gaming community just becomes more of a burden when in that state of mind.

Now back to autism. I believe it’s tough being an autistic gamer because our symptoms may lead to playing badly, though sometimes an autistic gamer that has gaming as a special interest can have the upper hand. The old term used by psychologists was ‘little professor’ – it was the fact that a child with Asperger’s or high functioning autism (they’re basically the same thing) could become interested in something and soak that knowledge, mostly facts, up like a sponge and when they talked about it they sounded like an expert in the field. People with autism can teach themselves to do anything this way. I used to read a lot about physics, especially astronomy and spit out facts I memorised here and there and people thought I was a genius. I understood what I was saying but I’m far from a genius. We have a high attention to detail so can pick up on things people may miss. Try to pick up an object with a lot of detail with it and try to pick off every little detail on it. This is what we do naturally. It’s actually a good coping mechanism. When we look at the whole picture (environment) we’re easily overwhelmed. Most of us have extremely sensitive senses (take note Bungie) and need to detach from the world and just focus on one thing. As a result we memorise all the details. I’m just saying, a player like that on your team could be an asset.

We’re also very good problem solvers. Despite thinking mostly linearly, like it says in the diagnostic criteria, some of us can think of unconventional ways to solve a problem. A big problem I have with video games is that there’s usually just one way to play the game. I was once doing a raid in Destiny playing the Dark Below DLC. You have to take down a Hive Prince called Crota. We all pretty much knew the drill. All six of us have to touch a stone, then you gotta fight the Hive minions and there’s just a very set way to go on from there. But there was this one time where Bungie servers were being little buttholes and glitching the whole raid up, so we were impatient to finish the game so we broke protocol. It was only a slight deviation from the plan but we defeated Crota a lot faster than we usually would. So, maybe having a less than conventional member on the team could not only make a boring rinse and repeat raid more interesting but may lead to quicker victories. And I just think if there were at least 3 or 4 possible ways to complete a level then it would make for much more exciting game play. I really like emergent game play where you take over some dialogue decisions and it affects the outcome of the game. Developers need to make the way players actually get around the environment and the decisions they make within be as varied as the many choices of dialogue in story driven game play.

Autistic people may be able to learn a lot of information quickly and rehash that knowledge as though they’ve been into that subject for ten years when really it’s been two days, they may see other things people miss and they may want to shake up the linear way in which you play games, but there are also some cons. One of the most noticeable shortcomings about someone with autism is their poorly developed social skills. I’m here to elaborate on that. When talking to someone with autism it’s best to talk in a fairly straight forward manner and leave the phrases and idioms at home. They also cannot process too much information at once so it needs to be done in step by step intervals. For me, I don’t like too much banter while in a raid. I need to be able to focus on the mission at hand and really focus on the team leader’s directions. I simply cannot hear two different types of dialogue at once. I always have to pause a TV show when someone comes into the room talking. I can no longer follow what’s going on TV. I feel so frustrated I feel like throwing the remote at the people talking, but I know they don’t understand why I can’t hear the TV. They can filter out unwanted noise and focus on one thing. I and most people with autism, can’t. And always remember, people with autism cannot deal with change. A very helpful and awesome person will help them slowly transition to change by revealing that something different is going to happen and a most unhelpful person will just drop that information 2 seconds before it happens. The difference is a calm and contended person eager to do some team death match or a very angry person who is going to rage quit anyway, and blame you for it. Might rant on Facebook about it. Maybe.

One thing to keep in mind is people with autism just want to be understood but still be treated like everyone else. We don’t want pity. We’ve been handled with kid gloves for most of our lives and to be treated that way in your teens or adulthood is degrading and patronising. There has to be a balance between not being an ableist coont and not treating us like we’re in damn kindergarten.

I think one of the big problems facing people with autism and is probably the reason why they remain unicorns to me (hard to find in the gaming community) is because of the fact that autism is used as an insult throughout the gaming community and social media as a whole. Now, I’m not going to tell those people to stop. I know how much gamers hate having to change something about themselves to seem less offensive. I just don’t think autism should be used as an insult. For one, there’s nothing in the diagnostic criteria that says people with autism have an intellectual disability. Anyone who would make fun of someone with an intellectual disability have voided their humanity and are not subject to the same rights as declared in the United Nations Declaration on Human Rights in my book anyway. They’re monsters and not worthy of a second thought. Hmm. I may be compartmentalising here..eh. People with autism are not mentally handicapped; it just co-exists in those with severe autism. In the psychological world we call that co-morbid. Like my ADHD. The symptoms of autism are to me personally a set of behaviors developed within the brain as its own way to cope with the chaotic world that the differently connected neural circuits within the autistic brain cannot cope with. But go ahead and think of autistic people as all retarded. It just shows how little you really know about the condition. It’s probably one of the very few mental disorders that give special skills within the frustrating life experience limiting symptoms too.

There are other autistic gamers out there who face the same issues as I do in the online community. I can’t be the only one. I wish to find them and give us a safe place to exist in the game community. If you’re on Xbox One send REDMENACE85 a message. If you’re a troll you will be ignored, reported to Microsoft and name and shamed by the international autism community. If I ever get back into Destiny I’ll make a clan just for us.

Nightmares Coming True: Fear of Change in Autism

I’ll explain that title later.

Change. It’s a simply thing really. Something we all have to go through. We face it so many times every day that we barely have to think about it. It just happens. But for some people it’s a constant torture on the mind. If you have a basic concept on autism you know people with it are very rigid thinking, keep to a very strict routine that if broken may have them wailing like a banshee, or in high functioning people, makes them react loudly and violently in tears or in threats or their body and mind just shuts down. And that was just when Syfy changed the time and day they showed Stargate SG-1.

Change is very serious concern for those with autism and indeed this person with autism. By now I could consider myself completely overcoming autism if it wasn’t for the fact that I can be paralyzed in fear by sudden change. I know how to have conversations with people. I can do small talk. I don’t always make eye contact and I can still interpret things in very literal ways and have an incredibly logical mind.

Now to explain that title. Change does feel like a nightmare coming true. For those scared of change it’s always on their mind; it has to be because it feels worse when they didn’t prepare for it. So, they learn to always plan in advance for any surprises. In this way emotional reactions can be controlled because they play out scenarios in their head and in the comfort of their sanctuaries (their house, somewhere they feel safe) they can work out the best way to react to a new situation.

Recently, I’ve had to deal with change mostly by force. I had to start work in Western Sydney. My disability job operator met up with me at a train station and took me to the facility. The next day I did it all by myself. It was scary but I adapted and now I think Western Sydney is better than my own area. It’s quieter at least.

After I was able to do this by myself I thought I should be able to go further. So, I’m planning a trip to Melbourne to see my favourite band Dallas Crane. I’ve got AAA passes for me and my sister so I know I’ll at least be able to go to the show if tickets sellout. But I’m still trembling inside. I hate airports because I’ve never been to one before. By now I know everything that I should expect to happen there because I’ve been preparing for it for years but I haven’t stepped foot in one yet.

A few years back my family went to Portland and I didn’t go because a few days before the flight I didn’t want to go, even purposely kept myself sick so I wouldn’t have to go. Most people blame my mum because she actually asked me if I would be able to cope, but the thing is my sister in Portland really had to go to every effort to make me feel ok about going in the first place, and anxiety creeps up on you. Even when you put a show of strength it’s always there and the smallest thing can trigger it. So, I don’t blame my mum. I thank my mum for being the only one who understood what I was going through. I wasn’t ready to fly to Portland. I didn’t want to anyway. Another thing people need to learn is autistic people aren’t usually interested in the same things as other people and they can’t feign it at all. At the time I didn’t like weddings. I didn’t like the fake sentiments that people would show at them. And BBC’s Sherlock agrees with me.

The second time I was meant to catch a plane was to see another favourite band of mine, The Ape. I was all excited until my sister told me all about going to the airport and catching the plane in an attempt to calm my nervous. It didn’t work. I felt so anxious that I could even hold my head up and then I went to lie down on the couch and shook for a little while. Then I couldn’t even get free tickets to the show and it was over.

This time I’m not exactly anxious about the airport or the flight, yet. I am anxious about plane tickets being bought. I’m anxious about having to go on my own. I’m anxious about not being able to go and letting the band down. I’m anxious about letting myself down. I could easily ditch the whole idea and feel better again, but I would feel like a failure. I would still have not overcome this obstacle. For many years I’ve been building up on my social and what is called life skills. This is the next step and I know there are people who do this all the time. But they’re not autistic. And for those who are either get or have had help to get them to that point. It’s bad enough I’m beating myself up for letting myself and other people down that I don’t have to feel depressed over the fact that this is such a simple thing for someone to do.

So change sucks. In fact, lately my eating routine has been completely thrown out of whack that I’ve lost my appetite but still have hypoglycemic crashes. When I’m hungry I feel sick but don’t even feel like eating. That’s something else I have to deal with on top of this. My head is in such a mess that I don’t even know how I can begin to start organizing it again.

My last panic attack was when I had to go back to the location where I was almost mugged which began my 4 year PTSD. It’s not as bad today, well, I thought it wasn’t til I went back. I started to panic, feel restless and agitated and wiped away my tears in the rain. So close to home but so far away. And I did beat myself up about being unable to do something so simple. But then a voice in my head reminded me I have PTSD. It’s why labels are so important to me. I feel like less of a failed adult because of all these diagnosis’s I have. For example my ADHD usually makes me feel stupid. I can barely remember anything. I can barely focus on anything. Sometimes something ignorant slips out of my mouth. Lately I’ve been beating myself up about my mood disorder. Bipolar maybe. I don’t know. Doctors don’t care enough to do the assessment. So I can’t get the meds. I don’t even want the meds. Medication is nasty stuff. I learned my lesson after taking Ritalin.

I suppose when I meet a new person that I really like I don’t want them to know about all my problems but I know in time they will eventually be seen. I guess that’s what I’m just concerned about. And the whole change thing. And the fact that I don’t even know when and how much to eat.

And now I’m depressed. Again.