beyond advocacy - end of an era
Update: I resumed editing this blog post on 17 May 2023. Adding some extra information, links etc. I'd gone off on a tangent winding up my blog on Bipolar Courage, which I intend to leave up as a resource. It's kind of how I write books, out of order but books are way more complex as I tell stories, not just like a series of minimally edited essays or blog posts. I also spend way longer on my books than blog posts, trying to reorganise the content to flow better for the reader.
It's evening of 30 April 2023. A whole lot has happened this week, month, year.
A week before there was a huge announcement about some major policy changes affecting an enormous number of people, I made a decision to discontinue my advocacy as Bipolar Courage. I have been burnt out with it for a long time and it just got to the point where it was too exhausting to try speak on camera for the vlog on YouTube. I recorded over 1,000 videos and intend to leave them up as a resource (even though sometimes I've been tempted to private or delete some of them).
The catalyst for the change was in part an online friend encouraging me to make a LinkedIn profile. I was hesitant as I felt like that was a place where people boast about their careers and as a disabled woman, I don't have any groundbreaking careers, even though I have some pretty unusual accomplishments.
I decided it was time. To move from blogging and vlogging as Bipolar Courage to blog on Soar Purpose occasionally. Plus work on my books etc. I actually purchased the domain name for Soar Purpose back in 2019. I can be a visionary thinker but it takes me a while to do things. My advocacy work was under the banner of Bipolar Courage in recent years. I am proud to say that I did not accept even 1 cent in donations for my advocacy (my personal belief is that unaccountable money for 'advocacy' and activism results in corruption).
It's now the evening of 1 May 2023.
I was too fatigued yesterday to complete this blog post and after work and a rest, I will try.
I've done a lot of processing in April and May. It's been quite stressful to shift gears to wind up the advocacy journey to move on without it. I haven't even had time yet to update this website with my vision.
I no longer want to be defined by my diagnoses, even though they still affect my life. I don't intend to harp on about them as Soar Purpose but I have had a lot of psychiatric diagnoses over the years. Primary diagnoses are bipolar disorder (type 1) and post-traumatic stress disorder (PTSD). Also noted by the last psychiatrist who assessed me to have clinically significant autism spectrum features, fitting pervasive developmental disorder, not otherwise specified (PDD-NOS). Which is still a current diagnosis in New Zealand.
Also diagnosed with social anxiety disorder (currently mild). Historical diagnoses include major depressive disorder and generalised anxiety disorder and fibromyalgia.
I had my first breakdown in 1993 when I was 20 years old, which is three decades ago now. It was a long and frustrating journey to being correctly diagnosed and treated (medications and therapy). I had a another major breakdown in 2015, resulting in admission to a psychiatrisc unit.
Clinicians say I have impairment from a mental injury of PTSD (in some cases, it doesn't completely resolve with therapy, although I have had an improvement). I have been in therapy for over 4 years for PTSD, which was initially a severe presentation (now more moderate impairment).
I am mentioning this stuff in this blog post as don't intend to keep mentioning, as I have talked at length about how I am affected and how I manage these on Bipolar Courage, mainly on YouTube. Please excuse me if I repeat myself, and go off on tangents, as I have significant cognitive impairments with my disabilities. I usually leave blog posts minimally edited.
I have been an advocate online, in some way or another, since 2008, which was when I won a major prize in an Australasian writing competition about mental health. There was still a lot of stigma at that time, much more than now. I thought the essay was destroyed forever (I have a habit of destroying most of what I have created) but I found a copy and typed it out on a blog post. That essay was the first time, I admitted publicly, that I suffered from mental health issues (stigma was worse, 30 years ago when I had my first breakdown).
My advocacy has all been to help vulnerable people, as a vulnerable person. I did not accept donations or other payments. I am actually opposed to it, as I have seen so much corruption when unaccounted money is involved with advocacy.
Volunteering was something I felt I needed to do and is something I feel like I am moving on from now.
I found my voice initially with blogging, as Xanthe Wyse (pronounced "Zan-thee Wise"). I blogged prolifically since 2008 and won several blogging accocades. Since then, cognitive impairment with my disabilities has become worse, so it's extremely challenging for me to write and speak.
I deleted earlier blogs - hundreds of hours of work, under my pen name Xanthe Wyse, which later became my legal name. The blogs were actually deleted because of pressure from family, after I legally changed my name, even though changing my name actually gives me more distance from them. I try to avoid writing or speaking about family, regardless.
It's quite challenging for me as my autism spectrum features include being honest to a fault, lack of a filter and revealing too much personal information that has ended up getting me into trouble.
I first attemped vlogging in 2017 and then regularly since 2019. I made a decision in April 2023 that I was done with vlogging and speaking in front of a camera.
It's pretty exhausting for me to speak, considering that I was mute in childhood and am sometimes also as an adult. I will for now leave up my blog and vlog at Bipolar Courage. Over 1,000 raw, improvised videos.
My advocacy has been mainly about mental health and processing trauma. Even though I have been seeing a clinical psychologist for the past 4 years (and am still seeing her), I still did a lot of processing myself in creative ways. I am actually passionate about creative expression being therapeutic.
A little of my advocacy was about aspects of autism spectrum. My son was diagnosed Asperger's Syndrome in childhood, back in 2010. I think it's important to keep family members private. He said it's okay if I mention aspects as long as he stays anonymous. I don't mention the more embarassing things.
Some of my advocacy was about an immigration issue. Despite loathing politics, I founded an awareness campaign that became a peak body advocating for the fair treatment of New Zealand citizens in Australia.
I chose the name, Oz Kiwi, founded the Facebook page (now over 50,000 likes and incidently I am now blocked from), built the first website from skills I'd taught myself online. I used a simple kiwi on a road sign as the first logo. I invited collaboration, as at the time, I didn't know a lot about the topic, other than I felt vulnerable after finding out that I was on an unprotected Visa. Also that an estimated few hundred thousand others were in the same boat.
I didn't get Australian citizenship, despite living in Australia for 8 years, returning because of a mental health crisis. I didn't stay with Oz Kiwi for long, as it grew very fast and I didn't have the energy to deal with loads of other people, all wanting their way. I don't like working with groups.
Collaboration can be powerful, and it was the key to Oz Kiwi's success and influence. It was nearly it's failure too, as some egos were wanting to be in the limelight, which nearly destroyed credibility. I was very much behind-the-scenes, so it was easy for others to take the credit. Only a handful of people know who really founded Oz Kiwi and I have screenshots from public records on social media where my friends and my enemies acknowledge this.
After 10 years, I was finally acknowledged by someone who was involved with Oz Kiwi early on. Also, recently, I was privately acknowledged by someone whose actions saved Oz Kiwi after it was nearly destroyed just after I stepped away. He has similar disabilities to me and I reassured him that he did nothing wrong. Both he and I copped a tonne of abuse. There were even fake allegations that he and I were the same person and had run off with loads of money.
Perhaps one day, when the dust has completely settled, I might write about the drama that happened, although I think I will distance myself from even using the name, Oz Kiwi (now trademarked to someone else).
It was quite surreal that official leaders from Australian and New Zealand recognised Oz Kiwi for achieving one of the biggest reforms of this generation. I am still amused that I founded something political that involved teamwork, as neither are what I like to do. At primary school, I wouldn't even speak in front of the class or take part in group work. I didn't even say a word at school or go outside to play for an entire month.
I decided not to list all my former employers on LinkedIn. Not even sure if I'll use it much. I used to do routine laboratory work. Tried a short stint of high school science and chemistry teaching (couldn't handle the stress, but I was known for being creative). Had a short-lived job doing accounts (boring). After my son was born, I worked part-time doing a variety of things including piano teaching, merchandising and an assistant for a publishing company. An employment consultant said my varied work history was a 'dog's breakfast' and refused to deal with me.
So, I started a pet sitting business from scratch, won a business award for it and got a letter of congratulations from the city mayor. I burnt out with pet sitting 3 years later and sold it for practically nothing to an employee and then I had another breakdown. This was when I was formally diagnosed with bipolar disorder, in 2015 and I returned to New Zealand, as I had no way of supporting myself in Australia when also affected by severe PTSD.
I have significant impairment from my disabilities and am unable to work fulltime. I work a few hours per week in a flexible, low-stress job.
I would have stints of being interested in painting and being more enthusiastic about writing over the years. I am unable to be productive at commercially viable levels in either, so it's more a passionate hobby for me.
My cognition was severely impacted by my disabilities. I was very vulnerable and couldn't even follow instructions on how to take my medications or to do something basic like cook a scrambled egg. Couldn't work or drive at all for several months (now I can a little, most days).
Before the breakdown, I had decided on the title of a book 'Pet Purpose'. It was originally going to be about my bond with pets. Then, I had more setbacks from trauma and mental health struggles.
Focusing on a 'ridiculous' goal of writing a book, with severely impaired cognition, kept me alive, with all the struggles with rapid-cycling, mood crashes etc. I'd actually written a draft for a memoir leading up to the breakdown. I published it under a pen name and then later published it as Bipolar Cringe. I left it minimally edited, so it was capturing the state of mind I was in, with no filter. It was about the final year of my marriage, an 'open marriage' (that was somewhat a disaster). Both myself and this book was attacked by cyberbully activists, mainly because I choose to no longer call myself autistic.
I thought about Pet Purpose all day and night. Often, though, I didn't have the cognitive capacity, to order words into sentences and paragraphs. So I painted instead. Most my paintings and other process artworks were making sense of what was in my head, in visual form. Like loose, messy, visual mindmaps. I didn't have to find the words, to communicate what the main themes were, with some very unusual artworks.
Eventually, in 2021, I self-published Pet Purpose: Your Unspoken Voice. A project that took 7 years from conception to publication. I researched and did all the steps myself, including writing, editing, proof-reading (a friend also helped proof-read), formatting, cover art, cover design. It's my most challenging, complex and intense piece of writing. Semiautobiographical, some parts fiction (for disguise, efficiency, creativity) and some parts memoir. Writing out of order, then pieced together into a timeline and then rewritten until it flowed.
While working towards my bigger goal of completing Pet Purpose, I went off on some creative tangents, which were also still moving overall in the same direction. I did two solo art as therapy exhibitions. They were very stressful but part of personal growth and supported by the community.
Bipolar Courage (the advocacy journey) was also going off on a tangent. I have been writing for this past year, a memoir called Bipolar Courage, which is about some of the behind-the-scenes drama during the advocacy journey. I currently like to write books about relationship drama and my vision is four linked books in total, which have themes of disability and relationships. Bipolar Courage is mainly focussed on an intense connection with an autistic man with depression.
Fighting powerful systems
The change brought about with the Australian government was a collaborative effort by who knows how many people in all - probably hundreds. With thousands of allies.
I fought a battle alone against an Accident Compensation Corporation, ACC, decision to decline lump sum compensation for my mental injury of PTSD. They paid for my therapy but did everything they could do deny the piddly payout (as it would set a precedent). I did an information request and confirmed that they spent more on psychiatrists and solicitors all the way to court, than to pay out the compensation (which is not very generous in New Zealand). I blogged and vlogged about it on Bipolar Courage.
They used silly reasons against me, such that I wrote a book and I paint. That I did a degree (leaving out context of two medical withdrawals and taking two years longer than my peers after a breakdown). They tried to use autism spectrum features against me but in the end, used bipolar disorder against me, as it's not covered as an 'injury'.
I am legally eligible to be reassessed, so I my application has been submitted. Hopefully it will be over and done with this year. It's a massive abuse of power and taking on ACC was one of the most challenging things I have ever done.
I now have therapy for PTSD fortnightly, rather than weekly. At my last therapy session, nearly two weeks ago, I said I wanted to look foward with Soar Purpose and leave the advocacy behind. Soar Purpose is actually the title of the sequel novel to Pet Purpose but it may take years for me to complete it.
I have processed a lot and it's taken a lot of my energy. I've said most of what I want to say under the banner of Bipolar Courage. I don't want to be pigeon-holed by bipolar anymore. Although my painting, Kereru Phoenix, proposed cover for Soar Purpose, a metaphorical self-portrait, is a type of pigeon. A kereru is also known a New Zealand wood pigeon, colourful and larger than common pigeons. I see them when I go for a walk in some of my favourite places.
My psychologist said it's great that I am looking forward. Sometimes, I can. I can be visionary, such as the possibilities with Oz Kiwi, even though it was handed over to others to continue.
Also visionary with my book titles. I hadn't decided what I was going to write about when I decided on the title Bipolar Cringe, thinking that perhaps there would be a Bipolar Courage. It wasn't even clear to me what exactly I would write about, until some key events happened. Creative improvisation is what I excel at.
I want to reconfigure this website and blog to fit my vision then get back to finishing my memoir, Bipolar Courage. I still have a lot of work to do on it, even though every chapter has the essential foundation. I'm at the stage where I'm deciding that stays and what goes. I write way more than needed (which involves processing), back it up incase I ever want to revert to a previous version, then do massive changes, including a big cull. I have never reverted back to a previous version.
My writing is like my paintings, complex interlinking layers. In Bipolar Courage, I want to communicate the connection then at times clashes of two complex minds. I want to make it way more polished and show off my story-telling skills (quite different to my still very raw and slightly disorganised blog posts).
My creative projects breathe life into me. I have spurts of energy, which I try to direct into a creative project. It still takes me a long time to do things. The public advocacy had to go, as it was sapping my energy. The toxicity associated with advocacy from the online drama was having a negative toll on my mental health. My psychologist agrees this is a great decision for me, to move on. All of the involvement with the mental health crisis team the past few years, has been from cyberbullying. Taking myself out of advocacy and the drama associated with that will hopefully leave all that crap behind.
I am aiming to self-publish Bipolar Courage this year. I chose self-publishing from the start, over trying to be considered for traditional publishing, as I didn't want for my voice to be altered. Also, I didn't want the stress of deadlines. It's done when I say it's done. Also, having worked for a publishing company previously, I know the process is slow and expensive, to go traditional.
I am imagining Soar Purpose will be a collection of my creative expression - amateur nature photography, painting, writing. I have some ideas where things may possibly lead but my vision is it's my hub of creativity that I wish to share with the world. So far, all my photos and videos have been from behind the camera, where I prefer to be.
I was fatigued tonight but I managed to complete and publish this blog post. I will update with links and pics later.
[17 May 2023 update: managed to add some links and a bit more, with very little culled, still very raw. I recently prepared a free 10-page resource about bipolar mania perspectives, to finish off my advocacy journey.
I also recently improvised a painting, Supersonic, which I have posted some videos of painting it on Soar Purpose on YouTube.]. I intend to put the painting above my desk, to remind me not to get caught up in advocacy drama (which is neverending). Moving forward, without advocacy, for what is better for my mental health and wellbeing.
Supersonic: flying away from advocacy faster than the speed of sound. With a sonic boom on the way out.
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