Reflections of madness past

A few things got me thinking this week. The first one was on Saturday, which happened to be my birthday. I had just done my shopping and noticed a man standing in an archway smoking a cigarette. He seemed interested in me. Like women everywhere I started to tense up. ‘Hello Jeanette!’ the man said happily. I was momentarily thrown and must have displayed my puzzlement on my face. “It’s me, Simon from the mental health crisis team!”. My face blindness is pretty severe and all male mental health workers seem to look similar so I hand;y recognised him, but when I knew who he was I knew he was a very caring man. We got talking. He congratulated me on my recent receipt of the ACT Volunteer of the Year award. We parted, both of us smiling. The next thing which got me thinking was yesterday. A friend in the US said she didn’t know what my co-morbids were, except for ‘mild schizophrenia’. Once again, I was a little thrown.  I’ve never found my illness to be a mild charter. She is angry and destructive and dangerous, it’s just she doesn’t show up that much these days. The final encounter – and the reason I am writing this blog – was another chance encounter with a mental health worker. I was in a seemingly endless supermarket queue, regretting doing shopping after work, and a man greeted me. ‘Where do I now you from?’ I asked. He leaned in closer and informed me in a whisper that he was one of the workers form a residential mental health service I was living in a few years ago. “ah!’ I said, relieved ‘You are the New Zealand fellow.I don’t remember your name’. We chatted a bit, he said he had seen me in the paper and we parted.

So I think this must be a week to be reflective about mental illness.

When a person is inside their own head, they tend to assume others know their history and experiences. This thought resonated with me today as I realised how my success with writing and public speaking and things only really began in 2013. I have only been the public profile, Neurodiversity-promoting, rainbow wig-wearing, social media demon, mentoring, published way too much, role model-y, unlikely, impossible doyenne of Whimsy Manor for less then three years. Most of the people who know me now did not know me in 2013. In fact most of my friends now did not know me before 2013. Probably 99 per cent of people who have come across my memes, blogs and books did  not know I existed before 2013. I am called all sorts of rather superlative epithets these days but I certainly wasn;t in the past. A tiny proportion of people who know me now knew me when struggled most with my mental illness.

My last significant period of illness lasted from 2010 to mid-2013. As I was coming out of that period, I wrote my employment book, one of the events – along with my talk for TEDx Canberra – which triggered the recent expansion of my world. Between 2010 and 2013 I was in psychiatric hospital so many times I lost count. I took almost one whole year off work in a 3 year period. I moved to a residential mental health unit three times for stays of around three months each time. My 37th birthday was spent in hospital. I was convinced that because of the multiples of the number six and their association with Satan I would die before my 37th birthday. When the day of my 37th birthday passed I was delighted and very surprised because I hadn’t died.

If you are a dedicated reader of my blogs ad other writing you will know I live in magical if cosy residence called Whimsy Manor which is the house version of me – bright, loud and friendly. It took me years to make my Whimsy Manor out of the desolation my house was when I was unwell. My episode of illness in 2010-2013 was sparked by anxiety – apparently a frequent precursor to psychosis. And that anxiety was around my apartment, I had a leak in the kitchen followed by a leaking shower. This was very soon after I bought the place and I’d spent all my savings on the deposit. When I had to replace my shower for the princely sum of $3000, I didn’t have the obey and had to use my credit card to pay. Given that I spent many years homeless, the impact on my sense of security in my first property I owned and had held high hopes for was devastating.  The installation of my new shower was a comedy of errors between tradies who all blamed each other for their stuff ups. My anxiety went sky high. I got so anxious I thought my house would fall down. I would lie in bed expecting the walls to cave in. The illness started from there. I had chosen not to see a psychiatrist when I moved to Canberra and got my antipsychotic medication form my GP who thought  it was for depression. When I started to get really unwell it didn’t even occur to me to ask for help – I am an independent Jeanette after all. I hated my apartment and regretted buying  it. I wished I could live at work and even considered doing so.

By the time I finally got help it was because my mum had come to assist me – she was the person I finally told how horrible life was. When my mum arrived I had an infestation of pantry moths and was overwhelmed by that. I thought I had to move but was so stressed even thinking about it that it defeated me still further. My mum cleaned out all the cupboards and hung up peppercorns to discourage moths from returning and bought me a bunch of air tight containers for dry goods. I would not use my shiny new shower because I thought it was still leaking so I washed with a face washer and sink full of water. I couldn’t use the washing machine for similar reasons and so hand washed all the clothes. I was somehow managing to drag myself to work although I’m not sure how efficient or effective I was! When my mum arrived she realised I needed more help than my GP and her confusion around my diagnosis could give me. My mum called the mental health crisis team who were perplexed by the atypical nature of my illness and assumed I must be OK if my mum was there. In the end my mum called the police. Two lanky young officers turned up and figured that I wasn’t any kind of threat. Their boss, a middle aged sergeant, then talked to me. I said ‘Are you taking me to jail? I don’t  mind going to jail. I just need to be somewhere else that isn;t here.’ She reassured me that you had to do something wrong to go to jail and instead drove me to the hospital. I finally got the kind of help I needed although my next few years were horrific. One thing I have always found in mental health settings is that a good deal of invalidation and prejudice can happen there, alongside the care and support.

So that is  and example of my illness when she is in a foul mood and wants to hurt me. I am very fortunate not to have experienced that kind of hell for a while. The interesting thing is that now I have a lot of commitments and responsibilities which I didn’t have five years ago. This adds a dimension of anxiety to life as I would hate to cancel an event, but I did have a lot of great strategies which I learned – and put in a book! Which is where I shall finish this rather long post. I had the opportunity to co-write a book called The Guide to Good Mental Health on the Autism Spectrum with Dr Emma Goodall and Dr Jane Nugent. I essentially shared what I have learned in my 42 years of managing all sorts of mental health trials and tests. For me that is the main value to come from my illness. Here’s a link to the book if you want to see it. https://www.amazon.com/Guide-Mental-Health-Autism-Spectrum/dp/1849056706/ref=sr_1_1?ie=UTF8&qid=1469615816&sr=8-1&keywords=purkis 

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