On Tuesday I attended a showcase for Cooperative Research Centres which was held at the Great Hall of Parliament House. I am on the reference group for the Autism Cooperative Research Centre. The vent at Parliament involved an awards dinner. I spent a lot of the evening talking to various politicians and notable people. It was certainly a privilege to be included in such an event. I felt very special to be invited to such a thing.  I noticed the attitude of the wait staff during dinner. They had obviously been told to be invisible. Every time my wine glass was empty they popped up behind me with a wine bottle (and don’t worry, I declined a fair few times – i had work the next day and didn’t fancy doing it with a hangover). I made a point of thanking the wait staff when they presented me with a plate of food or a cup of coffee. I felt that there was a power relationship going on which I didn’t particularly like. I was apparently one of the important people and the wait staff were inconsequential and only there to serve and keep out of the way.

I reflected on the unlikely situation I was in to be invited to such an event. For I have not always been ‘important’. I was once alienated, disenfranchised and powerless. In the 1990s I probably wouldn’t have been allowed in Parliament House even to do the guided tour and yet here I am now in the same room as the Prime Minister and his Parliamentary colleagues. Twenty years ago I was a drug-using, slightly crazy, recent ex-prisoner. Following that, I spent many years living in crisis accommodation and begin unemployed. It took my a number of years to move past that negative time in my life and became who I am now, but these experiences are as much a part of me as writing books and giving presentations and working in a professional job.

I don’t like the concept of ‘important’ people. We are no more or less important than anyone else. In fact I like to think that we are all important. We all have a role to play. Each one of us is valued and  loved in someone’s eyes, be they a partner or child, a close friend or a cat. If we set up one person to be important due to their achievements that can leave others feeling inferior or unworthy. Yet we are all worthy of love, affection, respect, value and dignity. I find that as a slightly well known person in the Autism world, people sometimes defer to me and talk up my value. But who is to say I am  of more value than a mum of three kids on the spectrum who may not have written books or spoken at TEDx but who is doing a great job of helping her kids grow into happy, independent adults? This also raises the issue of what makes someone important or notable. I do public speaking and write books. These are apparently activities which cause others to respect me. But why is public speaking of more worth or note than raising kids? I think positive parenting is extremely important. Public speaking gives one something of a public profile but it is only one useful thing that people can do to assist Autistic people to achieve their full potential.

So I got to have dinner at Parliament House and meet politicians and I have Autism organisations telling my parents what an honour it is to have me speaking at their event and yes, it is easy to get carried away and think how important I am. However it is not helpful to do so. I need to remind myself that all humans are essentially equal and we have different paths in life. I am no more important than the person with a severe mental illness whose greatest achievement is to get out of bed each morning and keep going. I am no more important than the alcoholic doing her best to keep her kids out of trouble.  I am no important than any other human being. The value of life is not measured in achievements or in how much influence you have. We are all important, every single one of us. We all have something to give the world.

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Me at Parliament with the Industry Minister

When people talk about a friend, they are usually talking about another human being. Occasionally they will be talking about a cat or a dog or a snake or a horse. But mostly people’s friends are human friends.

I love humans  – well a select few of them anyway – but a lot of my friends throughout life have been inanimate, intangible or feline. When I was a young girl I had few human friends. Most humans of my own age didn’t want to spend time with me. Apparently I was a nerd, weird, stupid and ugly. But every girl needs friends so I looked around for them where I could. I discovered a wealth – a veritable treasury – of friends in literature. Books and their characters were my good friends for many years. Book characters also taught me about how humans operated and this helped me to understand how people in the non-book world worked. As a teenager I read every book I could find. Some were typical teenage fare – Judy Blume, tacky teen romance books – but others were from a deeper place. I read political books about injustice, a variety of poetry, biographies of artists and writers, science fiction books taking me to entirely new worlds. My resect for the authors of these books was vast. I wondered if one day I might write something myself and see my name picked out on the cover of a book, which of course I have been privileged to see as an adult on more than one occasion. As a teen I penned short stories and sent  them to magazines with an adult readership;. I was lucky to receive a rejection slip and mostly they just disappeared into a vast chasm of ‘no’.

When I left home I discovered another friend: movies. Given that it was 1992, most of my movies came from the local video store. At that time I was a socialist and loved arthouse and political movies, usually ones with horrible endings where people died at the hands of their oppressors. I cared more about the characters in my movies than I could for many of the flesh and blood humans in my life. The films I watched reflected my mood. As I was very depressed and negatively focussed I suspect that I watched every tragic film produced in the 1990s and some time before, from Pink Floyd’s impressively depressing concept video ‘The Wall,’ to such nuggets of negativity as ‘The Reflecting Skin’ and a film I forgot the name of but which ends with a teenage girl blowing up herself and her entire family after her child abuser father returns home from prison (fun times!!)

Another friend of mine throughout my life has been music. Music can be a fickle friend whose age is hard to place. When I was a child, most of the music I liked was from the past – my parents’ stash of folk records from the 1960s which I carefully placed on the record player and gently lowered the stylus. As a teenager all my music was political – Billy Bragg, The Pogues, Kirtsy McCall, punk rock from the 1970s. As a young adult my musical preferences were influenced by popular culture of the time and the choice of my peer group – mostly drug addicts and criminals. As a nineties young person I loved anything that could be captured within the category of ‘Grunge’. I also enjoyed things like the work of the Velvet Underground and Lou Reed. And strangely – for this seems to happen to most of us – I stopped paying attention to new music from the age of about 27. Recent technology has brought a range of amazing options for listening to music, from places you can download almost any song which exists to services where you can stream the same thing. I now stream a lot of music on my computer and phone and strangely I keep discovering new music which I actually rather like.

Of course the most important non-human friends I have had over the past forty years have been the kinds of friends who have whiskers and tails and say ‘miaow!’ I have had a good number of cats in my life, starting with the extraordinary mouser Smokey, then my little witch’s familiar Sensei, then Monty, Liberty (who I only had for a short while as part of a pets in prison programme in my younger and dodgier years), the quirky character Tilly the tabby and my latest feline friend, Mr Kitty. A cat can be the best friend you can have. A lot of people in my life tell me (in what they think is wisdom), ‘oh, but you’re single and you won’t have kids so Mr Kitty is good for you’, as if my little black furry fellow was a substitute for a human partner or child. A cat is not a substitute for nothing. A cat is a cat, with his own personality and wishes. I do not have him as a substitute for a human friend or partner. I have him because I love every part of him in all his catty glory.

So friends do not need to be human. I have human friends too and they have their place in my life, but the other sources of closeness I have – authors and their books, films (happier than the ones I used to watch) and music, and of course friends of the kitty variety, these are good friends too. In the past I had a very small number of human friends but the friendships I had with other things – intangible things like the characters in a book, the singers of my favourite songs – these relationships were important in my life too.  I am fortunate to be blessed with an abundance of great human friends now but I am so glad that when human friends were hard to come by, I had my intangible and my feline friends to keep me going.

My current favourite feline friend, Mr Kitty

Dear readers,

This is not my usual blog. Instead it is a list of the links for the I CAN Network. The I CAN Network is a fantastic Autism organisation run by people on the spectrum and working to rethink Awetism in terms of ‘I Can’ rather than ‘I Can’t’. I CAN hosts mentoring camps for Autistic young people and works in schools, among many other good things. They are pretty much my favourite organisation at the moment.

I interviewed Penny Robinson  – Ambassador for, one of the founders of the I CAN Network – yesterday on my radio show. We discussed that I would put all the relevant links in one spot and post them to social media and I thought that the blog format would be a good way to approach it.

So here goes…

\Website: http://icannetwork.com.au

I work full time in the Commonwealth Public Service in Canberra. I have done this since 2007. I have a very good income, an education and a mortgage. I wear suits to work. Money is not an issue for me and has not been an issue for a good while. I also have a severe mental illness.  When I moved to Canberra in 2007 I decided – after years of seeing a psychiatrist – that I would access my medication through a GP and not find myself a psychiatrist. I had been ‘well’ for many years at that point and imagined that I would continue to be so into the future.

Fast forward a few years and I had a year of stresses. Firstly I applied for a promotion at work and was successful. For some reason I became extremely anxious about the application and the anxiety took on a life of its own. I should have heard the warning bells at this point for that kind of ongoing anxiety with no actual trigger had brought about mental illness episodes in the past. But, content in the knowledge that I was a middle manager in the public service and surely mental illness couldn’t touch me, I ignored it and continued being successful. A couple of months later and I had issues with the lovely little flat I had just purchased. The apartment upstairs had a leak which went down the wall into my kitchen. Shortly afterwards I had to replace my shower and there was a comedy of errors between the plumber and the tiler. This triggered severe anxiety which lasted for six months. I could’t look at any part of my house without my heart racing. After a few months I started to have some odd experiences: I became terrified of a ghost in my house, but I couldn’t tell anyone about it as the ghost would hear me and try to kill me. I firmly believed that I was dead and in purgatory, I thought i had angered God by being arrogant, Everything looked very strange – almost like it was alive. Added to this I became very depressed. I did not access help because it didn’t occur to me that I needed it.

By the time I sought help I was extremely unwell. Then began a period of about three months of unsuccessfully trying to access assistance from the mental health services and begin told that I didn’t need it. ‘Did you go to work today?’ the person on the phone would ask. When I responded that I had been at work they would dismiss any concern I raised. The assumption was that if I was going to work then surely I couldn’t need any help? Yes, I was attending work and somehow managing to perform at the expected standard. Here is a list of other things that were going on which the mental health services neglected to ask me about:

• I would’t use the shower thinking it was leaking and instead washed with a bar of soap and a bucket of warm water
• I would’t use the washing machine because I thought it was broken. I instead did all my washing by hand
• I didn’t cook and consisted on a can of dolmades (stuffed vine leaves) and a block of Lindt pistachio chocolate each night (I don’t know what the supermarket staff thought about my idiosyncratic purchases)
• I was absolutely terrified of the ghost in my house but couldn’t mention it because he (the ghost) might hear.
• Everything I looked at seemed to be alive
• I couldn’t leave my house for fear it would be destroyed while I was away.

Had one of the mental health workers asked about these things they may have had a different response. After three months of knowing I was unwell but not knowing how to access help I was terrified that I would be unwell for the rest of my life  – which at that point didn’t seem likely to be a very long time – and to have no treatment.

What followed when I inevitably ended up in hospital was that I spent the next three years in and out of hospital, residential programs and other such (expensive) things. Had I received help earlier I imagine I may not have needed such intense assistance.

What all this illustrates – among other things – is that people like me who do not fit the rather narrow stereotype of people with serious mental illness can struggle to get any help at all. The scary things about this include that a number of people may be in danger due to this – I know I was. Also, the amount of frustration and suffering people like me experience when unable to get help is quite high and there are a lot of people in the same situation. I know. I have met a bunch of them! The other issue is around what having such a stereotype means for the people with mental illness who aren’t professional employees. When I was in hospital I often had nurses say to me ‘Why don’t you go on the pension? Working must be stressful.’ The assumption is that people with mental illness can’t work and that if we do the stress is detrimental to our health. So we ‘shouldn’t’ work and if we do, we either get overlooked for assistance or we are told to fit the stereotype by leaving our job.

I’m not going to draw a lot of inferences from any of this as it speaks for itself but it is far from ideal.

And for the record my job is the best thing I have (other than Mr Kitty!). It is good for my mental health.

Me at work

My mum told me when I was about twelve that she wanted a daughter who was her friend. My mum had lost her own mother at a very young age and I suspect she wanted to at least have some kind of mother-daughter relationship given that it had been denied her. Sadly I was not the kind of child who was a friend to their mother. I am told I was a troubled and difficult child. I used to try and run away at every chance I got. My mum recently told me that when we moved to Australia when I was 11, I was trying to escape from my parents at Heathrow airport. I was anxious and fussy. As a small child I was frustrated, angry, determined stubborn (of course most of those qualities form the reasons I have survived and a my successful self today but in a child they just made everyone;s life difficult.) I was an Asperkid in the days before there was a label for Asperkids. I had no support and I struggled to get by in the world.

When I was a teenager I was rebellious, contrary and brilliant. I was dux of the school but I was also a dope-smoking socialist who spent my spare moments with adult revolutionaries in Melbourne – 300 kilometres from where we lived. I moved out of home at seventeen – desperate to escape my family home and the country town we lived in, with what I saw as its bigots and countrified  idiots. I got a job in Melbourne and started life as an independent adult. I struggled with relationships. Housemates annoyed me so I’d move every six months or so. Because I had such a hard time at school being bullied and mistreated and because I had experienced sexual abuse, I was quite an angry and confused young woman. I started going to protests with the sole wish to be arrested or fight with the police.At around this time I the met the person who changed my life and not in a good way. We shall call him David in the safety of this blog.  David was an anarchist and an evil man. I was attracted to David because he liked the darker side of life but I soon became aware that he was a terrifying psychopath who would kill me – and anyone else – with barely a thought. I couldn’t get away from him so I became a reluctant accomplice in his criminal acts. At the age of 20 I found myself in prison. My mum found out about this by listening to a news report on the radio. Understandably she was devastated,

I was not my mum’s dream daughter who would be her friend, I was a dangerous, druggie criminal left-wing extremist who was so caught up in her misery that my mum and her feelings were not considered at all. The next fews years were similarly disturbing. On one occasion I lost contact with my parents for many months. They thought  was dead.  Now that I am older and can see beyond my own experience, I realise how terrible those years must have been for my mum, I was a hopeless case. But a strange thing happened in our family. When I first went to prison, an elderly and rather conservative relative said that if her daughter went to prison she would move overseas. My mum told me that this was not a sentiment that ever crossed her mind Abandoning me to my fate was not an option for my mum and dad. They stuck by me regardless. They moved my possessions to countless different addresses, they sent me money in prison, they visited me, they went to court on my behalf, and most importantly they loved me. I suppose they thought that even if I was not long for this world, I would at least have my parents’ love.

So when I was 25 and decided to make some changes in my life, my parents were right there beside me, encouraging ad supporting, I will flash through the last fifteen years or this will be a very long post, but I am now so far removed from my criminal, dug addled, socialist self that some people doubt that I am telling the truth when I speak of it. I am a public servant, an author, an Autism advocate and I am highly-regarded by a lot of influential people. I am happy,  own my own home and I have a Master’s degree. I often send my mum and dad things I have written or speaking opportunities I have been given. My mum always responds with genuine enthusiasm.

I am truly the prodigal daughter. My life which was lost is now found. One of the things which makes me happiest about how my fortunes have changed is the impact it has had on my parents, particularly my mum. And yes, my  mum is now my friend. I love her more than anyone and I am so glad that she now gets to support me through successes and not disasters. She is an amazing woman and I am eternally grateful to her and my dad for their support when I was in a bad place. I strongly believe that their love and support helped me to become the me I am today. So thank you mum and happy Mothers’ Day.

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I have been writing poetry since I was about eight years old. It was my first conscious creative output. As a child I mostly wrote about things which moved me or affected me on a deep level, often based on events from history or current affairs. I would have my little book with me as a young teenager and write about things which piqued my interest, including some men surfing and the power of the ocean (during a beach holiday), prejudice and discrimination, Christian themes and nuclear way (it was the age of Ronald Reagan and I hate to say it, but the chance he would get confused and launch the third world war seemed rather likely). MY whole life has been punctuated by art and literature (pardon the pun). I wrote sporadic diary entries and poems throughout my troubled twenties.

I think my poetry muse much have taken a long holiday between about 2002 and 2010 as very few odes emanated from the pen – or MacBook – of Jeanette. In 2010 I got quite unwell with my muse and creativity’s constant friend, mental illness. I wrote some poems for a competition and it got me going. I have recently written 30 poems in the month of April for the NaPoWriMo (National Poetry Writing Month) event. I have shared a select few of my recent poems here. Some were published and others not. I rather like them, my little literary friends (and no, poetry isn’t hard. The only kind of writing I find difficult is novels. Everything else requires about the same amount of effort as getting the bus to work. I know, it’s completely unfair but I struggle with other things – promise!)

Monday (written about being hospitalised for mental illness in 2011. It won a competition – yay. I spent the prize on books)

Monday

I put on my suit – armour against the sword of daily life

I took the bus to work

Thoughts passed through my mind

of awful and inappropriate actions.

I swiped my card. The perspex doors gave way at its bidding and I was in the lift

I got out at Level 5, walked to my desk and logged on

The emails made no sense

I took myself to a private room and called Kathy, my capable clinical manager

“Go home” she said

but I was determined.

After what seemed no time my Manager was driving me to see Kathy, concerned.

The world seemed to close in – there was no future

Kathy was concerned as well – worry etched in her features.

A trip to the hospital

Waiting

I escaped. Kathy gave chase.

Police walked by

I looked longingly at their guns

but what sort of public servant would that make me I thought

A dead one.

Kathy leaves me at the assessment unit

In my suit.

My make-up perfect, jewelry matching my clothes

Work shoes newly polished.

There is no tomorrow I think, at least, not one in which I want to be.

The psychiatrist – young, cocky, male – sends me to PSU, the locked ward, for my own protection.

I arrive that night

In my suit.

“Do you work here?” asks an intern

“no” I respond gloomily. “I’m just a well-dressed patient.”

Outside the rebels storm the winter palace and the sky explodes,

Inside I’m safe, medicated and confused.

The world goes on around me, unaware and unconcerned

When I grow old… (this one is published in an anthology of poetry by people with Autism)

When I get old…

When I grow old I’ll complain at length about the ways of the day

to anyone left long enough to listen.

I’ll wear stylish clothes

makeup

heels

perfume – something suitably musky

I’ll eat at the best restaurants

Go to the theatre

the opera

And secretly smoke

rollies.

And only let my closest confidantes in on the secret.

I’ll watch adaptations of Agatha Christie

and every program on the ABC on a Sunday night.

I’ll tell my friends and family that I don’t drink

then sneak the occasional sly glass of wine

only publicly partaking at Christmas

I’ll reminisce about my long-gone youth

(not all the stories will be true).

I’ll live in a crumbling mansion.

I’ll not-so-silently judge the youth of the day

And I’ll push into supermarket queues

Thinking I have lived long enough to garner such a privilege.

I’ll be a legend

A survivor

A historical character.

Sometimes I think I can hardly wait

until I get old.

 

Mum (from my latest effort which is currently begin judged – so no-one plagiarise it please!! 🙂

My mum is not the average mum

She never gossiped with her girlfriends at the school gate

She never wore heels

or make-up.

She did have three lipsticks from the 1970s – a pink one and orange one and and sort of melted brown blob

She didn’t ever watch rom-coms

She stopped buying music in about 1963.

She never talked about being a lady

or using your feminine wiles

(whatever those were).

She tromped around the garden in gumboots

and a jumper from he dark ages.

When I was little there were lots of books

Little kid books

Christian books

then books we could read by ourselves.

One day my mum read a magical book from her childhood.

It was precious. a treasure.

She only read it to us once to keep the pages from falling out.

It was from the ancient history that was my mum’s own difficult childhood

She read it as if preserving her fragile history

Stopping its few good memories from disintegrating into crumbs.

Mostly my mum’s idea of calming reading was the book of Revelation.

At 10 I knew all about the whore of Babylon

But I’d never watched Mary Poppins.

My mum had a word for every occasion

a logophile

(ironic that one needs to be a logophile to know what one is).

In a sea of Englishness she sported an Australian twang.

England was always too cold.

too windy

she’d set up a vivid orange tent on every English beach

We never got lost

We’d see the tent’s toxic hue and come whirring back like homing pigeons

If pigeons liked dribbly ice cream and seaside rock.

As I got older my mum transformed

She was now my best friend

In the absence of friends my age.

I could tell her anything

I’d stand behind her and brush her hair

Hundreds of times

Thousands when measured in days and months and years.

Whenever I was in trouble she’d be there

Ready

Amazing.

Some time after I gained for myself a label

‘Jeanette:Aspie’

I went through adulthood the lone labelled person in our quirky Purky world.

It was almost a sleight – why just me when others in our midst may benefit from a swipe from the label machine?

One Christmas I was home

My mum comes up with unknown intent

She thrusts a card into my hand

‘I want the assessment. Give me the label’ it read

Clinician visited

Label attached.

My mum, my friend, my champion all along is now in the club –

we are in it together

The same

Our perfect club of two within the larger club we’ve been in all these years.

Our labels bear the same name

‘Thank you mum’

My past and me (another from the competition I’m in – I love this one)

Now

I am your success story

Your example

Your role model

You pay to hear my wisdom

How can this be?

Then

I am broken

Afraid

A lost cause

Example of what not to be

A cautionary tale

A mistake

A fallen thing

A tragic thing

Hopeless

Futureless

Yet here I am.

I look back

I find that other I

There she is

There I am

‘Come with me’

I reach out my hand down the years

Connecting, just.

I hold her

I am you

You are me

She buries her sorrow in my chest

And we become whole.

Tragedy and triumph together

She is with me and I am with her

Reconciled.

Not fixed but learning.

I hope you enjoyed those. I really enjoyed sharing them.

Me signing something – hard to stop me once I get going. I’ll sign anything that sits still long enough 🙂

The title of my blog alludes to mental health but there aren’t a lot of posts in it which look at issues around mental health. I do have some mental health idiosyncrasies though, namely a psychotic illness and some mood issues – depression and hypomania. It has taken psychiatrists many attempts to give me an accurate ‘label’ for my mental illness and in fact at this stage I don’t have a ‘box’. My sensible psychiatrist realised that trying to shove me into a diagnosis which does’t fit is pretty pointless and makes all of us unhappy.

Anyway, my brain acts like an idiot at times and gives me a lot of grief.  For the past couple of years I’ve had either mania/elevated mood or depression roughly every six-eight weeks. I have no idea how that works but it is certainly challenging. Recently I have been a little elevated. Sleep hasn’t been happening so much and I have been delighted at all the work I have to do. I have found it hard to stop doing things and go to bed. ‘I’ll just get THAT done…’ I tell myself.

On Sunday of last week I worked on a presentation for four hours without any kind of break.  That evening, when I finally did get to bed  I could’t sleep at all and saw all sorts of odd things on the wall. Apparently Albrecht Speer (evil Nazi architect responsible for scary propaganda and buildings in Germany) had done the decorations as I seemed to have wallpaper with a swastika motif. Horrified by this evil in my bedroom I closed my eyes and saw that the reactionary, murderous decor had changed to thousand of little skulls on my walls – better, but not much. I told Mr Kitty that I loved him about 100 times and then worried that this would mean he would die. When I did get to sleep I dreamt that the micro fibre cloth in the bathroom – which is pink and fluffy – was in fact highly toxic and would kill Mr Kitty and me almost instantly the next time one of us went to the bathroom.

The next day I realised that maybe I didn’t have evil architects, toxic fluff or the Grim Reaper in my house. Maybe my brain was a little bit more energetic than it should be. I went to work – for a little mental illness is rarely enough to keep me from my work – and thought I should tell my managers that I was feeling a little under the weather, brain-wise. First I told my lovely part-time Director. She was amazing and had a bunch of suggestions and care. I then told the other Director. He has been my boss for a long time and remembers when I was spending time in the psych ward, so he is certainly not squeamish around my particular health issues. He also had good advice and kindness and understanding. The one thing I was struck by was the level of compassion and care my managers always seem to show. I’m told that this is not the case in all workplaces, which seems strange to me because we’re all human, aren’t we? But I suppose that some people are prejudiced, ignorant or both.

When I got home I called the local mental health crisis team – who all seem to know me – and the person I spoke to was great. The next day my clinical manager called and we had a good chat. As is often the case, the act of sharing and acknowledging that something isn’t quite right with my health seems to give me power to put my strategies into place. I have felt much better the last couple of days. And tonight I was speaking to a truly lovely church friend who is also a GP and she asked a bunch of questions just to be sure I was OK.

I was struck by a few things from all these interactions…

1. I have some amazing friends and managers

2. It doesn’t take a lot assist someone with a mental health issue a lot of the time, just a willing ear to listen

3. Sadly a lot of people feel uncomfortable to help someone with a mental illness, for various reasons. This also has the effect that the person with the issue may feel uncomfortable to talk to anyone about there experiences. This is a very bad thing because ‘you alone can do it but you can’t do it alone.’

4. If you are uncomfortable talking about mental health stuff with a friend or colleague, think of it as if it were a physical issue like diabetes or heart disease

5. I am probably only here because in the past good and loving people have listened and helped when I had problems. Thank you to all those people. If you are reading this you know who you are.