‘Nice!’

I’m sure if I ever did one of those Wordle diagrams based on the words I use most frequently in correspondence that the biggest number of ‘hits’ would be for ‘lovely’, ‘great’ and ‘fantastic!’ I am the nicest person I know. I am helpful, thoughtful, considerate and obliging. I will go out of my way to help anyone. I spend as much time on voluntary activities to help others as I do on my paid work. This has not always been then case. It was the  result of a deliberate choice. I made a conscious decision some years ago to be the very helpful person I am now. There were a few reasons for this.

As many people know, I am Autistic. When I was a child I had quite a different experience of empathy to almost children. I didn’t used to have emotional empathy or logical empathy. Wheat I had instead used to terrify me. I believe my experience is now described as hyper-empathy. An example of this was when one of my friends at church lost her father I stood next to her in Sunday school and absorbed all her grief and despair. It was as if I had lost my own father. I wanted her to stop feeling that way for what were then quite selfish reasons – I was overwhelmed with her raw emotion when I was near her and this was very distressing for me. I went through life feeling everyone’s horrific emotions like they were my own. To counter this I became aloof and distant. I steered conversations away from anything remotely personal or emotive. That combined with my social awkwardness and strong opinions meant that people tended to think I was a rude and selfish person.

I grew older, moved out of home and met an evil man who I was too naive to be cautious of. We started a relationship and I discovered he was a violent and cold-hearted man. By then I was too involved with him to escape. We did terrible things and found our punishment in prison. The worst punishment for me was my inability to have an emotional connection to the violent things I had done. I couldn’t feel guilt in an emotional sense despite my knowledge that I ‘should.’ I thought that I must be a monster and a psychopath. I went into a shadowy life, trying to reconcile myself to crime and my apparent lack of connection to other people.

After a few lost years I made some changes. In twelve step programs there is an understanding that people get to a point where they can no longer continue – they either die or make dramatic change and start on the road to recovery. i decided I would stop my destructive life and understand how human beings ‘work’. I would be kind and positive and helpful. I learned that if you make the decision to do so, changing your life is very possible and changing your character is doable as well. I turned my character from being  negative, destructive  and detached to being the me I am now, The main catalyst was the change in my attitude. Your attitude underpins every facet of life. It can be hard to change your basic approach to life but I am proof it can be done.

I soon found being a positive and kind person was far preferable to being a criminal. I also found that my basic character actually was kind. All the negativity and destructive behaviour was a sort of overlay on top of a basically decent human being. The biggest challenge as ‘nice’ me was assertiveness. I could never stick up for myself and was terrified I would lose friends if I didn’t acquiesce to their every wish. I should note that my lack of assertiveness was not a result of my being kind and helpful. I am very assertive now but I still care for others. My lack of assertiveness was most likely a combination of being bullied all through high school and having a low self esteem and then having been in prison for some years where people were violent and dangerous and I was afraid to disagree with anyone.

I basically uncovered my core personality of ‘nice.’ I am very happy about this. And ‘nice’ has some applications through my life which enable me to get by. My ‘nice’ can head off prejudice and can help open conversations around Autism and mental illness. It also means that if I am angry people take it very seriously.

My ‘nice’ is not the solution to everything and it is also not for everyone. Some people have a load of righteous anger and indignation – which is often a very useful thing if their is discrimination happening, You are never going to see me storming the Winter Palace or anything like that but my approach is effective for me. And I’m 10000 times happier than I was before I put on my metaphorical yellow fluffy beanie of ‘nice.’

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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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Are we connected? – Social connectedness

I am what is often referred to as an empath. I can feel people’s emotional state before I see them or talk to them. It is an excellent quality in my life as an Autism advocate but at times it can be very challenging, such as if I am in the psychiatric hospital, where I pick up on all the misery, confusion and anger of others nearby.

This afternoon I was coming home from work on the bus. It was an extremely rainy day and everyone was damp, soggy and irritated. I was irritable too and silently  cursed people knocking against with wet umbrellas and shopping bags, I noticed the woman opposite me. She was definitely irritated but also very sad. I saw her as quite defeated and vulnerable. I didn’t know what to do as it is usually frowned upon to raise issues of a strangers’s mental state in a crowded bus – mostly be the person whose mental state one is concerned for. I battled for a while – do I say something or not? In the end I opted not to say anything and simply hoped she was OK. I felt a bit cowardly. I hoped she had someone to look out for her and support her through a difficult time. But I was unable to connect with her as a stranger on public transport because I was concerned about the conventions around such things. She was not  afire or family member so I ‘couldn’t’ help.

This raises an issue which I think about a lot – that of social connectedness. In Australia and other western sorts of countries we tend to be insular. We usually care most about our immediate family, friends and pets, then work colleagues and people we now through our interests and activities. Acquaintances and then strangers are usually beyond our level of connectedness. We might not want bad things to happen to them but it has little impact on us if they do. As I did with the sad woman on the bus, we avoid tends to contact with strangers regardless of how sad they may seem. It is ‘none of our business’.

Last week I had to visit a medical specialist. I am always a little anxious meeting new doctors given some of the invalidation and abuse I have received from medical professionals in the past. I worry that when they see my brain related diagnoses (Autism and schizophrenia) they will pigeon hole me if I’m lucky and discriminate against me if I’m not. The specialist last week was pleasant and respectful but he clearly had no idea how to ‘take’ me – my manner, my apparent quirks and probably what he probably  saw as an incongruous mix of attributes (schizophrenia, a public service job and private health insurance). He asked me three times whether I lived with or near family. I love my family but if we lived together there would be  a lot of annoyance and shouting and other unpleasant things. We are close but also very different and I find my relationship with family is best conducted via email or telephone with two states separating us. What I think the doctor meant was whether I had support and social connection. I do have a lot of support these days form people who I am not related to but who care for me in a similar way to what family is expected to do. (Of course lots of families are not supportive and are in fact abusive and toxic but our social views tend to see the family as a safe place).

My social connectedness now is amazing. Sadly for others in  the world – including many people with similar diagnostic labels to me – social connectedness is a real struggle. Social connectedness ensures we have someone to turn to when things are difficult. If we have to move out of our home, friends and family may assist with sharing their home with us or putting us on to someone who has a vacant room in a share house. Friends or family care for kids if we can’t get a baby sitter so we can do things to improve our lot – like going to a job interview. Social connectedness means when we are desperate and depressed, or doing battle with inner demons, that we have someone to talk to other than a stranger on the end of the phone at the mental health crisis team, a Lifeline counsellor or police officer.

Social connectedness is essential to mental health and wellbeing, our sense of belonging and our self-worth. It is a hard thing to manufacture. After I was released from prison in 2000 I decided to lose all my friends as they were criminals and drug addicts and I thought it would be hard to make a new life for myself while spending time with people who didn’t share my hopeful aspirations. This was a positive move but meant that  I spent over a year with only my parents and my brother’s phone numbers in my address book. They got a lot of calls. Looking back, if I hadn’t hard those three people in the world to talk to I probably would have gone straight back to jail. I knew women in prison who were in exactly that situation. Their life is awful  but it was almost impossible to make change and build positive social connections. I think the older one gets the harder it can be.

There are ways of building our social connectedness and it can be a bit of a ‘snowball’ effect with one connection leading to others. I have met a lot of friends through the autism community, mostly online. Interests can be a good place to find friends. Pets can be great friends and much less complicated and confusing than some humans. I think one problem we have is that focus on the family as being a haven and safe place. If it is that is great but some many people have issues with their family – divisions between members, prejudice, jealousy, abuse and violence all occur within families and sadly  they occur way too often. Sometimes your family will not be part of your social connection and that is actually OK. Grieve as you need to for the loss of the ideal of family and then seek out connections outside your family. It means that you are taking charge of your connections.

Social connections are particularly hard for those of us on the Autism spectrum but it is possible to build them. Even if you are at a point where social connections and few and far between, things change over time. It is also important to understand that it is not  failing if you have few social connections – it is simply what it is.  There is nothing ‘wrong’ with you. A number of factors often influence your social connections.

Prosopagnosia – ‘Do I know you from somewhere??’

I am told that when I was eighteen months old, my mother, brother and me went overseas for six weeks and left my dad at home. Apparently, when we were greeted at the airport by my dad, I was terrified of this strange bearded man and had no idea who he was.

I have had face-blindness (or ‘prosopagnosia’) since I was a baby.  It is one feature of my unique neurological and cognitive makeup which I would be very happy to live without. What it means is that when I meet somebody, even someone in my close family, I might not recognise them the next time I see them. Prosopagnosia seems to be more common amongst Autistic people and it can lead to some challenging social situations and embarrassment on the part of the person who fails to recognise somebody who expects them to.

When I was at high school, there were two girls who were bullies and really seemed to enjoy picking on me. Unfortunately I couldn’t tell one from the other, so always called them by the wrong name. Nobody I knew in the 1980s seemed to be aware of this difficulty. I would have given anything to know one person from the next. In a school where the students were – in my mind at least – divided into the ones that hated me and the ones who were friendly or indifferent, it would have been nice to know which ones were which! It certainly led to some awkward situations.

Many humans periodically forget others’ names, especially people they have just met. Oh what I would give to have that issue! I remember the name of everyone I meet and also store a few helpful facts about them, as I have a good memory for names and facts. However, when it comes to remembering what they look like, it’s about 50/50. Many people think you’re rude and have forgotten them if you forget what they look like as prosopagnosia was until recently, almost unknown in general society.

I featured in a documentary about autism a few years ago and while it was being filmed, I arranged to meet up with the director at an exhibition opening at a large art gallery where my work was featured. All my other artist friends were excited to be included in the show but I was worried about remembering what people looked like. When the film director arrived I knew that I had met her before but had no idea whether she was the film director or one of the gallery staff who looked similar. Eventually I worked it out from the context of what she was saying. Given that the film was about autism, the director was very understanding but I remember silently cursing my difficulties with facial recognition.

For some reason, my prosopagnosia only applies to certain people. There are some people that I meet once and remember every time I see them again and their are others who I’ve met dozens of times and still have no idea what they look like.

I work in a large Government department. We employ about 2000 staff. I have worked in this department for almost ten years, so I have worked in many different teams with different people. I’ve probably worked with over 150 departmental staff and met about 300 more in the course of doing business. Unfortunately, the longer the time since I have seen someone, the less likely I am to remember them. I’m often explaining to rather put-out ex-colleagues that if they just tell me their name I will know exactly who they are! Recently this problem has been compounded by the fact that I have received a lot of publicity around my Autism advocacy work. I now frequently find myself getting in the lift in my work building and seeing people who obviously know who I am and trying to work out if they are a previous colleague – who I should recognise – or just somebody who’s seen some of my publicity. If I were to list my top three difficulties at work, I think the face recognition issue would be about number two!

Some tips on dealing with this problem

  • Never assume that other people – especially neurotypical people – will automatically understand that you can’t recognise faces. most people are to aware prosopagnosia even exists.
  • Don’t try to hide it! Gently explain your issue with facial recognition. This can help build understanding among people who otherwise might have thought you – or others they meet who have prosopagnosia – simply rude or dismissive.
  • Some people with prosopagnosia make notes of physical attributes of people other than their facial features, including:
    • Fashion sense (particularly useful if the person has a unique dress sense)
    • Stance
    • The way they walk
    • Mannerisms (such as hand gestures)
    • Particular items, such as a handbag they always wear or a certain taste in jewellery
    • Hairstyle (although obviously this can change)..
  • If you meet a new person, especially someone in a business or professional context, or the new partner of a friend or family member, explain your prosopagnosia at the outset.
  • Try and make a bit of a joke of it – humour can relieve tension for both you and the other person and helps them feel at ease talking to you about it.
  • Be prepared for some questions or comments, but don’t worry as adults will generally not criticise you for your recognition problems. They may, however, be quite interested in your experience, especially if they have not knowingly come across it before.
  • If possible, meet people at their house or at your house rather than in public places.
  • However, if you are meeting somebody you have difficulty recognising in a public place, like a cafe or bar, there’s a few things you can do to alleviate the problem:
    • Arrive early and let them come to you
    • Prior to the meeting, let them know that you might not recognise them so they aren’t offended if you walk past them
    • Take a photo of them with you and refer to it (while noting that some people with prosopagnosia – like myself – do not readily recognise people from photos either)
    • Ask them prior to the meeting what they will be wearing.
  • Sometimes you will find that the more often you see someone, the better you will be able to recognise their face.
  • Prosopagnosia is nothing to be ashamed of – it is part of your neurology. I once read that many Autistic people process human faces in the same way that we process objects in our brains. When you think about it, a lot of tables look the same! It is something we can raise understanding around through discussing it and helping others know it exists and it doesn’t mean we dislike people – it’s just that our brain might not hold their face quite as clearly as others’ brains might do.

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Doing battle with the ghost within

I will preface this rather deep and dark post by saying I am OK, I will be OK and even if I am not OK I have many strategies, supporters, friends and a black cat which will all work together for good.

I was coming home from work this evening and I was in the epicentre of a sort of cyclone of death. Thanks to my schizophrenia I had been hearing colleagues discuss my demise all day and when I was walking home from the bus stop in the dark, I had an entourage of ghosts. There was The Grim Reaper (and for some reason his children) and I could feel everything combining to end my life. The culmination of a lifetime of terrors seem to have been stalking me recently. There is a reason for this.

A few months ago I noticed some concerning gastroenterological symptoms. I knew I should talk to my GP but didn’t. This is not like Jeanette at all. Jeanette – at least the sensible, public-facing Jeanette who gets up on sage and writes positive and encouraging articles – will always advise people to consult a doctor when concerned about health issues, take medication as prescribed, exercise and eat well and all those sorts of things. My mum was a radiographer before she retired and her specialty was mammograms. She would tell me that some women will know they have a lump in their breast for years before they seek help, too worried about how to deal with bad news to seek assistance. I used to think how silly these women were. If you had a health concern, surely the logical course of acton would be to address it so that you can catch anything nasty early and stop worrying if you don’t need to worry? Sadly I wasn’t listening to my own advice. I was dancing to the tune of the denial waltz.

The health concerns continued for months and still I did nothing. I didn’t even bother thinking of excuses to go to the doctor, I simply didn’t do it. I made and then cancelled an appointment figuring I wasn’t ready for any stressful experiences at that point in time. A couple of weeks ago I was in so much pain I needed to leave work quickly. For the first time in my life I didn’t know if I would get home or not. Still not wanting to make a fuss, I didn’t go to hospital or my GP. I just struggled home on the bus in agony. This experience told me I needed to do something about my health concerns. Because I had kept my worries a secret and not told anyone, I found it very hard to pluck up the courage to share my concerns with another human. First of all I confided in Mr Kitty. I cuddled him and he said purr. I figured he would want me to do the right thing, given that, aside form cat food, I am his favourite thing in the universe. I then called my confidante and coauthor Emma but she didn’t pick up her phone so I left a message. But I knew I needed to let the secret out or I could never get assistance. I called Lifeline, which is a go to service for me when I am struggling with mental health issues. The young man I spoke to was wonderful. I promised him I would make an appointment to see my GP. After telling him I was able to tell other people my concerns.  I booked an appointment with my GP, thinking she would give me some fibre supplements  or something.

My GP appointment was on Monday of this week. When I described my symptoms my GP said straight away ‘you need a colonoscopy. Make an appointment – you won’t need to see the specialist. And I’ll send you for a gastroscopy too.’ She then asked me about my family history  – grandfather bowel cancer – died, uncle – stomach cancer – died. Father – atypical abdominal tumour – still with us thank heavens! (I love may dad lots ad don’t want him to die ever if I have any say in it!). She wrote all this down and looked concerned. For the first time I actually felt genuinely concerned myself. I made an appointment to see the specialist and that will be on Friday 15 July. I have never been scared around  illness and disease – at least none of the illnesses which affect other parts of my body than my brain. When I told people at work and friends they all said ‘it’s nothing to worry about. you will be fine.’ I thanked them and said ‘me too!’ with a false smile. Actually I am terrified.

I told myself I would not get stressed and  have managed to do that quite well. It’s not that I have no stress I just think I am able to cope with it by pretending it isn’t there. I become aware of the stress I am under when an angry outburst at the cat happens for no particular reason or when someone says something on social media I don’t like and instead of my usual eye roll I yell out obscenities. I decided not to visit ‘Dr Google’ but stupidly relented yesterday. I found myself hunched over my laptop crying.

For an Autistic person and a schizophrenic one hospitals and physical health stuff is particularly daunting. Even if I have a not so life threatening illness I am concerned about procedures and having to spend time in hospital. I hate hospitals but I have spent many months and possibly years of my life within their sterile and disempowering walls. When doctors and nurses see patient Jeanette all they have to go on is  those diagnostic labels on my chart. There is never a diagnosis of Amazing Author or even Volunteer of the Year. Having Autism and schizophrenia as the only things to define me can be problematic.

The limbo of waiting is horrendous too. I try not to think about any outcomes of the investigations but I invariably find myself at one of two extremes, the only options I can seem to imagine  – ‘Jeanette has three months to live so she had better cram in as many conferences and articles as her sick little self can manage’ – and ‘There is nothing wrong with Jeanette. She can continue making a difference and sign awesome without any horrible heath conditions or smelly ostomies….’

I still manage to go to work and I am still helping others and fitting in my full workload but I am in a sort of misty grey realm of not knowing and worry which is just about destroying me whenever I stop to think about it.

So I suppose the moral of the story is go to see your GP when you are worried about your health at the time the worry occurs, not several moths later. And Jeanette is scared and she is doing her best to be positive and OK. Mr Kitty is having lots of cuddles and maybe the world needs a book about accessing health services for Autistic people and maybe I can use my experience – whatever it turns out to be – to inform such a work?

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