Tips and strategies for managing mental health nasties

As some of you may know, I am one of those people with an additional diagnosis to my Autism one. I have a mental health ‘label’ of atypical schizophrenia (or as I tend to view it, the ‘mental illness sampler’ as there seems to be a little bit from each of the main illnesses: psychosis, depression, anxiety, intrusive thoughts and elevated mood). My mental health issues have followed me through life for more than half the time I have been on Earth. They are like an old enemy that visits from time to time and destroys your house, metaphorically. In the past my mental illness has come as close to destroying my life as one can imagine. Being unwell is scary, demotivating, disempowering. It is an ordeal which makes me question my worth and my value and doubt that I will ever be free of the misery and suffering. I hate my illness with a great passion but I do have to accept that it is also a part of who I am. Conversely my Autism is more like a quirky friend that other people don’t quite understand and which sometimes makes a social faux pas but which essentially has my interests at heart and wants good things for me. It is also very creative and clever  – a little imp which tries to change the world just a little bit, for the better.

My illness has been visiting the last few weeks. Her presence has made me remember that I have some useful strategies for dealing with mental health nasties. I thought I should share a few with you so here goes:

  • You are in charge of your destiny. Whatever your illness or self-doubt tells you, you are the boss. Don’t let something negative like an illness dictate your actions. It won;t do anything positive. Instead, tell it that the choice in your actions is yours. I sometimes find actually saying this out loud can be helpful (although maybe not at the bus interchange!)
  • Remember that there are many people experiencing similar things to you. You are not alone.
  • Always be aware that your actions have consequences and if you do something on impulse, even if it seems the best course of action at the time, you may regret it for a very long time.
  • Mental health distress is temporary. A crisis often lasts for only twenty minutes or so. Even though it is difficult, tell yourself that how you feel during a crisis is not how you will feel in the future.
  • Seek help if you need it. There is no shame in this and it is a sign of strength.
  •  Avoid drugs and alcohol, even a small amount, when unwell. (This does not include your prescribed medication of course!)
  • Distract, distract and distract some more! Distraction helps your brain to focus on something other than your suffering and pain. Everyone has a different distraction/s that works for them. For me it is work (hence writing this blog!).
  • Pets can be great therapy.
  • Stimming can really help when we are stressed or struggling with mental health issues. I have a bunch of fidget toys and shiny things, plus the sensory wonderment of my little black kitty and his velvety fur and lovely, healing purrs.
  • Try to build your confidence and self-esteem as much as you can. This will not happen overnight but it is a great protective factor for health so view it as an ongoing project.
  • Try to spend time with positive people who support and care about you. Likewise try to excise negative and toxic people from your life.
  • Remind yourself or something you are grateful for or something positive every day. You can write these down.
  • If writing helps you to express feelings and issues, keep a journal.
  • Be ‘in the present’ – try not to dwell on the past or worry about the future. You can’t control either. Instead focus on getting through the day now. There are exercises which can help with this, including mindfulness meditation.
  • Engage in meaningful activity such as community activities, family, work, study, volunteering, Autism and/or mental health advocacy.
  • Avoid self-stigma. Remind yourself that a mental illness is not a punishment or a failing, it is just your brain chemistry and your experiences conspiring to make life difficult. Maybe think of it like this: if you had a broken leg would you not use your crutches at your workplace, despite it causing great pain, because people are prejudiced against those with broken legs and think them unreliable and accident prone? Of course you wouldn’t! So likewise, a mental illness is something that can happen in your brain which cause pain – emotional rather than physical. It is nothing to be ashamed of.
  • If you like, get involved in mental health and/or Autism self-advocacy groups. There are a lot of these on social media, These can help you to connect with other people experiencing similar things and to build your pride in yourself and self-worth.
  • Remind yourself of how well you have done to get to where you are. You can even buy yourself a little present or treat yourself.
  • Tell yourself that you can get through this and things will change.

I hope some of those tips are helpful. I’ve just finished writing a book on mental health and the Autism spectrum with Dr Emma Goodall and Dr Jane Nugent. It is absolutely full of useful information on all aspects of mental health which people on the Autism spectrum might need to know about. It is due out in mid-2016. I’ll obviously keep you updated on progress and where you can find s copy when it comes out. I suspect my dot point list doesn’t really do justice to all the helpful information that exists but it is just a quick list of some of the key things that help me.

Now I’m going to take my brain and make a cup of hot chocolate and maybe read a book.

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And I find looking at beautiful things like flowers and sparkly paper always cheers me up too!

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When my political was personal – Autism and belonging

I am probably the most conservative person in the world who regularly listens to communist folk music. I reflected on this as I listened to a folksy rendition of the old far left standard ‘Solidarity Forever’ on the bus coming home. So why would a forty-something property-owning bureaucrat be listening to the strains of socialist hymns so enthusiastically? Socialist music transports me to another time and another place. I was a Trotskyist teenager, an enthusiastic member of rent-a-crowd, a rabble-rousing red flagger, a card-carrying member of the worker’s vanguard (well, I thought I was). My comrades were composed mostly of skinny, awkward students with a smattering of older, leadership types who had been around since the Viet Nam war. Why was fifteen year-old me hanging around with these dubious role models? They were my culture. I belonged to them. All I had to do was spout the party line – which was very helpfully expounded on every page of their newspaper. In return for my loyalty and weekly labour on the bookstall dodging insults from passers-by who did not share our views on Trotsky’s theory of permanent revolution, I got the most valuable commodity of friendship. I would do anything for acceptance and friendship after years of being ostracised and victimised at school. I don’t think socialist Jeanette was alone in the value she placed on friendship and acceptance.

Humans are a social animal. We tend to need to feel aligned or attached with others. Non-Autistic people seem to be particularly good at spotting potential friends and aligning themselves with them from a young age. School is probably the first place where people form those sorts of friendships and attachments outside of their family. Autistic kids can really struggle at this. They watch as other children make friends and join groups and they often try to be included but are rejected. I tend to think that children are similar to adults but without sophistication, so if a kid doesn’t like another kid they will met likely reject them in more obvious ways than an adult would. This can mean that children on the Autism children can take on a lot of negative messaging and think they are unlikable. This coupled with the active bullying people on the Autism spectrum often face can leave them feeling alone, ostracised, different and alienated.

Given that humans are social creatures – including Autistic humans – this alienation can leave some Autistic children, teens and adults desperate to belong to a peer group regardless of what that peer group stands for. I moved from a conservative Christian childhood to socialists to drug addicts and criminals. My self-esteem was so incredibly low that I never questioned the values of the groups I was aligning myself to – I took whatever social acceptance I could get. This is true of others on the spectrum too.

One casualty of joining any group that will accept you is that you can lose your sense of identity. Women and girls on the Autism spectrum in particular are often adept at fitting in and being a sort of social chameleon in order to be accepted and join a peer group. While this can mean they are accepted, it can be exhausting keeping up appearances so to speak and can mean they lose a little of their own identity.

Of course Autistic people shouldn’t have to try to fit in with any old peer group or deny their own identity – no person should ever have to do this. In recent years there has been an emergence and blossoming of Autistic self-advocacy, Autistic pride and people starting to value themselves just as they are, their own perfect selves. Social media has played a part in linking Autistic people from around the world and creating a place for Autistic people to meet others and build our community. This is a great thing. It would have been nice if I had this when I was young, impressionable and sad, but it is great that it exists now. I hope that the recent focus on Autistic self-advocacy and pride will continue and that maybe in the future that sense of alienation and difference that Autistic young people so often experience will be replaced with one of genuine belonging.

Some thoughts about belonging:

  • Autistic people often have as much need for belonging and acceptance as others do.
  • Belonging to a peer group can be either face-to-face or online, over the phone or any other way – whatever works
  • Some people only want one or two friends, others want a larger group,. There is no right and wrong with this. It is up to the individual
  • In my case, the views of the group belonged to were not really that important. The value for me was in being part of a peer group. This can be dangerous, especially for people with low self-esteem who may align themselves with groups engaging in negative or dangerous activities
  • Autistic people do not necessarily need to only have friends in the Autistic community. ‘Cross-cultural’ friendships are OK too, providing they are respectful
  • Auitstic people are not necessarily thoughtless, bad friends, selfish or any of the other negative stereotypes which are sometimes applied to us. We can be amazingly thoughtful and considerate – in my experience we usually are.
  • I spent years trying to be accepted with little result. When I discovered that I am Auitstic and then when I discovered my Autistic peer group, I came home.

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Yep, one of my best friends is furry and says meow

“I didn’t mean to be rude!” – Communication differences and Autism

I recently attended an Autism conference. During a break I started talking to some lovely women from a Government programme who had a stand in the exhibition hall. They asked if I wanted a bag of goodies. Conscious of the weight limit on QANTAS and the size of my suitcase i said ‘No thanks. I’ve got enough crap.’ I immediately realised that I probably sounded quite rude and apologised. The women thought it amusing rather than offensive and once I discovered what was in their bag of goodies I took one. Had this not been a conference around Autism where attendees were mostly quite aware of communication differences, my comment could have caused a lot of problems. The important thing to be aware of here is that, although I sounded very rude, in fact that was not my intent.

These issues come up all the time for Autistic people. I had an Aspie friend say in conversation the other day ‘I have a genius IQ’. Once again, many people might have taken this comment as extreme arrogance but actually it was meant as a statement of fact, like having blonde hair or green eyes  – a gift of nature that my friend had inherited through no effort on his part.

The reason these misunderstandings occur is usually a differences in communication styles. Non-Autistic people and Autistic people communicate in vastly different ways. The non-Autistic style is all about meaning and nuance. They communicate using more elements than we do – tone of voice, eye contact, hand gestures, body language, layers of meaning within words and other ‘hidden curriculum’ sorts of things, Autistic folks on the other hand, tend to use a more direct communication style. We communicate facts, knowledge an information. We are honest and communicate on one level. Things like sarcasm, manipulation and multiple meanings are often lost on us. There is nothing wrong with either of these styles, they are just different.

The issues seem to arise when one group interprets the other as if they were using the same style. So a non-Autistic person thinks than an Autist is communicating in a neurotypical way when they are not. This can give rise to accusations of arrogance, rudeness, stupidity and the like. Most Autistic people hate to be considered rude or arrogant, I have met only a handful of Autistic people in my life who are deliberately unpleasant. Sadly, due to these communication differences, we are often thought to be unpleasant when we are not. It is quite common to find an Autistic person agonising over some miscommunication or misunderstanding that has left them being judged or blamed. The impacts of these sorts of  misinterpretations can be wide-reaching and affect a person’s career prospects, friendships, intimate relationships, family life and many other domains.

What needs to happen is for the world to gain a little more understanding about the differences. I often liken it to different operating systems on a computer. The Windows machine if more common. Most people have them and know how they work. The Mac is less popular and a smaller percentage of people have a Mac. The operating systems are certainly different and if you expect a Mac to behave like a PC you will be disappointed but both systems are valid and have their uses. Likewise, Autistic communication is not wrong or deficient, just different. We need to boost understanding of the differences or people like me and all my Auttsic friends and colleagues will have people thinking we are horrible when in fact we are not.

I’ll finish with one thought. I am a very kind and respectful person. The idea of upsetting or offending anyone fills me with horror. I want my impact on the world to be positive. I want to help people and make their lives better. I am respectful and inclusive to a fault. The idea of hurting anyone’s feelings appalls me. So how do you suppose I feel when through no fault of my own I say something which is deemed offensive or rude simply because I communicate differently? Well if you imagine that, multiply it by the one in 100 people having a similar experience due to Autism. It might go some way to explaining why Autistic people can be overly apologetic and socially anxious. And if someone says something you think is rude or arrogant and they are on the spectrum, hold that affronted anger at their words and consider ‘is this person being rude or do they just communicate a bit differently from me?’

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A few of my favourite things….

I often hold a mirror to society in these blogs and criticise shortcomings in organisations, institutions and society. There is nothing wrong with this of course. It is a valuable function for a writer and Autism and mental health advocate to perform. I thought that this blog would be a bit different though. In this post I would like to look at things which I love, enjoy and value. I’ll write a little list…I enjoy lists

  1. My family. There’s that meme that says “I shook my family tree and all that fell out was a bunch of nuts.” In the kindest way possible, this could be said of my family, We are all a bit quirky Purky and different. This is often a good thing. My family stood by me when nobody else would, supported the broken and confused being that was me. I really appreciate that and love that I am now paying them back in joy and pride and happiness.
  2. Mr Kitty. He is filled with love and cuddles and acts like he is so lucky to have found such a hoomin mum as me. The feeling is mutual. We rescued one another.
  3. Movie night. Friends, films, Whimsy Manor and Mr Kitty come together in the most perfect evening in the world. And it happens every two weeks. Wow.
  4. Jeanette’s Autism Show  – my foray into multimedia Autistic advocacy. I love that thing so much, I get to speak to people all over the world who are just wonderful.
  5. The Internet. I can’t believe we didn’t used to have this. It’s full of lovely people who live in my phone and say nice things to me.
  6. My job and pretty much everything associated with it.
  7. Autism conferences – I get to hang out with all my friends and then get up on stage and tell jokes and occasionally get  a point across. What’s not to like??
  8. My illness. No, stay with me on this. Yes, it’s horrible and scary and makes life hard but it has also given me the opportunity to build self-awareness and understanding. Also, could you imagine a non-mentally ill Jeanette? Given my ambition and overachieving I would be absolutely unbearable. Adversity really is your friend.
  9. Alastair the MacBook Air. My little laptop friend. Reliable and attractively aerodynamic, he handles all my computing needs,
  10. All the Autism and mental health advocates who have gone before me, Big, whopping thank you!
  11. Donna Williams and her mentoring while I was writing and publishing my autobiography. I did not realise just what opportunities she opened up for me at the time but I will be eternally grateful.
  12. My motivation. I could run a country with this. Quite a large country at that! I have only once in almost nine years of full-time work woken up and thought ‘Oh, I don’t want to go to work today.’ Every other day – several thousands of them – I have leapt out of bed and enthusiastically bounced onto the bus and then into my office with a joyous smile and a positive attitude.
  13. Books – they opened up new worlds to me as a child and a new identity for myself when the first one by me came into being.
  14. My women’s group. I love it. I have met so many great friends through it. And to think, the first couple of years I missed more nights than I attended due to my mental ill heath.
  15. My peers, colleagues and friends in the Autism world.

That;s a good list of lovely things, I do try to see positives where I can. Some people might think I’m some kind of delusional Pollyanna but I’m not. I know there are sad and unpleasant things in this world of ours but I do like to focus on the good stuff. I always think that if you go through life expecting everyone will hate you and discriminate against you, that is probably what will happen. I don’t take that approach, I try to educate people who are ignorant or say ill-advised things. Sure, some of them are hostile and prejudiced but in many cases I have helped people to change their view.

I wish you all the most wonderful of good items on your own list.

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The DSM 5 Autism criteria – rewritten with neurodiversity in mind

I’m reflagging this as a couple of people asked for it at AAC …and because it’s kinda awesome!

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As you may be aware, I am currently working on a new book about Autism and mental illness. Yesterday I had to dig out the diagnostic criteria for Autism in the DSM- 5. It made me sad, so I decided to whip out my advocate brush and give it a neurodiversity-based touch-up. I hope you like it. I’m not sure how a doctor would use it but I prefer it to the original version. The way it works is that I have listed each category of the DSM -5 diagnostic criteria for Autism in italics and underneath have redrafted it. Enjoy.

A. Persistent deficits in social communication and interaction across multiple contexts, as manifested by all of the following (currently or by history):

1. Deficits in social-emotional reciprocity

2. Deficits in nonverbal communication behaviours used for social interaction

3. Deficits in developing, maintaining, and understanding relationships

Specify current severity based…

View original post 645 more words

Reflection on a conference: advocacy, community, friendship and owning my ‘me’

It is currently 10:21 pm – probably time for Jeanettes to be in bed. But I just got home after four days in Brisbane for the Asia Pacific Autism Conference (APAC) and I really feel the need to make some observations.

Some background:

I speak at quite a few conferences these days but I was unable to between 2010 and 2012 due to significant illness. Since then, things have taken off somewhat, Autism and mental health career-wise. It is still taking me a while to recognise that, as a friend put it the other day, I am something of an Autism world ‘rock star’ at the moment. I suppose people might think I like this, given my extroverted public persona, and yes, some of it is great. I never get lonely because all my lovely friends communicate with me and I get to share my good message about advocacy and empowerment with an increasingly larger audience. But in terms of the profile itself, I am very uncomfortable about it and don’t like it much at all. So I (correctly) expected the APAC conference to be a place where my increasing profile was evident. My other concern was that my workaholic ways have left me quite unwell with anxiety and related issues in the last few weeks. At one point I thought I would not even be able to come to APAC. That background of anxiety about my capacity to even be there plus worries about my profile meant that I was more apprehensive than excited about APAC.

The conference:

APAC is the biggest Autism event I have ever attended. There were around 1200 delegates, which is a lot of people. We had a welcome event the night before the conference and I caught up with so many friends, simply because so many of my autism world friends were there. I found a virtual art exhibion and was very excited to see six images of my work complete with bio (I took some pictures on my phone and heard someone say ‘Jeanette is taking pictures of her artworks!’ and then I felt self-conscious so I only have four images).

The first day of the conference there was an opening session and one of the mentors in the conference mentoring programme – which I was also part of – gave a five minute speech. I was struck by the Autistic speaker’s passion in comparison with the cool professionalism of the other speakers – mostly CEOs. Now I am friends with a couple of those CEOs so I’m not criticising them at all but it was very interesting to observe. I know a lot of the academics and professionals who were speaking and I can attest that they do care deeply about Autistic people’s empowerment and success. However, speakers who have a lived experience often seemed to come from a very deep place of passion about their subject. I enjoyed listening to both kinds of talks but I was much more moved by the ‘lived experience’ presentations.

One funny thing about the conference was that it was so big that I am sure there were people there I know well who I didn’t catch up with. A lot of people came to talk to me after both of my talks. I spoke about resilience once and employment. The audience was larger in the employment one as it was a symposium and there were less sessions clashing with it. I stood up on stage and told jokes and waved my arms about and maybe imparted a bit of knowledge but people found it really helpful  – well, they said they did! I also sold seven books so came home with a wallet brimming with cash.

Easily my favourite aspect was meeting amazing people and spending time with some of my closest of close friends. As a mentor in the APAC mentoring project I got to meet some young and not so young people and learn about their perspectives. I wouldn’t even be able to start to mention all of them here but it was just amazing. Being with so many friends and colleagues on the spectrum was as if I spent a lot of my time wearing a big itchy jumper. I long to take it off but everyone tells me my arms are ugly and disordered and I must wear the jumper. So I wear it – to the point that I almost get used to the itch, but when I attend an event like APAC (or on a smaller scale my women’s group), we all take off our itchy jumpers and delight in our arms which we know are beautiful, even if other people say they aren’t. I know that’s a bit of an iffy metaphor but I think you get the idea. At Autism events I can be me, I spent a lot of the sessions playing with fidget toys. Now I am an out loud and proud Autistic woman and I might pick up a fidget toy on a bus but I would never do that at work. My managers and colleagues aren’t at all prejudiced but I worry that they would be concerned or not understand (although I may be judging them unfairly because they are the best team in any workplace in the world – not that I’m biased). But whatever the reaction might be, my perception is the relevant bit and I feel a lot more at ease to be as wonderfully Autistic as I possibly can at events like APAC.

So I havd an amazing time. I am now unbelievably tired and need to sleep for some time. I am picking up the Kitty tomorrow. I have a new playmate for him – a very lifelike weighted, toy kitty I bought from the weighted blanket stallholders. Oh, and before I go to bed, one of the stallholders was the most amazing small business, and purveyor of Autism books, games and wonderful fidget toys, Resources at Hand. They sell books by a bunch of great authors (er, and me). Here’s their website: http://www.resourcesathand.com.au/shop/

Goodnight all…

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Me speaking this afternoon…

An odd sort of trip down memory lane

I am 41 years old these days. I have 41 years of memory, experience and personal history which have propelled me to where I am now. The funny thing about my life is that the majority of it was really unpleasant to live through but the last fifteen or so years have been much more enjoyable. This means I often get a painful twinge from a sad moment when listening to music or reading a book. This happened today.

Those who know me well will know that I spent the years from 1994 to 1999 as a prisoner (on and off). This was a loaded, awful time. I was not in such circumstances due to any evil intent. Strange as it may seem I was largely a vulnerable person who was probably more of a victim than a perpetrator, But as can happen in life, I was very troubled and unwell, my behaviour was appalling and there was nowhere suitable for me to go other than prison. While my behaviour was poor and aggressive I did not want it to be. I couldn’t articulate what was going on in my mind even to myself and I had a negative focus which meant I sought out poor outcomes and negative experiences. I could not access help because it didn’t occur to me that it would be something I wanted. Instead I did stupid things and accepted punishment as the only appropriate result. I didn’t try to make my life better and I didn’t think I deserved a better life. I expected to die in prison and I was in such a state that the thought didn’t worry me too much at all.

I suppose I was a classic case of system failure. I needed support and got blame, I needed approrpiate treatment and got the chemical straightjacket of overmedication. I needed self confidence and got abuse and violence.

My mental health issues were well documented and at one point, some person beyond my knowledge  decided I should be sent to the forensic psychiatric hospital instead of prison. I had been told by others who had been there that it was much nicer than prison. The men and women mixed together and they had nurses rather than correctional officers and you were given an incredibly generous $60 per week to buy cigarettes and other important goods. In fact the woman I was sharing a cell with – an older woman with thousands of health complaints who claimed she was about to die every time I spoke with her – convinced me that when you arrived at the hospital they gave you a bunch of things and due to this I should give her all my cigarettes. (I was pretty gullible as a young person and prisoner so parted with all my things only to find out she had tricked me.)

When I got there, the hospital it was like another world. It was the last remaining mental hearth institution in Melbourne and all the other wards were closed, so we were in a little oasis of activity in a disused, crumbling asylum. It was true that the men and women patients cohabited, like in a regular psychiatric hospital. I made friends with some of the guys – the women all seemed a bit needy. One guy, Bob, had featured in a book by gangster turned author Chopper Read. Bob was an older fellow and had been on a high dose of the anti-psychotic drug Largactyl for so long that it had turned his skin a sort of bluish-grey. Bob had killed  people in his distant past but he knew he was onto a good thing at the hospital so was compliant and well-behaved. I was  always a bit wary of the murderers though – if they did it once surely they could do it again. There was another man there whose name i forget now, some twenty years later. This man was so obviously pretending to be psychotic so he could be in the more pleasant hospital environment that it amazed me that the apparently well-trained staff couldn’t see it. This man evidently had a little but of an interest in me sexually. I was never sure if I would be safe.

One night the youngest and nicest male nurse brought along his guitar and a songbook. We sang songs until late in the evening. It was magical. I left the hospital, the prison, the desolate life I had gained for myself and was transported into a better world which had music. Music was a great joy and while I had listened to plenty of recoded music, I had not been a part of making noises – joyful or otherwise – for a long time. One of the songs we sang was the blues standard and frequent avourite of prisoners, The Midnight Special. We sang it a few times. I was taken to a place beyond where I was, beyond who I was. I saw a life I had forgotten existed – a place of creativity and transcendence. The experience stayed with me for a long time and gave me hope. I didn’t stay at the hospital for much longer though. I was self-destructive and aggressive and before too long me and the man pretending to be unwell were on the hard metal van back to our respective penitentiaries.

A couple of years later I did get the assistance I needed and started to change my life. The years of prison and desperation faded into a memory and were almost forgotten. I became somebody who exudes respectability and success. I wrote books, gained degrees, spoke at all manner of conferences, got an amazing professional job and bought a home. People now seek my advice on how they can assist their children and relatives who experience the things I did as a twenty something. My criminal past is confined to another time. If I think of it, I am remembering events and thoughts, not the depth of feelings.

Today I was writing an article and I put on a singer songwriter playlist. Right at the end I heard the familiar start of that song from all those years ago in a different place, The Midnight Special. I stopped writing and listened intently with everything I had. As I had been transported to a better world when I sang the song, I was transported back in time this afternoon. There I was, suspended over history looking at my younger self who I have spent so long banishing and replacing with the more successful, respectable me of now. Today I could have reached out my hand to hers. I imagined myself telling her that it would be OK, things would change, there would be work and friends and cats. Her life would not always be filled with self-defeating behaviour, invalidation and violence, The world gets better.

I listened to the song three times. I felt so grateful to get to meet that past me. And yes, the reason I spend thousands of hours each year on supporting other people, listening, providing advice, writing books and speaking at conferences. The reason I am available to those who need me when it may be against my interests to do so, the high value I place on of community service and kindness all comes from those days where I did nothing useful for anyone. Where in fact I was aggressive, dependent, demanding and difficult. Those days have made me who I am. I suppose I am thankful to my previous self but I am glad I can hold her and tell her it will actually be OK.

Your past meme