Medication and performance – or where did my work mojo go?

I take a medication called Clozapine. As medications go it is a case of ‘this is serious mum – REALLY serious!’. Three of the potential side effects are life threatening and so I have to have regular blood tests, ECGs and Echocardiograms to be able to keep taking the meds. When I started on the medication in 2020 it needed to be done in hospital as an impatient and took over three months to titrate up to an effective dose. Clozapine is the medication of choice for treatment resistant schizophrenia. It is a wonderful medication, and I have not been unwell since I went on it.

However, clozapine is a pharmaceutical friend which comes with some major strings attached. One of these is it effect on my brain, and particularly the ability for my brain to remember things and manage lots of things at the same time.

In 2007 I joined the public service. I am intelligent and the work was engaging. I never had any worries around performance. Quite the opposite in fact. One of my managers told me I would be able to do any job in the department if I put my mind to it. Flash forward to 2023 and I was unable to do even a mid-level role in the public service. I struggled to do what was expected of me. Unfortunately, at the time I didn’t have very understanding managers so life at work was very unpleasant and I quit.

Up until recently I thought the issue in my public service role was solely my managers but looking back I realise that my performance actually was pretty patchy. I didn’t understand this at the time as I had no real insight into my work. I has never been an underperformer in the past so why I should I be now?

The realisation about the impact of my meds on my work only really sank in this week after I had to quit a job that I absolutely loved, mostly because I couldn’t keep up with the conflicting priorities and need to know who lots of people are and what they do. When I first realised this, I went into a bit of a panic as I thought maybe I won’t be able to work anywhere again.

Actually, I don’t think that is true. The three jobs I have left because of this issue have all been roles where there were loads of small elements which needed tracking and prioritising. When I have work which I can do one thing at a time, I seem to be OK. So my academic work is not too challenging, and my support worker work is also OK. It is a bit of a rude shock though, the idea that maybe the issue will worsen, and I won’t be able to work at all. I am defined by my work. My work is what makes me who I am. I love to work, so much so that I have to force myself take weekends!

I guess it is a sobering kind of thing. I am someone with schizophrenia with a large profile and a CV that would rival most senior managers. I am considered brilliant and competent. Authors frequently get their publishers to ask me to provide an endorsement for their books. I am a brand. I am sought after all over the world and strangers regularly come up to me and say how wonderful my work is. I have always had a sort of dystopian Yennski career nightmare. It involves me being old, chronically unwell and in psychiatric hospital and saying to the nurses that I used to write books and them not believing me at all and saying, ‘that’s nice sweetie.’ Being unable to work is probably the closest fear I have to my fear of death – which is significant! I mean imagine a world without Yennski Horrible!!

My various disability conditions haven’t posed much of a threat to my employability for many years and having them do so now does not fill me with joy I must say! But I guess it helps to view myself as vulnerable and for there to be the possibility of limitations on what I do now and into the future. It also helps me to appreciate how well I have done thus far. A lot of other people with schizophrenia can’t work at all or spend lots of their lives unable to be part to the workforce. I used to be one of them, then I wasn’t and maybe possibly I will again in the future, I don’t know – and uncertainty is not my friend.

I am not quite sure how I should approach this. I tend to be pretty competitive in my attitudes around being me so maybe I should turn this into a competition – see how long I can continue working for, how many suitable roles I can find, whether I can actually improve matters, maybe how philosophical and accepting I can be about the whole situation!

I don’t have any solution to this at all. No nifty little Yennski pearl of wisdom, no free, unsolicited advice! I guess just embrace the uncertainty and aim to be the best Yenn I can be regardless of what I can or can’t do jobs-wise. And cuddle Sunflower too of course. There isn’t much that the world can throw at me that can’t be solved with some cuddles with a purring Sunflower the kitty.

‘Nobody gets out of here alive!’ – The unexpected positives of thinking about mortality

The title of this post is a quote from 1960s band The Doors’ lead singer Jim Morrison – who proved himself correct shortly after making this statement by dying at the age of 27!

Why is Yennski thinking about death, you might ask? It isn’t a very edifying topic – kinda morbid and sad. But Jim Morrison was absolutely correct, every single one of us has a limited time on this planet.

I have heard of some young people in recent years who basically give up before they start in life, not engaging in study or work or seeking relationships and connections, overwhelmed by the fact that we are all going to die and particularly in relation to concern around climate change. I actually wonder why this is not an approach taken by more people. It is sort of logical in a depressing way.

For me, I am ambitious, motivated and want to change the world as much as I can – which admittedly probably isn’t a lot! So why am I presumably getting negative and morbid?

Well, there are a few things. The first one is that I am now 51. I mean a lot of people are older than that, but my physical and mental health seem to be deteriorating at an alarming rate lately. My grandmother lived to be over 100 and I used to want to follow in her footsteps but now that I am in constant pain from my arthritis and I have less energy and other health things go wrong that maybe being around for another fifty years might no longer be an aspiration! I should confirm I am very happy to stick around and deal with my health issues – please don’t call the crisis team on my behalf! Health issues aside, I am happier at the moment than I have been in a long time – I’m just happy but in pain!

The other thing which has happened has been a greater tolerance of the idea of my own mortality. Those who follow my work may have noticed that I have a pretty strong sense of who I am. I am very present and very grounded – these are probably positive qualities, but they mean I have always struggled with the idea of my own death. Now I think I am maturing and moving beyond that – I no longer avoid the topic and reflect that the point of my being here to make a difference. I feel that my every act should relate to leaving a positive legacy. I realised that I want to leave the world a little better off for my being in it when the time comes for me to say goodbye.

And finally, I have a recent / current thing which is making me consider these issues more closely. It is probably nothing to worry about but last week I got a call back form breast screen after a routine mammogram. I have to go back and have more thorough screening – so either there is something to worry about or not. I guess I will find out at the appointment or shortly afterwards. To use the late great author Terry Practhett’s term, if anything iffy shows up it will be an ‘embuggerance’! I am crossing everything – including Sunflower’s sweet little furry paws – that I am OK, but I honestly don’t know. I am not as freaked out as I was. If something shows up, I will manage it, but it has certainly got my train of thought going down some difficult metaphorical tunnels!

However, amidst all the stress and fear of potential doom I realised something pretty cool – actually a couple of somethings. The first is, thinking about my death possibly happening sooner that I would have expected puts everything else into perspective! Not much point worrying over petty things! Secondly, I thought to myself ‘what do I need to do before I die’ and the answer was nothing. I has done everything I need and want to do. I have turned my life around to go from very desperate drug addict and prisoner who couldn’t hold a job and spent time homeless to being an author, presenter and all round rocker of casbahs. I have an amazing house, my friends are all amazing people who I love, I have a great relationship with my family members after some difficult years, I have meaningful work – including the best job I have ever had (my role as Deputy CEO External Relations at the Disability Leadership Institute). As such I am happy to go whenever my time comes. I have no regrets. I am not sure I know anyone else in a similar situation. I think those two positives probably outweigh any stress and unpleasantness and uncertainty! ….And if my tests come back OK, I will be throwing a party!

25 years on – or the other thing that nobody believes about me

Last week I was advised that my working with Children Check in Victoria had been approved. For most people this would be a formality and not cause for anxiety or stress but not me. What\ever I apply for these sorts of things – and as a former career public servant this has occurred quite frequently – I am filled with dread, self-doubt and judgement and blame. Why? Well, the Yennski police history has more things on it than it should (as more than zero!) Between 1994 and 1999 I was a criminal. A real one involving lot of prison and whatnot. There are tow things people don’t believe about me – my age and my criminal history. I can absolutely guarantee that I am fifty and when I was 20-25 I was involved in criminal activities. I have a book about it! (the criminal activities not the age. I don’t think anyone would buy a book about my age!)

I am certainly not proud of this part of my life. My last conviction was in September 1999, and I have not so much as jaywalked since then. In 1999 I turned 25. I had seen a lot nastier stuff in my youth than most people my age. I got involved in drugs and crime due to a partner who was older than me and very dangerous. By the time I worked out just HOW dangerous I knew I was in too deep and knew his plans and feared for my safety should I leave, so I went along with him. I was arrested with him for a robbery and spent six months in jail. After I was released, I was so damaged and traumatised. I had spent six months as an autistic prisoner, trying to work out what criminals expected – and particularly what made them angry! I masked at an Oscar-winning level and the whole situation resulted in me feeling the need to self-medicate with various drugs.

The drug use was pretty intense and after less than a year I was very unwell with what would shortly be diagnosed as schizophrenia. I have the same diagnosis 30 years later and have taken some pretty brutal medications for that entire 30 years and will probably take them for the rest of my life. I spent the next four years in and out of institutions – prisons and hospital – and my life was unliveable. In 1999 things had started to shift in my mind. I decided that a new millennium should equal a new life for me. When I was released in February 2000, I had worked out that I didn’t want an institutional life anymore and that things needed to change,

In 2001 I was living in mental health residential care. I. lived in a very nice suburb and saw people down the street who clearly had very good jobs. I realised that maybe I could one day have a job and a mortgage and a suit! Within eight years I had all those things. Yup, go Yennski!!

I try to remember my early life when I meet people who are struggling with their own. I have gone from being a desperate prisoner with no money, no job and no education – and for a while no home – to being a ridiculous over-achiever with a mortgage, lots of art, qualifications, a good work history – and a very good cat! Yesterday I was in Civic and there was an older person using a walker with a very skinny dog. I am pretty sure they were homeless. I regret to say that I tried to keep my distance but then the person called out that they liked my tattoos. So, I ended up having a lovely conversation with them and met their dog – whose name was Honey (‘honey by name honey by nature’ apparently).

While it is really easy to judge and assume, especially with people who look a bit ‘iffy.’ But even people who are ‘iffy’ are deserving of respect and kindness. And maybe that ‘iffy’ person – the prisoner the addict, the homeless person – is not deserving of judgement and assumptions but instead for kindness, love and support. Those attributes demonstrated by people in my own life were the main reason I am where I am now – and that I am even around at all! I don’t mean that all people involved in the criminal justice system or who are homeless or dependent on drugs should write a bunch of books and give two TEDx talks and win awards of course! What I mean is that how we treat people – our judgements and assumptions as well as our kindness and inclusion – can make a big difference in their lives. In my life the main people doing the loving and kindness were my parents. Anyone who knows my parents knows that they are the best and they saved my life – or enabled me to save my own life anyway!

I am grateful for the support I have received, and I am also grateful for my ability to let go of blame and that I try to avoid doing a lot of judging and assuming – about others or myself. So, 25 years ago my life was very different indeed and now I have mostly a very good and satisfying life. Big Yennski yay to that! And if my twenty-something self met me now, well I suspect that would be rather surprised!! Although actually they would probably ask me for money!

All the same and a little bit different – my problem with intelligence

I just had my Sunday NDIS worker come over. I have had her every Sunday for almost two years. She takes me to the laundromat and then grocery shopping. I love this worker, and we get along very well. Today she said something which got me thinking. Apparently, the other NDIS support workers in her office say they don’t want to work with me because I am too intelligent an accomplished and they feel they can’t make conversation with me. This came as a bit of a surprise and a disappointment. I certainly don’t want to intimidate people out of wanting to work with me!

This got me thinking about intelligence and why I don’t really like it as a concept. I want to unpack thoughts on intelligence – whatever that means – and viewing other people through the lens of a hierarchy with some people apparently ‘better’ or ‘more’ or whatever. I have had this issue in the past and it is strange. Firstly, yes, I am accomplished in the transitional sense of the word. I am definitely an overachiever too. However, this is not really all that meaningful in terms of my character or how I experience life. I would rather be kind, respectful and inclusive and able to navigate life with minimal stress and mental health dramas if I was picking personal tributes than intelligent and accomplished!

The whole concept of intelligence is highly fraught as well. It is measured through some unhelpful and confusing methods like IQ tests. ‘Intelligence’ is a loaded and often weaponised term used against people deemed to have ‘low’ intelligence. Intelligence, like disability, is one of those things that is measured as a deviation from a ‘norm’ of being human and as such often results in ableism and discrimination. Plus, it is largely meaningless.

I always think that IQ tests, exams and job interviews are similar in that they only really measure proficiency at the test itself. If you test as having a high IQ then you probably do but if you test as having a low IQ it doesn’t necessarily mean you have a ‘lower’ level of intellect, just that IQ tests are not your ‘thing’! IQ tests are often culturally biased and gendered as well so if you are a white cis gender man you are likely to score higher than others. The whole thing is unhelpful and ableist and when it comes down to it intellect is a poor measure of a person anyway!

I am sad that my previous NDIS workers don’t want to have me on their books due to my intellect and accomplishments. I really am. I never go into a conversation or relationship reflecting on those characteristics and to me it is just being me. I don’t wander around reflecting on how intelligent I am or how accomplished I am. As I mentioned, these things are part of me but they don’t make me better or worse than anyone else. My life can be extremely stressful, and I can struggle to get through every day. My accomplishments don’t really stop that happening. Intellect is a fraught notion along with success and accomplishment. It is better I think to focus more on a person’s character and personality as a measure of their character – or just to respond to people as you find them.

I want to finish with a story from a friend who passed away a couple of years back. This friend ran an organisation supporting non-speech communication. People – usually children – who did not use verbal speech, attended this service. My friend worked with a lot of kids who didn’t speak and who had been given a very low IQ score. However, when my friend re-tested these kids using an assessment tool designed for non-speakers, not only did the kids often score an average IQ but many of them scored above average or very high. This illustrates the issues with IQ tests and the concept of intelligence. How many other kids and adults miss out on accessing what life has to offer due to a test which isn’t tailored to their needs and as such doesn’t accurately measure what it intended to measure – and then what is being measured if not meaningful or helpful? Be very careful when thinking and talking about intellect. It is a concept which is frequently based in a deep level of ableism and is more often than not quite meaningless, not to mention damaging.