Few people know that I am a guardian for my beautiful, gentle, and very broken youngest brother.
He turned 41 yesterday, in the throes of the fourth Victorian lockdown, at the Austin Hospital in Melbourne, where he has lived in the Secure Extended Care Unit for 15 years.
He is profoundly disabled and has spent most of his adult life side-lined by a debilitating mental illness that completely changed the course of his life, and my family of origin’s, at its onset in 1994 when he was aged just 14.
For context, my brother started out as a normal kid, whatever that means relative to normalcy as you define it. But relative to population, he actually started out with the 1%-ers, given he had open access to the early privilege of familial support, financial stability and private education.
And from an early age, he was clearly highly intelligent, super talented at sport, and born the youngest of six siblings into a family that ate together, hung out together, holidayed together, and had each others’ back.
But as a teenager, that course took a sudden right turn, when my brother developed symptoms of depression and then psychosis, which sent him spinning like a pinball through the Victorian mental health system for the past 26 years, beset by schizo-affective disorder and a super rare condition called Neuroleptic Malignant Syndrome – a life-threatening idiosyncratic reaction to antipsychotic drugs characterised by fever, altered mental status, muscle rigidity, and autonomic dysfunction.
It’s a pretty long and chequered history that doesn’t bear drawing out here, but which has had my beautiful brother in and out of critical care in ICU, seclusion rooms, subjected to clinical drug trials and a revolving door of psychiatrists and carers in the Victorian private and public mental health system over the many years of his super-shit journey.
To be perfectly honest, I don’t know how he has endured.
How we all have, in a way.
My siblings and I still wonder at the fated hand of why he was dealt this blow, instead of one of us.
But if life is a random and repeated series of drawing straws, I reckon my brother has somehow drawn the shortest in the pack, time and again. His illness is drug resistant. It is pretty much incurable. He is now very institutionalised. As a human, he is blanketed entirely by his disease. And his mental illness remains persistent and degenerative, which means he has little respite from symptoms.
So all we can do, as a family, is try and look for the somehow silver-ish linings, the cracks that let the light in, despite the obvious dark.
We know that even though he carries a pretty heavy burden of illness day to day, there are so many others who also suffer from chronic mental illness and ultimately end up homeless or estranged from their families of origin due to the ongoing strain of their mental illness on family dynamics or relations.
We also know that my brother is at least fortunate in that we still have his back: we’re a family who love him, support him and advocate for him, who have negotiated an NDIS package which means he has allied health services such as music and occupational therapy, and he can go on outings into community with qualified carers so he can participate in life outside the four walls of the ward.
We figure it’s our job to do what we can with what we have, when we can, so we bolt in medical, allied health and community access services wherever we can to give him the best quality of life we can.
But it’s not much of a life to be honest. Not compared to the life track he was on. We worked out like many others though, that comparisons and regrets and running back and asking ‘why’ serve no end when someone you love is suddenly blown apart by mental illness.
You have to just find a way to accept its presence, bend to its course, and celebrate the small things.
I remember in his early tumultuous years post-diagnosis, our family reeling and scrambling to work out what was going on with him, when he was just a boy, and my Mum and Dad desperately running back down the roads of their parenting, looking for signs, for something, for anything, some kind of flag to show that this was coming. Spoiler alert: there was none.
I also remember trying to desperately make sense of him, his illness, work out the supports we could access, and the mental health system itself, so we could get him the help he needed, at the acute points of his illness before it spun up into a crisis.
So it’s why I was particularly personally interested in this conversation I had recently with Dr Paul Denborough on Human Cogs. Listen here.
Dr Denborough is a Director at the Alfred Hospital and Headspace Australia, a specialist in anorexia treatment, and mental health expert who has worked with thousands of adolescents, young people and their families over decades.
He is also one of the psychiatrists who provided key recommendations for the Royal Commission into Victoria’s Mental Health System which was tabled in a special sitting of the Victorian Parliament in March 2021.
This landmark final report into Victoria’s Mental Health System outlines changes to create a future mental health and wellbeing system that provides holistic treatment, care and support for all – and a system that is finally co-designed by those who have lived experience of mental illness, so the services have the community, families and ‘consumers’ (like my brother) at the centre of it.
The Victorian government has since committed $AUD1 billion to implement the reforms recommended by Dr Denborough and others.
Outside of his work on the Royal Commission and day to day practice, Dr Denborough also helped establish Discovery College – which creates and runs courses on mental health, recovery and well-being, and helps people come together to learn from each other, share experiences and reach new understandings of mental health.
In this conversation with Dr Denborough, we talk about the missing middle in the mental health system, why early intervention is so critical to recovery, and why he believes seeing the person – not the illness – is a more humanist, compassionate and personalised care model that should be available to all who are struggling with complex mental health challenges.
While he does admit mental health crises and the pressures on professionals have skyrocketed during the COVID-19 pandemic, and we are currently seeing a mental health tsunami as a direct result of the early 2020 bushfires, pandemic and the increased conversations around sexual assault, Dr Denborough ultimately has faith that we are moving toward a mental health and care model that has humans at its very heart.
I, my family – and my brother – welcome these long-needed changes, to finally plug the holes in the system, fill the funding gaps, and bring a more human-centered mental health care model into the spotlight, where it has long needed to be.
A warning that this episode covers some heavy topics and themes. If you or anyone you know needs help you can call Lifeline on 13 11 14.
Hosts: Madeleine Grummet and Sabina Read
Guest: Dr Paul Denborough
Technical Producer: Daryl Missen at Purple Wax
Join us on instagram at human.cogs
Available on Apple, Stitcher, Spotify, Google Podcasts or listen via our website.
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