Suffering from mental health


The term ‘mental illness’ excites confused passions. The title of this post was expressed by a friend talking about their brother. He was “suffering from mental health.” I knew what she meant, but it was what she said that struck me. I had heard it several times before – but always under circumstances when it was wisest to let it pass, and say nothing. 

We can talk easily about a person living with, or experiencing, what is popularly called ‘mental illness’. But when we are referring to somebody with whom we have intimacy or familiarity things change. Suddenly saying they have a ‘mental illness’ is hard to say.

I was recently talking via email to a friend diagnosed with a psychiatric disorder about a person he was interacting with. He observed “Yep. Dude’s got some issues, but haven’t we all?” My friend may have a diagnosable condition, but ill? No. 

Personally, I detest the term ‘mental illness’. I worked in psychiatric hospitals back in the early 1970s and I have worked with the operators of what were called ‘licensed boarding houses’ before the NDIS. Many of their residents had long term psychiatric conditions controlled by medication. I don’t like the term because it bundles up a spectrum that covers damaged brains, the victims of trauma, and people who are highly sensitive. The idea that the term ‘mental’ covers all is archaic and cruel.

I am not qualified in psychiatry or psychology, so I want to make it clear that what follows is a philosophical musing on the idea of ‘mental illness’. It mustn’t be mistaken for anything other than a personal opinion offered by a person who has had a lot to do with people diagnosed as having a ‘mental illness’.

What are we talking about?

Three of the smartest people I know would fit the category of having a ‘mental illness’. How does that work? The term implies a cognitive disorder. But these are super smart people. What they have difficulty with is processing emotions. Well, except for one – the one I quoted above. He just has experiences that psychiatry has decided are evidence of a disorder.

I am not going to debate whether such experiences are a disorder to the extent that he is rendered dysfunctional. But certainly, the diagnosis and subsequent treatment achieved that. In the time I have known him [a decade or so] he has been somewhat eccentric. But not once has he indicated disordered thought. Even we if grant his experiences are disordered, there’s a difference between the experience and his reaction – and it’s his reaction to his experiences that got him into bother – and that a long time ago now. These days you wouldn’t know. You might think he’s a bit eccentric, but nothing else. In fact you’d be hard pressed to meet a nicer, kinder, more honest guy – and with a razor sharp intellect.

Trauma can do a potently destructive job on our ability to manage our emotions. The harm done by the trauma is an enduring wound. We are now learning that our response to that wound does not have to be reflexive. We can learn to manage it.

When I was in 6th grade my music teacher insisted that I audition for the school choir. I politely explained that I had no interest in participating in the choir and so declined to audition. She insisted I audition, and I persisted in declining to do so on the obvious logic it would have no consequence – being in the choir was a voluntary after school activity and I had better things to do.

So, I was hauled to the front of the class. We had an escalating scene of her demanding I sing and me declining to do so. Eventually she was screaming, “Sing!” at me, repeatedly. I refused. She finally quit, but the damage was done. I haven’t sung since then, and when people have urged me to sing, they trigger that traumatic memory. It’s a curable condition, of course. I just haven’t felt the motivation to seek the cure.

Not singing does not make me dysfunctional in most aspects of my life. In fact, it’s a fair guess it’s less than 1%. But it’s still an ‘illness’ in the sense that it’s an enduring unhealed wound that continues to impinge on my life experience. The trauma is easy to recall.

I can see that for some my trauma is a ‘mental’ dysfunction that could be overcome by reframing or reprocessing my experience. But it’s my emotional reaction that is the issue, not how I think about it. Intellectually I have tackled the experience – but the wound, the trauma, is emotional, and it persists.

I am of a generation who grew up to dismiss emotions as weak reactions expressed by children and women – irrational essentially – an abdication of mental responsibility. That point of view is, of course, utter nonsense. You will not find it in contemporary psychology. Males expressed emotions only under tightly controlled and approved conditions.

The idea that it is feelings and not thoughts that mess us up is relatively novel. I should here observe that I do think that thoughts can be a problem, but that takes us into the profoundly complex business of the nature of belief – and this is no place for that conversation.

My point is, in essence, that its emotions that trip most of us up. Serious psychiatric conditions like schizophrenia or psychosis are rare in our workplaces. Whether they are ‘mental illnesses’, or brain disorders depends on whether you subscribe to the mind = brain proposition. I don’t. This is important because there’s nothing more futile than arguing at cross purposes because you have failed to agree on terminology.

I suspect that saying a person is “suffering from mental health” is an intuitive disagreement with the mind = brain idea, but without confident awareness. I think what is labelled ‘mental illness’ is mostly some form of emotional trauma – and hence something many of us know to some degree. 

The upshot is that we struggle to understand what our terminology means and what the implications of our meanings are. This is made worse by an horrendous history of madness woven into our culture’s worst fears. For us ‘mental illness’ is not a somewhat vague technical term – it is burdened and tainted by movies and scary stories. The reality is deeply different.

Does it matter?

I want to suppose there is a valid thing called ‘mental illness’. I don’t know whether this is true, but I am not committed to saying it’s not. It’s at most a philosophical question. If you believe the mind = brain proposition you will have a philosophical position that differs from those who do not. Let’s allow it is a reasonable position to hold.

There is a considerable difference between a ‘mental illness’ and emotional responses triggered and shaped by trauma and stress. The latter is commonplace. 

Here are two dot points from

  • Over 2 in 5 (44%, or 8.6 million) Australians aged 16–85 are estimated to have experienced a mental disorder at some time in their life, with 1 in 5 (21%, or 4.2 million) having experienced a mental disorder in the previous 12 months.
  • Anxiety disorders (such as Social Phobia) are the most common type of disorder, affecting 1 in 6 (17%, or 3.3 million) Australians, followed by Affective disorders (such as Depressive Episode) (8%), and Substance Use disorders (such as Alcohol Dependence) (3.%).

There is an obvious association of ‘mental’ disorders with what seem to me to be essentially emotional responses to life experiences – maybe precipitated by stress or trauma. Substitute ‘emotional’ for ‘mental’ in the above and see how it sits with you.

How we interpret this data matters precisely because we all experience stress, and many experience trauma to varying degrees of intensity. In recent times what is called Complex Post Traumatic Stress Disorder [C-PTSD] has been recognised as something that can be experienced over the long term as the result of abuse [emotional, physical, or sexual] in childhood, or domestic violence. In other words, from ordinary life experience to many.

I don’t want to pathologize our normality, I merely want to make the point many readers will instantly recognise – a lot of bad behaviour by people who have admitted no formal diagnosis may be the result of C-PTSD and just accepted as ‘normal’ because that’s our experience of the world. I think back to that music teacher and wonder why she thought screaming “Sing!” at a child was okay. Why the intimidating powerplay to bully an 11-year-old into doing what she wanted? Why wasn’t she cool and take my disinterest in her stride. Why did she care so much?

I can tell you my side – why I stood up to her. My father was a bully, and violent at times. I stood up to him to survive. My default with the music teacher was to resist. Maybe I should have acquiesced, auditioned and just either sung badly or just not turned up. That would have been better for me, maybe. But I was on survival autopilot. What was her excuse?

We are all in this together

We all have unhealed wounds and sometimes they overwhelm us. If we understand that beyond the awful label of ‘mental illness’ there are people just like us whose ability to manage reactions sometimes needs the help of medication or therapy, we might be more considerate and compassionate – but then we’d need to look at ourselves with kinder eyes – and that isn’t easy to do with deep honesty.

The label of ‘mental illness’ has been burdened with a stigma it does not deserve. Yes, there are extreme manifestations of profound psychological dysfunction that, I grant you, are confronting to engage with – but they are rare, and it is unlikely you’ll ever come across them in a workplace.

To be blunt, the worst accounts of disordered conduct often concern those who declare no diagnosis and are frequently managers. Now, I am not suggesting for a moment that they deserve sanctions. I am merely making the point that from the perspective of staff the most problematic conduct is exhibited by managers who are not only not challenged by their managers but who are the most discriminatory in relation to staff who disclose they have been diagnosed with a ‘mental illness.’

A former colleague told me of a manager who routinely screamed at, and verbally abused, staff. Yet their conduct, of which senior managers were aware, remained unchecked. You’d want to guess there’s an undiagnosed, or unadmitted condition here. Maybe the manager feared that ‘disclosure’, despite the evidence, may have triggered an undesired response.

It is astonishing how often people with a diagnosed condition are discriminated against despite no untoward behaviour or disordered thought when they ‘disclose’ their condition. And yet people whose conduct is erratic or abusive are left alone. Something does seem to happen when there is ‘disclosure’ – the stigma is aroused, and harm is done.


Before I withdrew from fulltime employment, I set up a campaign to ‘Change the Conversation’ about ‘mental illness’. It gained a bit of traction, but it dissolved into the pool of normal. Some folk ‘got’ it but a lot more felt uncomfortable challenging the psychiatric orthodoxy.

The fact is that this is a philosophical question, not a science question. We all make metaphysical guesses about how we imagine reality works. Science does an impressive job on the detail- up to a point, but interpretation on the human level is still free territory. There is a difference between disagreeing and bullying – and there’s too much of the latter, swaddled in a generous covering of bluff.

When you find yourself saying a person is “suffering from mental health” it’s time to wonder what the hell you intended to mean. Clearly its not to suggest that person is ‘mentally ill’, because that’s easy to say. Obviously, something else is going on.

Ill or injured? A fellow traveller carrying a heavier burden of life experiences than many of us, or an alien in our midst? There should be nothing alienating about extreme expressions of the spectrum of being human. For some the injury of trauma is something they must live with and function well in the ‘normal’ world.

I hope this post inspires you to think more deeply about this taint of stigma we allow to be so cruelly imposed. There is, I think, no settled uniform popular position. This is an evolving field of thought and I encourage you to explore it. We must prefer the side of compassion and inclusion over distance and exclusion. The fear is unfounded. It stems from a lack of understanding, and maybe the want of an honest self-reflection on how wounded we are – and yet we behave as well as we can.

Below is a list of resources I have used in recent times. As always, I use Amazon links because of access to ebooks and audiobooks which are more accessible to many. If you are buying hardcopy do support your local bookstore.

The Body Keeps the Score – Bessel van der Kolk – This is a compelling exploration of trauma.

Desperate Remedies – Andrew Scull – This is a look at the history of psychiatry and the problematic place it is now in.

The Myth of Normal: Trauma, Illness & Healing in a Toxic Culture – 

Gabor Maté , Daniel Maté – The title says it all.

In the Realm of Hungry Ghosts: Close Encounters with Addiction – Gabor Maté – An exploration of what triggers addictive behaviours – trauma mostly.

The joys of text to voice


I have had a heap of legislation and policy documents to read recently, and I was suffering. Then I had a sudden flash of belated enlightenment – use the text to voice function. I did and it was transformative. 

The benefits

Spending hours in front of a screen is necessary when I am doing research, but it does me in. GBS has left me in need of literally putting my feet up several times a day. My poor grip means that hard copy is a hassle, so electronic softcopy is the only option, and reading posture is different.

With text to voice I can put my feet up and keep reading.

Legislation and policy documents are not a literary genre known to keep you on the edge of your seat – unless you are comatose and about to slip inelegantly onto the floor. With text to voice you can read along with the voice. This improves focus during those difficult bits [often the whole document] and so aids retention of content.

Even at its least effective you get a really decent sense of the document while eyeballing the ceiling. I take notes on my iPhone for follow up – phrases to search rather than my own notes.

The result is that I am able to go through a lot of information quickly, use search phrases to tag follow up, and maintain my focus while resting when I need to. 

How to make it happen

I use Mac, so PDFs are read in Preview. Finding text to voice is straight-forward – select text, hit Edit, go to Speech. Also see

For Windows systems see

Listening methods

I have moved away from in ear and over ear headsets because they are either fiddly, lose power or are invasive.

I have gone to bone induction. A blind friend put on to Aftershokz’s Open Com – see

I put my set on at 8.30 this morning and its now 18:37, and after a full day of switching between podcasts, phone calls, a Teams meeting and listening to documents the Aftershokz are at 60% battery life.

Best of all there’s nothing in or over my ears.  They stay in place all day without hassles and with no risk of falling off. Having something in or over my ears most of the day can disorientate me, and this can, strangely, adversely impact my sense of balance. Because the bone conduction headset doesn’t impede my hearing, I don’t have the same feeling. The sound producers sit in front of my ears.


Being able to listen to documents has been a huge advantage, allowing me to rest while working and focus with greater clarity when I need to.

I mention the bone conduction headset because, as I walk with Canadian crutches, I can’t respond to a phone call without finding some place to sit or lean unless I have a headset in or over my ear. But walking with anything in or over my ear impedes my hearing to some degree, and there’s a safety issue there. I can’t move fast to get out of the way of a danger, so reducing my hearing is not a great thing to do. I need to be as alert as I can.

Disability in Bali – Linda needs your help


I am not a fan of the tropics. I’d rather go to Antarctica than Bali, though I suspect accessibility might be an issue there – do Canadian crutches [despite their name] and ice go together?

A few weeks ago I received an email from Bali – from Linda – a friend and associate I thought I had lost contact with. I had left a message on her Facebook page so long ago that I had forgotten. She likes Facebook as much as me, so years later she gets around to updating – and sends me an email.

Some background 

We worked together back in the late 1990s up in the Northern Rivers region of New South Wales writing grant applications and delivering government funded projects when we were successful – which was often. We were a pretty good team and kicked some major goals. Linda’s career morphed into working on international aid projects, and I moved south to Katoomba to join NSW Department of Ageing Disability and Home Care. On one of Linda’s aid projects she contracted Haemorrhagic Dengue Fever in Vietnam around the time I got GBS in Katoomba. She was left with a debilitating poly-arthritic disease that created mobility issues as a complication of her Dengue Fever. Linda went to India in search of a cure and found it. It’s a wild story, worthy of a book or movie. 

She lives in India most of her time these days, but still travels doing humanitarian work. She returns to Australia regularly to visit family.

Disability support in Bali

For the past 12 years, Linda has been supporting a non-for-profit organisation in Bali called Yayasan Penduli Kemanusiaan (YPK) Bali, founded in 2001. Linda tells me a rough translation of the name is ‘humanitarian care foundation’. Bali doesn’t have a National Disability Insurance Scheme [NDIS] or even strong legislation to support people with a disability, so people living with a disability rely on…well YPK Bali and similar organisations. That’s it. To date, YPK has helped 5,234 people with physical disabilities, and has conducted 59,950 hearing checks. The organisation survives on volunteers, and grants in an increasingly constrained pool of opportunities. It does astonishingly well with what it can pull in, but it’s a constant struggle, and it shouldn’t be.

Bali’s population is around 4.36 million. In Australia the prevalence of disability in the community has been estimated at 1 in 6 or 1 in 5. I don’t know what would be a fair figure for Bali, but for the sake of this argument I will propose 1 in 10 to make my point. That’s 436,000 people – not all of whom will require support or services. Let’s say only 25% do – that’s 109,000 people, but if the number is only 10% that’s still 43,600 people. YPK is one of only a handful of services supporting people with disability. 

YPK was set up by Purnawan Budisetia, who is regarded as the father and leader of the organisation. He sadly died September 2022, leaving a gulf in skills in international networking and fundraising. Linda is the senior consultant, working pro bono for YPK. She is the only westerner, and the only one who can write grant applications and provide marketing strategies for YPK to help it continue to raise the funds that it needs to continue its work. The difference between Balinese culture and the European culture [the source of grants] is significant and this makes grant application writing a major challenge.

What YPK Bali achieves on what, for most of us the smell of an oily rag, is remarkable. For younger readers that image may be unfamiliar, but it’s the difference between a can of petrol and just the fumes. YPK Bali operates on the equivalent of less than USD$186,000 [AUD$282,000] a year. With modest resource it employs 23 staff, and provides equipment and services for rehabilitation, education programs, a mobile rehab clinic to villages, hearing testing for ALL children, and transport for clients to the YPK centre. That’s stretching limited resources impressively.

Why supporting YPK is a smart thing

You may wonder why I would think supporting a disability org in Bali is a good idea when I have been banging on about the lack of movement at home in Australia. Don’t get me wrong. I think supporting YPK has self-evident merit, but it can be a win-win as well. Sometimes taking attention away from ourselves helps our cause.

The contrast between Bali and Australia is telling in several important ways. The currency conversion is, at the moment, AUD$1.00 to 10,241.00 Indonesian Rupiah. When you can divide a dollar into more than 10,000 parts that suggests you can ‘get a lot of Balinese bang for your Aussie buck’. YPK’s annual budget of around USD$186,000 [AUD$282,000] is next to nothing in our terms. That’s around 10 NDIS clients [give or take]. YPK had 222 active clients in February. That’s as well as an education centre [120 kids in February 2023] and a mobile outreach [106 clients in February 2023]. 

Indonesia has a population of 275.40 million [2022] and a GDP of USD $1.186T. In contrast the GDP of Australia is USD $1.553T, with a population of 25,978,935 in 2022. Even so, we can scarcely afford our NDIS – and our aged care system is seriously underfunded. The prospect of people with disability in Bali being supported by domestic funding is a long way off. This is no criticism of the Indonesian government, just a reflection of the realities of demands on the public purse. It’s tough competition for funding in an increasingly constrained international funding environment. Linda assists YPK by chasing international grants of  around USD$30,000 [AUD$45,000] to survive. That’s an exhausting pressure on an organisation that isn’t culturally attuned to seeking funding on European terms.

There is the constant risk of failing to attract sufficient funds.  In the aftermath of the global paralysis caused by the pandemic, donors have signalled funding reductions around the world.

Disability solidarity 

Climate aside, visiting Bali would be problematic for me because I would have concerns about accessibility. But I could not, in all conscience, expect publicly funded enhancements to the public space – as I do here. Even what I enjoy here in terms of accessibility isn’t ideal. But it is a huge improvement on how things used to be, and I am grateful.

A google search tells me that Accessible Indonesia is a member of the European Network for Accessible Tourism [ENAT], so perhaps I shouldn’t be so concerned. Still, there’s the climate thing for me.

As I became aware of how things are in Bali, I became acutely conscious of how immensely fortunate I am. Yes, in terms of our expectations, I am doing the right thing in pressing the issue of disability inclusion. But it also seems so much like a ‘first world problem’ in comparison. I can do both – continue to agitate for positive change and support YPK. These days I am on such a limited income I was thinking about having a donate button on my blog. Somehow that now seems self-indulgent. I can afford $10 a month.

Bali has been called ‘Australia’s playground’. It’s only been fairly recently that we have been committed to ensuring our own playgrounds are inclusive. I am a member of my local council’s Accessibility Advisory Committee and I have been deeply impressed by the commitment to ensuring that playgrounds are

inclusive. Great journeys begin with small steps – we must support disability inclusion for people with disability in Bali before we can expect an assurance of accessibility when we visit.

How to help?

There are presently three important ways to help YPK.

  1. Assistance with fund raising is vital. Ideas for and help in executing fundraising activities are always welcomed.  
  2. Skilled grant application writers for international tenders are immensely valuable. It’s better to have a team than a solitary hero.
  3. Financial support is foundational. The disparity in currency values means that a little in our terms can have a lot of impact in Bali. There are donation buttons on the website The website needs updating to better accommodate potential international buyers of products in their online store. That’s being addressed. 

There is a range of things we can do.

  • Disability activists can widen their vision from their own imperatives to include a wider perspective on how they can help.
  • Disability ERGs can add support for the YPK to their own philanthropic vision.
  • Individuals who are people with disability or allies can set up periodic contributions and/or preferentially purchase from the website [when updated]
  • Those skilled in grants writing can offer their services pro bono.
  • Down the track I can imagine setting up an online community that can actively develop other ways of helping.


Linda has always challenged my thinking, and I have always been grateful, well mostly. It had been around 22 years since we last spoke, and it felt like it was just yesterday. Some readers will understand this sensation.

My focus on disability has been laser focused on my experience and context. That’s perfectly fine. But now that focus has been disrupted and suddenly there’s a far greater dimension to my appreciation of disability. Seeing a kid in a wheelchair in an environment that will not be friendly to wheelchairs causes me to pause. How tough do they have it?

My immediate response was to write something reflecting my reactions to what I have learned. My second was to set up a AUD$10 a month payment to YPK.

A final thought. AUD$282,000 is only 2,350 people donating $10 a month. That’s not much, is it?

You can contact Linda via her email [email protected] or WhatsApp +61 419 427 274

Living with Disability is a Pain in the Butt Part 3 -Sommer’s story

Please introduce yourself – say as much as you feel comfortable saying about who you are, what your disability is [and whether it is acquired – and at what stage of life]

My name is Sommer, I am a 42-year-old, first time mum to a baby girl named Hayze. I live with a disease of the central nervous system called Multiple Sclerosis (MS) and also have a diagnosis of psoriatic arthritis. 

I was first diagnosed with MS in 2015, following years of unusual debilitating symptoms and doctors’ visits that told me there was nothing wrong. Eventually, over a period of a few days in hospital, I became progressively paralysed down the right side of my body and diagnosed with MS. 

Since 2015, I have fought the ups and downs of MS and its continual relapses, while navigating my way through government bureaucracy to maintain my full-time employment.

My career as a Social Worker/Clinical counsellor has seen my predominantly work with children and families. Then in more recent years I have engaged in social justice work for people with disabilities.

I am currently on maternity leave and enjoying my newborn baby whilst balancing life and MS.

Talk about your experience of disability as a daily experience – how you feel 

I am essentially diagnosed with relapse remitting MS. Which is a term that quite often bugs me. Many people presume that relapsing MS means periods on symptoms and periods without symptoms. Unfortunately, I suffer from daily MS Symptoms that range from numbness, tingling, weakness, heat intolerance, migraines, bladder, and balance issues, (I could go on and on).

Navigating MS has been a journey of its own. I have now had multiple immunotherapy’s that leave me more susceptible to other illnesses and diseases. I have had to be significantly mindful of the risk of covid-19 for example (more so than the average person).

I have significant issues with maintaining my home, personal care and being able to continue to work full-time. But I’m also not in a position where I can just stop working. So, I find myself to be constantly battling to stay ahead or dreaming I would win lotto.

List up to 6 things arising from living with your disability that are a pain in the butt to you 

#1- My right hand – only works sometimes. If I am tired, too hot, or just not having a good day my right hand simply doesn’t function. This can mean that I can’t write/type or even sign my name. I can have a massive tremor that results in spilling drinks and food (usually all over myself).

#2 – Travelling – Travelling used to be the activity that I loved the most. Nowdays, I have to plan weeks in advance and then I’m usually so frustrated at the availability of accessible accommodation and activities that I get fed up and cancel my plans. Hotels do not cater for my needs, airports/planes and transfers are a nightmare and now to add to the difficulty I have a baby requiring a pram and a million other difficult to transport items. 

#3 – Baby Items – I have just discovered a whole new world of items that are not accessible to parents with disabilities. I literally need someone to help put my baby’s pram up and down, I need help with her capsule as it’s that difficult to get out of the car. Product packaging may be child proof, but it is also that not accessible for a person like me with a disability.

#4 -Having to explain myself over and over and over again. I recently took a secondment role where I clearly noted (time and time again) that I could only work from home due to the distance/location of the role, my MS and affiliated complications. I gained the role and then spent the next 12 months continually rejecting the request to come into the office and continually explain that I would not be able to travel due to my health.

#5 – People comparing their experiences of fatigue to my MS fatigue. Not the same thing! Full stop. Don’t argue with me! The number of times people have commented that they are tired and understand my fatigue and compare their own fatigue to mine. The most frustrating and insulting conversation.

#6 – Dealing with the NDIS. The most inequitable yearly experience I have to endure. 

Is there an upside to living with your disability? Feel okay about saying no.


What one thing would you like the reader to understand about living with a disability

That having a disability is hell. If you or your support system are not able to communicate your needs and be heard – you will be 1000% lost in the system.



Yesterday [March 3] I was catching up on Late Night Live with Phillip Adams, an ABC Radio National show I have been following for the last 30+ years. In all that time I had never heard a conversation about Multiple Sclerosis [MS] in any public forum, or about disability for that matter.

The reason I was hearing a conversation now was clear. Phillip’s guest was Robert Douglas-Fairhurst, a Fellow and Tutor in English at Magdalen College, Oxford. Robert had written a book – Metamorphosis: A Life in Pieces. A quick hunt on Amazon told me he’s a prolific author of books on English literature. 

Metamorphosis: A Life in Pieces is a reflection on Robert’s experience of being diagnosed, and living, with MS.

I bought the audiobook and got into it straight away. This isn’t a review of the book. I want to explore why this kind of writing has the exposure it has, compared with other stories about disability.

You can listen to Phillip’s chat with Robert on the ABC website if you don’t have the Late Night Live podcast on your phone [I have the separate stories rather than the full show option].

A worthy tale well told

MS is one of a number of autoimmune diseases. As Robert observes, becoming aware that your body has turned on itself is quite an experience. It’s a slow reveal in a macabrely tantalising kind of way. It is a seriously scary experience.

I have little understanding of MS, although I spent quite a bit of time supporting a former colleague to obtain critical workplace adjustments. Some years before that, I was contacted out of the blue by a workmate who had suddenly disappeared. She told me she had MS and, as her condition deteriorated, her treatment in the workplace distressed her.  She finally went on extended leave in despair. She contacted me because I was the only person who treated her well. She was resigning and wanted to let me know she appreciated my support. I didn’t know she had MS. I was supportive because it was evident something was going on and she was trying to handle it.  She told me she wouldn’t be able to return to work as her conditioned had continued to deteriorate.

This was before I contracted Guillain-Barré syndrome (GBS), and I felt frustrated there was nothing I could do to help. I didn’t know anything about MS. We agreed to stay in touch, but that was the last time we spoke.

Acquiring a disability through a traumatic event [physical or psychological] or via the slower process of disease is a profound business that people cope with in differing ways. Suddenly one’s normal is shattered and a new normal is constructed over time. Often, we are left to sort out our responses unaided, and we fall back on what we have.

Robert is a Professor of English Literature and an accomplished author, so he wrote a book with a lot of connection to literature. An author of his reputation and standing will attract the interest of some shows and not others.

Metamorphosis isn’t just a book about getting MS, but what happens when a Professor of English Literature gets MS. For me it is a deeply fascinating story very well told. Others may prefer stories of acquiring and living with a disability as told by sports people, members of the armed services, victims of motor vehicle accidents and others. These are often public disability heroes. Their stories are told well enough, but without the erudite flourish Robert subtly wields. So much depends on what floats our boats.

A sense of connection

Guillain-Barré syndrome (GBS) is one of the autoimmune diseases and like MS it comes in multiple expressions. In both, the nervous system is attacked by the immune system and muscle weakness and paralysis may be the result. For some the onset of an autoimmune disease is slow, for others it is sudden, as it was for me. Robert describes the relatively sedate process of being aware something was up and of getting a diagnosis. For me, one moment I was crook with something like a bad cold and the next thing I know I am lying on the loungeroom floor as paralysis set in.

Robert reflects on literary associations as he goes through the steps of being diagnosed, and later, as he becomes aware this thing isn’t going away.

My response, when I finally recovered the ability to make coherent movements was to write and to read – but non-fiction rather than literature. In 2008, when I acquired GBS I was struggling through a Masters Honours thesis. When I recovered my writing ability in mid 2009, I completed my thesis as well as sending out email blogs to family and friends, keeping them up to date on my progress.

So, for me, coming across a book that is a personal account of living with MS was as close to engaging with the voice of a person who had a similar kind of experience as was I likely to find. Here I am not saying there is a parallel between the experience of living with MS and GBS. The sense of similarity is in the existential drama of becoming aware that one’s normal has been devastated and a new one is being formed by terrible and confronting degrees. 

The process of psychological adjustment is probably universal for any person who experiences the acquisition of a catastrophic disability, but the details will be different. There is a difference between being suddenly and catastrophically hit and then recovering somewhat over time, and progressively becoming aware that mounting instances of bodily malfunction are signs of something not at all good and this is permanent.

We shared an aching uncertainty about how things might pan out. For me it was wondering to what degree I might recover, and for Robert it was wondering how bad things were going to get.

What Robert does is disclose his inner processes in an authentic and articulate way. He has the resources to flesh them out in a literary context which gives them a depth and beauty rarely found.

An articulate expression of the inner life is a rare thing

Talking about the experience of acquiring and living with a catastrophic disability is hard if all one has is the stark utility of plain language. For that to be workable there must be trust and comfort – a bold capacity to dare assume intimacy. This is something that great fiction writers achieve with their ability to clothe language in evocative beauty without obscuring the utility.

The rest of us struggle to do this, even with those close to us. For most of us telling our stories to others isn’t something that comes naturally. There’s a performative element that we must learn – and an authenticity we must develop and preserve.

Metamorphosis: A Life in Pieces tells the personal story of transformation into a radically different normal with the instruments of literature. It’s a rare privilege to be invited into a world that is not fictional – and it’s an enriching and beautiful place to visit.

There are some aching frank descriptions of living with a disability. Carly Findlay’s Say Hello stands out for me. Carly lives with a severe skin condition called Ichthyosis which leads “to dry, itchy skin that appears scaly, rough, and red.” I found her book a challenging and disturbing read because of the cruelty she was subjected to.

Robert brings an erudite ‘spoonful of sugar’ to help his truth medicine go down. Maybe that’s what got him on a show like Late Night Live. I am grateful for this. Its less a case of a book about MS and more about the storyteller. That can backfire when the storyteller is a disability hero whose main claim to fame is that their disability now defines who they are as a public presence.

Robert’s primary role is as an academic who happens also to have MS. He has taken a catastrophic life experience and looked at it through a sophisticated lens. Its not better than the raw accounts, just rare in comparison. It also means that the subject of MS will reach a far wider audience.


When we dare, we tell our stories as best we can. But story telling is a skill that few master. What is intended as a recitation of fact can be interpreted as a complaint that implicates the listener/reader. Empathy is a desired state but in achieving it takes skill to avoid precipitating sympathy, which can be reactive and ephemeral. Empathy demands inner change in the listener/reader. Sympathy doesn’t. It requires only a performance which has no enduring consequence.

Other than silence there are two options. The first is to process one’s existential trauma first, but this is fiendishly difficult and often results only in the creation of a heroic mask of performative mastery. The second is to craft the trauma into a narrative with authentic sensitivity and skill.

I think we are mostly trapped in option 1. This means that our best attempts may be good enough to serve our purposes, but our worst attempts create and champion heroes whose existential wounds are not only unhealed, they keep the hero locked in an emotional anteroom where they receive their audience. The authentic is left waiting and wanting.

Robert has treated us to an example of option 2. His reputation as an expert on story telling makes talking about his book in polite educated company a good thing to do. Its not often that this happens. I am a dedicated consumer of sophisticated discussions, and outside specific topic podcasts, I have not encountered a general content show talking about living with disability in any context or depth.

This is such a rare experience. Please do take the opportunity to read/listen to the book. Not only do you get an open discussion of the personal experience of living with MS, but you also learn about the disease itself, and its presence in literature.

As always, I have hyperlinks to Amazon because readers may need to access ebook or audiobook versions. Please support your local independent bookshop whenever you can.