Diving into Glass

by Caro Llewellyn

Caro Llewellyn was living her dream life in her adopted home of New York, directing an international literary festival. Then one day, running in Central Park, she lost all sensation in her legs. Two days later she was diagnosed with multiple sclerosis.

Caro was no stranger to tragedy. Her father Richard contracted polio at the age of twenty and spent the rest of his life in a wheelchair. Dignified, undaunted and ingenious, he was determined to make every day count, not least seducing his nurse while still confined to an iron lung, then marrying her.

But when Caro was herself blindsided by illness, cut loose from everything she depended on, she couldn’t summon any of the grace and courage she’d witnessed growing up. She was furious, toxic, humiliated. Only by looking back at her father’s extraordinary example was she able to rediscover her own grit and find a way forward, rebuilding her life shard by shard.

An emotionally brutal memoir of family, vulnerability and purpose, Diving into Glass is a searing, often funny portrait of the realities of disability and an intimate account of two lives filled with vigour and audacity.

'Caro Llewellyn's portrait of her father is a tour de force. It is entirely unpredictable and consistently exhilarating. I read it in one transfixed sitting.’ Janet Malcolm

‘Disturbing, compelling, portentous, obsessive, repetitious, persistent, prophetic, packed with shocks of recognition.’ Annie Proulx

‘Indefatigable and unsinkable, Llewellyn keeps her story on pace as if her very life, and her father’s legacy, depended on it. Inspiring and uplifting.’ Mary Norris, author of Between You & Me

‘Llewellyn has landed herself alongside the great memoirists of our time. A riveting marvel.’ Elizabeth Flock, author of The Heart is a Shifting Sea

Genres: Nonfiction, Memoir, Biography, Biography Memoir, Book Club, Disability, Australia

336 pages, Paperback

Published March 5, 2019

Reviews

[Nat K · Rating 4 out of 5]

*** Shortlisted for the 2020 Stella Prize ***

"We're on our own in life and fate will always deal exactly the cards it wishes, no matter the will or love of any human being."

Picture this. It's early morning in New York City. You're going for your daily run, as you do every morning. But this time you don't hit your usual stride. You feel odd. Weak. Off. You feel liquid running down your legs? Is it sweat or have you wet yourself? Panic sets in.

It turns out that Caro Llewellyn is diagnosed with M.S (multiple sclerosis). This knocks her for a six. Caro always thought she was indestructible and lived her life accordingly. She got this belief in herself from her Dad.

Caro's father Richard fell victim to polio at the ripe old age of 20. He was a sailor, revelling in the freedom that life on the sea availed him. It was such an unfortunate event, happening at the end of the polio epidemic. The level of devastation on his body would not have occurred if proper access to medical care was made immediately available. Sadly this was not the case. Paralysis set in, and he was confined to a wheelchair as a result.

But Richard was a determined and charismatic character*. Wooing his nurse and marrying her, Caro & her brother Hugh completed their family. He never felt sorry for himself. He just got on with things. Which is a lesson Caro took with her through to adulthood. To be stoical. To never complain and just get on with things.

"His great lesson was to teach me that we're free as we allow our minds to be. Imagination can save your life if you need it to. "

I enjoyed reading about Caro's family life, which was certainly different to most. The dynamic often being fraught with upsets and anger, as dealing with a family member who is completely reliant on others, is not easy. It was quite chaotic and difficult for Caro as a keenly empathetic child to deal with the emotions of her parents. Eventually love falls to the wayside. And the fallout is spectacular.

I was surprised that so much of the book was about Caro's father and growing up in Adelaide, rather than how Caro is dealing with M.S. But that's ok. It's her story to tell as she needs to.

The final quarter of the story is where we again join Caro as an adult. Living life to the fullest, at breakneck speed. Throwing herself completely into whatever cause she was following or whomever she was loving. Living in various countries. Eventually understanding the darkness her mother must have felt when she no longer loved Caro's father. Realisations hit hard. Caro finds that parts of her are more like her Mum than she'd care to admit.

The title is oh-so-apt. I realise that it is a line in the book where she is diving into the sea on hearing of her father's cancer diagnosis. But to me, it must also be how Caro Llewellyn felt when she got her M.S diagnosis.

I liked this book so very much. It's down to earth. It's not self pitying. There are plenty of funny and even joyous moments. It makes you realise that life can throw you curveballs, regardless of how "prepared" you think you are for them.

An absolutely beautifully written memoir. Full of human frailty. I encourage you to read it.

"...life is like that. It all depends on how you look at it, and from whose perspective. What you know or don't know, what you see or don't see, changes everything."

*** Leap and the net will appear ***

Long listed for the 2020 Stella Prize. Good luck!

*** Another buddy read (No.9!) with the wonderful, talented Mr.Neale-ski. Please make sure you read his review also at https://www.goodreads.com/review/show... ***

* Thanks to Richard Llewellyn's efforts, major changes were made to the lives of people with a disability.

He helped to "...legislate for accessible public buildings, footpaths with ramps, accessible toilets. His tireless campaigning helped make it impossible not to hire someone with a disability if they were the best candidate for the job."

Bravo for his grit and determination.

[Neale · Rating 4 out of 5]

Longlisted for the 2020 Stella Prize.

At twenty years of age Caro’s father was struck down by Polio. He was confined to an iron lung, his own lungs unable to perform their vital role. The doctors said he would not last more than a few days. Three years later he went on to marry the nurse that looked after him and become the father of Caro and her older brother. The saddest and most cruel part of Caro’s father’s story is that Polio was all but eliminated by vaccine when he was struck down with it. He was one of the last in Australia not to escape its deadly grasp.

Believing in Karma, believing that what had happened to her father ensured that she would be safe. Caro felt bullet-proof, skating through life in what she saw as a big adventure. Caro decided to live her life for her father as well as herself, and she lived it to the hilt.

Then one day running in New York’s Central Park. Caro was pulled up short unable to keep running. She had just celebrated her forty-fourth birthday. She checked herself into hospital and she was shocked by the neurologist’s prognosis. Caro was diagnosed with Multiple Sclerosis.

Her first thoughts were “Why me?”. She had lived her life well. Never afraid, taking on all challenges. Why had Karma deserted her?

Caro’s words,

“We’re on our own in life and fate will always deal exactly the cards it wishes, no matter the will or love of any human being.”

As Llewellyn tells her story, she constantly compares her struggle with her father’s. Dipping back and forth between the past and the present. The struggles he faced and overcame so very much like her own. Her father taught her never to give in to self-pity.

Because of his illness Caro’s father was a virtual constant figure in her childhood. Most fathers would see their children in the morning before school then at the end of the day after work. So, the Polio did give Caro and her father one positive point, each other. An unbreakable bond was formed between the two and you realise how much her father and his illness forged Llewellyn into the woman she is today.

The stories of Llewellyn’s early childhood are a joy to read and the writing beautifully descriptive, I love this passage,

“On race days we often lay down on the grass right underneath the white wooden fence of the track’s inner border, with our ears to the ground. The rumble of hoofs pulsed through my small five-year-old body I could feel the horses through the earth long before they took the last turn onto the straight in front of the old wooden member’s stand. It was exhilarating. The thunderous sound as the horses galloped around the corner – almost upon us – the smell of horse sweat mixed with the loamy track kicked up under the horses’ hoofs, the sound of men shouting, the crack of whips on rumps, the guttural sounds of the horses stretched out at full pelt”.

You could almost be excused for thinking you were there with Llewellyn and her brother. And this beautiful writing remains constant throughout the whole memoir.

I must admit that I was expecting more of the book to be about Caro’s personal struggle with multiple sclerosis and kept waiting for her story to emerge, but after awhile I found myself enjoying the memoir so much that it didn’t matter. Caro’s own life and struggle with multiple sclerosis only plays a tiny role at the end of the book and at times it seems that this memoir is more about the father than Caro.

As with fiction and non-fiction, memoirs must be enjoyable to read, and this one is. Llewellyn’s writing is exquisite and descriptive. At times it is hard to put the book down because Llewellyn knows how to spin a great yarn. Llewellyn is a born storyteller, gifted with that intangible ability to turn an everyday memory into an interesting anecdote. An extremely enjoyable read. 4 Stars.

This was another buddy read with the wonderful Nat K, so please check out her review when she posts it.

There is also a link to an ABC podcast with Llewellyn on my blog here - https://www.collinsbookblog.com/post/...

[Michael Livingston · Rating 3 out of 5]

This was... fine? I had high expectations, with its recent inclusion on the Stella Prize longlist, but they weren't really met. It might just be that memoir isn't my genre - I was similarly underwhelmed by Stella winner The Erratics. This book is framed as the story of Llewellyn's diagnosis and life with MS, but this is really only a small section of the book. The rest focuses on her life story, especially as it intersects with her father, who lost the use of his legs to polio as a young adult. In some ways, I might have preferred a biography that focussed *more* on her father, who's disability advocacy work for example is touched on, but not really explored in detail. In the end it felt a bit like it was neither one thing or the other, and left me a bit frustrated.

[Todd Winther · Rating 2 out of 5]

To the average reader without a disability, 'Diving Into Glass' may seem like a traditional memoir, where the author tells their story, encounters difficulties, and offers the reader a couple of lessons to take away with them at the end. Unfortunately, as a person with Cerebral Palsy, I can tell you that ‘Diving Into Glass’ isn’t a simple memoir. It is instead a quasi-biography dressed up as a memoir. Such distinctions are fundamentally important. 

The author of ‘Diving Into Glass’, Caro Llewelyn is the new CEO of the Wheeler Centre, an accomplished author, and a respected curator of many artistic festivals. But the great majority of this book is about her father Richard Llewelyn, who was diagnosed with polio at age 20. The book is a chronicle of the challenges that he confronts during the course of his life from HER perspective.  

When I was a child in Adelaide attending the special school and therapy centre known as Regency Park Centre (RPC), I was not only familiar with Richard’s work, but around the campus he was rightly revered as a pioneer in establishing RPC, and if it wasn’t for RPC my life would be very different. Given that Richard was the central to the RPC story, I admit that I could potentially have a bias.

Despite this, the book was marketed as Caro’s story about her diagnosis of multiple sclerosis and her attempts to understand it. However, that only occurred after her father had died in 2004, three quarters of the way through the book (Though it is described in the short preface, and fitfully described in illusory fragments without depth until then). 

The narrative the reader sees instead is an assessment of trauma, and specifically of the trauma relating to having a father with a severe physical disability. For better or worse, the reader is invited to be sympathetic with Caro, and her circumstances, given that they were not of her own making. Although she speaks lovingly of her father at times, this book is about how his disability effected her.

It is enormously difficult to live with a severe physical disability on a daily basis. My parents and my brother experience different challenges as a result of my disability, I only know on a superficial level what their experiences are like. If they wrote a memoir about their time with me, it would be very different to the one I would write about myself. We have different perspectives, and different versions of the same stories, even if we are all a part of them. But at the end of the day, I would like to think that my family would write about my personality, my quirks, my strengths, and my weaknesses, as a complex human being. Some of these would be connected to my disability, but I hope the majority of these would not. 

The overriding failure of ‘Diving into Glass’ is that we are only allowed to see Richard through one perspective. If it were Caro’s, an argument could be made that it is valid, but the actual perspective is more troubling. Everything concerning Richard is seen through the prism of his disability. Richard is not just the sum total of his disability, he is a man who has polio, who should be evaluated as a human being. 

Caro’s failure is particularly noticeable during one disturbing passage that leaps off the page. In a fit of anger during her childhood, Caro explains that she wished to set fire to the family home with her father trapped inside. She reasoned that he could escape and that would somehow prove that he had been faking his disability. Perhaps a person without a disability could commend Caro’s honesty and candour, and by no means do I think or suggest that Caro was going to follow through on this immature and murderous impulse. However, the suggestion of this on the page is troubling enough for me. The mere thought of murdering a person with a disability who cannot defend himself, and describing it in the book gives the reader permission to think it is a rational response, particularly given the detached manner in which she recounts it.   

Whilst some of the book examines Richard’s pioneering achievements, and emphasises his stubbornness and resourcefulness, a study of his character seems to be a secondary impulse. The constant demand of the reader is to empathise with Caro, her story, and the reasons why her father’s polio tore the family apart. 

This is where Caro’s subjectivity overwhelms a far more compelling narrative. Richard had two unique and multifaceted marriages. They were not unique because he was disabled, they were unique because they were so different. Interabled marriages are rarely discussed with complexity and nuance, and unfortunately there’s no room for that in this book.    

Richard’s first wife Kate was a nurse in the hospital where Richard stayed when he was first diagnosed with polio. They were both young and impetuous, in fact Caro describes how they were so good together in the initial stages of courtship, because without Kate, Richard would not have survived the first year after his diagnosis. Even this positive assessment is described through the lens of Richard’s disability.  

I was particularly struck by a passage that describes a scene on their wedding day when Kate’s mother suggested to her that instead of marrying Richard, she would have preferred that Kate marry a dog. When read that passage, I grimaced. and cried out with pain. Later in the book as Caro describes the destruction of that marriage, she suggests that her grandmother may have been right, for it would have spared her mother the emotional turmoil that followed. What about Richard? How would he feel being compared to a dog, and then reading that his daughter hypothesising that perhaps the comparison could be correct? 

Yes, Richard and Kate’s marriage ended in carnage, but despite the challenges of supporting Richard with his activities of daily living, even the most impartial observer can deduce that it was not the only reason their marriage failed. Caro does admit to her mother’s many faults, and emotional volatility, but she shows her mother far more sympathy than her father is ever given. 

As that marriage was crumbling, Richard fell in love with his support worker who came in to provide physical and emotional support when Kate could not. Becky is American, she was young when she started helping Richard, and in many ways completely opposite to Kate. Caro was sent to live with her mother just as Richard’s second relationship, and subsequent marriage was solidifying, so we do not get a great deal of insight into Richard’s relationship with Becky. Instead, we are left with a few anecdotes about how Becky managed Richard’s daily living tasks, and how she encouraged parts of Richard’s personality that Caro did not connect with. 

If you think my assessments of the book are harsh, that is because I’m echoing the tone of the book. 

'Diving Into Glass’ is a microcosm of the biggest debate discussed within the disability sector. Why are the stories of people with disabilities themselves sidelined in favour of those who are their family and/or caregivers? Why is it that these perspectives are given more currency? 

I would encourage people to read this book, but I feel it (and many others like it) should come with a warning, similar to the ones seen on cigarette packages.  

“This story is not representative of the protagonist’s disability”  

Having said this, what I really want to see is an objective, thoroughly researched biography of Richard Llewellyn. If Caro’s goal was to inform the reader of what a remarkable man her father was, she has achieved her objective in spite of herself. Her memoir does not respect people with disabilities, their struggles, and their right to be seen as fully realised, multifaceted, independent human beings that are not just the sum total of their own impairments. 

I dream that somewhere, tucked away, Richard has a memoir. If by some miracle he does, would it even be published? Or sold in mainstream bookstores? At least it would be his story. It needs to be told properly and given the appropriate justice.

[Natasha (jouljet) · Rating 2 out of 5]

Memoir from former director of Sydney Writers Festival, Caro Llewellyn tells of her difficult childhood as the daughter of a man in a wheelchair after Polio, to then later receiving her own diagnosis of MS.

This outlines a tough upbringing, with her parents' challenging relationship and eventual messy divorce, and also living through the stigma of having a father with a disability.

But her father was an incredible man, and accomplished so much - Caro's complicated relationship with both her parents have overshadowed this, and not allowed much of this to come through. An estrangement from her father for a period of time perhaps removed these achievements from her own story, and has left a mark on how her telling has translated to page.

Much of this is hard, uncomfortable reading - not because of the content, but due to the way Caro describes her father's and her own disabilities, the impacts, and her views on both disabling experiences. She is struggling here with her own internal ableism, in describing both her own experiences - which could be grief and denial - but also in the way she comments on her father's life, achievements and struggles. So many passages left me cringing with the language used.

I think this would've benefited from further editing, with passages and whole small chapters of observations or anecdotes not really adding to the story.

I never really warmed to Caro here in these pages, which was a surprise to me after hearing her speak at the Bryon Writers Festival last year about this book, and disability.

[Theresa Smith · Rating 3 out of 5]

I don’t like musicals. All of the singing just seems to get in the way of the story, and while there have been couple of exceptions to my dislike (Mary Poppins, Mamma Mia, Into the Woods), generally speaking, if someone suggests we go and see a musical, either live or at the movies, I find myself very busy on that day. For me, memoirs are the literary equivalent of a musical: so much promise, but all of the singing just ends up getting in the way. Also, I don’t think it’s an accident that the word memoir begins with ‘me’.

Now, I don’t read many memoirs, just like I don’t watch many musicals, but from time to time one will pique my interest. I actually requested Diving into Glass from the publisher for review because the topic of the memoir, a woman dealing with a diagnosis of multiple sclerosis, was on my radar of interest. And it starts well, the prologue drew me in and held my attention, for Caro Llewellyn has a fantastic turn of phrase. Yet, from chapter one through to chapter 37 (page 265 of a 315 page book) it’s all distracting singing: everything about her parents, her childhood, her schooling, failed relationships, being a single mother, career choices – nothing about her MS journey. Some of this was interesting, but on the whole, I honestly didn’t care. I chose this book because I wanted to read about a woman dealing with a diagnosis of MS. 57 pages of this book covered her MS, but everything in the middle was pretty much what I don’t like about memoirs: the rehashing of everything in a person’s life up until that point, with an over-blown focus on an author’s parents and the miniature of their childhood. Those 57 pages were excellent, which makes my disappointment in the rest of the book more profound. Memoirs are tricky beasts, particularly once a person’s childhood factors into the book. Memories are flimsy at best, but I’m not inclined to trust vivid recounts of things that happened when a person was five. I just can’t credit it. But I will completely take responsibility for my dislike: this is a memoir, and as a result, it was always likely to be more miss than hit for me.

Fans of memoirs will think this is an incredible book; in many ways it is. Caro Llewellyn certainly writes well, and for the most part, there is a lack of the type of self-indulgence ever present in memoirs. She accepts responsibility for her own actions, she doesn’t demonise her parents, nor does she wallow – all factors I appreciated. I just really wish there had been more of her MS journey through to the present day and less of everything else. I need to stay away from this form of writing and stick to reading biographies and fiction.


Thanks is extended to Penguin Random House Australia for providing me with a copy of Diving into Glass for review.

[Lesley Moseley · Rating 2 out of 5]

Bored me silly as it was not only mostly about her father and his life after polio, but each of the grandparents backstories. Hardly anything about MS. Or is that going to be the sequel. Not for me.

[Jennifer (JC-S) · Rating 4 out of 5]

‘Shortly after my forty-fourth birthday, I was stopped in my tracks running in New York’s Central Park.’

I picked up this book, thinking I was about to read a memoir of life with multiple sclerosis. I picked up this book, knowing that it had been shortlisted for the Stella Prize in 2020. I was curious.

While this book does touch on Ms Llewellyn’s diagnosis of and life with multiple sclerosis, much of it is about her childhood. It is also the story of her father, Richard, who contracted polio as a twenty-year-old. Richard Llewellyn contacted polio towards the end of the polio epidemic in the 1950s, was confined to an iron lung for some time and then to a wheelchair for the rest of his life. Richard Llewellyn’s determination provides a focus for Caro as she struggles to come to terms with her diagnosis and what it means.

But there is another dimension to this memoir. There is the story of how her parents met (her mother nursed Richard in hospital) married, had children, and later separated. Physical limitations and mental illness both play a part. Caro’s own illness takes her back through those memories:

‘His great lesson was to teach me that we're free as we allow our minds to be. Imagination can save your life if you need it to. ‘

Memory can be a strange thing. Interpreting our lived experience as children through our memories as adults can add a dimension of acceptance and understanding. It can also be confronting: seeing some of the traits of our parents in ourselves.

When I picked up this book, I was expecting something quite different. But Caro’s description of her father’s experiences took me back into my own family history. My father also had polio, and while he was not as severely affected as Richard Llewellyn, he fought hard to be able to walk again and never retained his early adult muscle tone. I remember listening to my grandmother’s descriptions of the physical therapy he underwent to walk, and how very brave he was.

And so it is that a memoir written by one person can be a jumping off point for memories of life for another. Multiple sclerosis is another disease which varies in its impact. I hope that Caro Llewellyn continues to find the courage she needs for her own journey. As her father did.

Jennifer Cameron-Smith

[Kristy Sayer-Jones · Rating 3 out of 5]

This wasn't my favourite read of the year, but it was an interesting one. I love memoirs because you get to learn a little bit more about what life is like in someone else's shoes - and if you were to think about Caro's shoes... well, they probably looked pretty on the outside - but on the inside, her feet were squashed and covered with blisters.

Caro's life was filled with tragedy, heartache and keeping up appearances. Her father was left crippled by polio at the age of 20, spending the rest of his life in a wheelchair. Though determined to make every day count, Richard had to rely upon the help of others to get through each day. Caro's mother initially seemed like somewhat of a saviour - a pretty, young nurse who fell in love with Richard from his hospital bed - but as children came along and the realities of life played out, she could no longer cope. From the outside, Caro's family seemed perfect - but life behind closed doors told a different story.

From feeling like her father abandoned her when he later married their nanny, to frantically trying to cope with her mother's severe mood swings, Caro's life was filled with turmoil - but she always seemed to get through. Growing up and moving overseas to pursue her dream career, it seems like Caro finally has it all together when she's living in her dream city of New York, directing an international literary festival - but then or a regular run through Central Park, everything changes.

Suddenly she has no feeling in her legs. She's diagnosed with MS and the only way she knows to get through this shock diagnosis is to dig back through her father's life, living by his example and repairing her life shard by shard.

Review from http://www.instagram.com/southerninlaw

[Lydia · Rating 4 out of 5]

'Diving Into Glass' is a spectacular memoir by Caro Llewellyn, brilliantly written by this giant in the literary community.

Publicly, Llewellyn is the former director of several large-scale literary festivals throughout Australia and America. This memoir is a deep and authentic window into her private life.

The book, powerfully mirrors her experiences of growing up with a father wounded by polio, with Llewellyn's own shock diagnosis of multiple sclerosis.

While her father oozed stoicism in the face of adversity, Caro is forced to admit weakness and disappointment at her future. 

It is a raw and sometimes uncomfortable telling of her own truth, a memoir of making sense of one's life. The good, the bad and the ugly.

Llewellyn's vulnerable style, immediately draws you in to her book. She is honest, and relatable and challenges our sense of security, identity and mortality.

A strong, intelligent and brave woman who confronts her inner self, and leaves you wondering if you too can take on the world. 

[Carly Findlay · Rating 2 out of 5]

Content warning: disability slurs, allusion to violence toward disabled people.

This is an excerpt from a longer piece I wrote, as part of The Stella Prize.

Read my full response to the book here: http://carlyfindlay.com.au/2020/12/28...

-

Caro Llewellyn’s Diving into Glass (Penguin, April 2019) was a daring choice by the Stella Prize judges. The book took her more than fifteen years to write, and she told me it was very challenging to write such a personal story.

Part memoir, part biography of her late father, Richard Llewellyn AM, the book strongly focuses on disability – Richard’s disability as a result of acquiring Polio when he was 20, and Caro’s own diagnosis of Multiple Sclerosis (MS) when she was 44. The book also details the minutiae of her often difficult early life growing up in Adelaide, various romantic relationships, the birth of her son when she was 23 and becoming a single mother at 24, and her career. Caro also writes about her mother, writer Kate Lewellyn, who at times, had violent outbursts. Her parents met when her Dad was in hospital in an iron lung – her Mum nursed him. They married against family members’ wishes, and separated 12 years later.

Caro’s career has been illustrious – working as a band booker, in publishing houses, as the director of four world class writers festivals and and most recently at the Melbourne museum. Though it hasn’t been without struggle – she experienced sexual harassment as a cafe worker, workplace bullying at an international writers festival, and loneliness, and perhaps regret, as a result of leaving her son in Australia while she worked overseas. She also glossed over the three previous books she‘s written, a detail I felt was rushed.

I write this piece as a disabled woman, a writer, a writer passionate about disability inclusion and representation in literature, and also an advocate for accessibility in bookstores, publishing houses, and writers festivals.

Caro and my experiences and acceptance of disability are very different. I was born with my disability (a rare, severe skin condition), although didn’t identify as disabled until my mid 20s. It took a lot of practice to get proud, especially because so many people believe I can’t possibly be proud looking like I do, and tell me I’m unworthy of love, happiness and equality – through overt discrimination, exclusion and subtle microaggressions. I imagine this was the same for Richard, and indeed Caro.

I am passionate about increased positive representation of disability in literature and media. Tragic stories around disability are the default, and I strive to change that in my work.I think it’s excellent that a large mainstream publisher published a disability memoir and biography, and that it’s been shortlisted for The Stella Prize. I hope that Diving Into Glass paves the way for many other types of disability stories to be published and win awards....

In my work, I’ve been vocal about how people write about disability – especially the power imbalance that comes with non disabled storytellers. I am passionate about disabled people writing on disability – and so I’m grateful for this very writing opportunity, and also appreciative of Astrid Edwards’ review of Diving Into Glass (Astrid also has MS). And I also constantly question whose story is it to tell? The themes of people’s stories about disability – especially of a family member – are often burden, grief and shame. I believe this narrative not only impacts on the disabled person being written about, but the disability community as a whole. It’s hard to find pride when people show little respect and value for you.

But it becomes tricky when a disabled person writes about their own ableism towards others. On one hand, Caro’s feelings of abandonment and the shame she felt around her father’s disability are valid parts of her story. On the other hand, her father is dead – with no right of reply. While she writes about the discrimination and humiliation he faces by the public, his workplace and also family, she also writes about the shame and resentment she harboured towards her father, often very ableist...

This is an excerpt from a longer piece I wrote, as part of The Stella Prize.

Read my full response to the book here: http://carlyfindlay.com.au/2020/12/28...

[Tundra · Rating 3 out of 5]

2 1/2 stars. While this book was an adequate and well written book it really seemed to lack focus. Was this a memoir about Llewellyn’s father? a personal memoir ? or an insight into MS? I found the first half, about Llewellyn’s father, the most interesting but her own story, that developed later in the book, was overly focused on her connection to ‘rich and famous people’ (name dropping). The MS part of her story was tacked on and didn’t offer much insight (other than the obvious) and I just felt it went nowhere. She mentioned she was estranged from her father but it seemed more like she didn’t (or wasn’t allowed) to visit him rather than a falling out. And what actually happened to her mother? I’ve read a number of the 2020 Stella Prize shortlisted novels and I really don’t think it is in the same league. Perhaps her connection within the literary world gave her a leg up on this one.

[Kim · Rating 4 out of 5]

This memoir came to my attention via the 2020 Stella short-list.
I've enjoyed Kate Llewellyn's work, Caro's Mum, I found this a very interesting memoir.  
It's one of those memoirs that while interesting in its own right, it provided a lot to reflect on with my own life. Our similarities and differences. How we view our own limitations and those close to us. 

[Louise · Rating 3 out of 5]

This is a nostalgic, poignant memoir of the relationship between a father and a daughter which I enjoyed thoroughly.

[Annette Chidzey · Rating 4 out of 5]

There is no doubt that reading a book at a particular time in your life or that of the society in which you live can cause it to resonate more memorably with it than might otherwise be the case.
This is definitely the coincidence associated with this read. I learned about this autobiographical account/memoir in an edition of Spectrum in The Age one Saturday and found myself writing it down to try and purchase at some point.
With the rapid onset of COVID-19, I bought up on books recently released so as to have a steady supply and was glad to have the opportunity to discover the writing of yet another unknown Australian writer- or at least unknown to me.
From the outset, I was engaged in Caro’s life story and found the locational settings of Adelaide, Sydney and New York city very readily visualised. The references to Central Park were very emotive for me as it was a special place I had the chance to visit recently having had my own health challenges delay that first planned visit. So to read about her first onset of MS there while running through the park was especially moving.
Though much of the account is about growing up and living with her polio- stricken father who refused to succumb to his disability, there is the stark reminder that just like Caro came to discover in its own cruel way, “we’re on our own in life and fate will always deal exactly the cards it wishes.”
We are living through times that could never have been fully anticipated by many of us and we are learning to deal with the cards we have been dealt. It’s in situations such as these and through accounts such as’Diving into Glass’ that we come to see how literature reflects life and life emulates literature.

[Ali · Rating 3 out of 5]

Memoir is a very specific genre, one that brings the reader into a very personal sense of reflection upon a life from a relentlessly singular perspective. Caro Llewellyn's life has plenty of material to mine, and the book focuses largely on Llewellyn's remarkable parents, whose lives are shaped by the ongoing intersection of personality and disability, and whose resulting relationship in turn shapes Caro. The book also deals with the discombobulating effect of developing an autoimmune disorder, and through the book runs a thread of establishing a solid sense of self, of what risk taking means, and how disabilty affects, but does not control, that. Llewellyn writes with clarity and a distinct turn of phrase. She examines her family unflinchingly, but tempered with kindness. The book's key themes are more personal than structural - Llewellyn is more interested in the way her family and personality shaped her choice making than societal structures.
Although a decade younger than Llewelleyn, the middle-class left of Adelaide also surrounded ny adolescence (based on the descriptions here, I'm pretty sure Adelaide Uni classics lectures were identical for at least a decade), and Llewellyn's early adulthood held more parallels, as did her diagnosis with an autoimmune disease. Rather than deepening my experience with the novel, it had the opposite effect - I have begun to understand about myself that while I appreciate memoir which brings me new windows into experiences I cannot understand, I get uncomfortable with those which reflect my own (and possibly, by extension, ask me to reflect upon myself). This was perhaps especially true in the responses to illness. Much of Llewellyn's world was uncomfortably familiar - the new ways you need to live when unpredictable bits of your body don't work - and yes, the fear. Other were not - I was again, madly grateful that I live in a country with a public health system.
The focus on the personal, particularly when Llewellyn, like myself, draws upon a significant pool of structural privilege in her choices, also contrasted with much of my other reading lately in a way that made me uncomfortable.

[Sam · Rating 2 out of 5]

I have mixed feelings about this book. On the one hand, as a memoir it has some interesting parts about growing up in 1970’s Adelaide and about her father negotiating life with polio. In fact, the book is more of a biography of her father than a personal memoir in many ways. The short section where she discusses her MS diagnosis is great, but otherwise the book tends to skip around and is fairly patchy.

Memoir is tricky - it is after all one persons memory of their life, their lived experience. Of course it can’t be perfectly executed, diverse, politically correct. Her description of how they treated her father in his wheelchair are often hard to read, because we read this through a lens of current expectations however life is mostly imperfect people doing their best in an imperfect world. And on that count the author certainly delivers, she doesn’t sugar coat the often unflattering aspects of her reality.

On the other hand, I don’t understand how this book made the Stella long list in a field of so many great books this year. Reading it feels like there is an integral part of the story missing, some element that would pull it all together.

[Sandra · Rating 4 out of 5]

'I wasn't Athena, the ancient goddess of victory and wisdom, I was a snivelling Job, sitting in a bathtub demanding, 'Why me?'

I found this memoir a powerful and provoking read, not for the reasons I thought I would. Caro Llewellyn collapsed in Central Park after years of running, to quickly receive the news that she had MS. This diagnosis was not on her expected life plan and due to being raised by a father who was 95% paralysed from polio, believed his promise that he had somehow absorbed all the bad karmic forces for her and her brother.

'What happened to my father's promise? Sitting in the tub in my apartment, I realised he had not protected me from anything. How could he? Promises like that can't be made. Even from the most well-meaning and protective parent. There are no superheroes waiting in the wings. We're on our own in life and fate will always deal exactly the cards it wishes, no matter the will or love of any human being.'

Caro, begins to look back over her life and before, as she shares her parents' story and her upbringing. The confines of her father's wheelchair did not limit the effect his indominatable spirit had on her and in place of hugs or hand holding, he gave her words.

'Instead of asking himself 'Why me?' he thought, 'Why not me?'
It tuns out 'Why not me?' is the very best question to ask yourself at the worst moment of your life. With that question on your lips and in your head, your eyes are set to the horizon and, before you've even made your first move, you have taken a step to clawing your way back to life.'

Caro was brought up with stories. They included her grandfather war history, how her father ended up with severe polio at the end of the epidemic and how he caught the eye of a young beautiful nurse. But how do you interpret the stories of your lived experience? Are they happy, sad or misshapen? By the time Caro was born her parents' marriage had changed from love to resentment and she felt the veneer of happiness quickly dissolve.

'Inside, though, when the doors were closed and we were just the four of us, everything changed. Sweetness left the moment the visitors did.'

Together with her brother Hugh they tackled there situation with resilience, doing chores, running errands, visiting friends and going on their own adventures. Eventually their parent's marriage breaks down after her father meets Becky. Caro and Hugh remain with their mother, whose erratic behaviour continues.

'Once I said to her that I didn't think I had a very happy childhood.
'But darling,' she said, 'you had French wallpaper in your bedroom.'

Caro's theme in adulthood, which was revealed to her at a new agency in New York City, 'Leap and a net will appear', saw her leaving a university degree and building a career path that would lead her to eventually run the Sydney Writer's Festival from 2002-2006, and at the height of her success move to New York, where she worked for PEN.

'I was born into restlessness; I learned from my father to keep my eyes set to the horizon, to plot a scheme for what was next. I didn't understand the idea of contentment. I had to strive for more, push myself harder. Goals weren't met simply for their own sake. I turned by back on my success like they were cast-off lovers and went looking for the next, like a true addict.'

So by looking back, and listening to her gut, Caro finds herself leaving the fog of her diagnosis and finding the elements she needs to regain her sense of self.

'I sat on the deck relishing the sunshine, as my father always had, with my eyes set on the horizon.'

I enjoyed Caro's honesty, she wrote her parents with love but allowed the reader to see their flaws. I also experienced nostalgia when she shared her Adelaide upbringing, running around streets with her brother, reminded me of my childhood.

[Emily · Rating 2 out of 5]

Tighter editing and a much clearer focus would have been of considerable benefit to this book, I think. While there were important parallels to draw between Llewellyn’s MS diagnosis and her father’s life as a person with a disability, much of this book strayed from that point, and I was left wanting more. Llewellyn’s detailed and chronological retelling of her life story was just that - detailed and chronological, with little space for reflection or insight. Entire chapters did nothing to advance the story in any way (other than to name-drop famous writers) making this an increasingly frustrating read.

[Jessica · Rating 5 out of 5]

I always find it difficult to rate non-fiction, particularly autobiographical work. It feels so audacious to assume the right to judge whether someone else’s life is entertaining enough, or conveyed well in the written form. All lives deserve a 5-star rating, yet not all books tell these lives in a 5-star way. With that said, Diving into Glass deserves a perfect score. I devoured it.

If you are looking for a detailed account of MS and its treatments, this book might not deliver exactly. What it does deliver is a tender and heart-felt reflection on family, adversity and spirit. My favourite learning was (in the words of Caro’s father) “You have to play the best hand with the cards you have.” Caro has done a great job at capturing the tiny little moments including all their horrible inclusions, to show that “it is not how long you live, but how well” that really matters. A story worth remembering when all feels lost.

[Alayne · Rating 3 out of 5]

I found this book very slow going at first, as she kept switching back and forth between her diagnosis of MS and her father's polio. After the first quarter of the book I found it better, but it wasn't until she got to herself as an adult that I really found it interesting. I would have liked the story to be told in a more straightforward way, I think, but I don't usually find switching around to be a problem. So whatever it was, I didn't fully get into the book until halfway through.

[Jackie McMillan · Rating 3 out of 5]

(3.5 stars)
I was lured into Diving Into Glass on the premise that this memoir was about Caro Llewellyn suddenly not being able to walk in New York’s Central Park, when she was struck down with multiple sclerosis (MS). It was thus disappointing to find out three-quarters of the book is the story of her father, who was struck down with polio as a young man. Her father had “two options in front of him—anger on the one hand and ‘let’s salvage what we can of this’ on the other—he decidedly chose the latter.”

Once I got over my annoyance that the story of a woman I found interesting, was largely actually the story of a man, I found the book more engaging. By necessity, Caro’s father takes a rather mercenary approach to love: “He knew back then that marriage was the only way for a person with a disability to get independence.” He was living with a disability in a very different time—the late fifties and early sixties: “Before the days of caregivers and support workers, wives or husbands were the only alternative to mothers or institutionalisation.”

“I never learned to register or express my own needs, because compared with my father’s physical needs and my mother’s emotional ones, mine were so far down the totem pole they were insignificant.” Caro’s experience as a child of a parent with disability overlapped a lot with my own as a person who is a sibling of someone with disability. Like Caro, “I have to be very, very sick before I take myself to a doctor.” So in this respect, her father’s story is the precursor to how she even understands disability or illness. Perhaps it appealed because the author and I are of a similar vintage, as “the idea of a crockpot still puts a pit in my stomach” too, and I recall “Nana Mouskouri played on the stereo in the background” of my memories as well. I certainly could relate to Caro thinking she did not have a very happy childhood, and being given glib answers in response: “‘But darling,’ she said, ‘you had French wallpaper in your bedroom.’”

Where I would have liked more from this book is in the last quarter where Caro deals with her own illness and resulting disability. While her father had a story of causation “helping the woman with the luggage” that suited his needs, it seemed like Caro blamed living with constant stress caused by her parental abandonment for her MS, while at the same time denying a causation narrative. I felt like the story of Caro’s illness was rushed in comparison to the three-quarters of the book spent on her father—yet that’s the story the publicity for the book had me wanting to read.

[Neens West · Rating 4 out of 5]

Caro, the author, says in the afterword that her book had many iterations - changes in focus - over the fifteen year writing process. I think this is the only flaw of the book. It is evident that she's changed the lens many times over the course of its gestation, and it's come out slightly 'unbalanced' or should I say, 'not sure of itself' in terms of content chosen to be included.

The weight given to her father's story, consuming most of the first half of the book, has the reader thinking this is more a memoir of her father than of Caro herself.

The book could have been better balanced and made for a far more insightful read if more weight had been given to content surrounding her mother. Perhaps it was a statement of the author to NOT include much of her mother given their soured relationship, but I think it is a failure on the editor's part not to have advised Caro to do this.

Many people love Kate Llewellyn's (her mother) writing and find her beguiling and we who do hanker to know more about her creative world. The subject matter would be gold.

That said, I loved the courage of the telling of this memoir. There was much to relate to (being same age and gender of writer) but equally so much was so foreign. It was honest and not all the writer did was easy to accept (leaving son as a teenager to go to NYC). And yet so much of what she did was nothing short of heroic.

I send this author my best wishes for sharing her story so eloquently and giving us a deeper insight into resilience in the face of adversity. Go well Caro.

[Alanna Inserra · Rating 2 out of 5]

This memoir inspired ambivalence. Perhaps because it is false advertising? The blurb markets this memoir as one where the author “discovered her own grit and...a way forward, rebuilding her life” following her diagnosis of MS, against the backdrop of her father’s disability caused by polio. However all the profound insights were contained in the books first chapter, and it was only the last 50 odd pages that actually recounted Caro Llewellyn’s struggle with chronic illness (and almost all of that was about diagnosis, not resilience and rebuilding). The 230 odd pages in between were the memoir of a chaotic and difficult childhood and teenage hood, and Llewellyn’s impulsive whirlwind marriages and romances throughout her 20s.

The pacing of this memoir could use some work. In the space of about 18 pages Llewellyn falls out of love with her first husband and leaves him, remarries, buys a house, falls out of love with her second husband, cheats on him, and decides on a career change. At times it felt like a frenetic recounting of events than a carefully constructed memoir. Llewellyn’s childhood and family relationships - particularly with her mother and stepmother - were drawn vividly. This memoir would have been more accurately marketed as being about family, freedom, and societal expectations rather than disability.

[Jessica · Rating 5 out of 5]

In the first few weeks of quarantine, I was too anxious to read. A book that began with a 20-year old man being confined inside an iron lung machine didn't seem like the book to attempt right now. And yet. I watched this man--the author, Caro Llewellyn's father--fall in love and build an art empire and gaze at the sea and raise a human I am lucky enough to have worked with in the book world of New York. Caro's own journey from Australia to London to New York to Paris and back again made me forget I was stuck at home and remember the world as it was: full of leaps, if you're brave enough to make them. A beautiful story about the strength we inherit from the people who raised us and a reminder that sometimes, the greatest act of love is going off on our own to become the people we were meant to be.

[Carolyn]

I read half of this book but was disappointed for various reasons. I expected it to be about Llewellyn's struggle with MS but although her diagnosis begins the book, the memoir then turns out to be all about her father and the way he dealt with life in a wheelchair after being affected with polio when in his twenties. Yes, the father's story is inspiring in itself but there are many such stories and this one is not told in any way that made it memorable. The writing was pedestrian and I wondered why it was shortlisted for the Stella Prize. I've read all the others (except, as yet, the winner) and didn't think this was in the same class at all.

[James Whitmore · Rating 3 out of 5]

When Caro Llewellyn’s father Richard was 20, he became one of the last people in Australia to get polio. Perhaps at least partly due to the healthcare system’s negligence, the disease took away movement and feeling in his legs and most of his arms. With little disability support available in the ’60s, Richard had to rig his own workarounds in a world built for able bodies, using his considerable charisma to seduce a young nurse into marrying him. Read more on my blog>

[Averil · Rating 4 out of 5]

This book came to me via the Stella Prize longlist this year. I didn't really know who she was, but the name was familiar. It describes her experience of being diagnosed with MS (no spoiler, we learn it on the first page pretty much) and delves back into her father's paralysis from polio as an adult. I found myself fan-girling a bit as she quietly name-drops Salman (Rushdie) and Philip (Roth) as good friends. It's a good autobiography and covers a lot of difficult topics in a reflective, candid and philosophical way.

[Heather Boundy · Rating 4 out of 5]

A compelling memoir of a woman struggling with a diagnosis of MS whilst at the peak of her professional career. Running international literary festivals in Australia, US and France Caro meets many interesting and world-renown authors (her friendship with Phillip Roth is enlightening) The biggest influence in her life, though, has been her father Richard, who contracted polio as a 20 year old and spent the rest of his life in a wheelchair. He was determined to fight for the rights of the disabled and became a well known advocate and speaker on their behalf.
A brutal and vulnerable story...

[Abbey Berning · Rating 1 out of 5]

I picked this up hoping to understand the emotional impact of an MS diagnosis, but most of the memoir focused on the author’s family history and didn’t delve deeply into her own experience with the illness. I respect that not every writer wants to expose their most vulnerable moments, but I did feel a bit misled by the framing of the book, and I was hoping for more personal reflection.

I wouldn’t have classified this as a memoir, but if you like biographies, you might still like this. I personally do not have an interest in biographies or family stories of people I don’t know.