Night Shift is Jonathan Totman’s debut poetry collection, published by Pindrop Press in 2020.
I attended the online book launch earlier in the year for Night Shift and was left, as is only right with these things, wanting more. I am grateful to Pindrop Press for sending me a review copy.
Night Shift reads as a series of fragments, glimmers of light seen through slices of air. And yet, with each slice, sits a whole fat fully formed image – one I can’t always put my hand to but that has a distinct clarity of feeling. Night Shift is filled with the unspoken, of glances and sensations, illuminated through Totman’s song. I read Night Shift as an entire narrative, of changing seasons and exploration of life and death. It is not complete, and does not seek to be, nothing is pinned down or certain. It is written in the spirit that there is always more to come as life continues. It is written with a sense of circularity, with links and connections bouncing across and through each poem.
Totman shows the reader a world of endings and melancholy, as he deals with the fragility of life and loss, with the death of his father ever present. It is a world also of possibility, of new growth and joy, as memories are embedded into rhythms and rituals of continuing life, and as new form is brought in to the world with Totman’s own growing family.
Totman relishes in the natural world, bringing it up close, dealing with how we are all a part of, and are, nature. Bulbs grow in bellies and mist and dust return to the earth. He uses the cycle of the seasons to show the precarious possibility (and certainty) of life and death, our embedded roles within, through grief and joy. In the first poem of the book Marcescent, the tone is set:
Totman also embraces the domestic and the ordinary, of commuter journeys and baking scones, of first blackberries squashed in new fingers and deliberations on garden borders, each time echoing and bedding in voices and a sense of before. Family rituals continue year on year, with a sense of perpetuation as well as transformation, with memories forming the shape of what is lost but still present. The intangible is held close with golden threads weaving what was into what is, and what will be.
Totman is a skilled observer of nature and people, of the power of the incidental, and the barely mentioned that fills the white space. He brings sparkle to the domestic in a way that reminds us to take nothing for granted, but that if we do, that’s part of life too.
Awarded an Arts Council England grant to spend four weeks at a rehabilitation centre in Budapest, Sanatorium is Palmer’s account of this time. It follows her experience of water related therapies, massage and exercise, designed to strengthen her muscles and ease the chronic pain she lives with. Surreal and sensory accounts of water are woven into her experiences of land locked life at home in London, where she attempts to recreate the water therapy in an inflatable bath in her flat.
Palmer’s writing is seductive, the narrator’s voice immerses the reader into her world of visions and sensations, of the body and out of it. Palmer writes of her routine during the four-weeks of sulpherous pools, corridors, buffets and orchestras, while her home life is filled with equally sensory and surreal visions and out of body experiences. And yet, Palmer’s voice is a relatable one. There is a clarity of thought which leaves space to wander and lose all sense of where and who she is. It drifts between physical states through lyrical passages of submersion and flotation. There are regular experiences of floating, of sinking, and of grappling with her own physicality. The states of physical and meta physical are so well drawn, they capture an essence of what it can be like to not be of this world while your body is firmly under the influence of gravity.
The strength in Palmer’s writing
holds the reader while she tells you of some of the most vulnerable times in
her life, of how vulnerable you are as a disabled person, reliant on the care
of others. Palmer’s arthritis and connective tissue disorder means that her
body is more fragile than most, incidents of excessive ‘care’ or more exuberant
treatments leaving her in greater pain are a silent constant, be it the red raw
rubbing of her skin in the bath from a carer or the pummeling in the water of
the clumsy physiotherapist, it is an irony that those tasked with her treatment
are more than once the cause of her pain.
It is a careful balance that takes
time to learn how to navigate, asking for and receiving help in a helpful way.
It is not straightforward. The author shows the reader deftly how well versed
she is in this, and yet others continue to lack, leaving her again in pain and
worse off than she would have been without them, while her reliance on others
is a constant. It is perhaps a universal truth for so many with disabilities
that you need to become your own expert while not undermining those tasked with
The curious setting of the sanatorium in Budapest, and the inflatable bath in her flat in London make for an intensely interior experience. The hotel setting is a strange and at times intimidating experience, not least for the narrator’s isolation – long corridors and intrusive and invasive others create a sense of vulnerability beyond the immediacy of the body. It feels more than a little sinister at times, echoing the corridors of the hotel in The Shining. The interiority of the book adds a layer of suffocation and constriction to the experience of the narrator, it is isolative even when amongst others – capturing a potent glimpse into what it’s like to inhabit the hotel as much as it is to inhabit her own body, both of which feel that they could be of another time and place.
Where the reader meets some of the other hotel occupants, they are drawn sparsely and with economy, but vibrantly, as is the scene setting throughout. There is a surreal nature of people and place that layers beautifully along the fluidity of the internal and external world – the reader drifting in and out of her own consciousness.
Stories of what might be domestic and
mundane are not, as Palmer has such an attentive view on all the small things –
as perspective shifts when living with chronic illness, they are just as important
as the focus on other aspects of life. Her plants on the balcony in London are
captivating, but bring great peril – watching her lemon tree under attack, as
her own body is, a whole performance is played out as parasites arrive and
multiply, and attempts to save the tree are pursued.
The details are exquisite and dense with colour, as the author attends a party in heels that she knows she will later suffer for, to enjoy some time of feeling normal. Of being in the bar with other women talking about men and the postcard pictures painted in sketch form are as large as life as any fully constructed painting.
After Sarah Manguso’s The Two Kinds of Decay, Sonya Huber’s Pain Woman Takes Your Keys, and after a year of publications that include Sinéad Gleeson’s Constellations and Anne Boyer’s Undying, Sanatorium adds to this beautiful and poignant collection of women writing their experience of their bodies in raw, poetic and unapologetic forms. They are, as well as being captivating and brilliantly readable, also allowing us to begin to rewrite the narrative for women who experience chronic illness and disability, of what it is like to live in our bodies. This gives me enormous hope for the future. Since Susan Sontag wrote Illness as Metaphor many have followed, I have renewed hope that dialogues and language on illness can become more nuanced and complex, that medical misogyny and gender bias will change, but only with continuing to rewrite these narratives, and more crucially, for them to be heard.
One section that captures so much of
the experience of these strange and complex conditions is held in this short
“I’m doing all this exercise, but I have all these underlying fears. Am I making the right decisions? Am I being given the right advice? You go through life as a chronically ill person with so many different people who have so many different opinions about how your treatment should be. They’re not always useful or right. You have to build your own narrative and your own sense of what feels appropriate. You have to learn to trust your body to tell you what’s working. But that’s hard too, when your body keeps changing the rules.”
There are so many parallels that I
relate to here: of chronic pain, of chronic illness, of living in an
unpredictable body, that others around you do not trust your word and where
navigating your own physical limitations also means teaching others around you
as you learn too, to help support you, to stop undermining you – to be endlessly
learning and endlessly preoccupied with your own physical functioning. This is
a timely and pertinent publication.
In coming to the end of Sanatorium I am left with a heightened
sensory awareness of things that appear in fragments: the hardness of Palmer’s
kitchen floor pooled with water, the smell of the sulphurous pool in Budapest,
the sounds of the orchestra, and the tastes of the buffet in the hotel dining
room. They are as real and peculiar as anything Palmer experiences. This is a
beautifully constructed book full of important thoughts, lyrical poetry and prose,
and stunning imagery that immerses the reader entirely.
This is an extended version of a book review written for Spooniehacker at the time of publication.
Abi Palmer is an Artist, Writer and Zinester based in London. This is her debut book, published by Penned in the Margins, exploring the queer female disabled body. Palmer has exhibited her work Crip Casino at Tate Modern and Somerset House and can be found on Twitter and Instagram @abipalmer_bot and here.
This is the guide book, the
instruction manual, for anyone left in any doubt that nature is essential to
our very being – it is our very being. We cannot be separated. And the impact
of having been so disconnected continues to play out.
Losing Eden is a much needed book. It shares with us, in accessible and compelling form, the science behind the necessity and relevance of nature. What Lucy Jones does so beautifully, is to tell us why nature is important, how it is important, and the specific impacts it has on us – whether we are aware of them or not (and often, not). The extensive research behind this book is of the microbes in the soil and the ions in the air, and how we are beginning to understand why being outdoors is so beneficial to our health.
What this book doesn’t do is tell us that nature cures. Jones is clear on that. What helped her through alcoholism and post-natal depression was time spent in nature, yes, but also her AA groups, her family, her friends, her therapist, psychiatric team, and medication – these are the things that are often overlooked (or harder to acknowledge). We sometimes need a whole heap of scaffolding to get us to the place where we can even open our eyes and see what is in front of us, let alone get to the forest. And walking in the woods is not accessible for us all, but connection with nature is valuable and possible for many recovering from illness of one kind or another. And perhaps it is when we break that we have the chance to look around us and start to see things anew. These are the times we get to notice the awe and wonder in the small and everyday.
Growing up in rural Kent, I was lucky to have developed a language of engagement with the natural world from an early age – while climbing trees and making camps. It is a common experience, however, to lose it again, to have to move away from the country to the city for work, study and housing. Priorities change and we become more distant from noticing what lies in the undergrowth and the flight of the song bird. Rush hour, weekly shops and school pick-ups over take concerns of seasonal change.
I have reconnected with nature several times in my life. Living in Birmingham, emerging from the fog of depression, I walked my dog across Sutton Park daily. It was a meditation, a stubborn unthinking path, until it wasn’t and it became a choice and a pleasure, where I began to notice the brilliant yellow of the gorse and smile as I heard it ‘pop’. But this, also, only came after the SSRI’s (selective serotonin reuptake inhibitors – anti-depressants) kicked in, and I could venture outside at all – and for both, I am truly thankful.
Nature will heal, nature cures, nature will treat all our ills. It’s a current vein of thinking, one found perpetuated endlessly. I fear that the health services we also need get lost (and that increasing cuts will go unnoticed). It frustrates me that such a simplified view of things, specifically of mental and physical illness, is touted so broadly and so frequently. And yet our natural world is important, now more than ever. The places we spend time in are important, and our connection to them crucial for our and their welfare. They reflect things about us and interact with us in many ways we will not necessarily be conscious of. Yet there is greater nuance and explanation behind the claims that regularly get lost in a world of click bait headlines, nuance that Lucy Jones negotiates effortlessly.
What Jones’ research shows is that nature will promote a speedier recovery. In hospitals it has been shown that the view you look out at from your post surgery bed is important. A view of a tree blowing in the wind leads to a shorter hospital stay with fewer additional pain medications, as compared to a view of a brick wall. There are potential findings with implications for improving the immune system, reducing inflammation and reducing symptoms of stress, depression, and PTSD. Is nature the panacea we all look for elsewhere? What would our health and society look like if we lived life long with a strong connection to the natural world around us?
In Losing Eden, the author shows the complexity of these interactions with a beautifully constructed narrative of the vast research that has been conducted on many and varied fields of study. It is compelling and comprehensive. Most importantly she shows us that there are numerous ways of connecting with nature – from plunging fingers into earth to more passive activities of looking at films and photographs, and many more in between – and all have a benefit when compared to connecting with non-organic forms. There is more research to be done, and extrapolating the difference between these different strategies I suspect will be key.
of the aspects we lose without a relationship with the rest of nature is
regular opportunities for awe. We might associate awe and wonder more with the
naivety and innocence of childhood – wow, says the child who sees an octopus or
snow or fireworks for the first time – but new research suggests it’s far more
potent in adult life than we might think. A new area of research – the science
of awe – explores the specifics of how natural phenomena makes us feel, and
could have significant implications for our mental and psychological health and
even how nice we are to other people.”
There is much in this book
that feels like it should be common sense and common practice, and yet in so
many ways we have travelled so far from working within the natural world,
having spent so long seeking to conquer it or overcome it, rather than live in
it and with it, that it seems we now need to learn how to reintroduce ourselves
to nature, and I suspect it is easier for some than others.
fact that we are attracted to moving objects or landscapes that are pleasant
and beautiful may seem obvious, but, as Wilson writes, the ‘obvious is usually
profoundly significant’. A landscape isn’t just nice because it’s nice, but
because its meaning is ‘rooted in the distant genetic past’. It may not be
ground-breaking to say that most people would prefer to look at a tree than a
pile of dead leaves, but then consider the boxes we trap ourselves in, and how
rarely, now, we seek the abundance of natural diversity. If it is so obvious
why aren’t we doing more to protect the living, breathing, running, squirming,
jumping, dancing, spinning, growing natural world?”
Questions around who is
consulted and who engages in conversations around planning and conservation are
also important ones to ask. Jones raises the issue of who owns the land, who is
it for? Who can access it?
There are also many alarming things Jones names – prisoners are allocated more time outside than school children, for example. I am not aware such guidelines even operate in hospitals and residential homes (although I am very happy to be corrected – I did not encounter anything in my years working in psychiatric and forensic settings). Yet the rise of forest schools is showing a positive impact on things like knowledge and connectedness to the natural world, on confidence and happiness and social skills. The long-term effects are yet to play out on this next generation and this will be an exciting development to follow. For the rest of us, and others in institutions of one sort or another, I hope these things can filter through in different and creative ways, that make nature and its benefits accessible to all.
Recovering from post-viral fatigue, it is the outside that I befriend again as energy allows, as if it (and not me) gets lost when life becomes busier. Perhaps it is only when we break that we can slow down for long enough to notice the things that match our pace – the snail and the emerging buds and blossom. I hope this does not always need to be the case.
How do we create environments where this becomes everyday, an integral part of any design, of any aspect of life, embedded in our fabric? I urge anyone to read this book, it feels like a starting point to how the world must now be structured.
Losing Eden: why our minds need the wild by Lucy Jones is published by Allen Lane. It is available for preorder and out on 27th February.
Louise Kenward is an Artist, Writer and Psychologist with many years working in the NHS as psychotherapist and psychologist with substance misuse services and mental health teams – both with in patient and community settings. Recently diagnosed as hypermobile (a connective tissue disorder) Louise is also learning to manage ongoing fluctuations in energy and chronic pain, her work often referencing connection to the sea and the experience of the body in landscape.
The Electricity of Every Living Thing: a woman’s walk in the wild to find her way home by Katherine May. Published by Trapeze, 2018. Out in paperback May, 2019.
This is a book filled with
gold. Beyond the glittery lines that dart across the cover, golden threads are
echoed within the text. The illustration on the front of this newly published
paperback edition represents the electric charges the author feels in
everything that surrounds her – her body a conductor to them all. The gold in
the text is the sharp and direct writing that illustrates in fine and very
human detail, the breadth and depth to which autism has impacted on the
author’s life. The Electricity of Every Living Thing shines light into the
inner most world of a woman who has grown up and travelled through life being
dismissed and disparaged by teachers and doctors alike, while adapting to and
tolerating a world that painfully jars at every turn.
Believing she just couldn’t cope as well as other people, May developed a careful and thoughtful system of navigating her world, copying those she thought dealt with things better than she did. This worked really well in many ways – right up until the points when it didn’t. For May, this latest point was having her son Bert, and all that brought. The unpredictability and high demands of a new baby and the physical changes that impacted on her body, and May was again feeling that she just couldn’t cope. It left her confused about why it seemed so much harder for her than it was for other mothers. It was different. But with a lifetime of asking for and being denied help, she was reluctant to pursue this path again. It laid the foundations for something else, something that began to stir while listening to a radio programme in the car one day. It was more than stirred when the insensitive interviewer asked about how challenging romantic relationships could be for autistic people. She was silent no longer:
fucking dare you? We’re not completely repellent, you know…”
And in that moment, May heard
herself say that one small word: ‘we’. Aside the ineptness of the host, she had
heard enough to sow the seed in those rich foundations of seeking answers and
understanding to begin to want to know more. She had begun to recognise something
of herself. But what a blow – it’s a lot to take in and to take on, a diagnosis.
Even more, it’s a lifetime of beliefs, of stereotypes and misunderstandings,
all of which need to be undone before a new sense can be made. And this book documents
that, offering a new script to her story – one she has claimed for herself – and
with it, a window for others to see into, to understand better. It charts the
progression of her walking through seascapes and countryside as she reconsiders
her sense of self. It is a skilfully written description of the world as May
experiences it. A treasure trove of insights into what it can be like for an
autistic person. It is also much more than a book about a woman who learns
With an initial plan to walk the South West Coast Path in its entirety from north to south, May set out alone. Woefully unprepared for the physical demands and geographical challenges, she had a need to be outside, to be by the sea, and to walk. Living in Kent, this meant regular weekends away and a series of family trips to the west coast. Living in Kent, and having always lived in Kent, the author begins to explore her home turf on foot too, and begins to walk the North Downs Way – in part with an increasing need to walk and in part a re-orientation of herself, finding her path and finding her place.
“…to know the full extent
of my world; to trace its boundaries with my feet; to take the longest, hardest
May is drawn to the coast. She writes of the importance of this to her and creates the atmosphere of the south east and west as she writes and walks. There is a kind of mirroring in the book – a rhythm of looking outwards and inwards that is reflected in the worlds between Kent, Devon and Cornwall. One place shows up things about the other, each giving her a different kind of space. She learns more about her own home county that she had never thought to question before, the familiarity of place we learn to accept when we’ve always lived there. Going away shifts this, the dislocation felt at home is shown in her early walks in Devon as she gets to grips with the coastline and the weather, and the physical demands of each.
The Electricity of Every Living Thing gives an account of challenges experienced as an autistic person. It also gives a very frank account of challenges as a woman, a mother, and more generally so, what it is like to be human. May has the sensitivity and skill to be able to see these things and write about them in ways that make the reader see them anew, without airbrushing flaws and vulnerabilities.
The freshness of the writing
matches the honesty of May’s descriptions of her internal world. In search of
some peace, she is confronted not only with the harshness of the natural world
and it’s weather but also with her own thoughts and memories. Spending time in
the outdoors, alone, with so much space for reflection it seems inevitable, that
she is confronted with herself. The empty space craved, to replenish and
recuperate – an escape from the busy and hectic, from the day to day mundane –
and it is us we are left with, curses! She had not escaped, as intended, but
thrown herself headlong towards herself – into the most unforgiving of places to
In the early chapters May writes of the endless times she cursed herself, cursed the weather, and cursed the world for the path being so bloody hard – for life being so bloody hard – and for her not to have known, to have prepared better, to be better at coping with it all. Her husband, H, and 3 year old son, Bert, make regular appearances as her (usually) reliable back up crew and support system, in joyous and infuriating ways.
Navigating a tricky path, not
just of the jagged rocks and sheer drops of the coastline, but also of her own
vulnerability and resilience, May shows a sharp wit, articulate voice and awesome
ability to swear loudly. Her self doubt and pain is powerfully shown when
seeing herself through the eyes of others – hearing herself described as
‘intense’ and ‘Marmitey’. I think of the fragility of the coastline and all it
withstands, it is a pertinent parallel.
The South West Coast Path is
undoubtedly a tough walk to take, and perhaps this is the reason that May chose
it, and why it becomes such a hard space to be alone in. If you can be at peace
in such a brutal and exposed place, perhaps then it is possible to be at peace
Katherine May shows us how
fallible she is, how unprepared she is and what she discovers as she does it
anyway. This is a testament for us all, none of us really know what we are
doing up until that point of learning and discovery. There is no preparation
for life, for motherhood, for finding out you are different. These are some of
our greatest challenges as human beings. There is probably some preparation
that can be made in setting out on the South West Coast Path, but it’s
essentially through the doing that learning happens. And we learn and develop
and adjust to our environment. May had spent many years of her life attuning
her social skills, adjusting to the world around her – often to her own
detriment. It was now time for her to stop and to see what would happen.
Drawing on the understanding
of place from other parts of the world, she lands on an understanding of
territory from Aboriginal culture. This weaves ancestry, landmarks and walking
routes. May is tracing and singing her own songlines. She is rewriting and
reframing her experiences and taking up the space she needs in which to do it.
After learning to be away she begins to learn to be able to stay. Things get
rearranged, everything finds its fit and a new place is made.
The reconnection to place made back in Kent, is also done through walking, through finding the new in the familiar. Referencing other writers throughout the book, May brings a wider sense of place – the cliff tops and sea birds, rock pools and beaches sit alongside the people who have inhabited these spaces, and those she meets and spends time with along the way. Through this to and fro of place and space – from internal to external, and west to east – May finds that her feelings become clearer, that her sense of herself and her place in the world settles. An attempt to find a name for this thing that has always made life so hard, the word ‘autistic’ gives her a clarity, and perhaps a kind of permission to be all the things she has always been. It’s an explanation. This new word helps to understand. She has by now become pretty adept at dealing with it, but a name gives her a place to put these things – to find a place for them and for that to be ok.
Overcoming her years of being
dismissed and discredited as a witness to her own experience, May learned that,
not only is she dealing with much more than someone who is not autistic (neurotypical),
but that there are aspects of her experience that are shared by many, and there
is support and strength in the discovery of this new community. As might be
expected, in a walk of this kind, she does indeed come to an acknowledgement,
an acceptance, and ultimately a celebration of the things autism brings her, as
well as acknowledgement of the challenges it creates.
Within the humour, cursing and the beautiful writing, there is a very painful story told. A story of May growing up and finding life difficult and distressing, of asking for help and being dismissed, not just once but time and again. I am cut to the quick to read of appointments with GPs, counsellors and psychiatrists, regularly disregarding her concerns as anything ‘substantial’. These are not just contacts that have left her feeling that there is nothing that much to be concerned with, but professionals tasked with a duty of care who have actually told her this – professionals, utterly unaware of their own failings, their own lack of understanding and ability. Her last encounter with a sympathetic GP, one who has known her for years and is as surprised and thoughtful about her wonderings about autism as she is, is a joyous conclusion. This book will I hope be read by many practitioners, to become as much a part of their reading list as any text book. I hope it helps to bridge the gap between patient and doctor in the consulting room, while it will continue to chip away at the unhelpful and damaging stigmatising of difference in the wider world. This is something May has had to overcome – an additional burden to anyone receiving a diagnosis, the stigma a wholly unnecessary extra.
The Electricity of Every
Living Thing is a story of a life well told and it is a story that will connect
with many people, of autism yes, but also of the treatment by health care
professionals when they don’t know the answers, of motherhood and of reaching a
time in your life when you begin to reflect and question things more deeply. To
do this in the setting of wild landscapes that are relentless and without mercy
is a challenging path to take. Beyond all of these threads that weave
throughout the book, this is a brilliant tale about walking and being in the
“Everybody has a song like
this. A song that is a map, a compass: a song that sets you straight again.
Learn it, and it will take you home.”
Katherine May is an author of fiction and memoir, and an award-winning blogger. She has also published The Whitstable High Tide Swimming Club, The 52 Seductions (as Betty Herbert), Burning Out, and Ghosts & Their Uses. Until recently, Katherine was the Programme Director for the Creative Writing MA at Canterbury Christ Church University. She currently works as a literary scout for Lucy Abrahams Literary Scouting and reads for Faber Academy.
Constellations is a book about being
human. It is about being a woman in society, in Ireland, and a good deal more.
The politics and power of language, pain, illness, health, adventure, and love
are illustrated in these beautifully formed essays threading together Gleeson’s
personal experiences with that of other writers and artists in exploring the
strengths and weaknesses of our wonderful and fragile human form. The texts are
confrontation and celebration of these things in a brutal and honest way. There
is no apology, no sentiment here and it is all the more powerful and important
Gleeson has written a book that encapsulates so much of the human experience,
of life as a woman, as many women. It examines the pressure to conform, to have
children, to live a ‘good life’ as religion and society dictate. This wonderful
book follows a life rich with love and devastated by loss. Overarching themes,
however, are of the political nature of women’s bodies and the political nature
of illness – the importance of having a voice (and using it) and of having
autonomy over your own body and the implications when you don’t.
“Women learn early that absorbing pain is a
means of martyrdom making us closer to the bodies of saints as if discomfort
equates to religious ecstasy. That there is meaning in suffering, except when
there is not.”
series of essays dismantles the body to it’s component parts, and rebuilds it
again, with all our wonky quirky bits as memories of experiences endured –
bone, blood, hair, pain, love – things that bind us. Gleeson shares stories of how
confronting our bodies can be, to us and other people, and she names the things
that need naming. Taking us through history and across disciplines – including
the arts, religion and science – Gleeson highlights a history also, of
language. Euphemisms and words dressed up are rarely helpful, they leave more
questions and uncertainty. Language should help to clarify, for words to give
detail – not to be hidden behind.
is a celebration of life and a celebration of all of those who have gone before
us, to save, renew, and extend lives in blood transfusions, chemotherapy
treatments, and hip replacements. It scratches the surface of past traditions
and beliefs connected to the body and its various component parts, and what
happens when they don’t work in the way we expect them to.Constellations shows the reader also, how these things define time
– there is a ‘before’ and an ‘after’, and perspective alters with this. It
affects us in ways that cannot be anticipated, and it is rarely exclusively
Aged 13 Sinéad Gleeson learned quickly to be embarrassed of her body and its awkwardness, not just because she was now a teenager and attitudes and attention in society shifted as her body did, but at 13 Gleeson also underwent a major operation on her hip. A year of recovery, using crutches and absent from school and she became acutely aware of an emotional as well as a physical discomfort.
“I wanted to make myself smaller, to minimize
the space I took up. I read that shrews and weasels can shrink their own bones
scars from this, and subsequent operations and injury, remain a physical trace
on her body. Gleeson’s scars and implants of metal fixings are her starting
point, the title a reference to these. The stars and planets that twinkle in
the dark, lighting up the night and fusing time – a reminder of what has
passed, of what has been endured, of what she has recovered from. We are, after
all made up of stardust.
“Our bodies are records – traces of all they
have weathered are held in scars.”
stories of her pregnancies and hip replacement are told by her body, not to
mention the traumatic removal of her body cast where the doctor ignored both
her and her mother’s cries to stop when the rotating saw cut through, not just
her cast but into her legs.
on bone, hair and blood, elements we all share, are beautifully constructed
essays exploring these elements through time. Gleeson writes eloquently on the
significance and power of each of these elements, illustrating her own life
threatening conditions. Blood, all the more significant, as Gleeson writes of
her diagnosis with leukaemia, her bones and her blood threatening her life and
causing great pain.
“This may not be war, but there are two
sides. The well and the unwell; doctors and patients…
…This malfunctioning version of me was a new
treasonous place. I did not know it, I did not speak its language. The sick
body has its own narrative impulse. A scar is an opening, an invitation to ask:
‘what happened?’ So we tell its story. Or try not to…”
is key, both physically and emotionally as Gleeson endures, not just illness
and injury as her body lets her down, but medical abuse and pain at the hands
of the doctors served to treat her. The excerpts about medical abuse and
medical ignorance are pertinent and powerful. Reflecting on her own
relationships with medics and experience of being a patient important conversations
are opened up – the imbalance of power, the role we are ascribed to in getting
sick, our lack of voice. These are important, indeed crucial conversations that
must be had between medics and clinicians and their patients. For further
medical abuse and neglect to change these are key dialogues to be had. Gleeson
highlights an observation of how those invested in their own treatment are often
viewed as “transgressive” – this will resonate with many who have complex
illnesses, illnesses that are not yet understood or not yet diagnosed –
patients who arguably have more knowledge and understanding than their GP’s
tasked with treating them. Learning a new language to navigate the departments
and medical professions to get the treatment they need is not always celebrated
as an engaged and proactive patient. The experience of illness is a political
yet, there are also acts of great warmth experienced in hospitals. Writing of
one consultation with a nurse:
“Her voice is matter of fact and professional
but there is kindness too, almost imperceptible. Patients are so attuned to
these small gestures that we notice. They matter.”
is a book of humanity and humility. Pain and illness will affect us all, if it
hasn’t already. It is a great leveler and yet is perhaps least talked about,
the burden that comes with it silencing us with shame. Having experienced this
at an early age Sinéad Gleeson breaks its power through naming and sharing. She
writes clearly and elegantly about what it is like and how others impact and
affect us in these, our most vulnerable times. She reflects on the life and
work of Frida Kahlo who painted “in
absence of words for pain felt” as “the
physical experience resists words, refuses to reside within letters. They fall
short.” Gleeson gifts us with her own words.
“Pain is a reminder of existence, bordering
on the Cartesian. Sentio ergo sum: I feel, therefore I am. Some translations
suggest Patior ergo sum: I hurt/suffer, therefore I am.”
and writers and artists who dwell on illness and imperfect bodies, examine the
experience and the physical presence.
“Hospitals are not unlike galleries.
Interactive spaces; a large installation of sound and colour, evoking emotion
and working on the senses…[while similarities continue] between the work and
approach…of physicians and surgeons, and painters and sculptors.”
Constellations explores the foundations of life and what it is to be human, and
yet it feels revolutionary. When one in five of us are disabled and many more
will experience failings in our physical health at one point or another, this
is an inevitable and uncomfortable truth. There will be few people that go
unaffected by profound and life impacting conditions. Those of us who
experience these conditions experience also the burden of shame and stigma.
This keeps us quiet and serves only to exacerbate distress. It is frightening
to us and to others around us when human frailty is exposed. It is only with
its naming that understanding and acceptance will come, in time. This is not
the experience of the few but the many. At a time when disability, chronic
illness and the burden on society has become so political, and such a commonly
referenced headline, this is the antidote. Being vulnerable, as we all are, is
key to our survival, but it can be the most challenging thing to endure.
takes us through our life cycle, from birth to death and the many steps in between.
Touchingly Gleeson dedicates the last essay in the book to her Godmother,
Terry, an incredible woman who spent her latter years fluctuating in and out of
this world. Living with dementia, Terry is portrayed as a woman of importance
and meaning throughout, her memory sustained by this essay and Gleeson’s love
for her, even when her own memory was not in her grasp. We are shown a way of
leaving this world where compassion and love endures, of having scented oils on
our pillow, candles and daises by the bed, while being read to, cream rubbed
into hands. The power of touch, the importance of thought and kindness, even
when – especially when – our world is coming to an end, when we cannot be sure
if a person has already left us, before their body has died.
the discovery of Gleeson’s diagnosis of leukaemia, in an attempt to quell the
fear and distress of her parents, she proclaimed:
“I am not going to die. I’m
going to write a book.”
she did. And it is beautiful.
“To commit to writing, or
art, is to commit to living.”
These are words I hold close, this is a woman I would like to know. She has done what she promised, not died but written a book. Constellations is a gift for humankind as we navigate our physical frailties, and the things we cannot choose. It’s author tells us there are other choices that we can make and this book shows us that is possible.