More than a hundred days after collecting a hundred oceans and I want to reclaim the tide. I’ve been buffeted and hurled about in the surge of the storm. The swell carves new outlines. Clarity of light shows new colour. Shape is moulded and chiselled and everything sharpens.
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:
“How 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 she’s autistic.
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 way round.”
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 navigate difficulty.
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 anywhere.
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 outdoors.
“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.”
For anyone reading The Electricity of Every Living Thing and with more questions about autism, Katherine has put together a number of resources here: www.electricityofeverylivingthing.com/resources
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.
A trip to Cuckmere Haven. It felt bold and exhilarating. I needed to breathe new air. I needed to be elsewhere.
I had connected with the slow moving, meandering nature of the river that winds through the valley on a previous visit. Eighteen months ago I had walked its length to the sea, but felt exhausted by it. I had pushed myself to reach the destination, pushing further to get back again. Looking back it is a memorable moment, a clue to my incubating illness and my own denial of it, or just a lack of recognition.
A short while after recognising my need to again rest, to recuperate at a rate that my body will allow, my thoughts – when they returned – remembered Cuckmere Haven. It is taking the path of least resistance, I thought. It is going as quickly as it is able. This is the most direct route. it resonated with my own limited levels of energy, of the importance of holding on to a belief that, no matter how slowly I am moving, it is the best and most effective way to travel, to recover.
I didn’t get as far as the sea this time. I didn’t expect to. I wanted to be there, that’s all. To breathe new air and to check it still existed – like a toddler, I feared it may disappear if I could not see it. Or perhaps I feared that it was me that could disappear.
I collected a jar of water. Evidence. A memento – a sign to help me remember.
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 for that.
Sinéad 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.”
A 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.
Constellations 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 physical.
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 to survive.”
The 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.”
The 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.
Chapters 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…”
Survival 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 act.
And 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.”
This 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.”
Poets 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.
Constellations 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.
In 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.”
And 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.
Constellations is published today by Picador.
I measure my breath against the tide – it rises and falls with my chest. Inhaling salty air my lungs fall into step, it slows my stride along the shingle beach. Rising and falling, waves stretch and retreat – the breath of the ocean. My shoulders fall.
Debris coughed up scatters along the tide line, paths of seaweed and mermaid purses – the insides of the beast sprawl at my feet, signs of another world with new life. Undulate and thornback rays populate this stretch of water – small black leathery pockets show their inhabitants have hatched and fled their nest. Two smaller pale brown egg cases with winding tendrils tell me there are cat sharks out there too. What else cannot be seen but leave traces for me to find? Balls of dog whelk egg cases bounce around in the wind, their empty shells evidencing the life then lived, both ends of a life cycle captured on the same patch of beach.
I can only imagine what lies beneath my breath, what activity there may be below the surface of symptoms and absence – restorative and regenerating or simply treading water? When the tide will turn remains unknown, For now I shall continue to breathe.
The tide wipes it’s surface clean every 13 hours, an etch a sketch sweeping aside the marks made ready for new ones. It erases mistakes, lines drawn in error, in the wrong place: a clean slate, a fresh start, a new and perfect surface. And it arrives in a different colour, with a different sound, and a different texture every day. It shows me that I do not have to be the same, I do not have to be strong, or persevere or persistent, I just have to be – to come and go as the sea. What it brings with it, may be debris cast overboard, it could be treasure. Energy fluctuates, ebbs and flows. It is rarely noticed. The tide is in, the tide is out, you have to watch carefully to see it shift, to watch it turn. You have to be very, very still to notice the precise point of change. Time marks the spot, the precision of the clock calls the sea back to shore. Time: a curious beast. Fast and slow it marches, rhythmic and solid, unwavering, it just keeps going. My sense of it is very different. Time comes ashore, tries to ground me in routine, but light and dark, the moon and the sun, shift and swerve and another day is passed. I lose count, one day, two days, seven days. Time creeps up, like the wolf, it is stealthy, silent, hunting. Then it hits me, it’s been more than two years, more than two years of feeling like this, so long I have forgotten what it is like not to feel like this.
The ocean, immense and terrifying, I collect small amounts each day. I think it will make it less immense, less terrifying. This feeling of overwhelming and unremitting fatigue, I think perhaps the sea will help. If I can control the ocean surely I can control my own body. This frail, feeble, pathetic house of a person I am. Not even a shell, a shell is sturdy and protective, a shell is beautifully formed. This house gives way easily, buckles and folds without warning.
The sea: an unpredictable constant.
The body: predictably inconsistent.
Sculptures in the sand. Low tide, and evidence of what was before lies at my feet. I stand on the sea floor, as it was just a few hours ago. The beach is revealed. Regular and irregular bumps and dips, rivulets and drawings are left, messages from the sea I try to decode. Without words or emotion of its own, the sea is imbued with ours. Our thoughts and feelings, evoked by its presence, are attributed to the ocean.
I watch where I walk more closely, alert for patches of sinking sand, preoccupied with my own feelings of rage. Rage that has no where to go, rage that seems to serve only to erode my energy – a precious commodity I cannot afford to waste. The shapes in the sand are a physical trace of earlier activity. Seen in isolation, without presence of the sea or knowledge of the tides, I might marvel at its presence as a magical intervention, an elaborate artists creation. It seems all the more special and intriguing that it is made by the water. Shapes that look like trees, carvings and landscapes twist and form. It distracts me from my internal thoughts, temporarily at least. I return to imagine what shapes and sculptural form may be left on my own body by my feelings of anger, by my depleted energy. Muscles shift in tension and tone, blood pulses faster or slower, an inability to sleep causes crumples in skin, greyness and dryness on my face. Bruising appears from clumsy co-ordination, posture alters with pain and exhaustion. I want to scream at the sea and howl at the moon, but these are more things that will deplete me further. This ongoing navigation of what is possible and what is desired, what I can do that leaves me with enough to still have a voice. I need to hold a voice that will be heard, to unleash all that there is will push others away – a balance of what must be said and what can be tolerated.
The point at which the sea and the sky meet and disappear. This is how the world will end. A cocoon of fog enveloping the land. I walk out to greet it.