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.