Beyond the High Blue Air

by Lu Spinney

When Lu Spinney's twenty-nine-year-old son, Miles, flies up on his snowboard, "he knows he is not in control as he is taken by force up the ramp," writes his mother, "skewing sideways as his board clips the edge and then he is hurtling, spinning up, up into the free blue sky ahead . . ." He lands hard on the ice and falls into a coma. This begins the erratic loss -- Miles first in a coma and then trapped in a fluctuating state of minimal consciousness -- that unravels over the next five years. Spinney, her husband, and three other children put their lives on hold to tend to Miles at various hospitals and finally in a care home. They hold out hope that he will be returned to them. With blunt precision, Spinney chronicles her family's intimate experience.

This is a story about ambiguous loss: the disappearance of someone who is still there. Three quarters of the way through, however, Spinney's story takes a turn. The family and, to the degree that he can communicate, Miles himself come to view ending his life as the only possible release from the prison of his body and mind. Spinney, cutting her last thread of hope, wishes for her son to die. And yet, even as she allows this difficult revelation to settle, she learns that this is not her decision to make. Because Miles is diagnosed as a being in a -minimally conscious state- rather than a -persistent vegetative state, - there is no legal way to bring about his death, a bewildering paradox that Spinney navigates with compassion and wisdom.

Encompassing the lyrical revelations of a memoir like Jean-Dominique Bauby's THE DIVING BELL AND THE BUTTERFLY and the crucial medical and moral insights of a book such as Atul Gawande's BEING MORTAL, Lu Spinney's BEYOND THE HIGH BLUE AIR is at once a portrait of the fearlessness of familial love and the profound dilemma posed by modern medicine.

Genres: Memoir, Nonfiction, Biography, Grief, Tragedy, Survival, Medicine

272 pages, Paperback

First published August 15, 2017

About the author

Lu Spinney was born in Cape Town and spent her childhood on a farm in the Midlands of KwaZulu-Natal, later moving with her family to the Indian Ocean coast north of Durban. After university, she left South Africa to live in Nice and Paris, before settling in London.

Reviews

[Rebecca · Rating 4 out of 5]

(Nearly 4.5) In March 2006 Lu Spinney’s 29-year-old son, Miles King, was on a snowboarding holiday in Austria with friends. On the final morning of the trip he took the fall that would leave this athlete, intellectual, and entrepreneur with a traumatic brain injury. The family brought him back to London via an airlift, and over the next five years he passed between various brain injury units and care homes. Eight weeks after the accident he opened his eyes, but given his minimally conscious state his only communication would ever be facial expressions and roars of frustration.

Pointless to mention just how sad this book is. Spinney tells her tale remarkably well, in a consciously literary style. With no speech marks and present-tense narration, thought and action flow lucidly into dialogue and daydream. She always chooses just the right metaphors, too. I would highly recommend this to readers of other illness and bereavement memoirs written in a literary style, such as Paul Kalanithi’s When Breath Becomes Air or Marion Coutts’s The Iceberg.

See my full review at Nudge.

[Amy Morgan · Rating 5 out of 5]

Thank you Edelweiss for my review copy of this book. Wow what a beautifully written and emotionally charged read. This story portrays the love a mother feels for her son and her fight to help him get well again after a horrific accident. The decisions she has to make in regards to what is best for him once she realizes how much he is suffering is unimaginable to me as a mother. The fact that she could do what she knew was best for him in the face of her pain of losing him and in the recent death of her husband makes my heart hurt for her going through this. This is a sad but beautiful tribute to her son and his life that was cut much too short.

[Paulina · Rating 5 out of 5]

Brilliant, heart rending, impossible to put down. I have to add, albeit a few months later that I cannot stop thinking about miles kemp. I have re-read the book 3 times..... I count my blessings, I realise life is short and precious. This book has become a bible in an inspirational way! Thank you Lu

[Heather · Rating 4 out of 5]

This book was heart-wrenching to read and only solidified my feelings about what is life and what is existence. The heart-break this mother endured losing the son she knew, always hopeful that the child she gave birth to, raised and watched grow into an amazing man, would come back to her. The reader shares along as she details her new normal of hospitals, carers, feeding tubes and spasticity.
This was a beautiful telling of a very tragic story and the love a mother has for her children in life and death.

[Marika · Rating 4 out of 5]

A memoir written about a son's tragic accident and subsequent death is not destined to be an easy read. It's not easy because readers will be able to identify with the author's journey as her son is first in a coma, then in a fluid state of consciousness, until eventually death. A compassionate, raw and intimate journey that no one ever chooses to embark on, but one in which the landmarks must be discussed.

I read an advance copy and was not compensated.

[Ellen · Rating 5 out of 5]

29-year-old Miles Kemp had always been an athlete and he loved the invigorating challenges he faced with snowboarding. While vacationing with friends in St. Anton, Miles did not hesitate to try the highest jump on the ski slope, uncharacteristically wearing a crash helmet for the fist time. His board hit the lip of the jump, he lost his balance and plummeted to the ground. Very quickly his condition became an emergency and Miles was flown to Innsbruck where he had surgery to reduce the swelling in his brain and was placed in ICU. His family, living in London, quickly assembled at his bedside not realizing this was just the first day of extreme frustration, despair, and a battle for acceptance of Miles' fate.

Miles' mother Lu Spinney never gave up on her eldest child. Through transfers to a London hospital, a prestigious brain institution, and finally a caring rest home, Lu watched for any sign that her beloved child was still there. And there were signs, not all of them good, but the family grasped at any tiny bit of hope. After five years it had become obvious to the family and many of Miles' medical team members, that Miles would never recover and that the bit of Miles that was able to register emotion clearly showed that he wanted to be released from his life. Since he was not considered to be in a vegetative state, the legal battle Miles' family faced was daunting.

This is such a difficult book to read. As a mother I cannot imagine the agony of watching your child face such pain, indignity and terror every single day. Lu is no saint; she certainly had her days of rage and self-pity, but she stood by her son and fought for him every step of the way. Another tragedy in her life must have nearly unspooled her, but somehow she overcame one grief to face another that would be inevitable. Read this one with tissues close at hand.

[Wendy · Rating 5 out of 5]

A touching and fearless memoir. The author shares her difficult journey with the reader, using such evocative language that she renders her plight accessible to all. She speaks of her experience in such a way that we are given at least a taste of what it is like to be in her nearly unthinkable situation. She discusses the thoughts feelings that people with disabled loved ones "shouldn't" have, reflecting the harsh reality of such an existence. Very good read.

[Rhonda Lomazow · Rating 5 out of 5]

A gut wrenching raw look at the heartache Lu&her family suffered when her son miles suffered a traumatic brain injury.in a horrible accident At times hard to read but at the same time an unputdownable look at her lovef for her son,

[Sue · Rating 5 out of 5]

Heart breaking - over and over again

[Shirley Freeman]

Well I read the ARC, not the kindle edition but whatever. I couldn't put this beautiful memoir down. Lu Spinney had a lovely second husband and four high-achieving twenty-something kids when oldest son Miles, age 29, suffered a traumatic brain injury during a snowboarding accident. Spinney begins by telling the story of his accident from several points of view - including Miles' - though that part was necessarily her imagination, based on deep knowledge and love of her son along with accident reports and reports from his friends. Miles was in a minimally conscious state, one step above a persistent vegetative state, for 5 years. Spinney's language is lovely and unflinching. The family hoped for many months/years that Miles would get better but it eventually became apparent that wasn't going to happen. It became clear to all who loved him that he preferred to die. It also became apparent there was no legal method for that to happen in England. Though this is a memoir of deep suffering, it is also a story of deep love, strength and hope.

[Linden · Rating 4 out of 5]

Every mother’s nightmare—Lu receives a call that her 29 year old son has been seriously injured in a snowboarding accident. She is in England, and she and the rest of the family hurry to the hospital in Innsbruck where doctors are trying to save his life. Is it possible that the adventurous young man with the Oxford degree will come back to them? Is this what Miles would have wanted? How many actually have an advance directive to make things easier if the unthinkable happens? Intense and at times painful to read, this memoir is reminiscent of Joan Didion’s The Year of Magical Thinking.

[Olga · Rating 4 out of 5]

Beyond the High Blue Air is a memoir about the love of a mother and her child. In this case, it is March 2006 and her oldest son, Miles, has gone on a backpacking trip with friends to celebrate his birthday. On the last morning of their trip, they set off to go snowboarding. There is a scene in which Miles prepares for this by purchasing a helmet. Miles lands hard on the ice, injuring his brain, and falls into a coma. He is 29-years-old, an entrepreneur and an athlete. That's how hospital staff refers to him as well.

The first thing, he says, is that you must never reprimand him for doing that jump. It was a brave and wonderful thing to do. He is a young man and young men should all go out and grab life in the way he did.

The family flies to Austria from England, Lu's husband Ron staying behind for a few days to give Miles's father a chance to be there without him.

The beginning and the middle of the memoir remain hopeful as Miles is transferred to a different facility, he's brought out of his coma, he opens his eyes, he exhibits signs of understanding the world around him. Through it all, the reader observes how Lu keeps it together - it's even referenced at one point - and how palpable her grief is she waits for her son to return to her. I say grief because Miles is neither here nor there but rather in a vegetative state. She is mourning her son while trying to keep him with her as well.

In this case we are talking about my son's life and as he is unable to speak for himself, I am his spokesman. Surely you understand it is my duty, my responsibility, to try to understand his situation?

The end is certainly no less hopeful, but in a different way. Lu tries to do what she can to ensure her son dies with dignity. Lu is Miles's staunchest advocate and supporter, arranging and re-arranging parts of herself and relationships with others to ensure that Miles is receiving the best treatment and care possible in his minimally conscious state (MCS). This means he was one step above a persistently vegetative state. The legalities are different in the United Kingdom. Had he possessed PVS, the doctors would have been able to remove his suffering.

I wish the memoir did a better job of indicating time markers, though in a way, it benefited the memoir since time is an abstract concept here. We flit between Miles's accident, his childhood, adulthood, and before you know it, five years has gone by since his accident. I also liked that Lu Spinney acknowledged her privilege through the memoir, about how she was able to pay for his treatment and other things. The end of the memoir is really what got me, after she has lost Miles and Ron as well, unfortunately. Two years into the accident, he passes away as a result of cancer.

The Diving Bell and the Butterfly is mentioned throughout. I could see remnants of it in these pages. At one point, it's revealed that the author and her son read it together when he was 13-years-old.

The memoir is a heartwrenching read, albeit very well-written and Lu's suffering as well as those around her is palpable to the reader.

[Jill · Rating 5 out of 5]

I received this book from Goodreads Giveaways in exchange for an honest review. Oh, my. This one is going to bring tears to my eyes. The author is a lady named Lu Spinney, and this book is about her son, Miles. At age 29 Miles had a terrible and very frightening snowboarding accident that left him in a coma and then in a state of minimal consciousness. This is their story over the 5 years after his accident. I'm a mother and I feel Mrs. Spinney's grief like an arrow to the heart. This book is about loss and grief, it's also about dying with dignity rather than being trapped in a state of minimal consciousness when hope of recovery is gone.

I will update this review when I finish the book. Mrs. Spinney has a very beautiful way with words and I know that Miles's story is going to stay with me for a very long time. Life can change in just an instant and Mrs. Spinney is a brave and compassionate human being for sharing her son's story. I already give this book 5 stars, it's very sad but so very raw and opens up a very important dialogue about what the humane way to allow a death with dignity for someone who we know would not want to live in a minimally conscious state after a traumatic brain injury. This book is very compassionately written.

I finished this book in one evening because I could not put it down. An amazing, amazing story. This is quite likely the most raw, angry, tender, compassionate, heartwrenching, sad, joyful, helpless, wondrous, honest, and brave account I have ever read about TBI/Traumatic Brain Injury. The best quote in the book? Lu- "the law is an ass." I have come to new insight about Do Not Resuscitate orders in cases like that of Miles. I shed lots of tears while reading. And Lu amazingly recalls a poignant event from her past as well as describing how while she was enduring this with Miles she was losing her husband to cancer. What a strong lady. She never takes the focus of the book off Miles but I appreciate her sharing bits of her life in the memoir, a life inextricably intertwined with that of her beloved oldest child. I think everyone should read this book. You'll be shaken and touched and have a brand new compassion for people with brain injuries and their caregivers. Ultimately, I'm too human to end this book without feeling very sad for the way Miles' life turned out. I admit, I cried, for those few frightening moments on the mountain that robbed him of his bright future, his dreams, all the experiences we all feel entitled to. His mother remained his warrior until he finally got his peace and relief. One of the most touching stories I have ever read.

[Ashley Wolpers · Rating 5 out of 5]

I won this amazing book through a goodreads giveaway and I knew it would be a gut-wrenching, have kleenex at the ready read (think worst case scenario/TBI/MCS) and I felt devastated for the difficult plights and indignities suffered by Miles and his family. PSA: Please treat everyone with respect regardless of their current state because we are all human beings and we all deserve to be treated as thus. The book reminded me some of Me Before You, but this book was a chronicle of Miles Kemps’ actual life for 5 years struggling with a debilitating condition and in fact his condition was even worse than Will Traynor’s. While Will Traynor’s condition as a quadriplegic was a terrible fate for a young man who valued his physicality so much at least he still accessed his fully-intact, working/processing/conscious brain, but the intelligent and witty Miles Kemp irrevocable lost his capacities. Before reading this book, I knew of PVS (Permanent Vegetative State), but had never heard of MCS (Minimally Conscious State). While PVS patients’ families can petition the courts for their right to die, MCS patients’ families lie in a murkier legal conundrum. Although their family member can be aware some of the time, without speech they’re unable to give consent nor consistently give responses to even the most basic questions. In Me Before You, I first heard of Dignitas and their services in Europe, but I never questioned the actual criteria they use to grant inclusion to their program. Not everyone can speak nor give consent verbally or ingest medication due to tracheostomies, etc. However, I think everyone has the right to die on their own terms and it breaks my heart knowing that Miles’ family was fighting for his right to die (after years and years of advocating for him for the best care) and would likely face years of legal proceedings to then have the courts rule against them. I’ve only focused on the legal aspect of this book because I have no words for the emotional plight of Miles and his family living a see-saw nightmare teetering between hope and despair.

I pray Lu Spinney writes another book because her storytelling skills are top notch and her strength and truthfulness are inspiring. Wherever Lu Spinney is out there please pray for her and her family for their struggles and loses and may their futures hold nothing but the best.

I’m sorry if I haven’t done this book the justice it so deserves as it’s just one of those books you have to experience for yourself.

[Francis · Rating 5 out of 5]

I picked up the book because I snowboards and am at the age when Miles had his accident. Lu Spinney's account of her son's painful deterioration was a touching story. At times I can relate. The part when Miles tried to communicate, and his best effort only resulted in whispers so light that Lu couldn't make out his words reminded me of a similar moment in my life. At times I could only sympathize. The scene where Lu gave Miles a "proper" hug at the time of his passing gave me tears. Although it was not clearly stated, I think Miles ultimately was able to end his own life by giving in. I'm glad that burden did not fall onto his family.

[Vanessa · Rating 5 out of 5]

I read this memoir to see if I wanted to include it in a course I am creating and will teach in the fall. Given it is the author's only book, I had low expectations for the writing and thought it would be just another "story" like so many families I've worked with throughout my career. It is not. The author is a vivid writer, sophisticated and intelligent. She articulates the paradox of caring for a loved one in a PVS or MCS so perfectly. This book is beacon of hope and pure validation for the myriad of emotions that accompany families dealing with prolonged grief. I will be using this for my course.

[Diana · Rating 5 out of 5]

I am undone. This book stripped me and left me naked dressed only in raw emotion. I cannot fathom losing a child in any form or fashion.
I came very close to changing my mind about reading this real, genuine and heart wrenching story of Miles, yet each time I was ready to stop-just stop reading this,I was physically pulled back to continue, each page causing me to stop. Then start. Until it was done. My heart hurts, my breathing shallow. Lu Spinney, thank you. You’ve made me cherish my own son in ways that can’t be expressed.

[Patricia Ibarra · Rating 4 out of 5]

This is the real story of Lu Spinney and her son Miles, who had a snowboarding accident and fell into a coma. her husband and three children fought for 5 years with the hope of his recovery. The author of this book offers us evident perspectives of what it is to suffer the loss of somebody whose body is still beating. Miles is almost in a minimally conscious state but can communicate some of his feelings with his mother. He lets her know that he would rather die and asks for her help. However, with this condition, it is not legal to help somebody die.

[Vicki Fritz · Rating 5 out of 5]

Beautiful, yet wrenching

A mother's love and battle for her son...from the early days after he suffered a devastating injury, and on through the years as hope becomes determination to help her son achieve peace. The story is so poignant, the writing so lyrical, that Miles becomes every mother's son. I will not forget this amazing young man and his remarkable family as they take a journey no family should ever have to endure.

[Genevieve · Rating 5 out of 5]

I received this book for free from the Goodreads site. A must read for old and young alike. In an instant your entire life can change. This book was so heartwrenching. To read of a mother's worse nightmare of helplessly watching your child slip away. Adding more tragedy as you read of her husband battling and losing to cancer. This book has taught me to take nothing for granted and to love the people in your life today because tomorrow is never promised.

[Emily · Rating 5 out of 5]

A gut-wrenching, honest memoir of a beloved son's horrific snowboarding accident written by his mother. I learned so much about TBI (Traumatic Brain Injury) and states of consciousness, and I can't begin to imagine the pain Miles and his family members endured. On top of dealing with Miles' condition, his mother Lu has to deal with another loved one's battle with terminal cancer. Not an easy read but an absolutely engrossing tale of despair, hope, and love.

[Kay · Rating 3 out of 5]

I read a book about being “locked in” called “Ghost Boy” by Martin Pistorius. That book was a 5 star read for me. Filled with hope, inspiration, disgust and heartbreak I couldn’t put it down. This book was quite different. I listened to the audiobook but found the experience to be awkward. It was quite sad and tragic but I didn’t really enjoy the “reading experience”. I’m grateful he was finally able to rest in peace despite the medical world and all their egos and frustrations.

[Karen & Gerard · Rating 5 out of 5]

This book is written by his mother who details what she and her family went through to see that Miles got the best care he could. What a gut-wrenching story this is! I give so much credit to Lu for writing this to share her nightmare with others. (Gerard's review)

[Susan Svorai · Rating 5 out of 5]

Bravely written

Such a well written book on the family tragedy of coping with the loss of an intelligent amazing young man to traumatic brain injury, resulting in minimal level of consciousness. An important read.

[Dee Rose · Rating 5 out of 5]

*Audiobook. A beautiful memoir of a mother’s love and determination to give her son a dignified life after his traumatic brain injury that leaves him with minimal awareness and a life in a semi vegetative state. This was so sad and moving.

[Steph Liston · Rating 3 out of 5]

The saddest memoir I've ever read!

[Pamela Saenger · Rating 5 out of 5]

I hope writing this gave some form of catharsis to the author, whose beautiful prose honors the memory of her son.

[Carla · Rating 3 out of 5]

*3.5

[Sharon · Rating 5 out of 5]

I just finished reading this book and cannot recommend it enough. I will be thinking about it for a long time to come.

[Patricia · Rating 5 out of 5]

This book had me sobbing while driving (audiobook). Though difficult to read, especially for a mother with children near the age of Miles, this is a beautifully written memoir. Very sad. Worth it.