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Waking Mathilda: A Memoir of Childhood Narcolepsy
A native of England, Claire Crisp had it all—a strong marriage, three healthy children, and her own home in Bristol. Then came the H1N1 flu pandemic of 2009. It took only vaccine—one seemingly innocuous vaccine to Mathilda, the baby of the family—to change their lives forever. Diagnosed at age three as the world's youngest child with narcolepsy, the joyful and energetic Mathilda rapidly dissolved into someone unrecognizable.
In this compelling narrative, Claire Crisp chronicles the fight for Mathilda's treatment. Leaving their family and country in England, the Crisps begin a new journey—one of faith, of loss, and of love as immigrants to the western shores of the United States.
In this compelling narrative, Claire Crisp chronicles the fight for Mathilda's treatment. Leaving their family and country in England, the Crisps begin a new journey—one of faith, of loss, and of love as immigrants to the western shores of the United States.
304 pages, Kindle Edition
Published February 16, 2017
84 people are currently reading
179 people want to read
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Displaying 1 - 26 of 26 reviews
May 8, 2017
Wow.
Such a powerful story. I loved it. For all the books out there to read, an involving narrative that's beautifully written is hard to come by. This book hits all the marks with breathtaking ease. It's fascinating too, considering this author apparently has no prior books to her name. Some stories are just so big they have to be told and end up making authors out of ordinary people. Occasionally the storyteller finds a natural gift for serious writing. You see that with this book, with the elegance of its prose, the grace of its voice. By the end you're left moved by the account and longing for more. I hope to see more from Lady Crisp down the road.
Such a powerful story. I loved it. For all the books out there to read, an involving narrative that's beautifully written is hard to come by. This book hits all the marks with breathtaking ease. It's fascinating too, considering this author apparently has no prior books to her name. Some stories are just so big they have to be told and end up making authors out of ordinary people. Occasionally the storyteller finds a natural gift for serious writing. You see that with this book, with the elegance of its prose, the grace of its voice. By the end you're left moved by the account and longing for more. I hope to see more from Lady Crisp down the road.
July 23, 2019
I have a lot in common with Claire Crisp: I live in the UK, I homeschool my children, my husband is an academic, I share her faith. Perhaps this is why I could not put her edu-memoir down once I picked it up. I kept stealing a few moments upstairs, away from the kids, gulping a few pages at a time to see what was going to happen next. Claire is masterful at recounting her family’s alarming tumble down the rabbit hole of what they would eventually learn was childhood narcolepsy. No parent wants the distinction of a child’s superlative diagnosis. No parent wants to have the make the adjustments (small word) as their dreams, education decisions, career choices and even their country of residence are plucked from their grasp. As any good book does, "Waking Mathilda" opens wide a new door of empathy and knowledge. By the end of the memoir you are exhausted for them, grateful for those light-posts of doctors that helped them along the way and fully awake to the challenges facing this small population. “Waking Mathilda” is a triumph of a telling, a fierce, raspy throated anthem from a mother about her mighty daughter—you root for them along the way and deep down, if it were your child, you know you’d do the same.
August 5, 2019
This memoir was a great book to break my unplanned reading hiatus. A very touching story about a family dealing with a tragic disorder that essentially steals their child from them. Their struggle with the healthcare system in England was incredibly frustrating. It made me want to look further into some of their challenges to find out if those are the norm as the author describes.
September 15, 2020
Such powerful story from a resilient family.
August 15, 2023
Tru reflection os Narcolepsy
As a person who is all too familiar with this illness, I can say that this author is spot on in her description of symptoms, difficulty in getting diagnosis and difficulty in obtaining treatment. In my youth I knew of Narcolepsy as most of us did, one caught it as a result of receiving a bite from a Tsetse fly, now known as sleeping sickness. In midlife I learned so much more first hand. There are a few significant issues not addressed herein for the patient, understandably due to her youth. Many of us have the genetic marker and live long lives with no indication, other have onset with no clue as to why. Along with the issues addressed many of us struggle with anxiety, depression and PTSD. We are constantly fighting weight issues as our metabolism is slower and we must address employment (whether we can or cannot work, driving, yes or no. And maybe most significantly with later onset are the realizations of the things we can no longer do, those that were so common to us (swimming, going places alone or living alone, recalling memories and being treated with love ). If you have believe that you have narcolepsy, reinforce your spine and knowledge because you are in for a fight for diagnosis and treatment. Ensure that those around you are committed to a long and difficult journey. Build your support team and do all within you to be an emotionally healthy person.
As a person who is all too familiar with this illness, I can say that this author is spot on in her description of symptoms, difficulty in getting diagnosis and difficulty in obtaining treatment. In my youth I knew of Narcolepsy as most of us did, one caught it as a result of receiving a bite from a Tsetse fly, now known as sleeping sickness. In midlife I learned so much more first hand. There are a few significant issues not addressed herein for the patient, understandably due to her youth. Many of us have the genetic marker and live long lives with no indication, other have onset with no clue as to why. Along with the issues addressed many of us struggle with anxiety, depression and PTSD. We are constantly fighting weight issues as our metabolism is slower and we must address employment (whether we can or cannot work, driving, yes or no. And maybe most significantly with later onset are the realizations of the things we can no longer do, those that were so common to us (swimming, going places alone or living alone, recalling memories and being treated with love ). If you have believe that you have narcolepsy, reinforce your spine and knowledge because you are in for a fight for diagnosis and treatment. Ensure that those around you are committed to a long and difficult journey. Build your support team and do all within you to be an emotionally healthy person.
September 3, 2019
The reader knows the basics of this book from the very beginning - three year old little English girl gets narcolepsy after receiving the flu shot in anticipation of an H1N1 epidemic. The reader might think that with the mystery solved at the beginning, what more is there to learn? I can guarantee that there is plenty more to the story.
Claire Crisp details in her rich narrative a portrait of a very close knit family, probably deemed perfect in outsiders' eyes. There had been some lean times, but their future was bright as her husband pursued his academic career and Claire stayed home with the three kids and home schooled. Then the youngest, Mathilda received the flu shot and everything changed.
What follows accurately illustrates how a child's illness can have a ripple effect on the entire family. Claire and Oliver fight tirelessly (and in a state of complete exhaustion due to Mathilda's night struggles) for a diagnosis, and later, for access to life altering medication. I had always held the National Health Service in high regard in England, lamenting the fact that the US consistently refuses to even consider such a system. This was an eye opener regarding the limitations/flaws of the NHS, even in the face of very determined parents.
Claire Crisp details in her rich narrative a portrait of a very close knit family, probably deemed perfect in outsiders' eyes. There had been some lean times, but their future was bright as her husband pursued his academic career and Claire stayed home with the three kids and home schooled. Then the youngest, Mathilda received the flu shot and everything changed.
What follows accurately illustrates how a child's illness can have a ripple effect on the entire family. Claire and Oliver fight tirelessly (and in a state of complete exhaustion due to Mathilda's night struggles) for a diagnosis, and later, for access to life altering medication. I had always held the National Health Service in high regard in England, lamenting the fact that the US consistently refuses to even consider such a system. This was an eye opener regarding the limitations/flaws of the NHS, even in the face of very determined parents.
July 11, 2017
An honest and insightful tale of a family facing trials together. You won't regret reading this book.
January 20, 2020
Brilliantly written!!
What an excellent book! With deep feeling and clarity, Crisp describes the challenges of having a sick child and fighting for care the child needs to survive. The impact on her family, her marriage, her emotional stability, and her faith is both penetrating and sobering, yet somehow expressed without lasting bitterness as one might expect. As well, there were no great revelations, no profound discoveries of God in suffering; just honest inner turmoil and confusion, coupled with the desire to hold on no matter what; a mother's struggle to cope and hope against seemingly impossible odds, while keeping her family together. Though a Christian, I understand that faith can be trying, and life immensely hurtful and frustrating. In such times, Bible texts can sound like empty platitudes. How do parents believe when watching their child in pain, knowing God can relieve that pain yet chooses not to? Who smiles with confidence and peace in moments like this? It's hard. It's heart-breaking. It's angering beyond words. One feels this in Crisp's telling, the terrible grief she went through. And yet, without proselytizing or glossing over her crucible, she shares as one who has survived, learned, and grown emotionally and spiritually. Together with her supportive husband and older children, she persevered by believing still and doing when there was every reason to doubt. That is faith in the truest and most practical sense--not tranquil bliss but prayerful warfare, to keep fighting and never giving up. Ever. For God promises no one a life of ease, but the strength to do what one must and endure. And it is in the hour of endurance that He seems, to us, the farthest away, and most silent. Crisp, you endured, your family endured, and the world is better for it. Thank you for your courage, and for shedding light on the issue of narcolepsy, a disorder which, before now, I knew nothing about. I pray your story helps to inform the medical world and bring courage and hope to other families. Rest assured that in all those respects, you are an inspiration to me.
What an excellent book! With deep feeling and clarity, Crisp describes the challenges of having a sick child and fighting for care the child needs to survive. The impact on her family, her marriage, her emotional stability, and her faith is both penetrating and sobering, yet somehow expressed without lasting bitterness as one might expect. As well, there were no great revelations, no profound discoveries of God in suffering; just honest inner turmoil and confusion, coupled with the desire to hold on no matter what; a mother's struggle to cope and hope against seemingly impossible odds, while keeping her family together. Though a Christian, I understand that faith can be trying, and life immensely hurtful and frustrating. In such times, Bible texts can sound like empty platitudes. How do parents believe when watching their child in pain, knowing God can relieve that pain yet chooses not to? Who smiles with confidence and peace in moments like this? It's hard. It's heart-breaking. It's angering beyond words. One feels this in Crisp's telling, the terrible grief she went through. And yet, without proselytizing or glossing over her crucible, she shares as one who has survived, learned, and grown emotionally and spiritually. Together with her supportive husband and older children, she persevered by believing still and doing when there was every reason to doubt. That is faith in the truest and most practical sense--not tranquil bliss but prayerful warfare, to keep fighting and never giving up. Ever. For God promises no one a life of ease, but the strength to do what one must and endure. And it is in the hour of endurance that He seems, to us, the farthest away, and most silent. Crisp, you endured, your family endured, and the world is better for it. Thank you for your courage, and for shedding light on the issue of narcolepsy, a disorder which, before now, I knew nothing about. I pray your story helps to inform the medical world and bring courage and hope to other families. Rest assured that in all those respects, you are an inspiration to me.
April 18, 2020
Well gosh. It’s a wonderfully written book, and heartwrenching and triumphant (I’m glad it was triumphant in the end, I don’t think I could have managed the opposite). It was a hard read, but only because that period of newborn fear and the anxiety of diagnosis and in and out of hospital with no change resonated with our story (we live the special needs life, but not with narcolepsy).
It bothers me that the NHS was so unwilling to value Mathilda’s quality of life. And tbh, that £12k a year restriction is bs. If it had gone on, it’s likely that they would have qualified for continuing care (on going night support). Even if they only qualified for 3 nights a week, 3 ten hour shifts a week comes out at over £15k a year on their local authority, less than Xyrem. Dr Jensen was wrong to scaremonger/guilt Claire. Quality of life is not about budgets. You don’t tell a parent that if your child gets care other children can’t.
Also, it frustrates me that we trust blindly a system that’s wildly underfunded. We’re not empowered to ask the questions we need to, and unless you’ve been in the situation where mistakes have been made, you don’t know you need to. Questions like what are the risks of saying no, what are the alternatives. There’s also that awful power hierarchy between dr/parent that I dislike, where if you protest you’re made to feel like your thoughts/knowledge is less important than your drs (which is not always the case, and hasn’t been in our experience).
I wish I hadn’t read it if I’m honest, not because of the book which was great, but because it hits too close to home. The special needs life is hard and awful, particularly when it’s avoidable.
If you don’t live the special needs life, I’d recommend.
It bothers me that the NHS was so unwilling to value Mathilda’s quality of life. And tbh, that £12k a year restriction is bs. If it had gone on, it’s likely that they would have qualified for continuing care (on going night support). Even if they only qualified for 3 nights a week, 3 ten hour shifts a week comes out at over £15k a year on their local authority, less than Xyrem. Dr Jensen was wrong to scaremonger/guilt Claire. Quality of life is not about budgets. You don’t tell a parent that if your child gets care other children can’t.
Also, it frustrates me that we trust blindly a system that’s wildly underfunded. We’re not empowered to ask the questions we need to, and unless you’ve been in the situation where mistakes have been made, you don’t know you need to. Questions like what are the risks of saying no, what are the alternatives. There’s also that awful power hierarchy between dr/parent that I dislike, where if you protest you’re made to feel like your thoughts/knowledge is less important than your drs (which is not always the case, and hasn’t been in our experience).
I wish I hadn’t read it if I’m honest, not because of the book which was great, but because it hits too close to home. The special needs life is hard and awful, particularly when it’s avoidable.
If you don’t live the special needs life, I’d recommend.
September 30, 2022
An Extraordinary Puzzle Piece
The words on these pages hit me in some of my most vulnerable and tender places. I was diagnosed with type 1 Narcolepsy in 2018, with over 12 years of misdiagnosis. This book brought me so much comfort in knowing I’m not alone. It allowed me to reflect back on moments as a child where I would experience some of the very same things as Mathilda, as well as the trauma that it’s left me with.
I can’t help but question if a childhood dog bite and series of rabies vaccines could’ve been the culprit to my diagnosis as well?
I have been so misunderstood, misdiagnosed, and have felt “tired” of missing out on life. I was a teacher for the past 10 years, and with that, felt major adversity and isolation at times. I’m currently in a season of reflection, healing, and rest as I take time away from the classroom.
I’ve been facing some new symptoms, ups and downs with medications and treatment, but after reading this, I feel even more inspired to advocate and shed light on Narcolepsy awareness.
Claire’s eloquent words, knowledge, and compassion will provide encouragement and perspective to those battling or know someone battling with invisible chronic illnesses.
You won’t want to put this book down!
The words on these pages hit me in some of my most vulnerable and tender places. I was diagnosed with type 1 Narcolepsy in 2018, with over 12 years of misdiagnosis. This book brought me so much comfort in knowing I’m not alone. It allowed me to reflect back on moments as a child where I would experience some of the very same things as Mathilda, as well as the trauma that it’s left me with.
I can’t help but question if a childhood dog bite and series of rabies vaccines could’ve been the culprit to my diagnosis as well?
I have been so misunderstood, misdiagnosed, and have felt “tired” of missing out on life. I was a teacher for the past 10 years, and with that, felt major adversity and isolation at times. I’m currently in a season of reflection, healing, and rest as I take time away from the classroom.
I’ve been facing some new symptoms, ups and downs with medications and treatment, but after reading this, I feel even more inspired to advocate and shed light on Narcolepsy awareness.
Claire’s eloquent words, knowledge, and compassion will provide encouragement and perspective to those battling or know someone battling with invisible chronic illnesses.
You won’t want to put this book down!
August 18, 2019
This really is one of those stories that continues to sit with you long after you finish reading it.
I am not usually drawn to memoirs, but I devoured this book in 2 days. The writing is immersive, making you truly feel a part of the family's journey from new onset chronic illness to fighting for diagnosis, proper treatment, and regaining whatever normalcy can be found after such a life altering event. Claire Crisp's story is raw and unbelievably real. I learned so much about Narcolepsy, stigmas aside, and the true toll it can take on a sufferer and those charged to care for a narcoleptic. What a family. What incredible strength and inspirational determination. This really is one of those stories that continues to sit with you long after you finish reading it, and truly I am feeling much more thankful for my health and relative normalcy of my family's life circumstances. Thank you, Claire, for sharing your family's story with us.
I am not usually drawn to memoirs, but I devoured this book in 2 days. The writing is immersive, making you truly feel a part of the family's journey from new onset chronic illness to fighting for diagnosis, proper treatment, and regaining whatever normalcy can be found after such a life altering event. Claire Crisp's story is raw and unbelievably real. I learned so much about Narcolepsy, stigmas aside, and the true toll it can take on a sufferer and those charged to care for a narcoleptic. What a family. What incredible strength and inspirational determination. This really is one of those stories that continues to sit with you long after you finish reading it, and truly I am feeling much more thankful for my health and relative normalcy of my family's life circumstances. Thank you, Claire, for sharing your family's story with us.
August 8, 2021
Emotional journey
The emotional journey that a mother takes to find out what is going on with her child takes you through this book.
The descriptions of Narcolepsy symptoms are spot on.
While every patient has symptoms unique in severity to them and not every patient has all the symptoms, they are represented here accurately.
The typical frustration in finding out what is going on, gaslighting by medical professionals and total frustration with the health care field is all very true. No matter if you are in the USA, UK or another country. Even going to a sleep specialist does not ensure that your symptoms will be recognized. Far too many sleep Drs only ever see apnea patients.
If you have any of the symptoms mentioned in the book and have gotten no help from your Dr. keep pushing. See another Dr and another. There are options other then being pushed off on mental health care.
The emotional journey that a mother takes to find out what is going on with her child takes you through this book.
The descriptions of Narcolepsy symptoms are spot on.
While every patient has symptoms unique in severity to them and not every patient has all the symptoms, they are represented here accurately.
The typical frustration in finding out what is going on, gaslighting by medical professionals and total frustration with the health care field is all very true. No matter if you are in the USA, UK or another country. Even going to a sleep specialist does not ensure that your symptoms will be recognized. Far too many sleep Drs only ever see apnea patients.
If you have any of the symptoms mentioned in the book and have gotten no help from your Dr. keep pushing. See another Dr and another. There are options other then being pushed off on mental health care.
January 30, 2020
This book is a really honest journey of a mother and child who have endured great challenges to get the right treatment for a chronic illness like narcolepsy. Any one who has walked through the doors of a hospital, waited for the doctors prescription each time and has closely nursed a family member will very well relate to how a family as a whole gets affected with their daily activities due to an illness which has affected their loved one. The journey is not just of physical boundaries, but of the huge emotional toll it takes on them.
Its completely worth reading and i enjoyed this book. It doesnt seek sympathy, but shows the journey.
Its completely worth reading and i enjoyed this book. It doesnt seek sympathy, but shows the journey.
May 8, 2017
This is a book about hope, faith, love and family and what happens when these collide with illness, arrogance and pride. This is an emotionally tough book to read and should come with a free box of tissues (you've been warned!) but it's a story of real people and as such the reader is generously invited into the family's darkest days where raw emotions are recounted in ways no work of fiction can attempt. This book could help make great advancements in improving patient/parent-doctor relationships and should be compulsory reading for all serving and trainee doctors.
September 22, 2021
All is well
In November of our youngest daughter's 8th grade year on school, she woke up an entirely different person. The child who previously set school reading records now could not read three pages much less a chapter without suddenly falling asleep. She would sleep for HOURS and be so disoriented and angry when she was awake. I can relate to the mother writing this story. I needed the reminder all is well. This story is a reminder just because someone looks okay on the outside doesn't mean everything is okay.
In November of our youngest daughter's 8th grade year on school, she woke up an entirely different person. The child who previously set school reading records now could not read three pages much less a chapter without suddenly falling asleep. She would sleep for HOURS and be so disoriented and angry when she was awake. I can relate to the mother writing this story. I needed the reminder all is well. This story is a reminder just because someone looks okay on the outside doesn't mean everything is okay.
February 14, 2018
Beautiful honest book about raising a child with narcolepsy!
I have a great niece that lives with narcolepsy and I wanted to learn more about it. This is a wonderful book that deals with the struggles one lives with daily and the affects on all family members. It has given me a better understanding of narcolepsy. If you love someone who suffers with narcolepsy this is a must read!!
I have a great niece that lives with narcolepsy and I wanted to learn more about it. This is a wonderful book that deals with the struggles one lives with daily and the affects on all family members. It has given me a better understanding of narcolepsy. If you love someone who suffers with narcolepsy this is a must read!!
November 20, 2019
Maravilloso libro, escrito con el balance
perfecto de emoción y seriedad que el tema merece. Con la cantidad justa de información sobre narcolepsia que te permite entender y aprender bastante de la enfermedad, sin dejar atrás el lado humano.
Claire Crisp tiene una habilidad nata para escribir y ha ganado todo mi admiración y respeto gracias a este libro. Lo recomiendo enormemente, no se arrepentirán de conocer esta historia.
perfecto de emoción y seriedad que el tema merece. Con la cantidad justa de información sobre narcolepsia que te permite entender y aprender bastante de la enfermedad, sin dejar atrás el lado humano.
Claire Crisp tiene una habilidad nata para escribir y ha ganado todo mi admiración y respeto gracias a este libro. Lo recomiendo enormemente, no se arrepentirán de conocer esta historia.
January 17, 2020
Awesome story
This touching memoir of despair, courage, and a family’s love that holds them together through trials should be read by everyone. The emotional and technical aspects of the effects of a narcolepsy diagnosis on a family is almost beyond comprehension, but this beautiful writing conveys it well.
This touching memoir of despair, courage, and a family’s love that holds them together through trials should be read by everyone. The emotional and technical aspects of the effects of a narcolepsy diagnosis on a family is almost beyond comprehension, but this beautiful writing conveys it well.
March 21, 2021
Where to start! As the Mother of an adult son with narcolepsy with cataplexy, I am so grateful to Claire Crisp for sharing the story of Matilda’s descent into this awful disease and its effect on the whole family. The factual timeline, medical information and challenges of dealing with the medical system were woven together with vivid descriptions of the frustration, exhaustion, despair, fear, prayer and, finally, hope during the journey seeking a correct diagnosis and meaningful treatment for dear Matilda.
A must read for anyone with a loved one with narcolepsy.
A must read for anyone with a loved one with narcolepsy.
October 30, 2018
Good book
This book tells of the struggles of parents who socialized medicine wouldn’t help their sick child. Thank you for telling your story.
This book tells of the struggles of parents who socialized medicine wouldn’t help their sick child. Thank you for telling your story.
October 29, 2019
Couldn’t put this down!!
What an incredible story. So glad the USA doesn’ t have socilaized medicine.
Some of these vaccine manufacturers should go to jail!
What an incredible story. So glad the USA doesn’ t have socilaized medicine.
Some of these vaccine manufacturers should go to jail!
Read
November 12, 2019Narcolepsy is even worse than the 3EB song says it is.
December 29, 2019
Wonderfully written. Not my usual read. Very sobering and emotional. What a strong, brave family.
June 17, 2020
Love this book
As someone with narcolepsy, I appreciate this mother's willingness to tell her & her daughter's story. I thoroughly enjoyed reading this book.
As someone with narcolepsy, I appreciate this mother's willingness to tell her & her daughter's story. I thoroughly enjoyed reading this book.
January 20, 2021
Heartwrenching true story!
December 4, 2020
Important but heartbreaking story, well told from an insightful mother’s point of view
Displaying 1 - 26 of 26 reviews