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The Inward Empire: Mapping the Wilds of Mortality and Fatherhood
In the vein of The Noonday Demon and When Breath Becomes Air , a father's "remarkable and revelatory" account of navigating his own neurological decline while watching in wonder as his young daughter's brain activity blossoms, a stunning examination of neurology, loss, and the meaning of life. (The Sunday Times)
Soon after his daughter Leontine is born, 36-year old Christian Donlan's world shifted an inch to the left. He started to miss door handles and light switches when reaching for them. He was suddenly unable to fasten the tiny buttons on his new daughter's clothes. These experiences were the early symptoms of multiple sclerosis, an incurable and degenerative neurological illness.
As Leontine starts to investigate the world around her, Donlan too finds himself in a new environment, a "spook country" he calls the "Inward Empire," where reality starts to break down in bizarre, frightening, sometimes beautiful ways. Rather than turning away from this landscape, Donlan summons courage and curiosity and sets out to explore, a tourist in his own body. The result is this exquisitely observed, heartbreaking, and uplifting investigation into the history of neurology, the joys and anxieties of fatherhood, and what remains after everything we take for granted - including the functions that make us feel like ourselves - has been stripped away.
Like Andrew Solomon, Paul Kalathini, and William Styron, Donlan brings meaning, grace, playfulness, and dignity to an experience that terrifies and confounds us all.
Soon after his daughter Leontine is born, 36-year old Christian Donlan's world shifted an inch to the left. He started to miss door handles and light switches when reaching for them. He was suddenly unable to fasten the tiny buttons on his new daughter's clothes. These experiences were the early symptoms of multiple sclerosis, an incurable and degenerative neurological illness.
As Leontine starts to investigate the world around her, Donlan too finds himself in a new environment, a "spook country" he calls the "Inward Empire," where reality starts to break down in bizarre, frightening, sometimes beautiful ways. Rather than turning away from this landscape, Donlan summons courage and curiosity and sets out to explore, a tourist in his own body. The result is this exquisitely observed, heartbreaking, and uplifting investigation into the history of neurology, the joys and anxieties of fatherhood, and what remains after everything we take for granted - including the functions that make us feel like ourselves - has been stripped away.
Like Andrew Solomon, Paul Kalathini, and William Styron, Donlan brings meaning, grace, playfulness, and dignity to an experience that terrifies and confounds us all.
336 pages, Hardcover
First published January 1, 2018
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496 people want to read
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Displaying 1 - 30 of 44 reviews
August 15, 2020
Dull. The book is misnamed. It should be called, "The Unmapped Mind: A Memoir of my Daughter from the First Scan through her Babyhood and Toddlerhood, and also Multiple Sclerosis."
As Tolstoy said, "All happy families are alike; each unhappy family is unhappy in its own way." The author hasd no new insights to add to his daughter's childhood, which he relates in detail from the moment of the first scan when when was a "neural tube waving at one end" through birth, first looks, first words, feeding herself, first steps etc. I was waiting for the author to write about neurology and the multiple sclerosis.
And he did, in between his daughter, his wife, the house and all the problems that needed fixing and his friends. And sometimes even his presumed friends as he told us, in detail, how close he was to his neurologist, how they were best friends - but only in his own head.
The author is in love with his own ability with words. He undoubtedly has that talent but he does ramble. He never loses an opportunity for an extended metaphor or simile (especially if it involves his daughter), for a description of anything or anyone or a memory. As seems de rigeur with non-fiction books all possible history of the subject is included even when it is obviously mythological!
I was thinking that a good editor could have cut the wordy prose down to fit the title, but there wouldn't have been enough for a book. However, what was left, the symptoms of multiple sclerosis, the effect on his life, the diagnosis and treatment would have been interesting.
I had a very good friend, a flatmate with multiple sclerosis and my brother's best friend died of it in his 30s his muscles didn't work well, he was in a wheelchair and the disease affected his lungs so I was very interested to read this book. But I don't feel I've gained anything, learned anything new. I'm just glad it's done with, it was just dull.
2.5 stars rounded up to three because overwriting or not, it was well-written.
As Tolstoy said, "All happy families are alike; each unhappy family is unhappy in its own way." The author hasd no new insights to add to his daughter's childhood, which he relates in detail from the moment of the first scan when when was a "neural tube waving at one end" through birth, first looks, first words, feeding herself, first steps etc. I was waiting for the author to write about neurology and the multiple sclerosis.
And he did, in between his daughter, his wife, the house and all the problems that needed fixing and his friends. And sometimes even his presumed friends as he told us, in detail, how close he was to his neurologist, how they were best friends - but only in his own head.
The author is in love with his own ability with words. He undoubtedly has that talent but he does ramble. He never loses an opportunity for an extended metaphor or simile (especially if it involves his daughter), for a description of anything or anyone or a memory. As seems de rigeur with non-fiction books all possible history of the subject is included even when it is obviously mythological!
I was thinking that a good editor could have cut the wordy prose down to fit the title, but there wouldn't have been enough for a book. However, what was left, the symptoms of multiple sclerosis, the effect on his life, the diagnosis and treatment would have been interesting.
I had a very good friend, a flatmate with multiple sclerosis and my brother's best friend died of it in his 30s his muscles didn't work well, he was in a wheelchair and the disease affected his lungs so I was very interested to read this book. But I don't feel I've gained anything, learned anything new. I'm just glad it's done with, it was just dull.
2.5 stars rounded up to three because overwriting or not, it was well-written.
August 26, 2018
Rating: 2.5
“Weirdly, of all the diseases you could get, I would have picked you for this,” he [my friend] said at last. He then immediately considered what he’d just said. “Well, I wouldn’t pick you for this, but I mean, it fits.”
I laughed. “Really?”
“You’ve always loved all that neurology stuff,” he said. “There was that thing you told me about memory a while back.”
Donlan’s book is a hybrid memoir/nonfiction piece about multiple sclerosis, a disease characterized by the body’s own immune system attacking myelin, the fatty covering of nerves that both protects them and ensures the rapid transmission of impulses along them. Chapters in The Unmapped Mind alternate between the personal and subjective (in plain font) and the more objective (in bold): The odds give an account of the author’s own experience, while the evens provide some history and basic facts about the condition. Donlan’s first strange symptoms were related to his hands. He reached for and regularly missed door handles, but didn’t think too much of this. He and his wife were expecting their first child and had purchased a home; they had other things to occupy their minds. When his daughter was born and her neurological and cognitive repertoire expanded—or, as he aptly puts it, “came online”—Donlan’s were going offline in stages. “It is hard to spot the things that happen when your brain starts to go wrong” he observes, “because your brain is the last thing that is going to tell you about it.” Ultimately, the classic MS symptom, L’Hermitte’s Sign—an uncomfortable electrical sensation that runs down the back and into the limbs when the head is flexed forward—proved impossible to ignore. He saw his GP, who subsequently referred him to a neurologist.
Donlan generally writes well and fluently about the many changes— physical, psychological, cognitive, and social—he has experienced with MS. The reader learns of diplopia (double vision); trigeminal neuralgia (a condition that causes extreme cheek and jaw pain in sufferers, though Donlan’s discomfort does not reach that intensity); generalized cognitive dulling; the resetting of the author’s default from anxious to unconcerned, from meltdown-prone to mellow-minded; his inability to discriminate been classes of objects—when sorting the laundry or recycling, for example; strange periods of high, almost manic energy; possible hallucinations (though hallucinations are not commonly documented in those with MS), and disinhibition—times when the internal editor of speech and actions is no longer monitoring and the patient speaks too fast, too loud, and in too much detail. Donlan later recognizes that at times he may have wrongly attributed subjective experiences to MS. So much of the disease, at least in its early stages, cannot be seen by others.
The Unmapped Mind occasionally suffers from distracting, fanciful, or overblown writing. Donlan’s wife, for example, “shuffle[s] . . . in the occasional crooked smile and hint of that gorgeously wonky incisor . . . .” A railway coffee shop in Cairo he once sat in apparently offered “quietly disappointing cakes”. Donlan gives MS the ability to “reach . . . forward in silence and place . . . a shushing finger against the base of . . . [his] neck.” His description of the experience of double vision turns into a baroque ode to an IKEA wingback armchair: “a masterwork of tasteful retro design, blessed with fine lumbar support and capable of transforming even the least reflective of sitters into a Victorian consulting detective, all crossed legs and templed fingers.” Is this really necessary? At times (particularly when he gives a very lengthy account of being in hospital for five days to receive drug infusions), I found myself wishing he would cut the embellishment and just get to the point.
Along with the overwriting, Donlan’s fairly persistent self-dramatizing often rubbed me the wrong way. Informing his friends and family of his condition, for example, becomes quite a production. His wife wisely counsels him to wait until there is a firm diagnosis before he shares any details with others, but he cannot. He seems bizarrely eager to achieve special status as a patient with an incurable illness. For the performance in which he shares the news with his friend Simon, he gives himself a rating of 6/10; he judges his later notification of his friend Brian by text “classy”. “I knew exactly what I wanted to do in the days and perhaps weeks following my diagnosis,” he writes. “I would go to bed for about a fortnight, luxuriating in the warmth of some self-prescribed compassionate leave from work. Then I would flop around the house in a dressing gown, bony arm flung across my face, and maybe I would quote T.S. Eliot out loud until someone noticed how resolute I was being.” Donlan acknowledges his “self-involvement” and a certain theatricality in his personality before his diagnosis. He mentions that on an early date with his wife, he “was desperate to appear unusual.” After the diagnosis, he admits to a “grotesque smugness” and “egomania”. Maybe as the middle child of five, he only ever received attention when ill? Whatever the case, I found his response unusual, and apparently his wife did, as well. She confronted him on his endless reading of neurological texts to distract and distance himself from the hard reality of the diagnosis. I don’t know a lot of people with MS, but a high school classmate once surprised me by revealing that his mother had it and life at home was very hard. As an adult, I’ve seen students of mine lose parents in their thirties and forties to the disease, and I have a cousin who suffers from it—first she used a cane, later a walker, then a wheelchair, and now she is bedridden. Yes, there are several types of MS and its course can be highly variable, and, yes, Donlan may have a bad (i.e., highly active) case of the best type (relapsing and remitting) of MS, but, still, the disease is not a joke. Eventually, he comes to realize this when an MRI reveals the disease is progressing, even though he was sure the medication was working. He subsequently chooses to be treated with Lemtrada, which can have significant side effects, including kidney damage.
The Unmapped Mind is a personal, reflective, and rather rambling read. Given some of the things I’ve mentioned, I am not sure how representative Donlan’s experience is of those with MS. The disease is highly variable, and this is one person’s take on it, presented with some solid factual information and a good notes section.
“Weirdly, of all the diseases you could get, I would have picked you for this,” he [my friend] said at last. He then immediately considered what he’d just said. “Well, I wouldn’t pick you for this, but I mean, it fits.”
I laughed. “Really?”
“You’ve always loved all that neurology stuff,” he said. “There was that thing you told me about memory a while back.”
Donlan’s book is a hybrid memoir/nonfiction piece about multiple sclerosis, a disease characterized by the body’s own immune system attacking myelin, the fatty covering of nerves that both protects them and ensures the rapid transmission of impulses along them. Chapters in The Unmapped Mind alternate between the personal and subjective (in plain font) and the more objective (in bold): The odds give an account of the author’s own experience, while the evens provide some history and basic facts about the condition. Donlan’s first strange symptoms were related to his hands. He reached for and regularly missed door handles, but didn’t think too much of this. He and his wife were expecting their first child and had purchased a home; they had other things to occupy their minds. When his daughter was born and her neurological and cognitive repertoire expanded—or, as he aptly puts it, “came online”—Donlan’s were going offline in stages. “It is hard to spot the things that happen when your brain starts to go wrong” he observes, “because your brain is the last thing that is going to tell you about it.” Ultimately, the classic MS symptom, L’Hermitte’s Sign—an uncomfortable electrical sensation that runs down the back and into the limbs when the head is flexed forward—proved impossible to ignore. He saw his GP, who subsequently referred him to a neurologist.
Donlan generally writes well and fluently about the many changes— physical, psychological, cognitive, and social—he has experienced with MS. The reader learns of diplopia (double vision); trigeminal neuralgia (a condition that causes extreme cheek and jaw pain in sufferers, though Donlan’s discomfort does not reach that intensity); generalized cognitive dulling; the resetting of the author’s default from anxious to unconcerned, from meltdown-prone to mellow-minded; his inability to discriminate been classes of objects—when sorting the laundry or recycling, for example; strange periods of high, almost manic energy; possible hallucinations (though hallucinations are not commonly documented in those with MS), and disinhibition—times when the internal editor of speech and actions is no longer monitoring and the patient speaks too fast, too loud, and in too much detail. Donlan later recognizes that at times he may have wrongly attributed subjective experiences to MS. So much of the disease, at least in its early stages, cannot be seen by others.
The Unmapped Mind occasionally suffers from distracting, fanciful, or overblown writing. Donlan’s wife, for example, “shuffle[s] . . . in the occasional crooked smile and hint of that gorgeously wonky incisor . . . .” A railway coffee shop in Cairo he once sat in apparently offered “quietly disappointing cakes”. Donlan gives MS the ability to “reach . . . forward in silence and place . . . a shushing finger against the base of . . . [his] neck.” His description of the experience of double vision turns into a baroque ode to an IKEA wingback armchair: “a masterwork of tasteful retro design, blessed with fine lumbar support and capable of transforming even the least reflective of sitters into a Victorian consulting detective, all crossed legs and templed fingers.” Is this really necessary? At times (particularly when he gives a very lengthy account of being in hospital for five days to receive drug infusions), I found myself wishing he would cut the embellishment and just get to the point.
Along with the overwriting, Donlan’s fairly persistent self-dramatizing often rubbed me the wrong way. Informing his friends and family of his condition, for example, becomes quite a production. His wife wisely counsels him to wait until there is a firm diagnosis before he shares any details with others, but he cannot. He seems bizarrely eager to achieve special status as a patient with an incurable illness. For the performance in which he shares the news with his friend Simon, he gives himself a rating of 6/10; he judges his later notification of his friend Brian by text “classy”. “I knew exactly what I wanted to do in the days and perhaps weeks following my diagnosis,” he writes. “I would go to bed for about a fortnight, luxuriating in the warmth of some self-prescribed compassionate leave from work. Then I would flop around the house in a dressing gown, bony arm flung across my face, and maybe I would quote T.S. Eliot out loud until someone noticed how resolute I was being.” Donlan acknowledges his “self-involvement” and a certain theatricality in his personality before his diagnosis. He mentions that on an early date with his wife, he “was desperate to appear unusual.” After the diagnosis, he admits to a “grotesque smugness” and “egomania”. Maybe as the middle child of five, he only ever received attention when ill? Whatever the case, I found his response unusual, and apparently his wife did, as well. She confronted him on his endless reading of neurological texts to distract and distance himself from the hard reality of the diagnosis. I don’t know a lot of people with MS, but a high school classmate once surprised me by revealing that his mother had it and life at home was very hard. As an adult, I’ve seen students of mine lose parents in their thirties and forties to the disease, and I have a cousin who suffers from it—first she used a cane, later a walker, then a wheelchair, and now she is bedridden. Yes, there are several types of MS and its course can be highly variable, and, yes, Donlan may have a bad (i.e., highly active) case of the best type (relapsing and remitting) of MS, but, still, the disease is not a joke. Eventually, he comes to realize this when an MRI reveals the disease is progressing, even though he was sure the medication was working. He subsequently chooses to be treated with Lemtrada, which can have significant side effects, including kidney damage.
The Unmapped Mind is a personal, reflective, and rather rambling read. Given some of the things I’ve mentioned, I am not sure how representative Donlan’s experience is of those with MS. The disease is highly variable, and this is one person’s take on it, presented with some solid factual information and a good notes section.
June 14, 2018
(4.5) This is some of the best medical writing from a layman’s perspective I’ve ever read. Donlan, a Brighton-area journalist who plays and writes about video games for a living, was diagnosed with relapsing-remitting multiple sclerosis in 2014. It explained the weird symptoms he’d been having: reaching out for but failing to grasp door handles, a jolt of electricity down his spine whenever he bent his head forward, and nerve pain in his face. Later came double vision and trouble with words; “I think sometimes that early MS is a sort of tasting menu of neurological disease,” Donlan wryly offers.
Throughout this book he approaches his disease with good humor and curiosity, using metaphors of maps to depict himself as an explorer into uncharted territory. Because, despite the medical advances of over a century, MS remains a mysterious illness that varies tremendously from person to person, so it’s very much an individual journey. The accounts of going in for an MRI and a round of Lemtrada chemotherapy are excellent. In short interludes, Donlan gives snippets from the history of MS and the science of neurology in general: Phineas Gage, him of the rail spike in the head; Jean-Martin Charcot’s research; and the curious links between ‘Viking genes’, Vitamin D and MS. He also weaves in his family history of growing up in California with four siblings, and his brother’s brain tumor.
What’s especially nice is how the author sets up parallels with his daughter’s early years: Leon (Leontine) took her first steps on the day he was diagnosed, and all the time that he was feeling his way into life as a neurology patient, she was becoming more and more her own little person. One of my pet peeves is when men try to pretend, on social media or wherever, that parenthood isn’t part of their ‘real life’ of IT work and marathons and puns and political debate. You can bet their wives are posting stuff about the kids all the time, but look at these men’s pages and you could easily miss the fact that they’re fathers. But Donlan is an eager and engaged father, and Leon is part of his daily life, whether he’s changing nappies, reading parenting books to educate himself, or preparing her for a bus trip out to meet a friend.
My frontrunner for next year’s Wellcome Book Prize so far.
Some favorite lines:
“It can seem at times that this brain of ours is basically a chemist, eager to whip up whatever magical cocktail will keep you alive through the next five minutes of unpredictable human experience.”
“Imagine that the clumsiest cliché is correct and the brain really is just a computer. Then imagine that you open the computer’s case one day and discover that there are termites inside who have been eating the plastic coating on all the wiring. What do you do?”
“Medical crises seem to borrow the rhythm of wartime, frantic action punctuating an endless period of waiting in which minds are left blank and useless, in which heads are ducked in readiness for the next shell that will fall.”
“I am becoming a map. My head and spine are being cross-sectioned, so I am turning into those lagoons, ox-bows and bleached chalk tracks you see on the finished scans of strangers.”
“I awoke one February morning on a strange planet. I stayed for a couple of weeks. During the days I would see one sun nudging another across the sky; when night came, I would go to sleep beneath interlocking moons. Diplopia had arrived, more commonly known as double vision”
“Remember that life is moments, that MS is a disease of the moments, and it says, in its swiping carelessness, that the moments matter.”
Throughout this book he approaches his disease with good humor and curiosity, using metaphors of maps to depict himself as an explorer into uncharted territory. Because, despite the medical advances of over a century, MS remains a mysterious illness that varies tremendously from person to person, so it’s very much an individual journey. The accounts of going in for an MRI and a round of Lemtrada chemotherapy are excellent. In short interludes, Donlan gives snippets from the history of MS and the science of neurology in general: Phineas Gage, him of the rail spike in the head; Jean-Martin Charcot’s research; and the curious links between ‘Viking genes’, Vitamin D and MS. He also weaves in his family history of growing up in California with four siblings, and his brother’s brain tumor.
What’s especially nice is how the author sets up parallels with his daughter’s early years: Leon (Leontine) took her first steps on the day he was diagnosed, and all the time that he was feeling his way into life as a neurology patient, she was becoming more and more her own little person. One of my pet peeves is when men try to pretend, on social media or wherever, that parenthood isn’t part of their ‘real life’ of IT work and marathons and puns and political debate. You can bet their wives are posting stuff about the kids all the time, but look at these men’s pages and you could easily miss the fact that they’re fathers. But Donlan is an eager and engaged father, and Leon is part of his daily life, whether he’s changing nappies, reading parenting books to educate himself, or preparing her for a bus trip out to meet a friend.
My frontrunner for next year’s Wellcome Book Prize so far.
Some favorite lines:
“It can seem at times that this brain of ours is basically a chemist, eager to whip up whatever magical cocktail will keep you alive through the next five minutes of unpredictable human experience.”
“Imagine that the clumsiest cliché is correct and the brain really is just a computer. Then imagine that you open the computer’s case one day and discover that there are termites inside who have been eating the plastic coating on all the wiring. What do you do?”
“Medical crises seem to borrow the rhythm of wartime, frantic action punctuating an endless period of waiting in which minds are left blank and useless, in which heads are ducked in readiness for the next shell that will fall.”
“I am becoming a map. My head and spine are being cross-sectioned, so I am turning into those lagoons, ox-bows and bleached chalk tracks you see on the finished scans of strangers.”
“I awoke one February morning on a strange planet. I stayed for a couple of weeks. During the days I would see one sun nudging another across the sky; when night came, I would go to sleep beneath interlocking moons. Diplopia had arrived, more commonly known as double vision”
“Remember that life is moments, that MS is a disease of the moments, and it says, in its swiping carelessness, that the moments matter.”
July 12, 2018
This is a wonderful book. If you have MS, another neurological illness, and/or children, it's a great read. Caveat to those with MS: Do not take the book as prescriptive. Because of his slavish reliance on medical professionals and his own flawed notions, the author gets a lot of information about MS and its treatment wrong. He does so with such marvelous prose and wit, though, it doesn't detract from the book's overall appeal. In a twisted way, it adds to it.
One fact I learned from the book (I already knew it conceptually it but had never labeled it as such): A major and dangerous symptom of MS is selfishness. It's not only a symptom, it's an exacerbating factor. Early on, the author tells his doctor that he doesn't want to get involved in any kind of MS group. In fact, he never wants to meet anyone else with MS. This reluctance costs him dearly in unnecessary physical and emotional trauma.
I wanted to sit down with this guy and talk, not only to try to help him with some major misconceptions about MS, but simply because he seems like a great guy to sit and talk with. Thus, the double whammy of selfishness: He misses out on important insights from others who have limped down the road he is on and he deprives the rest of us of his insights, of which he has many that would benefit others.
Note that he isn't alone in this attitude. It's almost impossible to get the newly diagnosed MS patient involved in a support group. If he thinks he's being counter-cultural, he's wrong. He's a caricature in this respect. And that's sad. It truly takes a village to deal with MS. And not just a village of medical professionals. What ends up happening in many cases, including the author's, is they end up using their immediate family as their support system, for those who are fortunate enough to have a family to rely on. That's unfair to the family. And it's less effective. Again: selfishness.
He's spot on about his view that MS is unprecedented for everyone who gets it. Each person becomes the only expert in her case. He adds: "In some crucial way, you have to be alone with this." While there is truth to that statement, it's misleading. In a more crucial way, you have to get help from (and lend help to) others.
Strangely, the author seems to recognize his mistake when toward the end of the book he says, "MS turns you inwards, I think... It is time for a change of focus." He reflects further (but not far enough, I think) on this error in the final pages of the book.
The final problem with the author's story is his willingness to do whatever his doctors tell him. Obviously, I don't know the fine details of his case, but it's hard to comprehend a doctor recommending the powerful drug Tecfidera (his unnamed but clearly understood first drug) as a first line treatment. That's almost unheard of in my experience. Then to move right to Lemtrada, a dangerous chemo drug and a huge hammer, is frightening!
But all that is speculation on my part about the way the author has chosen to follow his path. If his selfishness is his worst enemy, his curiosity might be his best friend. Followed closely by his thoroughly enjoyable writing (it doesn't hurt that he chose to quote a great short story by one of my favorite authors, Mark Helprin, in one of his anecdotes) and his adorable daughter, Leon. And lest I forget: the British health care system, which has the US "system" beat hollow.
All that said, I loved the book and highly recommend it, especially to my MS friends. You will nod your head in agreement with the author, shout epithets in disagreement, and laugh out loud along the way. You might even shed a few tears.
Great book. Christian Donlan is welcome at my support group meetings any time.
One fact I learned from the book (I already knew it conceptually it but had never labeled it as such): A major and dangerous symptom of MS is selfishness. It's not only a symptom, it's an exacerbating factor. Early on, the author tells his doctor that he doesn't want to get involved in any kind of MS group. In fact, he never wants to meet anyone else with MS. This reluctance costs him dearly in unnecessary physical and emotional trauma.
I wanted to sit down with this guy and talk, not only to try to help him with some major misconceptions about MS, but simply because he seems like a great guy to sit and talk with. Thus, the double whammy of selfishness: He misses out on important insights from others who have limped down the road he is on and he deprives the rest of us of his insights, of which he has many that would benefit others.
Note that he isn't alone in this attitude. It's almost impossible to get the newly diagnosed MS patient involved in a support group. If he thinks he's being counter-cultural, he's wrong. He's a caricature in this respect. And that's sad. It truly takes a village to deal with MS. And not just a village of medical professionals. What ends up happening in many cases, including the author's, is they end up using their immediate family as their support system, for those who are fortunate enough to have a family to rely on. That's unfair to the family. And it's less effective. Again: selfishness.
He's spot on about his view that MS is unprecedented for everyone who gets it. Each person becomes the only expert in her case. He adds: "In some crucial way, you have to be alone with this." While there is truth to that statement, it's misleading. In a more crucial way, you have to get help from (and lend help to) others.
Strangely, the author seems to recognize his mistake when toward the end of the book he says, "MS turns you inwards, I think... It is time for a change of focus." He reflects further (but not far enough, I think) on this error in the final pages of the book.
The final problem with the author's story is his willingness to do whatever his doctors tell him. Obviously, I don't know the fine details of his case, but it's hard to comprehend a doctor recommending the powerful drug Tecfidera (his unnamed but clearly understood first drug) as a first line treatment. That's almost unheard of in my experience. Then to move right to Lemtrada, a dangerous chemo drug and a huge hammer, is frightening!
But all that is speculation on my part about the way the author has chosen to follow his path. If his selfishness is his worst enemy, his curiosity might be his best friend. Followed closely by his thoroughly enjoyable writing (it doesn't hurt that he chose to quote a great short story by one of my favorite authors, Mark Helprin, in one of his anecdotes) and his adorable daughter, Leon. And lest I forget: the British health care system, which has the US "system" beat hollow.
All that said, I loved the book and highly recommend it, especially to my MS friends. You will nod your head in agreement with the author, shout epithets in disagreement, and laugh out loud along the way. You might even shed a few tears.
Great book. Christian Donlan is welcome at my support group meetings any time.
August 8, 2024
Absolutely gorgeous
September 12, 2018
One of the best books I've read recently. Donlan writes candidly about his diagnosis with MS. Much more than that, he offers the reader spiritual solace. Yes, someday, likely you and I will get ill, too. He stresses that one's illness can bring about a different order of experience than hum-drum mundane concerns. Life is changed, but not ended, as long as there is a life to be lived. Throughout the book, he observes his daughter Leon develop her own poignant awareness of mortality. A book that, like Don Quixote, bears re-reading.
April 4, 2018
The author has MS and he uses his illness to explain a little bit of neurology and a lot about the way he feels about life and his family and how he handles being sick. It was a very enlightening book for me, even if I studied MS I think I say it with different eyes and it was precious.
L'autore racconta la sua vita prima e dopo aver ricevuto la diagnosi di sclerosi multipla e utilizza la sua malattia per spiegare un po' di neurologia ma anche come ha deciso di gestirsi la malattia. È stato un libro importante per me, anche se avevo studiato la malattia non avevo mai capito a fondo quali sono le conseguenze dei suoi sintomi; è stato illuminante e molto prezioso.
THANKS NETGALLEY FOR THE PREVIEW!
L'autore racconta la sua vita prima e dopo aver ricevuto la diagnosi di sclerosi multipla e utilizza la sua malattia per spiegare un po' di neurologia ma anche come ha deciso di gestirsi la malattia. È stato un libro importante per me, anche se avevo studiato la malattia non avevo mai capito a fondo quali sono le conseguenze dei suoi sintomi; è stato illuminante e molto prezioso.
THANKS NETGALLEY FOR THE PREVIEW!
February 3, 2019
"In a hospital ward like this, you get a chance to see what remains once the hollowing has done its work. And it's the Pavlovian stuff that remains. The rituals that have become hardened, that have become the stuff of neurons themselves. To fire together is to wire together: behavior eventually becomes matter. Edward's desire to take control, to make us safe. Phil's desire to keep everyone entertained. A lifetime of programming is building up. What will be left when the conscious engine starts to spin down? It makes me wonder: what is my programming? What will be left of me?"
A beautiful meditation on what it means to live life: as a parent, as a person with MS, as an "inward" dreamer. This was a thought provoking story, poetically told.
A beautiful meditation on what it means to live life: as a parent, as a person with MS, as an "inward" dreamer. This was a thought provoking story, poetically told.
August 26, 2018
There is much to like in this book. It’s a very open reflection of the mind of an odd man with a very serious disease. The honesty of his madness is eye opening and moving. The trouble is that I struggled to like him or to engage enough with him to care enough (which is unusual for me as I’m a bit of an emotional wreck/soft touch usually)
May 3, 2019
Mucha paja y poca chicha.
December 1, 2018
A beautifully written examination of a complex neurological disease on a personal, historical, and scientific level that is accessible, but also warm and witty.
April 2, 2018
This review was originally posted on StrupagI enjoy the odd memoir and the description of this particular title grasped my attention. Probably for a variety of reasons 1) my Mum and my Aunt have MS 2) I have my own illness which requires a constant battle of learning how to live and 3) I wanted to learn more about the neurology of MS.
Before I started I must admit I'd no idea who Christian Donlan was, so I'd no idea what to expect in terms of writing - wow this man can write! It turns out he's an award-winning journalist, I can see why. From the first paragraph, I was hooked. You might look at the title of this book and worry that it'll be a bit heavy-going. Fear not, Donlan's writing style is absorbing, he makes the 'technical' stuff easy to read. Most of all, it's like sitting down in a room with a friend, chatting. That's really the best way I can describe this book. Donlan's writing and his turn of phrase is a delight - subject matter aside.
Donlan shares with us his journey as a thirty-something husband and new father as he discovers that he has MS.
But it's more than just his story. We learn about neurology and MS itself. Donlan tells the story of his own illness but also educates the reader on the scope, variety, and stages of MS. As I said, my Mum has MS so I have an understanding of the disease, but Mum's symptoms are largely different from Donlan's. I knew this could happen, as everyone's MS is different, but reading about further symptoms and challenges outwith my own, narrow field of vision was illuminating.
Likewise illuminating, inspiring-even is Donlan's incredible honesty within these pages. As a reader, I felt Donlan was completely open and honest, even when it perhaps might not reflect so well on him. I applaud his bravery and openness.
From my own personal perspective, Donlan's processing of his diagnosis was, I guess, reassuring. I could relate so much to that realisation that your life isn't going to be quite like you had envisioned. In fact, I rarely highlight text when I'm reading but there was much of this book that spoke to me, that I felt was worth noting and remembering.
Donlan's exploration of his relationships with those around him was a further area of great interest to me. It made me consider differing perspectives, not only how hard diagnosis and illness can be on the patient but on those around them too.
I fear I've rambled on a bit here, jumping all over - apologies. There is just so much to this book - a glimpse into a family at a turning point in their lives, the honesty, the impressive writing, the informative and educational side. Donlan lets us into his world and I guarantee that everyone will find something to take away from this book.
Before I started I must admit I'd no idea who Christian Donlan was, so I'd no idea what to expect in terms of writing - wow this man can write! It turns out he's an award-winning journalist, I can see why. From the first paragraph, I was hooked. You might look at the title of this book and worry that it'll be a bit heavy-going. Fear not, Donlan's writing style is absorbing, he makes the 'technical' stuff easy to read. Most of all, it's like sitting down in a room with a friend, chatting. That's really the best way I can describe this book. Donlan's writing and his turn of phrase is a delight - subject matter aside.
Donlan shares with us his journey as a thirty-something husband and new father as he discovers that he has MS.
But it's more than just his story. We learn about neurology and MS itself. Donlan tells the story of his own illness but also educates the reader on the scope, variety, and stages of MS. As I said, my Mum has MS so I have an understanding of the disease, but Mum's symptoms are largely different from Donlan's. I knew this could happen, as everyone's MS is different, but reading about further symptoms and challenges outwith my own, narrow field of vision was illuminating.
Likewise illuminating, inspiring-even is Donlan's incredible honesty within these pages. As a reader, I felt Donlan was completely open and honest, even when it perhaps might not reflect so well on him. I applaud his bravery and openness.
From my own personal perspective, Donlan's processing of his diagnosis was, I guess, reassuring. I could relate so much to that realisation that your life isn't going to be quite like you had envisioned. In fact, I rarely highlight text when I'm reading but there was much of this book that spoke to me, that I felt was worth noting and remembering.
Donlan's exploration of his relationships with those around him was a further area of great interest to me. It made me consider differing perspectives, not only how hard diagnosis and illness can be on the patient but on those around them too.
I fear I've rambled on a bit here, jumping all over - apologies. There is just so much to this book - a glimpse into a family at a turning point in their lives, the honesty, the impressive writing, the informative and educational side. Donlan lets us into his world and I guarantee that everyone will find something to take away from this book.
July 29, 2018
Stumbled upon this book by accident, I was researching gender roles and I saw the title and was like yup I have to read this one. So not what I was looking for, but it is such a wonderful heart breaking story.
December 14, 2017
The unmapped mind- Christian Donlan
This is a book I chose to read from Netgalley in return for a review. It consists of the author's experiences with MS in the lead up and in the first 2 years following his diagnosis. The testimony is interspersed with factual sections covering the history of treatments for MS from its discovery during 19th century to the present day.
The author is a professional writer and journalist, mainly writing video game reviews. This admits is an ideal occupation for someone with his condition.
His personal story is very honest and brave. He faces up to his long periods of denial and the bad coping methods he used and how he caused pain to his close family.
Running simultaneous to this experience, the author became a parent. He talks a lot about the brain development of his daughter, often as a comparison to his own slowing brain processes.
I found the book fascinating, as I had previously understood very little about MS. I also enjoyed the comparison and descriptions of his daughters brain development. As a person with an incurable condition myself, I appreciated the struggle he experienced adjusting his life to a new situation. I deeply appreciated his honesty and determination not to gloss over his shortcomings but to analyse and face them head on. I feel this could be very helpful to some in his situation.
I would have appreciated more information regarding past neurology discoveries and the development of the science, as the title I felt believed.
Generally the book is well written, easy to read and kept my attention so much, I read it in one sitting. A good addition to this genre.
This is a book I chose to read from Netgalley in return for a review. It consists of the author's experiences with MS in the lead up and in the first 2 years following his diagnosis. The testimony is interspersed with factual sections covering the history of treatments for MS from its discovery during 19th century to the present day.
The author is a professional writer and journalist, mainly writing video game reviews. This admits is an ideal occupation for someone with his condition.
His personal story is very honest and brave. He faces up to his long periods of denial and the bad coping methods he used and how he caused pain to his close family.
Running simultaneous to this experience, the author became a parent. He talks a lot about the brain development of his daughter, often as a comparison to his own slowing brain processes.
I found the book fascinating, as I had previously understood very little about MS. I also enjoyed the comparison and descriptions of his daughters brain development. As a person with an incurable condition myself, I appreciated the struggle he experienced adjusting his life to a new situation. I deeply appreciated his honesty and determination not to gloss over his shortcomings but to analyse and face them head on. I feel this could be very helpful to some in his situation.
I would have appreciated more information regarding past neurology discoveries and the development of the science, as the title I felt believed.
Generally the book is well written, easy to read and kept my attention so much, I read it in one sitting. A good addition to this genre.
February 9, 2019
One of the befuddling aspects of MS is that its manifestations are unlike anything that came before. Nerve pain is a good example. You have to dig for descriptions to communicate the experience of the pains, sensations and various symptoms to caretakers and loved ones. Christian Donovan is a gifted writer. Listening to his descriptions were a delight. I found myself thinking yes...yes...yes... He also did a good job of evoking the uncertainties that surround the path of this progressive disease that can produce so much dis-ease.
It is surely a sign of our times that Donlan honed his writing skills writing reviews for video games. It was a revelation to this six-decader that you can make a living, even support a family, with this ancient skill in such a recently sprouted field.
It is a sweet and melancholy description of an unfolding disease. I recommend it highly for anyone near MS: the diagnosed, friends, family, healthcare providers, or anyone with an interest.
It is surely a sign of our times that Donlan honed his writing skills writing reviews for video games. It was a revelation to this six-decader that you can make a living, even support a family, with this ancient skill in such a recently sprouted field.
It is a sweet and melancholy description of an unfolding disease. I recommend it highly for anyone near MS: the diagnosed, friends, family, healthcare providers, or anyone with an interest.
July 4, 2022
I really struggled with this memoir. My interest is in the MS but that only accounts for a fifth of this book. The author gets a few symptoms, is diagnosed, has treatment - that's it. The rest seems to follow the American school of thought when it comes to memoir writing, which is to include anything at all you want to, as long as it's well-written. And this is well-written, intelligently so, cultured and delicate at times, but that doesn't stop it being totally irrelevant - at least to me. So we learn about the author's kid (endlessly!), his wife, his work, his trip on the bus, chatting to a guy on the green who might be a ghost, his dad, his ill brother, walking down a corridor, holidays, it just goes on...and on...and on. He also exhibits a certain smugness at times and seems to regard his diagnosis with glee - something to write about! - which makes him difficult to warm to.
May 20, 2019
I have just been diagnosed with MS and I was so happy to have purchased this book to learn more about the disease. I wanted to learn about from a layman's point of view but this book was not very helpful to me. The author rambled on and on. I still read the book to the end because I always give every book a fair chance.
Though the author did give examples of what he was experiencing he still left a great deal to the imagination. We who are being diagnosed want something more explained to us. We are petrified of this disease. We do not want rambling. I appreciate the author explanation of the things that he was going through and especially when he was trying the medication. That was extremely helpful to me.
Though the author did give examples of what he was experiencing he still left a great deal to the imagination. We who are being diagnosed want something more explained to us. We are petrified of this disease. We do not want rambling. I appreciate the author explanation of the things that he was going through and especially when he was trying the medication. That was extremely helpful to me.
November 24, 2017
This is the memoir of a man newly diagnosed with MS. Married to a nurse and with a small daughter there are some times when he seems to have this thing sorted. However, the whole is really drear and maudlin to the extreme. He seems in a very short period of time to go from normal interventions to something way out of the ordinary and the whole is like a giant weight on his shoulders. I have no idea how i would react in the same situation and yes, maudlin is to some extent to be expected but I don't think i would have written and published about it. It was heavy going and really didn't define either the disease or its treatment and difficulties in a way that i would remember
March 2, 2018
I enjoyed reading this book. It is a memoir written from the point at which the author is diagnosed with Multiple Sclerosis (MS) and then the following couple of years. The diagnosis coincides with with the birth of the author's daughter, so there are lots of family experiences and reflections around being a first time parent mixed in with the inevitable hospital appointments. Some of the chapters cover the history of the disease.
The title is misleading I think. It is about Neurology, but only really in the context of MS.
Thank you to Netgalley for an advance copy of this book in return for an honest review.
The title is misleading I think. It is about Neurology, but only really in the context of MS.
Thank you to Netgalley for an advance copy of this book in return for an honest review.
April 6, 2022
This is a memoir about being diagnosed with multiple schlerosis at the same time as having your child starting to learn to walk and talk and explore the world around. The author looks at the neurological differences between them as his world shrinks and her world expands.
I found this a very interesting memoir. It had an easy writing style that really worked for audiobook and the whole book had a good structure to it, even when it had flashbacks or the author started talking about something in the past. He goes through the signs of M.S. and when he started noticing something was wrong, discussing his brother (who had a brain tumour) as he did so, and then diagnosis and telling his friends and family before he got into life with an incurable illness (when he starts to think about his old friend who also had an incurable illness). Along the way, he talks about being a father to his young daughter and how he had to change how he looks at things because of her.
This was a really interesting book and I liked him talking about the little neurological differences he noticed which I didn't realise could be related to M.S, as well as how he and his wife had to adjust to the changes. When he talked about his wife having to deal with his reaction to his illness (in how he could be a little flippant about the effects), I found that a consideration I hadn't thought of before and I was glad he included it.
I would have liked to have seen some more neurological exploration (especially with his toddler daughter) but this is very definitely a memoir and a well-written one at that.
4.5 stars!
I found this a very interesting memoir. It had an easy writing style that really worked for audiobook and the whole book had a good structure to it, even when it had flashbacks or the author started talking about something in the past. He goes through the signs of M.S. and when he started noticing something was wrong, discussing his brother (who had a brain tumour) as he did so, and then diagnosis and telling his friends and family before he got into life with an incurable illness (when he starts to think about his old friend who also had an incurable illness). Along the way, he talks about being a father to his young daughter and how he had to change how he looks at things because of her.
This was a really interesting book and I liked him talking about the little neurological differences he noticed which I didn't realise could be related to M.S, as well as how he and his wife had to adjust to the changes. When he talked about his wife having to deal with his reaction to his illness (in how he could be a little flippant about the effects), I found that a consideration I hadn't thought of before and I was glad he included it.
I would have liked to have seen some more neurological exploration (especially with his toddler daughter) but this is very definitely a memoir and a well-written one at that.
4.5 stars!
July 30, 2018
I won a free copy of this book; this did not influence my review in any way.
Three and a half to four stars.
I was immediately pulled in to Donlan's memoir of parenting with MS. His frankness and honesty are compelling and while he is often hard on himself for how he coped with the initial diagnosis, his outlook is typically cerebral but accepting. He intersperses personal chapters with pithy chapters on neurology and MS research that made me wish he had taught my neurology classes in school. The irony, of course, is that Donlan has periods of anomia, foggy thinking, and other neurological symptoms himself, but these rarely seem to adversely affect his writing. By the end of the book I found some of his metaphors to be overused and wrought (and I sometimes had to reread sections to glean his intent), and while the book is generally presented in a chronological fashion, his style sometimes feels more stream-of-consciousness than anything else. While I do not have MS, I could identify with many of Donlan's reflections on parenting through illness or difficult times, making this book a heavy read at times, but one I am glad to have read. I think his book will speak to those living with neurological diseases and other health challenges, especially MS, but it is still accessible and interesting to those who enjoy memoirs and narrative non-fiction on health and medicine.
Three and a half to four stars.
I was immediately pulled in to Donlan's memoir of parenting with MS. His frankness and honesty are compelling and while he is often hard on himself for how he coped with the initial diagnosis, his outlook is typically cerebral but accepting. He intersperses personal chapters with pithy chapters on neurology and MS research that made me wish he had taught my neurology classes in school. The irony, of course, is that Donlan has periods of anomia, foggy thinking, and other neurological symptoms himself, but these rarely seem to adversely affect his writing. By the end of the book I found some of his metaphors to be overused and wrought (and I sometimes had to reread sections to glean his intent), and while the book is generally presented in a chronological fashion, his style sometimes feels more stream-of-consciousness than anything else. While I do not have MS, I could identify with many of Donlan's reflections on parenting through illness or difficult times, making this book a heavy read at times, but one I am glad to have read. I think his book will speak to those living with neurological diseases and other health challenges, especially MS, but it is still accessible and interesting to those who enjoy memoirs and narrative non-fiction on health and medicine.
April 16, 2020
“I have never really liked the fact that I have a brain🧠”- how do you not carry on reading after an introduction like this?
•
Christian Donlan’s daughter springs into the world, ironically as Christian discovers there is something very wrong with himself. The things that used to be second nature now seem noticeably harder to do...
•
𝟛 𝕓𝕠𝕠𝕜 𝕓𝕪𝕥𝕖𝕤 📚
📕”Multiple sclerosis has a destination, and one I am all too aware of, but it has no set timetable, and it has posted no itinerary...and at its worst, multiple sclerosis is nothing”
•
📗Neurological diseases are ultimately attacks on individuality. When these diseases attack the brain, they cannot help but attack the person being endlessly remade within it.
•
📘”With disease it is often a patient’s story that is truly broken: their own conception of their life trajectory which has suddenly changed and been compromised as much as their physical function”
•
𝕎𝕙𝕒𝕥 𝕀 𝕣𝕖𝕒𝕝𝕝𝕪 𝕝𝕠𝕧𝕖𝕕💎
I didn’t know much about MS before this book. Now I know just a little more. I love how little chapters on the interesting history behind MS is inserted throughout the book, and how the author bravely takes on MS as ‘an adventure’. It’s never easy.
•
ℝ𝕖𝕔𝕠𝕞𝕞𝕖𝕟𝕕𝕖𝕕 𝕗𝕠𝕣: Anyone with an interest in neurology, Multiple Sclerosis & like how the title puts it, “learning how to live”
•
Christian Donlan’s daughter springs into the world, ironically as Christian discovers there is something very wrong with himself. The things that used to be second nature now seem noticeably harder to do...
•
𝟛 𝕓𝕠𝕠𝕜 𝕓𝕪𝕥𝕖𝕤 📚
📕”Multiple sclerosis has a destination, and one I am all too aware of, but it has no set timetable, and it has posted no itinerary...and at its worst, multiple sclerosis is nothing”
•
📗Neurological diseases are ultimately attacks on individuality. When these diseases attack the brain, they cannot help but attack the person being endlessly remade within it.
•
📘”With disease it is often a patient’s story that is truly broken: their own conception of their life trajectory which has suddenly changed and been compromised as much as their physical function”
•
𝕎𝕙𝕒𝕥 𝕀 𝕣𝕖𝕒𝕝𝕝𝕪 𝕝𝕠𝕧𝕖𝕕💎
I didn’t know much about MS before this book. Now I know just a little more. I love how little chapters on the interesting history behind MS is inserted throughout the book, and how the author bravely takes on MS as ‘an adventure’. It’s never easy.
•
ℝ𝕖𝕔𝕠𝕞𝕞𝕖𝕟𝕕𝕖𝕕 𝕗𝕠𝕣: Anyone with an interest in neurology, Multiple Sclerosis & like how the title puts it, “learning how to live”
July 25, 2025
A beautifully written account of Christian's diagnosis and early struggles with Multiple Sclerosis. I think this would give a decent insight into someone newly diagnosed with this unforgiving condition, which has to be one of the most frightening diseases to deal with for the rest of your (probably average lifespan) existence. As the author notes numerous times, not every person with MS will have all the same issues and symptoms, but a few universal experiences really resonated with me as someone who cares for a loved one with MS.
The thing I always stress is that, much like plenty of other conditions, MS does not discriminate and it does not care who you are or where you are from. It will slowly and cruelly take things away from you. It is an illness fraught with absurdity and chaos. I think this book does a reasonable job at explaining this, and also goes into a bit of detail around neuroscience (but in a very understandable way). Everyone will deal with MS in their own way, and Christian's personality and thought processes shine through. It is very British and matter-of-fact in tone, which I appreciate hugely.
Please consider reading this or other similar works to get a view of this very mysterious and devastating condition.
The thing I always stress is that, much like plenty of other conditions, MS does not discriminate and it does not care who you are or where you are from. It will slowly and cruelly take things away from you. It is an illness fraught with absurdity and chaos. I think this book does a reasonable job at explaining this, and also goes into a bit of detail around neuroscience (but in a very understandable way). Everyone will deal with MS in their own way, and Christian's personality and thought processes shine through. It is very British and matter-of-fact in tone, which I appreciate hugely.
Please consider reading this or other similar works to get a view of this very mysterious and devastating condition.
March 14, 2025
I was living with MS for years before being officially diagnosed in 2021. I got annual MRIs, and I did not take any meds due to side effects. I had one flare up in 2021. My legs decided to a break, and I was numb from the waist down. I decided to try MS-4 from Uine Health Centre. The numbness and Muscle spasms went away after a couple of weeks, but it took almost 3 months to walk properly without a cane. In June, it will be four years without incident, and I am extremely happy that I made the decision to not take any meds and went for the MS-4 formula even though my neurologist got upset and one told me to quit my job because I will be disabled. Well, I am not disabled, I still refuse to take those meds, and I am doing just fine. Believe in yourself and go with your instincts. Doctors don't know it all. I’m surprised a lot of people with MS haven’t heard of the MS-4 protocol, I got the treatment from uinehealthcentre. com I am absolutely confident that this protocol offers a viable solution. I hope you find it helpful.
December 5, 2020
So normally when I'm reading a hardback the first thing I do is get rid of the cover - the crust of the book, if you will - so I can hold the actual thing in my hands without slippery paper in the way. But this wasn't my own copy, so I had to keep it on. Every time I folded in the cover's edge to keep my place I was confronted with the author photo. I'd stare at this beaming, twinkle-eyed, Paddington bear looking motherfucker, and think: there sits a man too nice for this bastard world.
Neurological conditions are terrifying. I have lost family to dementia and cancer, and I'd pick cancer any day, if I had to choose, just to avoid that gradual ebbing of self. Donlan cheerfully confronts this existential horror, searching for meaning, or at least beauty, in the damaged brain. Does he succeed? Does he reach catharsis, or any kind of reckoning? Jury's out. But his efforts are worthwhile all by themselves. Spiriting stuff.
Neurological conditions are terrifying. I have lost family to dementia and cancer, and I'd pick cancer any day, if I had to choose, just to avoid that gradual ebbing of self. Donlan cheerfully confronts this existential horror, searching for meaning, or at least beauty, in the damaged brain. Does he succeed? Does he reach catharsis, or any kind of reckoning? Jury's out. But his efforts are worthwhile all by themselves. Spiriting stuff.
May 2, 2018
A brave book, I thought. In it, Christian Donovan lets us in to his life and describes his journey with multiple sclerosis (MS). I appreciated his analysis of his feelings and relationship challenges very much, as I too have the disease and sometimes struggle to understand my reaction to it.
Everyone's MS is different, as he says, so it was also very interesting to read about his version of the condition.
From a practical viewpoint I can only applaud his achievement in writing so comprehensively about his life when physical symptoms can obviously make things very difficult.
I found the book a good mix of relevant facts about multiple sclerosis and experience of the condition.
I hope Christian continues to benefit from treatment and keeps the condition at bay.
Many thanks to goodreads and the publishers for a free copy of the book in exchange for an honest review.
Everyone's MS is different, as he says, so it was also very interesting to read about his version of the condition.
From a practical viewpoint I can only applaud his achievement in writing so comprehensively about his life when physical symptoms can obviously make things very difficult.
I found the book a good mix of relevant facts about multiple sclerosis and experience of the condition.
I hope Christian continues to benefit from treatment and keeps the condition at bay.
Many thanks to goodreads and the publishers for a free copy of the book in exchange for an honest review.
June 12, 2025
If Christian's memoir can be distilled down to just one thing it is that a disease of the brain is practice. It takes time to understand and patience to learn to live with. The Inward Empire, Mapping Out the Wilds of Mortality and Fatherhood is exemplary because it is not the story of an incurable disease, but of a calamitous diagnosis making landfall within a family.
-Valerie Morales
Read the full review at: https://www.bookbrowse.com/mag/review...
-Valerie Morales
Read the full review at: https://www.bookbrowse.com/mag/review...
September 8, 2024
A crushing bore.
One thing the writer and editor should have done before submitting this to the printers should have been to count the number of 'I's in the book.
They are everywhere. Unfortunately, whether 'I' signals something of work is very much in the eye (or I) of the beholder.
Random lines: "I noticed recently that as I walk these halls to and from my blood tests, I will tend to think that I am somehow singular. When I pass other patients, I sometimes wonder what it is they are here for but I never ponder..."
It's like that for the whole book. That might be tolerable if there wasn't such a gulf between the writer's need to talk about himself and the energy that is transmitted to the reader. Let's look a bit of the above again. 'I will tend to think that I am.... So what is wrong with 'I think that',or 'it passes my mind that'...What's with all the modal hedging? We are not in court.
Not sure what the superlative official reviewers were drinking, but It was an utter struggle to read this to the end. What makes this so jarring is that the writer clearly fancies themself as some kind of literary giant. Not meaning to make light of MS, but sometimes it felt like this writer was relishing the diagnosis as a reason to pen their 'opus'.
Despite that that this writer knows how to string a sentence together, their rambling pontifications are rendered no more intersting from their constant banging on about their daughter . I kept wanting to force this guy to listen to Bill Hicks'- Your Children Aren't Special.
One thing the writer and editor should have done before submitting this to the printers should have been to count the number of 'I's in the book.
They are everywhere. Unfortunately, whether 'I' signals something of work is very much in the eye (or I) of the beholder.
Random lines: "I noticed recently that as I walk these halls to and from my blood tests, I will tend to think that I am somehow singular. When I pass other patients, I sometimes wonder what it is they are here for but I never ponder..."
It's like that for the whole book. That might be tolerable if there wasn't such a gulf between the writer's need to talk about himself and the energy that is transmitted to the reader. Let's look a bit of the above again. 'I will tend to think that I am.... So what is wrong with 'I think that',or 'it passes my mind that'...What's with all the modal hedging? We are not in court.
Not sure what the superlative official reviewers were drinking, but It was an utter struggle to read this to the end. What makes this so jarring is that the writer clearly fancies themself as some kind of literary giant. Not meaning to make light of MS, but sometimes it felt like this writer was relishing the diagnosis as a reason to pen their 'opus'.
Despite that that this writer knows how to string a sentence together, their rambling pontifications are rendered no more intersting from their constant banging on about their daughter . I kept wanting to force this guy to listen to Bill Hicks'- Your Children Aren't Special.
August 29, 2025
An inspiring journey through a man's nervous system embodied by its operator. The ways Christian can explain neurological phenomena are captivating. His journey through the brain and his sickness occurs within a journey in adult life as a father, husband, and individual person.
I found this book intriguing albeit sometimes lengthy in description.
I found this book intriguing albeit sometimes lengthy in description.
January 9, 2019
I just can't finish this book. It's way too ramble-y, and although the man has a horrible disease, I can't help but find this text boring. The author has an interesting way of words when creating imagery though, I'll give him that. Sorry :(
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