I have been doing a lot of reading and writing of late. It feels like a total luxury to be spending my days with books and words and I am enjoying it immensely. As well as writing a good chunk of my own book, I have enjoyed reading a lot of other people’s work. I’ve been reading books about stroke, books about the brain and the mind, books about neuroscience and neurosurgery, books about illness and the experience of inhabiting an unwell or differently abled body. Some of these books I’d read before but felt it was important to return to during the research process for my own. And I’ve been reflecting a lot on the perspectives from which these books are written, the positions from which that their authors write, the particular take they have on health, recovery, and wellness. Following my stroke, many people told me to read Oliver Sacks, which I duly went away and did. I know that Sacks is much beloved as a sort of avuncular figure in the field of popular science, and that many of you find his writing humane and amusing and insightful. Perhaps I too might once have felt that way, but from the perspective of a person who has experienced brain injury he really is “the doctor who mistook his patients for a literary career” in the memorable words of one reviewer. He may be a fantastically able writer with an undeniable facility of communicating the way that brain deficits might hold a key to the mysterious operations of our grey matter to a general audience, but his early work is so deeply exploitative of his patients, their complex conditions, their lives and their experiences, that I find myself unable to reconcile myself to anything of potential worth in his output. In the months after my stroke, I wept with horror at the Frankenstenian narrative of Awakenings. If you find this book (or the subsequent saccharine film) either moving or humane, I suspect you’ve not reflected on the deeply dubious ethics of each of Sayers’/Sacks’ decisions, or really imagined what it would have meant to be one of his jolly lab rats.

The problem with Sacks’ writing is its exploitative objectification of his patients, the particular ways he chooses to use their stories to tell his. The medical practitioner is always in a position of power, possessing knowledge that patients invariably lack. That power and knowledge is precisely what enables practitioners to make specialised decisions about treatment, but it also allows them to place patients in one box or another. And at their worst, such boxes have moral judgments attached to them: judgments about patients characters or lives, their identities or motivations. I personally find it quite surprising that this kind of morally judgemental writing might command popular appeal, but from the evidence of Allan Ropper’s bestselling Reaching Down the Rabbit Hole: Extraordinary Journeys into the Human Brain (2014) this appears to be the case.

One appalling chapter in this book is entitled: “What Seems to be the Problem: A Politically Incorrect Guide to Malingering, Shamming and Hysteria.” Anyone who has not spent time on a neurology ward may well be surprised and shocked by the basic information this essay contains: that women patients (for they are mostly women) frequently present to neurologists with severely disabling symptoms for which no objective physiological basis can be found. These disorders are variously labelled dissociative, somatoform, factitious, functional – or hysterical. They are the cause of seizures, pain and permanent disability. Over a third of patients in neurology wards are thought to be suffering from such disorders, and their effects are frequently life-changing. I have a personal interest in such matters not just because I know what being on a neurology ward is like, but because I was (incorrectly) diagnosed with conversion disorder by an eminent neurologist before the reality of my stroke was discovered by a student and an MRI scanner. I had a “real” brain injury which caused my hemiplegia, but the disabilities caused by dissociative or somatoform disorders are “real” too. Only tiny numbers of patients who are diagnosed with these disorders could ever be said to be “conscious” fakers or malingerers and though the root of such issues is assumed to be psychological, the symptoms and problems they cause are undeniably physiological. But Ropper is clearly tired of the particular physiological reality of these patients as well as of what he refers to as the “American . . . touchy feely” approach toward them. How he wishes he could tell them (in what he refers to as the “Irish” manner) that they are “wasting my fecking time.” And though Ropper self-consciously acknowledges that there is something “politically incorrect” in his categorisation of such patients as “hysterical time wasters,” he is much less up-front about the implicit judgments he makes about his patients’ characters, background, and appearances. For example, there is something deeply creepy in his assessment of a nineteen-year old suffering from pseudo-seizures (which he categorises as a hysterical response to the actions of her overly controlling family) as a “lovely young woman” in a tremulous body.

I suffered a “real” brain injury, but if my disabilities were (as was initially assumed) the result of a psychological rather than physiological infarction to my brain would my distress and suffering have been any less real? The attitudes of some of the nursing staff on the neurology ward changed dramatically toward me when it was discovered that I was suffering from stroke rather than conversion. Their treatment of me, in Ropper’s terms, as a “hysterical time waster” made the worst day of my life just that little bit more horrific. Ropper is jocular, witty, readable, in much the same manner as Oliver Sacks but his writing also betrays a disturbing level of judgmental intolerance which Sacks never displays (despite his tendency to objectification Sacks is also far more self-interrogatory).

Happily, the objectifying approach of both of these men to their patients is not the only position from which a neurologist might write. Suzanne O’ Sullivan’s It’s All in your Head: Stories from the Frontline of Psychosomatic Illness (2015) offers a deeply revealing exploration of functional and dissociative disorders. Her book carefully traces the change in her own patient approach over the course of her career, from a naive student who assumes those suffering are “fakers” who have to be “found out” to a mature professional who treats each case with compassion and understanding. She reveals how her own assumptions drive diagnostic errors (a patient whose behaviour she finds irritating and initially diagnoses with conversion actually turns out to have a brain tumor), and unpacks how judgmental approaches to the functional symptoms with which patients present might impede rather than enable their recovery. The key concern of any patient diagnosed with a dissociative disorder is that they are not being taken seriously, that those entrusted with their care are making assumptions about the “made up” nature of their symptoms. While Ropper’s intolerant approach to this issue widens the gulf of distrust between doctor and patient, O’Sullivan attempts to bridge that gap with basic understanding. Stroke, epilepsy or tumor are disorders of the brain which have a impact on the body, but the physiological impact of disorders of the mind, O’ Sullivan, argues, should be treated as no less real. This is a book in which patients are never objectified but treated with a thoughtfulness and compassion that is also rigorously ethical. The same approach characterises Henry Marsh’s extraordinarily humane Do No Harm: Stories of Life, Death and Brain Surgery (2014). If you have any sort of passing interest in neuroscience and neurosurgery I heartily recommend both of these books.

The narrative position of the neurologist is certainly a privileged one (few of us might claim to understand the operations of the brain) but often the neurological patient can write from a position of privilege too. I reflected on the particular privilege of patients after reading the important memoirs of two fellow young stroke sufferers, Robert McCrum and Jill Bolte Taylor. A doctor recommended McCrum to me because his stroke “was quite like yours”, as well, I think, because we both hailed from literary fields. McCrum is undoubtedly a good writer, and the book’s opening sections are quite brilliant at putting the distinctive horror of actually having a stroke into words. The book also offers moving testimony of the deeply loving and supportive relationship between McCrum and his wife, Sarah which makes it well worth reading. But I had questions too. Following his stroke, McCrum received private care in an exclusive London hospital. For me, there was a little too little acknowledgement of the unusual privilege of his post-stroke position, and a little too much name dropping from the Ivy and other metropolitan celebrity haunts. Reading the book because I was primarily interested in McCrum’s experience of stroke and recovery I personally could not give a hoot whether it was Salman Rushdie or Jeremy Paxman who turned up at his bedside with yet another magnum of restorative champagne.

Still, I found McCrum’s account intriguing both because he was honest about his experiences (he spends a lot of time deeply angry and frustrated) as well as because, as the agent of his own narrative he also seemed curiously passive: he is constantly “waiting” for movement to return, “waiting” to recover function, “waiting” to return to his old life. The title of the book – My Year Off – weirdly reinforces this sense of the stroke sufferer as a passive object, and for me immediately begged the question: a year off what? “Normal” life? But what is “normal”, anyway, following a stroke? McCrum’s stroke forced, as he acknowledges, a catastrophic break in his life’s narrative, but from the title of the book you might assume a stroke was little more than some sort of yuppie sabbatical. For me personally, recovery in the months immediately following my stroke was a demanding job all in itself: rather than having “a year off” work, I was in fact engaged in the hardest work I’ve ever done. (And the work of recovery is still ongoing)

Though McCrum thoughtfully articulates some of the frustrations involved in stroke recovery, he gives little sense of the agency of the recovering patient. The precise opposite is the case with Jill Bolte Taylor. Reading My Stroke of Insight one is left in no doubt at all that the author is an active agent in her own narrative. Her account of observing and dealing with her deteriorating brain during the process of her stroke is completely extraordinary, and it is worth reading the book for these opening chapters alone. Speaking personally, I found it interesting that neither she or McCrum were afraid during their strokes, and that both describe how their brain responded to its own destruction with a kind of curious detachment. This matches very precisely with my own experience and I can quite honestly say after observing the behaviour of my brain in the moments during and following my stroke that the physical experience of death is one that holds no particular fear for me. I am pretty sure Jill Bolte-Taylor would say the same.

Bolte-Taylor’s distinctive ability to narrate the destruction and reconstruction of her brain comes from the very particular position of an expert in neuro-anatomy (prior to her stroke she was working on the physiology of severe mental disorders like schizophrenia). But the undeniable authenticity both of Bolte-Taylor’s experience and her expertise is what, for me, makes her book troubling, and not a little dangerous.

The Stroke of Insight of the book’s title is Bolte-Taylor’s perception, following the haemorrhage and clotting in her brain’s left hemisphere, of the interconnected rather than discrete nature of selfhood. Having a basic understanding of the relationship between phenomenology and neurology, I can see how one might certainly argue that reality is fluid and that the boundaries of the self are one of the human brain’s many convenient fictions: since the moment of our birth, one of the brain’s principal tasks is to define us – our bodies, and our minds- as things of edges. These edges between us and the objects we encounter are what allow us to function effectively in the world from developing the skills of proprioception (an awareness of our bodies’ position in space) to appropriate social behaviour. With her brain’s edge-making centres destroyed, one of the effects of Bolte-Taylor’s stroke is the perception that Everything is Connected, but rather than examine this concept carefully and philosophically, she instead espouses a vague mysticism that I find all the more astounding because it comes from someone with a rational scientific background. And beyond the suggestion of the fluid nature of all things and a newly empathetic awareness of her fellow humans, it is quite hard to precisely grasp the nature of Bolte-Taylor’s “insights”: indeed, her account of connectivity bares close resemblance to several rather hackneyed late twentieth-century accounts of the effects of psychedelic drugs (it’s worth noting that she’s is extremely judgmental about the recreational use of either drugs or alcohol). With the zeal of the newly-converted evangelist, she writes of her refusal to engage with negative people due to the “energy they bring” and her miraculous post-stroke abilities to actively choose between the states of compassion and anger. When she talks about how selecting “angel cards” helps her to structure her day, I’m afraid I completely lost patience with her. Angel cards are not going to help you with the day-to-day struggles of disability or brain deficit and, as a fellow stroke sufferer, I felt deeply insulted. To me, Bolte-Taylor’s fuzzy notions about the Great Spirit and Mother Earth are even more troubling than religious dogma because they do not acknowledge the partiality of their own position, their own deeply ideological nature.

And I’m not sure the actual science of the book stands up to much scrutiny either. Bolte-Taylor argues that her stroke allowed her to reject her boundary-obsessed, rational, masculine left brain in order to her embrace her compassionate, feminine, fluid, creative right hemisphere. (The value-laden nature of these terms are all acknowledged by her in her book). I’m no neurologist, but even I know that here she’s espousing a simplistic, dualistic model of the brain that has long since been discredited. As Bolte-Taylor herself well knows (and as her experience of recovery indeed testifies) the brain is characterised by its flexibility, adaptability and plasticity, and such oppositional left side / right side models of neurological function are as outmoded as a Victorian phrenological head. One key irony of her book, it seems to me, is that her loosely spiritual “insights” into the interconnectedness of life, the universe and everything, are falsely predicated upon one essential boundary: the one dividing left from right.

Bolte-Taylor’s book has proved enormously popular among a general audience. Perhaps that is because we all want to hear that one of the worst things we can imagine – a terrible injury to our brains – can, in fact, be transformed into a wonderful gift. I do wonder, though, how popular the book is among the stroke sufferers to whom it is frequently recommended, who do not regard their disabilities as a gift, who have experienced no great spiritual insights into the nature of the human condition as a result of brain injury, and have no sense of their stroke as a mechanism that enables them to turn their emotions on and off.


As I work on my book I think I may find it useful to keep a record of my thoughts and my reading. If you are just here for the knitting there’s no need to read these posts!

Books mentioned in this post:
Oliver Sacks, Awakenings (1973)
Allan Ropper & B.D Burrell, Reaching Down the Rabbit Hole: Extraordinary Journeys into the Human Brain (2014)
Suzanne O’Sullivan, It’s All in Your Head: Stories from the Frontline of Psychosomatic Illness (2015)
Henry Marsh, Do No Harm: Stories of Life, Death and Brain Surgery (2014)
Robert McCrum, My Year Off: Rediscovering Life after a Stroke (1998)
Jill Bolte-Taylor, My Stroke of Insight: A Brain Scientist’s Personal Journey (2006)

123 thoughts on “patients and doctors

  1. If you can find it, I recommend Bonnie Klein’s stroke memoir Slow Dance. It is the story of her stroke and her marriage to a physician. She is a feminist film maker here in Canada.

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  2. Kate, I just have to thank-you for your intelligence, your candor and your beautiful writing. I’ve followed your blog on and off for several years, starting when I discovered knitting at the age of 22 and had just started nursing school. I keep coming back to it and I always find new entries where I learn so much and laugh out loud and feel enlightened from seeing a new perspective: reading about your experience recovering from stroke has been particularly valuable to me, both in my career and personally. I became a nurse after experiencing my own illness and, during nursing school, developed epilepsy. It is amazing, isn’t it, the brain’s ability to just accept what is happening to it. I never woke up from a seizure afraid or worried. What was frightening was taking the medications, learning to adapt to a brain on those medications, and the new constant interference of medical stuff in my life when I just wanted to get on with it.

    It has been very helpful to keep my own experiences in mind as a nurse with my patients. I work in a trauma/neurological intensive care unit, so I see a lot of people with neurological injuries. I wish sometimes that I had the chance to know how they progressed once they left us in the acute care part.

    So thank-you for sharing. It is greatly appreciated.

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  3. Beautiful, thought-provoking post.

    You’ve received a lot of book recommendations already, but in the line of medical ethics and institutional sexism and racism you might also be interested in The Immortal Life of Henrietta Lacks. It’s a reckoning of how the medical establishment benefited from research done on cancerous cells taken from a woman, while her family knew nothing.

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  4. Thanks for reminding me why I prefer fiction to non fiction. I always know what I’m getting can’t be confused with ‘the truth.’ And why, when they say it’s all in your head does it always sound like, somehow, that’s not part of your body? Isn’t the mind a function of the brain or is it some kind of bubble that’s removed from and floating around somewhere? This book you’re working on, will it be self published, too? I’ve found your blogs about recovery so interesting I may have to make an exception for this.

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  5. Dear Kate, a much needed in depth discussion about your experiences. Personally it took my neurologist 2 years to figure out what caused my stroke and disability yet my experience was either that it was all in my head and thst not much could be the matter with me as I looked so well. A stroke changed so many things and after 6 years I am still recovering in my own way: 3 steps forward and 2 back which means I have tiny leaps of faith. My personal view is that strokes are as individual as the person and instead of going all spiritual into Lalaland I draw strength from the caterpillar journey to a butterfly. When a caterpillar starts to spin it’s cocoon it must surely feel as if its dying but it transforms into a beautiful unique butterfly. To me you are an example of such butterfly. You meet a new reality with courage and with conviction. Your experience is a valid one and your writing clearly shows your wish to accept, embody and explain what was unexplainable. To transcend into the possible , the impossible has to be explored and the word itself is I M possible. Looking forward to your book and your perspective. Anne

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  6. While it’s not a book about brain injury per se, you might read “The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures” Which captures the, sometimes tragic, disconnect that can occur between patients and doctors, especially when there is a large cultural divide. I found it an interesting commentary on the medical system, though the events of the book take place some time ago, I found its conclusions still relevant. Our local nursing program requires it as part of their curriculum.

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  7. Maybe it came up already, and it is also not stroke related but rather the “hysteria”-sort of book, but did you ever read The Shaking Woman by Siri Hustvedt? Who’s a wonderful writer and researcher…

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  8. Wow Kate – I always appreciate your intellectual enquiries, no matter what the subject matter. Academia’s loss is certainly a gain for the rest of us! Great recommendations by other readers too – I’ve added a number of them to my queue at the library.

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  9. Kate thanks for this post. As a fellow young stroke survivor i have also been somewhat shocked by the attitude of medical staff as ‘ i don’t look like I’ve had a stroke’. It took another event and lots of tests for my PFO to be closed, 10 years later and for the last 6 mths I still feel as if i was making it up!! I carry a pic on my phone showing the MRI scan, fed up of medical staff outside of neurology not seeming to realise the task of rewiring my brain so i can count my knitting stitches when i used to be an accountant. I’m very fortunate to the lovely neuropsychologist who identified my deficits and explained that a female of the same age with the same stroke wouldn’t have the same problems. Fascinating, but i so wish it hadn’t happened as it has affected my life options and took my key skills that i loved. However, I’ve taught myself​ to spin and i can knit again, i just get the patterns muddled occasionally!!
    I’m not over keen on R Mc Crumm and A Marr as i think their post stroke stories are not the norm for most people in the UK, who seem to muddle on leaving hospital.

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  10. Thank you. Keep it up. I am a stroke survivor, at first misdiagnosed. Horrifying.
    I’ve read most of the books you mention. I took what I could but left a lot behind, mostly because everyone’s stoke is so different as is their brain and life experience before the stroke. I’ll read everything you write with interest.

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  11. A colleague introduced me to your blog and I am grateful she did! As a critical care nurse, I found reading through your experiences insightful. Medicine has a long road ahead moving away from its paternalistic approach. Uniquely identifying someone’s struggle with their illness or disease and respecting the seriousness of that lived experience cannot be devalued or forgotten. Write on Kate! Give em shit!

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  12. Hi Kate! Have you read Antonio Damasio’s books? he’s a neuroscientist… just giving a hint. No romance or fiction whatsoever in his books.

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  13. While not specifically stroke related, this Ted talk is thought provoking. It definitely points out that when it comes to the mental health and other brain related issues, most psychiatrists/psychicans guess what the patient may or may not have. It’s been the acceptable practice for far too long. Sad indeed!

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  14. I am so glad that you have decided to go ahead and write this book. Not everyone, having had a similar experience, would also have the interest and/or skill to do so. I have always been impressed by the clarity, readability, and voice that come through in your writing. I feel that I can always hear the heart of the woman behind the words. Another thing that I have come to expect and appreciate in your work, is the research that you do to give the personal a broader context. I love the unexpected bits that enrich the basic story or information being imparted. And I hear by today’s entry and see by your stack of books that you are already deep into that preparation for this book.

    In your earlier writing about your recovery from stroke, something that really struck me, was the difference between how far health care assisted you on your path to recovery and how much more was left to your personal motivation and perseverance. Once you were able to walk, communicate, and manage the basics of personal self care, it seemed as though you were on your own. I have great admiration for your inner strength and drive to keep working toward the life that you wanted for yourself. Your age, your intellect, and the support of your loving partner and friends must have been a great boon to you.

    If I look at your experience I see implications for other stroke patients. Since most are considerably older than you, how does that affect the attitude of doctors and family toward their recovery? What if they have no loving support or those who might have been there for them abandon them instead? Once the health care system determines that they have done there bit, where do individuals and their families get help and support?

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    1. Hi Nancy,

      I hope you won’t mind my commenting on your comment. I am delighted that Kate had the help that she did have, and I’m sure you are right that her determination and the support of Tom, their families and their friends made a huge difference. My Dad had a major stroke at the age of 75, although he spent some time in rehab it was clear that there wasn’t the funding for him to have the level of attention that might have helped him rebuild neural pathways, nor were my mother and I given much information or explanation until 7 years later I made a friend through work who happens to be a stroke consultant. Of course we should have made more of a fuss but we were in such shock ourselves and I also have a demanding job that we only had energy for the next task in front of us.

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  15. Firstly, I’m sorry that the first comment to this well-considered post was negative. Instead of allowing you to have your own experience and critique of Sacks’ work, the individual simply took offence and left in a huff (really?!). This post was great and introduced me to a number of books I might never have encountered as well as went beyond the platitudes and gave them a deep look. Thank you for this! And to be less formal – you rock!

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  16. I used to be a psychiatric nurse in the early 80s. I found that those patents with what were thought of as ‘real’ mental illnesses (psychosis) had a higher status than those that were termed ‘neurotic’, often with depression or anxiety. Those termed hysterial were the lowest of the low! There was a lack of compassion and empathy for many for these people who often had wretched lives. There seemed to be a fear by some professionals of being seen as gullible or being ‘taken in’. This was despite it being made very clear to us during nurse training that these conditions were not a deliberate choice.

    I found this post a fascintating read.
    I

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  17. I was one of those who recommended Oliver Sacks and you responded that you couldn’t ‘stomach’ him. I really don’t ‘get’ your criticism of his approach (especially when Henry Marsh used a similar stance). He didn’t build his career on either Awakenings or ‘the man who…’ – he always maintained his neurological practice and it’s clear from his autobiography that the success of ‘The Man Who’ was a considerable surprise. Everyone has a different response to different writers – that is why there are so many successful novelists and not just one storyteller, and of course I can’t make you like Oliver Sacks, but why attack ‘the man’ and not the ‘ball’?
    I have derived considerable pleasure over the years from the late Doctor Sacks books – because of your rather snide comments I have decided to stick to his literary canon and not your blog. There are lots of other knitting bloggers, lots and lots.

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  18. there’s enormous twaddle out there, and monstrous physicians and nurses. i am so sorry to hear of your misdiagnosis.
    as for spiritual or emotional experiences following a stroke, i wonder if , first of all, the god spot in the brain is implicated in stroke? my mother had this well-documented experience, actively feeling the presence of god for 48 or 72 hours — not as a hallucination, but as companionship. any such experience — including angel cards — i think must be scrupulously dealt with as the lived experience of the patient. as you suggest in your moving account of conversion therapy treatment. i learned this from a schizophrenic friend, whose (late) father appeared to him and told him if he started shooting heroin and drinking again, he would save the world. his psychiatrist said to him, this is your lived experience, and we will talk about that next time for as long as you like. this time, i need to tell you that it was a hallucination, and that doing this will lose your family, your job, your progress, and your life. death at your own hand is what we are going to talk about today. i’ve never forgotten thar, and i think any “directives” — including those which so offend you as an atheist or agnostic — need fairly to be dealt with. william james *Varieties of Religious Experience* is the masterpiece of utiliatianism, and compassionate, wrudite agnosticism in this regard. i think he was also a physician.
    very exciting. do keep us posted.

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  19. I’ve been reading your blog since 2009, but rarely comment. However, I wanted to specifically thank you for this post and for all of your recovery related posts you have written over the years. Why have they touched me so? My husband had stroke at the age of 34 in 2012 and your recovery related posts have been immensely helpful to me over the years as we have had to find a new “normal” for our lives.

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  20. Not just for knitting, but inspiration. When my husband was ill I was lent a really helpful book called L’infarctus ne tue pas by Dr G-R Rager. Though actually it sounds as though you should abandon all serious reading and catch up on some really fun novels, but I thought I would mention it because it really helped me. Firstly to understand, and then to adjust and then to manage my hopes and expectations. And though it was about heart attacks rather that strokes, there was so much wisdom in it.

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  21. Thank you for this thoughtful and beautifully written piece. You’ve articulated for me the vague feeling of discomfort I’ve always had reading Oliver Sacks–I’ll admit I find the stories of his patients fascinating, but his writing has often given me a sense of unease, even of voyeurism. I was also interested to read your comments on My Stroke of Insight. A friend recently recommended this book to me–not because of the “insight” itself, or for an interest in neuroscience. We are both mothers of young children, and my friend found Bolte-Taylor’s description of being non-verbal and re-learning her own “edges” gave her an idea of what the experience of newborn babies might be like. If I do read it, I will certainly approach it with a healthy dose of skepticism. I’m so looking forward to your book. And thank you for sharing your reflections with us as you do your research.

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  22. I enjoyed reading this for a variety of reasons. First, books are life. Second, I studied psychology and always found neuropsychology to be particularily fascinating, therefore the topic was of great interest. Thirdly, and most importantly, you add an extraordinary human element due to your own experience. I found this whole article to be well-written and engaging with your passion on the subject being very palpable. I wish you the best of luck with your book!

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  23. Never only here for the knitting. I’ve been reading your blog for many years now and have tremendously enjoyed every “off-topic” post. Please, do go on, it’s what we’ve signed up for! :)

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  24. Experiences of being disbelieved, not listened to, and patronised are seemingly so common. You write:

    ‘ “Malingering, Shamming and Hysteria.” Anyone who has not spent time on a neurology ward may well be surprised and shocked by the basic information this essay contains: that women patients (for they are mostly women) frequently present to neurologists with severely disabling symptoms for which no objective physiological basis can be found.’

    I had just read Hilary Mantel’s 2003 memoir ‘Giving up the Ghost’, which, as well as exploring parts of her life in an extraordinarily vivid way, rails against the inability of medical professionals to listen and to believe & understand physical problems. Disabling symptoms may have a physiological basis that hasn’t yet been recognised by anyone. So you get ignored, or given some drugs or a psychological treatment.

    Hilary Mantel links her medical treatment to the reason why we needed feminism in the 1970s. As a student her law lecturers at Sheffield university, ‘men in drip-dry nylon’, criticised her ‘meticulous’ intellect & approach. The (male) psychiatrist who went on to admit her to hospital treated her with Largactyl and other heavy duty drugs, and it was only through her own ‘meticulous’ research that she discovered what was wrong with her body – at the age of 27. Her self-diagnosis of endometriosis was confirmed by a sympathetic doctor, and relief from pain via major surgery could be looked forward to.

    Mantel makes it clear that to be heard, to make people listen, and to be believed, can be so hard – and, my word, she’s bright, clever, independent, resourceful – what a nightmare it must have been.

    I’m sure your book will be such a thoughtful exploration of your own experiences – look forward to reading it.

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  25. This may be of interest to you – http://www.astitchoftime.com/ – her book is being published later this year
    She presents her journals written at the time of her experiences.
    As a health professional, I do recognise the lack of humility you have encountered and how it comes across in the writing of some practitioners. Your book will be influential in the canon – often it is through the quality, attentiveness and intensity of our listening to individual experiences that we can be of most use, or simply be….thank you for all you are doing in this important area.

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  26. I remember reading about the treatment of female hysteria during the 19th century and being horrified an the treatment they received. That similar attitudes still exist beneath the surface is depressing. I look forward to the book you write so well.

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  27. This was a fascinating read for me Kate. I have not read any of the books you mention but I intend to now and I feel sure that I will read them with a much more discerning and critical eye having read your blog first. You may be interested in reading The Minority Body by Elizabeth Barnes, an American philosopher married to a Scot, my nephew.
    On a different note, I recently bought your Book of Haps and now have several future projects in mind, but I particularly enjoyed reading about the history of haps and shawls and the etymology. My mother used to tell us to hap up before going out on a cold day in Glasgow but she also used to refer to any warm garment she loved as a “right good hap”. My husband though, who is also a Glaswegian, had never heard the word used for garments but knows it from the petrochem construction industry where a hap is a cover that protects an area being worked on, especially in welding. He tells me that this is not just in Scotland but all over the country.

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  28. As a person who had sepsis, a 60 coma and then waking up to find I could not even move or talk or eat, I am fascinated with how much the brain can relearn. I had to relearn all the basics, from swallowing, eating, walking..everything. I was so frustrated and angry at myself, but instead of saying that that feeling was normal I was immediately put on anti depressants….sigh. The amount of work it takes to get back to a person who can be independent is unbelievable. I am grateful you take the time to discuss these things. As I recovered I kept going to your blog for support. Thank you. And oh yes..I can knit again, sew again, and embroider again!

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  29. Well, at first I was into your blog for the knitting but your incisive reflections on your stroke experience has made your blog my number 1 favorite! I am learning so much! I took up knitting 2 years ago in hopes that it would help keep my mind sharp because as I approach 70 years of age I am experiencing memory issues. I had been avoiding stranded color work until I recently discovered you on Pinterest. I am working on my first attempt, the Totoro that was used for your Paper Dolls tam, and color work is proving to be just the challenge I need. Knitting is more than just knitting, it is therapy for the soul, for the mind, and for the body! Using your blog as you work on your upcoming book about your stroke experience is most welcome and I look forward to future installments. Thank you so much for sharing your indomitable spirit with us!

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  30. [insert lots of bad words here] I am a biologist, but not at all a doctor, and I know about biology from the species level up, not from the cellular level down (just so you know my biases and experiences). That said, I am appalled at how doctors and neurobiologists continue to see a separation between body and self, as you have described so well here. Sure, believe in a soul, if one wishes, but do not, as a doctor or scientist, treat a sick person based on the current limits of knowledge of how the brain works. As I understand it (again, I really am no expert, in the slightest), what we laypeople think of as our “brain” is a physical object which perceives, records, and has been changed by what it experiences over time. Aside from the greater level of complexity, that’s not so different from how muscles respond to exercise. So, why, then, do the doctors and neurospecialists you have described here refuse to see the similarities? Thank you for writing so well on this, and I look forward to your book (or books, I hope).

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  31. Dear Kate, another great post I really enjoyed. Great to see you back in teaching mode now and again – you do it so well. I am horrified that books like Allan Ropper’s are still accepted for publication in this day and age, but I guess that’s naïve. I was alerted by a review in the Guardian (https://www.theguardian.com/books/2015/jan/04/reaching-down-the-rabbit-hole-review-neurologist-brain-tales) to the fact that it was actually written not by Ropper himself but by one B. D. Burrell, mentioned on the title page but not generally in the publicity; Ropper merely provided the material. Burrell would not have had a relationship with the patients, as their clinician would, but would have had one with Ropper. No wonder Ropper became the central character in the book. Though I do wonder whether it is thanks to Burrell’s observing eye that Ropper’s overweeningness comes out quite so clearly, in the same way as portrait painters can subtly bring out unpleasant characteristics in their sitters if they so choose. I imagine even ghost writers like to exercise authorial integrity when they can.

    Regarding the left/right brain thing, I highly recommend to you, if you haven’t already encountered it, Iain McGilchrist’s 2009 book ‘The Master and His Emissary’, which created enormous (positive) waves in the academic community when it was first published and is becoming more and more influential as times goes by. Being, like you, dissatisfied with the simplistic, dualistic account of the difference between the cerebral hemisphere, he set out to completely rethink their relationship and has come up with a much more complex and satisfying answer. Roughly speaking, his argument is that the language and analytically inclined left brain is supposed (or developed) to function as the tool of the holistic right brain, which takes in the unbroken stream of experience, thought and perceptions, hands them over to the left for processing, and then waits to receive the results of the analysis back for putting together again – but the left brain has got out of hand, refuses to give up its data, and sidelines its boss entirely. McGilchrist has the perfect academic background for his theme, having started in English and then moved to psychiatry (he is completely fluent in the literature of neurology). A collection of rave reviews here: http://178.62.31.128/comments/ , and free download of the first chapter here: http://178.62.31.128/wp-content/uploads/2016/03/The_Master_and_his_Emissary_by_McGilchrist.pdf . (He’s also rather charmingly provided a free download of his 68-page bibliography, presumably for the benefit of his erstwhile colleagues in neurology.) The book is a bit of a doorstop, but is divided into two very distinct parts, only the first of which is directly relevant to brain studies (though since the second half is cultural studies, you might find that interesting too – I haven’t read it myself yet).

    All the best, Kersti

    Liked by 2 people

  32. I came to your writing for the knitting, but since have found food for thought in everything you write. This stuck a cord with me, as someone who suffers from depression and dealt with my the medical profession both with appalling insensitivity and also very well – it does depend on who you talk to on the day when you can carry on no longer as to what treatment you are offered. The latest treatment offered was a reading therapy, no account taken of the fact that when you are depressed you can barely get out of bed and reading a book is way beyond you……….and then when the depression lifts I don’t want to read about it or be reminded in anyway of how bad I felt. Over the years I have found the best things for me are in the routines of my life, getting exercise, gardening, and in recent years knitting – which helps occupy my mind and the hours. There is a huge failure to recognize that depression can occur with on obvious cause, it’s somehow wired into me, and that I’m not hysterical, in a bad marriage, a bad job etc., it just happens. I wish doctors had more time ( failure of the modern NHS I think) and there was more understanding.

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  33. Such wonderful insight, Kate. It is very distressing to hear of your treatment as a patient. I am hoping that you don’t think all in the medical professional are so narrow minded. In NZ we have an amazing poet, Glen Colquhoun, who is a GP working for the poor and disadvantaged. He has written a wonderful collection of poems about his experiences as a GP called “Playing God”. You have to love him for the title alone! There is a wonderful speech he made on “The Therapeutic Uses of Ache” here : http://books.scoop.co.nz/2009/11/12/the-therapeutic-uses-of-ache
    Please look this up….it is so moving.

    A couple of his poems are on strokes, though I think not particularly relevant to your situation. You might like this poem:

    A Note Of Warning to Patients When All Else Fails

    Sometimes the needle is too blunt.
    The stethoscope is too quiet.
    The scalpel will not cut.
    The scissors chew like old men’s gums.

    Sometimes the book has not been written.
    The pill cannot be swallowed.
    The crutches are too short.
    The x-rays hide like dirty windows.

    Sometimes the thermometer will not rise.
    The plaster will not stick.
    The stitches cannot hold.
    The heart conducts a normal ECG.

    Then I have to ask you what to do.

    Which is what you might
    have wanted all along.

    Not surprisingly, this GP is not a man of wealth in monetary terms. But in Wisdom and empathy……

    Liked by 3 people

  34. Having long admired your exceptional ability to articulate the experience of brain injury, I am really pleased to hear that you are writing a book about your experience, Kate. Love your fierce honesty. My own eloquence seems to have deserted me since my TBI, which is all the more reason to look forward to your book: I’ve tried and failed to find any particularly helpful memoirs so far. All the best with the writing.

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  35. Kate, As always very interested in what you have to say,I felt much the same about Oliver Sacks writing.It has been quite awhile since I read Robert McCrum’s book however seem to remember being drawn in by his descriptions of his personal feelings.
    I am please to know I have your book to look forward to as you write so very well and your blog has capatured my interest for some years. catherine

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  36. I read first about the treatment (in all senses of the word) of female so-called hysterics in a wonderfully humane novel by Siri Hustvedt called ‘What I Loved’ – her sister, Asti, had written a PhD upon the subject of early French psychiatric patients in particular, and her research and her particular abhorrence of many systemic failures emerged as one of the novel’s main characters, Violet. Asti’s research has now been published as ‘Medical Muses: Hysteria in nineteenth-century Paris’; on a similar note is Lisa Appignanesi’s ‘Mad, bad, and sad: A history of women and the mind doctors’.

    Thank you, as usual, for sharing your writing, and your marvellous self, with us all.

    Liked by 1 person

  37. Ha! This brings back such horrific memeories. My sister had a lump,under her right arm, her doctor looked at it, diagnosed a cyst and gave her an antibiotic cream = my mother insisted on a second opinion. The day after the second doctor saw her, she had a double mastectomy! Presenting at age 34 with breast cancer in a palatable lump is a zebra diagnosis. Doctors are trained “if you hear hoofbeats, it’s horses, not zebras”.
    Two years later, she started to involuntarily lose weight, became very tan (naturally olive complected, but this was VERY TAN), and grew woozy if she had to stand for any period of time. She started sitting on a kitchen stool to do the dishes or she would pass out. Her different doctor secondary to a move, told her she was just too busy and prescribed Valium for “nerves”. I diagnosed her by reading a Merck’s manual. She insisted on an endocrinologist appoitment, and he agreed with,me that she had Addison’s disease.
    The take home her is that 50% of all doctors graduate in the bottom half of their class. Yes, their pass rate is higher (75% = passing at my school, where I was a pharmacy student), but still. Present with a zebra problem,and you will be misdiagnosed again and again until,you finally see the doctor,who,got 90 and better on all the tests and can recognize what’s in front of him or her. This is why I keep recommending Gideon and other, type in the symptoms and the program spits out potential diagnoses to the administration at my hospital. That list of potential diagnoses could be a life saver. Alas, my sister died too soon when she fell and suffered a proximal humeral break. The ortho told her these breaks had a high risk of thrombosis, but didn’t put her on an anticoagulant and she died, very suddenly, barely 10 days post fall from a pulmonary embolism. I miss her every day.

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  38. Kate, This post is so well written and easy for a “lay woman” to understand. I have followed you for years, and love everything about you. You are a fighter and you found love. Your life is fairy tale to me. Thank you for sharing your thoughts. I look forward to reading your book. Keep reading, writing, and knitting. You are loved!

    Liked by 1 person

  39. Thank you for writing this Kate, as ever your thoughts are worth reading. Reading your blog posts about your stroke and the aftermath was extremely helpful for me as my Dad suffered a massive stroke in 2008 and went on to live a half life for 8 more years ( he died last Autumn). You gave me an inkling of what was going on for him. In my efforts to understand I tried to read some of the books you mention above and did not find them helpful. I’m so looking forward to reading your book- thank you for making the effort and I hope that this reading, writing and reflection will be beneficial to you yourself.

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  40. Hi Kate, Thanks for this very thoughtful review. I can’t wait for your book to come out so I can give it to my neurologist husband (& I will also read it myself!). I have always found him to be very patient and caring about all his patients, including those who seem to present with psychosomatic illnesses, so I imagine you (we) will be ‘preaching to the converted’ on some levels, but I believe everyone can benefit from your wisdom and insight.
    Good luck, I imagine it won’t always be easy to write. I look forward to following your progress.

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  41. my daughter once reminded me of a quote— “How you do anything, is how you do everything.”

    Well, after reading your thoroughly researched + passionate writing, I realized you are truly awesome!

    Thank you from the bottom of our hearts for taking us with you on your discoveries.
    I certainly place my trust in you; with wool, colour, design, cardigans and healthcare!

    You can see by all the comments that we are very grateful.
    Teri x-x-x-x-x-x

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  42. Thanks for the thoughtful reviews. I was recently discussing The Brain that Changes Itself (which I note in your stack) with a friend who is recovering from a traumatic brain injury and my husband, who has MS. We found it to be interesting and insightful, so I am curious how you found it. My friend has been searching for some other books to read as well so I will be passing this post on to her.

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  43. What an amazing post. Thank you for sharing your observations. You gave me food for thought I was not expecting. Best of luck to you on your book. Surely your unique voice and views will add significantly to the literature on the topic.

    Liked by 1 person

  44. Kate,
    I would read anything you write! You’re a humble, inspirational, thoughtful woman.
    Don’t stop writing or knitting!

    Thank you, and it was a pleasure meeting you and Tom at EYF!
    Rosie
    Chicago, USA

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  45. I love hearing your thoughts and reviews. After Dan’s cancer diagnosis I read the Sontag book, and a few others relating to the experience. I remember having a very mixed reaction as well, although the titles escape me at the moment. I’ll be very anxious to hear/read more of your thoughts about the patient experience etc. xoxo

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  46. I’m very much looking forward to seeing how you will write your own story, Kate! If you’re still looking for other reads, you might check out Mike Scalise’s book The Brand New Catastrophe, which just came out this year. It’s focused on his own diagnosis and treatment for a brain tumor, at the same time as his mother is dealing with complex heart problems, and it’s both funny and compassionate.

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  47. Interesting, thank you for sharing. Has anyone suggested ‘When the Air Hits Your Brain: Tales from Neurosurgery’ by Frank T. Vertosick Jr.? A highly trained and dedicated surgeon (who later suffered with Parkinson’s Disease) who gives a view of his patients and his work that is worthy of a read.

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  48. Thank you for your thoughtful analysis delivered with personal experience and superior research. I sincerely appreciate your review as it brings me a new perspective on physical and psychological injuries. I am disappointed in your dismissal of Bolt-Taylor, many people need a little passion and magic and maybe even angel cards in their lives, this sometimes feeds the creative soul – and for we simple minded….hope.

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    1. Well, you had me very early on with the “non-knittingness” as I have dealt with a sister with somataform disorder which caused a breakdown in our family. I pulled on my “Nurse armour” to deal with the reality of her situation and we have remained “friends”.
      Thankfully a rehab centre supported us all and she is living independently tho’ I think not fully “Happy”. Hugs WAH

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  49. I didn’t care for Sacks either. I read Marsh and subsequently gave copies to my doctor nephew and my goddaughter, a doctor in training. I have also read Doidge and others. This afternoon our knitting group at the library will include a woman with a closed brain injury. She needs a lot of help and encouragement and patience – and she should have had a lot more help early on. It isn’t about “waiting” but about “doing” right from the start. I’ll be very interested in what else you have to say!

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  50. Such an interesting and thought provoking article ,Kate, and also valuable input from your readers. It would seem that when doctors feel unable to diagnose a problem in female patients, they resort to the ” hysteria” diagnosis which is must easier than admitting they haven’t the foggiest. I recently had an appointment with a neurologist, who was at a loss to find the reason for my problem, but instead of being honest, he manipulated certain tests to inform me that I had Parkinson’s. He eventually was forced to admit that that wasn’t the case, and that he couldn’t explain my pain. I don’t think he would have behaved in such an unprofessional way if I had been a man. Because he saw in front of him an elderly,grey-haired “wifie”, I am sure he thought he would get away with his behaviour. He didn’t! And i don’t think he will want to see me again! But what happens to women who either can’t, or feel they don’t have the confidence to deal with such poor consultations? Thank goodness, not all medical practitioners are like that, but I have a feeling that your book is going to cause ripples and maybe, just maybe, those remaining patronising, patriarchal experts who see women as inferior beings, will become a wee bit more human and listen to us, the patients.

    On a lighter note, to take me out of my ever-present pain, I do fair isle knitting which helps me enormously, so your patterns have given me great relief and solace. Thank you.

    Liked by 5 people

  51. Kate,

    Your inspiration is boundless. Good luck in writing your memoir. Although I have no relevant experience, I look forward to reading your book.

    Regards,
    Pamela

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  52. Thank you, Kate, for your thoughtful insights into these books. I am looking forward to reading your book! I think you are a fiercely determined and brave woman.

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  53. An astounding read! Thank you for continually sharing your story. My husband and I have both had issues, with medical professionals and their preconceived opinions
    without medical tests to investigate the situation…and yet have been lucky to find some very good ones as well, who don’t prejudge or pre-diagnose. So frustrating!

    I was told by one intern that other than a crushed wrist, I had no problems and what I described was not real or even a condition. When the Head of the Department (thank heavens over seeing things) came in and used the misdiagnosis as a teaching moment and pointed out several factors to say, that I did indeed have complications post-op as well as Complex Regional Pain Disorder along with a very, very complicated break. (my physiotherapist told me not to use certain terminologies, when speaking to the medical prof.; as they would assume I was nuts and write me off because they would not look at the mind/body/emotions/external influences as a whole package!)

    Another intern told me I was very sick, had to have more surgery immediately and when I pointed out that someone with my ‘injury’ should not be able to bend their hand in the ways I did and I was sorry but I didn’t agree with his diagnosis. That I would continue to work hard to improve my wrist and to avoid any further surgeries as they risked the gains I had made thus far; proceeded to tell me –Well yes, he didn’t understand how I could do what I did with such an injury at all and it didn’t make any sense because no one had achieved it before but that I would indeed be back, when I decided I WAS sick and would then have immediate follow up surgery. He said I just needed to -decide to be sick-! The anger I barely held in check I expressed to my husband…saying if the intern had spoken to someone who took his word as gospel; he would have absolutely ruined their lives. I also had a re-knowned surgeon tell me I was just very afraid and I didn’t understand anything and that was my problem; when I pointed out an issue with the crookedness of my wrist, during my post-op/healing.

    My husband suffered a massive heart attack 4 yrs ago. ER staff said he wasn’t having a heart attack and to take him home. I had a very polite fit, strongly refused their suggestion. They kept him longer and ran enough tests that proved he did have one. We’ve had two judgemental Dr.s, who thought he was arrogant when he said he was not used to functioning at a 50% capacity like some people(where he worked many people only gave the bare minimum in their job). He did indeed work at 150% capacity, which is why it is so hard to adjust to a body that doesn’t do anything he wants it to. (friends and co-workers were all shocked because he never got sick, never wasn’t working and was never seen not working beyond full capacity
    when he did work). He remains a square peg they can’t fit into a round hole. A cardiologist said he was considered a ‘success’ when he asked how that was possible when he still has chest pains and several ongoing issues. She said we consider success you lived through surgery, we give no guarantee about quality of life!

    I remember saying that getting better was more than a full time job! And I think adjusting to the new you, is both exhilarating, exhausting and not without its challenges…and very much an ongoing process.

    Thank you for an ever growing list of inspiring/educational books to read and I look forward to your continued insights and wish you all good things, as you write this new book.

    Liked by 3 people

  54. Not specifically related to doctors and patients, but have you have read “The Nature Fix” by Florence Williams? It is a nice presentation of research on the connection of nature to cognition. I note you spend considerable time out of doors and was wondering if you believe it is beneficial to your ongoing stroke recovery. Some of the research presented was conducted in Scotland.

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  55. Kate, I admire your clear writing. It was very interesting for me to read. And I agree that illness is not a gift nor a punishment. It just happens to some, and dealing with the aftermath is hard work. Of course you learn from life, but I rather learned in a different manner.

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  56. Thank you, Kate, for your wonderful analytic skills in reading the popular literature on stroke and traumatic brain injury, which is often the only reading available to most people who have experienced either. I also noticed on your pile a book by Barbara Ehrenreich that I’d never heard of, and will be taking that out of my own library. I find her to be a marvelous debunker of assumptions that many hold dear (or in ignorance).

    Your book should be marvelous; thanks for taking this task on.

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  57. Best wishes with the writing process. Your personal story and recovery journey will no doubt benefit many so thank you for choosing to write a book. While not directly related to your topic, you might find reading some of the writings of Andrew Solomon such as his book “The Noonday Demons” which was his personal account of a crippling experience with severe depression. His narrative style, personalized account and honest description of many of the medical professionals he experienced was something I found both engaging and very educational. There are so many facets to his journey that in many respects sound similar to what you have experienced that it might make good research fodder! I believe he has also done a TED talk that is available online that might give you a taste of his style and perspective to see if checking out a 500+ page book is something for you.

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  58. Thank you Kate for your thoughtful, intelligent commentary. I look forward to you sharing more
    of this journey with your blog readers. It will help many people. I so appreciate your writing.

    My daughter was in a near-fatal car accident with multiple severe injuries that needed immediate treatment
    during her 3-week hospital stay and ongoing treatment thereafter. When she was being released from the hospital,
    a staff psychologist sat down with me to tell me she also had brain damage and it was a “wait, see”
    concerning her recovery. The hope was the brain would “re-wire” itself and find new pathways to make
    up for what she had lost. The way in which this news was presented to me, suggested to me that this was
    not something to worry about or to consider follow-up. There were no warnings about the emotional impact
    or what to expect. And, because she was age 21 at the time of the accident, I had no access to her medical
    records or doctors. With her other injuries, there was much rehabilitation to deal with but why the brain
    injury wasn’t given, at the very least, some better patient guidance and education perplexes me to this day.

    Liked by 3 people

  59. I had 10 years of misery, seeing unsympathetic doctors, before a most kind and caring neurologist finally diagnosed trigeminal neuralgia. The pain hasn’t gone away, but knowing what it is makes it so much easier to bear. I very nearly hit a GP who prescribed Valium because “I was upset and crying” ……. I was actually screaming with pain!
    Yes, I think women are treated as hysterical first, before lazy doctors make the effort to find out what is wrong. And as an aside, the aforementioned GP googled and printed out info on a funny little lump on my leg, rather than explaining what it was!
    Anyway, let us just rejoice that we are alive, enjoying life ……. and knitting!!

    Liked by 4 people

    1. @ Frayed…yes it is frustrating when you get lack of care. In my elderly father’s experience with trigeminal neuralgia, he spent 3 days in hospital unable to eat or drink. I insisted he be fed via nasal tube directly into his stomach after watching him deteriorate and start to have hallucinations from over dosing on prescribed pain meds and lack of food.

      @ Kate… I see you taking the good and tossing the bad information. Recognizing what applies to you, and obviously educating yourself so that is possible, is long process.
      Its 5 years of education to be an RN and then another year to specialize. Doctors are much longer. Being a compassionate, listening professional takes years of experience. And some of those people never learn it!

      It great to see you to look for answers and self educating so you can advocate for yourself and others. Thank-you for sharing your thoughts on your reading list

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  60. Kate, thank you for sharing these very candid insights into the process you still find yourself grinding through. Please let us hear more on your thoughts on the words offered by “experts”. Knowing full well the writing of a book does not mean you know your subject matter… as evidenced by our need to go sit in the stacks and pull them off the shelves and gather together multiple sources before trying to take any opinion/stance. I like you the more I read your strong and considered words. You go girl!

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  61. Hello, I agree with Jen, Atul Gawanda is someone to look at. I have heard him interviewed several times. You list is quite impressive and I appreciate your take on all of these authors. Continue on and we will be with you!

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  62. Really interesting, Kate. I haven’t read extensively in these areas, but have tried to read both Sacks and Bolte Taylor. I finished neither as I was disgusted by Sacks exploitative tone, and, frankly, annoyed by the poorly examined ideas of mysticism and the vagaries about being gifted with debilitating injuries.
    I would love to read more of your well reasoned thoughts on your experience.

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  63. Keep up the hard work – both in the knitting and the post stroke living worlds. You offer us so much insight and inspiration for both.

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  64. Your book is going to be so interesting, in the meantime, more posts like this please. Can I add my name to the recommendation of Atul Gawande. He’s a thoughtful and inspiring writer who deals with serious subjects in a compassionate way.

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  65. Hi Kate,
    As an academic, I’ve grown weary of denunciations. Yes, as Haraway put it, it matters what stories we tell to tell other stories with. Yet, how stories are understood and what we learn from them cannot be determined in advance no matter how carefully we craft them and distance them from others’ stories and their shortcomings. Perhaps another place to start-off from is to understand that stories have social lives and some stories are more or less good to think with.

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    1. To follow this line of thought, I am a neurology nurse. I have a background in caring for those with seizure disorders. At any rate, there is a nurse theorist, Jean Watson, who bases her work on phenomenology. A key concept in her theory of caring is that we each have a unique background, history, experience base. When we encounter another person, care for another person, both participants are changed in some way by the experience of caring.
      Medical/nursing/health education serves as a jumping off place for one’s career. It is the experiences that must build and guide the carer as she refines her approach to people and their problems. I must say I am very sorry to know you had such a horrible experience, but glad that you are so well equipped to hopefully change the caring experience of others. I look forward to reading your new book.

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    2. Nicole, as another academic I think that is exactly what Kate is doing. She is examining the stories doctors and patients use and how they use them.
      Kate, I don’t comment often these days, but I always read your posts with great interest. I’m looking forward to reading this book of yours.

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  66. Thank you for such a thoughtful post. I share your discomfort at real people’s experiences being used as book-fodder, especially when patients may not be in a position to give informed consent (as is often the case in neurology/psychiatry). I can’t speak for medics, but in my own profession (clinical psychology), the tendency is to use made-up but plausible composites of patients as examples in writing.

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  67. Ironically I was just thinking about this today – the appropriateness of doctors or anyone in a health related field writing about their experiences with those in a vulnerable position and what is the most ethical and elegant way of doing so. Thanks to your post I’ll definitely be reading “It’s All in your Head”!

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  68. I am a sufferer of daily migraines, or one constant migraine, whichever way it is looked at. I have found and felt all of the dismissiveness of medical providers. They have had me questioning whether I am malingering or avoiding or whatever. I finally found a neurologist who did not question my constant pain. But alas, he moved away. I have given up and now just live between the bed and the couch. Resigned to my place in life.

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  69. For those of you with Kindles, Henry Marsh’s book is on offer at the moment for 99p. Also, Celia Fine discusses the lack of evidence for left brain/right brain in Delusions of Gender, if you haven’t read it already.
    I am looking forward to reading your book!

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  70. I find your blog practical, clear, informative and very well written. I am caring for a woman who has brain damage as a result of her heart having stopped. No cause was ever detected. It was started again by emergency services, several weeks in hospitals got some mobility back and now she is slowly (happened in 2013) but steadily improving. Reading your narrative has calmed me down, made me look at details, speak frankly and be optimistic. I am a knitter and your blog was recommended to me by another knitter (Sarah Upton). These are probably extraneous details but so be it.

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  71. Kate,
    There was a time when I just came for the knitting, but over time, your generous sharing of your life, Tom’s life (and bourbons) and Bruce’s adventures, has made me feel like you are a good friend that I don’t get to see very often (never). I have grown to enjoy your pictorials of Scotland and have been inspired by your love of your land. I feel like I have watched your relationship with Tom blossom and grow to your wedding with your constant companion Bruce by your side. Your commentaries are always interesting, informative and enjoyable and that you will share them with those who don’t know you as a knitter makes it even more robust. Thank you for sharing your difficult and your happiest moments with us, and so many, many in between. And keep those amazing knitting books and yarns coming too! Your “friend”, Linda D.

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  72. Very interesting indeed! In the same kind of area (though addressing consciousness rather than neuroscience) I enjoyed Head Trip by Jeff Warren – structured as 24 hours in the life of your brain.

    I have only recently read some Oliver Sacks (The Man Who Mistook His Wife For A Hat) and what you say about his approach chimes absolutely with my thoughts!

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  73. Kate,
    Thank you for your insight. As an oncology (cancer) nurse, and a nurse in general, I have seen too often the patriarchal personalities of medical professionals which dismisses the voice of the patient and their needs or their perspective. Unless we have gone through the same situation, and even then everyone’s experiences are different, we cannot truly know what it is like. I have no frame of reference as to what it is like to have cancer and thus cannot impose my desires on someone else. I think too often those of us in the medical field have good intentions that fall horribly flat. We as a profession must provide truthful (this being the key) education and then respect the decisions and wishes of those we care for. This is rarely done here in the United States and it just well angers and frustrates me and breaks my heart.

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  74. I am one who came here for the knitting, the sheep, the landscape — but have found new reasons to stay that may now outstrip those first interests. I am extremely grateful for your exceedingly fine, articulate, and honest mind; for your deeply compassionate sensibility; and for your truthful, kind, and may I add scrappy writing. (“Scrappy” may be an Americanism — but I wrote, and then erased, both “spunky” and “plucky,” which weren’t quite right.)

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  75. Dear Kate,
    It was relief to find someone else who cringes at Oliver Sacks – despite my position as a youngish physician with more than a passing interest in narrative medicine, I’ve not managed to get to the end of any of his books for the feelings of awkwardness and self-indulgence that build up along the way. Havi Carel (and subsequently, Anne Jurecic) restored by interest. I enjoyed Marsh for his struggles with the dark side of decision making, but would have hated to work in his hospital – to find time and again that he had bullied managers and nursing staff into handing over my own patients’ bed space to his. There’s a good podast about the ethics of using other peoples’ stories here http://www.bbc.co.uk/programmes/b07z4djm and John Berger and Jean Mohr write well on the subject http://www.bloomsbury.com/uk/another-way-of-telling-9781408864463/
    I’ve very often used patient stories in my blog and am feeling my way cautiously along this tricky path
    I’m looking forward to your book and further thoughts, thank you
    Jonathon

    Liked by 3 people

  76. Have you read Marion Couttes book The Iceberg? Not about stroke- it’s a description of the two years between her husband’s diagnosis with brain cancer and his eventual death, and is an extraordinary piece of writing. Her husband was the art critic Tom Lubbock and he also wrote a book about his experience called (I think…) Until Further Notice I Am Alive. Very different in tone but equally worth reading, though it was Couttes’ book I thought of when you first asked for reading ideas…

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  77. You ask, “…would my distress and suffering have been any less real?” In a word, No.
    Your narrative is your own and, as a GP, I spend all my days trying to help my patients navigate their narratives.
    I returned to work this week after a 3 month absence due to a foot problem and needing to learn to walk properly again; very frustrating for an ex-triathlete… I’ve spent quite a bit of the last 3 days holding hands, being hugged and sharing stories with my patients. Best job in the World.
    I’m obviously not a neurologist and remember as a medical student sitting in a neurology clinic and saying to the very superior, pompous consultant at the end, “So, neurology is basically coming up with long names for distressing problems and then distressing patients even more by saying there’s bugger all you can do, bar give them a diagnosis?” Then as now I was known for plain speaking and this was 30 years ago.
    I alternately cringed and despaired reading this post. We – the big We of the medical profession – really should do better.
    More than happy to chat if you want to contact by email.

    Liked by 3 people

  78. Fascinating and compelling reading Kate. As a practising psychotherapist, I am constantly learning about the interface between mind and body. So many people think they are split in the Cartesian way, but they are so not! I appreciate your reading so many of these books – several have been on my ‘to read’ list, and I now know which ones to focus on.

    I hadn’t realised you were writing your own book, but I can’t wait to read it when it’s finished! All the best with this new project, and with your on-going recovery!

    Liked by 1 person

  79. Hi Kate, all the very best with your writing journey. I read with real curiosity about the current writings in the field, what you are planning and was reminded of a phone call i had yesterday from a distraught friend who was due to have ‘yet another appointment’ with her GP practice where she was preparing to be labled as ‘Hysterical’ again. Her pain is real, whether it is physical, emotional or neurological. I look forward to hearing more about your latest (of many) projects. I wonder if you have made contact with Andrew Marr (BBC) or perhaps he’s written about his stroke experience so far? i caught a brief interview with him recently where he talked about his stroke and how he has been actively using creativity (painting in his case) to regain movement and interconnections in the brain. Good luck with all your adventures and best wishes to Tom and Bruce and the KDD team as well.

    Liked by 1 person

  80. As always, I really appreciate the concise assessment, personal honesty and accuracy of expression of your writing. I can´t wait to read your book!
    P.S. I have already encountered several doctors who were looking for a psychological cause of physical symptoms FIRST, which I find quite distressing. (E.g. When studying abroad I started having very painful headaches, something I never experienced before. The doctor asked me several times if I missed my family at home and if I was afraid of exams. Turned out the bed at the residence was very old and I had overstretched my neck muscles…) It is good that people of medicine finally acknowledge the importance of psychical well-being for a person´s physical health but not at the expense of proper diagnosing!

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  81. If this post is just a tiny bit of the information and insight we can expect from your upcoming book, I can’t wait for it to be published. It is so important for everyone to be armed with information when we have to deal with the medical community who has so much power over us – important for ourselves and for our families who may have to defend us if we are unable to fight for ourselves. I am sure, Kate, that your book is destined to be the one that all future right-thinking and right-acting physicians are going to be recommending to their stroke patients in the future.

    Liked by 1 person

  82. Wow. Kate, I hope that you will consider submitting this essay for publication somewhere beyond the blogosphere; it deserves as wide an audience as possible — even as you continue working on your own book. Thank you.

    Liked by 6 people

  83. Read every word, Kate. Thanks for the overview and perspective on these volumes, some of which I’ve read. Over the past year, I have been dealing with some health challenges that have ended up in my seeing a variety of specialists. One was a rheumatologist, who, in December, said a couple of things that I couldn’t tolerate, including “I think you like being difficult to diagnose and treat.” HUNH? I just want to get back to work at at absolutely full strength! I fired him. Fortunately, I could. The new rheumatologist’s assessment: “Actually, it’s good news that we can’t diagnose what’s going on. That may mean we can get rid of it permanently. Which of the following options do you want to try next?” I’m also working with a functional doctor, who is the best. The rheumatologist orders tests and works on alleviation of symptoms. The functional doctor and I are working on finding the root cause(s) and straightening things out from that angle. Grateful to be old enough for Medicare (as long as it lasts??).

    By the way, fellow fiber aficionado Deborah Brandon has spent several years writing about her brain injury experience in a book that will be coming out in October. I have known Deb for years (since before all this) and look forward to reading her book. She’s been diligently writing and shaping the material with a developmental editor who’s a friend of mine, and I suspect it will be very good. Here are a couple of clips from her blog:

    “If only part of the discharge instructions included a manual, a list of issues I would face as I recovered. It would have been so much easier, especially if it had come with examples and explanations. I wouldn’t have suffered from as much anxiety and fear that I would always remain as I was, deficient. I would have found ways to manage deficits before my difficulties swamped me with self-doubt.” and “When I spoke to other brain injury survivors, I discovered that many of them underwent similar difficulties, except that, unlike me, the vast majority weren’t relentless in searching for answers. And most gave in to the self-doubt, convinced that they were handling their new life inadequately.” (for more, debbrandon dot com)

    I am greatly looking forward to your book, too. Please keep us posted! And thank you for all your writing and creative work.

    Liked by 2 people

  84. I admire your approach to writing your book and have no doubt you will produce something tremendously valuable to both patients and doctors. Another memoir you might want to consider is Mojie Crigler’s Get Me Through Tomorrow, about her brother’s brain hemorrhage. I heard her give a very moving talk about the process of writing her book as well as about her brother’s ordeal. As a family member, she brings yet another perspective to the discussion. Good luck, Kate. I’m a big fan of everything you do!

    Liked by 1 person

  85. Great insight! I experienced a neurological incident last October when I developed altered sensation to the left side of my face. Initially treated as a stroke subsequent scans etc showed no signs of stroke but nothing changed or improved so not a tia either. Appointments with a stroke consultant, two Neurologists, numerous tests and still no diagnosis and still a numb ish face. Told no obvious cause so am I imagining it ? No !

    Liked by 1 person

    1. I am not medically trained in any way, but two friends of mine have had Bell’s Palsy from Lyme Disease, which affected the nerves on one side of the face.

      Liked by 1 person

  86. Fascinating! Loved reading this. I have felt similar disquiet when reading Sachs and coming across that review some years ago was a ‘lightbulb’ moment for me as it distilled much of my uneasiness. I look forward to further discursions and recommendations safe in the knowledge that the use of Angel cards are unlikely to feature heavily!

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  87. Standing ovation over here…I am so glad you are annotating your own experience as I’ve sent a few people to your site when they need to understand stroke victims’ lives post-stroke. You were so eloquent over that time…

    I was very disturbed to see the above notation that people were called fakers before even the most basic MRI/CT scans were taken. One has to rule out actual disease – and pronto, thankyouverymuch – before then choosing the psychological possibility! In all this it remains true: you MUST demand the care you need. Never settle for being pushed into a category if you know something isn’t right with your body. Sadly, this often means doing what you have – acquiring a deep medical education to ensure you have the language and facts needed for that fight. I look forward to reading the book.

    Liked by 3 people

  88. Thank you for such thorough, focused examinations of the work of these writers. Too often, well-disguised voyeuristic tendencies allow readers to ignore just the sort of authorial assumptions/positions you detail. I look forward to your book and wish you every possible ounce of energy and fortitude as you write it. — Suzanne Wilsey

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  89. I just want to thank you for your discerning mind and bringing all you have experienced with your stroke to a public forum. I don’t feel up to going into details. I just want to validate your insights here and express my gratitude. It has been very helpful.
    Brennan

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  90. So glad you enjoyed O’Sullivan’s book, we interviewed her (I produce Health Check on BBC World Service radio) and she was delightful as well as obviously a great advocate for her patients

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  91. Kate, as a change of pace and perhaps to broaden your perspective, you may want to read “Better,” Atul Gawande author. He is a most excellent surgeon (not neuro but I think you’ll appreciate his fresh take on medicine) and writer.

    Liked by 1 person

  92. Thank you so much for this incisive commentary on what you have been reading. I am afraid that so many of us rush to judgement in a range of fields, but my experience of caring for parents certainly places many doctors – and consultants I encountered especially – near the top of the list. It’s the power, as you say. It is strange that the more power some folks have seem to increase the need/desire to exercise that power – and to make sure that they are indeed seen to have that power.

    I am greatly anticipating your book, and in the meantime more of your comments on your research.

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  93. As a disabilities nurse and avid knitter I am repeatedly fascinated by your insights. Thank you from the bottom of my hand-knit socks for your writing, your designs and your restorative view of the brain and the kneedles! Looking forward to the new book!

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  94. I am compelled to thank you for speaking for those patients who are so quickly labelled as having conversion disorder or having psychiatric illness because the clinician is unable or unwilling to take the time to seek a good explanation. I treat patients with Chronic Fatigue Syndrome and fibromyalgia in a specialty internal medical practice in the US. CFS and fibromyalgia are now a well documented and validated disorders with real diagnostic criteria, if one wishes to know about them and cares to read the research. The CDC and NIH here in the US agree with this. In their past, many of my patients have experienced the blatant disregard you describe, and yes, even neglect and abuse from so called medical professionals who simply want the easy answer and a smaller workload. I have even heard them maligned as a group by diagnosis at a few medical meetings. People are not medical curiosities whose stories are to be collected in case books. They are human beings who come for help and explanations. Hurrah to you for saying so!!!

    Liked by 2 people

  95. Kate, thank you for this insightful post. My husband experienced a traumatic head injury a few years ago that resulted in a stroke and required brain surgery. I could not believe it when he was discharged after the surgery with the statement, “You’re fine, go home”. No follow up. Despite disturbing symptoms and frequent visits back to the neuro department, there was no recognition that something was different and unhealed. It took 18 months and my full time care before he was back. My father was a multiple stroke patient so I knew what to watch for and could understand what was going on.

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  96. Thank you for sharing your insight on these books. Without walking in your shoes it would be difficult to know what to think of these books and how to approach them or the subject. You have given us insight to better approach these and other books on similar areas.

    Liked by 8 people

  97. Thank you very much for this post. Your’s will be an important book to read,
    “As I work on my book I think I may find it useful to keep a record of my thoughts and my reading. If you are just here for the knitting there’s need to read these posts!”
    I absolutely agree – though I wonder whether there might be some omission here.

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  98. As an ex nurse and fellow knitting author and designer I am dismayed to hear that in this country and in the last decade you felt’The attitudes of some of the nursing staff on the neurology ward changed dramatically toward me when it was discovered that I was suffering from stroke rather than conversion. Their treatment of me, in Ropper’s terms, as a “hysterical time waster” made the worst day of my life just that little bit more horrific’
    This is against any training any nurse should have taken and totally not acceptable .
    Which hospital did you get treated in this way ?
    I am hoping it was a rare rare event for to think it is common place is too distressing for the profession

    Liked by 5 people

    1. Ha ha. This is typical of the treatment women get. I complained to my doc about a variety of cognitive problems and he wrote a script for an antidepressant. Turned out at least some of my problems are due to sleep apnea, which I had diagnosed elsewhere. I am certain I have other issues but finding medical care is difficult in the rural area where I live.

      Liked by 1 person

    2. I’m sorry, but it does seem commonplace. My son, who has conversion disorder which has included him being blind, paralysed, and fitting has experienced this disregard frequently in many different places. This attitude also held up diagnosis of epilepsy, and consequently led to additional damage in his brain. His local NHS Trust doesn’t even have a neurology ward.

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