I’m really looking forward to our new knitting-related releases, but wanted to say a few quick words before they begin (yes, it’s tomorrow!) about Handywoman. I’ve had so many wonderful responses to the book – from those in their own situations of chronic ill-health or disability, from those who understand exactly what I’m saying about knitting or the brain, and from those who (like I do) love Shetland. One of the things that pleases me most is that several people have written to tell me that they were not particularly expecting to enjoy the book’s final chapter (in which I discuss the history and ethos of Swedish company Etac, who created the turner, which first helped me to stand and move) but that its message about inclusivity, and the human benefits of good design, really struck a chord. So many kind readers have taken the time to send an email, leave a note here or on Instagram, or, in some cases, to sit down and write a letter to me about what Handywoman has meant to them. These responses have heartened and moved me, and I’ve known every time I’ve read one that this is what writing the book was all about. Because sometimes you wonder, when you are sat there, with the writing. Because writing a book – even when you love writing very deeply, like I do – is a hard process, full of doubt and questioning.

The most difficult part of the book for me to write was the second chapter, in which I talk about my experience of stroke and (mis)diagnosis. Tom finds reading this chapter very upsetting, because he was so close to what was happening, but to be honest, in the writing, my own experience was not the difficult part. This chapter was hard to write because what it had to cover was so much more than myself: I had to talk about the situation of women who, just like I was initially, are diagnosed with somatic or functional disorders, and suffer on neurology wards under the vague assumption that their problems are all in their heads. I had actually had a stroke – and my problems were organic. Their illnesses affected their bodies too, but their problems were assumed to be completely psychosomatic. It would perhaps have been very easy for me to think, or to express the feeling, that, as someone with an ‘actual’, and very serious brain injury my problems as a patient were more pressing, more important than theirs. And if I was a different kind of person, I might perhaps have written about my outrage at having an ‘unreal’ category of illness imposed on me before it was happily discovered that my problems were in fact ‘real’ – originating in my brain and not my mind. But this is absolutely not how I felt – I simply saw us all as women: women disabled in different ways, women struggling differently in our various, awful situations on the neurology ward, but all women, and all patients. And I knew it was important to write the chapter from this position, precisely because functional disorders are much more poorly understood in general terms than strokes, and so infrequently written about.

The chapter was about me – it was about my raw and personal experience of the most awful event in my life – but it was about other women too: women who are misdiagnosed, women who receive vague diagnoses, women who are dismissed and unsupported because ‘nothing seems to be really wrong.’ And if the chapter was about the diagnosed, then it was also about the diagnoser. Because I was also going to have to write about the neurologist who, having seen a recent psychiatric diagnosis on my record, wrongly assumed that I’d ended up in hospital part-paralysed because of a mental health condition and work-related stress.

There have been times in the past eight years when I’ve wondered what might have happened had my stroke been diagnosed more quickly, and if I’d begun receiving treatment immediately (36 hours elapsed between my stroke and the MRI scan which revealed the black hole in my brain). There have also been times when I’ve been rather angry. I’ve been angry as any woman with experience of a man who has made erroneous assumptions about her gender has been angry, and I’ve been angry in the very specific way of a disenfranchised female patient who has received an incorrect diagnosis from a powerful male doctor. But before I sat down to write the chapter I knew I had to let go of all vestiges of anger. Not only did I have to try to understand the neurologist’s position – the wrong assumptions he made about me – I knew I had to try to forgive him too. I had to be able to write the chapter from that position of forgiveness. He was a human being. He had made a mistake, to which he’d freely admitted. There was no point in my being self-righteous or angry about what had happened to me: indeed, I felt that to feel or to suggest residual anger in any way would be a distraction from the larger point I wanted the chapter to make about the treatment of women with functional neurological disorders.

So before I wrote the chapter I read a lot of writing by neurologists, I read a lot about strokes in younger people, and I read a lot about functional / somatic disorders and their diagnosis (much of which was very troubling). And then, when I sat down to write about the neurologist, I tried to regard our patient / doctor interactions as an exchange – an exchange in which I was making assumptions about him, just as he was making them about me. I also tried to understand, from his diagnostic and experiential perspective, exactly why he made the decisions that he did. I wrote that chapter with detached understanding and real forgiveness – and with no anger at all.

It actually felt fantastic to carefully think about and to finally write that chapter. I would say that I found its completion to be a definitive resolution of what could be legitimately be described as trauma, and I would heartily recommend writing about traumatic experiences as a very powerful way of sorting them out (seriously, give it a try).

When I’d finished the book, I thought I might send it to the neurologist, who I’d not seen or communicated with since my stroke. I was nervous about doing so – but I really wanted him to read that chapter. I wanted him to understand that I understood, and that, even as I acknowledged his error, or, if you will, the wrong that he had done me, I was able to see the bigger picture.

A couple of weeks ago I received a letter from the neurologist. I’m not going to tell you what was in this letter, but I will say that reading it was a very profound experience. Reading his letter, I finally understood something about forgiveness that has always previously eluded me. Like everyone, I’ve sat before a TV screen and seen injured people talk about forgiveness and only felt extraordinary anger on their behalf. But after reading the letter I think I understand more fully why those people are, in fact, not angry, why they are able to see the person who wronged them simply as an erring human, and why they might be able to forgo enmity in favour of common humanity. Because I wrote that chapter carefully and thoughtfully – from a position of forgiveness and understanding – I’ve been able to have a meaningful exchange with the man who misdiagnosed my stroke: an exchange of the kind which few patients and doctors will ever have – much less those whose relationship is defined by a serious diagnostic error. His fault was serious, and it had a serious effect on me, but it was important for me to understand – and for him to know I understood – that his error had been purely human. It’s hard to put the strengthening and restorative experience of reading that letter into words. But it’s an experience I won’t forget.

67 thoughts on “to err is human

  1. Thank you for sharing this. In reading Handywoman, I appreciated the thoughtfulness of that particular chapter in so many ways, and I imagined how much it took to be able to come to a place where you could write it. In the same way, I appreciate this reflection on what it was like to write that chapter and share it with your neurologist.

    Liked by 1 person

  2. Of course it was all in your head. Quite literally. Because your head is part of your body.
    I’m very glad to learn that your neurologist read that chapter and that you were able to exchange some thoughts with him. When I read it myself, I thought he had been especially honest in admitting his mistake publicly to his students as soon as he realized it, and that turning his error into a teachable moment was a good step taken to prevent further such misdiagnoses.
    Thank you for this most excellent book, and also for sharing your misgivings as a writer. As someone who is struggling to get an albatross out of my house, it is reassuring to see that people who apparently are much better than I am at getting several of them out over the years also struggle.

    Like

  3. I have just finished reading Handywoman
    and this book resonates with me in so
    many ways -both as a recently retired academic who
    has just rediscovered her love of knitting
    and stitching and
    as someone who (long ago) coped with the
    outcome of a medical misdiagnosis. Your discussion
    of creativity and of the experiencing body
    is so powerful and thought provoking. If I
    were still teaching medical sociology I would
    make this compulsory reading for all my
    students. And above all the book is so beautifully
    written. Thank you

    Liked by 1 person

  4. I think the reason why we all struggle initially with forgiveness is because we believe there is a “therefore” attached to it. Society expects us to say: I’ve forgiven the business partner who embezzled my money, the ‘friend’ who gossiped about me, etc, therefore I’m going back to resuming the former relationship with them. It is this expectation that creates justifiable anger, because of course our mind and heart revolt against being ok with someone who has wronged us! And every time we remember the incident, the same negative emotions and stress hormones flood our bodies, magnifying the wrong.

    However, I’ve realised that this “therefore” is wrong. Forgiveness is has nothing to do with the person who wronged us, and everything to do with oneself. I’ve found it is an act of pure self love, of getting to the stage where I can remember the incident objectively, without being flooded by negative emotions. How one gets to that stage, I suppose, depends on the individual – therapy, meditation, prayer, punching pillows, interacting with the person who wronged us, an apology – various permutations and combinations of all these. And THEN, as a calm, objective, person, decide whether I want to keep them in my life or not.

    It also struck me, as I was writing this response, that I remember the period of my life when you had your stroke so precisely! I had travelled to a far away city, and I remember lying in my hotel bed, severely jetlagged, and feeling a bit frustrated because there was no further news of your Manu pattern. Isn’t it weird and wonderful how the internet has allowed us to ‘connect’ — and I use the word in the shallowest way possible, since you and I will probably never be more than electrons on a screen to each other!

    So that also means I’ve been reading your blog for over eight years now, sometimes agreeing, sometimes disagreeing, with you viewpoint, but always deeply appreciative of the way you craft (har har) your words and knitting. I wish you many more years of successful crafting!

    Like

  5. I must read your book. I see your story through two different lenses. I am a retired female physician who often dealt with women whose symptoms were minimized or misdiagnosed by male doctors. I am also a patient with lupus. Despite numerous signs and symptoms, my diagnosis was delayed as I was seen by male specialists who first saw me as a black female mother, a person unable to recognize the presence of illness in my own body. I am a realist, not bitter, but also not hopeful for better male doctors in the current environment in America. I knit for sanity and patience. All the best, brave woman.

    Like

  6. Kate, I was very impressed when I read your book with your very mature and charitable view of your doctor. I am so glad that you were able to reach out to the doctor and he replied to you. So much healing! So much more peace in the world!

    Liked by 2 people

  7. That chapter in the book is incredibly hard to read. In fact, I had to pause after that chapter, and I haven’t yet picked the book back up (but I will soon!). I just felt so angry for you, and for all women who are so easily dismissed by men. It’s so current with what our society is going through (my experience is specifically in the US, but I’m sure it’s everywhere). I’ve really loved reading what you wrote here, and I’m going to pick the book up and try rereading that chapter with this other perspective. Thank you so much for sharing these experiences with all of us. <3

    Liked by 1 person

  8. Medical professionals are often blinded by prejudice. I was told by a nurse that if a thin person has a stroke it’s because of a bad luck congenital condition, but if a fat person has a stroke it’s their fault and caused by lifestyle. If you give that even a moment of thought, it’s clearly nonsense, because congenital mishaps don’t discriminate according to weight, and they’ll be spread randomly through the population regardless of other factors. But that’s what she believed, and I’ll bet it affects the way she treats patients, and gets in the way of accurate diagnosis and appropriate treatment. Was talking to a workmate who is very fit and naturally thin, but has a strong family history of strokes, and he’s pretty much resigned to not being diagnosed with a whole lot of conditions, because the doctors will see his body type and wrongly rule out a whole lot of conditions, based completely on inaccurate cultural beliefs.

    Like

  9. Kate,

    My mother had 8 brain tumors over the span of 25 years, all benign. She was living in London for tumor #7. Her new tumors made themselves known through seizures and aphasia. So she was positive she had another one when she saw her London doctor. But since her husband had recently died, the doctor decided she was hysterical and put her in the psychiatric hospital. A friend helped her to escape and scheduled her a flight to the Mayo Clinic in Minnesota, where my grandmother and a surgical team awaited her arrival. She was so aphasia by the time she left London that her friend pinned a note to her coat explaining who she was, what was wrong with her, and where she was going. Her surgery was successful, she recovered well, and returned to London. No one doubted her when she became sympathetic with tumor #8.

    T

    Like

  10. I haven’t read your book but I am not sure I am ready to because at the age of 38 I was diagnosed with pancreatic cancer; 7 years later I can assure you the Hand of God was at the ready. Although a CAT scan and MRI proved it to be cancer, I underwent surgery two months later. It was benign! I slept with Psalms 103 on my belly and a prayer cloth in my pajamas. I am 45 and fully recovered after losing 60% of my pancreas; I got to keep my spleen and am not diabetic. God is good, all the time.

    Like

  11. Thank you so much for writing both the book and this.
    Misdiagnoses and vague diagnoses and even no diagnoses at all are a part of medicine, but they do have a hugely painful impact on lives.
    My completely non-complaining mother was having serious pains in her left shoulder and arm. She went to an orthopaedic specialist and was told, with no tests, that she should expect to feel some pain at her age.
    She was also having problems with digestion and the gastroenterologist said it was due to age and diet.
    In both instances it was problems from metastatic cancer that was diagnosed a couple of months later, by a doctor who saw her when she was having a checkup and insisted on getting to the bottom of the problem.
    Mum never expressed anger over the initial misdiagnoses. She focused her energies on being as well as she could be and lived another three years – that were mostly good years.

    Liked by 1 person

    1. I am compelled to comment, something I rarely do. My mom is going through this same experience. I am terribly angry, and she is quite resigned. I amyrying to let go, to be at peace that everyone is just doing their best, with what they have to work with. Still difficult….

      Liked by 1 person

  12. Today, the english words are eluding my fingers on the keyboard. In German I would say “Hach, Kate”, which might be translated “oh, Kate” in a very very positive and affectionate tone.

    Liked by 1 person

  13. That left me breathless and one of the most extraordinary things I have ever read. To be able to communicate with the original doctor is priceless, for both of you. Like others i will say………WOW and thank you .

    Like

  14. In 2010 I thought I had a bad case of food poisoning. The E.R. I went to worked on a protocol based on symptoms and test results. MY WBCs were off the charts so I was given antibiotics. I was dehydrated and was given saline plus morphine for the intense pain and gravol for the nausea. It took 10 hours for a diagnosis and that was only because my appendix actually burst. The hospital protocol, especially the antibiotics, made my healing so much faster because it was started immediately. Another nearby hospital wouldn’t start antibiotics until the diagnosis was made. Their patients had poorer results. It may cost money, but if a patient presents with certain symptoms here, certain tests have to be run…period. The outcomes are worth the effort. If anything, the NHS should be setting standard protocols for tests to be run in situations like yours so there is no 36 hour wait. Forgiveness is important, so is learning from mistakes so it never happens again.

    Liked by 1 person

  15. You continue to make miracles of a kind. Blessings. I think I wil print out “to err is human”, slipping it in my copy of Handywoman.
    Thank you so much for this.

    Liked by 1 person

  16. Thank you for sharing your incite on your neurologist. I had a gynecologist who failed to stage me for cancer, having promised to do so. It cost me 6 grueling chemotherapies, an additional major surgery, the need to look over my shoulder for the rest of my life, and oh yes no hair
    anywhere on my body for 7 months.
    I think you have shown me a way from the resentment I have felt for so long.
    It’s so important to me to hear someone advocate for women in the medical milieu.
    I am sorry it happened to both of us, but appreciate knowing I was not the only one, and being
    gently shown a choice.

    Like

  17. Kate, the clarity you achieve in describing what it is to have a massive change in physiology and personal perspective has been a great gift to me. Years ago, my mother had a severe illness that she eventually traced to a massive allergic reaction to an immunization. During the many months she was ill (in the early sixties), she was treated with the “uppers and downers” then available for psychiatric disorders. Of course, they did nothing for the underlying problem — and she became addicted to one of the medications, which prolonged her recovery time. Reading your account of your own experience has brought me new understanding of what our family went through and the emotional damage my mother carried ever after. Your clear voice not only makes way for more alert approaches to treatment in future, but it also vindicates women like my mother who were not adequately listened to when they most needed help. Thank you!

    Liked by 1 person

  18. I read this chapter in your book just last night and I was actually not struck with anger at the doctor – he took data and arrived at a conclusion. As a scientist, I can relate to that. And not to say that it didn’t at least make me roll my eyes, but as you say, to err is human. I can relate to that, too. However, I was most struck with anger at the nursing staff. Regardless of why, you were still disabled and required help to perform basic human functions. Your diagnosis should have had no impact on the quality of care you or any of the other women on that ward received! “All in your head” or not, without nurturing recovery becomes more difficult for anyone in any situation. I commend you for your ability to forgive. I will also say that I am reading your book, but I find a lot of it very…unsettling. I think I relate to many of the things you have written and I hope that once I am finished I will have the courage to write down my impressions and send them to you. And even if I don’t, I hope that I find the confrontation and writing down cathartic in itself.

    Like

  19. I’m so glad you had this experience all the way from so thoughtfully writing the chapter to receiving the letter from the neurologist. It was a profound experience that you enabled by your generous actions.

    Like

  20. ‘forego enmity in favour of common humanity’ – what an amazing insight. So much to think about here. Thank you for pursuing your thoughts and feelings and communicating them so honestly in this post and your wonderful book.

    Like

  21. I just ordered 2 copies for KDD. Perfect uplifting read for over the Christmas period. Specifically the 12 days of Christmas.

    Like

  22. I can’t imagine what it was like to be told it’s all in ur head. We like to think women have come so far. Ur experience is like something from the 1950s. Ur lucky an MRI was ordered – and that the MRI machine exists at all!!! I’ve been following u for a while on Instagram and sensed u had had a medical issue. Thank u so much for sharing ur story. Especially the part about forgiveness! U r truly awesome❤️❤️❤️

    Like

  23. I have followed you for years. I commented years ago how your recovery has helped me recover from sepsis, and my 2 months in a coma, all the while one doctor trying to tell my husband there was no chance of recovery and to take me off life support. What I didn’t say was that you are aware at times of people and their words said around you evenin a coma. I heard him say this to nurses, repeatedly and could do nothing other than prepare for death. It took me years to come to terms with that. It really wasn’t his fault. He truly thought I would be better off dead. I forgave him, moved on I thought, but still today I wonder if others have been taken off life support while they could understand what was going on. The doctor lost his license to practice due to drug abuse. Now, this may sound strange, but I feel pity for him, and hope he does recover. Thank you for giving me a role model in my recovery as I read your blog and your recovery.

    Liked by 3 people

  24. Thank you for this. Here in the US, every time I mention the doctor telling me “no, it’s not a stroke”, the first thing they ask is “did you sue?”. When I reply “no”, the reactions are typically incredulous.
    I have let go of much of the anger, and this post makes me realize that I need to let go of the rest of it.

    Liked by 1 person

  25. I am reading your book now and what you have written here. I am moved by how authentic and graceful you are in the world. i love the thorough research you did and how it moved you in your forgiveness. Your writings add to my belief that forgiveness is a true path of courage, heart and soul. Thank you for all the heart you share with the world.

    Like

  26. Thank you for sharing, Kate. I just finished your book on Monday. In reading that chapter, I was entranced by the way you wrote about the doctor using his misdiagnosis to teach others not to do the same thing. It never occurred to me what forgiveness it took to write the chapter. It seems like you’re saying that you intuited that intellectual honesty requires forgiveness. It makes me wonder how much our righteous anger for other issues, however justified, gets in the way of getting justice.

    Liked by 1 person

  27. You are an amazing, strong woman! Forgiveness is huge, it does not come easy for most people but to not forgive holds something deep & hurtful inside of us. I try to forgive but sometimes it takes me a lot of time & thought before it happens. You are an inspiration to so many! Thank you for always sharing your thoughts & of course, the love of knitting!

    Like

  28. Such a thoughtful and lovely explanation of a complex situation. I’m on the last chapter of the book, which is such a gorgeous piece of writing — raw, humorous, eloquent — and I continue to be amazed by your beautiful mind. Thank you for sharing it with us.

    Like

  29. Well put. Many of us have been on both sides of this situation. No-one wants to make a mistake, particularly one that could have such a detrimental effect on another person. Accepting the blame takes courage. Forgiving the mistake takes courage. Sadly, this error in judgment was at your expense, however the doctor will have learned from his mistake and will take this knowledge forward and share the situation with others. Other women will be helped as a result.
    Kate, your pragmatic approach to stroke recovery is so inspiring and a valuable lesson to anyone with a challenge. There is so much to be learned from your book. I know I will be re-reading it, and, recommending it to anyone who has faced a particularly difficult challenge in their life. Thank you.

    Like

  30. I have not yet read your book…I bought it as a Christmas present to myself…but I would like to say, Kate, that I’m sorry for what you went thru, but it seems the saying “what doesn’t kill you, makes you stronger” certainly applies to you. There should be more people with your strength and your ability to forgive in this world.

    Like

  31. Your post is timely. I wont go into my situation as I have already written to you about how powerful your book was to me. Anger as we know is one of the stages we go through in life, but I just wanted to remind myself all that good comes of the feelings we experience when we feeling judged as women. In the 1960’s and 1970′ s there were a number of mainly groups of women who created some of the charities that are now well known in the disability field, because they had trauma in their families. Each time we document these experiences in a non judgemental way we can add to the dialogue. I went onto work with the GP and paediatricians with whom I had such a difficult relationship and together through appropriate channels we built several organisations that made a difference. I did try to see it from their point of view, but we were still in the era when “the doctor knew best” and in my darkest days, I felt undervalued. One day I was a professional woman and the next a neurotic woman worried about her baby. Knowledge is empowering and when you have a diagnosis, it makes all the difference. Yesterday i travelled from my home in the Midlands to see the Shrouds of the Somme at the Olympic Park. I have not travelled alone since having the bleed on the brain. I was doing very well until travelling the underground. But because I have finally had a diagnosis which has affected among other things my short term memory and balance, I was able to ask staff for help. And that felt empowering, rather disabling. So thank you again for your insight. And to all the others who have commented to.

    Liked by 1 person

  32. Breath taking words. I have bought your book to give to my sister who experienced a troubling misdiagnosis by a doctor and nurse practitioner who thought she was having a psychotic episode when in fact she had a brain injury that took away her ability to speak. Kate you are an inspiration. Thank you for your time and words about forgiveness. This is what we need in the world today

    Like

  33. I am passed the midway point of Handywoman and just when I thought it couldn’t get any better, you write this… In a world that has increasingly become full of people feeling unjustly wronged and demanding restitution, it’s refreshing to “know” a person like you (through your work). Refusing to become a victim through forgiveness must be awfully liberating. You’re a heroine, Kate! Thank you for writing this post.

    Like

  34. HI Kate,

    I am a doctor, working in Ireland. I am so very sorry about what happened to you…and so heartened by your response, which is a testament to your wisdom, your generosity and your profound humanity. I saw a situation like this happen early in my career…thankfully for myself I was the doctor who decided to do the brain scan on the patient and not assume he had a sinus infection…but I could have decided not to do it. This is the price we pay for the flexible, adaptable brains we have. We don’t make decisions in the same way every time. We are influenced by so many constantly shifting variables. That experience taught me to always consider the worst case scenario first and work down from there. Certainly in Ireland, I could imagine you would have been investigated immediately. we recently sent a lady in to casualty with very obviously somatic symptoms and a history of anorexia. She received a brain scan immediately despite the very obvious evidence that the symptoms were not due to a serious neurological abnormality. I feel that the NHS is so cost-driven that they fail to see the wood for the trees…that just because a scan is expensive, it is never worth more than the chance to save a life or catch an unlikely diagnosis that might change a person’s health forever. I admire you utterly and I adore your work. I’m wearing my lovely red Rochoish as I write this! I await your latest body of work with bated breath. All the best Kate xx

    Liked by 2 people

  35. I am thoroughly enjoying reading Handywoman for its content, eloquent language, your thoughtfulness and generosity in sharing such a difficult personal experience. I acknowledge how much personal work you must have done to enable the writing of the book.
    Now after reading this I’m almost speechless. I would like to express my gratitude to you for sharing such a powerful message and giving the experience of such female empowerment a voice.
    So important for all of us, regardless of gender or profession, to remember our humanity and stay open to dialogues that can heal such traumas. Thank you!

    Liked by 2 people

  36. When i read that chapter, i really admired how you had written it, putting aside your anger. But i also appreciated it as a reader, beacuse it allowed you to give us insight into the bigger picture, to the experiences of the other women and to your interactions with the doctor (which were more interesting than insightful than anger would have been (though that would also have been understandable). What you say here about forgivenss and acceptance of error is a great addition to that chapter. i am glad he got to read that chapter and that you have been in touch with him.

    I also really appreciated how balanced you were baout your ‘organic’ disorder and some of the other women’s somatic disorders (not a term i was familiar with). It was so good and interesting that you were able to accept that while their illness might have had a different cause, they had the same/ similar physiscal issues.

    It may have been the hardest chapter to write, but for a healthy person (which i fortunately am) it gave me a lot of insight into other people’s experiences.

    Finally, on a completely different point, while you don’t make a big deal of it in the book, i can’t believe (well of course i can) some of the things people said/say to you, how rude they were and how they were/are happy to invade your privacy with all sorts of inappropriate questions.

    Like

  37. I haven’t read your book but this resonates with me.
    I don’t know why medics are so reluctant to look at a physical cause for problems when confronted by something they may not totally understand. My husband died nearly 20 years ago from a brain tumour. He had been ill for at least 12 years, suffering from loss of conciousness (put down to low blood pressure but in fact were petit mal fits), terrible headaches, change in personailty, loss of fine motor control (he’d been a wonderful artist but could not draw – could not even operate the washing machine) and terrible depression. We were sent for relationship counselling and he was referred to a psychiatrist. I tried time and time again to get a thorough investigation made of his symptoms but failed – succeeding only in being admitted to a psych hospital myself with severe depression and suspected to have schizophrenia……..
    His tumour was finally diagnosed when he ‘coned out’ and then he died 5 weeks later. The Brain Tumour Charity has funded research which may speed up diagnosis….. Nobody ever apologised. My children were 15 and 6 when he died.
    I work in medical research (have done for almost 40 years) so understand how this happened but still feel we were poorly served.

    Liked by 1 person

    1. Oh this experience moved me to tears. Not sure how you got through that time. I never knew what the word ‘coned’ meant until my brother went into a coma as a result of terrible head injuries in a car accident…..he didn’t live. X

      Like

  38. This is beautiful. I’m now utterly fascinated to read your book – I’ve previously (2010) been diagnosed
    with a TIA which was later rediagnosed as
    stress-related migraine causing paralysis.
    I’m currently absent from work with a
    different variant of the same mysterious
    migraine, this time presenting as fits.
    The somatic side of things is where my
    current research is leading me, in particular
    to AND (Associative Neurological Disorder).
    I must now locate a copy of your book and
    READ! 😊 thank you for sharing your life
    experiences with other women who are
    experiencing similar things xx

    Like

  39. Wow from me too! I’m hoping I can afford to order this book – South African currency extremely poor at the moment – and I’m thinking of a whole bunch of people whom I would like to share it with.
    Thank you Kate. Just this post you wrote is WOW, so I’m in no doubt that the book is even more so.
    XX

    Like

  40. Reading your chapter in your book, and now reading this… struck me to my core and I find myself being very moved by your words. (Being almost misdiagnosed myself while having a potential deadly affliction..I can relate a little to your feelings about that situation.. not that I think I can relate to what happened to you with the stroke and the impact, I think that’s a whole different ball game).

    How wonderful you have sent it to that doctor and that he took the time and responded the way he did. I can see that writing this book must have had quite the effect on you, and your loved ones, and maybe helped in some way in your grief processes but also in acceptance.

    Like

  41. Oh wow Kate…. I have been reading your amazing book, a little every single night as I relax into bed, and am almost at the end, only a few precious pages left. It has accompanied me daily over the weeks since I received it, and I have been moved over and over again, whether from the touching childhood memories you describe, and your incredible parents, to the whole apprenticeship of a new life in a different body and with a badly injured brain. I am a healthy, active knitter in her early sixties who walks miles to work everyday, and although I can have no real idea of what you have been through, there are so many things I can relate to… from taking my own abilities for granted, occasional impatience at being held back by slower walkers…to the utter thrill of picking up stranded colourwork after a summer break, getting my two (able) hands working in synergy (and this happened just before reading that chapter in the book!)… so many parts of the book either rang totally true, or made me stop in my tracks and think.
    And now, reading your post about the neurologist just brought tears to my eyes yet again.
    I cannot thank you enough, for the enormous work – on yourself, on background reading, on the actual prose, which is such a joy to read – behind the book, but for your inspiration to us all, for your relentless work and the wonderful patterns and yarns you tirelessly produce. It was such an honour to meet you in person at EYF last March, thank you for being there and giving that extraodinary talk.
    I wish you all the very best, to you and your wonderful husband Tom (whose photos I so admire!),
    Warmest greeetings from Switzerland
    Isabelle

    Like

  42. Ten years ago my son was shot in the spine while serving his country in Iraq. When we visited him in the hospital for the first time I gave him a notebook and I wrote on the first page ‘what I did in the war’. My son was no academic and no great writer but over the following few years he continued to write down his thoughts and his memories. He does not suffer from PTSD (which I put down to his continuing perseverance in expressing his feelings in writing) and with the aid of orthotic leg and feet supports he is able to walk.. something he was told wouldn’t happen. I am so pleased that you were also able to find your way through your difficulties by writing (and knitting). I would urge everyone to put pen to paper no matter what your academic abilities are. It does seem to help.. as does the knitting.. perhaps what is happening in the brain is similar in both activities, I certainly seem to have a thoughtful narrative going on in mine while my hands are knitting and purling away!

    Liked by 1 person

  43. Gosh Kate. What a powerful message. I have wasted time in the past feeling aggrieved and bearing a grudge and the only person damaged by it was me. You and your book are inspirational. Brava!

    Liked by 1 person

  44. Wow! So powerful.
    I am not a doctor, but work in the medical area and not in your country. I know that most doctors are deeply caring and have a huge fear of misdiagnosis; they sweat and stress and don’t sleep at night. They work incredibly long hours and have a huge workload and often have to justify extra diagnostic tests to non-clinical staff. When mistakes are made, (and that is inevitable) it is more often the partners/parents/children that are the angry ones, not the patient.
    You are a remarkable woman, Kate. Thank you for sharing this.

    Liked by 1 person

  45. Thank you. I believe that you showed profound respect for both yourself and that doctor. You had an actual communication with him and allowed you both to ‘speak’ out. It is a flaw in our system that neither doctors nor patients are followed through to the end. All of us need to see the consequences of our actions, to have the sharing.

    Liked by 1 person

  46. You are endlessly inspiring! that experience of forgiveness – both ways – is so profound and enabling and indeed humbling I really want to thank you for people like me who need to reach out and offer and accept forgiveness and be prepared to go forward released from guilt or blame. Thank you.

    Like

comment here

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.