I have been thinking a lot this week about what is invisible. If you looked at me now, what you would see was myself, looking (I hope) pretty much as I did before all this happened, save for a stick; a wonky leg and some sadly uncoordinating footwear. What you perhaps wouldn’t be aware of are the host of less visible and tricky-to-deal-with symptoms that mean that the stroke and its effects are always present to me. I am troubled by dizziness and vertigo pretty much constantly; my body feels uncomfortable most of the time; it takes tremendous effort and concentration simply to remain upright; and performing small everyday tasks induces a fatigue that is crippling and all-consuming. I think about these things a lot not just because they are really annoying but because I am, here in the hospital, surrounded by people who all carry about their own very different invisible things. I encounter a cheery person in a wheelchair, but what I don’t see is her double vision, her loss of spatial awareness, the trouble she has finding words, or the daily difficulties she faces dealing with the loss of bowel and bladder control. And the problem is compounded by the fact that all these symptoms and feelings are not just invisible, but often seem beyond language. In the attempt to describe and get at what’s going on inside — to make the invisible visible — we reach for different kinds of tropes and figures. I’ve recently become very aware of some of these. For example, I notice that I roll out my own stock set of similes when I am asked to describe how I feel: in the days before the stroke I felt like a coiled spring; the stroke itself was like a gun going off in my head; the effort of my damaged brain trying to “find” an inaccessible muscle feels as though I’m on a roller coaster. I first used these figures entirely unconsciously, but then started to realise that that they all relate to machines and contrivances. In their reference to mechanical volition, these tropes are perhaps a way of suggesting how inhuman and dissociating I find my recent experiences — how much the stroke is not me.

Through talking to other people with brain injuries, I have noticed just how many metaphors describing the invisible parts of their experience involve dissociation or separation: dividing one’s sense of essential you-ness from what is emphatically not you. For example, I have a pal at the exercise class who, when he is having a bad day, mentions the misbehaving “beasties” in his head. I had a good chat with my friend about his “beasties” and what his account first put me in mind of was an episode of Spongebob Squarepants where evil Plankton, in an effort to steal the prized Krabby Patty recipe, takes control of Spongebob’s brain. Much hilarity from Spongebob’s altered behaviour ensues, but the recipe remains elusive.

I then also remembered The Numskulls, who I was intrigued and not a little troubled by when I was a kid. Beezer readers will recall that the Numskulls were tiny folk who inhabited the head of “our man”, controlling all his neurological functions and behaviour. Failures in communication between “our man” and his numskulls were the source of much of the surreal mild “humour” that characterised that comic in the late ’70s and early ’80s. . .

I think that what bothered me about the Numskulls was much same thing that terrified me about the original version of the Invasion of the Body Snatchers when I first saw it as a child: the loss of free will and one’s identity being subsumed by forces that are not you, but are nonetheless inside your head. This is very much how my friend with the misbehaving “beasties” feels: it is as if his head is full of malicious presences who are willfully impeding his speech and his cognition. The trope of being colonised does not in any way capture his interior experience, but it is nonetheless a very powerful way of expressing it. I think that this feeling of one’s identity being invaded, usurped, or controlled is probably the most hideous and frightening of the invisible effects of brain injury (at least it seems so from where I’m standing). To me, it raises very tricky philosophical as well as neurological questions: can the injured brain become integral to one’s sense of self? Is there a “new” you post injury, or is recovery really about restoring the “old” you? Are there ways (or perhaps metaphors) of dealing with those invisible feelings of dissociation and the loss of control that are better or more helpful than others?


(beware the beanpods!)

For a few days immediately following the stroke, I experienced things in much the same way as my friend does now: as if I were being invaded or controlled by an alien thing. Though I was always fully aware of what was going on (and was often very scared of it) I felt as if my mind had been emptied out or blanked. I couldn’t concentrate on anything at all — even looking at a fashion magazine was impossibly stressful — and it seemed as if there were something inside me blocking the movement of my thoughts and ideas. I was also a little prone to what the neuropsychologists call “inappropriate behaviour” — in my case laughing uproriously at things that weren’t funny. It may sound odd, but at the time it really helped me to think about these things in figurative terms as possession or colonisation. Separating the invisible symptoms from my own sense of self, and describing them through metaphor as being caused by an exterior force or agency, meant that I could hold on to the idea of what my identity should look like. What is really interesting to me, however, is that, as time has gone on my attitude to my own numskulls (or what I have described here as monkeys) has radically changed. It may sound daft, but I think that figuratively visualising my own brain-monkeys has helped me to adjust to the stroke as a process to work with rather than a thing to be fought against. I hesitate to tell you this, but I regard the monkeys as essentially benign presences. I often envisage them and sometimes even address them (though, you will be glad to hear, not out loud). I imagine them toiling along with me during my exercises and working away while I rest and sleep, rerouting my damaged neural pathways. They are a little unpredictable, and perhaps a bit confused right now, but I think that, fundamentally, they are really smart monkeys, and that they will figure it all out eventually.

I have only just started to think about these issues: I am sure they are discussed in the writing of Oliver Sacks and that of Jill Bolte Taylor who I have yet to read (I am really looking forward to Bolte Taylor, but the experience of stroke is so raw to me right now that I confess I am a little afraid of reading about other people actually having one). I’ve also been put in mind of Elaine Scarry’s groundbreaking Body in Pain which I read a long time ago and which (to my mind) knocks the socks off anything written by Susan Sontag on the topic of the body and figurative language. I’m always grateful for your recommendations, and if you know of good books and essays to read about describing mental or bodily experience through metaphor, please do share them and I shall chase them up as I explore this topic further.

In other news:
I am getting out and going home. Hurrah! More on this later!

80 thoughts on “invisible metaphors

  1. I often thought about people’s invisible experiences during a period when I was tangling with anxiety. I’d ride the subway into Manhattan from the poor Brooklyn neighborhood where I was living and think about how much work each of us had to do to get ourselves on the subway that day – for me, working through the morning panics; for the woman opposite me, maybe trouble in her family, sadness, money troubles, who knows. I thought about how we were all secretly super heroes, quietly managing our issues, quietly being so much stronger than what showed as we sat in our seats. That reflection in that setting was one of the real gifts of that period to me. Most everyone has had some periods of quiet heroism, once they get old enough.

    Thanks so much for sharing your thoughts with us.

    Erika

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  2. dear kate, thank you for this personal and insightful post. my aunt struggled with MS, transgeminal neuralgia and fibromyalgia for many years of her life. she would sometimes try to explain to me the struggle that she went through to keep her “demons” under control. she was very willful and strong, and always saw the good. i find your description of the relationship you have with your “monkeys” incredibly positive and healing. i look forward to reading your posts from home. home is where we all should be and i’m glad you will soon be there. wishing you peace and joy, dorina.

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  3. Thank you for sharing this with us, I’ve been reading all the way – and praying for you (hope you don’t mind).

    I can identify with the dissociative stuff, I feel like there is me, then there’s the ME and fibromyalgia and other things, and we’re often battling against one another, because I want to do things and it stops me. It can all feel rather weird sometimes.

    Wishing you all the best and many many spoons (might make more sense after reading the Spoon theory)

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  4. I’m hoping that by the time you read this you will be comfortably at home with Tom and Jesus.

    I’ve read this post several times and been thinking about “youness”. Here’s a subjective offer. When I was diagnosed with chronic, but manageable, thyroid disease some years ago, I was outraged that my body could let me down in such a way. In fact the symptoms are easily managed if you take the right medication (poor Mary Webb who suffered from the same problem was less lucky). It took me many years to accept that the illness was part of who I am; it was me. This in turn has made it easier to accept the gentle and inevitable process of ageing. So carry on working with your monkeys – it feels like the right way to go.

    Will be thinking of you eating eggs over Easter.

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  5. I found your blog just after yor stroke. I loved it!! Today I was researching and found you again :-)
    I am glad you are writing. I pray for your days to become easier with time .
    A knitting sister on the Coast of Maine, USA
    Mary

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  6. Hello Kate

    So happy you are able to go home. What a boost for you all.

    And may the Wise Monkey be peaceful and calm!

    My very best to you.

    Lydia

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  7. I’m happy to read that you are going home.

    Your posts made me think more than any books I’ve read this month – and I got through many supposedly thought-provoking books as a student signed up for a demanding semester. I’m not sure this is how you’d say it in English but what you are going through and the way you write about it strikes a very emotional chord with me.

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  8. I haven’t read the whole thing yet, it’s very, very meaty… and scientific, and you must overlook the author’s eccentricity about his spirituality, but I think the book “Evolve Your Brain” by Joe Dispenza is a winner. He is one of the founding creaters of documentary film “What The Bleep Do We Know” (which I also strongly suggest viewing), and there’s an elongated version of this film called “Down The Rabbit Hole”. All of these are science about gaining control over one’s neurological mayhem.

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  9. Hi Kate, I have also been thinking about metaphors and illness, we seem to be waging wars against germs, fighting infection, anything to disassociate ourselves from this “thing”, illness.

    My M.E. is a beast, that frequently threatens to devour me, and yet I own it, it is part of me, and it is only me (when it really comes down to it) that can lessen it’s effects. I’m learning to turn the beast into more of a slightly scary Jim Henson character, who I can befriend. Sounds like you’ve done the same with your monkeys. We are and will be changed as the effects of our illness recede, going though all of this will change us, but I don’t think that’s a bad thing, we need to grow. Of course, I would’t wish illness on anyone. I often feel the frustration of having a hidden illness, and it has also made me aware of the possibility of this in others.

    Really glad you’re going home. Home is good. Thanks for the thoughtful and thought provoking post, and thanks to all the other people who have shared their experiences in their comments. I’ve found it all very moving, and will be looking up the reading matter too.

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  10. I just love reading your writing. You describe your situation with such hope and heroism that it makes me often very ashamed at how much I complain about the very small things that annoy me.

    ((hugs))!

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  11. I’m so very, very glad you are going home. Chin up, and you can do it just like you have done the awful stuff, so far. Love and best wishes,
    Linda

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  12. the best work i’ve seen on this is a soc classic, erving goffman on Stigma. very, very interesting.
    i am happy you’re going home. this is real news.
    xxx

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  13. My friend Kate (ha! it’s true though) just turned me on to your blog. I had a stroke two years ago, when I was 31. I’m reading your blog and crying (which I do a lot more now that I’ve had my stroke) and remembering. It’s so hard to recover, but each day it’s true, you can do a little something more. People won’t notice what it is that you can do, but you do notice. Thank you so much for sharing. Good luck with everything.

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  14. You know, I’d wager that visualizing what’s going on for you internally as a thing separate from yourself, in this case monkeys, and seeing those things as helpful and benevolent is good for the recovery work you have to do. Positive thinking and strong visualizations skills can be powerful healers.

    I’m glad you’re going home. :)

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  15. The thing that impresses me most about you, Kate, is that you aren’t a “wallower”. Instead of playing the sympathy card you continue to educate us in the questions and frustrations facing you daily.

    Because of your essays here I am able to be a better friend to my pal Nikki who had a stroke at age 35. Nikki is recovering at a good pace, but there are many “invisibles”. After today’s reading I better understand her frustrations and can respond in a thoughtful (and respectful) manner, instead of rushing in with what I think the right response should be.

    I know you’re looking for more literature, but I want you to know I’ll be the first in line here when your book on the subject comes out. That’s not an “if” by the way. Be well. I look forward to your posts in the future.

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  16. Hi, Kate–so glad you are going home soon! If addressing monkeys in your head works for you, then by all means do it and damn anyone who looks askance at the practice. I find all of Oliver Sacks’ books fascinating and he would probably be very interested in hearing your own experience–you should contact him.

    I second the recommendation of Temple Grandin–while she didn’t experience the “catastrophe and recovery” scenario, her experience of autism and her thoughts on the animal brain are always interesting to me. Animals in Translation is a great book.

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  17. A little off-track I know, but at 5.30am this morning I finished Grace Maxwell’s incredible book ‘The Restoration of Edwyn Collins’. An astonishingly beautiful and honest book from a different perspective. I was thinking of you throughout and was so grateful for the fact that your expereience has not impacted (it seems to an inexperienced bystander) on your eloquence.

    Thank you for such insight Kate, and do get well soon. x

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  18. So wonderful to hear that you’re heading home, Kate. As someone with an invisible chronic illness, I wanted to remind you that even positive transitions can be physically and mentally hard, so don’t be surprised if you have a bit of a temporary downturn once you’re out of the hospital.

    Books: I second the Oliver Sacks and Robert Sapolsky recommendations, they’re both wonderful.

    You might also find value in Temple Grandin’s work – she has Aspergers and has written extensively about what it’s like to have to learn to perform brain functions that are very foreign to her.

    I think you’d also enjoy the very wonderful, A Natural History Of The Senses by Diane Ackerman.

    Pain: The Science & Culture Of Why We Hurt by Marni Jackson is another enlightening and fascinating read.

    My wife recommends: The Spell of the Sensuous: Perception and Language by David Abram

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  19. Also, not read it myself, but the title sounds very relevant to your writing:

    Landscapes of the Mind: Worlds of Sense and Metaphor, by J. Douglas Porteous (1990)

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  20. Dear Kate, if you have access to JSTOR, how about:

    F. Elizabeth Hart, ‘Cognitive Linguistics: The Experiential Dynamic of Metaphor’,
    Mosaic, 28/1 (1995), 1-23.

    Juliet Mitchell, ‘Trauma, Recognition, and the Place of Language’, Diacritics, 28/4 (1998), pp. 121-133.

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  21. Thank you, that was such a thoughtful and thought-provoking post. I think it’s interesting that people are able to come up with so many pop-culture references for disassociation, it’s obviously a trope that resonates with a lot of people.

    So glad that you get to go home! Hope you have a joyful homecoming.

    Liz x

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  22. You might find Barbara Ehrenreich’s ‘Smile or Die – How Positive Thinking Fooled America and the World’ interesting. I haven’t read it – though I have seen her talking about it – and as a social commentator and immunologist who has had breast cancer she has an informed take. She is usually good value anyway – ‘Dancing in the Streets’ which I have read was a good read.

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  23. I wanted to recommend Jill Bolte Taylor book “My Stroke of Insight ” to you but it seems you know of it. It helped me understand the things that were going on and how to feel like I had a bit of control over them even if that control was just the knowledge of what was happening. Congrats on going home.

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  24. You are so courageous. I hope that should I ever be faced with a similar challenge that I will do so with similar grace, insight, and strength.

    Sharing your experience, emotions, and insights will be a blessing to those with similar brain injuries.

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  25. I so agree with you about Scarry’s book. I can think of none better. One book that examines interesting metaphors for the body in pain and in immobility is Jean-Dominique Bauby’s The Diving Bell and the Butterfly.

    Your posts are deeply moving an enlightening. I hope that you will write a book when you are ready.

    All best,
    Gigi

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  26. The old you? the new you? We all change and grow through out our lives and this change has been so radical for you and a complete shock to you and those around you. However, your capacity to embrace the changes that have been thrust upon you, to accept and be positive about these changes and to learn from – and teach others – about them come from the fundamental soul within you which will never change. And that is a blessing.

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  27. Hooray for home! It will be hard in some ways but so worth it. SOme of us in Sydney have a small thing to send you – I will hold it for now and hope that another address can be made available for posting.

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  28. Glad to hear you’re on your way home! It’s great news. And the Numskulls were such a blast from the past! I loved them – I don’t know what that says about me!

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  29. I’m so glad you will be going home. Hopefully you’ll heal ever faster there. Your articulation of the stroke and what yours brain is doing has been helpful to me to understand what my mother-in-law may have experienced years ago (she passed away from something entirely different). I noticed she had continual healing and progress. But I ache that you, she, or anyone, has to go through this ordeal.
    However, not only are you learning from this experience, but you are teaching us as well. As a scholar, you are offering even more knowledge and insight than you might imagine.

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  30. Dear Kate, thank you for the post.
    My daughter fell ill at the age of six with severe epilepsy and she wrote a poem very soon after she got ill about the disease. She – obviously using the words and the world that was familiar to her – says in the poem that there is something wrong with her brain, possibly it is a little bit of dirt stuck there. After seizure she is not orientated to the world around and her memory loss is sometimes vast for a while and she thought then that she was attacked by a witch who stirred things up in her memory. Some things are permanently lost but many things come back after some time.
    Since she got sick I have been more aware in people that is not visible, when people meet my girl they sometimes see a girl who is extremely tired, not “present” and they act accordingly, likewise, the people who see the happy young woman, are shocked when they see the other her after a seizure and find it hard to put the puzzle together.
    When she got sick for a long time I waited for the old her to return, obviously it has been a long wait and most likely that girl will never come back, I mean, it has been more than ten years and she has grown up ;-) As a mother I had to let her be born again, like she was, with her disease, and love her and the illness, like I love her with her other features.
    This became longer than I intended, but your post today just spoke to me. Like all of your writing. Thank you for keeping the blog. And all the best to you.

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  31. so wonderful that you get to go home! hope things continue to progress…Jill Bolte Taylor’s book sounds fascinating, I might have to check it out myself. Ironic to find about her from you–sometimes it is such a small world–since she works at the university where I studied (and is from the state that I’m from). Good luck as your recovery continues, and all the best to your monkeys too. :)

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  32. Your posts continue to fascinate me not only because they describe things I have never experienced, but also because of your tenacity and ability to look at your experience in a thoughtful way. I’m very glad to hear that you are progressing well and that you get to go home! Yay! :)

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  33. Hi Kate,

    great news on getting home!!!

    Your monkeys analogy makes a lot of sense. By not fighting them, but coercing them to work with you, you will be causing yourself and them less grief and therefore get to your ultimate goal faster. Realising how the body works when it is impaired in some way, makes one realise how mindblowing a healthy body is. How automatic immensely complex tasks can be. I wonder if your monkeys have always been there, but until recently they’ve been beavering away without your conscious awareness?

    I have 2 links for you to small online articles. The first is about becoming a parent to a child with a disability. I find that the analogy works well on gaining disability or just in describing the difference between “before” and “after”. (I personally think that there is no “old” you whether injured/not as we are constantly evolving, that even given a magic wand to be phsyically and emotionally recovered, you would still be different-which does not mean that again, injured/ill/healthy we don’t wistfully long for an old self) The article: http://www.our-kids.org/Archives/Holland.html

    The other article is about energy conserves and how much energy some seeminly tiny tasks can take from us. It’s known as the Spoon theory and is a very useful tool in describing or showing others what living with limited energy means. http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

    :) Sarah

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  34. I don’t know if this is the sort of recommendation you’re looking for, but I have found much help and comfort in Why Zebras Don’t Get Ulcers, by Robert Sapolsky. It’s specifically about the physiology of stress, but of course, that spans a broad set of reactions. I happened to read it right before my own long term physical set back and it was strangely comforting to have some idea of why these incomprehensible things were happening to me, once I had a diagnosis. I realize that your stroke was not caused by stress, but I still think it might be a helpful book, because it’s written with humor, insight, and a lot of science, and the combination is one that is easily accessible, and for me, gave a greater insight into the strengths and fragility of bodies, and how and why our bodies and brains (the brain is always separate from the body, isn’t it, even though they are of a whole) sometimes behave in a manner that seems at odds with everything.

    I hope things begin to seem more like you again soon. It’s a terrible and strange feeling to be alienated from your body, to experience pains and reactions that have nothing to do with who you are. My own illness was very different in type, but as you write, I remember so many of the same or at least very similar feelings. You are in my thoughts, and I hope that the monkeys, with their clever little fingers, commence getting things set right as quick as can be hoped.

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  35. I’m glad you are going home, yay!

    Have you read the book Awakenings by Oliver Sacks? It’s actually about Parkinsons’ but it used some really interesting metaphors to describe the experience of his patients.

    What I like is the way he focuses on the experience of the patient as something real in its’ own right, a kind of navigation through unfamiliar land, rather than just reeling off statistics (or imposing dry summaries from the perspective of a detached observer).

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  36. Great News that you are getting out of the hospital. I was going to send you something but everything in my thoughts that I could write sounded like ‘you have the facilities [i.e. hospital care, occupational therapies, exercises] to get better when I can’t’. I have cfs and the mind problems I have sound a little bit like what you have been dealing with but I now realise you have more to contend with. I wish you well on your recovery. I’ll be reading all that you write.

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  37. Hi Kate,
    As Tracey Ullman said at the end of her show to her studio staff “GO HOME!” (Maybe she’s there doing her thing still on youtube…I love her).

    On a more cerebral TV note, (I can’t knit and read a book at the same time or else I’d be smart like you) I watched a program on our Public Broadcasting System on Dolley Madison last week and thought of you. It was a fascinating portrait of this woman whom I knew nothing about.. Maybe you can view it…go to PBS.org, click on “videos,” go to “American Experience” and go through till you find the show on Dolley. Apparently she was a bit of a fashion plate, having enjoyed the material culture of the time(!) as she emerged from her Quaker roots.

    If it weren’t for you, I’d have not a clue as to what “material culture” is.

    Thanks and GO HOME! (And thank goodness it’s your leg not your arm, usually it’s the other way around). Blessings,

    Wendy

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  38. Hi Kate,
    I’ve always loved your posts and your more recent ones have been very touching and enlightening reading. My first interest in your writing was as a fiber enthusiast. However, your more recent posts have been of interest to me as a physical therapist who specialized in neurologic conditions, and as a mom of a son who experienced a mild closed head injury 4 years ago.

    When you wrote Oliver James in your post, were you thinking of Oliver Sacks? Sacks has written several pop books on neurology, my favorite being “The Man Who Mistook His Wife for a Hat”.

    Good home coming to you!

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  39. I think that your characterization of your neurological symptoms and difficulties as benign monkeys is a good thing. Earlier today I read this on Twitter: “RT @DalaiLama: Inner peace, the principal characteristic of happiness, and anger cannot coexist without undermining one another.” It would seem that as long as one were perceiving the neurological stuff as the enemy and therefore anger-producing, one could not attain any kind of real peace. Your benign monkey sound like a much more positive and happiness-compatible sort of perception.

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  40. If one was simply to read you, they would find no other evidence of a stroke than your direct expression of having had one. :-)

    I think the disassociation is a survival mechanism. As a migraineur, I often find myself inside my head trying to cordon off the pain with meditation or distraction. I refer to it, the migraine, as invaders or a railroad spike – very clearly things that do not belong inside a skull – and use “the migraines” instead of “my migraines”. But as much as migraines are a part of my life, to label them as anything other than foreign would be a surrender to them, like saying that I myself might as well be a migraine. And that simply won’t do. (What a horrible person I would be…)

    I had never thought about the disassociation of it before now and you’ve definitely stirred the pot for me. Thank you.

    And super YAY!!!!! for getting to go home!!

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  41. I am so happy that you are going home. I know that doesn’t mean that the rehab is over but things will feel more normal in your own home. Just think you won’t have to wait on your tea.

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  42. Hi Kate, I wonder if anyone has already suggested you the book: The Brain That Changes Itself, by Norman Doidge M.D. I haven’t read it myself but my husband did and was very engaged by it. He thought it was very interesting and refreshing to see the new directions into which neuroscience is developing. You may find it interesting, perhaps inspiring too. You can check Amazon for a description. All the best, Luciana

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  43. I’ve been lurking quite a while, reading *all* your posts. I am so happy that you’ll be going home!

    Although not exactly what you’re speaking of, one book that comes to mind is _The Curious Incident of the Dog in the Night-Time_, by Mark Haddon, written from the perspective of a boy with asperger syndrome. The descriptions of how images and colors and spaces besiege the boy’s senses and how he coped were quite vivid to me.

    I was once on anti-depressants, and after ceasing my dose I could only tell my doctor that every so often it felt like my mind “blinked.” Incredibly perturbing, but my monkeys sorted it out in due time :)

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  44. Just stopped by to read your latest post and was very moved by your honesty. Your selfless sharing will help another, thank you.

    Cheers dear lady.

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  45. Good to hear from you, and I am glad that you are going home! These are interesting thoughts on how injury changes identity – it is something that has been on my mind lately. Best wishes!

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  46. congrats on going home! i started reading your blog just a week ago, & as a fellow knitter & academic i find your writing very engaging. i too loved elaine scarry’s _body in pain_, but i haven’t read much more in that field either. you might look into lakoff & johnson’s _metaphors we live by_, which takes a classificatory approach to mental metaphors (looking at, for example, all our “up” metaphors and trying to figure out whether & why it’s significant that they mostly have to do with good things), but frankly i found it to be pretty speculative scholarship. it might be thought-provoking, though, and the sheer number of everyday metaphors that they compile is interesting to look at. you also might look at oliver sacks’ books (_the man who mistook his wide for a hat_, _anthropologist on mars_, etc), which are pop-science accounts of neurological weirdness, if you don’t already know them.

    best of luck with your recovery! i’m sure you’ll be hearing more from me in the future. :)

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  47. Doidge also sprang to my mind, as well as Haraway, who’s fascinating. Glad you’ve already read Scarry, she’s great!

    You are generous to share your thoughts and feelings about what you are experiencing; thank you, very much appreciated.

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  48. Kate, delighted to hear you are going home.
    Hope your little benign monkeys continue to work away quietly and quickly for your recovery. Take care.

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  49. I often share these writing to healing posts with my husband. I look forward to you looking back at this writing, after you are healed, and see in what ways you will respond. This is more than thinking. it is rhetorically treating yourself and that is fascinating. Your academic tools are serving your well and far beyond publication and tenure. You are bringing to words what many don’t understand – even if you don’t understand it yourself. We think of you. We send you healing forces and we read – which is healing many of us. I am glad you are writing. ~Kelly

    unDeniably Domestic

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  50. My sister-in-law (a knitter!) told me about your blog shortly after I had my haemorrhagic stroke on 10th Feb. I’ve been fascinated to read your journey because you have such a wonderful way with words. I’m now home too, and feel very fortunate that I didn’t suffer any hemiplegia so my recovey is all about building up stamina and beating the crippling fatigue. All the best for your recovery. I have no doubt you’ll do brilliantly. Just FYI my mother who is in her 70s had a stroke 4 years ago and she has learned how to do everything again so well that she lives alone with just a bit of outside help.

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  51. Hi Kate, thank you for sharing your thoughts on pain! I’m just now reading a book on Melancholy, by the Swedish philosopher Karin Johannisson. Unfortunately this book is not (yet) in English. But she point to something I find very interesting, and it is how our way of describing pain and mental stress changes through time, and also how something can be a status illness for a group of people, and disgraceful in another: in the 17th cent melancholy was a way that men could experience their own feminine sides, but melancholy was not suited for women, who were supposed to be happy and cheerful.

    Looking forward to here more about your thoughts and reflections.

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  52. God bless. I’m glad you are going ( or are by now ) home. May you fully recover in your body.

    Think and pray on this: we don’t have free will and deceptions are physical things: what has deceived you that you did have free will was fine tuned to your flesh/organics the way it was and that all just got scrambled. It’s trying to catch up again.. They really, non-metaphorically are not you and are not your friends.

    If you really, really think you’ve got free will? Does that mean that without a certain set of ideological widgets you have formerly called ‘you’ ..you can’t walk? Do people lose bowel functions or the like minus a certain ideological framework? There are creatures who know there is no free will who live very good lives and have no physical pain or loss of function. Indeed, they are truly free in Christ.

    I’ve worked around some people who were both temporarily handicapped ( stroke, etc. ) and had permanent injuries ( quadriplegic) : without fail the worst part of their injury was the loss of what they saw as at least part of their free will –that everybody else was fully deceived they actually had in the past and those who had suffered no loss of outward function who were helping them still had. They all were perfectly deceived they knew how reality worked and that meant they were on a clock of good will as a impediment to other people’s free will.

    If you lose one arm does that mean 25% of your free will just left the building?

    So the injury/stroke –only because they thought they had free will and so did everyone else– started a panic clock on how long everyone would help them or how long they could hold out themselves the hope they would fully recover the lost ‘personal power’ they once had. The inward ideology of free will came out in physical ways not seen before because it was a perfect match with the former physical brain material and was manifested to people ( who had the same brain material arrangement as the one who suffered the stroke, the accident, etc. ) in ways the deception was not used to controlling. Thus; “inappropriate behavior” ..to people deceived they have free will because that deception comes with its own emotional common sense. It is not merely ‘intellectual’.

    If none of this is true? Why are some people scared to death of the very inward ideology they once had or still have themselves in people who are physically more capable? It is always the fear of losing free will or being a drag on others people’s perceptions of free will that drives the fear.

    Be glad you don’t live in the Netherlands: they have legalized euthanasia for people who ‘don’t have free will’. ( the weak, the handicapped, the comatose ). To them, it’s a case of prove you have free will within a certain time period or lose your life. And the more you say you’ve free will everywhere else, the more people will be inclined to say, when it comes to discussions over life-saving and life-prolonging equipment “She wouldn’t want us to make her hypocritical against what she stood for and just live in a lifeless body and be unable to express her free will. She’d pull the plug on herself –if she were here.” The very preacher who keeps teaching you that you’ve got free will will say that and has taught you all to say that..

    When you have no normal physical limitations its a fine thing to keep saying “I’ve got free will.” And even then, most people say that because they falsely perceive other people have free will and they think they forestall aggression by saying that. But that gets really expensive the instant you get physically weak in some way.

    And if God grants you the grace to know you don’t have free will? Those who cannot hear God will now simply say “She changed after the stroke.” ..because they are more afraid of the lie of free will in other people than anything else in all of reality; just like you used to be.

    Galatians 5:14,15 For the whole law is fulfilled in one word, in Thou shalt love thy neighbour as thyself; but if ye bite and devour one another, see that ye are not consumed one of another.

    timothy

    In the Name of Jesus Christ, Amen

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  53. When you asked for something to read, I thought of this poem, by William Ernest Henley, which always reminds me to move on, despite whatever is happening.

    Out of the night that covers me,
    Black as the pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud.
    Under the bludgeonings of chance
    My head is bloody, but unbowed.

    Beyond this place of wrath and tears
    Looms but the Horror of the shade,
    And yet the menace of the years
    Finds and shall find me unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate:
    I am the captain of my soul.

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  54. I can imagine the monkeys gathering all that they witness and then discussing in a chatty group what solutions they will recommend. Very helpful, indeed.

    Have a happy homecoming!

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  55. Ha, it’s funny that Clare just mentioned The Brain That Changes Itself (by Norman Doidge), because I’m in the middle of it. I think about you often, Kate, when I’m reading the book.

    I think your monkeys metaphor is apt and not at all strange. They’re working hard to restore your body back to your self.

    I’m glad you’re going home!

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  56. Kate, a friend of mine sent me the link to your blog because she thought I would be interested as I was a 34 who suffered a stroke. So much of what you said rang true and resonated with my friend. The most difficult thing in recovery I found was the frustration of knowing what you want, knowing what you need, and the ability to get it across to others. I did find it sometimes easier to write and journal mainly because speaking was such a task. No one could interrupt my writing to suggest what I was TRYING to say, or HELP me with my words.
    One other thing that was difficult is a lot of the people in my situation were much older and could not relate to the idea of my need to recover to get back to work. I am in the beginning of my life.. why do they not understand? I cannot just retire or be taken care of by my children (I am single and do not have children) and move to a retirement home to recover. I am still young! I NEED to be back where I was.

    The biggest thing I learned… Where you were.. EXACTLY you will not be again. BUT this is not to say you will not be in a better place or in a different place with your recovery. The initial frustration is fair.. it is to be back to mobile and clear internally and externally without the mental blocks. But the later frustrations will be trying to be exactly where you were before your stroke. You have experienced something few have, yet sadly more are. This makes you special, which means you ARE automatically a different person than you were before your stroke. Try to remember that and keep moving upward in your recovery!

    Someone who has become a GREAT inspiration and has a GREAT book, and there is a wonderful talk on the TED site is Dr. Jill Bolte Taylor. She is a brain scientist who actually had a stroke herself. She wrote a book “My Stroke of Insight”. I think it is a great book for you AND for those close to you. I wish you the best on your recovery and from what I have read you sound like a strong woman with a great deal of love and support around you, and that is integral in your recovery. You will be feeling GREAT in no time!!! Take Good Care!

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  57. Hi Kate,
    I don’t find the metaphor at all strange, for I think it would be infinitely more difficult to try and rationalize the immensity of a brain injury just by talking about synapses and hemiplegia.
    On reading, I can recommend Jeanette Winterson’s ‘Written on the Body’, which I found (and still find) profoundly moving. It’s not *about* using metaphor to describe the body, but *uses* extensive bodily metaphor to describe relationships between people, their sexuality (as mediated by each other and with only themselves), and their bodies (again, through each other but also through illness and their own perceptions). Perhaps you’re already familiar, but it sprang to mind immediately.
    Congratulations on returning home full time – just in time for plum blossoms outside your window, I should think!

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  58. Interesting. I have had the misfortune of having a couple of major depressive episodes, and during the most recent there was a very (very) strong sense of ‘beasties’ – something else possessing the head and preventing ‘normal’ thought. But every way I would describe my emotions/ sensations was through the organic and natural world, and primarily through movement. Rotting, writhing, heaving, flapping and so forth. An interesting contrast to the way you have found that you use the language of the manmade world/ machinery to describe the brain/physical body not working together as is familiar; as opposed to my brain/ emotional self not working together in the familiar way.

    The Elaine Scarry book looks extremely interesting. I haven’t read it yet, but very much want to read The Brain That Changes Itself. Pop science, but also looks very interesting.

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  59. Dear Kate,

    I have not been reading your blog very long, perhaps a week or so before the stroke. What I saw then and still see is a beautiful, gifted, intelligent, sharing, and determined woman. I feel blessed to know you through this marvel electronic system.

    I have a granddaughter who was born hydrocephalic. Because the fluid in her brain that regulates balance was despersed all over her brain, she was unable to walk until she was three. Your determination reminds me of you. I learn things from the two of you everyday. Stay strong. You are in my prayers.

    Wishing you peace,
    Carol

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  60. Reading Elaine Scarry gave me such a new orientation & way of thinking about the body in the world. My recommendation is more Spongebob–Gary and I watch it as much as possible as it’s the funniest, smartest show since Pee Wee! So glad you’re going home, time to start planning your neep ideas for that allotment:)

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  61. Good morning Kate! I always look forward to my sunday morning date with your blog. I am so happy to hear you will be heading home soon!
    When Dan was going through cancer treatment we read At The Will Of The Body, which was helpful to us, and we read Sontag and some misc. articles, if I can put my hands on one in particular I will send it to you. During his treatment I developed an auto-immune disease and am also interested in this idea of the body betraying us, or beasties or how we relate to illness and health. I look forward to other recommended reading that you come up with as well as what you will continue to add in this conversation. Your insight is always bright and provoking. The way we talk about this stuff needs to evolve (machines, computers, war, fighting, battles, etc) we need new metaphors or clearer language.
    So here in MN where the tulips are just popping up and spring is settling in we are thinking of you and are grateful that you are doing ok and are sharing your experience. And very happy that you will be heading home soon.
    Peace,
    Virginia

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  62. Dear Kate, this is all SO interesting, and I’m awed that you’re sharing these personal experiences and thoughts despite such terrifying challenges… As a fellow literary scholar I’ve done a bit of thinking about metaphor – I’m sure you’re aware of the sheer volume of material out there – but I shall now think some more and send specific details as and when they surface (there’s a good metaphor…).

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  63. Not right on the nose, really, but Haraway’s Simians, Cyborgs and Women might have something to say here, w/r/t the ways our bodies are and aren’t beyond our own control, as you’re trying to figure out how to negotiate the world mediated by the sticks and braces, and especially in light of your point that “these tropes are perhaps a way of suggesting how inhuman and dissociating I find my recent experiences”.

    I’m thrilled to hear you’re going home :)

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  64. I don’t have a book to recommend but I’m thinking you’ll need to write one of your own given all your incredibly insightful and thought provoking posts!
    Congratulations on returning home. There’s nothing quite like waking up in your own bed I feel!

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  65. Oh, I’m so glad to hear you’re going home. It seems like you worried a little about us finding your metaphor odd, but you know, the way you’re visualizing all of this just seems so normal to me. Somehow it makes so much sense that a person who was struggling to get their body to respond “correctly” once again would be picturing confused monkeys up there in the brain. Keep it up, the monkeys will figure out their end of the job yet!

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  66. Thank you so much for sharing your ongoing experience with us. I love your writing, and your blog entries are very informative. (I actually read more of your blog these days than I did previously.) Keep the faith and I wish only the best for you!

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  67. So glad to hear you’re going home. I know you will experience even greater progress in your recovery once you’re resting comfortably at home and surrounded by friends and family.

    Sending you warm wishes from the U.S.!

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  68. So glad to read that you are going home, I’m finding your writing about your recovery absolutely fascinating, although obviously wish you hadn’t had to go through this.

    Take care.

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  69. Hurrah on going home! It’s so good to hear of your constant progress!
    As for the little people, I always loved how the workings of the body were presented in the educational (and fun! well for nerds like me at least) French cartoon “La vie”, where every cell in the body is a little creature doing its own part to make everything work. The main protagonists are several young red blood cells who are going around with their professor, who is teaching them about how everything works and what is whose role. Some clips synchronized into English are here, if you haven’t seen it before: http://www.youtube.com/watch?v=YVeZyxfKt9o
    Have a glorious Sunday! :)

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  70. The monkeys are definitely working very very hard for you. That’s about the one thing I do know! A lot of their fixing requires a bit of trial and error on their part though – but they’ll get you there in the end.

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