I have had a much better week, and have managed to remain on an even keel, energy-wise, due to scheduling my days with near military precision. Six out of seven days have been ‘good’ ones. Here are some details.
Appointments
This week I attended a record six meetings with healthcare professionals. These carry their own energy quota: one has to consider whether the appointment in itself is going to be physically tiring (as with physio); involve the expenditure of other kinds of energy (as with neurospsychology); or carry unaccountable costs (such as walking for miles around an apparently labyrinthine clinic or feeling slightly wonky after someone extracts yet another 238778689 pints of blood from your arm). Interestingly for me this week, I was also visited at home by a stroke nurse. This was really useful. All strokes are different, but I have found that many people (including those who work in the health service) have certain generic assumptions about stroke which can sometimes be very misleading. But this nurse was different: she had masses of expertise about the varied range of stroke symptoms and how to successfully manage them. For example, my stroke (or rather strokes, as it turns out I had two) began close to the surface of my brain, and involved some very specific symptoms. I experience vertigo and nausea when moving my head about, and I also have what I can only describe as an interminable itching in the precise places where the strokes occurred. I’ve been particularly worried about the latter symptom (which gets much worse when I am tired), but both, the nurse told me, are commonly suffered by people who have had a stroke involving the surface of the brain, and are part of the normal process of damage and repair. Few doctors or neurologists are interested in having a good old chat with you about the precise nature of the weird stuff you are experiencing — and frankly, why should they be? — but it was great to be able to talk to someone who really knew exactly what was happening underneath my skull and could reassure me that these things were simply part of my brain healing itself. This nurse will continue to visit me at home at regular intervals over the next six months, and she is part-funded by Chest, Heart and Stroke Scotland, to whom I am very grateful.
Exercise
Several people, including the stroke nurse, have advised against attempting to ascend the remaining six of Edinburgh’s seven hills until I have had the heart operations that are planned for me later this year. Now, to me, exercise has to involve some hard work or it really is not exercise at all, but I have been told to revise my views, and to exclude all activities from my current plans that are remotely strenuous. No more hills, then. This week, I have been experimenting with a daily walk that is all on the flat and just under a mile – it appears I can manage this with no ill effects – so walking a mile a day will remain my current peripatetic goal. Also, Mel had the genius (and very Mel-like) idea of keeping a detailed record of my small physical achievements to remind me, in the absence of significant goals like hills, that I am still getting better. The improvements I see at the moment are subtle rather than dramatic (balancing on the “bad” leg for the count of ten rather than nine; managing five good-quality hamstring curls where last week I couldn’t do any) and it is very useful to have these markers of progression.
Crafty
As I am now successfully pacing myself, I have found that its easier to concentrate on knitting or stitching for longer periods without becoming horribly tired. And I have now almost finished working up the prototype of MINI-MANU – a Manu whose proportions and sizing have been reworked to fit wee girls. The sample is worked in a lovely-to-knit-with merino /angora blend in a satisfying Spring green, and will be fastened with the buttons from Clothkits which you can see above. Setting these daisies against the soft green yarn makes the cardigan resemble a sort of miniature meadow. Wot fun! Once I’ve finished Mini-Manu, I intend to return to the rather more demanding Tortoise and Hare, and am really looking forward to knitting this again.
Reading
I have been reading quite a bit of late, including The Brain that Changes Itself, the often-recommended My Stroke of Insight, and Barbara Ehrenreich’s Smile or Die. I may surprise you by being very suspicious of both Doidge and Bolte-Taylor. I found many fascinating things in both their books: Bolte-Taylor was particularly interesting to me, as I discovered many intriguing parallels between her re-acquisition of cognitive and language skills and the sort of brain and motor processes that seem to be involved in recovering from my own hemiplegia. I also enjoyed the parts of Doidge’s book where he talked about other people’s research in the field of neuroplasticity (the ability of the brain to adapt and ‘rewire’ itself). But both books seem to be worryingly underwritten by the woolly populist wisdom of positive thinking, and here alarm bells started to ring. For example, I found the chapter where Doidge talked about his own practice of using neuroplasticity to adjust men’s reactions to violent pornography deeply weird and troubling. What Doidge is really talking about here is desire, and his arguments are just as dodgy as if he had been suggesting that brain neuroplasticity could be used to transform a homosexual desire into a heterosexual one. I had similiar problems with Bolte-Taylor. Given that she has broad expertise in the field of neuroscience, I found the book to be very narrowly focussed on my stroke and my recovery – there were few references to other people’s research, and none to the many studies of the experiences of other stroke “survivors.” And as well as the strangely egotistical feel of her book, it also seemed very odd to me that a neuro scientist would recommend the daily selection of angel cards; the exclusion of negative people from her life; and the encouragement of her brain not to re-wire itself to its anger pathways as key elements of stroke recovery (can neuroplasticity really stop you being angry?) In fact, I found much of Bolte-Taylor’s book deeply offensive. As Barbara Ehrenreich notes, anger is a perfectly legitimate and useful response when our bodies and brains go wonky. Neither cancers or strokes can be prevented or cured by positive thinking. In fact, it seems to me that neuroplasticity is increasingly being used to underwrite the sort of crazy gubbins that Ehrenreich exposes with varying degrees of success in Smile or Die (I found her chapters on Calvinism and the credit crunch rather unpersuasive). The tag-line of The Brain that Changes Itself – a quote from the review of Doidge’s book in the New York Times – is “the power of positive thinking finally gains scientific credibility.” I rather fear that in Doidge and Bolte-Taylor, the grey matter of the brain itself – a sort of bottom-line of being – is used to prop up discourses that are not just poorly researched and unscientific, but disturbingly complicit with the politics of the far right. I think there is more to be said about this issue, and I now want to read as much popular science / psychology as I can about The Brain. Any recommendations you might have would be very gratefully received. (Whether or not they are books you liked / enjoyed. In fact, I am particularly interested in hearing about those that you did not enjoy).
Day seven
When I’ve not been ranting about Jill Bolte-Taylor, other things have been taking up energy. Now, I said I wasn’t going to stay up to watch it, but I just couldn’t miss out on the drama of election night, and foolishly took radio 4 and an earpiece to bed with me on Thursday. As you might imagine, I had a very disturbed night’s sleep, punctuated by the voices of James Naughtie and Carolyn Quinn, as well as the hoots and cheers when they called in controversial constituency results. During the day on Thursday, I also took a very tiring journey to the post office and co-op. (I really can’t believe I just wrote that last sentence . . . ) This involved a round trip additional to my daily mile on foot, and some tricky manoeuvres. In fact, it was the first time since February that I have travelled to and from any sort of shop on my own. Because my left arm is weak, and my right arm supports my body with an elbow crutch, the only sort of bag I can wear is one that goes on my back, rucksack-style. While I am able to carry stuff about in such a bag, its downside is that I have to take it off my back in order to get money out / put stuff in. This involves such a ludicrous amount of struggling with crutch / bag / weak arm / unreliable leg / purchased goods that it has so far has proved an impediment to my running errands independently. On Thursday, however, I actually managed to post some items and to buy a loaf of bread (ye gods, the excitement). However, this small shopping trip really took it out of me, and combined with the effects of election night meant that I spent a whole day in a virtually comatosed state. (But perhaps many people have found themselves with similar post-election symptoms). In any case, next week I intend to manage seven out of seven, and to have some completed knitting to show you.
KDD & Co 
Hey there. This isn’t a recommendation specific to neuroplasticity, but I’ve found Steven Pinker’s books (The Language Instinct, How the Mind Works, The Blank Slate, The Stuff of Thought) to be fascinating reads on brain-stuff. His writing style is pretty tangential – I’m fond of it, but your mileage may vary.
Wishing you all the best.
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You might try hanging your back pack in the front over both shoulders. I use this method when standing in the long lines at Disney World to dispense water and snacks to children and avoid having my wallet stolen.
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Hi there
Here via a knitting friend, who thought I might be able to recommend books. I would highly recommend V S Ramachandran’s Phantoms In The Brain, which although largely dealing with the fascinating phenomenon of phantom limb syndrome, takes the time to go through the general stuff too.
I would also recommend Andy Wickens’ Foundations of Biopsychology (now in its second or third edition), which although it’s a textbook used by undergraduate psychology students is a highly readable and engaging read, and addresses most of the brain’s basic functions in a way that manages to be thorough but very accessible to the lay reader.
Hope this is useful. I wish you a full and speedy recovery :)
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” But both books seem to be worryingly underwritten by the woolly populist wisdom of positive thinking, and here alarm bells started to ring.”
May I suggest “Evolve Your Brain” by Joe Dispenza? Though he himself delves into his own spun-off interests for some of the book, mostly he dishes out lots and lots of science in an almost impossible-to-fully understand 60 percent of the book, and I think he very well explains all of the neurons, neuroplasticity, and neuro-chemical mechanisms.
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The RSA sometimes get a cartoonist to illustrate sections of their speakers’ talks. They did this for Barbara Ehrenreich on ‘Smile or Die’. It can be found at:
http://comment.rsablogs.org.uk/2010/03/17/rsa-animate-smile-die/
Best wishes,
Joan
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Ah, so now I wish you an itchy head, but ONLY for as long as that is helpful, no longer than that!
The very same alarm bells went off for me while reading The Brain That Changes Itself, and it was a little challenging to pick up and read a book that had “…power of positive thinking…” on the cover. I pushed through and I think I learned a little from it though. Radio Lab is great, occasionally frustrating but I find it enjoyable and a good source for a next read. I second the vote and say give it a listen!
Somehow reading seems easier to me than knitting after very very long days at work. Tho’ right now I can’t seem to get my knitting back up to speed, it comes and goes in waves. Your knitting always inspires and now I’m looking forward to your progress on patterns! I have yet to make a sweater that actually fit a human, large or small human. I need to just get that learning curve started, you make it look so easy. If you have any pointers for starting a sweater let me know!
When I was younger (picture an 11 year old here) I used to say “the three most important things to me are my family, my friends, and the us postal system.” (Later my best friend moved to England and I had to learn to love international mail too.) For the last few months my husband and I walk to the post office every Saturday morning so that I can mail someone I care about a little something. Sometimes a leaf, sometimes a letter, sometimes an owl hat you inspired. Thanks for rekindling my love for the mail.
Also, it’s been more than 5 weeks since I have had a cigarette. You were a big motivator for that change. (Sad but true, my health, my family, and my friends somehow weren’t enough to convince me. yikes!) “Hurry up and learn” I keep thinking. From reading your posts I started to think about the little things and how learning and change are never as fast as we want them to be, but they ARE happening all the time. I figured if I didn’t start changing my smoking NOW I might never get the chance. When I get tempted I tell myself “Kate can’t cheat when she doesn’t feel like changing or relearning.”
Thanks for all that you do and inspire. Keep learning and sleeping on it and learning some more.
m.
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http://anteaques.co.uk/
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Hi Kate,
I’m glad you didn’t enjoy the happy clappy brain book, I looked at some reviews of it when it was recommended to you it looked AWFUL!
But then I suppose I am biased, I’m currently trying to write my PhD thesis, on neurosciencey stuff. We study plasticity on a very tiny molecular basis and rewriting ‘anger’ pathways doesn’t really fit.
Bookwise I have to concur with all the people above me regarding Oliver Sacks. I especially like ‘Migraine’, but thats probably because I get them.
You must must must however, if you do not already, listen to the RadioLab podcasts.
http://www.wnyc.org/shows/radiolab/
Its an American public radio show that is about explaining big scientific ideas and cool stuff. It’s fantastic. I had a look at past episodes and some seem relevant to you… limits, stocasticity, diagnosis, placebo, sleep, membory and forgetting
(my favourite is parasites)
Also, stay away from Susan Greenfield.. she’s a crank! I saw her speak here in Edinburgh recently. I went in with an open mind, she is afterall one of a very few ‘well known women in science’, but she was awful. Most of what she said in her wide ranging and incoherent talk had absolutely no basis in evidence. And this was a talk to professional scientists, not dupable ‘members of the public’. She ignores the responsibility she has a scienctist that people will think what she says is evidence based.. grr.
So, ignore her, and listen to RADIOLAB!!!
(and also go to the teashop on S Clerk St, Anteaques, it is amazing. You will love it, if you haven’t been. I recommend the Blue Lady, an Edinburgh blend apparently. Only open Fri, Sat, Sun.)
Aoife
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I am glad to hear you share my suspicions about the positive thinking bandwagon. On good books to read: my dad has that National Geographic book about the brain (http://www.amazon.co.uk/Brain-Complete-Richard-M-Restak/dp/1426205473/ref=sr_1_14?ie=UTF8&s=books&qid=1273671453&sr=1-14) and it is beautiful and amazing.
Scientific American also put out a ‘Mind’ issue which I read occasionally, you might give it a go.
Good luck.
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Hi Kate,
Long time reader, first comment here. Interested to read your reaction to those two books and I started reflecting more generally on my past arguments with books. One time I was so disturbed by advice in a parenting book, which was pretty much saying look love, I know it’s unfair but the reality is that you’re the lady so you’re going to have to make the sacrifice and stay home for at least two years if you don’t want to damage your child’s emotional development… I tore out the pages, which is something I’ve never done to a book in my life. It seemed almost obscene. It felt good though.
I find it troubling to be told by someone who’s gone through trauma that positive thinking is what healed them-perhaps it’s somehow personally comforting, which is fine. But the implication to me always seems to be that the next girl over, like a close friend who’s not doing so well with cancer, just isn’t trying hard enough. Hmm. Woolly populist thinking indeed.
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Interesting to hear your comments on the books. I am partway through Smile or Die, a book which really appealed to me when I heard of it talking of anger as a very natural response. So much of the “positive thinking” brigade seems to brush over all the supposedly “negative” emotions.
I am young with chronic pain – not stroke related, but found a book called Explain Pain by NOI group very interesting.
http://www.noigroup.com/Product.php?Operation=SetSessionVariable&Variable%5BProductCodeID%5D=EPB
It talks about the physiology of pain and the neuroscience behind it. It provided a bridge for me between the two poles of biomedicalism and alternative medicine, and a way to look at factors in a pain experience. It also talks about the importance of doing imagined movements – something I remember you saying when you first had the stroke of imagining long walks. While its not directly relevant to strokes, you might find it interesting because it talks about how the brain works.
And on the plus side, its a very quick and easy read! The library might be the place to go as its expensive.
The best of luck with everything. Pacing is shit, I hate doing it. Sound like you are doing amazingly with it. Well done.
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Well done with your progress! I don’t have any suitable book recommendations for you, but do agree with the sentiments contained in Smile or Die. I can’t bear all this “lost their battle with…” sort of talk any more than I can the idea that every illness is due to something the ill person did/ate/drank….
Oh, & I often struggle with my rucksack-type bag even without having a crutch to juggle, so I empathise there! It’s so nice to have it safely stowed on your back for walking, that I put up with it, but I do often have to put it down or get OH to hold it while I actually conduct a transaction.
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Hello, Kate.
The thing I found most fascinating about Doidge’s book was the idea that the brain has remarkable flexibility and an ability to form or reform its pathways and responses. While this sometimes veered into unscientific digressions, for the most part I found it enlightening.
I haven’t yet read anything better than Doidge’s book. I think this is in part because the science is still quite new and not completely understood.
Martin
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I think you would probably enjoy my three favourite neuroscience and psychology blogs:
http://www.mindhacks.com/
http://neuroskeptic.blogspot.com/
http://scienceblogs.com/cortex/
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I wanted to add that I just found a talk by Jill Bolte-Taylor that is available to watch online from TED Talks, if anyone is interested:
http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html
I’m listening to it right now and I’m really interested in her account of the experience of having a stroke but it turns out she has a gratingly nasal voice, too ;-)
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I have to second (third? fouth?) the recommendations of Oliver Sacks’ books. I think the thing that I appreciate the most is that he views and writes about his patients as *people*, not just patients. More than anything, he has taught me that the brain is a truly amazing thing.
I like the diary idea. It makes me think a bit of Schmutzie’s Grace in Small Things project – she spent a year writing down five good things each day. Some of them are big (her husband), but some of them are small (“Salty tortilla chips with salsa”), and some are downright silly (“The snarfly fart noises my cat, Oskar, makes when he sucks spit through the fur on his hind legs”). I must admit that I like the silly ones the best – hooray for celebrating the wonderful continuing goofiness of life.
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The varying symptoms of strokes based on where in the brain the stroke occurred is fascinating. I wish more doctors did discuss these things with patients. For one, it helps people understand what is normal and what might be something they should report to their doctor, and then of course it helps fuel an interest in one’s own body, which I think is very valuable.
Angel cards? Geez. That is all i have to say on the matter.
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A mile a day, brilliant !
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Positive thinking works fantastically well if you are already in a position of privilege and have all the advantages such a position provides.
At least y’all’s conservatives are not as bad as ours. But I know the day-after-election feeling you describe.
Unfortunately I have packed up all my Oliver Sacks books–his books, and their bibliographies, are a rich source of other Things to Read. I’ll see what I can borrow off my sister.
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It’s always surprising to realize how many US doctors are right wing. Too frequently, doctors expect stupid patients who are uninterested in medical explanations. I love throwing a scientific term or two at them — the reaction is either “oh, someone I can use real medical words with!” or “oh crap, I have to actually explain something!” Thank goodness for nurses who almost always are willing to linger to talk medicine/biology with an inquisitive patient.
Being from San Francisco, I understand how too many voices insisting on alternative medicine and healing techniques can be grating. I believe that even if it’s often just the placebo effect, these methods can do people a great deal of good. But, I want my blood tests, CT scans, and detailed scientific information too — and I’ll resort to reading the research journals if I have too.
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I recently read the Doidge book and I totally agree about the chapter on sexuality. I was cringing at his cluelessness and offensiveness. Dude, don’t write about BDSM if you don’t have the first clue about it!
The rest of the book has a lot of interesting stuff but that chapter is an embarrassment of judgemental bad science. Repeat after me, Mr Doidge – “data is not the plural of anecdote.”
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Well now, this is all sounding very measured and wise. Measured and wise is good. I am SO pleased to hear you are getting proper and appropriate advice from an expert. I LOVE those buttons and will be zipping off to get some for myself later! And how sensible to have the radio in bed. My dear FL got up at 2-hourly intervals with a great puff of chilly air under the duvet every time he arrived or left, and insisted on updating me each time. It would have been so much better if he had just hot-wired himself to the radio like you!
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Hi Kate
I wonder if you realise how much inspiration and encouragement you (unconsciously?) give to others through your posts.
You should add this to your record of achievements. Trust me – it’s up there with your other successes.:)
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I also read “A Stroke of Insight” and had a very similar reaction to it. I found the first half–the description of her experience–fascinating, but the second half seemed to unravel into a bunch of fluffy nonsense.
I heartily second the recommendations above for anything by Oliver Sacks.
Also, you might think about using a messenger bag that slings diagonally across your body. It might not be quite as secure as a backpack while you’re moving, but it may be easier to swing around your body when you need to get money out or put groceries in.
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I generally enjoy whatever Carl Zimmer writes, and can definitely recommend The Soul Made Flesh:
http://carlzimmer.com/books/soulmadeflesh/index.html
It’s history and science, right up your street!
“Soul Made Flesh tells the story of a dramatic turning point in history–the discovery of the role and importance of the human brain. The secrets of the brain were uncovered in seventeenth century England, against a deadly backdrop of civil war, regicide, and plague.”
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Congratulations on the shopping trip – independence is such a big thing when you’re recuperating. I support the suggestion for a slung, messenger-type bag that you can push behind you when you walk or or pull forward when you need it – when I was on crutches for a short time that was the only thing I could use.
And your book reviews are priceless. Anything that smacks of ‘positive psychology’ has me gnashing my teeth. Katje’s comment was interesting – some nurses seem to be particularly prone to working from this kind of basis. Perhaps it’s a way of coping with the stream of distress they observe in their work? I’m glad that your stroke nurse is giving you the support and advice you need. There’s nothing as useful as a really great nurse, and I should know, I live with one. :)
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Kate, it’s interesting to hear that you feel itchy in the regions of your strokes! I always thought that the brain had no sensation. Then again, it makes complete sense since often wounds itch or tingle as they are healing because of all the nerve regrowth going on.
It’s good to hear that things are continuing to improve and that you are enjoying some good craft time.
I must admit that when I’m feeling particularly sorry for myself and my sore knees (which don’t even come close to the level of inconvenience and discomfort that a stroke would cause!) I think about your cheerful and determined posts and think about how thankful I am that my knees are still carrying me around on my own two feet :-)
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Great progress ! A mile per day sounds like a great idea.
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A Mile A Day, flat, brilliant !
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Yay for schedules! (exciting or not ; ) )
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I have no idea if it interests you at all, but I greatly enjoyed Matt Ridley’s Genome. It’s not a recent book (2002 perhaps?) – much of the ground breaking genetics science he talks about is old hat now but I found the way in which he follows the path of discovery of genetic functions absolutley engrossing. I found myself thinking much about the genetic coding of our most taken for granted capacities (the ability to perceive grammer for example). I also think he does well in presenting this kind of highly deterministic view of physical and mental functioning within a context of genes aren’t everything, and while genetic code may be present in all we do and are, it is not alone (and may not be primary) in determining who we are are or what we become. It was a long time ago, perhaps it wouldn’t stand up to reading now, but it affected me deeply at the time.
I would also just like to say (I hope you don’t tire of reading this kind of comment) that I am greatly enjoying your posts, I’m very impressed that in the context of this journey you are on you manage to find the energy to write it all out and find a constancy that seems astonishing to me. What you describe as small vistories or minor progress does not seem so to me – I thank you deeply for letting us share your world while we ait for the next knitting adventure! And just so you know, my daughter is absolutely bouncing off the walls in anticipation of a wee manu!
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Don’t know if you have any involvement with the RSA but its chief executive Matthew Taylor is very interested in the ‘social brain’ and often blogs on it. Norman Doidge spoke at the RSA last year. One book that has cropped up on Taylor’s blog is Iain McGilchrist, ‘The Master and his Emissary: The Divided Brain and the Making of the Modern World’ which sounds interesting if a mite long! I see from his bio that the author is a psychiatrist who lives on Skye.
Best wishes,
Joan
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Kate,
You are truly inspirational! I have been enjoying your blog for years now (as well as your patterns!)and was shocked and saddened to hear about the stroke.
Your willingness to share your recovery (ups and downs) with your readers is really amazing and a gift for us.
Congratulations on finding a good, even pace for your week! You are often in my thoughts and I wish you all the best.
Kim
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Change Your Brain, Change Your Life, by Dr. Daniel Amen. Very interesting stuff. Deals more with behaviors, the effects of food choices on the brain, rather than strokes. But, thought provoking.
You are making amazing progress! Don’t forget to pat yourself on the back from time to time.
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Interesting to hear what you thought about Doidge (haven’t read the nutty angel one). My memories of the book are all about the bits I think you enjoyed – the woman with terrible vertigo using her tongue to retrain her balance etc; I found all that absolutely fascinating!
So pleased you have the specialist nurse, I think often they are the people who have the best handle on what a condition/situation really means in real life.
Good going on the new exercise aims, and I’m glad being less exhausted helps with the thinking and crafting.
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this sounds very much like the buddhist saw: before enlightenment, chop wood, carry water. after enlightenment? chop wood, carry water.
xxx
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I recommended My Stoke of Insight to you but have to say I had some of the same reaction. I really enjoyed the first half and found the second half to be a bit daft. As to the other book … most men interested in violent pornography are much more interested in control than desire … maybe that was what the dr. meant?
Have you tried wearing your pack back to front? Not a great fashion statement but easier to get into when you are on your own. I think you sound like you are doing great!
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I was wiped on Friday too, and completely failed to do any work (mind you, a quick glance round the office showed that everyone else had too. I bet the BBC website has never been so busy).
I’m with you on the “positive thinking”stuff. While it is good to find the positives in any experience, denying the negatives means you are taking away an incomplete experience, and to an extent are in denial about some aspects. This does not strike me as helpful; people need to allow themselves to be negative. It is as much a part of the human experience as positives.
Good luck with your progress sheet.
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Oliver Sacks! Oliver Sacks!
That’s all I have to say for today – he may be a bit broad for your inquiring tastes, but damn interesting stuff. ‘The Man Who Mistook His Wife For A Hat’ is a perennial favourite for me….
xxx
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I can concur that their are certain strange branches of neuro-‘science’ that lend themselves to extensive amounts of hand-wavy (technical term, that) rubbish and dubious conclusions on limited science. The subject of the brain lends itself to some strange philosophising, because there’s so much about it we don’t know. Not that I think it’s unknowable – we just haven’t got their yet. Sadly using science to attempt to back up far-right ideology is also not a new problem.
Moving away from stroke experiences, but if you wanted some more fact based reading about how the brain works, you could try “The Human Brain” by Susan Greenfield. I gave it to my Dad when he was enthusiastically trying to understand what my research was about – I think he liked it anyway.
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ugh. I just read through most of “the brain that changes itself” and you have definitely captured my own unease with the book very succinctly.
I’m glad to hear you’ve had a good week. Good luck on the upcoming week!
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I can only repeat book recommendations you’ve already received, none of them, however, focusing specifically on stroke : Arthur Frank’s “At the Will of the Body” and pretty much anything by Oliver Sacks, though “Musicophilia” would be my top pick.
Thanks for linking us to Manu, new to me since I haven’t yet read all the posts that antedate my acquaintance with your blog. I applaud your successful search for the perfect dress to suit a not-yet-existent cardigan and congratulate you on choosing the perfect shoes for it as well. Green suede?– what a lovely find.
Best wishes for seven out of seven in the days to come.
Best
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Have you considered a one strap rucksack? The reason I suggest it is that my husband is a photographer and he has a couple of camera bags and much prefers his slingshot low pro one as he can get to everything in the bag without taking it off his back by sliding it round and unzipping the main pouch. Not sure if this would work in your circumstances but definitely worth considering.
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It won’t shock you to know that I also spend Friday in malaise of post-election shock. I managed to stay until 4ish in the morning to try and see the Brighton count but alas could not. I did ingest my body weight in caffeine on Friday to get me through my performance review. Mind you with the outcome, maybe a malaise is the best way to see through the next few months.
This was a lovely post to read and can’t wait to hear more about the crazy pseudo-science brain books. Bolte-Taylor sounds disturbing however that might just be prejudice as I have long harboured grudges against angel cards after I got dumped from a long-term relationship when the other half decided that they wanted to spend more time with the “angels”. (To this day I am still staggered by this!)
Love the idea of a mini-manu for spring and hurrah for small but regular walks. I’m sure it is really frustrating postponing the hill challenge but I think Mel’s idea sounds great to record your progress. I’m sure also that having regular walks in familiar places will further develop your love/interest with some of the places involved. I’ll be rooting for you in your quest for 7 out of 7. Lxxx
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Great post. Glad you’ve found someone to talk to in the stroke nurse. Looking forward to seeing the Mini-Manu!
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Kate, your insights on all of the things you write about constantly amaze me. Thank you for including us on your journey.
Since you asked for suggested readings/research, I thought I would tell you about another amazing fiber artist who had a stroke while young (though I believe she was older than you at the time of her cva..maybe mid-40’s). Margaret Windeknecht was an amazing weaver who published her first Color and Weave book before her stroke. She went on to produce many other monographs and cd books in addition to the art that she created. If you google her you’ll note the volume of work available.
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Yikes! The bag issue. I still have a problem with getting all the stuff in my bag once they’ve given me the change, and my stroke was over two years ago! Especially bad if there’s a long line behind you. I do use a bag strung over one shoulder; it by Queen Bee in Portland, Oregon, so it’s cute. Also my friend who walks on two crutches (she had a spinal cord injury) uses one also. Congratulations on getting to the store, and then buying something, and then getting home.
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I recommended Bolte-Taylor based on a friends’ hearing her talk. After I recommended the book I heard the Ted Talk and realized that her stroke occured on the other side of the brain from you.
I have seen many people over the years grab onto “angels” or “positive thinking” in order to deny those ‘other’ feelings that we all have inside of us. While being stuck in anger can be damaging, eliminating it from our emotional makeup would deprive us of information we need about ourselves.
I am very pleased that your analytical abilities and sense of right and wrong are very much intact!
I smile with evey post you make.
Reed
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Greetings from a wool fanatic from Australia! Cannot stop crocheting and understand deeply that it is the process not the content (or end product) that keeps me ‘with wool’. I am a nurse, used to work in a stroke unit and have just finished a post grad diploma in counselling and psychotherapy. Your words this week have captured all of my recent history! Bolte-Taylor popped up in my course in 2008, as a circulating email and I thought it was over the top. I was suspicious of left brain versus right brain and felt protective of my patients’ experiences which were nothing like a spiritual awakening. I was surprised by many of my colleagues who were profoundly moved by Bolte-Taylor’s story and thought I was a cynic and lacked compassion! What I did get more curious about was the human desire for connection and meaning and how we are ‘whole brained’ and therefore, thoroughly wired to give meaning to altered states of consciousness. I saw a great little bit of research reported by the BBC about church pipe organs and the notes that were found to be associated with church-goers’ spiritual experiences and a sense of ‘oneness’ with all in existence. Others find a way in at a rave. I just need my wool and a spare 20 minutes. Daniel Stern’s ‘The present moment in psychotherapy and everyday life’ is an interesting perspective looking at our 10 second blocks of conscious awareness and our experience of a world of happenings and our motivation to relate to others…say through a blog?!
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I am reading “The Secret Life of the Grown Up Brain.” Like many mainstream books, I’m sure it lacks scientific depth; I think it would be better as a lengthy magazine article. However, there is interesting stuff on what the brain does as it ages.
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I too was thinking that some sort of bag slung across the body might make things easier- although it might interfere with balance and walking.
You may have had enough of reading about other people’s stroke events for now. However, I thought of you when I heard an interview on the radio with the author of a book published earlier this year, “Stroke Diaries,” Oladije Williams (the diaries in question are not his own).
Having not read the entire thing I can’t say for sure, but from his interview it sounded like he has some interesting things to day. On the other hand, I never would have guessed from Bolte Taylor’s TED talk that her book would be as bad as you describe, so you never can tell.
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Six good days out of seven! Congrats! I too get excited when I see a post from you in my inbox. Keep pacing yourself and have a fantastic coming week.
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kate, congrats on the errand trip. i am glad to read that you are feeling good about incremental advances in healing. you asked for reading recommendations. i read a book by gretel ehrlich called ‘a match to the heart’. ehrlich was a writer and a rancher, and was hit by lightening, twice. each strike caused neuro-physio problems that were life threatening and long lasting. i don’t know if her recovery is at all related to yours, but there may be some insight there. in any case she writes beautifully. (her ‘the solace of open spaces’ is a wonderful book.)
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I’ve come across two magazines lately that fit your pop psychology description. *The Brain* (brought to you by the folks at Discover) and *Brain World* published by the International Brain Education Association. The latter seems a bit more lightweight than the former, with short articles on a wide variety of subjects. The November 09 issue contains an article on neuroplasticity dealing primarily with its effects on aging and dementia.
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Oooh a mini manu, I’d better get knitting mine so that I can knit a mini version asap!
:D @ seeing through psychoscience (sorry, just invented a word there) There’s so much babble about that because it is written in a scientific manner or by a scientist that gains credibility where it really shouldn’t.
Have you thought of a slingpack? I know they exist for cameras, so they should in theory exist out of that realm. That way you get the stability of something attached to your back, but can swing it round to your front and access it without having to wrangle your way in and out of it.
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I still have a post election hang-over ! All the Tory old guard creeping out of the woodwork have me yelling at the t.v.
Rather glad I’m not the only one who felt like throwing Jill Bolte-Taylor’s book across the room. I found her ‘happy clappy’ self-righteous arrogance very irritating. It was worth reading her book for the detailed description of her stroke experience and, in particular, how it effected her word finding and language.
I very much enjoy reading your analysis of everything, including the minutiae of your daily life. I don’t know how to say this without sounding a bit creepy, but I love to see your intelligence, which is far greater than mine.
You are making incredible progress. Keeping track of each small improvement is a very good idea.
I’ll shut up now !
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Glad to hear you are knitting more and have restructured your hill climbing schedule. I have been wondering about your heart, and surgery, as well as your auto immune system. I guess you might as well get all of this stuff sorted at one go, eh? Let’s hope then all the yuck will be done with and all the following years smooth sailing! What a time though.
Virginia
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I sympathise with you on the exercise front. When I had my first child, I was filled with powerful hormones – I felt I could accomplish anything. Unfortunately, as I had had a surprise c-section, anything turned out to be a short stroll around the park; even a trip up stairs totally defeated me. Fortunately, rest and time, as the cliche goes, healed all. I wish you all the best for your recovery, and hope you have a perfect 7 next week.
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I too suffered from a bit of post-election malaise on Friday and Saturday (though not as much as my poor brother who had to stay up working until 07:50 when the Bolton West recount finished!) Congratulations on your 6 out of 7 and good luck for 7 out of 7 next week.
Liz x
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Our regular Sunday morning treat! I always set aside special time for it. The elections were gripping, and I still hope I’ll be able to post a link to that postcard from your last post when we finally know their outcome…
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Wow you’re good at this pacing, I’ll be taking notes! With the post office – have you tried printing your own postage online? I’ve found it far less tiring than queuing at the post office
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you had a very busy week.
I was interested in the home stroke nurse. its great to get answers to the strange details (brain itch) of the body healing itself. otherwise a person might feel as though they were going nuts.
I always wonder and enjoy hearing about others people experiences with their health care system. we hear so much negative about national health care here.
its hard to imagine not having good access to doctors and the ability to pay for it.
I am glad that you had a good week. can’t wait to see a picture of the mini manu.
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Wot a fabulous fat gem of a post to enjoy of a Sunday morning.
How well I remember the crutch/bag/purchases/arms/wallet manouevres and hassle you describe from former days of v. active arthritis…
I am also very excited about the journal that Mel suggests… I kept a very similar journal at one stage and also an ongoing list of ‘things I can do’ and ‘things I can do that make me happy.’ These were useful and cheering for mornings when I literally couldn’t believe how long everything took or how difficult daily tasks had become.
I also look forward with great glee to further Bolte Taylor rantings and to seeing the lovely green meadows of Mini-Manu.
x
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I think Friday was a write-off for most people – I know I spent the day at work glued to online news sites and Twitter and ingesting enormous quantities of caffeine just to stay awake.
The Bolte-Taylor book sounds dreadful! I have a friend who’s a psychology lecturer and have asked her if she can recommend anything.
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Here is another reading suggestion for you. My Year Off, by Robert McCrum (The Story of English), editor-in-chief of the British publisher Faber & Faber, who was 42 years old and newly married when, one night in the summer of 1995, he suffered a massive stroke that almost killed him. This account of how that night changed his life also calls attention to the little-known fact that strokes, normally thought of as an affliction of the elderly, attack younger people with remarkable frequency.
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I can vouch for post-election languor all over my workplace on Friday. Even though many of us are not British, not many of us could resist the drama. Best wished for your continued recovery!
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