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.
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.
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.
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.
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).
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.