wheels

To get round the problem of not being able to work off my fug through exercise, Tom came up with the ingenious solution of a turbo trainer and bicycle. Obviously, I am unable to ride a bike ‘normally’ at the moment — I can’t balance, and my feet won’t stay on the pedals — but with the fixed trainer and Tom’s road bike, I can secure my unruly foot with clipless pedals and cleats and be at one with the machine.

Yes, those are my feet in Tom’s cycling shoes!

The turbo trainer is quite a discovery: there is the delicious (albeit illusory) sensation of moving at speed — something I’ve not felt for many months — and I can actually work up a sweat! I have really never been more excited by perspiration. . . The cleats mean that my foot is fixed in place, and they also help my leg to learn to move bilaterally. When I first sat on the bike, my weak leg simply did not know what to do, but because it was fixed to the pedal, I could let the strong one do the work while the other learnt how to rotate without resisting. And, after just a few rotations, the left leg began to figure things out, and tried to join in. The leg goes round and round – amazing! At the moment, of course, the trainer is so tiring that I can only get on it for a few minutes at a time, but I am enjoying it immensely, and am sure it is doing my leg the world of good.


Cycling in the kitchen!

I really wish that I had tried this before. Getting on an exercise bicycle had crossed my mind, but I just thought I would be too lopsided and unbalanced to do it. I have noticed that there are adapted bikes at the place I go to for my outpatient physio, but their use has never been suggested to me. Physio appointments are short, and their recent focus has been on my assumed need to relax, which I frankly find a total waste of time – I do far too much of that already. And while we are on the subject of wheels . . .

. . . this is my new shopping trolley. I still find it difficult to carry anything on my back or shoulders, and even a small handbag can knock my gait out of kilter when I’m walking along outdoors. But this wheely thing is brilliant – it is extremely light, yet sturdy and stable. I can pull it about with me, pop into the shops, load it up, and wheel it home. It folds up small when not in use; can be hooked over the back of a supermarket trolley; and gives me added support when moving. It also comes with a stylish tartan stripe — I shall be the envy of every Edinburgh octogenarian.

I’m also enjoying working on a new design

I like to fancy that there is something of the architecture of early skyscrapers in those slipped stitches, but we shall see how it turns out.

All of which is to say that I am doing ok, and keeping my head above water. Your supportive comments and messages always buoy me up and help me to keep things in perspective — thankyou, as ever. I am trying to get on with things, as you can see. And next week’s exciting project will be to try to learn to swim again, as we are exchanging our local beach at Crammond. . .

. . . for one in a much warmer location. Some sun and heat before Autumn sets in is probably just what I need. See you in a couple of weeks.

six out of seven

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.

I got rhythm

My relationship to music and rhythm has altered over the past few weeks. One of the bizarre and unaccountable effects of the stroke was that I appeared to lose my musical ear. My Dad is a musician; I grew up playing several instruments, and, in one way or another, music has always played a significant role in my life. Like many people, there is often a song in my head, and when I’m pottering about on my own, I like to whistle or hum it. A week or so after having the stroke, I was in the hospital shower and tried to sing. I was distressed to discover that I couldn’t find a melody and that all that came out of my mouth were tuneless ramblings. I tried to put this problem to the back of my mind: there were more pressing issues to deal with, and an acute ward is no place for singing practice. However, on my first weekend home, I put on Ella Fitzgerald, tried joining in with “The Frim Fram Sauce” and found that I couldn’t sing a note. I also noticed a few other odd sensory effects, which I suppose may have been related to this phenomenon: I often had a ringing or whooshing in my ears and perhaps because of this, I did not really enjoy listening to music at all. Also, my sense of smell was heightened to a most peculiar degree and odours that I would usually have found pleasant to encounter became almost unbearable. Now, I have not read any research about this, but I am assuming that the monkeys at the controls in my head had become somehow confused. Perhaps there was some injury to the sensory, as well as the motor part of my brain, or perhaps the monkeys were too distracted rewiring my leg and arm to pay any attention to my olfactory or musical abilities.


(Gibbon)

But, unlike re-learning my motor skills, it appears that the monkeys don’t actually have to teach me to smell or sing again. As time has gone on, these sensory anomalies seem to have simply faded away. The bad smells and weird sounds have disappeared; I’ve begun enjoying listening to music again, and I can now sing along to Stevie Wonder or whistle the theme from the Hebrides Overture with no problem at all. Happy day! Yet while my melodic faculties appear to be intact, the same cannot be said of my physical timing. I aint got rhythm.

My gait is irregular and fitful. It has taken me a while to get used to the new brace and stick, and for a good few days after their introduction, my steps with these assistive technologies remained lolloping and camel-like . Once I’d got used to them, I progressed to a kind of ungainly waltz, the stick leading the way on the first beat in the bar. This week’s great achievement is that, after hours of grueling strengthening work on my hip and upper leg, I can now manage to move forward without dragging my left foot. At their best, and for around a hundred metres, the stick and the legs now work together in neater and comparatively natural 2/4 time. So there is some progress here. But, despite many dextrous advances, the gross movement in the left arm remains worryingly uncoordinated. In an effort to correct it, I’ve joined the Astley’s upper body exercise class. It really has taken a great deal for me to do this: I’ve never been to an exercise class in my life and despite the public silliness you see displayed here on a regular basis, I am in reality a rather private person. Throwing shapes in company is not really my idea of fun. Added to which is the problem that, at the moment, my left arm has diminished function, very little strength, and an unfortunate mind of its own. Sometimes it wants to join in with whatever the right arm is doing; other times it just refuses to play at all. Anyway, to be frank about it, I’ve been too ashamed of my left arm’s erratic behaviour to go to this class, despite the encouragement of my therapists and my pals on the ward. But I gathered my resolve and went along for the first time on Thursday morning. It was pretty horrendous. This was not because of the atmosphere: the physios are uniformly brilliant and the usual gym banter is enhanced by the presence of the blokes from ward 1, who are always good for a laugh. The class was so difficult because, however hard I try, I just can’t move my arm in time. As the class is conducted to the sounds of jangly 70s disco, a basic sense of bodily rhythm is pretty much essential.

While everyone else was “mowing the lawn” and “doing the crawl” to the beat of Ra Ra Rasputin, I was flailing about in a manner that was unpredictable and woefully out of time. So I did not enjoy the class at all but however unpleasant I found the experience, I also knew that no one was judging me for not being able to dance like a diva, and that the only way the arm was ever going to regain rhythmic function again was through practice. So I’ve put my feelings of ignominy to one side. I returned to the class on Friday and shall continue to attend this week in the hope that, with the assistance of Bony M, bilateral rhythm will at some point return.

In other news

1. The highlight of my day is opening the post. This generally turns up at lunchtime, and is a far more welcome arrival than the food. I love to read your cards and letters and it cheers me immensely to look at the jolly display they make on my institutional pinboard and shelves. At some point I will say more about the profound effect your correspondence has had on me, but for now, a giant THANKYOU to you all.

2. The grey complexion of institutional daily life has been made immeasurably rosier by two members of ward staff who fully understand my fondness for tea. These women refer to me as the Tea Jenny (a fine Scots moniker) and humour me with the regular provision of a full pot instead of a meagre beaker. If you’ve spent any time in hospital, you will know that there is never enough tea, and that some members of staff (whose approach to ward culture and protocol can be worryingly similar to that of Kim Jong-Il) assert their power by restricting the consumption of tea within strict measurements and guidelines. Is it coincidence that my kind tea givers also happen to be knitters? I think not.

3. Last night, I watched a film that really annoyed me. Though I did not enjoy the film, the annoyance I felt while watching it was strangely reconfirming and really made me feel like me again. Hurrah! I’ll try and write another post about this if my hand holds out today.

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