Five years on – part 1.

It is coming up to the anniversary of my stroke, and I find myself reflecting, in various ways, on where I am now, a whole five years later. I’ll write about different aspects of my recovery in other posts, but today I want to talk about the change in my employment. I’m a knitwear designer now, but as many of you will know, in my pre-stroke life I was an academic, teaching eighteenth-century literature and writing books about eighteenth-century women. One of the things I’m asked most frequently – particularly by academics – is whether I miss working in academia. . . here’s my response.

From a very early age I wanted to study literature. I loved reading and was horribly precocious. I worked my way through the shelves in my school and local libraries and then rapidly devoured everything on my parent’s bookshelves: Joseph Heller, Spike Milligan, Iris Murdoch, Giovannio Guareschi, Patricia Highsmith, Josephine Tey. I recall being reprimanded for reading my mum’s Georgette Heyer novels when far too young to understand them. I also vividly remember, after receiving a radio for my ninth birthday, hearing an interview with someone who mentioned that they had read the Prisoner of Zenda by the age of nine. I was horrified! I had not read the Prisoner of Zenda! Time was passing me by! I had better get a move on reading all those books. By my early teenage years my aim was more determined. I was going to University and I was going to be an academic. I went to York, took my B.A, and stayed there to pursue a Masters and a PhD. I was appointed to my first academic position at the University of Sheffield at the age of 24 – before I’d even submitted my doctoral dissertation. Between then and my stroke (at the age of 36) I taught eighteeth-century literature in three different Universities. I never lost an interview, and was successful in every job I went for. I worked extremely hard. My research was well regarded. I wrote books. I received grants and awards. I was promoted.

But I wasn’t happy. I loved reading, I loved research, I loved writing. I loved the world of the archive and ideas. That world made me feel alive! I was passionate about eighteenth century literature and culture, and about women’s writing in particular. But there’s a lot more to being an academic than being a good scholar. In the UK, permanent academic posts in the humanities are hard to come by, and hard fought for. I was surrounded by junior colleagues who were constantly jostling for those positions, and suffering while they jostled. I saw committed, talented intellectuals failing to be appointed to academic positions, and cobbling together meagre incomes from part-time teaching posts. I had a position. I had a succession of positions. I was one of the lucky ones. I should have been grateful. I tried to be grateful. But I just didn’t enjoy my job. I didn’t enjoy teaching – I was never really able to relax – and though I hope most of my students would say I was a reasonable teacher, in all honesty, teaching wasn’t good for me. I tried to get on with it, and to do it well, but in some sort of deep fundamental way I was simply never, ever comfortable in the classroom. In the academic positions I held, there was of course an awful lot of teaching and there was an awful lot of administration too. Though it certainly wasn’t the life of the mind or anything, to be honest, I was fine about the admin – I took on roles with lots of responsibility (chair of examiners, chair of graduate studies) and rather enjoyed building efficient systems and implementing them. What I did not enjoy implementing, however, were nationally determined policies with which I profoundly disagreed (such as aspects of UK anti-terrorist legislation concerning foreign students) and there were also many institutional policies and practices I had a very hard time accepting (such as actively recruiting poorly-qualified graduate students from notoriously oppressive (but wealthy) regimes simply in order to swell dwindling institutional coffers).

I felt I should be grateful – but I wasn’t. The workload was immense and ever-expanding, the job was demanding and tiring. Teaching, marking, preparation, admin, and an insane mountain of email bled into what little time remained for writing and research. There was less and less space for the actual scholarly, intellectual aspects of my role, the things I really loved and by which I was inspired. I kept myself going with the impetus of the next sabbatical, the next grant that would pay for some longed-for time in the archive. By 2009, I was profoundly unhappy – in fact, I actively hated my job. I began to nurture wee pipe dreams about what life would be like if I went part-time. There would be more space for knitting and pattern writing (with which I’d recently become obsessed) and perhaps I could actually find the time to research and write my next book! On top of the day-to-day grind of my job, the deleterious mental effect of its demands, compounded by increasing feelings of entrapment and desperation, I was being dogged by a micro-managerial colleague whose treatment of some members of staff – myself included – amounted to a form of bullying. I have worked with lots of difficult people in different University environments, but this person was on another level entirely. In November 2009 I hit a low point. Since I’ve been a teenager, I have always found the Autumn and Winter months incredibly difficult mentally, and this was particularly so in 2009. My seasonal mood disorder was familiar and inevitable, and I had ways of coping with it – but in this instance its effects were compounded by job-related stress, general unhappiness, lack of sleep, and a horrible colleague. That November, I found myself suffering from severe depression, paranoia and disturbing psychotic episodes, during which I experienced altered states of perception, and suicidal ideation. Things became critical: after a particularly disturbing and dangerous episode, my GP firmly insisted I took some time off work. After having felt I’d turned a corner, I returned to my job in January 2010. On February 1st, 2010 I had a stroke.

Was my stroke related in any way to my poor mental health? On a purely physiological basis I believe it was. As a result of the depression and psychosis, I had lost quite a bit of weight and by that point was around 6.5 stone / 90 pounds (I am depicted thus in the photographs for Manu). My blood pressure had always been on the low side of normal, and due to my weight loss and general malaise it had become even lower. When my stroke occurred, my blood pressure, from its usual ultra low point, spiked to a high point, as it was suddenly elevated by by the stressful thoughts that were running through my head. This sudden spike in blood pressure caused two quite normal blood clots to pass through a hole in my heart and find their way to my brain. In the milliseconds before the stroke occurred, I was worrying about how, in a forthcoming meeting, I was going to defend my sanity to my micro-managerial colleague. She didn’t cause my stroke, but I’m sorry to say that for me, she will forever be associated with that moment.

It is perhaps something of a ludicrous cliche that stress and stroke are related (“she was so stressed out, she had a stroke!”), but the very real physiological effects of poor mental health certainly give one pause for thought. While many strokes in young people are cryptogenic, the cause of mine was pretty clear: I had a hole in my heart creating a leaky passageway between my arterial and venous systems – put a couple of clots into the equation and I was a ticking time bomb! Perhaps what happened was inevitable, and I would have had a stroke at some time in the future anyway. But it still seems significant that it occurred at the very point when my mental health was at its poorest, and when my physical health had suffered severely as a consequence. I’m not sure what a neurologist would say about this, but my stroke has certainly impressed upon me the relatedness of mental and physical health, and the real importance of looking after both.

Sometimes I am annoyed at myself for not realising sooner just how ill I was. How could I let myself get into that state? Why could I not acknowledge I was so severely depressed? Why did I rush back to work when I still wasn’t well? Part of the problem was something pretty common in sufferers of my particular kind of nuttiness: a complete lack of insight into the severity of my condition, coupled with a total inability to be objective. When you are in that state, depression makes perfect sense. Suicide makes perfect sense. There’s something unanswerable about it. And when it gets to the stage where you are seeing things, and believe that your mind is responsible for changes in the light and weather conditions, and you should probably be sectioned, and are only saved from ending your own twisted, unreal reality by a brilliantly understanding GP and a wonderful and equally understanding partner, things have really got to change. If I’d realised how ill I was, perhaps I would have made that change. But I simply didn’t grasp the critical nature of my situation, and I could never bring myself to give up that scholarly dream: the dream I’d had since I was nine.

My stroke meant I had to walk away from academia. It was initially tough to do so – I did grieve about it for a while, feeling I was giving up so much intellectually – but I look back now and I have no regrets at all. The things I enjoyed about it – the research, and the writing – are things I still enjoy, and can now pursue with much more creative freedom. How I wish I’d known I could run a business, and that it could be fun! People are, in general, much much nicer in the world of knitting, design, and small publishing than they are in universities. . . . I am now able to pursue and develop ideas from the things that inspire me, to work with people I genuinely like in a wonderfully creative industry, and to make things I really believe in. I find my work massively enjoyable and completely fulfilling – and it comes with the additional benefit of supporting me financially.

I was recently asked what I missed about my academic job, and I could honestly only think of one thing: a thing so shallow and inconsequential that it is barely worth mentioning (but I shall tell you anyway). I miss getting dressed to go to work: I used to really enjoy styling clothes, putting outfits together, and donning something smart on a daily basis. Nowadays I mostly sport what Tom refers to as my bumpkin suit – a suit that befits a country-dwelling person who runs her business from home and spends a lot of time outdoors in all weathers. But then I still get to dress up whenever I feel like it, and I still enjoy exercising my styling acumen putting together outfits, particularly when photographing my designs. So, what do I miss about academia?

Absolutely nothing.

milestone

dumplingview

I am extremely happy to tell you that I have passed my driving test! The process has not been easy and has never felt straightforward, but at last I’ve got there! The main issue is that my spacial awareness is somewhat skewy, and this makes things like road positioning and reverse manoeuvres rather tricky. I’ve failed two tests already (and on both occasions reverse manoeuvres were the issue). But John, my driving instructor, a man of genuine calmness and good humour, has lent me the confidence to stick at it. Meanwhile Mairi, my next door neighbour, has been enormously kind and incredibly encouraging. With the patience of Job, Mairi (who is a completely natural driver) has determinedly sought ways to make reversing make some sort of sense to my messed up brain. Well, we finally cracked it and I managed to get through the test yesterday.

I don’t need to tell you what a massive difference this will make to me. Driving is a really important milestone in my post-stroke return to independence, and just being able to get about on my own means such a lot. After the test yesterday, I got in my wagon, drove a few miles to Gartochan, and took Bruce for a walk up Duncryne (a hill known in these parts as “The Dumpling”). It felt pretty good to see this view.

ONWARD!

Islay snaps

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1: Bruce loves the beach

portnahaven
machirbay
2, 3: Great photoshoots in my favourite locations

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4. tasty crabs claws at the Port Charlotte Hotel

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5, 6, 7: Discovering Billy’s Bench near Bowmore, and a Scarlet Pimpernel growing through the shingle at Portnahaven

skies

8. Fine weather for walking

crag

wazzstrider

9, 10: The first time in four and half years that, while away, I have not been bothered in one way or another by my health or my physical limitations. Am I really so much better? Or have I merely finally adapted to my “new normal”? Either way, it felt pretty good to climb up behind that crag, to see that view.

driving update

bunnet

Those of you who have been following my post-stroke progress may be interested to hear how my driving is going. Generally speaking, I have been for the past four years very dependent on others (specifically Tom) for basic travel, shopping, and all the other daily tasks for which a car is necessary, particularly in a rural location. It can be a wee bit frustrating at times. But today I passed a sort of independent-mobility-milestone and it feels pretty good. I have been learning to drive with a wonderful instructor (John) in a small car (an Aygo). I’ve been making reasonable progress, and have even been enjoying the process, though I do feel quite physically vulnerable at times. Our van is bigger and heavier, with poor visibility, and I am definitely much more aware driving it that my left arm remains quite weak. But with Tom I’ve driven in it to a few of the nearby villages, and am certainly improving.

lplate

Last weekend I placed a successful bid on a set of four dining chairs in the Glasgow Auction. Tom is away with work at the moment, so he could not pick up my spoils . . . I had to get there myself, and my next door neighbour, Niall, kindly agreed to accompany me. This morning I drove the van with Niall into Glasgow, retrieved my chairs, and drove back home again. WOOHOO! This may seem a small thing, but I can’t tell you how enormously exciting it feels to have got into the city under my own steam and to have accomplished this simple task (relatively) independently.

chair

This is the carver of the set, and it is really rather nice, as you can see. At £30 a pop I think I got a good deal: the seat pads need a bit of work, but nothing more serious than cleaning and re-stuffing the horse hair and embroidering new covers for a couple of the chairs – a project which I shall greatly enjoy. And perhaps when I sit on my chairs I can think about how good it felt to be driving again.

looking back

dumgoyne

2013 has been a very interesting year. For us, its main event was undoubtedly leaving Edinburgh, and moving out West!

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It would perhaps seem to be a massive change, moving from a busy city to a sleepy steading just off the West Highland Way. But I immediately felt at home, and the fact that this change did not seem radical at all, suggests to me how well our new surroundings suit us. I am certainly wading through much more mud and cow shit on my daily walks, and I fear my appearance has grown a wee bit more raggedy and bumpkin-like, but otherwise things go on as usual. With more space. Which is nice.

hiya

2013 was a year of new contacts and collaborations.

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(Peerie Flooers on Ann Cleeves’ Shetland)

. . .with the BBC

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(Nepal Wrap)

. . .with Rowan

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(Shepherd Hoody)

. . .with Juniper Moon Farm

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. . . and, perhaps most excitingly for me, with Gawthorpe Textiles.

I have been exploring texture much more in my design work this year, and have really enjoyed using simple garment shapes to explore the potential of cables and lace.

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Catkin

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Braid Hills

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Port o’ Leith

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Firth o’Forth

But, as Autumn turned, I was bitten by the colourwork bug again, and now find myself once more on something of a colour kick.

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Tea Jenny

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First Footing

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Toatie Hottie

And perhaps most importantly on a personal post-stroke level, during the latter part of this year, I can say that I have finally begun to feel reasonably “well” on a pretty-much consistent basis. There have been far fewer bouts of debilitating fatigue, and no weird neurological incidents. I spent 6 weeks engaged in the demanding physical task of redecorating our new home with no ill effects, and I can now plan on working a full day, walking Bruce, and performing any necessary household chores: a level of “normal” activity which was completely unimaginable in the years immediately following my stroke. Part of this sensation of wellness is perhaps that I have finally adapted to my post-stroke self, and have a much better awareness of my limits (for example, I still need 10 hours sleep to function normally), but it is also important to point out that, almost four years after the event, I am still seeing significant improvements in my gait and strength on my weak side, as demonstrated in this recent swants leap.

sweeksarego

Thankyou all so much for stopping by, for reading and commenting, and for supporting my work in 2013.

Here’s to a grand new year for us all! Slainte and Happy Knitting!

wazznbruce

different shoes

shoes

It is almost three and a half years since my stroke. Conventional wisdom about post-stroke recovery suggests that the first neurological adjustments and improvements after a brain injury are very rapid, and then tend to plateau off after the first six months. The importance of this “six month window” was often repeated to me by various medical practitioners, and I remember very clearly that one of my biggest fears in the weeks following my stroke was that, some point in the future, I was going to feel retrospectively guilty about not having done enough to maximise my recovery during that time. But every stroke is different, and looking back now, it seems to me that these arbitrary post-stroke “recovery windows” are really of most use to those involved in making ethical / financial decisions about resources and the provision of care. Telling someone who has just had a stroke that they have six months in which to complete the difficult work of neurological recovery to the best of their abilities is frankly not that helpful and can, as it did in me, heighten the general terror and desperation of what is already a pretty desperate time. Very little research exists into long-term post-stroke improvement, and, after the OTs and physios have done what they can, one is pretty much left to one’s own devices. But from my own entirely partial perspective I would say that, though the pace of recovery is certainly much slower long-term, one can still notice improvements two and even three years down the line. Though I am resigned to the fact that my damaged left leg is never going to enjoy running, and that my balance issues will probably always make riding a two-wheeled bicycle impossible, I still occasionally discover that I can do something now that I couldn’t say, six months or a year ago.

Footwear is incredibly important if you have a neurologically damaged leg and foot, and I have found that a really effective way of making improvements in my mobility is simply by changing shoes. A different pair of shoes can initially impede one’s mobility — the gait alters, the foot drags, the limb refuses to make the routine movements that it made just yesterday. But, although effectively heightening one’s own disabilites in this way can be both uncomfortable and annoying, walking in different shoes forces the damaged limb to adapt to different billateral rhythms and movements. The good limb also shows the bad how it has to deal with the minute alterations in weight and pressure forced upon it by its new environment. The good limb helps the bad one on its way.

I tend to walk around 4 miles a day, and until very recently, my choice of footwear was limited to sturdy boots with a lot of ankle support. I could certainly walk a little in flat shoes (with orthotics) but found it difficult and tiring. Often, after a mile or so in flats, my left leg would simply give up and revert to its dead, dropped state while the right one carried it hesitantly and judderingly along. Then, in February this year, I decided to try an experiment. I would alternate my footwear daily, completing my normal walking routes in several different pairs of shoes and boots, including flats. This wasn’t particularly easy, but I noticed that after just a couple of weeks that my left foot was adapting to the changes forced upon it more rapidly, and that I could walk further without problems in shoes I was unable to before. I also found that these continual changes and adaptations helped with other, non-walking activities, such as pointing my toes in order to put on a pair of socks or pants (a gesture I have found frustratingly impossible for the past three and a half years). Then I discovered that I was able to hop (albeit briefly and inelegantly) on my left leg for the first time since my stroke. I continued with the footwear changes: things continued to improve.

In March, I bought the pair of sandals that you see above (shamelessly copying Jen, who had recently acquired a pair). They are a great fit and very comfortable but when I first stuck my orthotics in and started to walk, my left foot flapped about, clown like, and after a mile or so I’d be limping and dragging the foot quite badly. But I gradually forced the unruly foot to adapt by including the sandals in my alternating-different-shoe routine. By April, they had become my go-to shoe, and since then, I’ve walked over 350 miles in them. Last week I encountered one of my good dog-walking buddies, an elderly gent, who I first met three years ago when I was still getting about with a leg brace. As we were passing the time of day, he remarked on how very much my walking seemed to have improved of late. I was aware of this, but it was nice to hear it. “I’ve just been wearing different shoes,” I said.

I am repeating this experience for those with brain injuries or other neurological impairments who have been told that their recovery period has a window, or that it is somehow at an end. I honestly don’t think that the work of neurological recovery or adaptation will ever be over for me. I will certainly keep forcing the parts of my body and brain that were damaged by the stroke to make whatever small improvements they can. I’ll keep on wearing different shoes.

Because I know you will ask, the sandals are made by Red or Dead, and are a style called “Jade”. The socks are a pair I knitted from Rowan Fine Art sock yarn, and are holding up remarkably well to their daily mileage.

still making

yarn

Worry not . . .I’m not going anywhere.

I produced yesterday’s post because:
1) this is my space and its useful for me to have a record of such decisions
2) this is your space too, and I like to be honest with you
3) some of you may have been expecting to run into me at various events, and it is only fair to inform you of my absence

Really, I am OK — I am just someone whose health can be annoyingly variable and who, because of this, has limited resources. I have to use those resources in the best way possible, and pondering the imponderable question of whether or not I may let someone down because I may be unwell at a certain point three or four or six months down the line is simply not a good use of these resources. I have to cut myself some slack, and yesterday’s decision is simply the best way for me to do this. I know that all of you living with chronic conditions, or who have experienced the interminable frustrations of recovery from strokes and other brain injuries know exactly where I’m coming from (a big shout out here to Jen and Dancing Beastie with whom I feel tremendous solidarity).

heels

The thing is, that however rubbish I am feeling, I cannot stop making stuff. I might have felt totally crappy last week (you know things are bad when getting dressed marks the day’s first insurmountable hurdle) but I still turned out a sweater and this pair of socks. The experience of grafting the sock’s last stitch, or of putting the sweater in to block, probably represents accomplishment at its most basic, but I can tell you that such experiences have saved me from some very black places when I’ve been at my worst.

socks

So I want all of you, my virtual friends, to know that though you might not find me at a show or in a class, you will generally always find me here. Still making.

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