An online friend sent me a link to this Guardian article, which raises the issue of Stroke misdiagnosis in children and young people. The article tells the story of 13 year-old Isaac, whose stroke was caused by a hole in his heart, and whose condition was incorrectly diagnosed following a CT scan. This is exactly what happened to me five years ago. Stroke misdiagnosis among “non-typical” patients (those who are young, apparently healthy, and without ‘usual’ risk factors) is a surprisingly common and serious issue that urgently needs addressing. Here’s what happened in my own case.
As I was whisked away to hospital on that cold February morning in 2010, I recall trying my hardest to ask the ambulance paramedic “have I had a stroke?” To me this seemed the only logical explanation for the sudden horrific event which had left me half paralysed and barely able to speak. At the hospital, I was seen by an eminent Edinburgh neurologist, who breezed in with his satchel. He looked at my notes, conducted a brief examination, and sent me away for a CT scan. A CT scan is a notoriously blunt instrument in stroke diagnosis, and mine showed no abnormalities. “Good news” said the neurologist, “you haven’t had a stroke.”
“Then what on earth has happened to me?”
“Do you have a stressful job?”
“Yes I do.”
“Would you say you were suffering from stress at work?”
“It seems your body has decided to convert that psychological stress into a physical reaction.”
I was absolutely mystified. It was certainly true that I was at rock bottom mentally, and that my condition had been exacerbated by work-related stress, but was I really so damned mad that my brain had made my body just give up? What on earth could this mean? The neurologist wrote up some notes. I received no medication or treatment of any kind. I was taken to a neurology ward, rather than the stroke unit, and manouevred into a bed.
“What’s going to happen to me?” I asked the ward sister.
“We’ll have you out of here very soon” she said.
This was early in the morning, and that first whole day and night on the ward were truly the worst hours I’ve ever spent. I recall feeling extremely peculiar – my whole body fizzed with a painful and horrible paresthesia (pins and needles). I had an appalling headache, was experiencing visual disturbances, and could hardly hear or speak. The world kept going in and out of focus, and I had no movement at all down the left side of my body. My face drooped, the left side of my mouth flopped uselessly, and I just slumped over when I tried to sit. I was brought some food, which I managed to eat with my right hand. I called the nurse when I needed a pee. Getting me to the toilet was a strange and difficult palaver – one of the many things me and my newly disabled body were going to have to get used to. Poor, ashen-looking Tom was told to go away and find me some clothes suitable for a hospital stay. Left alone, I was completely and utterly terrified. I cried with fear. Was I completely mad? What was happening to my body? What on earth was going on with me?
The following morning, I was greeted by a pleasant medical student. She very carefully conducted a full neurological examination. She took her time and was extremely thorough. My dead left leg became the focus of her particular attention. She lightly and repeatedly hit it with one of those small hammers which, until that moment, I had never really seen in use outside of a child’s play medical set. Though the leg was completely dead to me – I was unable to move it at all – it seemed that its reflexes had become extremely intense. When she hit it, it juddered and shook wildly. The student compared my left leg to my right. While the right leg displayed a brief and ‘normal’ reflex reaction, the left reacted with uncontrollable spasticity. The student disappeared, and returned some moments later with one of the ward’s junior neurologists. She demonstrated the different reactions of my two legs to the hammer. There was a hushed and animated discussion.
Then things started happening very quickly. A wheelchair was found, and the medical student personally whizzed me off to the MRI scanner. I bypassed a waiting room full of people and was lifted into the weird tumble-dryer, where they looked at my brain. When I emerged, I could tell from the faces of the scanner operative and the medical student that something was really very wrong. The student pushed me down another corridor, to the cardio-vascular unit, where I had a bubble test. The MRI had shown that two rogue blood clots had found their way into my brain and destroyed a significant portion of its right hemisphere, while the bubble test revealed the hole in my heart through which those clots had passed. As I had assumed in the ambulance, as I had felt the whole of the previous day, I had indeed had a stroke. The medical student had suspected this from my leg’s intense, uncontrolled reactions to her hammer. This is known as clonus, and it is a positive sign of serious neurological conditions, such as stroke and MS.
Back on the neurology ward, things were very different. I was swiftly injected with heparin, and carefully examined by several other neurologists, including the eminent one who had initially misdiagnosed me. I became very aware that the attitudes of a small number of staff – most notably the ward sister – had markedly changed toward me. She was super-attentive, friendly, sympathetic. It slowly dawned on me that on the previous day she had regarded me as some sort of odd, malingering hysteric, but that now I was a different sort of a patient – a patient with a serious brain injury, a patient who had been disabled by a stroke.
The neurologist who first examined me had looked at my medical records, seen the barrage of psychiatrists and psychologists and GPs reports, read about my psychotic episodes and recently-diagnosed mood disorder, and decided that I was one of those highly-strung, over-achieving types – the types who, when heading off to their stressful jobs on a monday morning, find that their brains and bodies have just about had enough, and fall over, paralysed. Indeed, I was perhaps the type of woman who studies suggest are most prone to suffer from Conversion Disorder – what used to be called hysteria – but that was not why I had ended up in hospital. I was there because I’d had a stroke. I had been misdiagnosed by an eminent neurologist (who based his decision on years of experience and his own assumptions) and correctly diagnosed by a junior medical student (who had little experience, but who was intrigued by medical fact).
I hold no grudge at all against the eminent neurologist. After his initial mistake, I felt he consistently treated me as a human equal, and, in subsequent decisions about my care, I always felt he had my back. He was also quick to admit his error – indeed, he held it up as an example. A few days after my stroke he took me to a meeting of around 50 Scottish neurologists, where I was questioned about my background and my symptoms, and where his own misdiagnosis was revealed. I was taken out of the room before they discussed how they had actually got to the bottom of the matter, but I saw the medical student was there in the room at this meeting. Her name, I recall, was Laura. I hope they gave her a hearty round of applause.
I spent one day as a person who had been incorrectly diagnosed with Conversion Disorder. It was the worst day of my life. I really can’t stress the importance of my stroke’s correct diagnosis strongly enough. It allowed me to receive the right treatment, as well as to understand what was really happening to me, but this did not happen until around 36 hours had passed since my first arrival at hospital. Did my brain suffer further damage in that interim? Would my recovery have been swifter, or more complete, had I been given immediate thrombolysis or other clot-busting medication? No one can say. I think I’ve really done pretty well with recovery so far, but as the Guardian article makes clear, new diagnostic guidelines for stroke in children and young people are most definitely, and most urgently, needed.
Thanks to Joan Keating for sending me the link to the Guardian article.
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 earlier 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?
Hello! I hope you’ve been enjoying the first days of 2015. We travelled down to England to spend some time with my mum and dad — the latter of whom is pictured above, on tenor sax. Its been quite a while since I’ve heard my dad play. One of the worst consequences of my stroke was its effect on my hearing – more specifically, on my ability to apprehend and process sound. This meant that my relationship to music – one of my great loves – changed radically overnight. I virtually stopped listening to the radio; never put on a CD, and found live music a particularly difficult – often even painful – experience. I will write in more depth about the changes and improvements I’ve noticed recently another time, but let me tell you that it meant an awful lot to me just to be able to sit at Sedgely Park rugby club last Sunday with Tom and my mum and actually enjoy hearing my dad’s music again. As well as being a superlative sax player, my dad writes great jazz tunes, and recently composed a piece entitled Rhythm St Annes, which commemorates the (to me) momentous day when I managed to walk from St Anne’s to Lytham a few months after my stroke. It was really wonderful to hear him play it. We had a lovely afternoon.
It might interest you to know that my dad (Wally Davies) the drummer (Nigel Cretney) and the pianist (Gerry Tomlinson) all attended the same Prestwich primary school in the 1940s. All came of age in the vibrant 1950s and 60s Manchester jazz scene and all are still playing jazz today, around the North West.
I’ll be back soon with some knitting. Happy new year to you all!
I can’t believe quite how much my horizons seem to have expanded in the fortnight since I passed my driving test. Every day I’ve been able to take Bruce somewhere different for a walk.
As you can imagine, Bruce is enjoying this immensely. Each time I open the front door he goes and stands expectantly beside my van, waiting to be taken to an exciting new place.
It has been exciting for me too. Going to a shop, the post office, or even to a routine hospital appointment has felt pretty amazing just because I could simply take myself there. I have experimented with motorways and the Clyde tunnel and, this coming Saturday, I intend to take a drive down to Sanquhar to attend this interesting event, part of Glasgow University’s Knitting in the Round project. With talks from Tom of Holland and Lynn Abrams, it looks like it will be a great day. If you see me, say hello.
Meanwhile, we are on the home strait with my book, which is now at the proof reading stage. It really is looking fantastic, and I confess to feeling a wee bit proud when I contemplate its imminent publication. It’s a reasonably substantial collection (11 different garments) and the research that accompanies the patterns has genuinely been the most interesting and stimulating I’ve ever done. I loved writing the essays and conversations, and I am really pleased with the designs – both individually and as a collection. I shall shortly begin to show you more of what I’ve been doing. After months of virtual silence about the book it will be lovely to finally show you!
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.
1: Bruce loves the beach
8. Fine weather for walking
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.
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.
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.
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.