Stroke - it Couldn't Happen to Me

One Woman's Story of Surviving a Brain-Stem Stroke

Margaret Cromarty, Shoaib Siddiqui

• Publisher: CRC Press
• Year: 2018
• eBook ISBN: 9781315357980
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

Margaret Cromarty was a nurse who suffered a catastrophic stroke aged just 43, which left her with Locked-In Syndrome. Still paralysed even now, with the aid of an on-screen keyboard she has written this unflinching account of her treatment. It describes the frustrations of being fully aware but ignored as a person by carers unable to communicate effectively, and the painfully slow steps towards rehabilitation.It contains vital lessons for health professionals caring for victims of stroke, and for families and friends of patients. 'I learned later that the doctors expected that I would die. They made a poor attempt at concealing this expectation. They discussed me over me. I was dismayed at the negative vibes they exuded each time they came to see me. I felt that they had written me off already. Of course they can have had little idea of how their behaviour affected me. I just lay there, seemingly unresponsive, just existing, unable to enlighten them as to what was going on inside my head.' - Margaret Cromarty.

1. The day the sky fell in

It was Mothering Sunday. Our younger daughter, Elisabeth, was away at boarding school. We had no plans to see her that weekend because she would soon be home for the holiday. Our elder daughter, Elinor, was fast asleep after a late night out with friends. My mother was staying with us; I had collected her from the station the day before.

The three of us sat down for breakfast. Mum and I planned to go to church; Iain, being an atheist, wouldn’t go so he was going to write his first essay for the Open University. On the table was a beautiful bunch of anemones, the tissue paper they were wrapped in matched the blue flowers and set off the red. I was entranced. Obviously Elisabeth had dispatched Elinor to buy them on her behalf. I gave Mum her present: a scarf and a big box of chocolates.

After breakfast Mum and I set off for church, while Iain went up to the computer. It was a lovely day. I didn’t have to prepare lunch as after church we were all going to my sister’s. The service was a joint one with the church down the road but was held at ours.

We chatted for a while with our friends and then it was time for the service to begin. The children were called to the front to collect a plant for each mother and then for all the other ladies in the church. Last year Elinor and Elisabeth qualified as ladies much to their delight, each receiving a pretty plant from the children. This time, after the children had each taken their mothers a flower, Mum and I both received a lovely big primula. We all settled down to listen to the sermon.

A few minutes later the world began to spin. I was quite alarmed but it soon subsided and all seemed well. Then I began to feel dizzy again and I felt peculiar down my left side. The noise in my head distorted the wise words of the minister and I felt distinctly abnormal.

“There is something wrong with me” I hissed at my mother, while trying to sit perfectly still.

“Do you want to go out?” she asked but I replied that I didn’t dare move. I was afraid that I would fall to the left. I continued to sit very still and I kept my eyes tightly closed because the world was still jumping.

After a while, which on reflection can only have been half a minute, I became aware that my friend, who sits on the other side of the church, had come over and put her arm round me. She too asked if I wanted to go out but my mum told her that I dare not move. Meanwhile the sermon continued, but I was oblivious to it and to everything beyond my efforts not to fall over and not to be noticed. In the end, after some discussion, my mum, my friend and another friend who was sitting behind us took me by the arms and frogmarched me out to the entrance hall.

Once there we were joined by another friend who is a nurse and she, businesslike, took control of the situation. I made to sit down on one of the chairs but I was persuaded to lie along four pushed together.

“I think I am having a stroke,” I quipped, recognising the symptoms and thinking it was mildly amusing given my age – just 43 – and never suspecting it could result in anything more serious than some slight one-sided weakness for a while.

“Oh no,” was the horrified response from the nurse, “it could be lots of other things.” I had my doubts and suggested that they fetch Iain, my GP husband. My friend phoned him from the minister’s office and I lay still with my eyes closed.

Moments later Iain arrived and my friends told him the sequence of events.

“Have I got nystagmus?” I asked, still feeling objective about the whole business. The characteristic flickering of my eyes would explain why the world was jumping. Iain confirmed that I had, and quickly ran through all my symptoms.

“I think we had better go to casualty,” said Iain – I could sense the gravity of the situation from his demeanour. I did not argue. I was helped to the car and we drove off, thinking this was rather inconvenient. We had so many plans, not only for that day but also for the weeks ahead.

It did not take long to drive to the local district general hospital. We parked illegally in the ambulance bay and Iain ran in to prepare the staff for my arrival. Minutes later a man in uniform, presumably a porter, came out to the car with a wheelchair.

“How do you feel?” he said, to which I replied, “peculiar”. For peculiar it was, not unlike being horribly drunk with a left-sided list.

I was wheeled into a small room and a nurse came to see me. For the first time I heard the word CVA (which I knew to be the posh word for stroke) as the porter handed over my notes. Still I remained vaguely amused and objective about it all, discussing the goings on with my husband and even making philosophical observations about my predicament. However the large painted cartoon figures on the wall continued to do gymnastics every time I opened my eyes.

Time passed. All sorts of examinations were carried out, and an IV infusion was put up ‘just in case’. I chatted on to the nurses, doctors and Iain. After a while my speech became slurred.

“I am going off,” I observed. Although I was still feeling objective, I began to feel that this was serious, perhaps worth more than the amused consideration I had previously given it. We discussed ways of communicating if I became unintelligible. We decided on one blink for yes and two for no. That was to prove my salvation in the weeks to come.

Sometime during the afternoon I was given a brain scan; we were delighted to be told that I didn’t have a tumour or a haemorrhage – there was no mention of the clot which was the actual cause of the whole business.

Iain was beginning to make noises about sending for Elisabeth; despatching someone to fetch her back from school. He telephoned home to let Elinor and my mother know what was going on. At least I didn’t need to worry about them; my sister was bringing lunch to our house, so they would be all together and catered for, so to speak.

During the afternoon I was visited and examined by several doctors, the most notable of whom was the medical registrar. He sat down and explained how the brain is like a cauliflower, with the brain stem as the stalk. I had a clot where the stalk joins the rest of the cauliflower. This could have serious consequences.

“Will I die?” I asked, never expecting an answer in the affirmative. After a pause the doctor replied, “I must be perfectly honest; it is possible. We must wait for the stroke to evolve”. Evolve? I had no idea that strokes evolved. I thought that the damage was done and that was that. For the first time I became really worried. I might die. Inside I felt great turmoil. Outwardly I tried to be calm and matter-of-fact. Iain and I discussed the future in the event of my death. Elinor was to go to university and pursue her planned career, and Elisabeth must go ahead and sit her GCSEs, due in the summer. As for Iain, I wished that I could find it in my heart to give my blessing to him finding someone else. However, I have always been a possessive creature and even under these circumstances couldn’t bear the thought of him with another woman – so drew the line at that. Life insurance would provide the means to buy a family home when Iain left the Royal Air Force at the end of the year.

When he next suggested sending for Elisabeth I acquiesced (with a sense of foreboding) so Iain’s brother was despatched to collect her. A little later Elinor, my mother and my sister came in to see what was going on and found me leaning to the left, my speech deteriorating markedly. I began to communicate by pointing at letters written out large, spelling the words I wanted to say.

Meanwhile, a bed had to be found for me somewhere in the hospital. It was decided that I shouldn’t go to the emergency ad missions ward, as Elinor frequently worked there as an HCA, and it was deemed inappropriate that I should be one of her patients. I was sent to the female medical ward which was inhabited, it seemed, by elderly long-stay patients. It seemed that the staff didn’t know how to deal with emergencies; they were certainly ill-equipped to do so. As my condition deteriorated, or “went off” as I described it at the time, there was a lack of basic resuscitation equipment and/or the knowledge of how or when to use it. I learned later that Iain was afraid that night that I might die, not from the stroke itself, but ‘by accident’ because of the absence of adequate care on the ward

During the night, it became necessary to give me a urinary catheter because my bladder wasn’t working properly and, with Iain keeping vigil by my bedside, I got worse. By morning I was completely paralysed and unable to speak.

2. Locked-in

It is the stuff of nightmares. How often have we, as children, come out in a sweat imagining being unable to move? But this was no figment of the imagination. The only part of me which could move was my left eyelid. My eyes would move up and down but not side to side. But I was well aware of what was going on. At first there was no time to dwell on things because of the rushing around that went on.

There was a big flap because I was not breathing properly. On the way to the ambulance which was to take me to the Regional Centre I was intubated. The family came to say goodbye (not knowing if it was to be forever) and I was anaesthetised before setting off in the ambulance to the bigger hospital.

I don’t know how long it took, but I came to in the Intensive Care Unit. The rest of that day is very hazy. I was a mass of tubes and wires. There was a nasogastric tube, through which I was to be fed, and a long line into my groin, through which an angiogram had been performed, to look at the blood vessels supplying my brain. There was also an arterial line in my left wrist. Of course there was also the urinary catheter as well.

Over the next few days I lost count of the number of needles I had stuck in me. There were blood tests done, intravenous infusions resited, and after a day or two, a tracheostomy performed so that the endotracheal tube could be removed from my mouth and oxygen be passed straight from the ventilator into my airway.

This was done under anaesthetic, which was just as well because I wouldn’t have liked to have been awake for that. I might have seemed brave, putting up with all the things that were done to me, but really I had no choice. I couldn’t shout and I couldn’t flinch; I had to suffer in silence.

The episode with the tracheostomy is a good example of my experience while ‘locked-in’. I understood everything that was said. I still had opinions. I still had standards. I had fears, questions, humour, impatience. In short, I thought just as I had always done. Iain had established early on that I was ‘in there somewhere’ so we had ‘discussed’ the pros and cons of having a tracheostomy. The doctor, however, assumed that I was incapable of understanding or giving consent to the operation, so he asked Iain to give his on my behalf. This annoyed both of us. Iain became my advocate, pointing out to all comers that I was intelligent and should be treated as such, even though there would be no response from me.

We worked on our ‘code’, developing it from the eye-blink to an up/down flash of the eyes. In this way I was able to ‘converse’ with members of my family. Iain and his brother both made notices to put above my bed. One had two recent photographs of me, with the caption ‘Please remember – this is me’; the other one was a list of things I could and couldn’t do, such as ‘I can hear and understand, and I cannot move or speak’. I didn’t feel quite as much panic as I might have done as I knew that Iain and the girls believed that I was still ‘with it’ and treated me accordingly. I did however feel dreadful despair, thinking of the things that I did so easily and oh so recently. They seemed to have gone forever. People who didn’t know me tended to treat me as though the stroke had affected me mentally. I longed to put them straight with some sharp remark but, of course, I was doomed to lie silent. The nurses were very good, always addressing me as Mrs Cromarty and speaking to me as an intelligent human being but ancillary staff, such as radiographers and part-time physiotherapists, were condescending or patronising, which used to infuriate me. Perhaps the most upsetting was the attitude of the senior doctors. Was it my imagination that they shot me sympathetic glances, and muttered “tsk tsk” as they hurried past? I felt written-off. On the scrapheap at forty three.

The despair I felt knew no bounds. I had never heard of ‘Locked-In Syndrome’. But I began to hear the term used in reference to me. My mind, as quick and as ‘healthy’ as it ever had been, was ‘locked-in’ my useless body. There was no way out. I couldn’t talk, nor make a noise of any sort. I couldn’t nod or shake my head, nor gesticulate in any way. I was completely passive. If anyone said “hello”, I could only stare. It was very much against the grain but whenever anything was done for me I couldn’t say “thank you”. Neither could I shout out in pain if something hurt. I just lay like an inert lump and thought my thoughts. I became totally reliant on the nurses needing to carry out their routine tasks with me to secure their company, as I could not call for help. This was not too much of a problem in ITU, as each patient was allocated a nurse in constant attendance, but I felt particularly vulnerable as I moved on to the High Dependency Unit and later to the main ward. I would worry from visit to visit, afraid that something might happen and I wouldn’t be able to attract attention. While on the ward I used to have quite violent coughing fits, which propelled me to the edge of the bed. I would often lie in this precarious position, unable to call out, until a passer-by noticed me, when something would eventually be done.

I have been told that when I was locked-in, lying motionless and expressionless, my face was perfectly smooth. Not a line or wrinkle in sight. Smooth it might have been, but also completely characterless. My daughters have told me since that it was more through faith than certainty that they believed that I was still ‘with it’. Meanwhile my mind was racing, as it normally did. I reminded myself of a patient I nursed some years ago. I, to my shame, as sumed like everyone else that because she couldn’t move, had frequent spasms of her limbs, and didn’t speak, she didn’t know what was going on and was completely devoid of thought and feeling. The curtains were always drawn around her bed and she received the minimum necessary nursing care. She was somewhat of an embarrassment on our busy surgical ward. With horror I realised that she could well have known exactly what was going on, for wasn’t I in a similar position? I was perfectly aware of everything even though I lay seemingly lifelessly. When a gastrostomy was suggested, to put liquid food straight into my stomach, the similarity seemed complete. Despair hung over me as I imagined ending up hidden away somewhere, considered mentally ‘dead’ by everyone. Thankfully my family and friends had other ideas.

Iain devised a way for us to communicate. He would run through the alphabet and I would blink on the appropriate letter as he came to it, so that I could build up words that I wanted to say. So we could ‘converse’, albeit slowly, and thus I began to feel less isolated. I felt reasonably confident when Iain was around, and very soon also when I was with the girls. I felt that, rather than regarding me as some ‘thing’, they would take the time to find the person I had always been, still there in that useless body.

Perhaps the worst thing about my predicament was the fact that I had no control over anything. The most basic things had to be done or aided by something or someone else. Firstly my breathing was helped by a ventilator. Although I initiated each breath, the machine took over, ensuring that a proper breath was taken each time. Within a few days the aforementioned tracheostomy was performed to allow the endotracheal tube to be removed from my mouth. Feeding was taken care of through the nasogastric tube and weeks later by the gastrostomy. Waterworks were dealt with by the catheter. I needed to be turned regularly from side to side to keep my skin free from the effects of pressure. Basic nursing care such as washing and cleaning my mouth and teeth were of course necessary. In addition, I depended on others (usually nurses) to do things for me that I would never have dreamt of asking anyone else to do before, such as removing a stray hair from my eye, shaving my armpits, or changing my sanitary pad during periods. The first time that my husband cleaned inside my nose with a cotton-bud I was mortified, but as he explained, he knew I would hate to be seen with a runny nose, and of course he was right. He...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Contents
• Foreword
• About the author
• 1 The day the sky fell in
• 2 Locked-in
• 3 Live or let die
• 4 Reality and unreality
• 5 More unreality
• 6 The early days
• 7 Moving on
• 8 Improvements?
• 9 Rehabilitation begins
• 10 Food, glorious food
• 11 Eating the elephant
• 12 Happy birthday
• 13 With a little help from my friends
• 14 The home run
• 15 And now …
• Glossary