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I felt overwhelmingly tired at my son’s swimming lesson. Thirty minutes later I was in a coma

I was a fit mum and marathon runner, until a catastrophic stroke at 42 left me ‘locked in’ my own body

Kate, now 44, lives in Rotherham with her husband Adam, 47, and their 10 year old son Stanley 
I suddenly felt overwhelmed with fatigue while watching my son’s swimming lesson. It was a regular Thursday evening in December 2021 and as Stanley, then seven, practised his front crawl, I grew increasingly hot, irritable and sleepy.
Once Stanley was dressed I drove as quickly as I could back to our home in Rotherham, by then an intense pain at the back of my head had kicked in. “I really don’t feel well,” I told my husband Adam, heading straight to bed confused by how vacant I felt. 
Those five words to my husband turned out to be the last I would ever utter in my “normal” voice. Within just a few minutes I was lying on the bed unable to move my arms or legs. I was gasping for breath and heard a sort of gurgling, rattling sound – before realising I was making it.
I’ll never forget Stanley’s anxious face standing over me – or his little voice calling out to me, telling me he loved me. This was all happening to me as if I wasn’t really there; like I was a fly on the wall watching this horror unfold. The last thing I remember is an unfamiliar voice – the paramedic – calling my name.
And my next memory was waking up in Rotherham hospital. It was all very blurry; I couldn’t move my body, I couldn’t speak and I couldn’t even move my head or eyes properly: I was completely trapped inside my own body. I felt like I was “buzzing” so if someone were to touch me they’d get an electric shock.
I caught a glimpse of my fingers – swollen like purple sausages – and my head felt as if it were being crushed in a vice. There were vivid dreams and hallucinations so it was impossible to know what was real and I convinced myself the nurses were taking me into the hospital basement at night. I couldn’t communicate with anyone and I could only catch parts of certain words that made no sense, things like… “induced coma” and “four days”. 
What I would slowly come to understand was that doctors were not sure if I’d survive, and that they’d thought it very likely I’d be in a vegetative state. So when I woke up, no one even knew whether I was in there. My body lay motionless yet inside I was screaming. 
It was two days until nurses realised I could move my eyes up and down – when I was told to lift them up for “yes” and down for “no”. They asked if I knew Adam and Stanley’s names. Those tests felt like a lifeline – I could finally prove I was in here. And I could finally ask what the f— was going on?
I’d suffered a massive bleed in the pons area of my brainstem, Adam explained, which is known in technical terms as “acute pontine haemorrhage”. The chances of surviving a “pontine stroke” like mine are small, and the catastrophic effect of it had left me with locked in syndrome (LIS). Doctors had advised Adam to prepare to say his goodbyes the night I was admitted, but the next morning, when they reduced my sedation, I had coughed because of the ventilation tube in my throat – a sign that I was responding positively. And this is how I found myself here.
“A stroke?” I remember thinking. I couldn’t have had a stroke; that only happens to older people, or smokers, or people who drink too much. I was pretty fit, a healthy 42 year old. I’d once been a fitness instructor, I’d ran several marathons and in 2013 I’d helped set up our local Parkrun. How had this happened to me – and why?
An MRI didn’t really find any certain cause. It was suggested that I might have been born with a faulty blood vessel which just happened to burst after an unusual spike in my blood pressure, yet I’d never had issues with my blood pressure before. I’d wondered if it was potentially Covid-related, as I’d had a bad case of the virus six weeks earlier, but I’m reluctant to dwell on that because of the conspiracy theorists. I’ve had to accept that I simply don’t know.
Once the staff were aware that I was cognitive I was given a communication chart, a laminated A4 page with letters to enable me to to spell out words using my eye movements. It was painfully laborious, yet it felt great to be able to tell people how I felt, using more than just yes or no. But I’d drive Adam mad by spelling out unnecessarily long sentences, such as “would you mind lowering my bed please”, instead of simply “lower bed”. It just felt important to be able to express myself using the language I would usually use, as well as not lose my mind with frustration and boredom.
It was all too easy to make mistakes using the chart, however, so I quickly memorised the pattern, and Adam – realising I had done this – did the same. This made our “talking” more fluid while, over many months, I battled hard to claw back some form of life.
The rehabilitation process after a life-changing trauma like mine takes a long time. And it’s still ongoing. I’ve felt like screaming and screaming and giving up frequently – but with Adam and Stanley to think about quitting was never an option. Every ounce of energy has been spent trying to get this body of mine moving. 
I was in hospital for five months, then a specialist neuro rehab facility for six more. I had to relearn everything – walking, talking, even swallowing and breathing. I finally moved back home in October 2022, and it was a major achievement going back to phased working hours in summer last year. I’m a public health specialist for the council, working mainly on initiatives to get people active. Yes, the irony. I remind myself that the benefit is I can now bring my own lived experience to the role. I’m passionate about furthering research into why strokes happen through charities like Our Future Health. 
Adam had kept a little tally on a chalkboard in the kitchen for each of the 316 days after the stroke until I came home. He has been an incredible husband, but of course our relationship has dramatically changed since he’s become my carer. He works full time at the Department for Work and Pensions (DWP) as well as doing everything for me and Stanley. We have to spend so much time together that we no longer have the space (or break from each other) that couples need, so that naturally means we can bicker. There might be times when my instinct is to ignore him for a bit, but I can’t, as I’ll then need to text him upstairs to ask him to take me to use the loo, or wash me or dress me. That rather changes the dynamic of a marriage.
Neither of us were prepared for how we’d live this new life, we’ve just had to muddle through. The hardest thing is seeing how Stanley naturally turned to Adam when he needed things, and as the mum, that didn’t feel natural. But I am so grateful for their love and support. I would not be here now without them. And there is nothing more motivating than hearing your nine year old cheer you on: “Come on mum, you can take that step!” Well, how can I not give that effort 100 per cent?
I can walk small amounts with a frame and a Functional Electrical Stimulation (FES) device for my foot, and I have some good movement in my arm. I’ve still got a very long way to go, but I’ve got use of my left side back, and my voice (it’s not quite the old one, but that’s OK). 
I had to grieve my old life, and accept that I couldn’t go back and make it “unhappen” – I had to just move on. I can’t run Parkrun any more, but I can still help with the admin and go in my chair sometimes to feel part of something so close to my heart. Who knows, one day I might perhaps be able to walk part of it again. I have to keep trying, hoping and remembering to enjoy my life as it is now. Staying present and not dwelling on the past is all I can do. I have to feel lucky to still be here.
As told to Susanna Galton
Our Future Health is the UK’s largest health research programme, designed to help everyone live longer and healthier lives. Find out more at ourfuturehealth.org.uk
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