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Picture of Hayette who survived a stroke at just 34 wearing a Different Strokes fundraising t-shirt

Hayette’s Story – Ischaemic Stroke due to Subarachnoid Haemorrhage at 32

Picture of Hayette who survived a stroke at just 34 wearing a Different Strokes fundraising t-shirt

My name is Hayette and I had a severe stroke when I was 32 years old. I had a subarachnoid haemorrhage followed by an ischaemic stroke a few days later. A subarachnoid haemorrhage (SAH) is a life-threatening type of stroke, caused by bleeding into the space surrounding the brain. I later learned, about a third of SAH patients die immediately, or soon thereafter. For the patients who do survive, urgent treatment is required to seal off the aneurysms, as there is a very high risk of a second, and often fatal bleed. If I was to live and avoid terrible deficits, I would have to have urgent surgery. And, even then, there were no guarantees, which I understand is also what happened to actress Emilia Clarke.

I have no recollection of what happened to me as it is usual for the brain to forget what happened due to the bleed or urgent treatment. This is because my brain wasn’t working properly to lay down memories of my early stay in hospital. My stroke was severe because:

  • I had to go to intensive care to manage my stroke
  • I have cognitive impairments and my right toes and ankle are paralysed
  • There is damage to my brain demonstrated in my follow-up scan

It was on 15th September 2021. My husband told me that I was in a work meeting virtually and started having a severe headache. He called an ambulance who did some tests and realised it was neurological and drove me urgently to King’s College Hospital in Denmark Hill, as it was the closest one with a neurology department.

I live in South East London in Catford with my husband Lewis and our son Aidan. He was just 14 months old when I had my stroke. I was separated from him for eight long months

I used to be quite active. I used to love doing reformer pilates, which is what enabled me to have a toned and strong body in 2018 for our wedding, and also a love for it for the rest of my life. Then in 2020, our newborn son baby Aidan was born. It was both wonderful and anxious as it was so tough raising our newborn during a pandemic, with no friends or family for support . I didn’t think I had postnatal depression but definitely I had it in hindsight!

I don’t remember anything about the lead up to my stroke, but I was told that in the ambulance I needed emergency treatment. They sent me to hospital and I vomited twice in the ambulance, according to my medical records. That’s where I had a CT head scan and my diagnosis was a subarachnoid haemorrhage, a rare type of stroke caused by bleeding. There was A LOT of blood everywhere on the CT head after the subarachnoid haemorrhage, which required an emergency neurosurgical procedure called coil embolisationVasospasm is a common complication after a subarachnoid haemorrhage. I understand this is where the blood vessels become very narrow and can lead to ischemic stroke, which is what happened to me. The medical team realised that I’d had four brain aneurysms (two in the frontal artery, one in the left medial cerebral and one in the right medial cerebral). They were not big and now I’m monitored with a yearly MRA/I head scan to follow the progress. I had two surgeries; one to coil the aneurysms and another one to drain the excess fluid. The main cause for my stroke was polycystic kidney disease, which made me develop aneurysms (which is normal apparently) and is also linked to hypertension (most of my family suffers from it as well), both which caused one of my aneurysms to rupture.

After all of this, I had an ischemic stroke. I was just very unlucky. I couldn’t speak, walk and move half of my right side at all.

For this period of my life I was very confused. I had to have a small part of my hair shaved and with crust on it. The surgeons drilled a hole in my skull to insert an extra-ventricular drain (catheter) to remove the excess cerebral spinal fluid in my brain. The build-up of too much cerebral spinal fluid in the brain is called hydrocephalus in my brain. I remember not knowing why I was in hospital and each time I needed to pee, I felt like I could just get up and go to the toilet, but each time I tried I would fall on the floor – face down. 

Picture of stroke survivor Hayette in hospital

Each time, the nurses had to bring the hoist to lift me up. I was so confused all the time, not knowing why I was stuck in bed. I felt like I could just get up and do everyday life things…but I couldn’t, sadly. The medical staff had to phone my husband each time I fell late at night, probably annoying him, waking him up just to keep him informed. I felt so sad about this! I also suffer from neuro fatigue. It is mental fatigue and different from physical fatigue (feeling tired after an exercise, doing chores, etc…) But mental fatigue is different, as it’s linked to information processing like watching films or reading. I just get so tired and frustrated when people see me, even for a short time and just think that Hayette is ‘fine’. In the evening, I am so tired by everything that I did during the day, that I can’t even speak or make sense. But, with time I am improving, I can watch a whole film and not fall asleep – so I am seeing improvements! I am using strategies to manage my fatigue…taking micro-breaks, meditation and either taking short naps or just sitting doing nothing as all of these enable my brain to recharge and get more energy.

I also never feel hungry and suffer from ‘hunger loss’. I know that when I am really tired, I will eat healthy to recover and recharge my battery.

I thought I didn’t suffer from epilepsy but according to my medical records, I had seizures when I had no visitors. I am now taking anti-seizure medication for five years to reduce my risk of seizure having my role of mother for toddler Aidan. It’s a shame, but it’s better to have the extra protection against it.

I was in this hospital for about two months. That’s where I had my two brain surgeries and the neurosurgeons saved my life! I was in an induced coma for three weeks to let my small brain to recover. When my husband brought our son Aidan, I was shocked to see him as for me, he was still a baby and now he’s a dynamic toddler. I don’t remember everything or all the visitors that I had. I only remember a few key people (close family and friends) but I was unsure who they were. I was sent to an Intensive Care Unit for a few weeks to recover from the vasospam. I couldn’t say a word, but my brain was thinking constantly. I was transferred to Lewisham Hospital and stayed there for three months. At the end of December 2021, they said they found a free bed for me in a specialised stroke rehab unit at King’s College Hospital Orpington, in Kent. That’s where I learnt how to walk, eat and speak. But, I suffer from extreme fatigue and huge cognitive impairments. Parts of my brain are plainly damaged due to oxygen being blocked to them (the definition of a stroke for me). I didn’t know if I could ever go back to the person I used to be. Great friends of mine and therapists told me to grieve for my old self and define who I am evolving into. I like to call this person; Hayette 2.0. When I was discharged from this latest hospital, I was so happy but I still couldn’t even pick up my son and play with him. He became quite cold with me and it took us one year to rebuild our relationship. Straight after my discharge, I had support from the community therapists.

Collage of photos showing stages of Hayette's recovery from stroke aged just 32

I couldn’t even speak one word initially as my brain had been damaged due to the trauma. One of the areas of my brain that was damaged was the left temporal lobe, which is important for language. A lot of thoughts in my head but couldn’t even speak at all, until one day when I was in Lewisham Hospital, I said “NO” to my husband. I don’t even remember it, but my husband told me. I am glad I was able to finally speak! It was progress.

I also have a mild to moderate communication disorder with high level language and cognitive communication. l had more difficulty understanding inferences and subtleties in written and spoken language, and following complex conversations. I had difficulty giving precise explanations and expressing more complex thoughts. I had reduced facial expression and reduced intonation when speaking which made it harder for me to interact with Aidan and other people. Of course, another big issue was my confidence. My voice used to be monotonous and lacked intonation and because of this, I couldn’t even read bedtime stories for my son. I also had reduced facial expressions, especially on the right side of face.

I tend to make a lot of mistakes in both English and my mother tongue French. I mainly struggle with “word finding” when there is a word for something, but I just don’t know it. I can’t translate between the two languages either. I also tend to make mistakes with masculine and feminine pronouns. I should know them as these exist in my mother tongue in French. But most importantly, I struggle with pronouns in expressions such as “go to” and “go for” and their meanings. Now I just laugh about it.

Though I may seem fluent and articulate, I may need slightly more time to articulate ideas than previously. I never feel articulate though. I have a lot of thoughts in my head, but I can’t find the right words to tell….which has impacted my confidence.

But it’s improving, thanks to a lot of Speech & Language Therapy (SLT) sessions. I would like to say a big THANK YOU to Norma Fender who taught me how to speak with intonation and finally read bedtime stories to my son.

Initially, I just thought I was just stupid, even retarded, but no; it was due to just having had a severe stroke! I owe everything to the Brain Injury Clinic I was at, I didn’t understand at the time what I had , but their team is just amazing. I needed to chase them every other day to get answers, but I did it!

Having a stroke and in three different hospitals for a period in total of eight (long) months completely wiped my confidence. I had to rebuild it gradually. I don’t even know if I would be able to be as before. I tend to doubt myself a lot and undermine my capabilities. I tend to always double check with someone if this is OK or not. But, I’m assured it’s normal.

I had to learn how to eat with cutlery and even hold a pen and write.

I used to think I was deaf…literally deaf. But, no, I just suffer from problems with attentional hearing. When there is background noise, I can’t focus on one thing. It helps when people speak to me and ENUNCIATE so I can understand…but that’s improving as well.

I need clear and concise instructions for everything…even for cleaning! For instance, how was I going to clean a table? Just use water and a cloth? What I was thinking was what is needed for the temperature of the water and which type of cloth, a normal cloth? a microfibre? or a sponge? I just laugh about it now! My beautiful broken brain…same happened for cleaning the rest of our flat.

Recovery is TOUGH and requires a lot of patience and managing the extreme frustration. Doing all the physiotherapy exercises was the only thing that I could control – and so I did them – and I kept doing them, again and again – the same with writing. My handwriting has changed but it’s OK as long as it’s legible! My right ankle and toes are paralysed but doing the physiotherapy exercises enabled me to get my small muscles to have a flicker. My goal is to be able to move them and eventually to be able to drive in the UK. I have done some research (thanks to Different Strokes) and will be having Functional Electrical Stimulation to wake up these muscles and stimulate them to move again.

Another biggest pain point for me is cognitive impairments. I often just feel stupid, sometimes all the time it seems. I have poor attention, processing speed, problem solving and flexibility. I had to take a cognition test and actually my strengths are that my intellect is intact (I’m not stupid YAY!) and strong verbal memory (using my strategies). My weaknesses are Information Processing (it can take me longer to process any information and I am visual so reading something is better for me) and Executive Functions, especially in terms of attention, shifting quickly between things and complex problem-solving/planning. Because of those, I have been suspended from work without giving me a deadline, so I am constantly living in UNCERTAINTY. I initially felt depressed by this, as my professional identity was at my core. I know we will have to sell our flat and leave London, but we can’t plan it until we know what my professional situation will be.

I also experience a lot of frustration from all the back and forth I’ve had with health specialists. Each time I went to see one specialist, they referred me to another one! I just feel like a pinball within the neurology health system. But on the bright side, because of this experience, I got stronger and good at chasing!

After stroke, we can all evolve into a new person and it’s the best period to define who this ‘new person’ is: you can take up new hobbies. Thanks to my amazing friends, I took up new hobbies. The hardest part was re-discovering what the new Hayette still likes compared with what the previous Hayette used to like. And, it’s true! I took up an Adult Learning program: Art History and I still love Art and made some friends. I also started doing some gardening sessions, thanks to my wellbeing coordinator and I like it.

But that doesn’t mean I will give up on my life. I just need to adapt my life to cater for my new “hidden” disabilities. Alongside having the right strategies and tips, I will be able to live my life fully as Hayette 2.0. I owe everything to my family, friends and exceptional therapists.

I would say to other young stroke survivors to keep moving – take baby steps (just getting up in the morning is a first step!) – and easier said than done, being able to manage frustration when people see you and just assume you’re fine, when you might now be. Just go above these people and elevate yourself above them…I still struggle with this one. You are stronger just for being alive! Positive reinforcement! Stay positive. When you can’t do something…just reframe it with the magic word ‘YET’. I can’t do it ‘YET’.

And, I would say please do not rush into going back to work without knowing exactly what happened to you. I thought I knew, but actually I didn’t. I thank my acquired brain injury nurse consultant John Ling for this. He explained everything to me and has been very patient with me in this period of confusion. THANK YOU!

If you could put across one key lesson from my story I would say that learning to be patient is the key

I came across Different Strokes from my husband and my community Speech & Language therapist. I have joined a few monthly catch-ups through videoconferencing. I also received an amazing Family Support kit to provide my son with more details about what happened to me and why I was in hospital. It was so hard to only see him and my husband at the weekend, once per month. Aidan is still too young to read and really understand but once he will be older, it would be a perfect thing for him to read. 

 I also decided to do the March On challenge, which I thoroughly enjoyed. It enabled me to keep moving and raise a little bit over £1,000 for DS. I have also taken on the challenge to abseil the ArcelorMittal and raised over £300. I was so scared but, I was buzzing afterwards! My plans are to leave London eventually as we cannot afford to live here anymore and leave the hustle and bustle of it for something quieter, ideally surrounded by greenery. I’d also love to go on a vacation with my family my husband Lewis and our son Aidan. 

Learn new skills such as public speaking and digital media. I still use social media but I don’t know YET how it works. Everything can be learnt.

If you’ve recently had a stroke my advice is to take it slowly. You are a warrior for just being alive. You are going to be amazing in this adventure. Focus on the positives and make “mini celebrations” like I do when I manage to tidy up my own bed.

I feel like a toddler feeling stupid most of the time and having to discover the whole world on my own. I can relate to my toddler son as he had to learn how to walk, talk and do most activities. He’s my source of inspiration. I love you so much Aidan Wilkinson. I would also like to thank my husband Lewis Wilkinson for pushing me over and beyond to make me evolve and do some experiments and discover the world on my own.

I would like to thank my amazing friends, you know who you are. I would also like to say a massive THANK YOU to Emma Yeeh (community occupational therapist ), Elizabeth Doward (neurophysiotherapist) and the amazing Darya Kalinin and Cilem Hussain (psychologists) and many others who have helped me – gold stars to you all!

The legal definition of a disability in the UK is a physical and or mental impairment that has a substantial and long-term effect on your ability to carry out daily activities. Stroke is the leading cause of disability, making me disabled. At the beginning I didn’t like it to be labelled as “disabled” but actually it’s fine as it’s full of different opportunities. It’s just difficult saying that you’re disabled when it’s invisible! I can talk (not very articulately) and walk, so people think that I am normal… and actually I am – and my ‘new normal’.

Your donation helps others like Hayette on their journeys

There are 100,000 strokes in the UK each year with 1 in 4 happening to somebody of working age or younger. Different Strokes aims to promote independent stroke recovery and help these younger stroke survivors reclaim their lives.

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