I’ve also had a spinal injury and a chronic disease of the arteries called fibromuscular dysplasia, and this is what caused my stroke in February 2022.  

I was on holiday in America at the time, but since I used to live and work in the USA, thankfully it didn’t feel like an unfamiliar environment. The stroke happened late at night. My plan for that evening was to practice for an online gig that I was doing. It was for one of series of housebound performances, specifically by and for people with disabilities on virtual media. Since I was practising on my own nobody else was home at the time, when I had what the start of what I thought was a migraine, but then I had an awful pain behind my eyes. Not being too tired I carried on , but while I was recording a friend noticed my lip drooping to one side when she watched the video I had recorded!

I went to bed as normal, but when I woke up I do remember feeling a little ‘vacant’. It must have looked like something wasn’t right for the friend I was with to ask me if everything was OK. I tried to answer, but the speech just wouldn’t come out! The voice in my head was telling me to do usual every day actions (like move my arms to pick something up), but when I tried to anything the actions just weren’t what I wanted or expected. I tried to reach for a cup of tea that my friend had made for me, but I couldn’t move my arm properly and then I’m told during the next moments my arm was all over the place.

My friend decided to call an ambulance. I know now I should have done this the night before, but I admit that since I was abroad I was a little worried about health insurance overseas and any potential or problematic implications with it. I remember on my way to the emergency unit deciding to remain incredibly calm. Having had a lot of other serious medical issues in my life I’d already been through a lot, so I find staying calm quite easy. I like to think I don’t sweat the big stuff.

I felt completely conscious throughout the whole experience. Symptoms came and went. Initially the paramedics noticed there had been problems with my speech and one thing I do remember is a man with a clipboard saying “It’s happening again!” when I couldn’t make my arms behave the way I wanted.

I remember being told that surgery was considered, but this carried a high risk, potentially leading to even more severe problems I was likely to lose speech and language and probably have mobility issues as a result with some of the suggested surgeries. I was just outside the 13-hour window for drug treatment to reverse the stroke, but the doctors decided to try this approach just in case it worked, and it did.

I remember believing if I kept exercising my limbs and speech then hopefully that would keep it all working. Healthcare professionals were amazed at how well the drugs worked when my stroke was classified as a medium impact stroke.

I never learned about Different Strokes at first. Initially most of the information I was given was clinical and I would have really preferred more practical advice, such as information on how to access care and carers, but really specific advice for people who were living after stroke before they were say, fifty.

After I returned home and when I needed to rest, that I remember lying in bed just worrying about work, just managing – and all the rest of problems of life that suddenly had become exacerbated. What I was doing was forgetting to live. If you’re a younger stroke survivor like me then please make sure that you don’t forget to live too.

So by the time I’m still not even fifty I’d notched up an impressive collection of challenges I’d had to face. In a nutshell:

• I had a haemorrhaging kidney when I was a child, then at age 12 I was hit by a car and fractured my femur, which led to a rare healing complication called avascular necrosis that I mentioned earlier, and so growing up I lived with chronic pain and was socially excluded from many activities. 
• At 19 I had my right hip replaced so that I was able to walk on both legs! Although, not very well, this helped my pain significantly. Then at 27, my hip replacement failed because of a faulty prosthesis, so I had a second hip replacement!
• In my mid-thirties I got a diagnosis of PTSD. It took a long time due to NHS waiting lists to get treated with EMDR (Eye Movement Desensitization and Reprocessing) but it changed my life, and gave me a complete mental fresh start. It led me to realise that I have a huge level of resilience!
• I got diagnosed with dyslexia and dyspraxia at age 42, I had always had a tough relationship with spelling and short-term memory anyway. Despite this, I managed to complete a PhD in Social Anthropology (University of Oxford) and even published a book on urban design and community resilience to the negative effects of climate change.
• Then at 45, I had my stroke due to fibromuscular dysplasia (a genetic abnormality or chronic disease of the arteries), which makes me more prone to blockages, aneurysm, bleeds and which was ultimately the cause of my stroke.

Whilst I can’t help but feel a little disadvantaged in life by all the challenges to my health, because of it I also feel very lucky (that I am naturally empathetic anyway, but) am now even more empathetic, particularly to other people with disabilities – and try to understand how they feel and I have the most wonderful collection of friends who are truly kind and giving and understanding and all have their own challenges, whether It be disabilities, dealing with refugee status, dealing with different sexuality etc., and it all helps to enrich each others’ lives through understanding. 

As a singer/songwriter and have written an album’s worth of songs – and despite my conditions, many reflecting on how my impairments have shaped my life experiences. I sing my songs and play flute in my band Jelephant who have started gigging around Scotland. Jelephant is a 6/7 piece folk-pop band with a jazzy fusion. As well as singing my own songs in English, I also sing folk songs in Icelandic, Finnish, and Sámi languages.