I had my first stroke in January 1987. I had just had my second child, a daughter, by a complicated caesarean and she was about ten days old. I was twenty-seven.
Following the birth, a couple of nights after being discharged, I was in bed and saw an arm in the bed. I moved away from it but it followed and I realised it was mine. I tried to tell my husband something was wrong but I couldn't. I indicated with my other hand for a pen and my distraught husband brought me a pen and piece of paper. I tried to write a neighbour’s name (for him to ask her to stay with the children so we could go to A&E), but wrote a shaky 'happy'. My husband became even more upset but understood.
I was sent home from A&E after being told I had a trapped nerve, the hospital did not realise I had suffered a stroke. I was not able to speak properly for about three weeks, nor understand what was being said to me.
Two years later I was doing part-time nurse training and had a shock when strokes were described. I didn't recognise myself as a stroke-survivor when looking after the elderly bed-bound patients, yet the symptoms being described sounded like exactly what I had suffered. I presumed I’d possibly had an undiagnosed TIA.
Before starting training, I had a medical. After a chest X-ray I was told I had arteriovenous malformation, but it was nothing to worry about. However, I was concerned and spoke with my GP who also said it was nothing to worry about. Separately (or so I thought), I was struggling with my memory, reading, new concepts, and thinking systematically. I thought this was just the way I was made, or struggling with studying with a family. I became very organised by strict use of lists!
After qualifying, I took post-registration courses. In 2005, I started a part-time science degree. My science up to that point amounted to an ‘O’ level in Biology. Once I was advised to give up, another time I was laughed at, publicly, for spectacularly failing a maths test. It was a struggle, but I graduated with a 2.1 in BSc Hons in Biochemistry.
By 2007, I was severely fatigued, but no diagnosis was forthcoming. I collapsed at work on ITU twice and tried reducing my hours severely but ultimately it didn't work out. At this time I lost my sister to pancreatic cancer.
In 2009, I started an Open University course about how lay-people learn, understand and use science; I was always concerned about how well patients and relatives understood medical information and achieved informed consent. I struggled with the amount of reading, but I graduated in 2012 with an MSc in Science and Society.
I went to work for a charity writing patient information but was bullied out for reading too slowly. I was now unemployed for the first time in my life. My husband and I became foster carers providing respite care for autistic children. I also, with trepidation, found a part-time job writing patient information at Royal Brompton and Harefield Hospital.
In 2014, three weeks after starting, I had a second stroke. Again, I was sent home from A&E with speaking and understanding issues; they did not think I had suffered a stroke, but that I had suffered a TIA. I had also lost the ability to read completely. I was re-admitted the following day as an emergency as I deteriorated further.
This time I had speech and language therapy, and returned to work. It was very difficult because my aphasia meant I couldn't read while my colleagues were speaking, and I struggled with conversations. But I enjoyed finding the right words to make sure the information was accessible for people with low literacy levels. I was now using my own difficulties to aid my work. I had a very patient and understanding line manager who was happy with accuracy over speed.
In August 2014 it was found that I had a large pulmonary arteriovenous malformation, an extra deformed vessel shunting blood from the right ventricle of my heart to the left. Clots formed on the inside and travelled to my brain.
In 2015, while waiting for an embolisation to be carried out (at my workplace!), I had a third stroke. All three strokes were found on a brain scan. The procedure failed, and I ended up in high dependency after a serious complication. Two days later, my husband was told his cancer, diagnosed in 2011, had recurred. He needed to start more treatment. It was a very difficult time for our family.
While I was waiting for my consultant to investigate how to go forward and form a new team, I decided to try to tackle my now much worse aphasia. I have problems finding words, reading, following instructions and directions, plot lines, understanding long sentences, text messages, numbers, and passwords. I have problems with negatives so am constantly checking, and often misunderstand. Also, there’s a sharp decline in my spelling and grammar.
An author friend asked if I'd ever considered writing. I replied yes, but that I was unlikely to actually write a book. However, I started making notes in hospital, and started writing when I returned home. I was trying to repopulate my brain with words as I needed them for work! But my occupational health doctor set me straight – I would never return to work (we’ll see!) and I was retired on the grounds of ill health in 2016.
I attend a local aphasia group, ‘Speakability’, which I found by accident. We do language and math exercises, watch documentaries, enjoy outings, have a laugh, and a wonderful doctor at King’s helps me with post-stroke strategies. I kept on writing and last summer completed a story of 110, 000 words. My daughter has kindly read it and is helping me get it ready to send to publishers. Last September, my husband and I took a poetry course, and I’ve just started creative writing courses. I’ve done other courses and I do find them difficult, especially reading aloud, or presenting information, but the effort is worth it the long term.
