Portrait: Joanie and Sarah
My daughter, Sarah, was 18 and a few months away from going to Uni to study biology. While at school, she suffered a stroke during her first lesson.
A little bit about Joanie and Sarah
My daughter, Sarah, was 18 and in sixth form. She was a few months away from going to Uni to study biology. While at school, she suffered a stroke during her first lesson. She was reading a Christopher Marlowe play aloud and suddenly stopped speaking. At the time, the FAST adverts were on TV and her classmates and teacher recognized the signs and got an ambulance there quickly.
Meanwhile, I was at college where I was in the final year of a floristry course. One of the admin staff came in and said that I needed to go because my daughter had had an accident at school and had been taken to hospital. I wondered if she’d had a fall or something, I was in a daze. My tutor was great, she dropped everything and drove me to A&E. They were expecting me and ushered me in. Sarah was on a trolley being helped to sit up, she had vomit in her hair and looked vacant. The consultant was off work that day but came in when they called him. He was actually amazing and told me calmly that it was serious.
I knew nothing about strokes and assumed, like most do, that they only affected elderly people.
Sarah’s dad worked in London but got to the hospital as fast as he could and her sister, Coralie, who was at Uni in Canterbury, arrived later. Sarah had a CT scan and was put on a drip which administered a clot busting drug. She was unconscious at that point. Later in the day I went in the ambulance with her as she was blue lighted to The Royal Free in London, where we were told she might need surgery if the drugs caused a bleed on the brain.
Sarah’s recovery and managing aphasia
The three of us, Sarah’s dad, sister and myself, stayed in a hotel nearby and took turns in staying at Sarah’s bedside. When we were at the hotel we slept deeply as we were exhausted. I cried in the shower, sometimes sobbing with grief and shock. We survived on supermarket sandwiches and hotel tea. Sarah was in ICU, which was quiet and the NHS nurses were incredible. After a few days she was semi-conscious although she couldn’t walk or talk and was transferred to an adult stroke ward, which was distressing in so many ways.
Sarah had aphasia, she couldn’t speak at all and her sight was affected. She was paralyzed down the right side and couldn’t walk. Within a few weeks she could walk with a frame but her behavior was odd, at one point she wanted to try to brush her hair with a toothbrush. Aphasia was the hardest thing. She had some occupational and speech therapy in hospital but many of the images and tasks were geared at older patients, with pictures of knitting needles and hearing aids. Sarah said a few words like yes and no, but often got those mixed up. Sarah was in hospital and rehab for five months.
Being discharged was probably the hardest time. It was scary being at home. We were scared of another stroke, having to be at home full time but with lots of outpatient appointments.
Some school friends were curious and came to visit but only a couple stuck around. But we found ways of gesturing and drawing to communicate. Sarah found a few more words but couldn’t read and write. After nine months we decided to record a YouTube video so that friends and family could see how Sarah was doing and to explain aphasia. It was in the days before smart phones. I had a camera that recorded video and I balanced it on top of an upturned washing basket. We didn’t realize then that over the next few years our video would be seen by over a million people and used to train doctors and speech therapists. Fast forward and Sarah’s speech did improve although reading and writing are still hard. She has apps on her phone that help her to communicate.
Sarah had many hours of therapy including a six-week intensive aphasia course in Florida five years after her stroke. Studies have shown that intensive therapy can really help recover speech. It was expensive but we crowdfunded and friends and family chipped in. We started a support group for working age stroke survivors with aphasia, because there was nothing in our area.
Moving on with life after stroke
Sarah had a Saturday job with Waitrose before her stroke and they were brilliant. They offered her to work a few days a week and assigned a buddy to help her. They even gave her a badge that said she had speech difficulties, in case customers started chatting. University was off the cards really, everything had changed. But Sarah’s commitment and attitude was brilliant and she was very positive.
She continued to improve as she stretched the boundaries. I tried wrapping her in cotton wool and keeping her safe, but she was determined. She went part time to do some voluntary work at the school where she had her stroke and helped in the biology lab. She got the chance to do some unpaid work at Glaxo Smithkline when a manager there heard about her and wanted to give her a chance. Without a degree it would be difficult to have a career in science.
After a few years she passed her driving test. She had specialist driving lessons and extra time and assistance in the theory. Sarah had an interview, without telling me, for a job in a science lab. She got the job, which was pretty junior and challenging because of her aphasia. But she settled in well and worked hard, even though she still had fatigue. This led to where she is now, working full-time in a more senior role and producing cancer immunotherapy treatments. She recently got married and they have a house and two cats.
Aphasia will always be there, but after going through a few stages of me grieving for how things were before, I’ve grown to accept things as they are. Sarah’s Stroke was likely caused by a PFO, a hole in the heart. This was closed at Harefield in a fairly simple procedure. It seems to be a risk factor in many young strokes. Although about 25 percent of people have a PFO, it doesn’t always cause a stroke. Strangely, I rolled over in bed to reach for my phone two years after Sarah had a stroke and I tried to say to my husband ‘my arm feels funny’, but I could hear that my speech was garbled. I’d had a stroke myself. Luckily mine was fairly minor, although psychologically it was tough. I also had a PFO which was closed by the same surgeon at Harefield.
It’s no wonder that people say we are stroke survivors not victims. Surviving is good.