This love story starts with a girl who collapsed on a Brighton street and a boy who took a bus using a borrowed £1 which would later save his life. Simon and Becki lived in different corners of the country. They both had a stroke when they were young. They overcame disappointments and both had to learn to live with newly-acquired disabilities. Years later, they would meet by chance and fall in love. Becki’s stroke: 2 February 2011
Becki Cobb was 21 in 2011 and about to start her final term at university. She had just returned from a visit to Paris to see a friend and decided to walk to her part-time job at a clothes shop in Brighton.”It was a beautiful sunny morning, but after 20 minutes I started to feel really light-headed. I had an apple in my bag, but as I tried to bite into it I dropped it and then fell onto my knees and I just couldn’t get back up. “I felt like I’d fainted but I was conscious.”She was found by two policemen who were concerned how unwell she looked, but Becki kept telling them she had to get to work. They said they would take her, but only if she was able to get into the car by herself. “I couldn’t open the door. My left-hand side was getting paralysed so it was getting very weak and all my muscles were stopping. I remembered lying on one of their laps because they were saying ‘you need to keep talking to us’ but I was just so tired.”The policemen told me I was saying things that didn’t make sense but in my head I was talking perfectly coherently.”
An ambulance was called and Becki was in hospital within 20 minutes, but her memory remains blank until 22:00 that night. She has relied on other people to fill in the gaps.The hospital contacted her parents in Lincolnshire and told them to get there quickly because it was not known if Becki would survive. The medical staff were mystified. Although Becki was showing symptoms of stroke, they held back from that diagnosis because, at 21, she would have been unusually young to have one.To rule it out, they called-in a consultant on her day off. When she examined Becki, the consultant confirmed the medical team’s original thinking. It was a stroke. Simon’s stroke: 3 November 2004
Simon Commins was 17 and studying for his A levels in Chester in 2004 with plans to be an engineer. He skipped class early that afternoon to get to his job as a swimming pool lifeguard.He decided he’d go to the gym before his shift and borrowed £1 from a friend to pay for a bus ticket. He says that, at the time, he wasn’t aware the pound would save his life – had he been penniless and forced to walk, he may not have been near anyone who could help him when he needed it. Just before he reached his stop, Simon began to feel light-headed.”It was as if there was a loss of conscious control. The second I stood up my legs felt really heavy, every step felt like I was getting heavier and my vision was getting quite bad.”
He got off the bus and made his way to a wall outside an Army careers building. He sat down and tried to call his Dad but his vision was so bad he couldn’t see the keypad and kept dialling the wrong numbers.”I started to panic. I put my bag down on the floor and laid down and tried to go to sleep because I couldn’t figure out any other way to get out of the situation.”Inside the recruitment building, two men were watching Simon on CCTV and went out to ask if he was ok.”I couldn’t respond because the stroke was affecting my speech. I managed to write the word “ill” on a piece of paper and they called an ambulance.”Medical notes
At 21 and 17 Becki and Simon were unusually young to have a stroke. It was determined that Becki’s was caused by a blood clot which passed through a hole in the heart between the two upper chambers which had failed to close as normal when she was growing up. The resultant hole is known as a patent foramen ovale (PFO). Little did Simon know, but the daily nosebleeds he’d been having were a sign that he had a genetic disorder called Hereditary Hemorrhagic Telangiectasia (HHT). This stops some blood vessels from developing properly and they build up with blood, known as arteriovenous malformations (AVMs). These AVMs were in Simon’s brain where they ruptured, causing a haemorrhage and stroke. According to brain injury charity Headway, about 130,000 people are admitted to hospital each year in the UK with stroke – about 300 of those are aged under 25.Warning signs include face drooping, difficulty in lifting the arms and slurred speech. It can also include a sudden, intense headache, dizziness, vision problems and confusion.Becki: ‘I was paralysed’
Becki spent 48 hours in intensive care, five weeks in hospital and four weeks in rehabilitation. She still has physio every two weeks which keeps her “ticking along”.”I had to learn how to walk again. I was paralysed down the left side so I had facial drop. I suffer fatigue still and, at the beginning, my friends would come and visit me and I’d just fall asleep.”Becki still can’t use her left hand and struggles to walk – sometimes a few steps around her London flat is all she can manage – “I do still make a few improvements, but it is a lot slower.”At the time, the stroke was a surprise, but when she looks back, Becki thinks the signs may already have been there.
She had begun to experience dizziness when she leaned her head back. And on the day she returned from her trip to Paris, she went to the pub with friends where she believes another symptom may have shown itself.”I had half a cider and got really drunk, really, really drunk. I was thinking I shouldn’t be drunk like this, but you can’t go to the doctors and say ‘I’ve had a cider and I feel drunk’.”Less than 24 hours later she was in hospital. Simon: ‘I didn’t really know who I was’
Simon spent four weeks in hospital. He had lost 25% of his eyesight and his cognitive behaviour was impaired. He has aphasia – difficulties with language – and finds it hard to plan and remember tasks.”My personality changed when it happened. I didn’t really know who I was anymore in terms of my identity. I felt like I didn’t have one and I needed to build that up again.”Simon says that, after the stroke, he became more aggressive because he was frustrated by the situation and, to add to this, the aphasia had taken away his ability to voice an opinion. “At the beginning, even if I thought of something, words got lost at the point of speaking. Physically, I could do everything that I could before, but cognitively I was way behind. This was the time when I felt the most alone.”
The extent of the situation didn’t fully hit home until the night he returned from hospital and found he wasn’t able to read his five-year-old brother’s storybooks. He realised this was the very low level at which his reading would have to start again. Simon spent months working hard at his reading, writing and talking and says his brain has now re-wired itself to communicate using language.”My brain continues to improve,” he says. “However, instead of saying exactly the right words, it skirts around the topic as close as possible.”Doctors have been keeping an eye out for further AVMs, the malformations which caused that initial hemorrhage. He has since had surgery to remove others – two craniotomies and a radiation beam – but it’s a continual worry that more will develop.Bad timing
As well as having to come to terms with their new bodies and work on their recovery, they were also at that crucial point in their lives when they needed to shape their futures. At this stage, however, they still did not know each other.While friends and peers went out to work and socialise, Becki and Simon were left to contemplate what they should now do.”People were starting to move on with their lives and I wanted to be like them and have choice. I felt like a disabled person who didn’t have many options other than trying to overcome something I’d never planned for,” Simon says.He reapplied for his lifeguarding licence and returned to sixth form 10 months after the stroke. He ditched maths and physics and chose instead to study business, geography and IT at A-level. Despite nearly giving up and failing the first round of exams, he secured good grades. Simon went on to study construction at college and then at university. He was provided with an assistant to take notes for him in lectures and recorded everything so he could listen to each lecture several times. It worked. He graduated and started work as a quantity surveyor. A different student life
Becki returned to Brighton University eight months after her stroke to complete her media course part-time, but lived a very different student life to the one she had experienced before.”You expect that when you come out of hospital you’re better, but I was using a wheelchair and a walking stick when I was 21 and it’s quite a big deal. I couldn’t leave the house without help. You definitely feel disabled.”Becki’s occupational therapist said she would only be able to return to university if she used a power-assisted wheelchair. Unhappy with the prognosis, Becki defied those expectations and returned to university with a manual wheelchair. She moved in with four friends who she described as “amazing”. “They used to take me to physio and make sure that, if they were going to the pub, they’d get me there as well.”But some of her friendships, the ones based more on parties and socialising, drifted away and her priorities changed. She focused more on her work and recovery and graduated with a first class degree. “It was hard,” she says. “But it just meant planning and having that network of people who were willing to say ‘you’re going to do this and we’re will help you’, I don’t think I could have done it without that.”
She saw this as a success, but some things had to fall by the wayside. Becki had volunteered at a radio station with ambitions to become a producer, but after her stroke she said she was “terrible” at it.”I found it much harder to concentrate – I would copy the wrong CDs, play the wrong clips and make mistakes on my audio editing. It was too much for my brain to handle.”Becki and the station management came to a mutual decision that it wasn’t working as well as it once had, and they parted company. “It was really hard because it was something that I loved but you have to let things go if they’re not right and find something you are good at or can do better than before.”While Becki had now ruled out becoming a radio producer, she stuck with media and found a job working on BBC drama productions. A chance meeting
Becki and Simon had been through a lot. They were in their 20s and were still in the recovery stage. They were also just about to meet each other completely by chance.Nearly two years had passed since Becki had been hospitalised when a friend’s dad arranged a raffle at his workplace to raise money for a stroke charity and invited Becki to collect the cheque. It was the same company at which Simon worked.Simon hadn’t taken any notice of the raffle when it happened, but was having a break when Becki needed a rest. “I got shown around the building and at the end of it I needed to sit down,” Becki says. “They took me into this little room and Simon was sat there and we started talking and he just said ‘I’ve had a stroke too’.”I’d met people my age who’d had strokes but it was all through support groups – to meet someone coincidentally and get on so well, it was just crazy.”
After Simon’s unexpected revelation she clumsily responded, “you don’t look like you’ve had a stroke”, the one cliche phrase she hated when people said it to her. Simon saw past the comment and quickly forgave her.She says: “It started with something in common, then it just grew and became very flirty. It was very mutual.”Becki told Simon it had been almost two years since she had her stroke and he surprised her by suggesting they should go out to celebrate it. He took Becki and two female friends out for dinner in London. “The two girls said it was like being on a date with us,” Becki says. “It was just from there that we clicked.”
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“If he hadn’t taken me out for dinner to celebrate we might not be where we are today.”They continue to mark their stroke anniversaries with dinner or a weekend away and always give each other a card. For Simon too, meeting Becki was the first time he’d really come across anyone of a similar age who was also adjusting to life after a stroke. He admits he had felt quite alone until she came into his life – he liked her but was hesitant about acting on it.”At the time I was a bit unsure what kind of relationship we’d have because we’d both experienced something traumatic and I didn’t think it was right, considering everything we had experienced, for it to end in tears.”They took their relationship slowly, but became closer and found their strengths and weaknesses complemented each other.My other half
Simon looks after the practicalities within the relationship – he cooks and cleans – while Becki concentrates on life admin and helps Simon with his memory.The couple recently bought their first home in west London and while Becki kept the budget under control, Simon did the physical work.He says: “Becki sometimes helps fill the gaps in my language at night when I am tired, and I struggle to remember home-related things – household-bills or which drawer my socks are in.” Becki appreciates the way Simon can do the practical things that she can’t, and says: “The only thing he’s not patient with is when I drop things, and I drop things all the time. He calls me Calamity Cobb.” From being able to explore a new city on holiday through to “taking the recycling out together”, Becki says They treat each other as if they haven’t got disabilities and expect a lot of each other.
“I think we could be with people who hadn’t been through [a stroke],” she says, “but we balance out and we know the impact of it emotionally.”Though she admits she no longer feels “invincible”, Becki says there have been positive changes inside her since that day in 2011. “It’s made me a much more understanding and patient person. Perhaps even kinder too. Now that I’ve met Simon I wouldn’t change it for the world.”Simon and Becki’s determination not to be defined by their strokes has seen them face another challenge – writing a book together.HiddenInMe records their experiences and memories and offers advice to others in a similar position. They took it in turns to write different chapters, and edited each other’s work.Simon says: “Having a timeline written down is a way to remember some of the positive and negative outcomes as a result of it. “Plus, I wanted to do something I would have never thought of doing before my stroke.”It can seem like the worst thing in the world but we wanted to show there are successes after it – we found our jobs and we found each other.”
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Source: BBC Sussex