'I thought it was 1998 and I was being used for experiments.' King's Lynn stroke survivor shares story in new charity campaign
A Lynn woman has told how a stroke left her believing she was living in 1998 and was having experiments done on her.
Stevie Carver has learnt to walk, talk and read again after a stroke two years ago that left her unable to recognise her own son.
And she has shared her story as part of a new campaign by the Stroke Association, which seeks to emphasise the importance of giving hope to patients facing the challenge of rebuilding their lives.
Stevie, 38, fell ill in February 2018 when she collapsed after suffering a major bleed on the brain, known as a haemorrhagic stroke.
Doctors gave her just a two per cent chance of surviving the first night and she spent a week in an induced coma.
She said: “When I had my stroke, it felt like someone was stabbing me in the head - I was screaming. I’ve never felt pain like it and that’s the last thing I can remember.
“I honestly had no idea where I was when I woke up. I thought it was 1998 for some reason. I was terrified as I thought I’d been kidnapped and was being experimented on, so I was trying to pull the tubes out of my body.
"I refused to cooperate with the doctors or my own family. I recognised my daughter but I was shouting at my son saying, ‘You’re not my son, I don’t know you’.”
“I really did lose all of my social skills. I had zero control over my emotions – I was so angry at everyone and everything and I feel like I upset a lot of people by how I was speaking to them but they’ve all forgiven me now.”
Although Stevie still struggles with her memory, fatigue and some cognitive functions, she is now able to walk independently and has learned to read and speak all over again.
She said: “I was beyond devastated after my stroke and I thought my life was over, I can’t put into words how upset I was.
"I would just lie there in the hospital bed sobbing but then one day I decided, ‘I want more than this, I want my life back’.
“I knew I wanted more than this and I would have to fight harder to get it. Now I honestly feel like I’ve been given a second chance at life - rather than angry I feel so incredibly lucky to be alive.
"Anything that goes wrong day to day now I just think, ‘it’s really not that bad’ I’m still here and it’s amazing that I am.”
Stevie's story is at the heart of a new Hope After Stroke campaign, which is being launched by the Stroke Association today.
The charity says its survey of more than 1,000 stroke survivors found that around 85 per cent of them were told that their recovery would be limited to the first year after leaving hospital, with fewer than one in 10 being told they would continue to recover for years afterwards.
Its chief executive, Juliet Bouverie, said the findings were "shocking" and warned they were likely to have worsened still further as a result of the coronavirus crisis.
She said: "It can be demotivating and soul destroying, when we know evidence is to the contrary. It makes our job harder but even more important.
“We know that stroke survivors cling onto even the smallest glimmer of hope. This is what powers them on to achieve what many thought would be impossible.
"I’ve heard so many stories of remarkable people making recoveries even 20 years after their stroke.
"This survey was conducted before the pandemic and while shocking then, it’s likely to have become worse as people’s fears of coronavirus and not wanting to burden the NHS overtake their hopes. Hope is the bedrock to rebuilding lives.”
Marion Walker, Emeritus Professor of Stroke Rehabilitation at the University of Nottingham, said that, although the quickest recovery takes place in the days and weeks immediately after a stroke, patients can continue to improve for months or years afterwards.
She added: "Whilst it is important to be honest with stroke survivors, we need to ensure that we are presenting them with the facts to ensure they maximise their recovery.
"Despair may seem like a natural reaction to the stroke but it is so important that we as professionals work with our patients to show them that a meaningful and full life is possible.
“All too often we hear of individuals being discharged from hospital into a vacuum of care, knowing little of the available services or how to access them.
"I know how much pressure our health care system is under with Covid-19, and that’s why it’s important that charities like the Stroke Association can be there for everyone affected by stroke.”
More information about the campaign can be found at www.stroke.org.uk/hope