Paralysed mum with locked-in syndrome has written an entire book using her eyes
A mum with locked-in syndrome, who was left paralysed after a cartwheeling accident, has written an entire book using her eyes.
Tracey Okines, from Hastings, tore an artery in her neck while performing a gymnastics stunt.
The accident, which happened in 2008, caused a blood clot at the base of her brain and put her in a coma for five months.
For over a decade now Tracey has been living with locked-in syndrome, which means she is only able to move her eyes and has learnt how to communicate with a colour-coded board.
Despite not being able to move, Tracey is completely conscious, with the ability to think, see and hear.
Over the past six years, the 39-year-old has been busy writing a book – using her eyes to select every individual letter.
The book, which is called I’m Glad You Didn’t Die Mummy, was released in May and is named after a sentence her daughter, Amber, said to her when they were reunited after her accident.
Proceeds from book sales are being donated to Tracey’s local food bank, to ease the demand as a result of the pandemic.
At the time of her cartwheeling accident, Tracey didn’t even realise she had suffered an injury.
Totally unaware, Tracey carried on with daily life while the blood clot was depriving her brain of oxygen. She suffered a stroke a few days later.
Tracey was then taken to hospital, but it was too late as the section of her brain which sends signals to her muscles had died. After being in a coma for five months, she was diagnosed with locked-in syndrome.
Following years of rehabilitation, Tracey has finally regained enough movement in her neck and has begun writing using a tablet. The device is built with software which allows her to select letters on the screen, by using her chin to press a button attached to her chair.
This also means she is now now able to go out independently, as she able to drive her wheelchair.
Speaking through her communication tablet, Tracey said: ‘When I was first diagnosed I didn’t know anything about disability, and all the information I found was negative.
‘It is really not as bad as people may think. I wanted to help people to know what it is really like to be disabled.
‘The way people see the disabled is changing for the better.
‘Remember that disabled people are just human beings whose health has gone wrong.’
Writing in her book, Tracey explains that it’s frustrating when people try to guess what she’s saying before she’s finished.
She says: ‘Over time I’ve learnt all the tricks which people use not to communicate with me.
‘Some people avoid looking at my eyes. That way they can just say, “Oh, I didn’t notice.”
‘There are the people who ask me questions and they don’t even look at me when I answer.
‘There are the people who are impatient: they only let me say a word or half a sentence, then they simply presume that they know what I’m talking about.
‘There are the people who take one look at the letter board and run off saying that they can’t do it – I think, “You haven’t even tried.”‘
‘There are people who try to guess a word. When someone guesses loads of times on one letter, saying one sentence can take forever. It is much quicker to just let me spell what I want to say.
‘A lot of people would talk to me very loudly and slowly as though I was a bit deaf or stupid. I am neither.’
Tracey is currently living at The Chaseley Trust care home in Eastbourne – where she has been for three years. She is on a waiting list to live in her own home, which will be adapted for her needs so she can live independently – with the help of visiting carers.
She added: ‘I’d love to be better, but I know that I will never be the person I was before. I don’t want to live in a care home for the rest of my life, but I know I will need someone to care for me.
‘For over a decade now I have been living with Locked-in Syndrome. At first I hated it and I wanted to kill myself, but I’m glad that I stayed alive.
‘I found my health improving and I’m now doing things that I never thought I’d be able to do.’
I’m Glad You Didn’t Die Mummy is available to buy on Amazon.