‘Locked-in’ mum writes entire book using just her eyes to communicate

A ‘locked-in’ mother who lives at Chaseley has written an entire book using her eyes after she was left paralysed when she landed on her head while doing a cartwheel.

Friday, 18th September 2020, 11:16 am
Tracey Okines with her father John Okines. Photo: John Okines/ SWNS SUS-200918-110958001

A ‘locked-in’ mother who lives at Chaseley has written an entire book using her eyes after she was left paralysed when she landed on her head while doing a cartwheel.

Tracey Okines, 39, tore an artery in her neck while performing the stunt in the gym, causing a blood clot at the base of her brain, and spent the next five months in a coma.

Former nursery nurse and model Tracey woke up unable to move anything apart from her eyes, and eventually learned how to use a colour-coded board to communicate.

Tracey Okines in a coma. Photo: John Okines/SWNS SUS-200918-110947001

Tracey has lived at Eastbourne’s Chaseley Trust for the last three years. She was born and brought up in nearby Hastings.

Despite being unable to care for her daughter Amber, 19, Tracey said she has never been closer to her family, including dad John, 55.

And thanks to tireless rehabilitation, Tracey has finally regained enough movement in her neck to move a head-operated chair, giving her the first taste of freedom in a decade.

She spoke her first word after te accident - ‘dad’ - five years ago, and is determined to find her voice.

Tracey Okines. Photo: John Okines/SWNS SUS-200918-111009001

Tracey has spent the past six years writing a book - by painstakingly using her eyes to select each letter - called ‘I’m glad you didn’t die Mummy’.

Released in May, the proceeds of the book sales will be donated to Tracey’s local food bank to ease the demand as a result of the pandemic.

The title of the book is the sentence her daughter said when they were reunited for the first time after the accident.

Speaking via her communication tablet, which she operates using her chin, Tracey, said, “When I was first diagnosed I didn’t know anything about disability, and all the information I found was negative.

Tracey Okines painting. Photo: John Okines/SWNS SUS-200918-111020001

“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.”

Tracey, then 27, was a fit and active single mum to Amber, then six, working as a nursery nurse while doing modelling work on the side.

In January 2008, she landed on her head doing a cartwheel at the gym and initially laughed it off with a pal.

But the accident had caused a tear in an artery in her neck, causing a blood clot at the base of her brain.

Totally unaware, Tracey went about her daily life, but the blood clot was depriving her brain of oxygen and she suffered a stroke a few days later.

She was taken to hospital, but it was too late - the section of her brain which sends signals to the muscles had died.

She woke up in hospital after more than five months in a coma and was diagnosed with Locked-in Syndrome.

The rare neurological disorder is a complete, or near-complete paralysis of all the muscles in the body except those which move the eyes.

She is completely conscious, with the ability to think, see and hear.

In the early stages of her disability, she battled mental health issues.

Writing in her book, Tracey said, “Before my accident I took everything for granted, especially my health. I thought this would never happen to me.

“This sort of thing happens to other people. I never imagined that I would experience this in my lifetime.”

“After a few months I began to see the world more clearly and reality hit hard. I realised that the world I had once loved had gone.”

Tracey even had to see daughter Amber go and live with loved ones, as she was no longer able to look after her.

Initially all Tracey could do was move her eyes, but within a year she was showing positive signs, as a carer began to help her make tiny movements with her arms.

Since then, hard rehab work has helped her to regain some facial movement, and the use of her neck.

This means she can now go out independently, because she is able to drive her wheelchair.

Tracey has even been on the train to see Amber, who is now studying fashion and design at Durham College.

She is also able to eat normal food too for the first time in years and is learning to speak again.

Tracey’s father John said they have become even closer since she was diagnosed.

He said: “It has been incredibly tough to see Tracey go through this, it would bring out a lot of emotions.

“Sometimes I’d drive back from seeing her, and I’d suddenly be in tears and have to pull over. That’s my daughter, you know? That’s my baby.

“She started making small noises in the first year of her illness, and she practices all the time in private now.

“She’s got a voice there – now, when I’m not in the room, she’ll call me.

“The first time she said ‘dad’, I nearly fainted!”

Tracey began using a ‘communication board’ to talk, by selecting a group of letters, which are then read out by a carer, so she can move her eyes to indicate her choice.

More recently, as her neck movement has improved, she has began writing using a tablet. It has software which allows her to select letters on the screen, by using her chin to press a button attached to her chair.

Gradually she can build up letters to form words and sentences.

This was how she wrote the book - she started with her communication board, and then moved onto her chin-operated tablet as her neck movement improved.

She wrote in her book about how frustrating it is when people try to guess what she is saying before she is finished.

“Over time I’ve learnt all the tricks which people use not to communicate with me,” she said.

“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.”

She moved around the country and lived in several different care homes, but has been at The Chaseley Trust care home in Eastbourne for three years.

But she is now on a waiting list to live for her own home, which will be adapted for her needs so she can live independently, with the help of visiting carers.

John said she’s likely move in the next six months.

Tracey 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.”

The book is available on Amazon.