A mother of a child with locked-in syndrome wrote an entire book with just her eyes after being paralyzed when she landed on her head while cycling.
Tracey Okines, 39, of Hastings, East Sussex, tore an artery in her neck while doing stunt at the gym, causing a blood clot at the base of her brain, and spent the next five months in 2008 in a coma.
Former kindergarten teacher and model Tracey woke up unable to move anything but her eyes – and eventually had to learn how to communicate with a color-coded blackboard.
She has spent the last six years writing her real life story – carefully selecting each letter with her eyes – entitled "I'm glad you didn't die, Mummy" – that's hers 19-year-old daughter Amber, then six, said when they were reunited for the first time after the accident.
Tracey Okines (pictured), 39, of Hastings, East Sussex, wrote an entire book with just her eyes after being paralyzed when she landed a wheel on her head
Tracey (pictured) tore an artery in her neck while doing a stunt at the gym, creating a blood clot at the base of her brain, and spent the next five months in 2008 in a coma
Although Tracey, who has lived in nursing homes across the country for more than a decade, is unable to care for her daughter, she said she was never close to her family, including Papa John, 55.
The proceeds from the book sales, published in May and available on Amazon, will be donated to Tracey's local food bank to help ease demand as a result of the pandemic.
Speaking through her communication tablet, which she uses with her chin, Tracey said, “When I was first diagnosed, I knew nothing about disability and all the information I found was negative.
WHAT IS A LOCKED SYNDROME?
Locked-in syndrome is a rare brain disorder that causes complete paralysis of all voluntary muscles except those that control eye movements.
People are conscious but cannot speak or move. Your cognitive function is usually affected.
Locked-in syndrome is caused by damage to the brain stem, which contains nerves that carry information to other parts of the body.
Such damage usually occurs due to a lack of blood flow or bleeding after trauma.
Patients cannot chew, swallow, speak, or move, but apart from their eyes they can see and hear.
Most of those affected are bedridden and dependent on their caregivers.
Treatment focuses on relieving the underlying disorder, such as: B. Bleeding if possible.
Patients may need tubes to breathe.
Small tubes are also inserted into the stomach for eating and drinking.
People can be taught to communicate through their eyes.
Source: National Organization for Rare Disorders
“It's really not as bad as people might think. I wanted to help people know what it is really like to be disabled. The way people see disabled people is changing for the better.
"Remember, disabled people are only people whose health has deteriorated."
She added, “I've lived with locked-in syndrome for over a decade. At first I hated it and wanted to kill myself, but I'm glad I stayed alive.
"I've found my health improving, and now I'm doing things I never thought I could do."
Thanks to relentless rehabilitation, Tracey has finally regained enough movement in her neck to move a head-operated chair, giving her the first impression of freedom in a decade.
She spoke her first word after the accident – "Father" – five years ago and is determined to find her voice.
Tracey, then 27, was a healthy and active single mom to Amber who worked as a kindergarten teacher and did some modeling on the side.
But in January 2008 she ended up with a bike on her head in the gym and first laughed at it with a buddy.
But the accident had cracked an artery in her neck and caused a blood clot at the base of her brain.
Tracey went about her daily life completely unsuspecting, but the blood clot deprived her brain of oxygen and she suffered a stroke a few days later.
She was taken to the hospital but it was too late and the part of her brain that sends signals to the muscles had died.
Tracey woke up in the hospital after being in a coma for more than five months and was diagnosed with locked-in syndrome.
The rare neurological disorder is total or near total paralysis of all muscles in the body except those that move the eyes.
In the early stages of her disability, she struggled with mental health problems.
Tracey wrote in her book: “Before my accident, I took everything for granted, especially my health. I thought that would never happen to me.
“This happens to other people. I never thought that I would experience this in my life. & # 39; After a few months, I began to see the world more clearly and reality hit me hard. I realized that the world I once loved was gone. & # 39;
Former kindergarten teacher and model Tracey (pictured with her mouth painting) woke up unable to move anything but her eyes – and eventually had to learn how to communicate with a color-coded blackboard
She has spent the last six years writing her real life story – carefully selecting each letter with her eyes – entitled "I'm glad you didn't die, Mom". In the picture Tracey after the accident in the hospital
Tracey even had to see daughter Amber go and live with loved ones because she could no longer take care of them.
Initially, Tracey could only move her eyes, but within a year she began showing positive signs when a nurse helped her make tiny movements with her arms.
Since then, hard rehab work has helped her regain some facial movement and use of her neck. This means that she can now go out on her own because she can drive her wheelchair.
Tracey was even on the train to see Amber, who is now studying fashion and design at Durham College.
Tracey's father, John, said they've grown even closer since the diagnosis: “It was incredibly difficult to see Tracey going through this, it would evoke a lot of emotion.
Though Tracey, who has lived in nursing homes across the country for more than a decade, is unable to care for her daughter, she said she was never closer to her family, including Papa John (pictured together).
“Sometimes I would drive back to see her and suddenly I had tears in my eyes and had to drive by. This is my daughter you know This is my baby.
“She started making little noises in the first year of her illness, and now she practices privately all the time. She has a voice there – now when I am not in the room she will call me. The first time she said "Dad" I almost passed out! & # 39;
Tracey began talking to a "communication board" by selecting a group of letters that a nurse would read out loud so she could move her eyes to indicate her choice.
More recently, as her neck movement has improved, she has started writing with a tablet. It has software that allows her to select letters on the screen by pressing a button on her chair with her chin.
Gradually she can build letters to form words and sentences.
Tracey (aged 16) began talking to a "communication board" by selecting a group of letters that a caregiver would read aloud so she could move her eyes to indicate her choice
That's how she wrote the book – she started with her communication board, then switched to her chin-powered tablet as her neck movement improved.
She wrote in her book about how frustrating it is when people try to guess what she's saying before she's done.
"Over time, I've learned all of the tricks people don't use to communicate with me," she said. Some people avoid looking into my eyes. That way, they can just say, "Oh, I didn't notice."
“There are people who ask me questions and who don't even look at me when I answer. There are people who are impatient: they just let me say a word or half a sentence, then they just assume they know what I'm talking about.
& # 39; There are people who take a look at the letter board and run away and say they can't – I think, "You haven't even tried".
“There are people who try to guess a word. If someone guesses a letter many times, it can take forever to say a sentence. It's much faster to let me spell what I want to say!
“A lot of people spoke to me very loudly and slowly, like I was a little deaf or a little stupid. I'm not one. & # 39;
If this story affects you, you can call the Samaritans on 116 123 or visit www.samaritans.org.
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