The mother locked in her body …but not locked out of love

The mother locked in her body …but not locked out of love: Paralysed in a freak gym accident, Tracey can only communicate with her eyes. But this inspirational (and gloriously mischievous) interview will humble and amaze you

  • Tracey Okines, 39, is paralysed from the neck down and is unable to speak
  • She has locked-in syndrome, so her alert brain is stuck in an immobile body
  • Her only communication method is through a colour-coded board picking letters
  • Locked-in syndrome has not stopped her from enjoying sexual relations though 

The first thing that strikes me about Tracey Okines is her capacity for mischief. I’m picking my way delicately around the question of sex and disability.

I ask Tracey, who is paralysed from the neck down and unable to speak, if intimate relationships are still pleasurable. ‘It depends on who they’re with!’ she laughs. She makes a little snort of delight that signals her amusement. It is the one emotion she can vocalise.

Tracey is conversing — incredibly — through just her eyes. She has locked-in syndrome: her alert and able brain is marooned in an immobile body; her mouth cannot articulate the words that teem through her mind. Only her face and neck retain limited mobility. But her smile still dazzles.

She communicates with a colour-coded board: every letter of the alphabet is written on a grid and given one of five colours. Tracey raises her eyes when her questioner has reached first the correct colour, then the right letter. So words are painstakingly built into sentences. ‘Some able-bodied people think it’s disgusting that disabled people have sex, but it’s a normal part of life,’ she tells me.

Tracey Okines, 39, (pictured aged 22, before her accident) is paralysed from the neck down and is unable to speak

So would she like a permanent partner or husband? ‘Of course! I’m just the same emotionally as anyone else. I don’t want to live with just a couple of cats for company until I die.’ You can tell she’s really laughing now because she spells out ‘ha, ha!’

Imagine how long it takes to talk this way. (I emailed some questions so Tracey could respond in advance.) Then consider the extraordinary labour of writing a book.

But Tracey, 39, has just completed one — taking the best part of six years — charting her life before and since the accident, 12 years ago, that caused her disability; dictating every letter through eye movements.

It is a measure of her character — active, fun-loving, joyful — that Tracey, then a nursery nurse, had her catastrophic accident while turning cartwheels at a gym club. ‘Being cocky and showing off I did them with no hands,’ she remembers.

She’d gone with her daughter Amber, then six, and a group of friends including then partner Justin, who watched horrified as she landed, not on her feet, but on her head.

The enormity of her injury did not manifest itself immediately, but that night in bed, Tracey had a fit. Because she emerged from it, apparently unscathed, Justin did not call an ambulance. The delay in summoning medical help, she later learned, worsened her condition.

Indeed, the next evening she went out salsa dancing and it was only when, later that night, she had more seizures, that Justin dialled 999.

In hospital it emerged that a blood clot had moved to her brain and caused a stroke, starving of oxygen the part of her brain that sends signals to the muscles. Amber, now 19 and an artist, says: ‘I remember waking up and my grandparents being there. They said: “Mum’s gone to hospital. She’ll be out in a couple of weeks.”

Tracey has locked-in syndrome, so her alert brain is stuck in an immobile body. She is paralysed from the neck down and is unable to speak

‘But when I saw her in hospital in a coma it really hit home. I thought: “Will she ever come out?” I went to stay with mum’s sister, my Auntie Trina. All I had with me was two of my teddies and my old Disney books. I felt I’d lost everything: my mum, my belongings, my friends.

‘The first time I visited Mum in hospital with grandad I remember thinking: “I mustn’t show how sad I am.” They told me she could hear me, so I said: “I’ll be your warrior.” I meant I’d fight for her. I was only six. Imagine being that age and having everything taken away. It teaches you that nothing really matters except the people you love.’

Although Tracey could not move, she could hear, and she remembers voices, filtering foggily through to her semi-conscious brain. ‘The surgeon told my parents that I probably wouldn’t survive the coma or, if I did pull through, I’d be a vegetable.

‘I wondered what vegetable I’d be. Maybe a carrot? I look a bit like a carrot! I’m long and skinny anyway. I was 27 and I’d had a stroke. I thought only old people had strokes.’

In the months that followed her coma, the vast scale of her disability began to hit home. She felt, by turns, resentment, anger, despair.

Dependent on others for everything and living in a care home, she felt ‘neither dead nor quite alive’.

‘Pushing the hair out of my eyes, scratching an itch, holding a book. I couldn’t do any of these simple things,’ she remembers. Most painful of all, her role as a mother was diminished, decisions about Amber’s life were made without consultation.

The only way Tracey can communicate with anyone is through a colour-coded board where another person selects the correct letters based on Tracey’s eye movements

‘I wasn’t allowed to see Amber’s sports day or meet her at McDonald’s. Social services didn’t want a child from her school to see me and pick on her because she had a disabled mum,’ she remembers.

‘I wanted to kill myself. I didn’t want to live as a disabled person. And I missed Amber so much. I was frustrated that I was not able to make decisions about my own child.

‘I couldn’t even scream in frustration. I just had to accept other people’s decisions.’

By then, Amber was in the care of foster parents — her aunt, a single mother with a son, had found looking after a troubled, anxious niece too much. ‘I was grateful to Amber’s foster carers but also very jealous,’ Tracey recalls. ‘I knew I was in no fit state to look after a child, but I still wanted to be the one she kissed good night and the one to make her feel better when she hurt herself.’

But both Tracey and Amber — young though she was — were conscious of the need to hide their sorrow. ‘I smiled whenever Amber left after a visit,’ recalls Tracey. ‘I wanted to cry as I watched my daughter leave with another woman, but I didn’t show my true emotions as I didn’t want to upset her.’

Amber remembers: ‘I did my best not to cry. I didn’t want Mum to know anything was wrong.’

Tracey said that at one point in her life she wanted to kill herself because she didn’t want to live as a disabled person

There was, however, a pivotal moment when Tracey’s despair lifted. After being rushed to hospital with a bout of pneumonia, Amber visited.

‘She bounded in and said: “I’m glad you didn’t die, Mummy,” and they were the most moving six words anyone ever said to me,’ recalls Tracey. ‘Before that, I thought it best for everyone if I wasn’t here any more.’

Those words became the title of Tracey’s book and, though Amber does not recall saying them, she still remembers the sense of relief she felt when she knew her mum was alive.

‘I loved seeing Mum,’ she says. ‘I felt such pain when she was ill and contact wasn’t possible. All I wanted to do was see her and know she was all right. I knew she gave me happiness, and vice versa. I wanted to be involved with her, to help.

‘She lived for the time she spent with me. We both gave each other a reason to carry on. I thought, “Someone wishes I was alive”.’

Amber, who lives in the north-east with her boyfriend Ryan, a writer, makes a video call to Tracey weekly and is hoping to move closer to her. She remembers her child-like efforts to ensure her visits to her mum were as much fun as possible.

‘I’d push her wheelchair to the playground. There was a roundabout with a drop end and I’d wheel her onto it. Once she almost fell off! I was only nine or ten.’

‘And she took me ice-skating once,’ Tracey recalls. ‘She pushed me round the ice rink on my wheelchair.’ ‘Weren’t you terrified?’ I ask. ‘No! I was laughing,’ says Tracey.

Amber strove to lift Tracey’s spirits. ‘I’d dance and draw and make paper aeroplanes. I could see in Mum’s face when she was happy, but what killed me was that I couldn’t hear her voice. I forgot what it sounded like. Then one amazing day, when I was about 12, she said, “I love you”.’

Tracey’s outlook on life changed when she was rushed to hospital with pneumonia and her daughter Amber rushed in and told her ‘I’m glad you didn’t die mummy’

The sound was barely recognisable to anyone but her daughter — but Amber knew the meaning; her mum was articulating the thought that had sustained her during her darkest hours.

And as Tracey got used to living in the confines of her new body, she began to test its boundaries. Her dad John, 65, a retired chef, took her swimming in the sea.

He chaperoned her to nightclubs, staying with her until the early hours. ‘Although I’m getting a bit old for clubbing now,’ smiles Tracey, who turns 40 this month.

Now divorced from Tracey’s mum Lita, 61, it is John who is Tracey’s most frequent visitor.

He introduced Tracey to the communication board that enables her to converse. ‘But don’t try using it when she’s had a few vodkas,’ he laughs. He’s sitting with us, on the terrace of the care home — Chaseley Trust, Eastbourne, in East Sussex, where she has lived for the past three years — overlooking the sea.

As she began to get used to her new life, she started to push her limits further, eventually going to the sea with her father John (pictured)

The home has encouraged her independence; her world has opened up. She’s been — before Covid — to weddings, the cinema, Glastonbury and parties.

News comes through as we chat that a bungalow, to be specially adapted for her needs, is now available. Tracey is ‘delighted’ at the prospect of this semi-independence. ‘I’ve just been offered a place!’ she spells out, exultant.

‘Being in a wheelchair will not stop me from doing anything,’ she says. She has gained enough strength in her neck to control her electric wheelchair and can now operate the TV, lights and call buttons in her room.

She can also write using a tablet which allows her to select letters on a screen by operating a button on her wheelchair with her chin.

It’s a painstaking process — a single sentence is an evening’s work — and although she wrote some of her book this way, much was dictated via her communication board to volunteer scribe Kim Adams.

Tracey has learned much from being disabled: about the triumph of hope over despair, the fickleness of some friends and the unexpected constancy of others.

Tracey now says that she loves life and asks ‘What’s the worst that can happen to me?’ Pictured: Tracey and her daughter Amber

She never again saw Justin, a friend for nine years — although they had only been together for four months when she had the stroke — after she became disabled. ‘I hated him for about a year,’ she confesses.

‘I didn’t expect him to stay around, but a note to say goodbye would have been nice.’

Today, all vestige of resentment has faded. ‘Some people can’t cope with disability. I’m used to their outlook.’

She accepts, too, that her one-time best friend, who had promised undying support, deserted her. Meanwhile former workmates have remained steadfastly loyal. Tracey calls them ‘The Crazy Gang’ and cherishes their loud and cheering visits.

She’s had a four-month relationship since she became disabled, too, with a previous boyfriend who came to see her and enveloped her in a comforting hug that led to further intimacy. ‘I’d never really thought about how a disabled person would have a romantic relationship,’ she says.

She recalls worrying, before her accident, about the ethics of having sex with a disabled person; of ensuring they didn’t feel coerced.

Tracey says that former work colleagues had stayed loyal and continued to offer her support

Now she is disabled, she knows her own mind. ‘I think people should be more educated about different types of disabilities.’

Today she sits in her wheelchair customised with fuchsia-pink cushions, her pretty face animated with laughter.

‘I didn’t think I’d ever be happy as a disabled person but I was wrong,’ she says. ‘Yes, I get frustrated and miss being able to banter, quip and tell jokes. The most difficult thing is not being able to call out to someone.

‘But I’m very glad to be alive. I’m not as stressed as I used to be (when I was able-bodied). When you lose everything, different things become important.’

What’s important now? I ask her. ‘People … and shoes!’ she laughs. (She has a particular passion for trainers.)

It is a measure of her altruism that she is giving the proceeds of her book to her local foodbank. She has also begun a novel about living with disability and is planning a sky-dive for charity.

I ask John — who is himself heroically stoic (he has cancer and a spinal disorder) — whether he will accompany her. ‘If she needs me, I will,’ he promises.

Tracey, meanwhile, is fearless.

‘I love life. You have to live it to the full,’ she says. ‘What’s the worst that can happen to me?’

I’m Glad You Didn’t Die Mummy, by Tracey Okines, is available from Amazon.

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