The aboriginal affair that strikes me about Tracey Okines is her accommodation for mischief. I’m acrimonious my way cautiously about the catechism of sex and disability.
I ask Tracey, who is paralysed from the close bottomward and clumsy to speak, if affectionate relationships are still pleasurable. ‘It depends on who they’re with!’ she laughs. She makes a little snort of contentment that signals her amusement. It is the one affect she can vocalise.
Tracey is conversing — abundantly — through aloof her eyes. She has locked-in syndrome: her animate and able academician is ashore in an anchored body; her aperture cannot clear the words that abound through her mind. Alone her face and close absorb bound mobility. But her smile still dazzles.
She communicates with a colour-coded board: every letter of the alphabet is accounting on a filigree and accustomed one of bristles colours. Tracey raises her eyes back her questioner has accomplished aboriginal the actual colour, afresh the appropriate letter. So words are agilely congenital into sentences. ‘Some able bodies anticipate it’s abominable that disabled bodies acquire sex, but it’s a accustomed allotment of life,’ she tells me.
Tracey Okines, 39, (pictured age-old 22, afore her accident) is paralysed from the close bottomward and is clumsy to speak
So would she like a abiding accomplice or husband? ‘Of course! I’m aloof the aforementioned emotionally as anyone else. I don’t appetite to animate with aloof a brace of bodies for aggregation until I die.’ You can acquaint she’s absolutely bedlam now because she spells out ‘ha, ha!’
Imagine how connected it takes to allocution this way. (I emailed some questions so Tracey could acknowledge in advance.) Afresh accede the amazing labour of autograph a book.
But Tracey, 39, has aloof completed one — demography the best allotment of six years — charting her activity afore and back the accident, 12 years ago, that acquired her disability; dictating every letter through eye movements.
It is a admeasurement of her appearance — active, fun-loving, blithesome — that Tracey, afresh a nursery nurse, had her adverse blow while axis cartwheels at a gym club. ‘Being arrogant and assuming off I did them with no hands,’ she remembers.
Only the bodies you adulation absolutely matter
She’d gone with her babe Amber, afresh six, and a accumulation of accompany including afresh accomplice Justin, who watched abashed as she landed, not on her feet, but on her head.
The abomination of her abrasion did not apparent itself immediately, but that night in bed, Tracey had a fit. Because she emerged from it, allegedly unscathed, Justin did not alarm an ambulance. The adjournment in summoning medical help, she afterwards learned, worsened her condition.
Indeed, the abutting black she went out salsa dancing and it was alone when, afterwards that night, she had added seizures, that Justin dialled 999.
In hospital it emerged that a claret array had confused to her academician and acquired a stroke, craving of oxygen the allotment of her academician that sends signals to the muscles. Amber, now 19 and an artist, says: ‘I bethink animate up and my grandparents actuality there. They said: “Mum’s gone to hospital. She’ll be out in a brace of weeks.”
Tracey has locked-in syndrome, so her animate academician is ashore in an anchored body. She is paralysed from the close bottomward and is clumsy to speak
‘But back I saw her in hospital in a blackout it absolutely hit home. I thought: “Will she anytime appear out?” I went to break with mum’s sister, my Auntie Trina. All I had with me was two of my teddies and my old Disney books. I acquainted I’d absent everything: my mum, my belongings, my friends.
‘The aboriginal time I visited Mum in hospital with grandad I bethink thinking: “I mustn’t appearance how sad I am.” They told me she could apprehend me, so I said: “I’ll be your warrior.” I meant I’d action for her. I was alone six. Imagine actuality that age and accepting aggregate taken away. It teaches you that annihilation absolutely affairs except the bodies you love.’
Although Tracey could not move, she could hear, and she remembers voices, clarification foggily through to her semi-conscious brain. ‘The surgeon told my parents that I apparently wouldn’t survive the blackout or, if I did cull through, I’d be a vegetable.
Sex? It depends on who it’s with
‘I wondered what vegetable I’d be. Maybe a carrot? I attending a bit like a carrot! I’m connected and angular anyway. I was 27 and I’d had a stroke. I anticipation alone old bodies had strokes.’
In the months that followed her coma, the all-inclusive calibration of her affliction began to hit home. She felt, by turns, resentment, anger, despair.
Dependent on others for aggregate and active in a affliction home, she acquainted ‘neither asleep nor absolutely alive’.
‘Pushing the beard out of my eyes, abrading an itch, captivation a book. I couldn’t do any of these simple things,’ she remembers. Best aching of all, her role as a mother was diminished, decisions about Amber’s activity were fabricated afterwards consultation.
The alone way Tracey can acquaint with anyone is through a colour-coded lath area addition actuality selects the actual belletrist based on Tracey’s eye movements
‘I wasn’t accustomed to see Amber’s sports day or accommodated her at McDonald’s. Social casework didn’t appetite a adolescent from her academy to see me and aces on her because she had a disabled mum,’ she remembers.
‘I capital to annihilate myself. I didn’t appetite to animate as a disabled person. And I absent Amber so much. I was balked that I was not able to accomplish decisions about my own child.
‘I couldn’t alike scream in frustration. I aloof had to acquire added people’s decisions.’
Her accomplice and best pal both larboard her
By then, Amber was in the affliction of advance parents — her aunt, a distinct mother with a son, had begin attractive afterwards a troubled, afraid niece too much. ‘I was beholden to Amber’s advance carers but additionally actual jealous,’ Tracey recalls. ‘I knew I was in no fit accompaniment to attending afterwards a child, but I still capital to be the one she kissed acceptable night and the one to accomplish her feel bigger back she aching herself.’
But both Tracey and Amber — adolescent admitting she was — were acquainted of the charge to adumbrate their sorrow. ‘I smiled whenever Amber larboard afterwards a visit,’ recalls Tracey. ‘I capital to cry as I watched my babe leave with addition woman, but I didn’t appearance my accurate affections as I didn’t appetite to agitated her.’
Amber remembers: ‘I did my best not to cry. I didn’t appetite Mum to apperceive annihilation was wrong.’
Tracey said that at one point in her activity she capital to annihilate herself because she didn’t appetite to animate as a disabled person
There was, however, a cardinal moment back Tracey’s anguish lifted. Afterwards actuality rushed to hospital with a bender of pneumonia, Amber visited.
‘She belted in and said: “I’m activated you didn’t die, Mummy,” and they were the best affective six words anyone anytime said to me,’ recalls Tracey. ‘Before that, I anticipation it best for anybody if I wasn’t actuality any more.’
Those words became the appellation of Tracey’s book and, admitting Amber does not anamnesis adage them, she still remembers the faculty of abatement she acquainted back she knew her mum was alive.
‘I admired seeing Mum,’ she says. ‘I acquainted such affliction back she was ill and acquaintance wasn’t possible. All I capital to do was see her and apperceive she was all right. I knew she gave me happiness, and carnality versa. I capital to be complex with her, to help.
‘She lived for the time she spent with me. We both gave anniversary added a acumen to backpack on. I thought, “Someone wishes I was alive”.’
Amber, who lives in the north-east with her admirer Ryan, a writer, makes a video alarm to Tracey account and is acquisitive to move afterpiece to her. She remembers her child-like efforts to ensure her visits to her mum were as abundant fun as possible.
‘I’d advance her wheelchair to the playground. There was a ambagious with a bead end and I’d caster her assimilate it. Already she about fell off! I was alone nine or ten.’
‘And she took me ice-skating once,’ Tracey recalls. ‘She pushed me annular the ice amphitheatre on my wheelchair.’ ‘Weren’t you terrified?’ I ask. ‘No! I was laughing,’ says Tracey.
Amber strove to lift Tracey’s spirits. ‘I’d ball and draw and accomplish cardboard aeroplanes. I could see in Mum’s face back she was happy, but what dead me was that I couldn’t apprehend her voice. I forgot what it articulate like. Afresh one amazing day, back I was about 12, she said, “I adulation you”.’
Tracey’s angle on activity afflicted back she was rushed to hospital with pneumonia and her babe Amber rushed in and told her ‘I’m activated you didn’t die mummy’
The complete was almost recognisable to anyone but her babe — but Amber knew the meaning; her mum was articulating the anticipation that had abiding her during her darkest hours.
And as Tracey got acclimated to active in the borders of her new body, she began to analysis its boundaries. Her dad John, 65, a retired chef, took her pond in the sea.
He chaperoned her to nightclubs, blockage with her until the aboriginal hours. ‘Although I’m accepting a bit old for clubbing now,’ smiles Tracey, who turns 40 this month.
Now afar from Tracey’s mum Lita, 61, it is John who is Tracey’s best common visitor.
He alien Tracey to the advice lath that enables her to converse. ‘But don’t try application it back she’s had a few vodkas,’ he laughs. He’s sitting with us, on the terrace of the affliction home — Chaseley Trust, Eastbourne, in East Sussex, area she has lived for the accomplished three years — overlooking the sea.
As she began to get acclimated to her new life, she started to advance her banned further, eventually activity to the sea with her ancestor John (pictured)
The home has encouraged her independence; her apple has opened up. She’s been — afore Covid — to weddings, the cinema, Glastonbury and parties.
News comes through as we babble that a bungalow, to be distinctively acclimatized for her needs, is now available. Tracey is ‘delighted’ at the anticipation of this semi-independence. ‘I’ve aloof been offered a place!’ she spells out, exultant.
‘Being in a wheelchair will not stop me from accomplishing anything,’ she says. She has acquired abundant backbone in her close to ascendancy her electric wheelchair and can now accomplish the TV, lights and alarm buttons in her room.
She can additionally address application a book which allows her to baddest belletrist on a awning by operating a button on her wheelchair with her chin.
It’s a assiduous action — a distinct book is an evening’s assignment — and although she wrote some of her book this way, abundant was dictated via her advice lath to advance book Kim Adams.
Tracey has abstruse abundant from actuality disabled: about the celebration of achievement over despair, the fickleness of some accompany and the abrupt abidingness of others.
Tracey now says that she loves activity and asks ‘What’s the affliction that can appear to me?’ Pictured: Tracey and her babe Amber
She never afresh saw Justin, a acquaintance for nine years — although they had alone been calm for four months back she had the achievement — afterwards she became disabled. ‘I hated him for about a year,’ she confesses.
‘I didn’t apprehend him to break around, but a agenda to say goodbye would acquire been nice.’
Today, all evidence of acerbity has faded. ‘Some bodies can’t cope with disability. I’m acclimated to their outlook.’
She accepts, too, that her ancient best friend, who had promised constant support, bare her. Meanwhile above workmates acquire remained deeply loyal. Tracey calls them ‘The Crazy Gang’ and cherishes their loud and auspicious visits.
She’s had a four-month accord back she became disabled, too, with a antecedent admirer who came to see her and belted her in a abating hug that led to added intimacy. ‘I’d never absolutely anticipation about how a disabled actuality would acquire a adventurous relationship,’ she says.
She recalls worrying, afore her accident, about the belief of accepting sex with a disabled person; of ensuring they didn’t feel coerced.
Tracey says that above assignment colleagues had backward loyal and connected to action her support
Now she is disabled, she knows her own mind. ‘I anticipate bodies should be added accomplished about altered types of disabilities.’
Today she sits in her wheelchair customised with fuchsia-pink cushions, her appealing face activated with laughter.
‘I didn’t anticipate I’d anytime be blessed as a disabled actuality but I was wrong,’ she says. ‘Yes, I get balked and absence actuality able to banter, badinage and acquaint jokes. The best difficult affair is not actuality able to alarm out to someone.
‘But I’m actual activated to be alive. I’m not as fatigued as I acclimated to be (when I was able-bodied). Back you lose everything, altered things become important.’
What’s important now? I ask her. ‘People … and shoes!’ she laughs. (She has a accurate affection for trainers.)
It is a admeasurement of her altruism that she is giving the gain of her book to her bounded foodbank. She has additionally amorphous a atypical about active with affliction and is planning a sky-dive for charity.
I ask John — who is himself heroically aloof (he has blight and a analgesic disorder) — whether he will accompany her. ‘If she needs me, I will,’ he promises.
Tracey, meanwhile, is fearless.
‘I adulation life. You acquire to animate it to the full,’ she says. ‘What’s the affliction that can appear to me?’
I’m Activated You Didn’t Die Mummy, by Tracey Okines, is accessible from Amazon.
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