CHAPTER TWENTY
‘Welcome back to another week on The Disability Track,’ Raina said into her microphone, smiling brightly. ‘Today is a neurodiversity-focused episode. Shocker. But I’ll be speaking with Dr Elaine Partridge about late diagnosis.’
The interview had already been conducted and Raina was just recording the intro and the outro. She was feeling jittery for reasons she couldn’t fully label. Dr Partridge had been an incredible guest. Astute. Sensitive. Knowledgeable. Humble.
Nothing like the man who’d diagnosed Raina. Or the occupational therapists she’d seen.
Raina had been fifteen. Of course, there were multiple assessments before this particular day. Tests designed for young children. Her school were at the end of their rope, in her head of house’s words. Her parents seemed to be, too.
His name was Dr Griffin. He’d asked her every conceivable question. Some had felt intrusive. Too personal. But she’d told herself the same thing that every authority figure had been telling her for months.
The doctor knows best. Do as you’re told.
She couldn’t remember the colour of his eyes; she’d made sure never to look at them. She remembered that he always smelled of stale chewing gum. As if he’d discarded a piece that had been well-chewed just before entering the room. His hands were very hairy and he cleared his sinuses a lot.
‘Now, I’m in agreement with your mother, Raina,’ he’d said.
‘Off the record, so to speak, the label will do you no good in adult life. You’re past the age where any real support can be given.
You’ll face stigma, but also, you’ll have an excuse not to try.
And that won’t make you strong. Too many people are chasing labels these days, and it won’t change a thing. ’
The words had made Raina feel stuck inside of her own body.
The implication that she was conspiring for some kind of free ride.
It was repulsive. She was searching for answers.
For an explanation that might dress the wounds caused by bullying, isolation, exclusion and so many lunch hours spent alone.
All my life I’ve performed. I’ve never been able to just exist. I’ve never been weightless. If I unmask, I regress. If I don’t, I start to break altogether.
‘Your lack of social activity and your disinterest in making friends, along with your motor skills and processing levels, lead me to agree with our initial diagnosis. If you’re after additional support, however, I’m not sure I can recommend pursuing that.
Your support needs are far too low, and there are children who really need it. ’
Friendship. Something Raina wanted more than air.
But something that always felt impossible.
She could never outrun the disability when it came to socializing in large groups.
She always said something incorrect. Something they found off-putting.
People often asked her what was ‘wrong’ with her and Raina had never been able to answer.
Her voice had quivered as she spoke. ‘I don’t want anything. From anyone. I just needed a name.’
‘Well, you’ve got one. And listen, it might get easier when you get older. Once you’re out of senior school. Your impairment affects you in social and occupational areas and that makes school . . . uncomfortable. I appreciate that. But things might improve.’
Raina had stared at the peeling grey wall of the office. ‘Really?’
‘Yes! Lots of people like you hold down small jobs these days. Quite happy little workers, sometimes. If you can find something away from other people, you can toil away with that hyper-focus. Employers will love that. They’ll be looking for people who don’t care about making friends.’
‘I . . .’ Raina had felt as if a chord that connected her speech to her brain was finally breaking, after years of frailty.
She couldn’t recall a script that would suit in this instance.
She couldn’t put the twisting, churning feeling inside of her into words that would please this medical professional.
‘Maybe I could just be normal? Like everyone else. Now that I know.’
There had been begging in her voice.
Dr Griffin cleared his sinuses once again, managing to make it sound like a dismissal of her words.
‘You’re not going to live life like other girls your age, Raina.
Without the ability to follow cues and interact with your peers, you’re always going to be different.
They’re able to sense it. I think you know that already. ’
It was everything she’d been afraid of.
‘Now, I’m writing everything down in a document for you,’ he went on to say, speaking slowly. ‘We’ve discussed a lot of it already, but my observations and professional diagnosis will be in the report. Shall we get Mum back in?’
Her mother had needed a moment. The memory was a bad taste in Raina’s mouth. She closed her eyes, recalling what came after.
They’d been walking to the car, her mother dawdling to speak with Joyce, one of her nurse friends. Joyce was the one who’d suggested they seek diagnosis.
‘At least now you know, Meggie,’ Joyce had said in a voice full of too-sweet syrup. ‘It’s good to know what you’re dealing with, that’s what I always say. You’ve been pointing it out since she was tiny. Now you know you weren’t imagining things.’
‘I just didn’t know girls could have it,’ Raina’s mother had said dazedly.
‘You still have Solana,’ Joyce had consoled her. ‘She’s perfect, that one. Like a little doll.’
Raina stood by the car. She slid her fingers under the door handle and pulled at it rapidly, though it refused to open. ‘Can we go now, Mum?’
‘Wait, Raina,’ snapped Meggie, all warmth vanishing. ‘Don’t be rude, I’m talking.’
Raina had been reminded of those old films, where the hero was trapped in a room that was filling up with water. Where the walls were closing in, spikes coming down from up above.
She was frozen, unable to escape.
And no one was watching. Nobody cared.
She looked up and over her mother’s old Saab. On the other side of the car park, a girl was standing on her boyfriend’s feet and they were laughing while attempting a waltz. He kept kissing her nose to make her laugh harder.
They don’t feel love. Or empathy. Not the way normal people do. They’re sort of locked inside their own little world. They often won’t have room for other people.
Stupid mermaid trying to walk on land with the humans.
And suddenly Raina hadn’t been able to breathe.
She’d pulled so violently on the car door, it almost snapped away.
‘All right, all right!’ barked Meggie, marching to her side of the car. ‘For God’s sake, we’re going. It’s unlocked. Don’t have another one of your conniptions.’
Joyce and the young couple were soon far in the distance as Meggie drove from the clinic back to their house in Woodstock.
‘You’re bloody hard work sometimes,’ Meggie had said bitterly, turning her windscreen wipers on with an aggressive flick.
‘That diagnosis wasn’t cheap either. And don’t go thinking it’s going to magically give you an easy go of it.
Or an excuse. You can’t be a victim, Raina; you have to go about life the same as everyone else. ’
Raina’s tank had been empty. Her battery shot. She had nothing left to give.
‘And if you ask me,’ her mother went on, ‘I think this is a path to real unhappiness. I do. You won’t find success. And you can forget about finding love.’
‘Mum, I need to get out.’
‘Don’t be silly, we’re coming up to a roundabout.’
‘Mum, I mean it.’
‘So do I. Don’t be stupid.’
Before her mother joined the oncoming traffic, Raina unclicked her seat belt and flung the car door open.
She heard Meggie’s screams as she dashed for the adjacent field of Oxfordshire grass.
She’d panted and gasped, forcing air into her lungs as she ran towards the skyline, desperate to be alone and still.
Away from all of them.
She crashed down onto the grass when her body couldn’t go any further and she screamed. Her eyes were shut tight and her scream wore into a silent bawl. She shook. She drowned.
And she bargained.
‘Please, God,’ she breathed. ‘Please, God, I want to be like other people. Please, God, please. I’ll do anything.’
Raina hadn’t been sure if she believed in God.
She’d been removed from Sunday school for asking too many questions.
The logical part of her had always grappled with the concept.
The simplistic explanations that the teachers gave about a man in the clouds and a gate keeping people out as they stood in line for heaven hadn’t quite quenched her thirst for understanding.
What good is a heaven where there is more waiting?
Now, in this moment of darkness where she’d wanted only clarity, she begged Him.
‘Please, make me just like other people,’ she whispered into the earth. ‘Please, God, please. Just like them. Make me know what to say. Make me know how to show them I’m not all wrong.’
She didn’t know what the label meant. She didn’t know what she was. She only knew that she was so tired of speaking the same language as all of them, using the same expressions as all of them, only to be treated like an alien.
‘Please,’ she cried into the ground. ‘Please.’
She dug her hands into the grass and the soil.
She gripped the dirt of the earth and begged for rescue.
For someone to understand. For something to change.
For intervention. For something to come down from the sky and make sense of everything for her.
For a door to open and reveal that she was in the wrong story.
A mistake. One that could be quickly rectified.
I want to feel human. For once in my life. Send me something, or someone, to make me feel human.
Now, fourteen years later, Raina sat before a microphone and felt her voice catch in her throat as she tried to record. She started again, wiping at her eye.
‘Hello,’ she said, smiling a watery smile, ‘and welcome to another episode of The Disability Track with me, your hostess, Raina Lewis. I’m so thrilled to welcome a fantastic guest on today, as we focus this episode on neurodiversity.
Dr Elaine Partridge is here to discuss late diagnosis in women, and we’re thrilled to welcome her on.
Join us to discuss that incredible moment when—’
She felt her words stop as a sob threatened to break loose. She stiffened. She steadied. Then put on a beatific smile, her own dazzling stiff-upper-lip.
‘Join us to discuss that incredible moment when you get a little bit of yourself back, and start finding out who you really are.’
She was relieved that the interview was already wrapped. Relieved that she was alone in her studio.
No one saw her cry. Just as it had been in that meadow, fourteen years ago.
No one bore witness to the fragments breaking apart.