CHAPTER TWENTY-FIVE #2
She opened her eyes at that, and he felt a momentary chill at how empty they looked. ‘I can usually sense when they’re coming. That one . . . crept up on me. Not a big one though. Not by a long shot.’
The words were laboured. Forced. And each syllable seemed to draw from more tiny reserves of energy, leaving her more exhausted by the end of her sentence than she had been at the start.
‘I thought this might happen,’ he said quietly. ‘Your joints have been hurting, you have moments where you’re just staring into space. I’ve researched autistic shutdowns. Plus, I’ve been here constantly. Messing up your routine. I should give you more space.’
But he didn’t want to.
‘I don’t want that,’ she said. ‘It’s funny. Usually seeing someone new does mess up my routine. But it doesn’t feel that way with you.’
She was so still. He waited until her breathing was a little deeper and a little more regular.
Then he moved into the kitchen and tried to improvise some dinner for her.
He found chicken stock, some noodles and a few vegetables.
He made a broth and while the water was boiling, he thought of the first episode of The Disability Track. He had it almost memorized by now.
‘Imagine if every room you went into had the lighting of a hospital and the noise level of a nightclub. Then imagine everyone else naturally speaks one language, and you have to quickly relearn that language every time you meet people. Imagine trying to fight your senses while making small talk, considering all of that. Then people lie with their body language. With their words. Only you’re too busy trying to actually make out what they’ve said, so you don’t always catch their tone.
That’s the foundation. Then put all of that into a world that doesn’t understand you and also doesn’t want to. ’
Tom looked into the blue flames of the stove.
Her words. Her way of describing her life.
He began to mix the broth together, slowly adding the noodles.
He wondered if his father had worried like this.
Felt terror like this. When his mother had been dying and his father had calmly and quietly cooked roasts and made soups.
He wondered if the acts of care and service were partly done to keep him sane. To feel useful.
Love was always a down payment on loss. It was a guaranteed cul-de-sac. A heart once handed over can only end in broken pieces. It was why so many people locked theirs away. Better to be perfectly preserved behind glass or in a safety deposit box than in someone else’s hands.
But Tom wasn’t one of them any more.
He went back to Raina, holding out a steaming bowl of noodles.
‘Don’t look so worried.’
Her words startled him, and he let out a nervous laugh. ‘Can’t help it. I want you to be okay.’
‘I’m fine. I’ll be fine.’
‘You keep saying that. Just let yourself be not fine for a bit.’
‘Not allowed.’
‘I’m insisting on it.’
‘All right, Doctor.’
Tom massaged her foot, the one closest to him, as she ate from the bowl. She let out a purr as he pressed into the arch, as he’d done in the cellar that night. ‘Does . . . shutting down make you angry?’
Her eyes met his and they were no longer empty. Now they were sad. The kind of sadness that only came out of getting back up too many times only to realize that more people had joined in trying to push you down. ‘Every time.’
He stroked her foot tenderly and her eyes closed in contentment. ‘I’m sorry.’
She hesitated before finally saying, ‘This is the part I don’t like people seeing.
The actually disabling part. I know it shouldn’t be that way; I wouldn’t dare say this on the show.
I’m terrified I’ll get burned at the stake for internalized ableism or something.
But it’s true. Sometimes, the way the world is designed makes me fall off the conveyer belt.
And it’s hard. Because I’m proud. And I don’t like people seeing it. ’
‘I’m not people.’
‘No, you’re my boyfriend apparently.’
She raised an eyebrow as she said the words and spoke with a note of reproval. Tom grinned. ‘Well, what am I then?’
‘You’re the man I’m sleeping with.’
‘We’re not just sleeping with each other right now.’
‘No.’
‘We watch terrible movies together. I feed you. I think about you all the time and worry about you constantly. I want to talk about you to everyone I meet. I bring you up in conversations with strangers. It’s a miracle I’ve managed to stop myself from doing it on live television.
On the rare occasion I don’t sleep here, I call you.
And when I hang up, the call log usually says the conversation was about four hours long. ’
‘Sounds like a you problem,’ she ribbed.
‘We’re going to your friend’s birthday together.’
‘We’re not. I have to arrive early to set up.’
‘You know what I’m saying, Raina.’
She sighed, looking at him with a serious expression. ‘After all you’ve just witnessed, you want to have this conversation now?’
‘I’ve been trying to have it with you all week. I’m not really interested in days that don’t have you in them.’
‘Pretty strategic of you,’ she said with an ache in her voice, ‘to spring this on me post-shutdown. Even though it was a tiny one.’
‘That was a small one?’
‘I’m talking, aren’t I? The bad ones can take me out for days.’
‘Is there anything you need me to do?’
She looked surprised by the question. ‘No.’
‘Who normally takes care of you?’
She laughed at the query, amused by his words. When she realized he was serious, her tickled expression bled into one of confusion. ‘You’re not joking?’
He shook his head, and Raina felt a sharpness when she breathed. Two knitting needles poked into her ribs from either side. She sat up, reaching for the glass of water.
Nobody takes care of me. And that’s fine.
Most of her adult shutdowns had taken place on public transport. The Underground mostly. Once, there’d been a bad one on a severely delayed train from Waverley to King’s Cross; she’d spent the first forty-five minutes of the journey cowering in the bathroom.
Because really, the hardest part about a shutdown wasn’t your body feeling as though it were giving up.
It wasn’t the crushing pressure. Nor the difficulty breathing, let alone speaking.
It wasn’t your irregular heartbeat. It wasn’t everything slowing down.
It wasn’t the fear or the ache or the loneliness.
It was knowing that they all thought you were weak.
‘It’s just,’ Raina spoke, with too much fatigue to mask.
Too much weariness to censor. ‘I believe what I say on the podcast. I do. I talk about loving yourself and all of the parts you cannot change. You kind of have to care for the parts of yourself that the world doesn’t like.
Those parts need it the most. And I do mean that. When I say it.’
‘But?’
‘But when you’re having a shutdown, and you’re in public because you just couldn’t hang on until home . . . I always feel this enormous sense of failure. Like, damn. There I go. The version I’ve been trying to make them see is gone.’
She could feel him staring at her and she was too raw for eye contact. She lay back on the sofa and stared up at the ceiling.
‘I’m so lucky to be self-employed,’ she whispered.
‘I can follow my own rules and routine. Be my own employer. I don’t need to beg anybody for any accommodations.
But I think of all the neurodivergent people going about their business.
In schools, offices, all of these places.
And most of them will have no idea that they’re wired differently.
They won’t have been told that’s why they find certain things challenging.
So, all of these people, thousands of them, just get up every day feeling a small stab of worthlessness.
They endure screeching commutes, office politics that they have no patience for, plus a hundred little mind games, and they don’t think, This is terrible, someone should do something about it, but instead go, I’m terrible.
I can’t handle this the way everyone else can. ’
‘You’ve been there?’
Raina would never be able to fully process how decades of feeling like a broken product had shaped her.
No, I know I look like the thing you ordered but I’m actually made a little bit differently.
No, it’s not a fault or a design flaw. No, it’s not, stop saying that it is.
It’s not. It is not. You might like me just as much as the typical product if you’d only give me a chance.
It’s not a design flaw, I swear. All right, maybe it is.
Fine, it is. If you say so. My God, just stop saying it.
But there was no design flaw. She knew that now.
‘Oh, yeah. I’ve been there. I’ve gone from “I’m nothing” to “No, I’m not. The world just needs a rewrite”. With some new types of pens.’
‘Your podcast doesn’t hand-hold. Your listeners presumably know the basics already,’ he said softly. ‘But . . . what does it feel like? Being autistic?’
She eyed him. ‘What?’
‘I want to know. For me.’
‘It’s . . .’ Raina thought about the question.
So earnestly asked. Asked with enough caring to scare her.
‘It’s like you see the rest of humanity playing a game.
All together. They’re having fun. It’s sunny.
It’s warm. You want so badly to join in.
So, you try. But you don’t know the rules.
They all do; they were taught or told. Or they learned.
Their brains are designed to pick up the rules quickly.
Sometimes, they don’t even need to be instructed.
You keep trying to join in anyhow, even though no one will tell you the rules of the game.
You keep losing, and the more you lose, the angrier they get.
More bitter. More aggressive. Being told you know exactly what’s happening.
They accuse you of losing the game on purpose. ’
She paused, her voice shaking a little too fiercely.
‘But you press on. You make so many mistakes and you can’t correct them, you see.
Your brain doesn’t have the little cog that allows you to learn automatically after one mistake.
You often don’t know what you did wrong.
You can’t run an analysis on yourself like a computer.
But if the exact scenario comes up again, you’ll choose a different option.
But life isn’t a video game or a choose-your-own-adventure.
No two things are ever the same. So, life can become one long game that you’re not great at playing.
Sometimes you’re just told to leave and never come back. ’
She closed her eyes.
‘But your brain has other cogs. Parts that they don’t have. Beautiful parts. But the game . . . it’s never about that.’
She finally met Tom’s gaze and froze at how protective he looked. She pressed her thumb against his bottom lip, forcing it into a pout to make both of them laugh.
‘You’re getting close to answering my favourite question.’
His words jolted Raina out of her vulnerability. He still wanted to know why she’d started the podcast. She considered telling him. In that moment, feeling fragile and close to breaking, she almost did.
Instead, she sat up. She placed the water glass a little too carelessly on the coffee table. Then she dropped down onto the carpet before him and crawled into his lap. He groaned as she kissed him and his hands seized her waist and slipped beneath the fabric of her clothes to touch skin.
‘You need to rest, sweetheart.’
‘It was a tiny one, I told you.’
‘I know. But I don’t want you to burn out.’
She pulled her head away from his neck to examine his handsome face. His expression was unguarded. He looked at her with such devotion it was almost painful. She stroked his bottom lip and pressed a kiss to the corner of his mouth.
‘I didn’t think anything could scare you, Tom Branimir.’
He wrapped his arms around her and pulled her snugly against him. ‘I barked at that guy in the supermarket like I bark at everyone.’
‘You don’t bark at me,’ she whispered.
‘It’s like,’ he spoke slowly, untangling the feelings in his mind with careful precision, ‘since the cancer . . . everything feels like a potential threat. I never saw Mum’s disease coming. So now, I’m this hyper-vigilant dog, sitting out in the cold, barking at the wind.’
He said it with such sad and empty bitterness that Raina squeezed her eyes tightly shut at his words, trying to fight the sudden threat of tears. She stroked the sides of his face with her fingers, aching at the forlorn look on his face.
‘You can come in now, Tom,’ she said softly. His jaw was tight with emotion but his eyes looked at her with such longing. ‘It’s okay. You don’t have to be so strong with me, honey.’
‘But how do I keep you safe from what just happened? How do I stop it from happening again?’
‘You can’t,’ she told him honestly, as he pressed kisses to her face. ‘Just be here during the storm. You can’t change the weather, but you can be the shelter.’
‘Always,’ he said hoarsely. He kissed her and then pulled away, as if telling himself that he shouldn’t. Raina put his hands on her body and kissed him herself. A soft, wet kiss full of everything she was feeling.
‘Sweetheart,’ he groaned. ‘We shouldn’t—’
‘I don’t feel like talking,’ she responded bluntly.
She wanted to escape everything and just experience herself, and him, in this moment. All of the expectations and the judgements of being a woman who was just trying to exist slipped away with each touch from him. She fell back onto the carpet and he moved on top of her.
Whatever she had with Tom Branimir, it wasn’t just a mere distraction. It wasn’t purely escape. It was something deeper.
He made her laugh. He made her come apart.
He’d reintroduced her to the version of herself she liked the very most. Her mind felt awake and appreciated, firing on all cylinders in a way it couldn’t with other people.
‘I love y—your body.’
He said the words and they were broken up with shallow breaths, as they undressed each other.
She knew what he’d really been readying himself to say.
She felt it, too.