Odd Girl Out

by Laura James

  Suddenly everything feels lighter. We’re still the same people. I’m the same as I was before my diagnosis and we’re not the sort of couple that allows each other to get away with spouting pompous nonsense about finding our best possible selves.

  ‘It will be all right, Boo,’ he says. ‘You just need to stop obsessing and realize that – diagnosis or no diagnosis – this is who you are.’

  I think about this in the long taxi ride up the hill back to the hotel. Tim’s arm is across my shoulder. He looks what I think is content in the arc of headlights streaming into the car. I’m confused. This doesn’t have to be who I am. I can be different. Better. Less scared. I can be fixed.

  Tim is saying that I am who I am and nothing is going to change me. But at the same time he is trying to make me be a different person. He is wrong. What is the point of therapy if it doesn’t make me less autistic? I say nothing, but I want to ask him how I can be myself when he gets so irritated by the things I do.

  I want to ask whether he would be OK living with the kind of fear I feel much of the time. I want to know how he would feel if he were incapable of feeding himself three meals a day. I want to know how he would cope with not knowing what emotion he was experiencing. I want to know what it would be like if it took him hours to psych himself up to do something as simple as run a bath. How he would cope when inertia sets in and whole days can be lost sitting on the sofa trying – and failing – to make a slice of toast and butter.

  I live with an all-pervading fear of the future. Of what the next five minutes hold. The next five hours, five days, five years. I panic almost hourly about what will happen when the children leave home or how I will cope with growing old in a world that doesn’t understand me. Tim just lets life happen around him. I cannot carry on doing this. I have to fight back. It’s me against autism and I have to win. Defiance rises in my chest.

  We turn into the hotel car park and moonlight fills the interior of the taxi, bathing it in a silvery sheen. I can’t read the expression on Tim’s face as he pays the driver and then smiles at me. Is it sympathy? I will show him he’s wrong. I will show him that I can beat this. This time next year I’ll be a different person. Of that I am sure.

  I feel a slight chill as I wonder whether he will want to stay the course.

  CHAPTER TWO

  September 2015

  The holiday is over and England feels grey and dreary. I want to hold on to the slightly soporific feeling I get when I’m away but – as is always the case for me – I feel it fizzle out as soon as I enter the arrivals lounge of a British airport.

  My head is woolly from the Valium I took to cope with the flight. Flying triggers physical and emotional issues for me. It is rare I can board a plane without experiencing a full-blown meltdown. In the past I have refused to board, gripped by a black panic. On other occasions I have made it to my seat only to find that an additional demand placed on me – the announcement of a delay, an insensitive flight attendant, or a strange noise coming from somewhere inside the aircraft – sends me scrambling for the nearest emergency exit. Usually, but not always, Tim or one of the flight crew eventually manages to talk me down and I slump into my seat and endure the flight in total silence.

  The reasons are hard to pin down. Layered over my usual claustrophobia is a sensation of wrongness. Inside the pressurized metal tube, the air tastes different. Sounds are deeper and more painful. My eyes feel dry, my vision blurs, breathing is harder, my centre of balance shifts and I feel dizzy. My heart rate speeds up as I tense against the next sensory assault. Words no longer work in soothing me. Even my special interests bring no comfort.

  I turn instead to rituals. It is they that persuade me onto a plane. They are the same each time I fly. As I climb the stairs to the aircraft, I feel compelled to touch one of the metal rivets to the left of the door. I have no idea why I do this. It became a habit more than a decade ago and I feel uncomfortable at the thought of not doing it. The compulsion isn’t an OCD-type ritual. I don’t believe the plane will crash if I don’t do it. Rather, I would just spend the entire flight experiencing a nagging sensation that something had been left undone.

  Throughout any flight I have to hold my boarding pass. It remains in my left hand. Permanently. The paper becomes damp, creased. The ink smudges. Putting it down is not an option.

  From take-off to landing, I am almost exclusively non-verbal. Speaking feels too hard, so I do it only if I really have to. Questions from the flight crew or offers of drinks or food are met with a shake of my head. Tim stopped trying to engage with me in this context many years ago. Sometimes he’ll put his hand on the back of my head or on my knee. I assume he thinks this is reassuring. It isn’t, but it would feel unkind to tell him, so I don’t.

  I’m not afraid of flying in the usual sense. I don’t fear a crash. I don’t worry the plane will burst into flames or disappear from the radar never to be seen again. I’m not afraid of the aircraft. I’m afraid of myself. Feeling different is so intense that I worry what it might do to me.

  The sense of relief I experience when the wheels hit the tarmac and the plane bounces along is immense. Something lifts. If, however, we have to wait on the plane for any length of time before the doors open, I become agitated. Waiting is a painful state, and never more so than when trapped in this way.

  As Tim and I wait for the shuttle bus to take us to the car park, I imagine what it will be like next year when I am fixed and can fly without any issues at all. Right now, however, I am consumed by the bad feeling. It’s worse each time I have to transition from one situation to another.

  The bus stop is crowded. A workman’s road drill is torture. A child is crying. The sound reverberates around my head and hurts my ears. There’s a siren in the distance. Its insistent scream makes me feel as if I should be doing something to calm it. I’m missing the routine of being away. I want to be sitting by a pool. Reading. Silent.

  Even tiny transitions hurt. The change that comes with the end of a weekend makes me feel wobbly and unsure. Monday mornings arrive too quickly and I’m gripped by a sense of apprehension, a tightness in my chest, a feeling of impending doom. There is no logic to it. I know things are no more likely to go wrong on a Monday, but because the weekend offers two days of relative calm – of not seeing or speaking to too many people – the difference is measurable.

  Temple Grandin, author of a number of books including Thinking in Pictures, once said: Fear is the main emotion in autism. That is certainly true for me. Everything new I encounter – even if it is simply the beginning of another week – is seen through the prism of fear. I constantly question what might go wrong: today, tomorrow, next week, in six months. What impact will a decision I make now have on the future? What if I say something wrong to someone, or write something incorrect in an email? What if I forget to pay a bill or don’t write the correct time for a meeting in my diary? What if suddenly I’m found out? If people realize that I’m pretending to be something I’m not. A grown-up. A proper person.

  There’s no instant cure for this fear, but I can distract myself with work and slowly, as I lose myself in writing a feature or get caught up in arranging an interview, it subsides. Little by little until it is at its usual level. The one I have grown comfortable existing alongside. Sometimes I imagine what it must be like not to wear the weight of fear like a winter coat. I wonder if others feel a lightness I will never experience.

  I can feel a certain calm on holiday, but the closest I have ever come to experiencing true peace are the seconds before falling under the blanket of a general anaesthetic. I have had a lot of surgery over the past few years and I get through the natural anxiety by remembering that feeling. I’ve learned to fight against the drugs, to stay with the feeling as long as I can. It is when I feel most at ease and afterwards it can sustain me for weeks: knowing that it is possible for me to feel unafraid.

  Arriving back from holiday, then, feels like Monday morning times a hundred. The long drive home fr
om the airport sees the anxiety increase as the miles are eaten up. I shut down slightly as I watch the landscape whizz by out of the passenger window. I put the radio on, so I don’t have to talk. Talking when I’m feeling anxious is exhausting, as if I have to drag each heavy word from my brain to my mouth to form a sentence. What is there to say anyway?

  As we reach the final stretch of road before home, Tim is impatient, as if this last bit of the journey is too much to bear. And then we are home. I hear the familiar crunch of gravel under the tyres and count the new molehills that now scar the lawn. There are seven. I scowl at the weeds on the driveway and the sad wisteria over the sitting-room window. I won’t relax until I have seen the children and opened the post. But at least I am home.

  I get out of the car almost before it has stopped and throw open the front door. The familiar sound of the dogs barking greets me as I scoop up the mail from the table in the hall. Toby is in the kitchen. It’s two in the afternoon and he’s in his pyjamas eating a bowl of cereal. He hugs me with the awkwardness of a teenage boy as Tim sets our bags down and takes in the empty dishwasher and the pile of dirty dishes in the sink.

  The house never feels quite right when I have been away for more than a week. It is somehow slightly surreal. Wrong. Other. As if I have to get to know it again. I have to learn again to accept that the ancient Aga makes a gurgling noise whenever the wind blows. That the kitchen clock ticks with an irritating plasticity. That the rosebush tap-tap-taps against the kitchen window.

  The house felt like home before I went away, but that doesn’t mean it immediately will when I return. Just because I learned to find some semblance of peace in France doesn’t mean I can bring it home with me. When I see Tim or the children after we’ve been separated for a couple of days, I have to remember how to be with them all over again. They are familiar strangers. It is uncomfortable for all involved and I hate it.

  I’m always surprised by how much like men Jack and Toby look. In my mind they are their three-year-old selves, so the fact they are now taller than me and have slightly self-conscious beards is odd. The sink is full, but otherwise the kitchen is surprisingly tidy. It’s a relief, but doesn’t quiet the uneasy transitioning feeling I’m still coping with.

  The boys are in some ways so like Tim and me. Their looks and personalities are juxtaposed, though. Jack looks more like me – with his pointy nose, chiselled bone structure and green eyes – but his personality owes more to Tim. Toby’s features are softer and his eyes the exact bright blue of Tim’s, but he experiences the world more like me.

  When Jack forgets to double-check that all will be OK, he throws himself into life with the exuberance of a puppy. When he remembers to check, he can talk himself out of most opportunities or challenges. He shares Tim’s fascination with the physical world, particularly space and physics, but he has also inherited an inconsistent mood that goes up and down in a way I find painful to watch. And he can be distracted and chaotic.

  Toby is both of us too, but differently. He can be something of a contradiction. He is measured, and a risk-taker. He likes his life to be structured, but embraces challenges. He likes a degree of sameness and exists mainly on three kinds of food – pizza, pasta and baked potatoes. He prefers things done his way, but is also sociable and capable.

  I once heard someone advise the parents of teenagers to get a puppy so someone will always be happy to see them when they come home. It’s worked today. Huxley, our springer-Labrador cross, is thrilled to see us. He throws himself at Tim, his fawn-like legs going out at all four angles as he hurls his body towards him. He makes a sound that is something between a bark and a whimper. Conversely, Smudge, our miniature dachshund, wanders around the kitchen; the only clue that he is pleased to have us back is his tail, which is wagging with quiet approval.

  The dogs, too, are a perfect reflection of us. Plagued by clinical depression all his adult life, Tim seizes every opportunity that presents itself whenever the black clouds lift for any length of time. Then, he has all of Huxley’s boundless energy and enthusiasm. Throwing himself into any adventure without a moment’s thought. Kissing the joy as it flies.

  I’m more like Smudge, aloof and determined to avoid inclement weather and new situations. Smudge and I like things to be consistent, never changing, and his obsession with tennis balls matches mine with facts.

  Toby is now eighteen and on a gap year before going to Goldsmiths to study computer science. He is distracted by something on his phone as he gives us a debrief. What the dogs have eaten, how many times they’ve been walked, and how much money is left over from what we gave him to cover any expenses. He’s been careful, he says, so asks whether he might keep the balance to spend on a new Xbox game. He tells us how he worked out a daily budget to reach this position. I like his exactitude.

  Jack, who is in the second year of his gap ‘year’ and is being assessed for ADHD, stumbles into the kitchen, looking a little dazed, with the awkward, puppy-like beauty that seems to settle on boys in their late teens and early twenties for all too short a time.

  ‘Have you seen my wallet?’ he asks before even saying hello. ‘I was sure I left it on the table in the hall, but now it’s not there.’

  There is little to be gained by pointing out that we have been away for ten days and have absolutely no idea where it might be, so Tim and I share a knowing glance and let it go. Jack fills a bowl with bran flakes and adds milk until it is just short of overflowing. When he spoons the first mouthful, milk drips onto the kitchen table creating a puddle that looks like a sheep. He tells us that he spent all the money we left him and had to borrow £20 from his girlfriend, Mary. I’m so thrilled to see them both alive and well and having avoided any trouble that I don’t mind at all.

  ‘Can you take me to Zeke’s in ten minutes?’ Jack asks, chewing loudly. Tim rolls his eyes and inhales deeply as if he’s about to say no. He then shakes his head and reluctantly agrees. Toby goes back to his room to download his game.

  Jack and Tim leave – arguing only slightly playfully about the selfishness of expecting a lift that will mean Tim will be in the car for another hour, just minutes after getting home – and I am alone. I savour the feeling. The quiet. I take a moment to familiarize myself with the sounds that surround me. The hum of the fridge. The gurgle of the water cooler as it refills. Smudge’s snoring. I put the kettle on the Aga, sit down at the kitchen table and light a cigarette. It’s warm in here. The boys haven’t thought to open a window. I can’t be bothered to get up, so stay at the table until the kettle begins to whistle.

  I take my case up to my bedroom and begin to unpack. It feels so good to be back in my room. My sanctuary. Tim’s bedroom is directly opposite across the hall. People find it odd that we don’t share a bedroom and make assumptions about our relationship. We tend to say it’s because he snores or is a restless sleeper. The truth is I need my own space. I cannot sleep if there is even the slightest thing to disturb me. I am like the heroine in ‘The Princess and the Pea’. I can only sleep if everything is perfectly right. I need crisp, clean linen, soft pillows, an open window and an entire double bed to myself.

  The unpacking finished, I dump a pile of laundry in the washing machine and go into our study. It’s not pretty but it is functional and the room where words are most easily accessed. There is a white shelf unit filled with scores of books. I have loved reading since early childhood. Some of my favourite memories are based around books. I remember the feeling of freedom when the gates opened at the end of the school day and I begged to go to the library on my way home. There was a whole world contained in those four walls, and it was a world encased in safety.

  When I have occasionally been asked to imagine myself in a calm, peaceful space, I don’t think of lying on a sandy beach listening to the waves roll in or sitting at the top of a mountain. Instead, I try to conjure up the feeling of being in a London library of the early 1980s.

  I don’t have a great visual memory, so it won’t be a particul
ar building. It will, instead, be an amalgamation of a number. Every library of my memory has common features: parquet flooring, a cool stillness, ladies behind the counter radiating a calm efficiency and pride in a job well done.

  Library sounds are my crashing waves. The metal on metal of the date stamp being calibrated, the almost imperceptible squelch when the stamp meets the ink on the sponge, and the dull thud as the date is stamped, indelibly, onto a bookplate. I think of the papery sounds of cards being slipped into indexes, the crackle of microfiche pulled from a drawer, and I feel a sense of calm wash over me. In libraries people whisper. There are no sudden loud sounds, no shouting and no gratingly loud small talk.

  I dream one day of recreating a library-like room of my own. Floor-to-ceiling shelves stuffed full of books, all ordered neatly; if not alphabetically then by colour. A conker-coloured wooden floor, where I could sit on a rug and trail my fingers along the edges of the parquetry blocks while reading Enid Blyton, as I did as a small child.

  When I think back to my childhood, the memories are always centred around books. The characters within the pages felt more like friends to me than the ponytailed girls I shared a classroom with. I loved Katy Carr, Pippi Longstocking, Heidi, and Darrell from Malory Towers far more than the real girls I spent my days locked in school with. The girls in these books made sense to me. They were ultimately good and kind. Some had a bravery, a rule-breaking maverick streak that appealed to me. In real life, rules were never to be broken. The idea of even a minor infraction would send the electric shocks of anxiety shooting through my chest.

  I would read those books over and again. When I felt scared, insecure or confused by school life – nauseous at the smell of the food coming from the canteen, hurt and confused by the cruelty of my classmates, or stung with indignation at the sheer lack of logic displayed on a daily basis by my teachers – I would recite passages from my favourite books over and over again in my head.