by Laura James
I am sad because I can’t help but wonder how much easier life might have been had I been given this information years earlier.
I am scared because I cannot work out if this changes everything or nothing.
I have always known that I’m different. I have blamed myself for not being able to fit comfortably into the world. Not being able to do easily the things others seem to find come naturally to them.
Over the years I have attributed this difference to a chaotic childhood, an addictive personality, my being adopted, not listening at school, a fundamental character flaw, not being blonde and all manner of other nameless faults.
Now I have the answer I don’t know what to do. I am aware that soon I will have to leave this safe, warm room and go back out into a world that in some ways is more alien to me than ever. I will have to carry on with my life. I step out and go to find my car. As I walk along the pavement, the early evening sun hits my bare arms.
My limbs ache from having sat still for the past five hours and my head is whirring. I cannot hold on to a thought. Every sound is sharpened: the slam of a car door, the shriek of a girl wearing dungarees as she spills a little of her pink frappuccino onto her T-shirt. A boy punches her gently on her shoulder and I hear the clink of the metal as his watch touches the button on her jacket.
A woman is walking a beige pug. Her heels are hitting the pavement in a repeated pattern: click, clack, click, clack. The dog makes an unmistakable pug-like sound. A snuffle. The pattern becomes click, clack, snuffle, click, clack, snuffle. A small lorry reverses into a hotel car park, its warning alarm beeping. I am hearing each individual sound and it’s making me want to get away as quickly as I can.
Random thoughts zip through my mind. Will my name go on a register somewhere? Will they still let me drive? Should I tell anyone, or keep the news secret? Will my husband leave me? What will the children think? Have I been a bad mother because of my autism? Will I get a disabled sticker for my car?
I have been waiting my entire life for this moment. Now I have the answer, I don’t know what to do. I call Tim.
‘I’m autistic,’ is all I can think to say.
CHAPTER TWELVE
October 2016
On the drive back from the coffee shop I see a skein of geese flying over the farm. They are in two V shapes. The one at the front is large. The other, further back, is smaller. In the middle of them is one solitary bird. I feel an affinity with this lone goose.
I stare skyward at it, its tiny silhouette surrounded by activity, by other geese working together for a joint goal. It feels to me as if it is calling wait for me to the group in front or trying to hang back so he is scooped up in the crowd of geese behind. That solitary goose is part of something, but on the edge. Not quite fitting, but not able to completely break free and do its own thing.
Before my diagnosis, I had spent all my life waiting. Waiting to find out what was wrong with me. Waiting to fit in. Waiting for my life to begin. Waiting to find the proper me. Now, a year on, I realize I have been waiting for nothing and, like the middle goose, I will probably never fit in.
There isn’t another life waiting for me. I’ve been longing for my real life to begin and have been hit by a sudden realization. This is it. There is nothing else. I am a forty-something woman without the cushion of children at home. Living in the middle of nowhere. Unwilling or unable to allow others into my life. Too scared to make changes, my life will go on in suspended animation.
Why can’t I just be normal? It doesn’t seem fair. I spent so long not knowing why my body and mind felt so askew. Then I get the answer, only to be told there is no cure. This is it.
I sit on the sofa in the dining room trying to work out where I can turn for help. Who can I find to rescue me? I have tried love and that didn’t fix me. I’ve tried AA and that too didn’t work. I’ve tried therapy but am still processing my time with M. I tried throwing myself into work, but I am tired and need new challenges. Two incompatible positions.
I’m not sure if I have hit rock bottom, but I know the only way from here must be up. I can’t contemplate falling any further. I have never strived for joy, just neutrality, but even that seems out of my reach right now.
I am reminded of Sylvia Plath’s plea: Please, I want so badly for the good things to happen.
Tim has talked of my kind of existence being life in the grey, but I’ve realized he is wrong. When things go along smoothly, I feel as if my life is pastel coloured, either pale blue or pink. It’s not jolting, but calm and pleasant. Increasingly, though, this place is harder to find.
I know one can’t tackle every problem at once and I know I am starting from a point where I have no energy, but I have to try to get a grip and make things a little better.
I am exhausted. It’s October and I haven’t yet had even a single day off this year. Work is a big stress. The landscape is changing. Some of our clients are spooked by Brexit and have put planned projects on hold. We aren’t earning enough money and if something doesn’t change soon, we are going to be in stormy waters financially. Tim’s optimism means he believes something will just come along and it will all be OK. We are creative people, he says, and something has always come up. I have no such confidence. I think we make things happen and, while luck can play a part, we have to put ourselves out there so luck knows where to find us.
There’s another twinge in my chest that I am trying to recognize. I’ve been working hard at colouring in more spaces on the feelings wheel. I shade disconnected in green. It’s more than that, though. It feels more melancholic. I realize as I am pouring myself a glass of water that it is loneliness.
Tim and I are disconnected. That word again. We live in the same house but move separately. When he is watching wildlife programmes in the sitting room, I am in the study writing. When I am in the kitchen making supper, he is in the office playing guitar or writing songs. When I call him to tell him the food is ready, he says he’d rather have it in front of the TV. We can’t reach each other.
I feel the absence of the boys keenly. The silence of the house – something I have longed for all my life – merely underlines the absence of their noisy chaos. I find myself switching on the radio just to hear voices from another room.
I have neglected my life and things are piling up. I am late in doing too many things and I am panicking. A magazine I work on needs its pages filling, but I cannot find the energy or mental resolve to begin. This is autistic inertia at its most pernicious.
I am feeling burnout. Years of working too hard and not being able to switch off mentally are taking their toll. I have an infection in my left eye. It is pink and sore and when I inadvertently look at the light it sends a searing pain into my skull. My neck aches from bending over my laptop. My limbs hurt from lack of stretching. I sleepwalk from bed, to work and back to bed again. Cracks are beginning to form, but no light is coming in.
My isolation is becoming more complete. Cobwebs form around the house and it is as if they are taunting me, showing me how much like Miss Haversham’s my life has become. When did it shrink so far?
In my younger years I tried losing myself in groups of friends, but it was too overwhelming, too exhausting. Slowly and imperceptibly people began to fall away. I stopped returning calls or replying to messages. Now I rarely see anyone on a purely social basis. I have hunkered down, but not in a good way. Tim and I have no joint friends. We don’t do the usual thing of seeing couples. We should have built a circle by now. A circle to encase us, not exclude us.
Without the children, the shape of our lives has changed and we don’t fit together any longer. I don’t want to be this alone, but I don’t know how to change it. From the outside my life looks so different to how it feels on the inside. Others see me as hugely social. I know a lot of people. I have opportunities to do all sorts of things, but somehow I cannot say yes. There’s a difference between acquaintances one can hang out with and proper, nurturing friendships. The kind I fear and avoid.
Maybe M was right. Maybe I do need to allow more people into my life. I remember someone saying once, in AA, that they had stuck a quote above their bathroom mirror. It read: Only you can save yourself. What if this is true? What if it has to be me?
I hear Tim leave the house to walk the dogs. ‘You’re such a clever puppy,’ he says to Smudge in the voice one uses to talk to a small child. Smudge is nine. In dog years that’s sixty-three. Older than me by quite a lot. I like the voice. I like the feeling I get when I think of how much we baby Smudge.
I am reminded of an interview I did with Arabella Carter-Johnson. She is the mother of Iris Grace, a hugely talented autistic child whose paintings have been compared to those of Monet. It was a quick interview for a ‘what it’s like to’ page for a consumer magazine. For this kind of piece, I would usually spend around fifteen minutes on the phone chatting to my subject. I spoke to Arabella for an hour and a half. Her manner was so soothing as she told me how she creates a soft, safe world for Iris to explore.
Would my life have been different if my autism had been discovered earlier and if I had been parented in the same way as Iris? I think of Sarah Wild and the way the girls at Limpsfield Grange are prepared for the world. Maybe things would have been better for me, but what does it matter now? I can hardly pitch up at Arabella’s front door and ask her to adopt me, or enrol for classes with Sarah.
Feeling hopeless, I wander into the office to check my emails. There are Twitter notifications, a couple of press releases for creams guaranteed to zap wrinkles, a few LinkedIn invitations, lots of junk, and vouchers for Pizza Express. Now Toby is no longer home they don’t seem worth redeeming.
There are 8,590 unread emails in my inbox, slightly more on my phone and 5,000 on my iPad. Every day these numbers make me feel guilty and out of control.
The thoughts about my childhood won’t leave me. I want to press the reset button on my life. I want to restore my factory settings and go back to the start. Without really thinking about it, I create a new folder for my email on my laptop. I call it ‘old mail’ and move the eight and a half thousand emails into it. My inbox is now empty. There is no nagging number beside it. All I can see is pristine white. It makes me feel calmer.
I select all the emails on my phone and press delete. Within seconds they all disappear. Then they come back again. I wonder if it’s like that with life. I try again and the same thing happens. Maybe there were just too many for the system to cope with. I begin deleting them one by one. It will take hours. I give up. Perhaps I can do a few hundred each day until there are none. Or maybe I should look online and find a fix so they can all be gone immediately.
Tim joins me in the office and opens the music production software on his Mac. I think of sharing with him how I’m feeling, but pull back. I pretend to be working as I take in how tired he is looking.
His moods are cyclical, but have been much more stable as he has got older. When depression descends, though, its grip is tenacious. I have been so wrapped up in the political landscape, the children leaving and in myself that I haven’t noticed the telltale signs. His temper has been shorter of late. Conversation has been less. He has been eating and smoking more and he has been more lethargic. He’s still been playing tennis twice a week, but has been going on fewer long dog walks, instead throwing balls for Huxley and Smudge in the garden.
While Tim’s moods have always been mercurial, he has also experienced episodes of major depression over our time together. A couple saw him hospitalized, while another was so bad we decided we needed to spend time apart. Things had been difficult between us and we couldn’t find a place to meet in the middle.
I was spending more and more time away from home just then. Work was going well for me. But for Tim, his period of enforced garden leave had left him feeling adrift, as if he didn’t know how to get back into work. He was working with me, but it was always meant to be a temporary measure until he found something more rewarding that would excite him and spark his interest.
Work didn’t take up enough of his time and so, in the spaces in between, he wrote songs. They were good. He hoarded them on a hard drive. In a darkened room, usually in the early hours of the morning, he poured all of his emotions into them. The lyrics were the story of our marriage, all his love, pain and resentment flowing out. Sometimes they shocked me. There was so much feeling in them. They told the story of us.
He wrote of our clash of wills, our need for different things and our very different takes on the world. In a track called ‘Is it Part of the Deal?’ he wrote . . .
So baby if I wake up mine’s a large Jack Daniel’s, with lots of ice.
Crucifix and daisy chains, victims of the vandals. Now that’s not nice.
You tell me you know what it’s like as you’re filing my life on a spike.
You tell me you know how I feel.
Is your arrogance part of the deal?
He wrote of his depression and a feeling, buried deep inside, that he could be a better man. In ‘Somewhere in My Room’ he wrote . . .
Somewhere in my room there’s a man you’ve heard of.
Somewhere in my future there’s a man you’re proud of.
Somewhere in my room there’s a world I’ve dreamed of.
Somewhere in my head there’s a space for feelings.
I couldn’t understand what it was to be depressed. I could sympathize, but I didn’t know how to empathize. I couldn’t understand why he would do nothing to help himself. I bounced from therapist to therapist trying to fix my brain and from doctor to doctor trying to fix my body. When they told me I was imagining things, that everything was all right, I didn’t doubt myself for a moment. I knew I was right and they were wrong.
I once read that depression is anger turned inward. This might have been true for Tim, I don’t know. What I do know is that he turned the anger outward too. He directed it towards anything or anyone that got in the way. Often that was me. The angrier he got, the more I shut down.
It became so we couldn’t be together. We agreed something had to change. He had always been passionate about wildlife and the natural world, so he decided to go to university in Reading to study for a degree in zoology.
The idea was discussed for some time until, finally, I thought I was fine about it. I am not good at predicting how any one thing will make me feel. I helped with the practical arrangements and went to Reading with him to help him find somewhere to live. I dug out sheets, plates and pans for him to take. I ordered him some books online. We talked about how he would leave on a Sunday afternoon and come home on a Thursday evening to spend time with me and the boys. He was excited, energized and ready to do something new. I was relieved that the shouting was over and was looking forward to establishing a sense of peace again.
I bought myself a pink Roberts radio, so I could listen to the Today programme as I packed the children’s lunches and got them ready. The boys were still at primary school. They were surprisingly accepting of Tim going away. They saw the house he was going to live in and liked the black cat they met there.
Tim left on a Sunday in September. The weather was still warm and we had spent the day on the beach. It was one of those perfectly memorable days. The sun was warm, the children happy and we walked for miles with our Labrador, Ziggy. We stopped for tea and cakes at a beachside cafe. The children giggled as they ate ice cream. No one squabbled or cried. We felt like a unit. Solid. Us against the world. That evening he left.
I was unprepared for the tsunami of pain that hit me. I felt laid bare without him here. It was a change I didn’t know how to accommodate into my life. I felt his absence in everything I did. It was a feeling I couldn’t tolerate. My meltdowns increased. Anything could tip me over the edge: a traffic jam, the supermarket not having the only brand of pasta sauce Toby would eat. An unexpected bill. A rain shower. I simply couldn’t cope with anything going even slightly wrong.
Tim only lasted two terms. He missed home too much. He wasn’t ov
erly emotional about it; he had enjoyed university and the work and could rationalize his being away from home. It didn’t matter to him that he hadn’t finished his degree. He felt it was a distance we had needed and when he came back he was changed. He had begun taking antidepressants. His mood was more stable. He no longer reacted so quickly or angrily. He had mellowed.
He came home from Reading and we carried on in the same haphazard fashion as before. We found a sort of peace. Life just happened and slowly we grew together rather than apart. In those intervening years we gave in to our eccentricity. We learned to be a family. Now the boys have gone and the shape of our lives has changed we’re needing to learn all over again.
Our relationship must appear a strange one from the outside looking in. He craves the exciting, while I long for neutral. He is fiery. I am conciliatory. He welcomes challenges, while I desire the predictable and the familiar. He loves nature, while I find outdoors confusing and overwhelming. He loves making music, while I was told to mime when in the school choir. He is sporty, while I prefer sitting still and reading. I am constantly second-guessing the future. He has somehow managed to find a way to live in the moment, mindful but perhaps with a reckless disregard for the future.
It was around the time that Tim came back that I stopped comparing our relationship to others. It was also the time I stopped actively blaming Tim for all our problems. It is easy to pin everything on the erratic one in a partnership, too easy I think. Because Tim’s problems were immediate, loud and difficult, they were impossible to ignore. They meant, however, that I had never had to question what I brought to the relationship. After all, wasn’t I the one who was solid, reliable, always there to fix any problems?