by Laura James
As soon as we arrived in Paris, I spun out. I had found out a week or so before the wedding that I was pregnant and the moment we checked into our hotel my morning sickness began. I spent the first night of our honeymoon in a Parisian hospital. I was terrified. I couldn’t speak French. I was vomiting violently and had terrible pains in my stomach. I thought I would lose the baby.
I didn’t feel connected to Michael. I felt alone and on the other side of something impenetrable. I think it was the first time I realized that feeling isolated while with someone is the worst kind of loneliness.
We left France soon after this, cutting our honeymoon short. I hated being away from home. I couldn’t cope with all the changes being sprung on me at once. I was married. I was pregnant. I was ill. I retreated into myself and allowed myself to be swallowed into a typically autistic shutdown.
On arriving back in London I was immediately admitted to hospital for three months. I couldn’t stop throwing up. I hated the ever-present nausea, the dashes to the loo, the feeling of acid in my throat, the fear that I would be eroded by it.
More than this, I hated feeling different. I had stopped feeling like me. I still have this with any illness, even the mildest of colds. I cannot tolerate feeling anything other than my usual self. Illness – even simply a blocked nose or sore throat – causes me to feel uncomfortable. It is as if I no longer quite recognize myself.
Awash with hormones in a small room in a London hospital, my focus narrowed to the space between the bed and the loo, unable to move any further than the tube on the saline drip would allow me to. The room was overwhelmingly brown, a colour I find hard to cope with at the best of times. The carpet was the kind of nylon that squeaks beneath one’s feet. Everything in the room was made from a material that grated. I was trapped in this tiny brown cell. I was a child about to have a child.
The Boy came to visit. Sitting on a brown plastic chair, he draped his legs on the hospital bed and ate the grapes someone had brought. He lit a Marlboro Red. The smoke rose and hung around the ceiling. I tried to tell him of my fears.
‘I think I’m in hell,’ I told him, looking down at my fingers, which were folding pleats into the bed sheet.
‘It was hell in Da Nang,’ he said, adopting a fake American accent. Vietnam war films were big around this time.
Part of me had hoped he would rescue me from the bed I had made for myself. I have spent many years since longing for someone to rescue me. Every time things become too hard I dream of a knight on a white charger, someone more equipped for life than I am, to make it all somehow OK.
Instead, The Boy told me he was off to travel the world. It was a pattern that year. Friends dropped into my hospital room carrying backpacks, telling me they were off inter-railing through Europe or going to America, to the Far East, to India. Everyone was leaving.
Michael came to visit. He couldn’t have been nicer. Every day he’d tell me how things would get better, how the sickness would pass, how we would be a family. I hadn’t really allowed myself to think that far ahead. Hadn’t allowed the idea of me becoming three to permeate my brain. I was stuck in the moment, trying to hold on.
My mother-in-law, whom I adored and who was one of the main reasons I believed I could cope with marriage (she did it so well), dropped in with some new nightwear for me. I was shocked when I looked at the label. It said age 12. Struggling out of bed and looking in the mirror, it became clear just how much weight I had lost. My cheekbones, always pronounced, now pushed at my raw skin like the wrong fingers in a glove. My ribs were visible. My hipbones sharp and pointy. Sitting on a hard chair hurt as there was no flesh padding out my bottom. I was physically and mentally being steadily erased.
Weeks later, I found myself alone in our tiny flat. Michael was at work and I moved from one room to the next, imagining what it would be like doing this with a tiny baby. I don’t think I was depressed, but my mood veered between melancholy, fear and guilt. Michael deserved a better wife and my baby certainly deserved a better mother.
The forty weeks passed quickly. I went into labour violently. There was blood, lots of blood. I was haemorrhaging. I was panicking. Michael was panicking. An ambulance was called. My GP, who lived in the same block of flats, came down and told me it would be fine. It didn’t feel fine as I looked down at the puddle of thick red growing larger on the white tiles of the kitchen floor.
I don’t remember much about the labour, apart from at one point willing myself through it by thinking that – at the end, when it was all over – it would be as exciting as getting a new kitten.
When the moment came and I met my daughter for the first time, everything else fell away. I felt consumed with love. She smelled so delicious I had a primal urge to lick her. I looked into her eyes and clearly understood for the first time what love feels like. We called her Lucie. I thought I could make it work. I thought I could stay married and be part of this new family with a tiny baby at its centre, whom I loved more than life itself. It wasn’t to be.
M coughs quietly. She is looking at me intently.
‘How is your relationship with Tim since your diagnosis?’ she asks.
I’m meant to be working on how I feel now, but all I can do is think back on all the mistakes I have made. It is as if I have to catalogue each of them in my head before I am able to move forward. The guilt is overwhelming.
‘Where did you meet?’ M asks, trying a different tack and switching on a lamp on the table next to her.
It’s a question all married couples have a story for. We have two. The truth and the lie.
Whenever the question surfaces, Tim and I hesitate for a moment, before one of us will say, ‘We met through a friend. Tim was sharing a flat with her while he was going through his divorce.’
This version of events is the lie. The truth is that we met at the Charter Nightingale Hospital on Lisson Grove in Marylebone. I was twenty-three and being treated for a benzodiazepine addiction. Tim, nine years older, was being treated for depression. I was still married to Michael and Tim had just separated from his first wife. Like me, he was adopted, but it had left him with issues of rejection he believed may have contributed to his depression.
Though I didn’t know it then, my EDS was at the heart of my health issues and it was what led me to be admitted to the Charter. Pretty much every woman I have come across with Ehlers-Danlos syndrome has, at some point, been misdiagnosed. Often it is with chronic fatigue or fibromyalgia. If they are one of the many who is also autistic, they might have been given a diagnosis of bipolar disorder, borderline personality disorder or even Munchausen’s.
I got off fairly lightly. I was misdiagnosed with hyperventilation syndrome. I got my diagnosis from a doctor recommended by a family friend. He gave me a prescription for some seemingly innocuous blue pills. I took them for eighteen months and, although I still had pains in my joints, episodes of fear and a feeling that all was not right in my body and brain, things were calmer. I did feel a little better.
I was desperate for Lucie to have a sibling. I didn’t want her to be an only child like me. I wanted so much to become pregnant again. After months of trying, I went to see a doctor, who found a problem. I had a small operation and within six weeks I was pregnant with my second child.
I was pleased, but things weren’t brilliant between Michael and me. I was struggling to share a small space and my life with someone else. I became secretive, retreating into my head, not being able to talk about how I felt.
Lucie and I were inseparable, though. I understood this small person more than any other human I had ever encountered and I was pleased that soon she would have a new sibling.
A few weeks before I was about to give birth to her sister (I had found out her gender as soon as possible – I don’t like surprises) my obstetrician retired and I had to start over with another. Doctors frighten me. It’s easier now I have my autism diagnosis. I feel I can be honest, tell them I’m scared, and explain why I find consultations difficult.
Before, I had no explanation, it felt like another failure on my part.
My new consultant was the scariest kind. In his early forties, he was suave and busy. His consultations were quicker than I was used to and the examinations made me feel uncomfortable. I filled in a form before I saw him for the first time and one of the questions was about regular medications. I listed Lorazepam.
He told me I’d have to stop taking the pills before I had my baby, that they were dangerous for her. Why had no one else told me? He suggested I be induced three weeks after our first appointment. I was terrified. Anything medical made me panic at the time, but I had no idea of what was to come.
I stopped taking the pills forty-eight hours before I was due to be induced. I felt jittery and scared. I couldn’t eat or sleep. My pulse raced. I had a pain in my chest that felt so wrong. I looked in the mirror and my face seemed different. I knew I was going to die, or go insane, or die, or go insane. I knew this couldn’t be normal. I rang the maternity ward in a panic. They said they would track down my consultant. He rang me at 11.30 p.m. and told me to hang on, that it was OK.
I can’t remember much about the birth of my second daughter, but the feeling of love when I saw her was just the same as it had been with Lucie. We called her Tatiana, later shortened by almost everyone to Tatti. Immediately I knew she was her own person. I thought all babies were the same, but on meeting her, I knew she’d be an adventurer.
Lucie came in with Michael to visit her new sister. A doctor was in my room doing a heel prick test on Tatti. She was screaming. Lucie took in the scene and began to cry. She breathed in and didn’t exhale. We waited. Her body stiffened, her back arched. Michael put her down on the bed. The young doctor looked concerned. I was frantic. He couldn’t find a pulse. A team rushed in. There was talk of meningitis. They whisked her away to another ward. Michael went with her.
I struggled out of bed, unable to stand up straight, in pain from the eighteen-hour labour I had just been through. Tatti, by now, was asleep in a clear, plastic hospital cot by my bed. She looked so peaceful, her long eyelashes grazing her cheeks. Raw fear was surging through my veins. I had to get to Lucie. I pulled on my jeans and T-shirt and a nurse walked me through a labyrinth of corridors until, finally, I saw my daughter in a high-sided metal cot, screaming.
I can’t remember much of what happened next, except for an overwhelming feeling that maybe I wasn’t meant to have two children. Maybe the god I have never believed in was going to take Lucie away from me. My thinking was wrong. Part of me knew this, but the pain from giving birth, the withdrawal from the drugs and the overwhelming fear about Lucie coincided to make thinking rationally impossible.
We were later allowed to leave hospital. The incident was written off as unexplained and it wasn’t until years later, when Toby had his first seizure, that I recognized what had happened in that room. A reflex anoxic seizure.
Off the Lorazepam, I lasted only a few more days, at home with Lucie and Tatti. I developed vertigo. The panic attacks increased. I could feel nothing but fear. I couldn’t look after my girls. I couldn’t look after myself. My sensory issues were magnified to a terrifying extent. Even the slightest noise, a cupboard door closing, a distant car, felt like an explosion. I was jumpy and nauseous. My heartbeat was so irregular, I was sure I was about to go into cardiac arrest.
Michael found me a doctor. He came to our flat and immediately admitted me to the Charter Nightingale Hospital to undergo a benzodiazepine withdrawal programme. Those little blue pills had rendered me unrecognizable, even to myself.
Lorazepam, the doctor told me, is habit forming. It is easy to become addicted. It shouldn’t be used long-term. Withdrawal is harsh and should be done slowly, tapering the dose. It can be dangerous to stop cold turkey. I learn more about the drugs that had sent my life spinning out of control in this one conversation than I knew the whole time I was taking them.
I was twenty-three. The mother of two small girls – alone, confused and terrified. When I look at my own children – two of whom are now older than I was then – I realize I was no more than a child, but I had let everyone down . . .
Rehab – Spring 1993
I’m lying in a narrow, metal, single bed. The noises from the corridor scare me. They are hard to identify. I think I can hear someone crying. I know I can hear someone shouting. There’s laughter too. I hate this scary alien place. I want to be at home. That’s not true. I want not to be. I want to stop feeling and thinking and being. I don’t want to be dead. Definitely not dead. I am not a risk to myself. I know this because when I went through the questionnaire with the nurse, she ticked a box saying I was not a risk to myself or others.
I can hear music. It’s after 11 p.m. I’m surprised music is allowed. I’m never going to get to sleep. Literally never. The door opens a bit and a nurse holding a torch pops her head round the door. Seriously? They say I need rest, that I am exhausted, and then they come to shine torches into my eyes. I’m never going to get to sleep. Literally never.
I see midnight and 1 a.m. and 2 a.m. Then I am hovering on the edge of asleep and awake. The bed crinkles under me. I know I am not dreaming, but also I know I am not thinking lucidly. It’s at this point in between where magic can happen. Here I feel calm, safe and warm. Here I am not irritated by the roughness of the sheets or the way my pyjama top is riding up under the covers. Here I just am. It feels peaceful. Calm. It feels OK. Maybe it will all be OK.
Another torch in my face! It feels like a slap. I sit up, quickly.
‘Go back to sleep,’ a second nurse says. ‘I was just checking you’re OK.’
‘I am not OK,’ I snap.
‘Get some sleep. Things will seem better in the morning.’
I am never going to get to sleep. Literally never.
I get up to go to the bathroom. It’s opposite my bed. It’s a small room with a bath, a basin and a loo. There’s a shower over the bath and a glass panel to stop water from the shower splashing onto the floor. It makes getting in and out of the bath difficult. I splash cold water on my face. I am on the edge of a panic attack. I feel the telltale signs. A warm, slightly tickly feeling spreads through my chest. It feels quite pleasant when it begins, but then I recognize it for what it is and terror grips me.
Maybe I’m dying. Standing in front of the mirror, my heart is racing. Maybe I’ll have a heart attack and they’ll find me in the morning. The doctors swear there’s nothing wrong with my heart. I don’t believe them. I am sure they are wrong.
I walk back to my bed, holding my hand against my face so I won’t accidentally catch a glimpse of the darkness behind the window.
Yesterday a nurse told me that there are lots of people here who are terrified of looking into windows in the dark. Apparently it’s because they have taken a bad batch of Ecstasy that has sent them a bit mad. Drug-induced psychosis. That’s its proper name. I wonder if I have this too. I feel as if I am a minute away from madness.
The drugs I took weren’t bought in a dark club from a dealer. They were given to me by a Harley Street doctor. I didn’t ask what they were. Why would I? He told me the little blue pills would make me better and I believed him. They haven’t made me better. They’ve put me in this frightening place.
At 6 a.m. a nurse comes in. She is holding a tiny plastic cup with two yellow pills. She holds it out to me and pours me a cup of water from the jug by my bed.
‘I’ll take them in a minute,’ I say, thinking I can wash them down the sink when she leaves.
‘They’re a controlled drug,’ she tells me. ‘I need to see you swallow them.’
I start to shake. ‘I don’t want to take them.’
‘Why not? They’ll make you better.’
I am on a withdrawal programme. Each week I will take a lower dose of these pills that have me in their grip until one day I won’t need them anymore.
‘I’m scared to,’ I say.
‘You can bring that up with your therapist later. Just take these ones a
nd you can tell her how you feel this morning.’
I can’t take them. I panic. I want to run but there’s nowhere to run to.
The nurse is coaxing and cajoling. ‘I’m going to have to stay here until you take them,’ she sighs. ‘And I’ve got a lot I should be getting on with.’
I tip the pills into my mouth and put them under my tongue. I take a gulp of water. The bitter taste of the pills is making me want to gag.
‘Lift your tongue up,’ the nurse says. I learn later they are wise to anything I might think of. Not wanting to be caught out, I take another mouthful of water and let the pills wash upwards in my mouth.
I open my mouth and show her the pills are gone. ‘Well done,’ she says. ‘Now get dressed and you can go and get some breakfast.’
I lie in a hot bath, trying to quell the rising panic. I count to ten and then start again. I must be up to five hundred in tens, but the panic won’t subside.
I need to eat but I don’t want to go down to the restaurant. Yesterday I watched the girls with eating disorders in there. They sat at a table on their own with their counsellor. The other patients, the depressed ones, the anxious ones, the addicts like me, can sit anywhere we like. The ED girls have to sit where they are told. Their counsellor watches their every bite.
I don’t eat a lot. I can’t eat when I am feeling this out of control. My therapist asked me questions about food. She said I have ‘issues’ with it. I told her I didn’t, I just liked the food I liked and didn’t like the rest.
I pull on my jeans and a pink sweatshirt that has a picture of a teddy bear on it and swirly writing that reads The American Dream. I put on my pink Converse high-tops and push my hair back into a ponytail.
I walk to the kitchen down the corridor. It’s like I imagine a communal kitchen in student halls to be. There’s a microwave oven, a toaster and three kettles. People here make a lot of tea and coffee. There’s a big table in the middle of the room with ten chairs around it and there’s a large, battered brown sofa in the corner.