by Laura James
I feel reassured. EDS is something many medical professionals are unaware of. I like that she’s being honest about not having heard of it and that she has taken the trouble to do some research.
‘It’ll be fine,’ I say. ‘My skin isn’t fragile. It’s just the rest of me that’s falling apart.’
She laughs and asks me to undo my gown. Tim hovers in a corner, trying to keep out of the way. He always looks awkward at moments like this, as if he is trying to make himself smaller.
There’s another knock on the door and a striking dark-haired woman in navy blue scrubs comes in and introduces herself as the anaesthetist. Tim stands up straighter. He always does this when he sees a woman he finds attractive. I find it endearing. He also makes sure he sounds clever. The anaesthetist walks to the other side of the bed. The room is now feeling very crowded.
This will be my tenth operation in three years. I know the drill. Hours of sitting around feeling hungry and scared, with a sense that nothing will ever happen, the minutes stretching into eternity. Then a sudden burst of activity and a feeling that everything is beginning to move too fast.
‘I’ve just come to have a quick chat about the anaesthetic,’ she says.
‘I have a routine,’ I say. ‘As soon as possible, they give me some Midazolam. I also have Fentanyl. I won’t have antibiotics, blood thinners or anti-emetics.’
‘You have allergies, too. And autonomic dysfunction,’ Tim adds, pointlessly.
Someone else comes in. He introduces himself as the surgeon who will be performing my operation. I lean over and grab a piece of paper from the bedside table.
‘I’ve discussed the operation with my consultant and he feels it would be best done like this.’
I hand the paper to the doctor. It has a diagram to show where my abscess is and how the incision should be made.
‘I’ve had a word with him.’ He is reassuring and not at all dismissive or argumentative as I imagine he might be. He is short and slight and looks more like a history teacher than someone who cuts open bodies for a living. His hair is thinning and he has delicate metal glasses that look as if they will fall from his nose at any moment. He looks kind. And tired.
This is now going quite well. Before my EDS diagnosis, when my digestive issues and abscesses – this is my fourth – went unexplained or were written off as ‘just bad luck’, I had my operations in a small private hospital (I was fortunate to have had health insurance). After the EDS diagnosis, I was deemed too much of a risk to be operated on anywhere outside of an NHS general hospital. So I am here, feeling guilty that I am so high-maintenance but also terrified they will give me drugs that will make me even more ill.
Those with EDS are often very sensitive to medications and I haven’t found an antibiotic I can tolerate. Any I have taken have caused me to come up in itchy red lines all over my body and to suffer the most appalling upset stomachs, which in turn can lead to some pretty horrific health issues. Once it led to sepsis.
The surgeon takes the sheet of paper from me and studies it.
‘Can I examine you?’
‘Do you want me to go out?’ Tim asks. I find this so strange. He’s seen me give birth to two babies.
‘I’ll just stand over here,’ he says moving as far away from the bed as possible. I don’t understand his squeamishness. We discussed it after my last op.
‘Don’t you find it so undignified, being wrapped up like a turkey in a hospital gown and those awful stockings?’ he had said.
‘A turkey?’
‘Well, you know, it’s just so undignified.’
I didn’t, and still don’t, understand what he meant. I don’t know what indignity means. Tim says he feels judged by others, but I don’t really understand how this feels, what it means and why he cares. We are all here for a reason. I need to be fixed and the doctors get paid to fix me. I don’t care what they think of me and imagine they don’t care what I think of them. We just need to negotiate a position where we can all get on with playing our roles. Mine to be that of compliant patient. Theirs that of skilful surgeon.
Once it is over and I have readjusted my gown, the doctor gives his verdict. ‘It should all be fine, but we won’t know exactly what we’re dealing with until I can examine you properly once you are under the anaesthetic.’
He looks at my file. ‘I see you are refusing antibiotics.’
‘Yes. My consultant agrees it’s the best course of action and I haven’t taken any after my other ops.’
‘It’s a risk.’
‘I know, but I feel I’ll be more at risk if I take them.’
I can see he’s not thrilled with the situation. He has folded his arms and looks away from me and out of the window.
‘You can ring my consultant.’
‘No, it’s fine. We’ll do it your way.’
I sign his consent forms and he leaves. Tim and I are alone again. Suddenly the room feels empty.
Then, there is another knock on the door and a cheery girl comes in.
‘Hi. I’ve come to take you to theatre.’
‘What floor is it on?’ I ask. ‘I can’t use lifts.’
For previous operations I have always walked down to theatre and then been given an extra shot of Midazolam just before going back in the lift.
‘This floor,’ she says. ‘Just across the corridor. You can say goodbye to hubby now and you’ll be back before you know it.’
She takes the brake off my bed and begins to manoeuvre it out of the room.
‘It’s going to be fine,’ Tim says. ‘Try not to worry.’
This irritates me hugely. Has he given any thought to the veracity of that statement? How can he possibly know that everything is going to be OK? He has no idea if it will be fine or not. It is beyond annoying when he hands out such platitudes.
The girl driving my bed is too chatty. They always ask the same questions. Do you have children is the opener for women of my age, apparently. I know they do it to take one’s mind off what is about to happen, but small talk kills me.
I change the subject. ‘How close to death does an anaesthetic actually take one?’
‘Ooh, I don’t know about that sort of thing,’ she says. ‘Are your children boys or girls?’
In the pre-theatre anteroom I have to shuffle over from my bed onto the trolley next to me, which is quite a few inches higher.
‘How soon can I get the Midazolam?’ I ask.
‘A couple of minutes,’ the beautiful anaesthetist says. Her hair really is very shiny.
‘Thank you.’ I have to remind myself to be polite. ‘Sorry I’m such a pain.’
‘You’re all right,’ she says. ‘It’s actually rather nice to have a patient with your knowledge of drugs.’
I decide to try again.
‘How close to death does an anaesthetic actually take one?’
‘It’s a very safe procedure,’ she says. ‘I’m just going to pop a cannula in, so you’ll feel a sharp scratch.’
It takes a second and doesn’t hurt at all. The room is busy. At least six people are crammed in here.
‘Am I your worst patient today?’ I ask.
‘God no,’ she says. ‘You don’t even come close.’
A man to my right in green scrubs is keen to join the conversation. ‘I remember this one patient,’ he says, leaning over slightly. ‘An elderly patient with dementia. Just as I walked into his room with a cheery hello, the man stood up, walked quickly across the room and said, “I can’t believe you’d show your face in here after what you’ve done,” before promptly punching me hard in the face!’
I feel bad for finding it funny and make a mental note to colour in ashamed.
‘Ready for the Midazolam now?’ the anaesthetist asks.
‘Yes please.’
She comes towards me, syringe in hand. My heart is beating hard in my chest. I can almost hear it and I can’t quite catch my breath. As soon as it takes effect I will be forced to give up controlling everything ha
ppening to me.
‘You will remember not to give me any antibiotics,’ I say as she inserts the needle into the cannula and I begin to feel the cold, sharp sting of the drugs entering my vein.
Then everything becomes calmer. My heart rate slows. I feel an absence of anxiety. The sounds, while they are still there, no longer jar. The lights are still bright, but I am seeing them as if through gauze. Instead of hurting my head they are beautiful. I see the way the light glints off a metal kidney dish and think how pretty it looks. The colours in the room are so vivid. How have I failed to notice them before?
I can hear voices, but can’t quite make out what they are saying. It reminds me of being in bed as a child and hearing my parents and their friends talking downstairs over dinner. It’s a reassuring sound. One that means I can give up and let someone else take charge for a while.
I lie very still and notice the absence of pain. Everything abrasive is absent. It feels blissful. I squint and look at the lights. They remind me of snowflakes. I look at the blonde ponytail of one of the women in the room. It cascades down her back like a waterfall. It looks as if it would feel soft. I want to reach out and touch it. I hold on to this feeling of everything being OK. It is the neutral I strive for but never quite reach.
Norfolk – Winter 2000
The snow is falling hard now, insulating the world and causing it to fall silent. It is beautiful to watch as it catches in the car’s headlights. It is also terrifying.
I can’t drive in the snow. Its arrival sends my heart racing. Suddenly the car that is my private space, where I can hide from the world, becomes a dangerous place to be. Familiar landmarks are blanketed in white, making them look different. It’s a surreal landscape, one that is unfamiliar.
Even with the merest covering on the road, the rules change and I am gripped with fear. It is too different from what I am used to. I don’t know how to react. I grip the steering wheel as if at any moment a patch of invisible ice will send the car into a skid that I will be unable to control.
I pull over to the side of the road and sit with my head in my hands. No one else is out and I am surrounded by blackness. Home feels a world away and as if the territory I would have to cross is hazardous and uncharted.
I wonder when Tim will start to worry. I look at my phone but I have no signal. In my head, I run through my options. Could I walk home from here? Should I walk home from here? I am half a mile away, but I don’t have a coat with me and my shoes would probably only last five minutes. I could sit it out and wait for service on my phone, then call Tim and get him to pick me up. I check the phone again, but still no bars. There never are on this stretch of the road as it winds its way through dense woodland.
In my rear-view mirror I see a car’s headlights in the distance. If I were to pull out just after it passed me, I could follow it and mirror the driver’s actions; matching his speed, slowing when he slows, braking when he brakes. Safety in numbers. I switch on the engine and wait, watching the headlights slowly getting bigger and brighter. Then, just as I think it’s about to come close, it slowly and deliberately turns off.
I check my pulse. My heart is racing. Another car is approaching. I send a silent prayer into the snowy landscape and it eventually draws level. I pull out behind it and creep along the road. I feel dizzy. I open the window to allow in some fresh air and turn on the radio to feel less alone.
I copy the car’s movements and try to remember Tim’s advice on driving in the snow. But I’m confused. Is it low gear, high revs or is it the other way round? High gear, low revs?
Eventually, I see the house. I indicate and pull in. I sit on the driveway and switch off the engine. I’m shaking. I look up and Tim is standing by the driver’s-side door.
‘Hello,’ I say, gathering up my things.
‘I was worried. I tried to ring, but your phone was just going to voicemail.’
‘The journey was a complete nightmare.’
‘You could have abandoned it and found a hotel.’
‘I wanted to see the children,’ I say.
‘They’re all fast asleep.’
I look at the clock in my car and am surprised to see it’s 9 p.m. The children, whose bedtimes are erratic at the best of times, have been staying up later over the past few days. Seeing them would have been a reassurance.
‘They were exhausted,’ Tim tells me, looking pretty shattered himself.
It’s warm in the house. Tim has lit a fire.
‘You must be starving?’ he says. ‘I bought bread and cheese. I thought we could eat in front of the fire. Get you warm.’
‘I’m not hungry.’ My tone is cold and I can see Tim is hurt. ‘Sorry,’ I add, ‘I just need time to come down a little. You know it takes me time to acclimatize when I’ve been out for a few days. I just need to get my bearings.’
‘Why don’t you have a bath and chill out for a bit then?’
‘I don’t need a bath and it’s too early. You know that. I’m going to go into the office and quickly check to see if anyone has emailed. I won’t be long.’ I start to leave the sitting room before sensing I need to do more. ‘Sorry. Just give me half an hour or so. Just to get over this re-entry stage.’
It is close to 10 p.m. when I join Tim again in the sitting room. He switches off the news on TV and we sit on the floor in front of the fire. I look out through the open shutters. The snow is still coming down. I switch on the outside lights and we sit together in silence. It feels as if the world around us is slowly shrinking. There will be no school or nursery tomorrow. Tim will cancel tennis. I will cancel the meeting I am meant to be going to in London.
I can feel the warmth of the fire on my face. I am slowly thawing. Now, it seems as if we are the only people on earth. If every day had the insulating calm of a snow day, I think I could be happy.
I take a piece of bread and cheese and pour a glass of wine. ‘I’ve been thinking about something for a while,’ I say. Tim turns to me, suddenly alert.
‘I’m not very happy at work. I’m finding it too hard.’
‘Hard in what way? I thought you liked it?’
‘I do. But I hate the other stuff. The endless meetings. The having to go to the pub after work. The forced team spirit. The three-line-whip on going to the wine bar every Thursday evening. It’s so hot and so loud. The people exhaust me. And I think there’s something wrong with the building. It makes me feel ill. The lights are too bright and the air is sort of fake. The temperature is all wrong too. I can’t concentrate. It’s all too loud.
‘But also, I just can’t cope. I think I should go freelance and work from home. Writing and some PR.’
The statement hangs in the air until a sharp crack from the fire punctures the silence.
‘Can we . . . Do you think we can afford to do that?’ Tim says. ‘Your salary gives us . . . Well, a degree of certainty.’
‘I’ve looked into it,’ I say, making an effort to sound confident, ‘and I would be able to take some work with me, and I think more would follow.
‘I know I would be so much happier not having to go into an office every day. I find it exhausting. I can’t cope with people when there are too many of them together in one place. They have strange ideas and weird needs. They talk about someone in unflattering terms one minute and then are cloyingly nice to them the next. It’s so disconcerting. You know what it’s like. We have endless meetings where nothing seems to happen. Meetings for the sake of it.
‘Being at home would be so much better. I would be able to shape my own workplace. Have things where I want them to be.’
‘Or lost somewhere in your chaos,’ Tim jokes.
‘Think about it,’ I say, keen not to be distracted. ‘There would be no politics to navigate. I would just have to do my best work and everyone would be happy. What would it matter if I didn’t get dressed? No one else would know. Just you and me.’
Tim stands up, takes my hand and leads me to the sofa. I put my head in his lap and he strokes
my hair. I feel calm.
‘I know this is the right thing to do,’ I whisper. ‘I could be myself.’
CHAPTER EIGHT
June 2016
It is 23 June 2016. The day of Britain’s referendum on EU membership and I am at my most stressed. I have been home from hospital for a few weeks and have been starting to feel better. I have been going through my therapy notes, trying to get back on track and going towards allowing more people into my life. After a failed attempt with a personal trainer, I have begun occasionally attending yoga classes held by a friend. I hope to see her more often socially too. She is calming and being with her makes me feel the opposite of jittery.
There are things I haven’t managed to do. I can’t yet stick to any kind of routine and my self-care skills aren’t getting any better. Cleaning my teeth in the morning is hit-and-miss and sometimes at lunchtime I will remember I haven’t done it. I rarely brush my hair unless I have to go out to a meeting. I’m not getting outdoors very much at all. Walking the dogs is something I too often leave to Tim. I’m sleeping OK, but haven’t been getting dressed every day and haven’t been finding time to relax regularly. I still struggle to eat, but usually manage one relatively healthy meal per day. All this causes me to colour in inadequate.
My journey towards a better me, however, seems to have been put on hold by my intense interest in the referendum. For weeks I have been researching every aspect of it. Scouring obscure political websites, checking the polling statistics several times each day, joining Facebook groups for each side. While no one else seems prepared even to consider the possibility that Britain may vote to leave, I am convinced – to the core of my very being – that we will. No one will listen to my fears.
Everyone believes the Remain camp will prevail – the pollsters, the bookies, the newspapers, my friends. Everyone. I know they are all wrong and feel sick when I think of the uncertainty leaving the EU would bring. I can’t think why anyone would want to vote to leave and am hurt that no one will take my fears seriously. I colour in confused and resentful. This isn’t just about – or even primarily about – a political view. It runs deeper than that. It’s about change. I don’t remember a time we weren’t part of the EU. The idea of not being so is too different for me to be able to contemplate.