Seven Times You Are Perfect

When you’re cracking your knuckles, not by bending your fingers back or crunching them forward, but by pulling and twisting at the joints. It makes my skin crawl and I shoot you that look, a sideways glare with a raised eyebrow. You say sorry, then crack one more knuckle before you stop.

When I’m preparing food and you stand close behind me, sliding your arms around my waist and kissing my neck. I stop what I’m doing because it makes me nervous to be so distracted when I have a knife in my hand. You know how I get about knives.

When you’re carrying our ancient cat around and showing her things on shelves she can no longer climb up to. Even with all their size and strength, your arms can protectively cradle this tiny, fragile creature and I remember my mother describing you as a gentle giant.

When I’m feeling anxious so I curl up next to you to hide from the world and you read the internet to me. It doesn’t matter if the stories are about animals who find their way home after being lost for months or unexplained mysteries of the wilderness. What matters is your voice. It’s like valium and the kindest electricity.

When you’re wearing headphones and you don’t realise you’re singing along to whatever you’re listening to, but you are and it’s beautiful. You don’t sing in front of anyone and I don’t play the piano in front of anyone, but we talk about doing these things together, away from everyone else, just for us.

When I’m lying behind you in bed and I rest my face against the warm expanse of your back, comforted by the absolute solidity of you. If truth could wrap itself around muscle and bone, it would settle in the structure of your shoulders and all that they have carried.

When we’re driving away from home and I ask for the fourth time if you’re sure I locked the door because I don’t remember doing it, and for the fourth time you say yes, without a trace of impatience. Even though I do this every time we go anywhere. Even though I never forget to lock the door.

When I Say I Can’t

when-i-say-i-cant

When I say I can’t do something, sometimes it means just that—I am literally not physically capable of doing that thing, no matter how much I want to or how hard I try. Sometimes it means that while I could possibly force myself through the ordeal, with the help of stimulants and painkillers but still exhausted and in extreme pain, after days of bed rest to prepare for the exertion, the effect that will have on me afterwards is not worth it.

This is the effect it will have on me afterwards. I will be profoundly exhausted to the point where sitting up, walking and being in an environment other than a dark, quiet room are extremely difficult, and preparing food for myself, washing my hair and body, and getting dressed are most likely impossible. The sensation of hearing any noise above a quiet whisper or looking at light brighter than what creeps in through the crack in the curtains is physically painful. This makes any form of communication, in person or at a distance—even talking on the phone or using a computer—uncomfortable at best and impossible at worst.

I will be in so much pain that I cannot sleep for more than a couple of hours a night. That, combined with the extreme exhaustion, means that I’m running on adrenaline and very little else. This perpetual state of fight-or-flight, the feeling you get when you’re leaning back in a chair and it tips into instability, triggers constant, intense anxiety. Because the anxiety is not about anything, it cannot be talked through or effectively managed with tools that are used to reduce anxiety caused by emotional factors. It is just there. The longer it’s there, the more frequent the panic attacks and dissociative episodes become until pretty much every waking moment is one or the other, or both.

What I desperately need to do in this situation is sleep. A lot. Deep, restful, restorative sleep. This does not happen for all the reasons explained above. The longer it does not happen for, the worse everything gets until I reach a point where I can’t sleep, can’t eat, have no idea what’s going on and am absolutely terrified, all while being so exhausted I have to concentrate on breathing and in so much pain that there is no respite from it no matter what I do.

Life does not stop because of this. Things do not stop needing to be done. The world does not become quiet, dark and undemanding for me. Even when I am able to say no to everything and take the time I need to begin to recover from whatever put me in this state to start with, it does not improve in a matter of days. It takes weeks. Sometimes it takes longer. During that time, I question myself. I feel lazy, guilty, worthless, useless. I most likely have to say no to things while struggling to explain why, managing only “I can’t” or “I’d be a mess afterwards” and people generally don’t get what that means.

I have spent more than a decade with no choice but to knowingly do this to myself because I had to work in jobs that required it. Financially, I had no other option. None of this is because I haven’t tried hard enough to get better or have lacked a suitably positive attitude or don’t know how to look after myself. Trying hard and getting through things on attitude alone are all that has kept me going. I know exactly how to look after myself—the problem has been that my life has not allowed for it, even at the best of times.

Now I am lucky enough, and have sacrificed enough, to be in a position where I can say, “No, I can’t”. When I do this, it is not laziness or negativity or a lack of determination. It is a conscious choice not to live in hell. It is not avoidance or giving in to a fear of what might happen. It is self-preservation due to being acutely aware of exactly what will happen, based on what has happened, what does happen.

So when I say, “Things haven’t been great for the last little while”, this is what I’m referring to. When things haven’t “been great”, I will still occasionally have a good day when I can do a little more than I’ve been able to do on the other days, but these good days are not predictable and if I push myself too hard on not-a-good-day, I hit rock bottom again. This makes it incredibly difficult to plan things because while I might wake up one day and be able to do a little more, I cannot know in advance when those days are going to be.

For more than ten years, every decision I made was based on one question—”Can I do this?”. Not “Can I do this safely and without drastic negative consequences?”, but “Can I force myself through this somehow, no matter what happens?”. How I felt wasn’t even a factor. This became my natural state of being to the point where I forgot how to consider how I felt. Whether or not I wanted to do something didn’t even come into play. I forgot not just how to consider that, but what it meant.

I am gradually learning to think about how I feel and what I want again, to remember what those words and thought processes mean, and that they are allowed to factor in to decision making. I am slowly getting to grips with saying no, with remembering that I am not lazy or worthless if I can’t do something. I am getting better at shutting down conversations where people try to tell me, often in subtle ways, that this is somehow my fault, my doing or my choice.

I wish I was better at explaining all this, that I could do it concisely with one short sentence instead of fifteen hundred words. Or maybe I wish I was better at remembering that I don’t have to explain it, but I’m not there yet. I still live in a world that requires justifications, that says, “It could be worse”, as if only the one person on the planet who has it worse than anyone else is ever allowed to be anything other than fine. I still live in a world where the government, the mainstream media and everyone who listens to those things believes me, and people like me, to be nothing more than a waste of space and a drain on resources. It is hard not to feel anger about that, but anger requires a lot of energy and I have better things to do.

Most of the time, I am invisible because I exist behind closed doors. People do not see me unless I’m physically able to be in human company. On those days, I do not look sick. I am an expert at the casual rest stop, the undetected lean-against, the cover-up of under-eye circles and too-pale skin and the effects of my own immune system turning against my body, and the disguise of shaking hands and blurred vision. My autopilot, the detached, robotic thing that smiles through my face and says “I’m fine, honestly”, is finely tuned. For someone who prioritises honesty in almost every aspect of existence, I am an excellent liar when it comes to answering, “How are you?”. I can even manipulate myself into believing the things I tell other people. I know I do it and I do it anyway. But I shouldn’t. And I shouldn’t have to.

I’m not even sure why I’m writing this other than I need to get it out of my head. Maybe someone else who lives in a similar situation will see this and feel less alone. Maybe someone who doesn’t believe that a person can seem alright on the surface and be invisibly falling apart will see this and realise that their assumptions are flawed. Maybe I’ll read it tomorrow and hate myself for putting something so raw out into the world where people can judge me harshly and continue to believe that I’m weak, lazy and unmotivated, even though that couldn’t be further from the truth.

I don’t know. I just know that it needs to be said, so I’m saying it. I’ve said it. It is not for validation or sympathy or sad-face emoji responses. It is at least partly because this can no longer be the one thing I am willing to lie about. I am left wondering why the truth of this is such an uncomfortable, ill-fitting garment but also knowing that I will continue to wear it.

Now I Go For Walks And Find Castles

When athletes talk about breaking through the wall, they’re usually referring to the wall you hit twenty miles into a marathon or the wall you hit when you’re straining to lift more than you’ve ever lifted before, not the wall you hit when you’ve been walking for less than a minute. But that’s where my wall is. My wall often hovers in front of me and sometimes it collapses around me. My own personal tonne of bricks. My ominous, lightning-struck tarot tower. But what is a pile of rubble if not a challenge to climb?

I live in a suburb barely on the outskirts of the centre of town but because this is Edinburgh, where dormant volcanoes and chunks of mountain rise from the city, there is a forest park five minutes from my front door. Recently I have been exploring this forest park, slowly and in small sections, savouring every moment because you only get to go somewhere for the first time once. I take different paths each time with no idea where each one leads, relying on a sense of direction that is not calibrated for roads but never fails in nature. Today, I climbed not only my metaphorical fallen wall but also a literal hill.

It was a gradual incline at first, then a steeper one, but I’m tenacious and I love a good view so I climbed. The people I passed on my way likely thought I was at the end of a long and strenuous run, not the beginning of a comparatively short but still strenuous walk. I get embarrassed being out of breath in front of people. It feels like failure. Then I remember that they see me for only a few seconds and I probably don’t even register on their radar. My heart that always beats a little faster than it should, leaping sharply at the slightest provocation but barely speeding up further even when I’m gasping for breath and dripping with sweat, was dancing in my chest as I reached the top, rounded a corner and encountered a castle.

I’m not speaking in metaphors here. There was an actual castle at the top of the hill. I knew it existed but I didn’t realise that was where it was or that I was going to see it today. I stopped to catch my breath and take a picture. I always take pictures when I’m walking because on the days, weeks, months and years when I can’t walk I look at the pictures to be reminded that there are times when I can. Chronic illness can drop you into a bizarre wonderland without warning but so can anything else and sometimes castles appear out of nowhere just when you need a little bit of extra magic in your life.

My activity tracker buzzed on my wrist and the voice of its accompanying mobile app interrupted the music playing through my earphones to give me an update on my distance and speed. Those numbers are good to hear but it could say nothing more than “You are putting one foot in front of the other” and that would be enough for me. I caught myself wondering if I was feeling better, which is a strange state of questioning for me because I have no reliable frame of reference for ‘better’. When other people ask me that, the only way I know how to respond is to say that today I am able to do this, whatever that means. Before, when I had a good day or a good week, there was a little voice in my head that whispered, “This is it, this is the beginning, you’re going to be fine now” and when the next crash came, I hated that voice. Now I let it speak and I reply, “Maybe. Maybe not. But maybe”. I have come to recognise that voice as hope and hope should never be silenced. This is not a fight nor a struggle. There is no against. There is only with.

I looked at the screen of my phone to see how many steps I’d taken and noticed the summary of last night’s sleep. I had been in bed for six hours. I had slept for less than three because my back and legs ached, relentlessly, violently, and the feeling of my nerves and muscles imploding kept me awake. Pain cannot be measured by an activity tracker or displayed by an app and it is an ever-present, impatient, short-tempered teacher. For years, I thought I had to beat it into submission. Now I know that I need to listen to it, to learn from it and to finally understand that it is not a punishment nor a gift. It is simply circumstance.

I wandered beneath the gentle shade of yew trees, planted years ago to allow the lady of the grand house nearby to walk a sheltered path to the castle and I felt history wrap around me, heard the echoes of the steps of everyone who has ever walked under those trees. Walking today, being able to walk today, was not a victory over misfortune nor a triumph over suffering. It was a victory of love, a triumph of acceptance. That’s true of every step, ever, and walking facilitates a unique kind of spontaneous meditation that I always welcome when I’m lucky enough to experience it. It feels like something that has been blocked and caged is finally free to flow. It feels like my mind is open wide.

I remembered a boxer I met at a physiotherapy gym over a decade ago. I’ve written about him before. The one time we met, he strapped gloves to my hands and put on pads so I could hit something, anything, as much as I needed to. And I did, because I needed to so much. Just before everything went black and I had to sit down on the floor of the gym because I was in no way well enough to exert myself like that, he said “You’re an angry little thing, aren’t you?”.

As I made my way onto the final path towards the exit from the forest park, I quietly answered the boxer’s question eleven years late. I was angry, so angry for so long, but I’m not angry any more. Now I’m grateful. Now I go for walks and find castles.

Strangers Came Closer, Danced To Our Music and Stopped Being Strangers

I could write about the fire festival itself, but that seems too obvious and I haven’t managed to corral the right words yet. I might not ever. I don’t know that there are the right words, but on the first Saturday after Beltane there is the traditional picnic. Traditional in that it’s always just happened at the same time every year and now everyone has come to expect it so we all show up and it continues. We get to unwind together after The Night is over and enjoy the beginning of a summer that we kind of not really but sort of do like to believe we had a hand in instigating.

I was curled up in a gigantic pile of blankets, my head resting against a friend’s back, a bag of watercolour paints and home-brew mead at the edge of my field of vision. It was wind-chill cold but the sun was there.

There was a table near me because this year a few people suddenly had the idea of bringing a table. It had been carried across town on a bus then across the park on someone’s head and it held, among other things, a hand-cranked ice-crushing device. People with smudges of green paint on their faces and polymer clay horns on tweed flatcaps served cocktails from tea pots into biodegradable corn starch cups.

Because we’re good at sharing and tend toward generosity, more and more people arrived with food. Something for yourself and something to give. There was vegan gluten free bannock and a huge metal pot filled with freshly made vegetable soup that had been carried through town. There would have been too much cake if “too much cake” was a thing that existed.

There were drums and people playing them, sometimes improvising and sometimes playing rhythms that are unique to us, beats that others might recognise but that we know somewhere deep down in the pit of our collective soul. Other people were spinning fire, juggling, climbing on each other’s shoulders. More were curled up together on a messy patchwork of fabric and grass, passing bottles back and forth, boxes and packets of food around overlapping circles.

Strangers came closer, danced to our music and stopped being strangers. I woke up this morning with glitter still in my hair. This is what happens. This is how you find yourself. This is how you get here. This is why you stay.

Smoke Still Rises

It was almost thirty years ago.
Almost a lifetime for me.
Four lifetimes for you.

The day my parents told me, we had been to the museum to look at the dinosaurs. I had stood next to replica skeletons and marvelled at their size, wondering what it would be like to have a triceratops as a pet. I had touched fossils, trying to grasp the meaning of millions, the feeling of that much time passing and something still being left behind. Something still surviving, even though it hadn’t really survived. Even though it was only stone now, ghosts in stone.

I had a new pen, a souvenir from the museum. It was red and white and instead of having a lid that came off or a button on the end that clicked, it had a sliding mechanism that allowed the entire body of the pen to shift and turn like a machine. I don’t remember which of my parents spoke, but I remember them both kneeling next to me. I turned the pen over and over in my hands, memorising how its mechanism felt and wanting to break it. I didn’t break it. I used it to write a letter to you.

I described the night before you left, in case you didn’t remember. We had built a fort from couch cushions and thought that if we hid well enough, no-one would find us and you wouldn’t have to go. I wrote about how the lorry had crashed into the back of the car, about how you weren’t wearing a seatbelt and had been thrown through the space between the two front seats and how your head hit the dashboard so hard that you died straight away. They said you hadn’t felt a thing so I was worried that you wouldn’t have known how it had happened if someone didn’t tell you.

I carefully tucked the letter between the logs on the fire and after it was lit I ran out into the garden to watch the smoke rise from the chimney, carrying my words up to you. I was still at an age when life and death could be equated to altitude. I made a promise to you, so important that it needed to be spoken out loud.

I promise that I will do everything. You can’t do anything any more, so I will do everything. For both of us. Forever.

Fossils are still ghosts in stone and I still write and smoke still rises. And I have kept my promise.

To Someone You Eat Pizza With

Like when someone you haven’t seen in months doesn’t notice how much weight you’ve lost and emptiness tastes so much better than food for a few days after.

When shoulders that can hold up the world seem somehow less than delicate wrists with a child’s watch, hanging loose on bones that still bear the never-quite-healed cracks of too many fractures and the memory of jeans that slid over narrow hips and the gap between waistband and concave stomach.

When you laugh about how sweet you take your coffee because you used to count it as food, the only calories you will allow yourself today, sixteen in each spoonful of sugar, and the habit never totally left, even after you started eating solid things again.

Standing in front of the mirror, breathing in, trying not to long for xylophone ribs and telling yourself over and over that you shouldn’t miss the spikes and troughs of skin stretched over skeleton.

Repeating the mantra it is better to be healthy and trying to resist the urge to stealthily spit the concept of health into a napkin and hold it under the table, rolled in cold spidery hands until you can safely dispose of it without anyone noticing.

And you know you could go back, so easily, any time you wanted but you also know you won’t. You grieve for the loss of the person you were for so many years and the person you might have been, if only. This is not a good if only.

When you refer to how you used to have an eating disorder and drape what you hope is a casual smile across your face because you don’t think anyone could look at you and believe there was ever a time in your life when you didn’t really eat. Because you do eat now. Of course you do. Obviously. Except for the times when you don’t.

When you get scared of the space you take up so you cut the food on your tiny plate into miniature pieces, eat half of them and spend the next twenty minutes arranging the rest into the corner of a circle, a place that doesn’t even exist.

When you fix your eyes on the bathroom wall and refuse to look down in the shower because today you don’t want to see, but you still allow your mind to wander over the parts of your body that didn’t used to be there, telling yourself again that yes, this is worth it. No matter how much, on some days, it feels like it isn’t.

When he wraps his arms around you and says you’re so tiny and you know that he means it in comparison to his own broad shoulders and hands that easily encase the width of your back and not like the ache of tentatively expressed concern as he counts the bones of your spine with his fingertips again.

And if you ever need to be reminded why you left yourself behind and became something less like a ghost and more like a real person with all the solidity that involves, you look in his eyes and convince yourself to accept the beauty reflected in his smile that no mirror ever allowed you to feel.

Medical Records and Memories as a Winter Landscape

Seeing your own medical records feels surprisingly impersonal. Maybe it’s because some details fell off the edge when you moved from one part of town to another and had to register with a different doctor because you were no longer in the right catchment area for your previous one. Maybe it’s because there was a clear severing of your past from your current life when you moved from one country to another and notes from doctors and hospitals didn’t travel with you. Maybe it’s the small inaccuracies, the moment when one eating disorder became labelled as another because of a typing error or a missed word somewhere along the way and ED-NOS with features of both bulimia and anorexia became bulimia-on-its-own, which you never actually had. Even now the concept of binging makes your heart thud against your ribs because your purging in a past life took the form of an attempt to rid yourself of what you actually were, not what you had consumed.

Or maybe it’s the sensation of seeing, in black and white, the progression from an observation of symptoms to a diagnosis to a chronic primary something-or-other as the confusion of your body overtook the confusion of your mind before your mind eventually followed suit and you were given an opportunity to learn new acronyms for your self-destructive coping mechanisms. Maybe it’s because when you were handed sheets of paper that contained this information, it was easier to believe that you were reading about someone else instead of feeling guilty for the body that survived everything you put it through but when you finally decided to give it freedom, it chose instead to exist in a perpetual state of dysfunction. It’s so easy to give in to the misconception that your body did this as an act of revenge, to spite you, rather than to accept the mundane truth that there is only so much damage that can be caused by injuries and viruses before the situation goes from “When you get better” to “If you get better” to the alternative that doesn’t bear thinking about.

You remember your last session with the one good therapist when you were twenty or twenty-one and he read out loud his notes from your first session and asked how you felt about that person. You said, “That’s not me. That’s someone else”, and he thought you meant it because you had become so much stronger but you actually meant it because you had never been able to relate other people’s explanations of what you were and how you might have become those things. You meant it because for all your self-awareness you had never wanted to believe how far you had fallen. You still don’t.

Now the fractures and blunt force traumas of your past life and the details of the times you lost yourself have been erased and you are left with only a few short years of history to comprehend. It still shakes you to your core, a place you once believed was populated with strength above all else. You tell yourself stories of things that are more beautiful for having been broken but you don’t believe a word you say. You have learned to accept the scars on the outside, even as new ones have appeared, even as you have put them there yourself, but you cannot forgive the scars on the inside and what they have turned you into. You do not hate yourself. Instead, you are disgusted. You start to list the ways in which you are still strong, still determined, but it turns into a list of ways that this is somehow all your fault and you can never build high enough walls to contain yourself.

You remember the physiotherapist who told you that you had to learn to stop because your body couldn’t handle what you were doing to it in the name of making miracles happen and you remember being so scared of stopping in case you were never able to start again. You also remember the ex-professional boxer you met at the physio centre who strapped your hands into gloves then put on boxing pads and told you to hit him until you felt better. Even though you could hardly stand up, you punched and punched until he was taking steps backwards to lessen the force of your rage. When you were doubled over, gasping for breath and the world became dark around the edges, you finally felt better. He said, “You’re very angry”. You said, “I know”. It didn’t cross your mind that this wasn’t a positive thing but it surprised you that, for once, someone else noticed. It also didn’t cross your mind that angry was something you had every reason to be, because anger is hot and loud and you are ice and silence.

You slide another copy of your medical records into another envelope to send to another government office and welcome the familiar freeze that creeps in around your edges, the brittle frost that allows you not to feel. Now the memories of how your body and mind were twisted and warped have become a cold garden of bare trees that you stumble through, arms wrapped around yourself in apology as you try not to take up space. You stare at the ground and still your breath as a dead branch cracks underfoot and the sound splits the air like a gunshot.