Five things I learned from living with a chronic illness

The response to my ME and me: Living with Myalgic Encephalomyelitis post has been so overwhelmingly positive and supportive that I want to write more about living with a chronic illness. One of the recurring themes of the last thirteen years has been discovery – I’ve learned so much about myself, the world and my place in it since experiencing life from a different perspective.

It’s easy to trot out cliched advice like “Never give up!” and “Stay positive!” but life isn’t always that simple and often that advice is nothing more than  a demand for you to experience your illness or disability in the manner most palatable to society while ignoring your own needs.

Learning to truly believe the five lessons listed here was a hard-won battle for me, but with each new bit of self-acceptance came new strength and new joy. I’m not going to pretend to have all the answers, but hopefully I can offer some food for thought.

You don’t have to fit the recovery narrative.
It would be amazing if everyone who was sick or injured could follow a simple set of tried and tested instructions and get better. It would be even more amazing if this looked exactly the same for everyone and happened within a predictable time frame. This is exactly how it happens for some people, but others may be living with the effects of illness or injury for many years, or even their whole lives. Many people live with degenerative conditions, so it’s not just a case of not getting better – it’s a case of definitely getting worse. If you don’t fit neatly into the recovery narrative box, it doesn’t mean you’ve failed or that you’re weak or not trying hard enough. Not everyone gets better immediately, or at all. Your experience is still valid and you are still deserving of acceptance. That also means accepting yourself.

You aren’t a professional inspiration.
Speaking of narratives around illness and disability, everyone’s heard of the inspirational disabled person, whether it’s the amputee who climbs mountains or the gold medal winner at the Paralympics or the person who lives with a chronic illness and is able to work full-time. Apart from it being totally condescending to take an “If that person can do it, I – an able-bodied person – can do ANYTHING” attitude (yuck!), it’s also unrealistic to assume that everyone with a disability or chronic illness is affected in the same way or lives with the same opportunities and limitations. Obviously I’m not in any way trying to minimise the achievements of people who manage those big, visible, awesome things, but it’s important to remember that if you can’t climb mountains or win medals or work full-time (or at all), that’s OK too. You do what you can do. Your value is not contingent on how ‘inspirational’ you are to people who will only ever see you as a one-dimensional representation of a concept they don’t even understand.

You don’t owe anyone ‘fine’.
I tend to focus on what I can do, the things that make me happy, and all the amazing blessings in my life. If the options are “Oh my god, this is terrible, the world is terrible and everything is going to be terrible forever” and “This is tough, but I can get through it”, I’ll go for the second option every time. It’s how I cope and it helps me make it through the hard times. The problems begin when I apply this to how I communicate with other people, specifically when I try to cover up when I’m struggling or pretend to be coping better than I am. It’s OK – in fact, it’s healthy – to learn how to say “I’m having a rough time and I need support” or “I can’t manage that today, but thanks for inviting me”. You are under no obligation to explain your life in detail or to justify yourself to anyone, but you’re also under no obligation to pretend to be doing better than you are at any given time.

Sometimes the easy way is the best way.
I adore cooking. One of my favourite things in the world is creating delicious, healthy recipes, making tasty soup or chilli to freeze for a week’s worth of lunches, and experimenting with ingredients I’ve never tried before. I even enjoy food shopping because I get excited thinking about all the things I’m going to make with the bargains I find. A lot of the time though, I’m simply not able to trawl around the shops or stand up in the kitchen for long enough to cook, so I rely on more accessible options. On those days (or weeks), I’m not microwaving a  bowl of tinned macaroni cheese as an alternative to cooking an amazing home-made pasta bake. I’m eating it as an alternative to eating nothing. I’ve started referring to food as accessible rather than convenient, and it has made such a different to how I think about it, as well as to how other people understand my situation.

You are allowed to have fun.
I’d hazard a guess that almost everyone living with a disability or chronic illness has experienced sharing a photo of a day out with their family, or talking about a party they went to, and had people respond negatively, assuming they mustn’t be that sick if they could visit the beach, go for a walk or have a night out with friends. When people respond that way, they don’t understand the whole situation. They don’t get how much pain you were in during the car journey, how difficult it was for you to walk to the place where you took that photo, how many days or weeks it took you to recover from that one late night, how much you have to sacrifice to have those happy days. Virtue is not earned through suffering and self-denial, and it’s not suddenly your fault you’re sick because you went to a concert that one time. Everyone needs to kick back and enjoy themselves sometimes – it’s good for the soul – and if someone judges you harshly for that, maybe it’s time to reconsider how much space they deserve in your life.

ME and me: Living with Myalgic Encephalomyelitis

Sometimes I mention here about being sick, being disabled, living with a chronic illness, my body not working etc but I don’t go into detail about why. This is because any time I talk in a public space about what’s wrong, I get hit with a heap of unasked for ‘advice’ and a barrage of “I read this thing about…” or “I heard about this one guy who…” or “My cousin’s next door neighbour’s friend had that and…” and honestly, it makes me want to fucking set people on fire.

That said, I like to provide context for the things I mention here, so I’m going to do that now. Even though it’s difficult as hell for me. Even though I’m steeling myself for a bunch of comments that make me want to throw my computer and then myself out the nearest window. It should go without saying that comments containing unasked for ‘advice’, an amazing ‘cure’ that totally works, or links to that one thing you read will result in you being set on fire. I don’t care how far away you are. I have my methods.

For the last thirteen or so years, I’ve been living with ME, which stands for Myalgic Encephalomyelitis (which I can just about spell without looking it up). You might not have heard of it because although it’s been around, and known about, for a long time, it is often referred to by the dodgy-as-fuck name Chronic Fatigue Syndrome, or CFS, which was invented in the 1980s by psychiatrists who liked to make money and medical insurance companies who like to save money. Referring to ME as Chronic Fatigue Syndrome is reducing a complex physiological condition to one unquantifiable symptom, which is not only inaccurate but dismissive and dangerous, although it does make googling it a hell of a lot easier. Yep, I am very fucking political about this. But hey, at least some countries are making progress (please make this happen in the UK soon!).

ME is not a psychiatric, behavioural or psychosocial condition. This means that it cannot be fixed with talking therapies or any form of psychiatric or psychological intervention. Misdiagnosis is not a good thing. Frustratingly, a horrifying but much-hyped example of shocking non-science (which has very recently been debunked – yay!) informed a lot of media coverage, medical approaches and policy relating to the condition. Hopefully things will get better for those of us living with it as the medical industrial complex around the world catches up.

It isn’t currently known exactly what causes ME, although there have been lots of theories but sadly very little actual research. What IS known though, is that it doesn’t affect everyone in exactly the same way for exactly the same length of time. Some people get better after a few months or a couple of years, some people get better after a longer time, and some people don’t get better at all. Generally, the longer you’ve been ill with it for, the lower your chances of making a full recovery – although some people do.

Something that massively ups your chances of getting better more quickly, or at all, is if you can completely stop doing everything during the acute onset stage and then gradually build up activity very slowly over a long period of time (this is NOT the same as Graded Exercise Therapy, or GET, which is at best useless and at worst seriously dangerous). This is really nice in theory, but when you literally do not have the option to do this because you can’t live without money, it throws a bit of a spanner in the works. For context, I became ill 13 years ago. This year, we could afford for me to stop having a job. So yeah. There’s some cold, hard context for you.

Because there’s a lot of snake oil and bullshit being thrown around by unscrupulous shitstains who like to extract money from vulnerable sick people, because people get better at different rates, because everyone loves a recovery narrative and tends to assume that correlation implies causation, you might have heard about people being ‘cured’ by doing stuff that doesn’t make any actual sense and can’t be in any way medically or scientifically explained. This is very frustrating because it detracts from the very real need for genuine research. So instead of suggesting that I eat more blueberries, just force myself to go running (HAHAHAHA!), or reprogramme my braindoodles with magical hypnowaves, please go and set yourself on fire. Thank you.

In terms of what ME does to a person, there are varying degrees of severity. Symptoms also tend to fluctuate, so things can be “meh, sort of vaguely OK or at least not totally imploding” one day and “holy fuck someone pulled my skeleton out of my skin and ran over me with a steamroller” the next. On a good day, I feel like I’ve been awake for two days straight taking acid at the gym and during the forty mile sprint home I got hit by a truck full of sedatives and pain. On a bad day, the truck full of sedatives and pain is pretty much driving over me then reversing again, repeatedly. And the driver is throwing shit out the window at me. You’re welcome for that mental image.

There are symptoms other than crippling exhaustion and constant horrendous pain, but they’re less fun to describe. I have allergic reactions to everything and nothing, leaving my skin often looking like someone set it on fire and put it out with a pitchfork. My ability to see fluctuates wildly (muscles control eye stuff and ME is shit for muscles) so sometimes my glasses are great and other times they don’t do a damn thing. My body forgets how to do really basic things like digesting food properly. If I get a cold, it full-on kicks the shit out of me for weeks, sometimes months. My brain fails and I forget how to word (yes, I am a writer and yes, this is a massive bastard of a hurdle to get over). My balance is screwed. Bright lights and loud noises hurt (and there you were thinking I wore sunglasses all the time cause I was famous). The world is an overwhelming sensory explosion of argh. Walking is (delete as appropriate on any given day) difficult/very difficult/what the fuck are you even trying to do/impossible, and it is always painful. I have walking sticks, but to use them I need a certain level of energy, coordination and upper body strength, so I can’t actually use them when I need them the most.

On top of that (Ha! There’s more, because of course there is) my back is a total fucking mess due to an injury that no-one took seriously for a bastarding decade after it happened, even though I was literally in hospital immediately after it occurred (although, to be fair, making sure I wasn’t having a fatal brain bleed was kind of the priority then). My spine is bent in a bunch of ways it isn’t supposed to be and everything healed in the wrong place, so the bones are wonky and nerves get trapped all the time. Although it’s past the point of being fixable, degeneration can be slowed down and possibly even prevented with certain types of physical activity. But guess what ME makes it really difficult, often impossible, and frequently counterproductive to do? Yep. Most of those kinds of physical activity. I can still sometimes do yoga though, so yay! Yoga also helps me not want to punch people all the time, which is a pleasant side-effect.

My knees are fucked up as well (I KNOW, I KNOW), also from injuries that weren’t taken seriously at the time and that have since healed wrongly and aren’t repairable. Luckily, before having ME, I spent a lot of time in the gym and doing other cool shit with my body to make my muscles big and awesome. I am endlessly grateful that I still have the strength I have. Also, using walking sticks is incredible exercise for the upper body, if you’re ever looking for a change to your fitness routine.

Living with all that stuff, in a constant state of financial instability due to all that stuff affecting my ability to do almost any job (“financial instability” is the world’s biggest understatement, but that’s another story), and having had the misfortune to become ill just at the point when the last Labour government had decided there was no such thing as sick people and therefore no financial help was given to those non-existent people, got my brain hardcore fucked up. This is getting pretty long already so I won’t go into detail here about the effects it all had on my mental health, but it’s miraculous that I’m still alive at all and my husband, parents and close friends deserve a lifetime supply of cookies for helping keep me around (mental health services in the UK deserve to be set on fucking fire though, or possibly just given better funding).

FINALLY, and with a huge amount of assistance from advocates who I swear are angels in disguise, I managed to claim Personal Independence Payment less than two years ago. This enabled my husband and I to get a home to rent that is actually accessible to me. It also enabled me to get a blue badge for my car, which means I can park in more places and have been able to claw back a little bit of the independence that being sick/disabled/bodyfailed took away from me. The process of applying for PIP, including the degrading and quite frankly terrifying assessment, was so traumatic that I remember very little of it due to numerous dissociative episodes. Those were fun, if you like returning to conscious awareness covered in your own blood because you sliced your arms and legs open at some point during the three hours you have no recollection of. What even is time anyway, right? My braintubes are much better now though. I promise.

Here’s the kicker. I might get better one day. I might get slightly better one day and a lot worse the next and a little bit better again a few months after that. Or I might be living with this for as long as I’m living. I look after myself ridiculously well and while I will always carry a spark of hope that one day this illness will be accurately understood, treatable and ultimately curable, I refuse to keep my life on hold waiting for that day.

You don’t often hear stories from people who have had ME for years because those are difficult stories to listen to from people who fall through the cracks and don’t get to tell them. The government, the mainstream media and a large proportion of people I share a country with constantly reiterate the message that I, and people like me, are lazy, worthless, drains on resources who would be better off dead. Every time we try to speak up, that’s the noise we have to raise our collective voice above and it’s fucking difficult. Especially when you’re so fucking wiped out you actually have to concentrate on breathing because your body keeps forgetting to do it until you almost pass out then gasp for air. That’s some scary shit.

I did not do this to myself. If wanting, trying, working, fighting, needing, wishing, or anything else within my power could make this better, I would have got better the day I got sick. I was super fit, healthy and active before all this. I was working full-time, overtime and then some. I was one of those assholes who got up at 5am to go running before work, ate food-prepped salads for lunch, and could get two hours sleep and be perky as anything the next day. I was a “Wow, where do you get your energy from?” person. Yeah, you know those people. That was me. Sorry.

My life and my body may have changed but the core of my being has not. I am determined and strong. I am grateful and hopeful. Sometimes I am frustrated and a bit defensive and I swear a lot. I have always been this way. I am neither an inspiration nor a cautionary tale.

I am one of many and I refuse to be silent.

If you want to learn more about ME (please do, so you can be an awesome ally!), I recommend these links:

  • The Canadian diagnostic criteria: This is the business! No “oh well, we’ve ruled out cancer and we’re not sure what else do to with you” here. A serious, detailed, medical diagnostic tool that, although not exactly a wild read, is SO worth looking at.
  • ME Association: A helpful resource based in the UK, which offers phone and email support to patients, their families and their caregivers.
  • The Hummingbirds’ Foundation for ME: This site contains a wealth of incredibly detailed and well referenced documents. Sadly, the wonderful human who created it passed away recently, but thankfully the site remains in existence and continues to help people, which is the perfect tribute to her.

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.