Living with depression

can't even adultA bout in the ring with the black dog this week. There’s never a winner so sport metaphors are fundamentally flawed but it does feel like a fight rather than a dance. In reflecting on what it is like to live with depression from inside it, I will use the first person. I don’t know what it is like for anyone else and indeed this illness is fundamentally isolating, so it is doubly hard to create any sense of connection at all from within it, let alone with my fellow travelers. Also, I chose first person to remind us both that this is a moment in time that I want to share with you as honestly as I can – not a story ‘about a friend’ or as an academic survey or a summary of therapy and help options. All these things already exist elsewhere and by people better qualified than me, I’m just someone living with depression who this week can think of nothing more useful or honest than describing what that is like.

I’m crazy to tell you I have depression

By the way this is not sympathy fishing or for pity or some kind of release for me. After all I’d be crazy to tell the world I have depression. Who’d hire someone like that or be friends with them!?  Well apart from that, from inside this place, those are not emotional states or exchanges I require. They don’t make any sense in here. I’m motivated because I know other people are curious about what it is like and generally they’re too polite or thoughtful to ask (or of course they have their own journey in these lands). In this place I am not verbally capable of answering and generally I work hard to hide this experience. This time I am doing something different. I’m telling the truth as gently and carefully as possible, but the truth nonetheless. If you’re uninterested in reading, I understand completely. I’m uninterested in continuing to experience this, so you have my sympathy.

Living through a depression is for me an experience of involuntary retreat. I can see my normal self at a distance. I have some limited access to the positive emotions of that person however not very much to the positive ones. I know I’m eating delicious food and it is a beautiful day but there is no connection to the sensation of pleasure or the emotion of joy. The bright colours of my clothes feel grey. They are part of my camouflage to try and act normal, to get by in the normal world.

A hollow world

My world today is hollow, grey and has no taste. I am become a meaningless burden on society and the earth. My body is sorrow and I am dissolved into nothing. Through that umbilical thread that connects me to my normal self, I can see that this hurts those who love me and that they’re reaching out, trying and wanting to help me. My normal self feels guilt for their pain and shame at this involuntary weakness. From where I am now, I brush it off. I smile (yes, I know it looks fake but I’m trying ok) and say ‘it is ok, I’m sure it will pass soon’ or some such distraction. It is a white lie that makes my normal self feel a little better about the cleanup she’ll have to do when it is all over and she hopes to still have friends. She’s aghast that I’ve decided to write this today but respects my decision and reasons to do so. She’s given her commitment to stand by it later, but I know that she’s worried about it. Selfish cow. As I like to remind her – we’re all in this together.

I am one, I am many

Does it make you uncomfortable that I’m speaking about parts of myself in the third person? It is something that helps me remember that the hollow lands of depression are not the only place I am a citizen. There are times when this me who survives these times of annihilation is just a memory too. When I didn’t have this technique, thoughts of suicide were common inside this place. After all the normal me was completely lost then in the maze. When no joys can be felt or even remembered, the hollowness that stretches out is unbearable.

Compartmentalising things is useful and so is keeping chunks of time in short bursts. There can be no far horizons in this place. Keep to just now as much as possible. For me this means the routines of life need to be honoured. Gentle exercise, scheduled tasks, as many as possible of the responsibilities of normal life need to be maintained. My normal self knows that these all contribute to alleviating the length and severity of the bout overall. They also help in hiding what is going on for such useful purposes as staying employed. I do all these things and it is an autopilot setting. It is not infallible. It feels stupid, but normal me knows it helps. I’m no brave little soldier, I need my time under a blanket too, but just as easily I can stop and sit and the day will pass unheeded around me.

So many days gone by

That’s what I used to do before I understood what this was and what was happening to me. When I was little it was seen as “being moody” and not simply snapping out of it was considered a belligerent act of rebellion. I can’t begin to unpack that right now, irony is also too subtle for this state. It was a long time ago, so it doesn’t really matter, but in hindsight there were so many days where I was lost in the hollow lands. I wish I’d had some help sooner, but I had no way of asking for it, nor of accepting it had it come.

Help did eventually come in the unusual shape of the suggestion in my normal life to help others whenever possible. This simple thing ended up creating a radical shift. We could summarise it as ‘learning how to be nice’. One of the life-altering outcomes of this that effortlessly translates from normal life over into the hollow lands is that I got a dog. I wanted someone to love and care for that wouldn’t be too harsh about my failings as a human and I had no idea that I would forever after be the greater recipient. Even in the hollow lands, that little dog fearlessly and lovingly trots next no me, happy to walk if I walk and happy to nap under the blanket too.

I’m trying to find a silver lining in the dark grey cloud, and it would be that little dog. His love built the bridge that I use to travel back to normal land. He taught me that love can survive even in the hollow lands and there could have been no greater gift for me. It lead me into a happy future, where this is a place I only visit, not live.

Boldly go in your direction

keep-calm-and-boldly-goWe’ve talked about starting over and it is worth touching on that idea again, because the pressure is often to do Big Things. You know, Those Boldly go where no man has gone before expectations*. That’s fun for a while if you are an intergalactic adventurer, or a woman. (I mean I even got to make a pennyfarthing where no wo-man had gone before) but at a certain point, most of us just want some help with the basic “boldly go” part.  Those first steps or stumble in a new (for us) journey are their own bold adventure. It could be asking for help to plan an overseas holiday when you’ve never left the city but everyone around you is infecting you with their itchy feet.

Taking action in alignment with your own values put you back into the driver seat of your own life. Freedom is in being bold on your own terms. Maybe committing to a slow shift in your eating habits, or starting to go for walks again or maybe a gym session or saving money. Whatever it is for you, where you’ve had a hint of fear, or worry about what other people are going to say, or if you’ll look silly, or fail, or or or … well, that’s an opportunity for some bold baby stepping.

Boldly go (but in bitty bubby steps)

We yearn for big wins and particularly successful people who are used to achievement forget that starting over is all about starting small. By small, we mean really small. Simple. Two minute tasks, being mindful, remembering to make a choice rather than react. These are the baby-what’s the next thing I could do that takes me towards what I want? Take a little action, bitty bubby ones but bold, feel bold. You’re courageous! You’re brave! You can totally do this!

Be bold baby!

By the way, it doesn’t even have to be about fulfilling your dreams, maybe just do the things that are bugging you and that let you simplify that endless to-do list.

Sometimes being bold is saying “no, thanks.”

No to more commitments, things that serve other people, or things that aren’t helping you get your own stuff sorted. Maybe being bold for you is asking for some help (maybe from all those people you’ve already been helping all this time?) or be bold and be brutally honest with yourself about what is really important to you.

So muddle onwards in your own direction and boldly be yourself. There honestly is no one better suited to it than you.

*Like discovering new galaxies or intelligent alien life. No pressure, right?

Frozen in fear

Rabbit medicine image by Angela C WernekeHave you ever done something so weird and against your own self-interests that your best friend says to you “That was self-sabotage.” And you can’t help but miserably nod your head and mumble “I don’t know what came over me.” It was fear that came over you.

Fear that was stealthy, sneaky, predatory. Fear knows how to trick you and catch you and then let you be the agent of your own downfall. If you’ve felt self-sabotage, it is a particularly horrible feeling. Sometimes, despite our rational intentions, we act like the natural prey of the thing we’re most afraid of – a rabbit covering under the screamingly fast approach of the eagle’s outstretched shadow. In that cramped crouch we are calling ruin upon us.

Snuggle down little bunnies and breathe deeply here in the safety of our burrow, we will learn a different relationship to fear. We currently have a curse on us, we turned away from something big one day and when we glanced back we’d lost sight of that strength and sense of personal power that gives us confidence in normal living.  Perhaps you didn’t know how to stand up to a verbal bully, or you took a fall of some kind, it doesn’t matter you got left behind in something important. Fear has found your signal now and you’re the hunted.

The fear and danger of beginning

One of the richest hunting grounds for fear is in beginnings. Rabbits make a great symbol for beginnings – so fertile, so closely associated with spring. They’re good eating too and mostly without weapons or armour. So when we begin something new, there’s a tendency to dwell on all the ways we’re vulnerable and at risk. How do you approach being at risk? Lots of times it makes sense to do research on the risks and plan how to avoid or respond to them doesn’t it? A lot of times, too, our friends or mentors suggest that we “face fears head on!” Ah. Sounds reasonable doesn’t it? Sounds brave and tough and more likely to be successful than cowering. Well maybe that works for some people but if this doesn’t work for you here’s something else to try.

Not everything needs a fight with fear

Most of learning something new, or making a new beginning isn’t about fighting, it’s about accepting. A beginning means something is going to be different and any fear that shows up at that time is a great invitation to expand. If you’re busy fighting it, it can use the distraction to send a flanking movement around to sneak up on you, all that energy you’re putting out is going in the wrong direction. Perhaps instead you could invite it over for tea and cake and once it has settled in, let it tell you what’s going on for it. Your fear is, after all, the shadow of your dreams. Let fear join your team, let it have a place at the table to discuss strategies and ideas it has seen further than you have right now down the path you desire and if you’re not fighting you have a chance of growing together and becoming more than the sum of your parts.

Fear might be uncomfortable to have around regularly, but much better there in your lounge room where you can get hot under the collar together and work things through than behind you with a knife in your frozen back.

Image credit: “Rabbit medicine” by Angela C Werneke in ‘Medicine Cards’ by Sams and Carson (1988).

Travel resets the wonder button

Republic square PARISThe recent hiatus and travel provided some time to experience the broader world and consider the themes of happiness, belonging, compassion and so on from a perspective outside of my normal (narrow?) day to day. Being exposed to centuries of foreign culture for weeks at a time was thrilling and at the same time the flood of details was enormously overwhelming in person. That’s what’s nice about armchair travelling or documentaries – the focus is supplied, the details are managed, the experience is curated for you by the book editor or narrator. In person, the reality is that you’re in queues, desperate to find a loo (or to find the right change to use the loo), hungry, and/or transfixed by the fact that each street has different ornate light posts (or some other mindboggling thing that everyone else is able to walk past but you want to scream to the world “LOOK AT THIS!”).

It is of course an evolutionary survival mechanism that all animals have developed a way of filtering information to only that which is most likely of value to them. Humans have loads of biologically initiated filters. For example, we are good at depth perception and spotting movement (as for a long time we were a prey species) once we got the hang of tools we’ve worked to our strengths ever since. We create more tools that work mostly by combining our sight with our hands (every thought about the inputs and outputs of a computer?) rather than, say, through sound and other frequencies of vibration. Because we build all the things we use, we tend to reinforce our own preferences and strengths, we also send ourselves the message that we’re increasingly successful by this filtering. So to travel to somewhere completely different, where comparatively few things were familiar, was to bypass the existing filters and be opened up all over again to confusion, curiosity and wonder.

Wonder is exhausting.

Great, but exhausting. Confusing too, and when you come home you go through it all over again with things that you used to comfortable with and now you’re not that sure about. That’s also amazing (and exhausting). Before you know it the day-to-day of going to work intrudes and you find yourself back in the harness of being a wage slave, but this is the gift of travel. It is possible (necessary) to remember that we have a choice about the way we see and experience the world. It is not just fun to go somewhere else, it helps train our brain in remember that our filters aren’t truths. For us to find ways to solve the problems we’ve created in our worlds, the most useful thing to do is to think differently about it.

You would probably like to punch the next person who suggests to you that you “think outside of the box” about something causing trouble. I know I’d love to. It is useless. If we could, we would! So instead let’s share ways of learning to shift our perspective, and one of the critical steps to that is to realise what things actions or ‘realities’ we’re taking for granted, what we’re valuing and filtering for, then we can put those assumptions aside and invite in some wonder. A recent article talked about how cities, by their man-mad nature, reinforce some of our mental models and that this creates a (another) blind spot in how we face challenges. Especially ecological challenges.

The difference between watching a documentary about a city and being lost in the metro there is an experience of being ‘reset’, of being a beginner, a foreigner. How valuable it can be to know that you know nothing. We can be the best kind of stranger to ourselves and to others by sharing perspectives and becoming more than the sum of our filters. Let’s get wonder-ful together.

Itchy feet

travellingThere’s a meme going around along the lines of “imagine living a life you don’t need a holiday from”. That’s an idea with a lot going for it and ties into our themes here of happiness, gratitude, self-knowledge and meaningful living. And yet … I get itchy feet … I get curious about the world beyond my commute and I wonder what it is like to stand in a different ocean. I want to go somewhere … else.

I’m not sure then how to understand this urge. It builds, and over time it becomes discontent if I don’t acknowledge it. So much as our focus here is on seeking connection with happiness and using self-knowledge and connection with each other to establish ourselves, sometimes we must grow too, through the unknown, through the mysterious urges of seeking and exploring people, things, ideas and places that are, to us, ‘other’.

Do I contradict myself? Very well, then I contradict myself, I am large, I contain multitudes.
Walt Whitman

Then we come home and we integrate, we mull things over, we massage our sore and painful feet. It is not ‘better’ one way or the other, to travel or tour-ist, or to wander half-lost and half-found. It just is and for each of us our own journey is inspired by itches of all kinds. Some we decide to scratch and some we leave as a unanswered want for now, for other reasons, for duty or obligation. We imagine and we cajole ourselves and none of us have a map. We are all looking or a horizon to trust in.

Winter solstice – waiting on a sign

waiting-for-a-signHave you been waiting for a sign about what is coming next? The solstice is around the corner and it is a great reminder that what you’re asking for is being answered. The earth has turned in a circle of the year and we spiral through the rhythms of our lives. Here in the south the sun is about to be reborn – it is a time of renewal. The sign you’re waiting for is already up and all you need to do now is see it.

Not as easy as it sounds

What we can get stuck in is a rut of things being literal. We expect the world to put up a billboard for us and to advertise directly in a way we can’t miss. After all we’re busy! We’ve got a lot of emails to read and stuff to do. It is not like we’re sitting around with time on our hands, no way, we’re multitasking our way to the end of every week trying to keep a dozen things on the go. As people say these days “Aint nobody got time for that!”.

But wait – there’s less

You have all the time there is – a lifetime – but how easy is it to get that confused with jobs and roles and the expectations of the world. House prices and debt repayments and whoa Christmas is on the way! It all rushes up and around us. Take a moment here. The sun comes up every day. Let it be your sign. Let the sun’s tides be a cue to do a little less, take a little time, wait a little longer. There’s a time later on for blazing away. Now is a time for looking around and taking in what is waiting for you.

Is there something you’re asking for? Look and listen now for the answers that are being suggested. This is it. Life is here now.

Road rage reflection

It can happen to anybody, maybe even you. Road rage. That ugly beast we can become on the road, and the zombie partner that forms it; if you slip into one, you’ll flip into the other. Let’s take a minute for some road rage reflection.

Chariot pile upImagine if, on a weekday morning, you came out of the house to start your daily commute and found this note on your windscreen.

“To the driver of this vehicle,
You have cut me off twice now, both times I don’t think you saw me at all, even though you came so close and put us both in danger. If you cannot recall the incidents with absolute clarity, then any excuse you think you have is invalid.
Driving is a privilege not a right. Please take this opportunity to refresh your knowledge of the road rules and your understanding of courtesy, and take care to apply them both.
Please don’t make it a third time.”

If that note would give you reason to pause and mentally scroll through memories and evaluate your possible guilt or culpability then you could be someone with an opportunity to change your habits and values when behind the wheel.

Perhaps your opportunity is instead in your habits dealing with shop staff, workers from a different team at your job, the staff who operate the public transport you use, the other people buying groceries at the store, fellow pedestrians, it goes on and on. We have so many interactions every day with so many different people who all have their own story in which they are the central character. For each of us, these are habitual interactions because we live in a world brimming over with people. We have become functions to each other, not fellows, not real people. Functions, meatbots.

Do you ever criticise people who seem continually clenched around their gadget screen or asleep at the wheel or pushing others out of the way in queues? I know I have. It doesn’t feel like enough to try breaking the cycle when those other people then take advantage of you for being nice. We’re all afraid of someone taking advantage of us. I wish I had a moment of enlightenment for every time I’ve been told to ‘toughen up’ or ‘get a thicker skin’.

Actually, when people tell me this I feel more hurt (even fundamentally neglected or undervalued). After all, why can’t other people just be nicer? Why am I the one who’s ‘wrong’? The same types of folk who have no compunction about telling others to ‘toughen up’ seem to never be willing to similarly command others to “be less of an arsehole”. Just sayin.

A wise teacher recently told me that every time I complain about others’ behaviours I am a in fact setting myself back significantly. “Oh great” I thought, “wrong again! Wrong for being too soft, wrong for wanting the world to be more pleasant and now wrong for complaining when others are rude or mean.” That little story I just told to myself there, that was the key to figuring out what he really meant by what he said.
Here are his words:

See if you can catch yourself complaining, in either speech or thought, about a situation you find yourself in, what other people do or say, your surroundings, your life situation, even the weather. To complain is always nonacceptance of what is. It invariably carries an unconscious negative charge. When you complain, you make yourself into a victim. When you speak out, you are in your power. So change the situation by taking action or by speaking out if necessary or possible; leave the situation or accept it. All else is madness.
Eckhart Tolle, The Power of Now: A Guide to Spiritual Enlightenment

I did not want to hear that.

I tried to argue with it. The very first way was by making up that little story above – exaggerating how I am always being made to be wrong – a little melodrama with me as the swooning star. I thought about it every way you can. For weeks. But that’s the trouble with hearing something true, once you know it your life truly changes. So it has been for me as I digest this insight. All else is indeed madness. Leave or accept. Act where you can.

In trying to come to terms with this, I stumbled over this little twist on an old favourite “the grass is always greener where you water it”, fresh enough for me to reflect on my own habits of envy, and to remember the “which wolf you feed” story) and these both made a bridge for me into the key idea that through habit I was allowing a self-identification as a victim in all kinds of realms of daily life. Perhaps that’s another part of road rage – there is a desire to take action against an unfairness or wrong action – and yet violent response outside of building and understanding context and consequence is feeding the wrong wolf, watering the weeds.

In a moment of rage we can be lost to our stories and triggered into moving far from our center. It can feel like blacking out, like being possessed. Inside that unconsciousness we are simply reacting, not making choices. If you feel that you’re in a rut in trying to get positive patterns started in your life then look for places in which you’re complaining about something rather than acting to generate the change that you want. Look with honesty in how you’re describing the story of your situation to yourself and ask if you’re truly supporting the person you want to be or simply enduring the habits you used to water. Imagine forgetting what useless, impotent rage feels like. I think that sounds wonderful, let’s try together.

Image credit.

Promise of puppies

promise of puppiesIt felt like a tough week for lots of people. How hard is it to pull yourself out of the downward spiral when friends are having tough times, your back is constant pain, the news is filled with violence and horror? What can you turn to? What keeps you going in dark days when depression sniffs around or when you don’t know how to take anymore of the *same* *shit* for even another day? Times like this words can’t reach past the gunk to help you reset, you know there’s still love and hope inside you, but you just can’t feel it. Take a tip from the pros to help yourself through and use the power that comes from the promise of puppies.

Kittens work too, or Shetland ponies, baby turtles, that video of a baby elephant dancing with a ribbon. Maybe even a penguin falling over. Whatever. You’re getting the vibe here – find that which for you summons the promise of new hope, true innocence, and unquestioning, uncomplicated, straightforward love and fun. For me, this is the promise of puppies – love and fun. You’re on your own with the toilet training.

Are you shaking your jaded head and tut-tutting?

Yeah, I hear you and the “oh grow-up” or “get serious” type comment, but hear me out. If you want to live deliberately, mindfully, according to your values, then you need some tools to help you reset and refocus when events have you grinding your teeth with frustration or anger. Our grown-up rational mind tries to think us out of the problem. Oh mighty giant brain! I don’t know about you, but for me that just goes around in blame circles, or shoulda-woulda regrets, or just one more thing that I have to remember to do or change or remind myself. Here’s the shortcut – looking at a picture (or listening to a piece of music) switches the side of your brain that’s in charge of processing stimuli and at the same time it gives you a nice feeling. The feeling is the key because all that worry and thinking has put tight, anxious feelings in you, feelings of ‘not enough’ and the power of puppies is that you are already enough. A world that can hold puppies is a world where a smile is still possible.

You’re not being heartless or immature to want to be able to smile in the midst of hardship. You’re giving yourself care and re-affirming the context and values that you have decided to embody. If a picture of a puppy or a kitten helps you stay on track then why would you deny yourself? Sheesh, consider making it a tattoo!

Puppies are for life

We all know that a commitment extends beyond the holiday, beyond the first rush of sweet hedonistic pleasure, so remember – the power of puppies extends well beyond playful Saturday afternoons. Sneak a glimpse at one first thing Monday morning, or any sleepless night. Let the love and life you see in them seep back into your weary mind and from there you can relight your candle with what you may like to think of as ‘higher-level activities’, but I don’t judge. Want life? Want to feel the bliss but you’re too far from it to even crack a smile? Build yourself a bridge and come back to home.  Come on back to that golden lake of joyful contentment that lives inside you because from there you’re living the life that you really want.

Freedom, bliss, joy, balance – they all start from your center. Want the power to return to that place whenever you want or need to? Use the promise of puppies to get you there. I do.

Share your sunrise smile

share your sunrise smileLast week talked about the bliss of being and how it is part of you wherever and whenever you are. Do you want a tip for how to connect with it? Like so many things in the world you have to give something up to get something else. This is radical, you’re going to love it, you need to share your sunrise smile. With strangers, whenever you can. Flagrantly, extravagantly, abundantly.

Feel the sunrise

Although sometimes you have a tough week the world doesn’t stop and wait while we pull ourselves back together but the mundane miracle is the each day really is a new day. Our habit is to carry the burden of yesterday forward into today and we open our eyes to the world already heavy with the weight of the past. Imagine that instead each morning your mind was clear like the sand washed smooth by the tide and you could smile radiantly with your whole being. Incandescent with joy, innocence, bliss. That is a sunrise smile, the expression that everyone who knows you and cares for you loves to see on your face. It is the smile that gives strangers a tingle and makes just about everyone smile in return. It is your expression it is your treasure and you must give it away every day.

The gift that keeps on giving

Of course it is also a magical smile in two important ways.
Firstly, like all smiles, it multiplies. The more you share, the more you get back. This is nearly always true. I work in a building with a lot of lawyers, they don’t seem to like people smiling during business hours. Tough crowd.
Secondly, and here’s the unexpected win, it makes you feel *amazing*. If you practice and reach into the place inside you where the sunrise lives, you’re shunting away the built-up grunge from yesterday and you’re not rushing forward into what might happen later, you’re holding a golden moment of utter “now-ness” right there in your heart and it just bursts right through to your face. Wow. Try it. It feels weird to begin with. Practice on your dog or a favourite tree.
It gets easier, and apart from the delight you get in having lots more people smiling at you more of the time, you’re also experiencing connection with your own bliss of being. Wins all round.
Share your sunrise smile as much as you can and live today from your bliss.

Ten years living with ulcerative colitis

Janine Prince March 2015This week marks ten years living with ulcerative colitis. Not an anniversary to celebrate. No. However a moment worth marking nonetheless and I’d like to bear witness to my experience. My intention is to do so as a recognition of all the other people who are living with a chronic illness or for those who might find these words when they are first diagnosed, and search (as I did at the time) for some hint that life goes on.
I haven’t learned enough in life yet, but I have learned that my burden is not the heaviest nor the only burden being carried. So many people suffer every day, and that’s the normal part of their day. Many of them are brave, they are courageous, generous, loving and all those things that people are and to me they seem to be saints because they do all of that without ever asking for pity or a special deal for their own personal situation.
I’ve never been like that. I grew up a self-centred, petulant and ego-driven individual who coasted through life enjoying good health and generally easy successes. If something didn’t go my way, I threw a tantrum. I was bad mannered and basically, if you’ll excuse the expression, a pain in the arse.

The fall

Like many people I was misdiagnosed in the early stages and also like many people, the arrival of this condition was extreme. I won’t bore you or try to shock you with the tedious and grotesque details, but if you are interested, by all means read about ulcerative colitis on Wikipedia and be warned, it isn’t pleasant and there are pictures. The first months were a traumatic roller-coaster of denial, endless specialist visits and a cocktail of anger, fatigue, loneliness and humiliation.
Anyone who has a chronic illness has probably had a similar experience in the broad sense. It is something that undermines your sense of identity, worth and optimism. I came to my knees and the landing was hard. Nothing was fair, and no amount of tantrums would change the physical facts. I kept fighting, and I kept not getting anywhere. Chronic illness does not have any obligation to get better or ease up or otherwise change itself just because your life is falling apart.

I can’t go on

For me, it got a bit worse psychologically even while my physical symptoms began to stabilise. Due to the large blood loss sustained on a daily basis, I had a lovey delicate pallor that was visually appealing. I didn’t have anything bandaged, or in a cast, or visible bruising – I looked pretty good. Inside I was in constant pain (no suggestion at that time from any specialist that I seek or simply be given some support for this, other than more drugs) and questioning if this might be a good time to make an informed decision to exist the great stage. Not only was I not confident that the daily regime of drugs would ever restore me to functional operation, but I felt that I had lost my place in the world. Who would ever want someone this broken?

I’ll go on

Thankfully, I didn’t have the energy or the requisite escape-velocity of self-loathing to finalise the exit at that time and urgent practical matters took my mind off the subject in the long, dark nights. If you’re in the first year or so of having been diagnosed with a chronic illness, please get support as soon as possible for managing your physical and emotional pain. Much as you may think it, you’re not currently in a position to make an “informed decision” about what to do with yourself. In hindsight, I can see it was my ego throwing a pretty big tantrum. A bluff I wouldn’t wish on anybody to call.
The sun rose in the east, arced through the sky and set again to the west. The tides of the moon and the wheel of the year swung around me while my bubble of self-protection and self-pity got cramped and ever lonelier. People have different experiences. I was slowly to learn that I was one of the lucky ones. For a long time I kept a list of illness I was grateful I didn’t have and it got longer as I began to listen to other people’s stories. The burdens I was unequal to carrying slowly lightened as I was able to return to work and also to listen with empathy to what others were carrying. It was still unfair, and so little in life was, that the bleakness never wavered. Days trudged by and the game became one of fighting boredom. I was still fighting, still not winning, still pushing people away as much as begging for closeness. It was a life, but it felt hollow. The fight had been to stop the illness from taking over, from changing things, from taking the freedom of choice away. Laugh if you like, it had done that from the moment it appeared, would I ever come to my senses and stop fighting something that had already won?

The serpent

The trouble was, chronic illness is so easy to see as an enemy. For years I thought of it as a great coiled serpent where my bowel should be. A serpent that in some nightmares ate me whole from the feet up. My powerful enemy could bring me to my knees at any time it cared to flex and coil, raise and strike. My feeble body was a warzone of drugs, fear and fatigue.

What if it is all ok?

Thankfully there are a lot of wise and giving people in the world, some of whom planted seeds of wisdom and compassion in my stony skull. I still had some long dark nights where I wondered if all this effort was for nothing, yet at the same time I slowly began to understand the incredible power of helping other people. I began to see a third way between the fantasies of freedom and total annihilation. The endless confrontations with nightmares opened my other eyes to the shadows I held within. Most importantly, I accepted that sometimes the pain was horrible and I stopped trying to anticipate that or wish it away. I held a rock and took it one breath at a time. I checked in every few breaths, maybe changed the rock to the other hand. Breathe. Right now. This is what is happening. Time helped the reality replace the fantasy. I could live in the cracks. Maybe I could bloom where I was planted too. What if I was ok enough?

It is what it is

There’s no snake now, no enemy, no answer either. I have a thing, like you might, or someone you know does. I manage it as best I can and sometimes I can’t. Sometimes I forget I have it, other times, well, I still have that rock to hold. My road in the last ten years has been hard work, and followed a river of tears. Along the way I’ve changed and (hopefully) grown. I wish you all the best on your journey, just remember, we’re all in this together.

Of course, your mileage may vary.