Death as life’s companion

We’ve just had our annual local death festival Pushing Up Daisies. A festival intended to encourage us to have more conversations about death, dying, bereavement, loss and grief and build a local community where we support each other as citizens and rely less on different professions to deal with death and dying for us.

I love that I live in place that has a festival like this.

When I was a toddler – probably 3 or 4 years old – I had an intense dream that has stayed with me and from which I have drawn different meanings at different times in my life.

I am walking in a small town with my mum. It is dusk, nearly dark and there is no one else around. I begin to hear the deep sounding beat of a drum. It is far away. Distant. A monotonous slow and steady beat that I can feel in my bones. And I feel scared. Something is coming. The beat comes closer too quickly and suddenly it’s upon us. A procession of skeletons – only I don’t know what they are, I’ve never seen skeletons. Walking dead, searching the streets, searching for us. And I know instinctively that we have to get away. So I get my mum to run with me, through the streets, along a railway track, away from the sound of the drums. But I can feel them chasing us now. Without rushing they are following us as if they know we have no where to go, no where to hide. My mum and I run to a mountain and we find some secret caves near the top. We can see the skeletons approaching. Slowly. Gracefully. We withdraw deeper into the mountain. And as my mum holds me I can hear the sound of the drumming surrounding the mountain and there is nothing but the beat.

I still remember waking up terrified. Not for myself but scared that the skeletons were coming for my mum. I remember struggling to explain what I had dreamt. How significant it felt. And I remember how the dream stayed with me as a young child. Vivid and important.

When I was 7 my mum and I went cycling around Denmark for a week or 10 days. It was an amazing experience. We slept in a tent together and we visited all kinds of places. On a bright hot day we went to a monestry. A beautiful old place that had partly been turned into a museum. In the graveyard they had opened some of the graves and covered them with glass so you could look down into them. I wasn’t tall enough to look over the edge so my mum asked me if I wanted to see. I didn’t quite understand what it was that was in the graves but I was curious. She lifted me up and I was looking down at a skeleton.

I completely freaked, twisted myself out of my mum’s grip and ran off out of the monestry and out to the road. In a brief moment I had felt the skeleton looking at me and all my terror from the dream returned. We were in danger. I remember marching along the side of the road in the sun and the dust. Furious. How could my mum take me to a place with skeletons? Didn’t she know how much they terrified me? Did she not know about my dream? Did she not know me inside out – all my thoughts and feelings?

I don’t know if I managed to explain to my mum what had happened. But I remember the painful realisation that my mum and I were separate beings. That she didn’t know my thoughts and feelings and that there were things about me that she wasn’t aware of. A different kind of loneliness entered my life.

A couple of years later death became my companion. I started considering taking my own life. At first I didn’t quite understand why and I quickly became full of shame and guilt. So much self-judgement for this longing I felt deep inside me. Longing to die. I can look back and totally understand why this young me would feel like dying but back then I just thought there was something wrong with me, that I was selfish and weak for thinking about taking my own life.

During Pushing Up Daisies I did a workshop named ‘How can I live when I feel like dying?’. I did a 30 minute talk where I reflected on things that helped me stay alive during the years where my death-longing was with me most of the time.

My teenage years and early 20’ies were spent just surviving myself. Everything I did was aimed at keeping me alive. Trying to focus on things that brought meaning to me in the here and now. Which was mainly creative activities and self-expression like dance, singing and painting. Around 22 I reached a point where I’d had enough. I kept thinking ‘what kind of life is this, constantly focusing on surviving myself and waiting for things to change?’ I didn’t feel alive and I didn’t want to live if I couldn’t find a way to get beyond surviving. So I tried the one thing I hadn’t tried already; I asked for help.

I quickly found out that telling people I thought of taking my own life wasn’t the way to get help. Not for me anyway. When I went to mental health services asking for help with my suicidal thoughts and feelings they just didn’t take me very seriously. I didn’t come across as someone who needed help urgently. However when I mentioned that I had experiences of hearing voices things started happening. Some useful stuff and some less useful stuff and I went on a journey of learning to navigate services wisely and safely.

I still have a relationship with death. It’s an important relationship. Thinking about death and dying has probably been one of the things that I’ve found most useful. Just diving in there and allowing myself to consider death, really feel my longing to die and ask myself questions. Why do I want to die? What do I hope will happen? What will I do if it doesn’t? What can I do once I am dead? What will happen to my mum if I take my own life? What will other people do and think and feel if I take my own life? Do I want to be missed or forgotten? Do I want people to feel guilty for not taking more care with me while I was alive? Do I want to punish the world by leaving it? Do I want to punish myself? What is a good reason for dying? What if I die and then return to live this life again? What will dying feel like? What will it be like to drown or hang or jump off a bridge? What will it be like to take an empty syringe and inject air into my veins? What will I feel? What will I think? What if I regret when there is no way back? What if dying doesn’t bring me peace?

And thinking deeply about death has changed how I relate to life. It has made me focus on meaning above anything else. I do not want to waste my time chasing achievements or goals that do not bring me meaning in the here and now. I prioritise looking after myself because I know that it is the only way I can be of use to my friends and contribute to the communities I am part of. Relationships are the single most important thing to me but I can’t be present in my contact with others if I am overwhelmed and anxious.

Another thing about death that I really value is the certainty of it.

Everything in life feels unpredictable to me and I experience a lot of unsafety and overwhelm. I myself am very unpredictable. My mood is incredibly changeable and my energy levels fluctuate so much that I can make a plan for the next couple of hours only to find that an hour later I am so exhausted I have to do things differently. I never know when I might have brain fog or a migraine and be unable to do much but sit around and wait for things to get better.

But death – death is so wonderfully certain. It’s the only thing I know for sure will happen.

And when I feel powerless, knowing that it is ultimately my choice whether I live or die gives me the sense of power and control that I need. Firmly believing that I am in my right to take my own life if circumstances become unbearable, has given me the strength to keep going. So in some weird roundabout ways – even though I don’t wish it on anyone else to feel like I have felt at times – allowing myself to feel suicidal and get close to death has helped keep me alive.

Along with endlessly repeating clichés to myself such as:

If you’re going through hell keep going.

This too shall pass.

If you fall and have to crawl make it part of your choreography.

You know what you have but you don’t know what you’re gonna get.

I still live through phases of feeling like dying. While I am in a committed relationship I have decided to step away from the option of taking my own life. I had a long conversation with death about it and death accepted that we have a less intense relationship. But I am also acutely aware that I don’t know what life will throw at me and at anytime everything can change.

When I die one day it may or may not be by my own hand. I am okay with that. I don’t judge myself for feeling like dying anymore. I am not scared of dying – I rather look forward to it and that feels liberating. You live life differently when you are not trying to outrun the skeletons and the grim reaper.

In the Pushing Up Daisies week you can volunteer to be a Daisy. You can be someone who wears a Daisy badge which means you can be approached and are up for talking about stuff related to death and dying. My mum’s name is Daisy but she doesn’t like her name much. I however like that I can be a Daisy – it feels like coming full circle. Being in a town where daisying is a thing you do.

I vow to daisy for the rest of my life because I believe we need to talk about death – as well as pain, illness, vulnerability, fear and all sorts of other uncomfortable things which are usually linked to death and dying in one way or another. Death shapes our lives whether we admit it or not.

Life would not be life without death so why not face it, feel it, think about it and celebrate it?

A tsunami of acknowledgement to everyone who made Pushing Up Daisies happen for the fourth time.

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Pushing up Daisies festival 2018

Our local death festival is fast approaching. For a week there will be all kinds of events exploring all kinds of aspects of death and dying. There will be workshops, talks, films, creative stuff and performances.

All events are free but donations are welcome. The money goes towards necessities like printing programs, tea and coffee and biscuits. Some events you have to book because there are limited places.

Everybody is volunteering their time and energy. At the heart of the festival is the the hope that together we can build more compassion communities.

 

 

The full programme can be found on Pushing up Daisies website

There will be some events looking at suicide

I will be talking about my personal experiences of trying to find ways to live while longing to die. And I am hoping there might be interest in setting up a local peer support group for people who live with suicidal thoughts and feelings.
Peer support for people who think about and long to die is still a hot potato – too much risk assessment involved and a suspicious stance towards those of us who feel like dying… ‘wouldnt a support group just encourage them?…’ But it’s slowly changing with the public realisation that it’s not just a few people who feel so overwhelmed by life that they want to die but actually so common that it must approaching the threshold of being considered ‘normal’. And services and organisation don’t have the resources to offer support to that many people so we to need to start thinking about how we create support in our communities.
I am inspired by my experiences of the support that can happen in hearing voices groups and also by the Alternatives to suicide group in Western Massachusetts that I have been lucky enough to visit.

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And there will be loads of other exciting and amazing stuff – like these ones.

 

 

To get a better feel of what the festival is like you can revisit the 2017 festival in the video below.

https://youtu.be/r1jF4EmguaY

 

Migraines

Post migraine exhaustion…
Been trying to finish this tiny portion of apple-cinnamon-porridge for the past hour or more… Some migraines leave my body in a right state and it takes a couple of days to recover. I feel hungry but too nauseous to eat. I know that eating is the only way to stabilise my body so I keep trying.

I get different kinds of headaches. Having had headaches since childhood Ive learned to distinguish the different types and sometimes that helps me look after them better.

I also get different kinds of migraines. I get hormone related ones which are pretty awful but usually I can do some stuff. They feel like my liver has decided to stop working and my body is full of toxins and the migraine is a kind of rebooting of my body.
Then I get migraines from eating stuff I shouldn’t have though it’s not always easy to predict if I’ll get one or not… They feel like my stomach is shouting at the rest of my body and my gut stops working so everything else stops working too. It literally feels like the pain in my head has travelled from my stomach up along my spine and into my head. These ones often pass if I manage to get some salt and sugar and stabilising foods like butternut squash, potatoes and sweet potatoes. (That kind of food can also help with the hormonal migraines I find)
Then there are tension migraines that usually start as a headache and develop into a really bad headache with migraine like features.
And finally there are the m*****f***** evil migraines. The superior migraine of migraines. The ones where there is nothing I can do. Nothing brings relief. And I just have to wait and wait and wait. Time stops existing because there is only this moment of pain and then the next one. And the next one… And I whine and I moan because I don’t know what to do. But that doesn’t change anything and it’s too loud anyway so I stop. And even though I’m in a dark quiet room, everything is too much. My own breathing is too much. The sensations of my body is too much. Movements make me throw up. The throwing up is not like normal throwing up. It’s like my body goes into spasms and I can barely breathe. My body will keep trying to throw up long after it’s emptied itself. These migraines seems to be like a trauma response. If I’ve been doing too much and gotten too intensely overstimulated. It’s my body’s way of stopping me and screaming at me. At times it can feel like my body is incredible furious with me and that there is nothing it can do but go into migraine mode.

With some of the other migraines it’s a relief once they start receiding. But with this one the pain goes away ever so slowly and I continue to feel weak and nauseated. I also feel like it could get worse again if I do too much so recovering is a slow and careful process.

So I have to be patient and I try to accept that I have to slow down for a couple of days. Not easy, though. Things I need to do. Things I want to do.

In the aftermath of a migraine I try to appreciate the migraine as a teacher. It tells me about my limits (however annoying it is to become aware of limitations) and it teaches me patience. It also helps me refocus and think about what my priorities are – what is most important for me, here and now. It also teaches me to have a very nuanced perspective on pain and appreciate times when I am in less pain.

Transitions

After two weeks on the road and working intensely in Ireland, I am now back home.

I am fortunate that I love where I live and I love my home life with my partner. I feel like I have been away from home for too long. Despite my relief and gratitude I also notice feelings of anxiety and restlessness.

Very unlike me, I got up quite quickly this morning after waking up and got a lift with my partner into the little town we live nearby. I had a meeting later in the morning and thought I might as well go to a cafe and wait.

I am finding myself still in the cafe – nearly 5 hours later. Been catching up on work, responding to emails and getting an overview of November. But I am also idling… Not really wanting to go home.

I think I am surfing the wave of energy that I have created while I was away. For me to cope with working intensely it is necessary for me to create these waves. And its exciting while it lasts – I get a lot done. But I cannot maintain such high levels of energy.

Sitting here, feeling my restlessness and noticing my reluctance to go home, I realise I am struggling with the transition. I don’t want to get off the wave.

I know I am overstimulated from all the experiences and inputs I had while in Ireland. I also know I am anxious about the coming month. And because of the busyness of the past 2-3 months – and the awareness of the busyness of November – I get a slightly constricted sensation in my body. A feeling of not being able to breathe or think – like I can’t hold the things  that I need to prepare for in my head. As if these things are just out of reach within my mind and a fear of forgetting something important starts creeping in. I find myself beginning to make lists to help me remember. I go over my diaries and plans repeatedly. I feel my ability to focus is slipping away.

Surfing a wave of energy – even when manufactured by myself – creates a sense of focus. I take one thing at a time and accept that I cannot prepare for the next thing until the present work is over. I find myself determined and capable in ways that are slightly unfamiliar. I was – amongst other things – able to deliver a 2 day workshop with my partner despite being ill with the flu. And in the 2 days off I had scheduled in for myself between work, I ended up being out and about rather than resting. While I realise some people might call this ‘flow’ to me it feels like a somewhat compartmentalised state of being.

Coming home I can feel how this compartmentalisation is crumbling. Daily life with daily chores, concerns and responsibilities, daily life dynamics with my partner and daily life dynamics within myself – it all makes me aware of the parts of me I have had to push to the side to ride this wave.

There is grief in transitions, I find. And frustration of having to let go of a certain state of mind. Learning to be aware of transitions and honour them has been important to me, but to do that I have to slow down.

I am apprehensive about the next couple of days. Will I crash? Will I feel caught in limbo unable to crash because we are going away again 3 times in November? What will this crash look like (physical illness, low mood, exhaustion or something else) and how will I manage it? What if I don’t crash – what will I do?

Earlier in the year I had plans to take 3 months out – a sabbatical. To clear my head, step back from my life and try to create space to rethink how I do things and see if I need to refocus. I had hoped it would be November, December and January. But work related things have come up that feel too important to pass it up. And then I planned a trip to Denmark and suddenly November and December feel full. Of good things but too full for me to properly take that step back.

I wonder if I will find the determination to make my sabbatical happen. I will have to commit to saying no. Maybe part of me feel anxious about stepping back from work. Like now – the fear of missing out when I don’t stay on the wave. But just in a bigger way – 3 months seem like a long time…

I want to learn…

I want to learn to gently and lovingly challenge other people to think deeper and become more aware of the consequences of words and actions…
The problem is that I absolutely hate confrontation. And I know that once I say something challenging, no matter how mindfully I phrase it, I cannot control how my words are perceived or what the response is going to be. And then I am in the s*** because I will get so overwhelmed by the sense of misunderstandings and looming arguments. The intensity of expressed emotions terrifies me and has a very real physical impact on me. 
What I am beginning to realise is that it is painful to become more aware. So it is only natural that there will be resentment and anger. I have days where I wish that I could be less aware and I imagine that life would be simpler and I wouldn’t get so bloody overwhelmed. And then I think “who am I to want to impose more awareness on other people?”
But I want to feel able speak up when I am not being treated as an equal just because I am a woman.
I want to feel able to speak up when I hear and see others being treated as less worthy and less important.
I want to feel able to take a stand against the repeated humiliation of fellow human beings that goes on everywhere covered up as ‘freedom of speech’ and ‘humour’. For me it is never, ever okay to humiliate someone else – I believe that imposing feelings of shame on someone can have deep effects that can last a lifetime.
I have a deep longing for equal relating and equal interacting – not just for myself but all around me.
I want to learn to facilitate spaces where this can happen – where we move together from always (often subconsciously) trying to establish a hierarchy and who is more powerful and more important, to sharing power and responsibility with each other. 
I deeply dislike it when my neighbours shout at their kids. It hurts me physically. I can rationalise ‘live and let live’ and that the kids are used to it – it’s nothing to worry about. I can think compassionately about their situation. It doesn’t change how it affects me.  
Verbal violence – even when it is not aimed at me – affects me. For hours, sometimes days.
Interactions based on assuming inferiority or superiority in someone else confuses me.
When I notice people are responding to each other based on misunderstandings and getting more and more entangled in hurt and self-protection, I feel sad.
I have to learn to choose my battles – it’s a cliche, but I really, really do. Because battling does not come easy to me and it has a deep impact on me physically as well as emotionally.
I wish I could learn to challenge others to become more aware without stirring up battles. But I am not sure that it is possible…

The ability to wait

There isn’t much fun about waiting… Though some people say that half the experience is anticipating it and preparing for it. I guess what I am talking about is the aimless waiting, waiting for something to change or shift or waiting for things outside of your control to come together. Some people talk about precious time being wasted when we wait – like waiting for the bus or for the washing machine to finish so you can take out the clothes in order to get on with the day.

I think the virtue of waiting is underestimated. There are some valuable skills in waiting. When you wait you have to surrender your idea of having control over things, you have to be with your restlessness and boredom and face your powerlessness. And I am not sure we do these things enough.

There seem to be a lot of energy in society spent on proving one is in control – that one is productive and efficient – and surrounding oneself with an air of busyness. Waiting and busyness don’t go well together. I think a lot of us feel urged to distract ourselves instead of waiting. Or we feel like we have to fill the time with something useful.

I think we tend to associate waiting with being idle. And being idle has got a bad name:

 

No wonder our adult parts – the conscientious, image-oriented and anxious selves – feel uncomfortable when we have to spend time doing nothing.

I also think many of us associate waiting with being told off as a child for being too eager, too excited and too demanding. Waiting was a punishment or a frustrating thing we had to do to get what we wanted.  How many of us has experienced an adult telling us to do this annoying waiting-thing and then sit down with us to figure out how to do it and what it’s like.

No wonder our inner children – the excited, impulsive and eager parts of us – feel like waiting is boring and an awful state of lonely restlessness.

So if waiting is more than being idle or being forced to delay gratification, what is it then?

As I get older people feed back to me how they appreciate my ability to wait, my patience. I wait for a mood to pass, I wait for the energy to shift in a difficult situation, I wait for the next wave of conversation to come (rather than create it), I wait for life to get less busy so friends and I can find time for each other, I wait for time to heal the cracks in suffering relationships, I wait for opportunities to come along. I have practised a lot of waiting in my life. Doesn’t mean I can always do it but I find that its a useful skill to have.

Waiting is not a passive state. Waiting, for me, is an attentive state; a caring, listening state. Listening in to my body, listening in to life, listening in to a situation. And trusting. Trusting that things change even if I don’t actively interfere. Even if I don’t ‘do’.

Because life is bigger than me and there is so much I do not know, so much I do not understand. I am seldom capable of confidently taking action because it is impossible for me to know what the ‘right thing’ or most appropriate thing to do, is. So I wait. And in my experience inevitably the thing to do comes to me. Like in some strange dance with life, the next step appears on the ground under me. And because I was attentively waiting I noticed it. Sometimes it’s other people who brings the steps, sometimes its something I read or ideas that come into my head. Sometime stuff just happens and I dance along. Then it slows down. And I wait again.

When I was younger I found this dance difficult. I judged myself harshly when I went through times of waiting. I shamed myself calling me names like avoidant, lazy, indecisive, unambitious and lacking drive. I felt like I wasn’t doing enough, not contributing, not out there enough changing the world, fighting the good fight.

But getting older I realise it just didn’t ring true to me deep down. I don’t want to be super-poductive and ‘out there’ because I don’t feel that rushing towards the good life and fighting for change actually creates the world I want to be in.

I am still waiting for the words to describe the world I want to be in and how I imagine the journey there…

 

Compassionate approaches to Mental Health: Building Compassionate Communities – a two day event March 30 & 31

I look forward to contributing to and participating in this event.

I usually feel wary about conferences because they can be a draining experience for me; too many unfamiliar people, too much information and not enough time or space to have meaningful conversations or to process what I am experiencing. But I also think they are an important way to share ideas and passions. Conferences can offer us opportunities to connect with people with similar interests, we can find support and inspiration and new projects and journeys can emerge.

Rufus and I contributed to the Compassionate Approaches to Mental Health event in November and I went away feeling quite encouraged – both about the possibilities of working together with others to change the culture around Mental Health, but also about changing how we do conferences. For me it all ties together… If we want more equal, inclusive and supportive communities where diversity is seen as an asset, then we need to keep an eye on the spaces we create or participate in. Whether it be our workplace, the daily bus journey, conferences or a learning/school environment.

The wolf we feed will get stronger…

I am a big believer in the usefulness of awareness, constructive critical thinking and being responsible. But I also know that there needs to be a balance – I have had to work on not feeling responsible for more than I can realistically deal with. I keep finding that the serenity prayer is a helpful reminder – it helps me stop, consider, connect with myself and give myself time to figure out what I need to let go of (at the moment – we can always come back to something if we need to) and where my energy will be best spent.

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More about the event from compassionatementalhealth.co.uk

Compassionate Approaches to Mental Health is a two day experiential event designed to inform, inspire and empower people living and working with mental distress.

We’ve gathered influential speakers who are passionate about changing the script around mental health, challenging stigma and raising expectations.

Our aim is to bring together people and families with personal experience of mental health issues, frontline staff, commissioners, managers, clinicians, policymakers and Third Sector staff, to discuss what works for people recovering from a mental health crisis. We’ll discuss a range of approaches that move beyond a medical model, with a special focus on Open Dialogue, mindfulness and therapeutic communities.

Building on positive feedback from our event in November 2016, we’ll go deeper into the issues we explored to ask how can we build compassionate communities in our mental health services and our own lives.  And how can a mental health crisis become a meaningful turning point and catalyst for change.

Read more HERE

Register HERE