Posts by death sponge

End of life worker and existentialist. I think about life and death regularly but this doesn't make for light hearted chat so blogging is the answer, the internet will tolerate me.

Anger is an energy

Today I’m distracted by repeated thoughts of a woman I worked with, when I move into thinking of her I well with emotion and I’m overcome, I have to stop thinking about her, but then my mind creeps stealthily back to her as if to test the water of my thoughts. There’s a tentative tread towards recalling her, towards allowing my mind to remember her, to picture her as she was when I visited the family home. She was the mother of a man who was dying, she was caring for him, he was only young and she has stayed in my thoughts long after my involvement with the family ended. I think of her whenever I work with carers who are deeply distressed by the suffering of their loved ones and I think about her when I encounter strong, fearless women, woman who have passed the stage of life where they care what the world thinks about them and so are free to be authentic and free to voice their rage and to process it in a way that works for them.

Distress is manifest in a variety of ways but for this woman it was expressed in honest, direct, visceral ways. Her rage was expressed in her physicality, the way she moved and gestured when she spoke, the way she grimaced and contorted her face as she retold incidents, the way she re-enacted conversations as she moved around the room pushing furniture out of the way or sitting at the dining table writhing and convulsing with her hands trembling in fists held just in front of her in a way that reminded me of someone experiencing a seizure, the way she cried and shouted in the course of every conversation I had with her. She was a terrifying presence when she was in this flow and I was in awe of her. She unsettled me, she left me feeling rattled, she filled the entire room and I found no reason to speak or to try to explore what was happening because she was a raging force of nature and she was centre stage and I was overwhelmed as her audience of one. She was incensed but her anger was purposeful, it wasn’t indiscriminate, her fury was about the situation, the disease and the injustice of it, she was angry about the economic system and its injustices, she was enraged about the inequities in funding and access to care and in her anger she was eloquent, hypnotic, persuasive and passionate and so I didn’t want to do anything other than allow it, to observe it and often to slip into it in order to fully experience it. When she was angry she was absolutely alive, the inner emotional fight she was experiencing every day watching her son die was manifest on the outside through her rage. She hid her rage from her son and so it needed an outlet. Her anger made people who witnessed it uncomfortable, it made people turn away and in some cases walk away. She wasn’t stoic, she wasn’t dignified or reserved she was f**king raging and why not, her son was dying, his life was barely underway and he hadn’t done many of the things we see as landmarks on the road of an adult life, how could she convey in words the anger and injustice she felt, it was impossible. Far better to show me, to make me see and feel it, to provide me with the experience of apprehension, uncertainty, dread, loss of security, of wanting to run away, of wanting it to stop, of wanting to be rescued of wanting it to change.

When I reflected on her anger after each visit I could process it in a logical way and relate it to research in death and dying, I could see the resonance with Elizabeth Kubler-Ross’ 5 stage model of grief, anger is in there as a stage but I never said this to her at the subsequent visits, I never spoke of it, how could I tell a mother who was grieving for the impending death of her son that there was a model which could provide comfort and reassurance about the fact that this is an understandable part of the grief process. I understood that some of her anger was projected onto issues outside of the illness but she was subject to the system and experienced first hand the inadequacies of it and the impact of this on her son and his situation and so I couldn’t disabuse her of this or deny the reality of hers and her sons experience.

Rather than try to comfort or sooth her I wanted to join her, it was contagious, I wanted to give vent to my rage about all manner of things, the injustice of her sons illness was on my list, her pain was on there too but I had a long list, a list of “things which make me angry”, some of them my own personal rages and some of them bigger societal rages. I never gave into it, I remained professional, I was her witness, I didn’t try to stop her raging, I didn’t hush her or offer solace because there was no place for these at that stage in her grief, I didn’t want to try to curb her anger because it was likely to be the thing that kept her going after her sons death, it was going to be her survival tool, she was going to be a campaigner and an activist in the world in memory of her son and in support of others so I had no desire to dissuade her from her anger, as Johnny Rotten said, “anger is an energy” and she was bouncing with it. At the end of each visit I would climb into my car and drive back to the office but on the journey I would ensure my music was loud and angry to give voice to my own rage because sometimes its important to have the anger.

 

The grief of leaving everyone and everything

In Felicity Warner’s The Soul Midwives Handbook she describes an exercise used by spiritual care trainer and author Christine Longaker which is designed to try to show how it feels to be in the position of leaving life behind, of being on the threshold of death and trying to make the psychological and emotional adjustment necessary. The exercise looks at the enormity of leaving everyone and everything. We have all experienced loss and can recall the emotions and thought processes which accompany a loss whether it be loss of things or people but the amplification of leaving everything and everyone is so intense that we seldom think about it for fear it will overwhelm us. Just saying the words “leaving everyone and everything” has an intensity to it, when I say it the words slow down, theres an emphasis on the final syllable and I feel something in me, some part of me recoils when I say it, its not just a thought, its a feeling and its a feeling I don’t like. In saying it my mind flits across names of people I love and the things Im surrounded by here in this room and I can only go so far into the thought and I retreat again, it feels a little like falling, like the image of Lewis Carroll’s Alice falling down the rabbit hole with cupboards and tables floating past on the way down only Im falling past the faces of people I care about and the kitsch clutter I’ve surrounded myself with and freeze-frame style shots of scenes from my life, I want to grab onto something to stop the fall because I suspect at the end theres just nothing…just nothing at all but I cant picture “just nothing”, I can’t picture the absence of everything.

I worked with a woman several years ago who fought against her death, she raged against it and her sense of injustice about her impending death was contagious, I would find myself being outraged about the unfairness of a world in which a mother, still relatively young could die. I was angry and appalled on her behalf but I didn’t know who to direct my anger at, I just had a sense of it not being “fair”, of it not being “right”. She didn’t want to leave everyone and everything, to leave hope, to leave the future, to leave the sounds and smells and taste and touch of things and of people but there was no way to convey the enormity of that, sometimes it can only be conveyed by sounds, by screams and by moans which aren’t recognisably human but at the same time the audience recognises the depth of the anguish transmitted.

Leonardo da Vinci said “While I thought I was learning how to live I have been learning how to die“, we are all moving towards death everyday, we forget that, we push it out of our minds, we are all learning how to die without most of us actually acknowledging it and our lamentations will not hold death back.

 

We are all trapped by a singular fate.

Alone with Everybody 

Charles Bukowski

The flesh covers the bone
and they put a mind
in there and
sometimes a soul,
and the women break
vases against the walls
and the men drink too
much
and nobody finds the
one
but keep
looking
crawling in and out
of beds.
flesh covers
the bone and the
flesh searches
for more than
flesh.

there’s no chance
at all:
we are all trapped
by a singular
fate.

nobody ever finds
the one.

the city dumps fill
the junkyards fill
the madhouses fill
the hospitals fill
the graveyards fill

nothing else
fills.

 

Who does this work?

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Every day I’m involved with people who are receiving end of life care, some of them talk about the issues they are facing and some don’t. I’ve always thought it crucial that in order to be receptive to other people talking about their “stuff” I have an understanding of my stuff and how I got to where I am. I don’t force the deep, existential discussion on people but I don’t shy away from it when it comes up and I don’t change the subject to something safe and socially acceptable like the weather or Brexit.

The Canadian psychologist Jordan Peterson, in talking about people who work in EOL care, asked the question, “what is it about these people that they can do this work?”

I don’t think there’s anything special about me in wanting to work with people who are dying, there are lots of fields of work I couldn’t work in and would at best shy away from and at worst run a mile from. My route into this work has not been direct and deliberate and whilst I’ve worked in social care for the majority of my working life I only “discovered” palliative care a few years ago during my work in a residential service. Throughout my career I’ve veered towards working with the groups of people who are marginalised or whose situations challenge people leaving them feeling uncomfortable, currently, in our society, the dying tend to fall into this group and there is something about the outsider or perhaps our social pariah’s that draws me in.

It would be hard to fully articulate how I feel about working with people who are dying but I have a sense of my being driven by compassion, and a sense of unity with people, a sense of the commonality of the experience of death, its one we will all go through but many of us live in a state of denial or avoidance about our own impending deaths.

In some ways I’m a spiritual person have a spiritual belief but not one which adheres to an organised religious structure. My spiritual beliefs often provide reassurance when I am faced with challenges and serve to underpin some of my day to day living, these beliefs interact with my political views about equality and social justice and drive my day to day interactions in my work but Im not a moral crusader, nor am I from the “smells and bells” school of spirituality, not that I think theres anything wrong with that but its not my bag. I think Im fairly average and run of the mill.

Some of my beliefs about life and death have been shaped by my having read Buddhist and Hindu texts and read texts on wider spirituality as part of my own journey in trying to answer the big questions of “why am I here?” or “what’s it all about?”. I can try to process this belief through “thinking” but this belief system resonates with me somewhere else within my being, it’s not a thing I can fully articulate, it is a thing I “know” in a deeper and more core aspect of who I am. This might be the part of me described as my soul, it’s the part my friend calls my “knower”.

When I am reduced to my most basic “being” I am energy and I believe I came from and will return to energy. There is no reward and punishment system and no afterlife in the sense of that described by more mainstream religions and so I approach my work and the people I encounter from this position. I don’t want to say this is my calling because that word has too many connotations which don’t resonate with me, I just feel right about this work and I go about it mostly in a quiet way.

Like everyone I have experienced loss and grief. My dad died when I was 14 years old, his death was sudden and accidental and not what would be described as a “good death”. My dad was young when he died and within weeks of his death my grandfather died. The two men who dominated our world were gone within in a short period of time. There seemed to be a sense of acceptance about my grandfathers death, he was in his 70s and died peacefully in his sleep one new years eve and my mother was devastated. My grandmother wore black for a year to externalise her mourning but my father was never spoken of. In hindsight I understand that they weren’t equipped to deal with both deaths and so poured their grief into the loss which was palatable to the rest of the world. The death of a 35 year old man with four young children makes people uncomfortable, the death of a 75 year old man reflects the order of things and people are comfortable with it. There are no implored “whys” about my grandfathers death. There was no fear or confusion about his death, my grandfather had a “good death”, my father didn’t.

My experiences of death, loss and grief have undoubtedly shaped my perspective and my work. My experiences of not talking about death and not fully grieving have possibly created in me a desire to be open about death and about the emotional experiences of the process of life but I don’t have a sense of trying to redress the imbalance or fix myself through my work. Daily in my work I talk about death and I am mindful of the fact that this isn’t readily transferrable to my personal life, many of those around me don’t want to talk about death whether mine, their own or in general and so I try to be sensitive to the feelings of others. I still grieve when people I’m working with die, some cases touch me deeply and I still experience shock and distress at the news of some deaths despite the fact that they were fully expected. I don’t claim to be any better equipped to deal with deaths in my personal life as a result of my work and I don’t have a “how to” guide on dealing with dying and death but I am happy to hear you talk about it without shifting the subject to the weather or the football.

Death and Dying in the North of England

 

No one here gets out alive – Jim Morrison

 

I am employed in end of life work in the North of England and this blog is an outlet for my reflections on my experiences and encounters with people who are in the final months, weeks and days of life. I certainly don’t claim to be an expert in end of life work and every day I learn something new from people I work with so I am not aiming to teach anyone anything about death and dying but I do understand that the subject of death is still off limits for day to day discussion for most people and I’ve seen from my work that this isn’t always beneficial, not only for the person who is dying but for the friends and family who remain.

I’m not on a crusade to harangue people into talking about death but I do believe we ought to have the freedom to discuss these issues should we chose to do so. So much of our experience of life is spent denying or running from death, whilst there is no benefit to repeatedly focusing on the morbid aspects of our existence there is benefit to remembering that we will all die eventually.

I can only talk about death and dying in the North of England because that’s where I live and work, the North of England is a beautiful and inspiring place to be and my work brings me into contact with some wonderful people but I also work with people who are living in terrible circumstances whether due to financial poverty or social, emotional and psychological poverty, in the course of a week I often experience the best and worst of human relationships. I don’t have any answers or “how to” lists, I just have a very genuine commitment to supporting people at the end of life and supporting people who might want to ponder life and death…I’m generally banned from talking about this stuff in polite company because it can be a bit of a buzz crusher on a night out and so this blog is the electronic equivalent of therapy.