It wont be “me” who dies

Because I’m around death so much of the time my own death is never far from my thoughts. Maybe it is a little self-absorbed and possibly narcissistic but that isn’t my intention, I’m not thinking about how terrible it will be for the world when I am gone but rather I consider my death in its wider sense, in whether or not it is the end, about it being the driving force in much of what we do in life, I think about the philosophy of life and death and belief in an afterlife and I think about death in the “what’s it all about Alfie?” kind of way.

I am not the only person who thinks about death, not now and not ever, loads of us are at it, wandering round graveyards, listening to dark songs and looking at memento mori and doing Thanatology – yep there is indeed a science of studying all aspects of death which means it is not weird, it is an actual thing. There are aspects of the world that seek to prepare us for death or at the very least to reflect on it. Religion is perhaps the most obvious one but art in all its forms is a prompt too and so death is an aspect of much of the music I listen to and the art I look at and the poems and literature I read. I was looking at a copy of Gustav Klimt’s “death and life” , admiring the separation between death and life he depicts and I had recently read about how art work in medieval churches was designed to encourage or perhaps force people to reflect on their life and to prepare for death and what follows, thinking about that, looking at Klimt’s work and thinking about something I had heard the art historian and Nun Sister Wendy Beckett say about art and its role in preparing us for death, I had a head filled with death, death all the way. I wondered whether or not art depicting death could help to prepare me for my death and whilst thinking about that I realised, it won’t be me who dies. This me, here now, typing this isn’t the one who will die. This person here now can contemplate and reflect and mull it all over but this person cant rehearse for the death of the future me no matter how many Smith’s songs I listen to or paintings with skulls I look at.

My thinking about my own death now is a kind of game, like acting, I can think and write and perhaps cry but I’m still alive at the end of it and can have a cup of tea and a custard cream and think about something else after pondering death.

I cant really prepare for my death because I don’t truly know the woman who will die, it is not the me here now, I hope she will be many years older than me, I hope she will have more laughter lines around her eyes, I hope she will have been a happy wife and perhaps a grandmother and will have managed to give up eating dairy and will have built on the life this “now me” has had. I can think about how this “now me” would like to believe she would react if she were dying but its nonsense, this “now me” is playing at thinking about dying, not in a trivial way but in a way removed from full reality. “Now me” wont be there, “future me” will be. The essence of “now me” will be there, I may look similar, sound similar and act in similar ways but I wont be this me, thinking about my death now is no different than when I was a child and I used to think about what I would be like when I grew up. I didn’t succeed at guessing then, my predictions then were far removed from the reality and in thinking about my death and how I will deal with it I expect not to be able to guess now about what will happen then.

When the future me, the slowed down, older, more fleshy and wrinkled me is dying she will look back at this me and think how ridiculous to have pondered the unimaginable, to have thought about it and tried to plan and prepare and not be afraid and to face it. I expect she will understand why I thought about it and why I considered it and the role it played in my drive to comprehend myself and the world around me and the people I interact with and she will probably think kindly of me for having done this.

 

 

*Image of the Miles Moulson monument at Undercliffe Cemetery Bradford

Aubade

Philip Larkin

I work all day, and get half-drunk at night.
Waking at four to soundless dark, I stare.
In time the curtain-edges will grow light.
Till then I see what’s really always there:
Unresting death, a whole day nearer now,
Making all thought impossible but how
And where and when I shall myself die.
Arid interrogation: yet the dread
Of dying, and being dead,
Flashes afresh to hold and horrify.

The mind blanks at the glare. Not in remorse
—The good not done, the love not given, time
Torn off unused—nor wretchedly because
An only life can take so long to climb
Clear of its wrong beginnings, and may never;
But at the total emptiness for ever,
The sure extinction that we travel to
And shall be lost in always. Not to be here,
Not to be anywhere,
And soon; nothing more terrible, nothing more true.

This is a special way of being afraid
No trick dispels. Religion used to try,
That vast moth-eaten musical brocade
Created to pretend we never die,
And specious stuff that says No rational being
Can fear a thing it will not feel, not seeing
That this is what we fear—no sight, no sound,
No touch or taste or smell, nothing to think with,
Nothing to love or link with,
The anaesthetic from which none come round.

And so it stays just on the edge of vision,
A small unfocused blur, a standing chill
That slows each impulse down to indecision.
Most things may never happen: this one will,
And realisation of it rages out
In furnace-fear when we are caught without
People or drink. Courage is no good:
It means not scaring others. Being brave
Lets no one off the grave.
Death is no different whined at than withstood.

Slowly light strengthens, and the room takes shape.
It stands plain as a wardrobe, what we know,
Have always known, know that we can’t escape,
Yet can’t accept. One side will have to go.
Meanwhile telephones crouch, getting ready to ring
In locked-up offices, and all the uncaring
Intricate rented world begins to rouse.
The sky is white as clay, with no sun.
Work has to be done.
Postmen like doctors go from house to house.

No one can build the bridge on which you and only you must cross the river of life.

When Nietzsche said the thing about the bridge he was philosophising in the same vein as Sinatra when Sinatra sang “I did it my way” although Nietzsche said it first, and perhaps more eloquently but Sinatra had a better tune and he said it in Vegas, but I’m quibbling, the core message is the same: you have to find your way to live, to do life your way. There has to be a time when you start to make your decisions and your mistakes and you take responsibility for them equally. Only you know how to get your life right, how to do your journey the way you are supposed to and it cant be an extension of someone else’s life, it cant be their second life, their chance to have another bash at it by telling you what to do and yet, even when we know this and we sing the song and we say we are doing it our own way it is not possible to always consistently do it our way. We have to compromise, we have to consider others and we are policed and regulated by other people every day. Not just the laws and rules that govern but the social expectations, the views other people have of how we should be doing it, the way the current system(which many of us accept is making us ill) controls us socially and culturally and so we never truly have the freedom to build our own bridge, we’re dependent on other people for much of the planning permission and the materials.

When I talk with people who are dying there tend to be two camps, there are the people who take the approach of “I’ve lived and I’ve made mistakes and I didn’t always get it right but it’s done”, then there are the people who say “if I had my time again” or “If I’d known then what I know now”.

In both groups people talk about having “worried” what other people thought of them and this affected their decision making, how can it not when we are communal animals, we live amongst our own and have to adopt customs and rules which ensure we cooperate with the group, but there are rules and expectations and instructions from those around us which seem petty and conformist and controlling beyond the bigger picture of governing society. Rules about who we marry or what music we listen to or where we travel to or the job we do or the area we live in or what clothes we wear or whether or not we wear red lipstick. These are all things which people who are dying have told me they wish they had had the courage to break free from and make their own decisions on rather than taking the route of doing what was expected or insisted on by the people they cared about.

The tyranny of other people, the need for approval and the reflection of us in their eyes traps us in a way we don’t readily think of but was nailed by John Paul Satre in his 1944 play No Exit in which he opined “hell is other people”. We want to be liked, we want to be accepted and to find what in modern parlance we term our “tribe” but at the same time we wan to be ourselves and to live a life in which we feel free to be authentically us, whatever that is, sometimes its just to break out of the straightjacket of expectations and convention and to surprise ourselves and those who think they know us.

Years ago I worked in a service supporting people with dementia, in the day centre we had various groups and sessions, our work was based on the research of Tom Kitwood and his model of person centred care. One of the groups I supported in was a beauty group, it was simple stuff, basic hairdressing and manicures but it was enjoyable for the woman who attended. We had a selection of nail varnishes and some of them were nice, safe, run of the mill colours, pale pinks and corals, but randomly thrown in the mix was a bottle of sassy bright red, racing car red, a sexy vampish colour that had probably been donated by one of the staff. An elderly woman I worked with, who was what I thought of as very conventional in her navy blue slacks and cream fine knit sweater with short grey, permed hair came to the group one particular week and when I laid out the selection of nail varnishes like a pink colour chart she bypassed the safe colours and picked the red. Nails filed and painted she kept admiring them when she picked up her cup for a drink or when she held her cutlery at lunchtime or just occasionally in that way we do when weve had our nails done, just holding out a hand and checking it out and feeling a little bit pleased about it. Sad thing was, when it was time for home her middle aged daughter arrived to collect her, when she saw her mums nails she seemed shocked and angry, she took me to one side and said “please clean my mothers hands, shes not the kind of woman who wears red nail polish”.

I cleaned the nail varnish off and it was never mentioned again but the experience stayed with me all these years, whilst dementia is a cruel illness which takes away many of the aspects of who a person is it also liberates some people from the restrictions of who they are or who they are expected to be. There are all kinds of emotions and judgements tied up in a woman choosing a nail varnish she wouldn’t have usually worn and what this meant to her and what it meant to her daughter and what her daughter thought it might mean to the world. The small compromises we make for the sake of other people and for the way we want to be and be seen in the world still constitute choices, we are still selecting and rejecting so I’m left wondering are we still doing it our way even when we make a choice to do it someone else’s way?

 

Skip and a mallet

When my son was much younger than he is now I asked him what would happen to my belongings when I died, my son, who has always had a dry and very caustic sense of humour replied “it will involve a skip and a mallet”. My house was, is, filled with a mish-mash of charity shop finds, old unwanted and pre-loved ornaments, trinkets and pictures, these things were found in charity shops after they were evicted from family homes, they were unwanted and so in my mind they were unloved and I’m a sucker for a social outcast or reject.

There is a lot of clutter in my home, a lot of charity shop gems and a great number of books, I think I hoard books, we didn’t have many books when I was a child, my father had a leather bound set of Dennis Wheatley books he kept on glass shelves that we were not permitted to touch, other than that we were not a book owning family but we are a book reading family. I cannot bear to part with my books and in places in my home they are taking over, I’m not sure my collecting would meet the DSM standard for hoarding but its not healthy and I struggle to throw things away, I have a war-time, frugal mindset instilled by my grandma in which I try to avoid throwing anything away which might have a useful life. And so this means my home is full, it is full of things which matter only to me and the task of clearing it out when I die will fall to my son. I could grow very sentimental about this but in reality, I don’t want to face the task of clearing out my home so why would my son want to do it.

I have a sense that some of the things I own are imbued with power, or potency and so are “magical” in some way. I don’t want to throw some things away because I would miss them, other things I might “need”, some things I think it would be bad luck, bad karma to throw away. Some things I couldn’t bear to part with, photographs of people I love, cards from people who love me, knick-knacks with sentimental value, I don’t own anything of any material value. The things around me represent me, they represent my inner being, be it my soul or my mind, the kitsch, cluttered, eclectic, useless assembly of things tell visitors who I am but they also remind me who I am. In the same way the ancient Egyptians buried symbolic items with the Pharos or my Romani ancestors burned and destroyed the belongings of the deceased , we all understand the symbolism, the potency of the “things” we surround ourselves with, I am not unusual in equating “me” with my things, indeed this is part of all cultures in varying ways, the things we own define us but today this is the witchcraft of capitalism, our current system tells us that we are judged in accordance with what we own, owning the right things, be they the right new things and the right old or antique or vintage things.

The sense that some things have a potency beyond their financial value is evident in our collecting our children’s milk teeth or locks of hair or, in the case of my nan, keeping her gallstones in a jar after they were removed. My Nan kept the chunk of my hair that was cut off when I had my first “proper” hair cut at a hairdressers when I was 7years old, the pony tail was tied in an elastic band and stored in a drawer in one of her cupboards, it was still there when we cleared out her home some thirty years later following her death, I don’t think this was an item she would have remembered she had but at the same time I also don’t think she had forgotten she had it either. My Nan keeping my ponytail reminded me of the Victorian custom of memento mori, and particularly the taking of locks of hair from a deceased loved one to make mourning jewellery, a way in which to keep the person close, to remember death and loss and to signify ones grief and love to the world.

My maternal family are of Romani descent and one of the traditional customs after death which is not often enacted today is that all belongings which can be reduced to ash must be burned and all belongings which cant be burned must be smashed and broken, partly this is so the deceased can have their possessions in the next life but partly it is designed to prevent “marime” or contamination from whatever ailed the deceased. This is a complex custom and one which results in there being nothing to hand on from generation to generation, this lack of tangible inheritance may well be the reason for the longing deep within my psyche to seek out things without a home and cherish them creating my own version of a cabinet of curiosities, I have no inheritance from my family but I have created one for my son curated from the discarded belongings of other people and its small wonder he is less than excited about having to fit it all into his home after I am gone. The things I own will doubtless be returned to charity shops and will begin the cycle again but I like the idea of that, I’ve collected the things which stir my soul and appeal to my eye and my spirit, my mismatched collection of tat would not appeal in its entirety to anyone else and so it seems only right that its scattered and separated because it is uniquely mine and when I’m gone the purpose for which it was assembled will also be gone.

 

 

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.