We live forever in sunset
Learning how to care from the midst of suffering
A brief thought on content notes
I cannot predict exactly what connections you may make with my writing, or what may stir a specific memory or be triggering. But in case it is helpful: this post touches on chronic illness, the pandemic, the general state of affairs of capitalism and exploitation and much more. It’s also about hope & building new ways of being, which for some I find can evoke even stronger feelings than talking about the problems.
These are general guideposts, but even if we are walking side by side, you’ll see the surroundings differently, you’ll recognise plants I can’t even name, you may have an allergic reaction to something that I happily cradle in my hands. I trust that you have the agency to veer off the path, to stop reading should you need to. Return should you want to. And I have the responsibility to listen to your experience and perhaps adjust my route in the future.
I’d also like to note that today I write about my health in order to share learnings. Whilst I appreciate shows of support, I don’t require medical advice. What I would like most is to learn together, so please do share your thoughts.
By the way, if you’re interested in why I didn’t include a voiceover, please see this note.
We live forever in sunset
“Do you remember when we thought the world was ending?
Seems funny now
The future is a text message sending:
‘Ouch, ouch, ouch’
I live forever in sunset
An ending not quite done yet
Some people don't understand that” - Ezra Furman
In the past few years, with the pandemic and general political-personal chaos I’ve heard a lot of ‘the world is ending’/ ‘this is the end of the world’ type sentiments. It seems to have been a common feeling, as charted by R.E.M’s 1987 song ‘It’s the End of The World As We Know It’ re-entering the charts in March 2020.
Two years later, Ezra Furman released her song Forever in Sunset. It too speaks to that end of the world feeling. Whilst many people the pandemic was their first direct major experience of crisis, she sings for others who had already experienced multiple and prolonged emergencies. In an interview, Ezra argues proclaiming that the world is ending is a way of prematurely giving up responsibility. She says “It actually seems proclaiming the apocalypse is, in a way, giving up the boring and unsatisfying work of taking care of each and keeping things running. The idea of ‘forever in sunset’ is to hold both: that the world is ending, and that it’s not going to end.”
The song honours the way in which people who are often at the sharp end of crisis and disaster capitalism have worked to built up networks of care in order to survive. Ezra sings particularly about a queer friend who really knows what it is to navigate this ‘end-of-the-world’ feeling, a friend who has created new care-full worlds within the imperfect present world.
Since first listening to Ezra’s song, I’ve been dwelling on what it means to do care work (in its broadest sense) in a world that is at once perpetually changing and sickeningly repetitive. On a personal level, this is what chronic illness is like. Initially my ongoing symptoms and their knock on effect on my life, made it feel like my world was ending, but eventually the pain folded into my normality and my world, though changed, went on. In a sense, I live ‘forever in sunset’ with the ending to my pain ‘not quite done yet’. It feels like I have a dialled up case of the oh-so-human experience of predict the future. In addition to various medical interventions, one way I survive chronic pain is learning to be attuned to the slight shifts and changes in it, noticing and appreciating when in fact there is relief and pleasure too. Chronic illness, much like many forms of ongoing suffering, is a dance between accepting, adapting, resisting and hoping.
When I think about addressing suffering more broadly, and fighting against social issues that feel a bit stuck, I try to take the same approach of noticing change, reclaiming relief and pleasure, and remembering that no decision made by humans, and therefore no human societal structure, is inevitable.
Unlike Ezra Furman , I don’t agree that care and maintenance work has to be ‘boring and unsatisfying’. But I do understand how people arrive at that conclusion, without giving you a full Gender Studies-esque essay at this point, I just want to say that this belief is fundamental to our current dominant cultural and economic structure, but not to our human nature.
One aspect of our dominant culture that I want to discuss, because it’s often not central to debates on how we can better value care work - is the myth that care work is not an area of innovation, imagination, joy or pleasure. Something I learnt from ‘Care Work: Dreaming Disability Justice’ by Leah Lakshmi Piepzna-Samarasinha, is that the work of care has the potential to be interesting, creative, connective and imaginative work. It is work where you learn so much about humanity. It is work where deep knowledge has been built up by generations. It is work that can be fun and loving. It is work that is always open to new ways and ideas, because if nothing else, each individual will have particular ideas about how to care and be cared for. It is work that could be valued so differently. It is work that could distributed so it doesn’t feel a burden. I know this to be true because I, and many others, have carved out this alternative.
That being said, even if our way of valuing care radically changed, the day to day work of care may still have boring and unsatisfying moments. And that has to be okay. Part of shaking off capitalism is allowing ourselves to be bored, and then get curious about why some of the most human stuff we could do bores us. We tend to turn away from ‘boredom’ and towards the novel, in doing so we can inadvertently turn away from people who need support and care.
One way in which we can value care is to listen to and take leadership from those who speak from experiences that have required deep care. It’s worth noting that we all need care. And also, there is particularly developed knowledge in people who experience increased needs for care - be that those who are disabled, chronically ill, survivors and so on.
Culturally, we like to pretend that we are either ‘healthy’ or ‘ill’ and the reality is much more messy than that. Most of us sit somewhere in-between the two, symptoms shifting or sticking around. Those who aren’t disabled and/or ill now will experience this in some form in their lifetimes. Often when I talk about my experiences of illness people think I am speaking about something uniquely and especially bad that I experience. This comes for the most part from a place of concern and care, and an attempt to recognise what I’m going through. But it also comes from a fear I think, it is easier to imagine that severe pain and suffering is rare and something others experience than to hold in mind how common it actually is. Whilst each person’s bodymind is unique, my health story isn’t particularly unusual. Every time I speak about my health, I meet others who have similar experiences. The scale of chronic illness is massive - Endometriosis (1 in 10 people with womb based reproductive systems), autoimmune conditions (1 in 10 in the UK), long covid - at least 2 million in the UK. (The question of how we manage this scale was central to my masters thesis - and I’ll share more of that thinking another time)
All this is to say, for one reason or an other, most of us are managing some level of suffering in our present day to day lives, and perhaps longing for a future in which we receive respectful and nourishing loving care. In Ezra’s words, this future “is a text message sending: ‘Ouch, ouch, ouch’”. In other words, our future is mediated by what we send out into the world and how the world responds. As we send out our expressions of pain, we are hoping to hear a response that will soften the suffering in our present and change things to improve our future. Talking about suffering, especially in the context of trust, and witnessing it rather than bypassing it can make a world of difference.
In describing why she is choosing to publicly share her mental health diagnosis, writer Glennon Doyle highlights that we often hear of peoples’ difficulties after they have gone through them, in a sort of ‘ta-dah’ moment where they present a neat narrative arc of recovery. I’m better now and here’s how I got better. All done! She instead decided she needed to speak from within the experience. ‘The reason I’m not waiting for the ta-da or the after moment is because I don’t ever remember being an after ever in my life.’
I recognise the feeling of never arriving at ‘after’: My experience and diagnosis tells me often ultimate endings to my suffering are likely to remain out of reach. Part of me is forever waiting for the sun to rise on my pain. Over time and with healthcare and changes to my life, the light and dark of my pain has danced differently, in the last couple of years have had full days and weeks without pain. I do think it is important to hold out hope for endings, whilst also living in the reality of now. A specific illness may end, for example, by someone reaching ‘recovery’, but then life is complex and probably something else will happen.
However, in the last few months I’ve been experiencing a new different condition and I’ve been faced with managing a daily chronic pain again. This time round, with this newer chronic illness, I’ve managed to be more attuned to moments of relief and pleasure, to shifts in my symptoms. Most of the time, with effort, I have managed to hold my attention in the pain in such a way that doesn’t take over everything. This is the result of intentional care. This is the result of access to a range of support, both professionally and interpersonally, which isn’t available at the scale it needs to be. This is not something I have just magically arrived at, and I would never be so blasé as to just say to a chronically ill person ‘dude, just embrace the change ✌’. Instead this is a series of practices, not platitudes.
It would be remiss of me not to mention that a good understanding of the broader context of pain and suffering is an essential foundation to reducing it. To me, and I’ll write about this more in a future post, another essential step to addressing suffering in a caring way, is to get to the true root cause of the suffering. I do not mean the actions the individual took that perhaps increased their likelihood to suffer, I mean what is going on in the world that contributed to their suffering. Doing this gives us the potential to discern what I’ll call ‘inevitable suffering’ - that of loss, death, grief, heartache, change, some level of illness as the body ages or changes - from the unnecessary, often preventable suffering - that of violence, abuses of power, oppression, exploitation, illness caused by harmful systems.
Yes we will suffer as humans, that is inevitable. But we do not need to suffer as much as we do, our suffering is often needlessly created or dialled up by preventable factors. Taking this perspective means we can reassign responsibility and transform, or fundamentally change the systems that cause harm. This takes us away from privatising our pain (making it an individual’s burden to bear alone) and moves us towards collective responsibility.
An ending not quite done yet,
With care,
Rachel
Reading Suggestions
Ps. If you’d like to read along with me, I’ve currently got my nose in these two books:
Teaching Community: A Pedagogy of Hope by bell hooks
Healing Justice Lineages: DREAMING AT THE CROSSROADS OF LIBERATION, COLLECTIVE CARE, AND SAFETY, By Cara Page and Erica Woodland
And, off the back of this post, I would suggest reading this book, it radically changed and saved my life:
‘Care Work: Dreaming Disability Justice’ by Leah Lakshmi Piepzna-Samarasinha