The Book of Illness

This written discussion between Alec Finlay and Louise Kenward is one of a series Alec has been conducting with creative people who have experience of chronic illness, mostly ME or Long Covid. The conversations are particularly concerned with the generative and activist roles of witness and patient-led medicine, to counter prejudice and misunderstanding in the medical profession and society as a whole. Finlay published an essay in Kenward’s recent anthology, Moving Mountains: Writing Nature Through Illness and Disability (Kenward 2023). Moving Mountains is a first-of-its-kind anthology of poetry, prose, essay and artwork exploring engagement with the natural world from the perspective of those who do not move through landscape in ways typically presented in nature writing. The discussion was sparked by an exchange of emails, one of which is referred to in Finlay’s opening remarks.

Alec Finlay: We have discussed how sometimes we compose a work or project and, after the fact, realise it was, in your words, “the thing I needed and wanted to read years ago when I first (or second) became sick.” This intuitive self-care is a fascinating aspect of what it means to inhabit a creative mind – the creative as the anticipatory, or the revelatory, not in a religious sense, but as an uncovering of deeper truths.

Some of the most moving work that I’ve engaged in relates to diseases which I have no experience of – for example, brain cancer, suffering caused by low winter light, organ donation – and, in each case, I found enormous comfort in the ability to translate, imaginatively and empathically, between my pain, limit, or loss, and theirs, whoever the participants were, and however their symptoms manifested. I think the same process is at work here.

The essential reality of most dis-ease is that it renders temporal and physical reality strange, fraying one’s sense of self and belonging, and, in consequence, brings about isolation, and sometimes, when a disease isn’t accurately represented in society, shame.

In each of these projects I found an empathic commonality, and I’d have to insist this was regardless of gender, race, or age. That was incredibly and mutually comforting. Working with these communities was a way to evade the identity tribalism that has eroded empathic culture. In the SAD sessions especially, the group was diverse, and I found myself focusing on the concept and value of vulnerability as an experience we all shared, and a source of wisdom.

That arc in such participatory or anthological projects tends to be: sharing and affirming pain, limits, grief, feelings; then finding the result, shared vulnerability; which brings about a metamorphosis; and what emerges is a generative body of knowledge, coalescing into a practice of what I would term creative adaptation – … that arc seems to be widely true, and a similar process seems to occur with most diseases. The creativity needn’t be art in a narrow sense, but more a renewed relationship with the self, which may allow someone to rest when they need to, or seek light, or any small healing change.

A photo of a stone structure with an entrance and a grassy top surrounded by trees
Taigh, National Memorial for Organ and Tissue Donation, Royal Botanic Garden Edinburgh, Alec Finlay, photo by Hannah Devereux, 2014

Of course, there are differences of emphasis, for instance, trauma, or terminal illness, or diseases of very limited energy, aren’t identical. But, in some deeper sense, the experience you described, where the book you made became the book you recognised that you had needed all along – a recognition confirmed by others – seems to be true for many of us when we engage with the commonality of illness.

At the heart of this, I would argue, is the act of witness, and the practice of description, when it is shared in a peer-to-peer or patient-led situation. In my experience, to collectively describe a disease – shall we say, to create its book – creates a new relation to the symptomatology as it’s experienced. One becomes less a victim of the ‘machine’ of illness. This witness, in turn, creates a generative and communal spirit which has a potential for change, and which is directed towards healing. In political terms, this book of illness affirms the right to a just form of care.

I truly believe that every disease requires a collective patient-led description, a book, like a shadow volume paired with the medical description. To be seen, and to be seen to be seen, to talk and be understood, to listen and recognise, is the richness and radicalism of a patient-led philosophy.

I’ve worked with this approach in projects such as descriptions (people with ME describing ME) (Finlay 2022), light is a right (people with SAD creating a manifesto to help with SAD), I remember (people creating a collective book-length memorial of the ongoing pandemic), and wondrous sore (on the experience of domestic violence).

I agree with you, that when one creates such books one also realises they are what one needed, and what others needed. Even more, in a sense, perhaps they already existed, hidden within our consciousness?

I think this touches on a mystery of ME and Long Covid: what is it, particularly, about those diseases that seems to produce a denial of belief, and of care, at an individual and social level? Of course, every disease is liable to neglect, but I perceive a particular kind of blindness, erasure, and aversion, where the so-called ‘invisible illnesses’ are concerned. I suspect this refusal, to recognise and care for these diseases, has at its roots, a primitive fear of malaise arising in Capitalism.

A black and white book cover with the titel 'descriptions', author name 'alec finlay' over a photo of a body under a blanket
descriptions: a patient-led description of ME. Alec Finlay, created from the responses to 300 questionnaires. Cover image photo by Hannah Devereux, 2022.

Louise Kenward: This helps me to think about some of those things that might be the ‘bleeding obvious’ and yet can become (or seem) out of reach – perhaps because when we’re immersed in something we don’t always see it, but when a project ends it can be hard to remember. Things that might have become so everyday can hide in plain sight, we fail to see them or do not recognise them as the extra-ordinary things they might sometimes be.

In putting Moving Mountains together I’ve had the perspective of the practicalities of editing an anthology, as well as each personal connection and conversation with the authors and artists. This has been over a sustained period – from the conception of the project to realisation, about three years in all. It has created a whole community for me, and I hope for others too.

From researching potential contributors to receiving submissions I have seen my own insecurities and vulnerabilities reflected back in emails and conversations, and (I hope) have been able to reassure and support contributors in a way that is not always usual in publishing generally. There is doubleness in this, in attending to our vulnerabilities as creatives, in addition to our vulnerabilities as disabled and chronically ill people, doubly exposing, doubly revealing.

Several contributors had not previously identified themselves publicly, or named illness/disability in their work, and I had been worried about being too confrontational or challenging.

I have been mindful throughout of trying to get a broad range of experiences as well as genres and types of work, while making sure contributors were never expected to share anything more than they were comfortable with. While a range and breadth of experiences is reflected in the anthology, there are also many commonalities which I think come through strongly and perhaps relate to the things you have experienced in your work too, and in your naming of ‘witness’. The process of compiling the anthology has helped me see how much overlap there is in the impact of societal ableism, as well as the vulnerabilities of our bodies and the impacts they have on all aspects of our lives. I think this needed to be an anthology precisely because of this, for there to be a sense of collective and community and allyship with contributors.

A close up black and white photo of a leaning tree propped up by a structure made of timbers, attached by what looks like a leather strap
‘I Remember, Scotland’s Covid Memorial’. Alec Finlay, 2022. Photo by George Logan.

Writing the introduction to the anthology I was also conscious of the need to offer a range of audiences an access point. I have wanted to offer it as a protective blanket around contributors and their work too, contextualising and naming some of the difficult things we endure as chronically ill and disabled people, not because of our unreliable bodies but the attitudes and lack of regard for them in society.

The universality of experience of society that we experience in long term illness is something I think is illustrated in Moving Mountains too, despite the varied individual experiences, situations, and diagnoses. The most powerful themes for me are the shared sense of living in a different world to the one the un-sick and non-disabled do. We see the gaps and pitfalls in thinking and actions of the world around us but are universally ignored and dismissed because of those experiences too. It’s not until you fall that you get to see things in the same way and until you experience it it’s hard to believe. That level of cognitive dissonance is something I’m hoping the anthology can begin to undermine. I think creative practice (art, writing, theatre etc) are some of the best ways of addressing this. Having spent years, I think trying to explain, asking people to understand, I feel I’ve (and the process of compiling the anthology has been a part of this) moved into a different place in shifting my desire to defend and justify myself.

You’ve also made me think of an interview I saw recently with Ocean Vuong, talking about writing and vulnerability. He regards writing as a transformation of anger, and I’ve found this especially true in writing about illness and my own experiences. He considers writing as an act of care, and I love the framing of this. I hope that Moving Mountains is received with the feeling and consideration of care that it has been sent out into the world with. I think there is something particularly remarkable that can be sent out into the world by those who have not had the care they needed but can offer it to others. As you mention the field of ME/CFS and Long Covid, large patient groups who have long been subjected to particularly painful levels of denial and dismissal, by medicine, healthcare, and research, I am struck also by how much care there is shared within this community, as if when care and regard is found wanting, so we find ways to generate it for ourselves. It makes me wonder what truly patient-led healthcare/society could look like.

In the absence of effective healthcare (and perhaps also with), it is a powerful thing to experience validation and value when we see ourselves reflected in other peoples’ stories.

About the authors

Louise Kenward has ME; she curated and edited the anthology Moving Mountains: Writing Nature Through Illness, with contributions from 25 authors living with chronic illness and physical disability.

Alec Finlay is an artist and poet with ME and Long Covid. He created ‘I Remember, Scotland’s Covid Memorial’ in Pollok Country Park Glasgow. He is on Instagram @alec_finlay.

References

Finlay, Alex. 2022. descriptions: a patient-led description of ME composed from the words of people with ME. Action for ME.

Kenward, Louise (editor). 2023. Moving Mountains: Writing Nature through Illness and Disability. London: Footnote.

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