a discussion between Alec Finlay and Caroline Gelderblom, on description and chronic illness
A: I’ve become increasingly interested in acts of description in my work: whether that’s in terms of patient-led medicine as a movement for change and means to push back against prejudice, or, at the level of the individual, where we can use words and images to define out of kilter lived realities, communicating how illness feels to others and, just as importantly, to ourselves, conveying pain, fatigue, and the distorting effects they have.
Description supports our ability to plot or project a life narrative–beginning with the moment we fell into a chronic state–and, through that, creatively adapt to difficult experiences. Words can even, it must be admitted, help us endure, or survive. And description of the things of the world also helps to connect us to them, even when our ability to enter the world is limited.
You recently wrote of how images might relate to the ‘injustice’ of ‘suffering’, be a ‘balm’, or represent the sometimes ‘disconsolate reality’ of our ‘very subdued existence’, expressing the body–the entity we occupy–in its ‘not doing’, as much as its ‘doing’, especially in the ‘hours and hours of lying down, being still and silent’.
Even the generation of words and images requires energy. They too must be measured in terms of the skewed ratio of minimal activity and long periods of rest–‘ if I do X I will need Y hours/days to ride out the aftermath’–which you refer to as the ‘void’, that is, the chronic experience of null time, of simply enduring, that’s ‘impossible to show’–though I think we do both show it, in words.
Words, you affirm, are a way for us to be ‘more than our circumstances’, that is, more than the reality the mechanism of illness imposes. Sometimes we need words–and perhaps especially, we need images–to resist the difficulty of how others (mis-) perceive our frayed reality. Aometimes we use words and images to ‘seek the beautiful’, as a ‘salve’, to ‘soothe the mind’, ‘find the good’, and ‘as a formidable opponent to suffering’. Language is intrinsic to recuperation.
I’ve written about such experiences of words, images, limits, and the functioning of the imagination–a machine for producing meaning which is held within the body but can go beyond physical constraints–in terms of ‘window poets’. By this I mean a poet like William Soutar (confined to bed), Shiki (confined to bed, home and garden), and, in terms of ME, an artist and writer like Marion Michell.
I even began to write a playful manifesto for this school of poets.
from the manifesto of The International School of Window Poets
align your sickbed with wind-blown clouds
and flowers
a garden is a wee world
let the sun shine through the window
onto your sickbed
the clock by the sickbed
is a candle
get a joiner to enlarge the bedroom window
Caroline, I’m interested in how the ability to describe evolved for you, in relation to your illness.
C: I always enjoyed English at school, whether it was reading, writing, or debating. I spent a lot of time at the local library and, in my teens, devouring song lyrics, feeling myself ‘in’ them, soaking up their emotions and picture-making. And reading ridiculously un-feminist magazines!
I became sick and was diagnosed with ME on my 14th birthday in 1993. A teacher, Mrs Bailey, taught me GSCE English at the dining table at home. I was unable to attend school from Years 9, 10, 11, and I was given 4 hours of home schooling each week. Studying Jane Eyre, Mrs Bailey taught me to be a convincing essayist, as well as encouraging (forcing) me to use a thesaurus to develop my language skills.
Then, at A Level, I studied Media, which made me consider descriptive language and representation in words and imagery. During employment, I’ve usually found myself in one way or another in communication departments, either through words or imagery.
Writing is something that naturally flows–although I struggle to be succinct and end up meandering through what I’m trying to convey, realising what I think as I write.
At the start of this particular relapse, in 2016, I was surrounded by people who didn’t know me as someone with ME. I’d been relatively well–or able to hide the symptoms–for around 10 years and, in that time, I worked and became a mum. ME seemed a past story, though it’s more accurate to say I had around 4 years of miraculous health, and 6 struggling and declining.
So, I suddenly found myself very ill, again and, whilst I was in shock about my rapid deterioration, the illness was something I knew. However, it was unfamiliar to many people around me–aside from my immediate family–and so I subconsciously entered a period where I was trying to explain, at great length, what was happening to me, and the reasons why. I was explaining to friends, to my children’s school, to my doctor, to wider family, to so many different people. I had seemingly disappeared and naturally, there was confusion, doubt, the usual suggestions of combatting illness and tactless judgments, as well as, of course, much well-meaning concern and care. I saw it as my duty to educate people and help them understand; to still show my ‘best face’ (or voice). I wanted everyone to believe me, to know I was trying so hard, but also to advocate on behalf of a community that had a difficult, even more silent existence in pre-internet days. It was endless in those early days and so difficult to convey everything that was happening as I rapidly declined.
Looking back, I see myself so utterly debilitated in bed, barely able to crawl to the toilet 2 metres away, spending about 20 minutes in total with my children each day, unable to dress or even feed myself sometimes. I’m frustrated that I thought it was important to use energy trying to convey my state of health and the wider ME landscape. Equally, I can see I was facing isolation and, sometimes, disbelief, or shaming, which I’d encountered previously, so I thought (in hopeful naivety!) that I could somehow avoid or minimise that.
My meandering and describing was borne of a need to try to make visible the invisible, and have my experience validated. I don’t think there are many correct descriptors–that I’ve found at least–for the sometime deathliness of ME, the shutting down of body and brain, the detachment from sense, comfort, predictability of body, spontaneity of life. That’s where words and words and words enter, trying to paint an unpaintable picture.
I’m also thinking of how our language changes as we try to persuade. People with ME in the past have been labelled militant in their pursuit for correct care. I guess that, against the backdrop of often cruel, abandoning implicit and explicit words spoken about people with ME, we use language that has to shout, fight back. It is directed against and, in the face of, a backdrop of woefully underfunded research, trivialised, berating media portrayals and uneducated, self-seeking ‘specialists’.
That kind of language around ME is for the audience, the onlooker, whose perception is clouded. It is language that speaks of pure desperation, neglect, and lives left lifeless; often screaming into an abyss.
I have and I will speak like that, when necessary, but it is deflating and exhausting, and requires so much from a body and a heart already broken by illness.
Also, there is the need for clear, concise descriptions of ME. We are describing constantly, aren’t we? It is utterly relentless. I’m now thinking of how on the rare occasions I leave my house, I never do so without fact sheets on ME, in the event I end up needing medical care (or meet someone who wants to know more).
There is a cacophony of medical trauma within the ME community, and I personally feel I need to protect myself, as much as possible, from further harm. Carrying around a fact sheet as a shield gives me a tiny sense of peace, although the need to do so feels incredibly sad.
After my initial push to make the world understand at the start of this relapse, I worked through my need to repeatedly reason, or explain to those in my world who continued to be either puzzled or apathetic towards me.
There’s also a silence that comes with longer term illness - after the initial concern, your strange isolated ongoing sickness becomes awkward or worse, normalised. You enter an unwanted role of ‘sick person’ as other titles fall away.
Less frequent texts still ask ‘how are you?’ Or ‘any better?’
And now there are the additional ‘Have you tried ..’ and also ‘I know this person who is now well because they did …’
And again, great lengths are gone to to convey with accuracy how it is to live like this, and yes, thank you, I’ve tried those things or no, thank you, that is harmful to me.
We ask in response how that person is, in the world we previously inhabited, and what I’ve found is that we are often greeted with silence.
No response to the information we’ve given and no response about their own lives.
Descriptions from others, from the outside world, disappear.
And those interactions–sick person describing, sharing, being vulnerable whilst friends become mute onlookers adds another level of deep pain to push through. Where I’ve felt less seen and less heard within communication than without.
I made the choice to stop describing in great detail. I became polite but guarded in direct text conversations so as not to cause further exhaustion, further grief, further isolation. I purposely muted or deleted myself on social media for about 5 years.
I saw it as a necessity to stop describing for the sake of others, wasting limited, precious energy, hearing opinions etc.
It was important that I hear myself instead, so I could work through some of the emotions that are so overwhelming when one is this sick. I suppose I started to describe what was happening just for me to process, to work through, and to believe my own voice.
I had done this in every period of sickness, from being a teenager, before there was a ‘community’ on our computers, and before there were many books to see myself in.
Like you said: the importance of descriptions for and of ourselves.
But I’ve found the voices of others who face sickness, or adversity, to be hugely important to me, in my loneliness and process. Others’ descriptions allow us to say, ‘Oh, that is me too’, with heartfelt desperation and gratitude.
Now I feel strong enough in my voice, and I want to not just hear and see others in similar situations–and, of course, a variety of other situations–but also to be more visibly part of the world. I’ve probably also been waiting to be more recovered, more physically able to enter the world again, but now I realise that is something which isn’t guaranteed.
I feel like I’m in a place of enjoying the act of description for myself, primarily, rather than desperately trying to describe for the sake of others, if that makes sense. I know even a 1 trillion-page book cannot fully describe this story, in a way to make everyone understand and empathise–that is the case for most stories that are unfamiliar to us, and I’m ok with that now. I want to describe the tiny moments that make up my life, not summarise the whole picture. I think!
I think that is the difference from the language of persuasion, when describing ME in exhaustive detail. Now my use of descriptions is more enjoyable, flowing–even when it is seeking justice or speaking about something that I’m angry about. It is more assured, I think, unwilling to convince.
I think it’s more implicit in expressing this type of life; where the often unnoticed become the stars of the day, the focal point in the absence of wider views.
I’m still very aware of that wider world view–my own damage from the language and actions directed towards and about me and this illness is something that's hard to dislodge–and I’m conscious of seeming as though ‘everything is so wonderful with ME!’ and equally ‘my life is worse than yours’. It is a balance. And maybe one I need to be less aware of so I can be as free as possible.
In the past seven years, I’ve spent hours, months, alone, hearing sentences in my head, writing lines down, that might be a tiny piece of the puzzle. Sometimes that writing is trying to work out how to get better physically, but mostly it’s how to keep going, or just to express myself emotionally.
In contemplating this, I’m aware that this time I also had to find constant, easy, gentle, honest but hopeful words to navigate my children through suddenly having their mummy in bed all the time. They didn’t know about my ill past–they were 6 and 8 when I realised. It was hard at first–and still is, sometimes–to ease the pain and disappointment of not being the mum they need, in the sense of being physically present at home, and very rarely at events they’re part of. I’m not the mum I dream of being, but I’m very present in so many ways.
I can see the specific language around illness towards my children has been hugely important, necessary, educative, and soothing. We have two outstandingly empathetic, deep thinking/feeling and justice-seeking children, which I see is partly due to what would be considered the unfavourable circumstances of their upbringing. And that is primarily due to communication and, therefore, dependent on description.
People kindly gave us books about parents and chronic illness, but I never could see my existence in the marbles-in-the-jar analogy or the low battery analogy- it wasn’t accurate for me, and I felt it risked giving false hope (that there was always a bit of energy to start each day) and a formula that often didn’t work (if you rest, you’ll find some more energy later).
Instead I found ways–often small sentences, or comic strip drawings–to try and convey something that had become suddenly so prominent and confusing in our family life.
Writing, creating, is my way to understand myself. When I see the words on paper, I’m surprised they flowed out of me, but I know they are my very essence, the core of me, the bit that’s unbreakable. Words, descriptions, show me who I am, whole, not just an ill person.
I had not thought before of the importance of the many different, layered forms of description when living with ME; of how powerful and common they are when describing the life of the sick, and how descriptions have been integral to my personal ability to create and survive.
I’m also aware of the descriptions I utilise for myself–essentially how I convey my situation for me, often only heard in my own mind.
Like all human experiences and expressions of that, I regularly find myself flitting between quite extreme perceptions of what I’m going through: from faithful to full-forlorn; peaceful to overwhelmed; accepting to denial; settling in to wanting to flee my own skin. What has changed in these descriptions/states of mind over these sick years is my ability to listen and acknowledge and allow the full range of emotions.
We are so harsh towards ourselves, even when we’re facing great turmoil. I’m learning to hear and hold what my description of that current hour or day is and to gently sit with it, without condemnation. I’m determined to keep speaking words of love, self-trust–celebration even–over myself, over this sick body of mine, over my family and home. That sounds like the most healing, powerful way to use descriptions.
Caroline was diagnosed with ME in 1993.
