The author Jan Carson writes about the role of memory – and its loss – in her books and in her life.
There are over one hundred different forms of dementia
Many affect younger people, but most people who develop dementia do so in later life.
As well as being a writer, I run creative writing workshops, music and dance events and festivals for older people. I regularly work with people living with dementia, helping them to write or record their own stories or respond creatively to another artist’s work.
These experiences have had a significant effect on my own writing. Recently, I’ve been crafting characters who are both living with, and directly affected by, dementia. I have also been researching aphasia (a language impairment) and language loss. I’ve been looking at the work of other artists who have thought about this topic, and trying to implement aspects of it in my own writing. The deliberate loss or restriction of language has forced me to be more creative, using what remains of my lexicon to write stories in a fresh way.
Losing memory is like misplacing the rule book
Memory reminds us who we are, how we usually behave and react. Memory loss can be deeply unsettling.
My first novel, Malcolm Orange Disappears, is set in a retirement community. The book is about ways in which the elderly residents are beginning to ‘disappear.’ One has lost his sight; another, his libido. Others are struggling with constricted movement and language limitations. Most of the characters are beginning to misplace the names for people, places and things, and confuse their memories. The characters abandon all order as they forget how to relate to the present.
Memory loss is fundamental to these characters’ sense of self. Without a clear understanding of who they were, how can they comprehend who they are now?
The characters in the novel are unsettled because they can no longer remember details from their past. They form a group called The People’s Committee for Remembering Songs. They hope that recalling old songs as a group will help them remember who they are.
'The act of remembering provokes creativity.'
What transpires is something I’ve often witnessed while working in community arts. The act of remembering provokes creativity. In singing old songs, new variations begin to appear on the lips of the elderly residents.
To focus entirely upon reminiscence implies that a person’s greatest worth is in the past, and that their best moments are over. But using memory as a starting point for writing a poem, or creating a piece of art, gives value to the past, and shows how it can affect the present. I believe that everyone has worth and meaning in the present, and the ability to grow and learn until the end of their lives.
Much of my writing about memory is inspired by the older people
I am fortunate to have had grandparents who lived rich and interesting lives. Recently, I’ve been inspired by a huge collection of old family photographs which I inherited from my grandmother after her death. However, I’m not interested in writing a factual account of my family history, or recording the stories from the people I work with now.
I like to make things up, and I love the way memories are never entirely reliable. Memories are usually one person’s experience of an incident. People favour certain details when they remember. When working with people living with dementia, I find that their memories are partially-remembered and fragmentary. They are often already in the process of becoming fiction, even as they’re recounted.
In some ways, there is less pressure on a fiction writer who works with memory
I don’t feel the responsibility of a non-fiction writer, trying to achieve accuracy and recount facts. I begin with a small kernel of remembered, or half-remembered truth. I fuse, bend, blend and focus upon whichever detail seems most intriguing. In the end, I arrive at something new.
The stimulus may have been a memory but the end product is distinct, and relevant to the present moment. I see this process as intuitively bound to my work with people living with dementia. If something beautiful and relevant can be clawed from the fragments of the past, there is dignity in the process.
It is a reminder that a person’s voice does not disappear. It merely changes to meet the needs of the moment.
Therefore, when writing characters who are living with dementia or struggling with memory loss, I don’t try to achieve accuracy. It’s not my responsibility to raise awareness of issues associated with dementia in my writing. I’d rather make connections between the reader and the story.
I do try to capture the confusion, frustration and occasional liberation of people who have forgotten who they are and where they’ve come from. This requires precise writing. I must write enough specific detail about a person to preserve the realism of their character and situation. I must also allow description, dialogue and recorded thought to meander, honestly reflecting the experience of a person living with memory loss. I give the reader a lot of responsibility, allowing them to interpret a character’s thought processes.
'A person’s voice does not disappear. It merely changes to meet the needs of the moment.'
In my short story, Proper Order, an older lady living with dementia tries to arrange her room in a residential care facility. She no longer remembers what is important and what is of little worth: she gives her diamond engagement ring the same value as a slice of cooked ham and an unused tea bag.
I often witness this kind of confusion when working with people who are living with dementia. I am increasingly drawn to current research often cited by the Alzheimer’s Society which suggests that it is not as important to remember the details of an incident or item, as the emotion which is attached to it. Or, as my granddaughter-narrator concludes in Proper Order, 'I think that worth is all about how we order things: which things come first and which are last to go.'
I may not remember the details of a story, but I will remember how it made me feel. This is relevant for artists. The details of a book or film may be hard to recall, I might remember a particular scene, a character or plot twist, but be unable to recount the finer details, mere hours after it’s over. The true and lasting strength of a piece of art is how it made me feel. The emotion associated with an art work is much harder to forget.
When people lose language, some words take on resonance beyond their etymological meaning
Other provocative words – love and hate, place and people’s names, and profanity – often lose meaning.
I am interested in how people living with dementia experience language loss. I was attracted to this area of research after watching a documentary called You’re Looking At Me Like I Live Here, But I Don’t, about one woman’s experience of memory and language loss. The interviewer asks her what sort of relationship she had with her husband. The woman, constrained by language loss, replies, 'I don’t know. The air in here is very good.' The restriction of language had forced her to come up with a poetic, almost metaphorical, answer to the question. I could immediately see the creative potential.
Aphasia affects many people living with dementia. The brain misplaces or forgets certain words or constructs. A person tries to communicate effectively, but is missing many of the building blocks we use to communicate. Many of the people I work with find routes around these language blocks, substituting different, and, often, odd words, for the words they’d misplaced,
I often create my best work when responding to time pressure, tight word limits or non-negotiable themes
Removing certain words and phrases from my lexicon allowed me to be more playful with language. Last year I was fortunate to work with the actor Liam Neeson on a commissioned radio play for BBC Radio 3 – UnRaveling, about the composer Ravel’s dementia and memory loss. It was written in an aphasia voice. It was a challenge, which forced me to be creative in my approach to storytelling. It’s one of the pieces I’m most proud of.
When it aired last July, I received some really positive emails and tweets from members of the public who could easily empathise with the situation depicted. Despite the ‘difficult’ language, listeners seemed capable of understanding the core emotions of the play. In some ways the fractured speech, forced them to interpret what Neeson’s character was trying to say and this effectively replicated the relationship between a person living with dementia and a loved one, trying to communicate.
I’ve learnt that memory changes over time, through context, with each new telling
In Donal Ryan's latest novel From a Low and Quiet Sea, Farouk, the refugee who features in the novel’s opening section, re-tells the story of his escape from Syria. He adapts and evolves this story, through over-familiarity, (he is repeatedly forced to recount his own experience), frustration and the desire to make his story more appealing. Even the most traumatic of memories is not fixed.
If memory is not a concrete concept, then it can be a springboard into something new. Lost or misplaced memory can be an opportunity for re-interpretation. This might be seen best as a form of translation; recounting what is known and filling in the gaps to add meaning. Language restriction can be a new way of expressing emotions, experiences and concepts.
'If memory is not a concrete concept, then it can be a springboard into something new.'
When I write material based on the stories and memories people have shared with me, it feels like someone has graciously given me the bricks to build with. I see this as a responsibility, and I do my best to serve the memories I’m given. I write the stories, but the stories always seem to shape me. I am a better writer and, dare I say it, a better person for the experiences I’ve had working with other people’s memories. I learn as much, if not more than I impart, through this process. My own memories are being formed out of interactions.
Or, as the indigenous Australian artist and activist Lilla Watson more eloquently puts it, 'If you have come to help me, then you are wasting your time. But, if you have come because your liberation is bound up in mine, then let us work together.'
Jan Carson will be at European Literature Nights on 15 and 16 May, where she will discuss the theme 'What time is it?' with authors from across Europe.