Jogging in Welsh Morning Fog by Bob Jagendorf, under a Creative Commons licence
‘How would you feel if you’d just been diagnosed with dementia?’ she asked us. Teresa Straczynski, Dementia Advisor for Edinburgh from Alzheimer Scotland, was providing a session for the SPL staff. After the mandatory shifting in our chairs a few words began to crop up, words such as ‘terrified’ and ‘confused’, or ‘frustrated’; phrases like ‘I’d want to learn more’. They’re all words, and we can only say them because we are lucky enough that our brains do the job of translating thoughts into a learned vocabulary.
I remember reading Iris Murdoch’s The Bell about ten years ago. When I wasn’t absorbed by the elegant knitting together of words and the subtle undertows, I found myself thinking that this writer had one day lost her words (Iris Murdoch was diagnosed with Alzheimer’s in 1997). To me this seemed like not only a cruel way for our bodies to show us what we’re really made of – brain cells, neurons, DNA – but also difficult to comprehend ever happening when captured by such a marvellously fluent novel.
As people who work with words and the facilitating of others’ words every day, I suspect similar thoughts might have gone through many of our minds when Theresa posed the question ‘How would you feel?’ As a writer, words are as important to me as my bones; they’re what I’m made of and what I use to move through the world. What if that were to go away? And what about second languages, or third ones? It’s all too easy to take for granted.
It’s also very easy to generalise. Loss of vocabulary is only one of the many possible symptoms of dementia, and we all have different fears as well. After the initial unease, Theresa’s group went on to discuss what a life with different kinds of dementia – there are over a hundred – might look like. As with many an illness, a sense of self-determination is crucial.
Not only does someone who has just been diagnosed have the power to learn more about a condition which affects 30-year olds as well as 90-year olds, but he or she can also decide what kind of care one wants. As someone living with dementia you can make sure people know about the situation; you can also make sure that it doesn’t define who you are. This is important not least for loved ones, who might be grieving when they see the change in someone they’ve known all their life. This is the kind of admirable work which organisations such as Alzheimers Scotland do, attempting to counteract stigmas and preconceptions with real information and support.
Stories are ubiquitous in this work: the ones we remember and the ones we tell in order to make sense of change. With our project Living Voices the SPL set out to try and use poetry to enable people in care homes to access and tell their stories. To me, it seems like the most difficult kind of translation: carrying over stories once easily told, and keeping those stories alive when some of the words are gone.
Jessica Johannesson Gaitán