The launch of descriptions a patient led description of M.E.
June 09, 2022
Last night Action for M.E. and poet Alec Finlay launched Descriptions at the Scottish Poetry Library. Scottish actor Mark Bonnar was the narrator of the audio version of the piece. Audio segments were played throughout the event. The event was held to illuminate the impact M.E. has on people’s lives as well as the wider story of living with a chronic invisible illness.
“Descriptions has been the most painful project I have worked on, and one of the most important. The pain came in reading so many accounts of loss, anguish, and experiences of prejudice, but that is also what makes this work so important. “I was humbled by the length and depth of the responses, and aware of the energy this will have cost. It was a reminder that this community has felt so erased for so long”. Alec Finlay
Alec acknowledged that the process of answering and completing the survey would have been very difficult for many people due to the energy needed to access the survey. Then to read and process the questions and respond. Alec and Action for ME are incredibly grateful to everyone who took the time and energy to participate. Their words have powered the poem. The survey had 35 questions and it was made clear that people only needed to complete how little or much they could for any question and that they did not need to answer all questions just the ones that they felt able to complete. The survey closed on the 31st of December 2021 and over 200 people contributed.
All responses remained anonymous, but people could give their names and be credited as a contributor to the poem.
The event gave Alec Finlay the opportunity to answer questions alongside our Chief Executive Sonya Chowdhury. You can now purchase physical copies of Descriptions at cost price in our online shop. An online PDF version of the poem can be accessed for free here and an audio version narrated by Mark Bonnar is available here. This takes 54 minutes to listen to and can be paused and returned to as needed.
Extract from descriptions
“you don’t look ill”
“there is nothing physically wrong with people with ME”
“get on your bike and go for a ride, that will fix all your problems”
“if you really wanted to get well, you would”
“must be nice to get to lie down so often”
“you’re just tired because you sleep all the time”
“I wonder if your symptoms have become self-reinforcing?”
“your thoughts are wrong, that’s why you’re ill”
“your brain is just imagining you are in pain”
Alec Finlay became ill with M.E. at 21. His mum, Sue Finlay, founded Action for M.E. in 1987 after submitting an article about M.E. to the Observer and receiving 15,000 letters in response.
Alec’s work as an artist takes various forms and media, including poetry, sculpture, collage, audio-visual, neon, and new technologies.
Reflecting on this project Alec has said, “Descriptions has been the most painful project I have worked on, and one of the most important. The pain came in reading so many accounts of loss, anguish, and experiences of prejudice, but that is also what makes this work so important. “I was humbled by the length and depth of the responses, and aware of the energy this will have cost. It was a reminder that this community has felt so erased for so long”.
Interview with Alec Finlay and Phoebe Boag – will be released at the same time as the book launch in June. Phoebe has written about this project on her blog.
The interview will be available at The Disability Arts.
Long Covid and podcast episodes
Alec also has Long Covid and has taken part in a couple of podcasts to talk about his experiences of M.E. and becoming ill with Long Covid in March 2020. Alec uses these podcast episodes to talk about what other illnesses like Long Covid can learn from ME and the experiences of people with M.E.
The first podcast, Learn about M.E. and Long Covid (May 2021) is part of the Learn about ME project. The other is, Covid Matters: The journey to Scotland’s Covid Memorial: Alec Finlay on Long Covid, ME, the importance of pacing and recuperation, and the role art can play in collective recovery (July 2021).