There’s nothing like waiting for the results of a funding application. I’m in the habit now of expecting nothing. Which makes it all the more celebratory when the letter actually says “yes”. Thanks to Arts Victoria, I’ve begun a poetry project very close to my heart, figuratively and literally.
“Marfan lives” (ambiguity accidental originally but deliberate now) is a series of poems based on the lives of people with Marfan Syndrome, both historical and contemporary, well-known and everyday. I’m thinking of the allegedly Marfan-affected, like Abraham Lincoln, Akhenaten, Paganini and Osama bin Laden (?!), but also of people such as Edith Sitwell, John Tavener, Jonathan Larson, Vincent Schiavelli, Robert Johnson and Joey Ramone.
But I’m also currently seeking to interview regular people, from all backgrounds and histories. Because this project is about diversity and variety, how a genetic condition can shape people’s lives, sometimes dramatically, other times in a very subtle way – how it may make life hard for some, but how it may even give some people exceptional abilities. It is a condition I inherited from my father. He died when I was 2; my particular manifestation isn’t of the heart but the bones, particularly the spine. So, it’s not just academic or aesthetic for me.
I’m interested in the stories of anyone with Marfan Syndrome, especially first-hand, but also from family members and friends. If that includes you or someone you know, please contact me through this blog. Thanks!