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!
Andy Jackson 
Akhenaten was my favourite pharaoh. He was so brazen and, in his politics, slightly mad. Would love to read poems about him.
A big congrats on your Arts Victoria funding! Very well-deserved.
Thanks Zenobia & Tom. I have things to live up to!
Great news, Andy. Congratulations!
I’m up for being grilled.
Very nice blog!
chegadessaudade.blogspot.com
Thanks Andressa!
Congratulations Andy. I look forward to your poem about Joey Ramone in particular. Surely it will need the refrain 1…2…3…4…?! I will ask around in my circles (medical) if anyone knows of someone who might want to contribute to your project.
Thanks, and ha! yes, it will also have to be fast and catchy!
Hi Andy, I put the link of this page on the home page of http://www.marfan.net.au I’m sure more people with MarfanS would like to tell you their story.
Thanks Trudy, that’s lovely of you. The more the better! 🙂
Wonderful news about your grant Andy. And sorry I didn’t manage to catch up with you in Launceston [my bad, as my daughter might say], I’d have liked to.
Thanks Ralph! I totally understand. With my partner Rachael being from Tas, I also didn’t catch up with as many poetry people as I could have – engagements with her family and friends were good though. Hope to see you again soon. Wishing you health.
My name is danish and 8 am fron india, i am a marfan syndrome patient… presently fighting with indian medical system, who are quite insensitive to this disorder…. if i can be any of your help please letme know
Hi Danish. I’m sorry to hear you have to fight with the Indian medical system – from what I know, it’s woefully inadequate for Indians who aren’t wealthy. What’s the main issue? Is it because the doctors don’t know much about Marfan, or is it because the health-care system isn’t funded well enough? If you need support and information, the Marfan Foundation is really great – they’re set up for people in the USA, but they’re very friendly and informative. or on facebook – and this is a good group too –