Wheeler Centre Hot Desk Fellowship
This blog isn’t what I would describe as the happiest you can find, but I hope it has its moments. Like today.
I am darn excited.
I have been awarded a Wheeler Centre Hot Desk Fellowship in 2015. I will have a desk at the Wheeler Centre (in the third cohort in October and November), where I will work on a long-term online writing project provisionally called Chronicles of Chronic Disease.
Chronicles of Chronic Disease
Cohen, an Emmy award winning American journalist and a man living with MS for more than forty years, chronicled the lives of five ‘citizens of sickness’. He provided the platform for them to share the hope and despair they live with on a daily basis. He allowed them to tell their real story – not the politically correct, sanitised version of it.
For anyone who is interested, I hope to do the same in Australia. Because those of us with chronic disease represent a community within the broader community. And this community – regardless of which disease we have – is forced to contemplate scenarios that the generally healthy do not. Alzheimer’s, Huntington’s, Lou Gehrig’s, Crohn’s, Parkinson’s… Living with one of these diseases forces one to consider what was previously taboo. This is a lonely experience, one that is not easy to talk about even with loved ones.
I hope to talk to people with chronic disease about the grief they face. About their failed relationships. About their choice whether or not to become a parent. About the reality of disability, and the degrees of acceptance it is possible to have. About changing their life plans. And about the suicide plan many of us have, just in case.
Because the decisions that those with chronic disease and their loved ones make are hard. Everyone reading this blog knows people facing these tough choices. And even if they are published anonymously, they deserve to be known and they deserve respect.