Last weekend while stuck in the car for six hours I was flipping through the newspaper reading about some of the films being show at the Vancouver International Film Festival (VIFF) when I noticed a name that was familiar. Turns out there is a film in VIFF this year called 65_RedRoses that is all about a young woman, Eva Markvoort, from New Westminster (where I grew up) and her journey a few years ago through a double lung transplant. Eva is a year younger than my brother and was in French Immersion with him and she is four years younger than me, which is huge when you are school aged, so I don’t really know her. That hasn’t stopped me from being totally amazed by a few different aspects of this story.
When Eva was little she was diagnosed with Cystic Fibrosis (CF). A few years ago, while she was in university she was told that without a double lung transplant she would die. She quite school, moved home with her parents, let her film-maker friends start filming her and after what must have been a difficult wait, had a double lung transplant. What is most amazing is that she has kept a public live journal since July 2006, more than a year before she received her transplant. Her live journal 65_RedRoses is unbelievably intimate, personal, honest and moving. Through it Eva has captured so much about what it is like to live with CF and makes it more real and understandable for people who do not know much or anything about this disease. Reading through her entries makes you feel enormously privileged to have her share her experiences with you. If anyone can read even a few entries and not become an organ donor I don’t know what to make of that.
The reason that she started the Live Journal was to seek support from other young people living with CF. Apparently people with CF are discouraged from meeting with one another in person because there is a risk they will spread potentially fatal superbugs to each other. Now because of the internet and web 2.0 people with CF, like Eva, are turning to the internet to form supportive communities. Now people with CF have a way to connect to each other and offer support, advice, and understanding cyber-shoulder.
At the end of our module this week one of the questions we were asked to consider was “Haven’t we always shared and collaborated?” If we is information professionals I think the answer is probably “Yes” but there are obviously examples out there of groups who have not shared and collaborated before because they were not able to. The example of Eva and 65_RedRoses gives us a very different example of how social media is being used by people to share, support and collaborate with each other and social media software is what has given them this option.