Getting sick when you’re young is isolating. There are rites of passage we will all go through someday, and usually you do them with your cohort. It can be hard for folks who have not gone through something like this to understand. I feel like I’ve joined a new tribe at the age of 30, and now those are my people. Then suddenly, this strange thing happens, and we feel like long lost family. We’ve known each other for a long time through mutual friends, but were never very close.
When you do what you love or feel called to do, you pay.ĮVA: Let’s catch our readers up to how we got here - online, having a conversation about being sick. So today, I woke up and my heart rate is about 110 when I stand, which isn’t as bad as it gets, but it means I can’t even sit up in bed without stressing my heart. Then suddenly, you feel like you have your powers back, so of course you use them. You crash, you rest because you can’t do much of anything else, and then very slowly you start to climb out of the hole. I was doing great the last few days, and today I’m not. Recently, they met up on the internet (one of the best ways for sick people to connect), to talk about what they have learned, how hard they’ve had to learn it, and making art in the time of illness.ĮVA: OK, so: here we are! I think I want to start with asking a really basic question which is, how are you doing in this moment right now - where are you, and what has your day looked like? Canary in a Coal Mine ran a Kickstarter campaign earlier this year that raised over $200,000, while It’s All In Your Head was a bestselling Kindle Single and selected as one of Amazon’s Best Digital Singles of 2013. And then Eva wrote a memoir, It’s All In Your Head, about her experiences searching for - and failing to find - a diagnosis of her own. Turns out Jen was making a movie, Canary in a Coal Mine, which documented multiple peoples’ experiences with myalgic encephalomyelitis, her diagnosis. Really sick.Įventually, she reached out to Jen. A year and a half after that, Eva got sick. Three years ago, Jen got sick - really (and for a long time, mysteriously) sick. Eva moved first to New York City to work as an architectural journalist, and then to Berkeley, where she got a master’s degree and then invented her own PhD program. After graduating, Jen moved to China and worked as a journalist and then to Cambridge, Mass., where she started a PhD program in Government. Jen Brea and Eva Hagberg met 15 years ago, in college.
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