I’ve personally been “on” social media since around 2004, when Facebook still required .edu email addresses and I was still a student at the University of Minnesota. I used it minimally until about 2007, which is also when I got a Twitter handle (feel free to follow me at @jamielmartin). That was at the urging of Guy Kawasaki, who I first heard speak about the channel at the now defunct Stanford Digital Publishing on the Web course. Since then, social media has been a constant presence in my life — at work, at home, on the go.
There have been times I’ve thought of quitting certain social media personally because of how addictive it is: I check Facebook before getting out of bed most mornings; I peruse various feeds while I’m breastfeeding my 6-month-old; I often have my computer, phone and TV on at the same time. Much of the time, I’m just surfing, with no purpose other than seeing what’s going on with family and friends.
In the past few weeks, though, I’ve gained a whole new appreciation for social media and the power it holds to connect. In my previous post here on Unedited, I wrote about my 7-month-old nephew’s recent health issues. Since then, we’ve learned that he has a rare and incurable degenerative genetic disorder called Krabbe Disease, which affects 1 in 100,000 in the United States.
Krabbe is a devastating diagnosis with limited treatment options and resources.
Initially, we were in a constant state of shock and disbelief. As the reality of the situation sunk in, however, my sister started taking action, and we all followed suit. Through Facebook, she’s been able to connect with other families whose children have Krabbe Disease. She’s read their stories, discovered resources, and received the much-needed support and understanding that only other parents with children afflicted by Krabbe can offer.
Typing “Krabbe Disease” into that Facebook search field has lead my sister and all of us down a quick path of discovery, and I’ve never been so grateful that it’s this easy to connect around a common cause, issue, and in this case, a chronic health condition.
Since my sweet nephew’s diagnosis, my time online has shifted: Instead of just perusing aimlessly, my activity has a meaningful purpose. I’m seeking out more Krabbe resources and stories. Liking one page connects me with another … and another … and another. Who knows where it will lead me — but it feels good to be doing something, anything, to help.