Last week, I participated in the 65 Hours of Silence for CF event, where people would donate $6.50 (or more!) to a CF organization of their choice, then forgo the use of social media until their 65 hours was up. Some people argued against going silent, but I fully supported this tactic. Yes, CF needs a voice, and we have to talk as much as we can because of it being an orphan disease that doesn't have a lot of awareness; however, this is a case where I strongly felt like I've "screamed" enough (and I know people have even gone as far as to hide me on Facebook, at least for a few months out of the year, because of fundraising and whatnot), and I, along with thousands of others, decided that maybe it's time for the quietest voice or silent voice to try and gain some attention.
Like so many people, particularly those in my generation, I rely on social media to communicate with people and just pass the time. I'm fully aware that I use it a lot, so I knew this could turn out to be a challenge. I completely avoided Facebook, the online message boards I post on, and even went as far as logging out of Goodreads so I wouldn't be tempted to message some of my friends on there and therefore skirting the entire point of no social media.
I'd be lying if I said this was really easy. So many times throughout the day, I'll reach for my iPad or my laptop and log onto Facebook to chat with friends or connect with other CF parents/patients and ask questions. I intentionally didn't boot up my laptop until my 65 hours was up so Facebook wouldn't tempt me when I opened my browser. During the silence, I often tapped on my "social media" tab on my iPad and was tempted to log onto Facebook or Messenger because it's a habit. The first day (Wednesday) wasn't too bad, but by Thursday I was starting to get antsy.
Part of what triggered the itch to log back into Facebook was the realization that I didn't have my CF supports a click or tap away. Thursday morning, during Judith's AM vest treatment, I noticed what I thought was a small leak near the part where the hoses attach to the vest. I usually don't call the vest company right away unless the problem is really big or really obvious, and I will usually post on our clinic support group page or the big CF page to see if anyone else had a similar issue, and if it's normal or not. With this leak, I wasn't sure if it was the normal venting that the inCourage does and I was oblivious to it until that time, or if it was a true problem that would require a new vest.
This time of silence made me realize how isolating this disease really can be, especially if you don't have access to the technology to make connecting with others possible. Because CF patients aren't supposed to be around each other, it's really hard to connect with other parents who know exactly what you're going through. Connecting on the internet is so fast and easy, and I'm spoiled that Judith is so young and I've had the ability to connect this way for her whole life. I'm grateful that the technology is what it is, because as Judith gets older, she'll be able to safely connect with other CF patients her age, and talk about the disease along with other typical stuff.
I have to admit, though, that unplugging was nice, and taking that break was good for me. I always knew that Facebook especially is a big distraction, so eliminating that helped me focus on other things when I had down time. Most evenings I like to read or play games to relax, and right now reading is my activity of choice. I've been working my way through George R.R. Martin's A Song of Ice & Fire (the Game of Thrones books) series, and I was able to make some great progress in A Storm of Swords.
I'm not sure if this event will be an annual thing or not, but I hope that it will be, and more people will participate next year. I know I'll certainly sign up to do it again!