Over the past few weeks, we've been sending out links to the ME/CFS Phoenix Rising Video. Over the past few weeks, we've gotten some very powerful responses.
This is my favorite so far.
A friend of Ron the Drummer's found the video touching and educational. He had heard of "chronic fatigue syndrome," the name most commonly given to the disease on this little corner of the planet. But because he didn't know anyone who had it, he'd never considered how horrible it must be to live with.
He thought the video and its message were worth passing on. He sent the link to several people he knew, including a cousin he occasionally corresponded with in e-mail.
Turns out, unbeknownst to Ron's friend, the cousin had been living with ME/CFS for 24 years.
Wow. Just ... wow.
Granted, the guy hadn't seen his cousin since before he got sick. Many factors conspire to make ME/CFS an invisible illness even when long distance isn't involved. And they may not have had any serious conversations over e-mail. Still, 24 years? You'd think in 24 years, the cousin would have mentioned something so big just in passing.
But then, I'm coming at this from the perspective of a healthy person. Later on I relayed the story to the person who inspired "Everybody Knows About Me," the song used in the video. His reaction? "That doesn't surprise me. It doesn't surprise me a bit."
There are a lot of reasons the cousin might have chosen to keep that bit of information to himself. Maybe the people around him had been unsympathetic, even derisive. Maybe he was tired of defending himself. Maybe, with so little energy left over for basic necessities, he didn't want to waste it trying to explain things to people who might not understand.
24 years of silence—broken because of a six-minute music video.