Saturday, May 15, 2010

24 years

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.


DeppityBob said...

Just think of how many people are suffering silently because they don't want the scorn from people who won't understand. You happened to reach one of them, and you helped open another person's eyes. You've earned some pride.

John Wenger said...

There is a saying in the Talmud that someone who saves one human life saves the world.

TMHJR said...

Susan, there is also WILLFUL silence. I am the oldest of 7 college educate people. yet, even though i have been ill for 26 years, bed bound for 23, and worked 5 years to get "International Awareness day" off the ground only 1 of my siblings has even visited our website. He signed the M.E. petition and that was it....I think i will email them the youtube link to the great video of your brilliant song. who put it together? Cort and company? i need to send him a congratulatory note, if so. i think this is a great partnership of words, melody and video
that work together to get the truth out. very well done! TMH

cinderkeys said...

Thanks, everyone. :)

The willful silence is out there for sure. It's part of what leads to the decisions to just not bother telling other people.

The pictures in the video are from people on the Phoenix Rising forum, and forum members also offered suggestions. The actual video editing was done by a couple of people -- one goes by "StarryEyes" on the forum, and the other is her (healthy) husband.