Ever since writing "Everybody Knows About Me," our ME/CFS advocacy song, I've had this fantasy. We're playing at a coffeehouse. Someone with ME/CFS is in the audience, and she (or he, but I'm going to make her female because I hate writing "he or she") is there with friends. While her ME/CFS isn't severe (she couldn't leave the house if it were), the outing takes its toll. She wants to go home and collapse. Her friends, well-meaning but clueless, negotiate with her. Just another half hour, they say.
She doesn't want to argue, so she tries to hang in there. We finish whatever song we're playing, and I launch into an introduction:
"I wrote this next song about somebody living with myalgic encephalomyelitis, a disease that causes chronic pain, crushing exhaustion, and, in many cases, early death. If you've never heard of heard of myalgic encephalomyelitis, that's probably because it more commonly goes by the term 'chronic fatigue syndrome,' which is a stupid name for a serious disease. The song is called 'Everybody Knows About Me.'"
This grabs the attention of everyone at the table. Though they came to socialize, now they stop and listen to the words. The person with ME/CFS feels vindicated. The friends are chagrinned, realizing that on some level they had assumed she was being overly dramatic. Everyone goes home at the end of the song, and her friends take her more seriously from there on out.
That's the fantasy.
When we played "Everybody Knows About Me" at the Tucson Folk Festival this Sunday, I hoped we could make that kind of connection with the audience. That somebody listening would be happy that somebody else understood. Maybe that happened. I don't know. But the one story I heard ended differently.
Ron the Drummer found out that someone he knows went to see us play. With her was a friend who has ME/CFS. They left in the middle of our set because "Everybody Knows About Me" made the woman with ME/CFS uncomfortable.
I always assume that some, or even most reactions to our music will be lukewarm at best. It doesn't matter who you are: not everybody is going to be a fan. So if this particular woman had wanted to leave because she thought we sucked, I would have forgotten about it by now. But "uncomfortable" wasn't a response I expected. And unfortunately, the details above are the only details I know. Ron has no idea why she became uncomfortable.
I have a couple of theories. One is that she thought my little intro speech was over the top, what with the "in many cases, early death" part. The people I know with ME/CFS, the ones I talk to, are already aware of that statistic. They don't want it to be true, but it is, and they want the rest of the world to know about it.
Maybe our erstwhile listener hadn't heard this before. Maybe tossing it out so casually was insensitive.
The other theory is that she prefers to maintain a positive outlook, and she doesn't want songs like mine evoking pity on her behalf. A possibility that never occurred to me until today.
For the most part, feedback on "Everybody Knows About Me" from ME/CFS sufferers has been positive. I know it's impossible to please everyone. Still, it's disconcerting when one of my songs has the opposite of its intended effect. I wish I knew what happened to chase this listener away. For what it's worth, I hope the rest of the Folk Festival treated her better.