Monday, May 2, 2011

Making a disconnection

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.


Anonymous said...

i have heard your song once, and while i applaud your writing it in support of people with me/cfs, as a person who has this illness, the song also made me "uncomfortable." you seem to be asking why this might be, so i am commenting only to share my experience, not to criticize you or your effort.

in my ears, the refrain sounds like people "know" that the person who is actually sick is NOT actually sick. maybe i am misunderstanding it. to my ear, it sounds bitter and angry in a way that doesn't make me feel like sharing it with my friends who do understand, because it might make them feel like i want them to feel guilty of not doing enough for me or having doubts or whatever.

how can i demand that none of my friends doubt my situation when sometimes i have to question it myself? it's a strange illness that manifests in ways that are so hard to comprehend. even the family i live with wonders why i can do something one day but not the next. it's hard. i try not to be bitter or self-pitying or project blame when others don't understand.

i know that other people really like it, and the one other pwc i discussed it with told me i am fortunate to have friends and family who believe in me, because lots of people lose everyone. she felt the song was such a treasure, so meaningful and spoke precisely to her experience. that made me feel extra sad for her, and for anyone who has that kind of loss on top of all the others.

it is a tragic situation. i don't have a good answer for you. i am glad, again, that you care enough to put this song out there. i hope my response is ok with you. if not, it's fine with me if you delete it.

take care.

John Wenger said...

How unfortunate. It is bad enough when you don't think you are getting through in some earnest endeavor, but when you get the opposite effect from the one desired, that can be crushing.

However, this is part of the risk of living, of trying to make a difference. There is always the law of unintended consequences, and your story conveys a very good example it.

You know what you intended, and it is doubtful that anything short of not playing the song could have made a difference, so my advice to you is to live with what happened and chalk it up as part of the price we all pay for engaging in the world. said...

I'm sorry that she was "uncomfortable" and that you didn't have the intended effect in this one life. I think, unfortunately, we are always more prone to hear about negative impacts rather than positive ones. I, for one, am thankful for the way you put yourself out there to spread awareness. Hang in there!

Unknown said...

Yes, that was unfortunate, but it was just an isolated incident. The chances of getting this reaction again are probably slim and none. We have an obligation to get the word out in whatever way we can and I applaud you for that. My dream was 200-300 people demonstrating in front of the CDC; that didn't happen either. I'm not finished planning some way to draw awareness, so hang in there as these are just bumps in the road. Thanks for all you do, Jim

Meg said...

I wouldn't think causing someone to feel "uncomfortable" is necessarily a negative thing. Sometimes uncomfortable precedes facing a problem more directly thus allowing change.

I wouldn't conclude uncomfortable was the final response. Shift happens.

offcenterlarry said...

And that, John, is why I stopped trying to change the world. I agree with your comment. I guess I'm more of a coward than Susan, or at least older and more tired. I write mostly instrumentals nowadays. Keep up the good work, Arizona.

Creek said...

I love Meg's comment. I hope the Unknown Listener is thinking about the song, and about her own discomfort, and processing things. I hope she sees how important it is to raise awareness. If she doesn't like your song's angle, I hope she's inspired to write one of her own. You never know how a person might be motivated to take action!

Anonymous said...

As I said earlier, I thought the intro to “Everyone Knows About Me” was carefully written and tastefully presented. When you do something like you tried there is always the risk of making someone uncomfortable. On the other hand, though, there are a few hundred people who have now heard of the disease, by it's correct name, and a few details. Many (maybe most) of them probably ignored it. But I am certain there were some who listened to the song carefully. And a few of those were inspired to do a little more research into things. So you accomplished what you set out to do.

Sue Jackson said...

Well, with music (or books or other forms of art), the ultimate intent is to make people feel something, right? This person just didn;t feel what you expected her to feel...but your music DID have an impact on her.

I have another theory, in addition to those you mentioned. I have found through my blog that although I am very open about ME/CFS and how it affects me, not everyone is like that. Some people with ME/CFS prefer to keep the details of their illness to themselves and some even pretend to be OK to non-sick friends and family. I know of some blog readers whose families don't even know they have ME/CFS because they fear what their reactions will be. Perhaps she was someone who fell into this sort of category and felt uncomfortable with the openness and honesty of your song. Just a thought...keep singing!!


John Wenger said...

I just thought of another way of expressing what I said above: The perfection of our intentions is not always matched by the perfection of our results.

On the other hand, Meg is right too. Who knows what the final result is of our actions? In fact, I loved all of the comments above. And those comments are also the result of what you are doing.

cinderkeys said...

Thanks for the input, guys. All food for thought. Not knowing what set this particular listener off, there's no real call to action for me. And really, I could only do something if it was my rap at the beginning that made her uncomfortable. I'm not changing the lyrics.

To the anonymous poster from this morning: I saw your comment because I get comments in e-mail, but by the time I went to the site it was gone. I'm guessing you deleted it. If you'd like to repost, please do; it would be a valuable contribution to the discussion.

cinderkeys said...

Sheesh. Almost a year after posting this, I discovered my inbox for spam comments. If anybody at all is reading this, the "anonymous poster from this morning" is (now) actually the first commenter.

Sorry, Anon! It was a good comment, and I didn't delete you.