When people ask why I wrote Everybody Knows About Me, our song about living with undiagnosed ME/CFS, I usually give the short version: I know somebody who has it.
The short story ought to be the whole story. I witnessed the suffering of a person who is very close to me. I saw how the prejudice around his disease compounded his suffering. Of course I would want to get his message out to the world in the best way I knew how.
And I did. It just happened a little more circuitously than that.
Back in 2005, I copyedited a book called From Cotton Fields to Board Rooms. It's a memoir by an African-American, Joseph D. Greene, who grew up in Georgia when blatant and brutal discrimination was taken for granted. Starting out with only $35 and a high school diploma in his pocket, he worked his way up the corporate ladder, earning a bachelor's degree and a master's degree along the way.
With what miniscule free time he had, he gave back to the community. He became the first black person to serve on dozens of governing boards. When stricken with cancer later in life, he became active in fundraising for a cure.
This man's life blew me away. With so little money, so little opportunity, and all of society conspiring to keep him a second-class citizen, he thrived. He made other people's lives better.
And what about me? Here was a cause staring me right in the face: thousands upon thousands of people crushed under the heels of a disease that few believed existed. What had I, the middle-class white girl from the suburbs, contributed to that cause? Nothing at all.
With all the resources and opportunities I had at my disposal, I should be Doing Something. I should found an organization! Form a committee! Raise money to find a cure for chronic fatigue syndrome!
(Back in 2005, I didn't know that there were other, better names for "chronic fatigue syndrome.")
When I tried to think of how I might found my organization or form my committee, I stalled out. I had no clue as to how one accomplished such things. I also couldn't quite see myself as the leader of this little movement. I'm not the kind of person that other people follow.
This rattled around in my head for a few days, and then something else occurred to me. Other CFS organizations already existed. Other fundraising efforts were already underway. It wasn't like I had some brilliant idea for raising money or awareness than they hadn't already thought of.
Finally, the part of me that's smarter than the rest of me spoke up.
You're not the type who does committees, it said. You write songs. Why don't you write a song?
It's funny to think about this now. Today it baffles me that I didn't write "Everybody Knows About Me" years earlier. The inspiration was right there. But the truth is, I wrote it when I did because someone with a greater sense of duty to his fellow humans jolted me out of my complacency.
This is a terrific post, Susan. Everyone is born with different talents, dispositions, drive, and so forth, and few are called to lead great organizations, but everyone has something to contribute, and you made a great contribution with your song. Perhaps it will become the anthem for people with ME/CFS and other such afflictions, the We Shall Overcome of the movement.
I was touched and moved by this post.
Thank You Susan! I know your song will bring awareness to our struggle to find a cause, cure and/or treatment for ME/CFS. I agree, this should be our anthem!
Brilliant post I can so relate to it. I have my crafting & you have your song writing I might I add your a very good song writer (is there a better way to say that?) Your song really moved me & I will be sharing it & showing it to as many people as I can manage!! Thanks again for giving me that extra push I needed to re start my blog x x
John, I couldn't have possibly said that better. You said what I felt and expressed it better than I could have.
We are so grateful to you, Susan.
Thanks so much, guys. It's been amazing to contribute to this. Now we need to figure out how to get the message out in the streets and the boardrooms. :)
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