Tom Hennessy was an ME activist. Though he was desperately sick himself, he fought for over two decades to get people to take myalgic encephalomyelitis seriously, call it by the right name, and fund research for a cure.
I first encountered Tom in 2008. Ron and I had just released a recording of "Everybody Knows About Me," our ME advocacy song, and I wanted advice on how to get it out into the world. I found his site, RESCIND (no longer online), and figured he'd be a good person to contact. He loved the song. He proposed hosting it on RESCIND to raise funds, which we did. He was so passionate and enthusiastic, despite the havoc his disease had wrought on his body, despite his anger at the indifference and scorn leveled at sufferers.
The last time I talked to him was a year ago, via Facebook. I linked him to a song I'd written recently, and he expressed his frustration about not being able to do more for the cause. He'd wanted to put a huge, big-name fundraising/awareness concert together, but he got into a car wreck before plans took off. He still had hope that he could make it happen if a couple of big names did more of the heavy lifting.
Now he's gone. Died by his own hand. It's stupid for me to be surprised, as this is a common cause of death for people with ME, but he seemed like one of those people who would fight forever. Live forever.
I wish his story had a happier ending. RIP, Tom.
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I wanted to close this with a link to a charitable organization that funds ME research or ME awareness. Unfortunately, I don't know where Tom would have wanted the money to go. His obituary page lists two places where memorial contributions can be sent, but one of them is the CAA, and I know for damn sure he wouldn't want you giving them the time of day. If anybody has a better idea, please contact me at susan[at]cinderbridge.com or leave a comment.
