Almost two years ago I sat huddled in a corner of The Engineer’s Club in Baltimore. My companion and I were catching up and she asked how I was doing. I took a deep breath and I told her.
Not well. It’s been really hard. My energy levels are so unpredictable. Some days aren’t so bad, others are horrible and I can’t get off the couch to walk my dog. I made a lot of plans and concessions to come to this event, and I know it’s going to knock me out for the next week before I can drive back home. I’m just exhausted all the time.
She told me that she knew someone else who shared my story and that she was helping her make a movie about it. That woman’s name is Jennifer Brea, and her movie “Unrest” has been shown in theaters around the US and is now available for streaming. Tonight was a one night only showing in Ithaca, with a post-film talk with two local researchers who are tackling the mysteries of Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome.
As someone who has ME/CFS, the movie was at times deeply, devastatingly sad and familiar, and at others times affirming. A dear friend attended with me and held my hand while I used up several tissues. At other moments I just nodded my head emphatically.
During the talk Cornell University professor Maureen Hanson and Ithaca College professor Betsy Keller (both part of the Cornell University Center for Enervating Neuroimmune Disease (ENID)) talked about the defining factor in ME/CFS diagnosis: post-exertional malaise. That’s a fancy phrase for “if I do something now I’ll pay for it later.”
Want to walk around the neighborhood for Porchfest? Maybe. At least take a folding stool, a liter of water, sunglasses, a hat, emergency medications and if you’re having a decent day you can probably make it work. But you’ll pay for it later. Know that the next day is a write-off and hope it isn’t for more days than that. At least that’s my experience. And I’m luckier than some, because some years I can go to Porchfest.
If you know anyone with ME/CFS, I *highly* recommend that you watch this film. If you’re just curious about a mysterious illness that affects over 1 million people in the US but has no clear cause and no cure, watch it.