“It’s a health thing…” (ugh.)

“It’s a health thing…” (ugh.)

The doctor walks into the room and says to the patient, “I have good news and bad news. The good news is: you have CFS, but you’re not gonna die. The bad news is: you have CFS, but you’re not gonna die.”

A fellow patient told me this joke as we put in our time in the infusion suite with Glutathione stuck up our arms, and boy ain’t it the truth! But as Jim Belushi exhorted in About Last Night, “Don’t EVER lose your sense of humor.”

Chronic Fatigue Syndrome. Could we possibly get a more belittling name? Cancer: “Big tumor disease” (as suggested by soccer legend and patient Michelle Akers). Diabetes: “Can’t eat candy disease”. I usually hear: “Oh! I have a toddler. I know exactly you you feel!” U,mmm… no you don’t.

A closer analogy would be having that toddler as a single parent with a nasty and permanent case of the flu. It’s the physical equivalent of living on a bank account that never sees more than $600 at any given time, with no promise of when – or even if – more will come in. And god help you if you let it overdraft.

Myalgic Encephalomyelitis (man that’s a mouthful…)

That’s the clinical name for it. A systemic neuro-immune condition, cause and cure unknown, that impairs mobility and cognition (i.e., can’t move, can’t think – and don’t even get me started on pain; for context, this post took me almost seven hours to write, and it’s the only thing I’ll do today).

CFS/ME is the reason I’m in generally in bed (and likely unconscious) unless you’re seeing me at a film screening or on the Houston Film Critics Society radio show once a month for an hour; it’s why the promoters struggle to read my handwriting on the comment sheet after a screening (sorry!!); it’s why I was in bed for eleven straight days after our HFCS awards show; and it’s why I serve as Secretary on the proviso that someone else is also taking meeting notes as backup.

I make it out to a meal with friends and colleagues about once a month when days are good, and why I’m endlessly grateful for their patience with my short-notice-planning window.

The upside of this condition is it that it reveals who’s truly in your corner, and the people in mine are awesome (Ellen… Slaikeus of every stripe [oh yeah]… Sally… Travis… Kim… Don… Marcia & Rhoda… John & Deb & Keitan & Omar… Andy & Aileen… Joshua… Donna & Dustin…  Celia… Robert… you all rock!).

All Hail Jennifer Brea

Meet our latest champion: patient Jennifer Brea, TED presenter and the filmmaker behind the Sundance-celebrated Unrest.