Wednesday, June 6, 2012

The Left Behind

Patients with any chronic illness often find themselves being left behind by the world, watching their contemporaries go on to have careers and families and financial successes, while the patient goes nowhere fast.  You feel you have nothing to talk about when friends call, because while they've been vacationing in the tropics, your big "trip" for the past year was that visit to your doctor cross-town.  Hardly a fascinating subject of discussion.
New York Times columnist and author of Bad Religion Ross Douthat sums up the current attitude, "If you fail to master everyday events, and fall into struggles and suffering, it's a sign that you just haven't prayed hard enough, or trusted faithfully enough, or thought big enough... The fault where any evil is concerned, in other words, lies not with God, the devil, or the fallen-ness of creation but with you -- so stop whining about your troubles, get down on your knees, and do something about it!"
Douthat acknowledges "Such a message may sound cruel."  And it does -- because we have millions of patients (and their friends and families) around the world praying for a cure, and in over a quarter century, not a one of those prayers has been answered.  They've gone up to Jesus, God, Allah, Buddha, and deities whose names I don't even know, so it can't be that we're praying to the wrong divine entity, because we have people praying to all of them. 
A professional acquaintance worked at the Vatican, and, at my request, added "a cure for CFS" to the prayer list for her office.  An old friend is a nun, and added "a cure for CFS" to her convent's daily prayer list.  When John Paul II died and needed miracles for canonization, some CFS patients started to pray to him for our miracle cure.
If even someone as close to God as those three cannot get His attention to get us our cure, then don't blame yourself for not praying hard enough.  Surely if the answer to our problems were praying hard, we'd have gotten somewhere by now with that kind of firepower!
It's one of those guilt trips that people like to send you on so that they won't have to acknowledge "there but for the grace of God go I." 
The simple fact is that people of all walks of life, all belief systems, all levels of religious belief from atheist to ministers, have come down with this disease.  It's not a lifestyle disease like AIDS -- I lived a very healthy lifestyle; the only thing I did wrong was to leave my germ-free apartment during flu season and cross paths with the wrong stranger.  It had to be a stranger who infected me, because no one else I knew had CFS.  Perhaps that man who sneezed on the bus, perhaps the woman who coughed as I passed her on the sidewalk?  Washing your hands constantly won't help if you inhale an airborne germ.
A friend within the CFS community who has heard quite a bit about the 30 years of struggles I've had in my life (even before being struck by CFS) has suggested that I title my autobiography "Wednesday's Child is Full of Woe."  Going to church every Sunday did nothing to insulate me from troubles.  Leaving the church didn't make things any worse (in fact, it made things better, because I wasn't coming home from Sunday services with the latest germ that would make me miss work later in the week).
Next time someone tells you to just "pray harder", look them right in the eye and suggest that since you already pray quite hard enough, they should pray harder for you, and for the millions of other patients around the world.  When you see them again, tell them that there is still no cure for CFS, and accuse them of not praying hard enough.
Then ask them for a donation to your favorite CFS researcher.
To borrow a line from a religious writer, "sometimes bad things happen to good people."  I've started to look at it as my poor health being God's test of those around me.  One friend who decks herself out in every piece of What Would Jesus Do? paraphernalia available to trumpet her Christianity has proven herself to be completely unwilling to lift a finger to do anything hands-on to help me.  When she gets to the Pearly Gates, God's not going to care about the T-shirt; she'll need to defend her constant excuses to not perform charitable acts to help the disabled. 
It's been the non-Christians who have been most likely to step up and help: the Jewish friend who made phone calls trying to get volunteers to help me in a crisis, the Pagan and Wiccan friends who've phoned and written to keep my spirits up, the non-believer who sent me books and videos to keep me entertained when I was bedridden...  
Those are the people who've passed the test.  Those who think tossing a casual "I'll pray for you" over their shoulder as they run off to do something more fun than tend to my needs have failed.

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