Thursday, January 27, 2011

Quote of the Week

Oprah is talking to the family of a disabled veteran.  His wife says "I'm angry for the people who have walked away from us."
While we hear this often in the CFS community, we tend to think that it's because CFS is a controversial illness and they don't believe us.  Hearing it in this context tells us that it's because healthy people can't cope with disability -- IT'S NOT YOU!!!!  And it's not because they don't believe you're really sick.
The failing is on THEIR part.  They don't have the emotional wherewithal to see a friend disabled.  They don't realize how much you need friends in your time of need.  They can't step outside themselves enough to do something for someone else. 
That was a big one for me.  So many of my "friends" were only willing to be my friends while I was doing things for them.  But when the tables turned and I was the one who needed help, they ran away.  Stopped returning calls.  Avoided me entirely so they would not hear a request for a little of their time to do the things I couldn't.  My income was zero, yet one said she'd only help me if I paid her $15/hour, which, granted, was less than the $20/hour I'd been quoted by a cleaning service, but still was money that I didn't have; she just didn't get it.
But I found new friends.  The people in support group may not be able to do my housework, either, but they're there with emotional support.  Marlene Dietrich said "it's the friends you can call at 4 AM who really matter" and there's not a one of my fellow patients who would cuss me out for calling at 4 AM, because they know what it's like to be in that place in the middle of the night. 
Since I'm now home 24/7, spending a lot of time on the computer, making e-friends, I have people in my life who actually ARE awake at 4 AM my time -- which is afternoon in Europe and evening in Australia -- people who don't mind IM-ing with me in the middle of my night.  And if I really need to hear a human voice, I can send out an e-mail pinging a group of friends and see who responds "I'm awake".

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