Oh I wanted to write a long post
One about the myth of the redemptive power of suffering but I just got back from a morning meeting and have to leave in twenty minutes for another meeting.
Julia and I talk some about the work she does for the PKD Foundation, particularly with other parents facing a new diagnosis. She’s found a way to make meaning of her family’s challenges but you know, I get the feeling she’d give up all that meaning in a millisecond if it could make her kids healthy. But then maybe she ought to quit being so committed to serving the PKD community because that’s so much focus! So much attention to something negative! Why dwell on the bad things? Move on, Julia!
Why do we ignore the fact that the most activist good comes from people obsessed? (That MLK! That Ghandi! So single-minded! Sheesh!)We less obsessed people who show up for the rallies, write our letters to the editor — we’re riding on their coattails. (Do you think I would have testified if Marley hadn’t been keeping track of the legislation?)
I don’t know. It’s running through my head from some of yesterday’s comments and then hearing Terri Gross interview Bart Ehrman yesterday about his book, God’s Problem: How the Bible Fails to Answer Our Most Important Question — Why We Suffer. It’s worth listening to if you have the time.
But instead of wandering around on this topic for hours, I have to go eat lunch and head back out into the snow.
I know…right?
Why, I SHOULD just stop the negativity right here because we all know if we think about something too hard, it just makes it worse!
(By the way: I would give it all (the warm fuzzy feeling I get from advocacy) up in a millisecond if they could be healthy.)
I burned out on the kidney disease community advocacy groups… about… three years into dialysis (2006). I was very active and involved (including speaking on the Hill several times) for years, but it just takes a toll. MY CKD has just been part of my life for… most of my life… but the advocacy side of things becomes really involved as do the emotions (for others) when I struggled with my own.
I had my transplant in June 2007 and even though my health (non-kidney related) has still been whacked since, I’m hoping I’ll be able to get back to being able to at least be a part of a few groups who have invited me. I still visit my old dialysis center (heck, when you spend nearly 4 years in a place like that it sorta feels like home in a weird way) to visit, but that’s about all I do.
Dawn, this isn’t necessarily related to this post, but I just wanted to tell you how much your voice means to me. One of the few heartening parts of this arduous journey (as a birthparent) has been observing an increasing number of adoptive parents taking the risk of speaking to unpopular issues among their peers. Seriously, that has literally made me sigh out loud at times with visceral relief, though I know there is an enormous amount left to do.
The fact that you “get” that you, as an adoptive parent, hold the cultural megaphone at this point in history is huge. The fact that you choose to hold that megaphone up to collectively-squelched voices is admirable and, actually, quite moving.
And, yes, the activism thing. It’s not a barrel of laughs to look deeply at things, is it? More comforting not to see the cracks in the foundation. Burnout is high and, I think, necessary. Necessary to pass the torches along at some point. For now, though, I deeply appreciate what you have done in moving things forward.