Awareness

Monday Night:  I am sitting here alone having just clocked out after a twelve hour plus day trying to sort through a brand new task that is turning out to be very intricate and sort of scary since I'm the only breadwinner of my scattered family and I'm only vaguely confident - no, not even - that I am working in the right direction.  And, I've got two days to wrap up what I'm working on and then four more reports just about like it.  Good thing I have no life outside these walls right now.  Speaking of which, snow is falling thickly outside.  I need to layer up one more time to take Cheyenne out for a final walk and hope I can even see where we're going.  I like the snow, but it's more fun to only have to walk the dog three times a day in it.  When we trudge out there in a few minutes, that'll make five, which I guess is symmetry because five inches of snow has fallen since about noon.  She picked a hell of a day to get restless on me.  For her part, she's loving the weather.  Something in her Husky DNA seems to be telling her this is her element.  Well, she could live in an igloo out there if it would make her happy if only I had a fence.  So, at some point soon I need to push forward on that little task - if some contractor can find the ground somewhere underneath all that snow.  Overwhelmed?  Yeah, I would say so - because that's just the tip of the snowy iceberg.  Yet, I spent much of today pondering on what this week is in the larger worldview.  No, not President's Day.  Well, yes, it is that, but this is National Eating Disorder Awareness Week.  I am oh so aware, as I sit here in my snowy little house, of ED.  It occurs to me that, whether this house is haunted or not (that's another story for another time), our family continues to be haunted by The Beast.  The very fact that I've temporarily ripped our family apart is not indirectly related to Kelsey's eating disorder.

ED is a disease that every family member is impacted by.  I suppose that is true of any life altering illness, but I tend to believe the damage runs a bit deeper and longer with ED.  I think of Marissa and all that she endured, in large part because she was growing up in the shadow of Kelsey's struggles.  I've seen that repeat itself in other families - the other siblings, particularly younger ones, really suffer because of the enormity of battling the disease.  Our marriage was strained to the breaking point early on until we finally got it in gear and learned how to conduct ourselves a bit better.  Those bonds risked breaking again in the wake of Kelsey's death and my husband's walking away from his job, enveloped in his grief.  Now, at least briefly, we live apart because I cannot face living in the house where the drama played out.   But all that is minor in comparison to the fact that we lost our first born daughter.  We live with that on a daily basis.  We always will.  We will always feel the hole The Beast made right down the center of our lives.

And that's just us.  What about our lost daughter?  What about what she went through?  I have her journals. They are packed carefully and stored in the attic.  I can't quite bring myself to read them yet - not since preparing for her funeral have I scanned through them.  But, I did then, and what I was struck with was how she suffered.  Not physically - we could see that clearly enough - but mentally.  That's why I can't read them now.  Not because I'll see the teenage rants and rages against us as parents.  There would be that in spades, I'm sure.  Try reading any teenager's journals.  It's the conflict she had within herself about the disease that engulfed her and imagining a person you love living like that.  The world has lost her art, her potential, her voice that she used to try and reach out to other individuals suffering as she did.  There are no winners here.  Other than The Beast, I guess.

So, here we are entering into a week designed to increase awareness about this awful disease.  I looked on the website designed to advertise volunteer opportunities in the greater Pittsburgh area.  I also looked on the NEDA site for events in the area.  Nothing.  I know people in the city grapple with their own ED beast.  Do they have resources?  Do they feel, like we did originally, very, very alone?  I'm not sure.  I confess I'm conflicted about trying to find out.  I've struggled all along with being active volunteering with the disease.  I lived with it for so long, it's sometimes painful to remain involved with it.  But, then at other times, I feel that I HAVE to work to eradicate it, and I feel a burning passion to DO SOMETHING.  I don't know if this normal or not, this conflict.  Is any of what we've gone through over the last year and a half normal?

But, in Austin, at least, AFED will carry on with their mission.  They will close the week out with the You Are Beautiful II Silent Art Auction.  Once again, some of our friends have donated art.  Some of Kelsey's work will be there.  This way she gets to live on and she gets to help others the way I know she tried to.  For my readers who are there, go and support their efforts.  Come home with some beautiful art, and be aware of this disease, because it is real.  I am aware of it every damn day.