Monday, October 7, 2013

Life: After ED and Other Things

I glance through these posts made by these moms on this online support group I belong to, and I realize that the world of eating disorder treatment has passed me by in a few short years.  They're mentioning different philosophies of treatment, debating them, asking one another questions about them and sometimes getting in some rather spirited debates about them, and I'm often left scratching my head because I have no idea what they're talking about.  I think back to some of the things that were accepted theories about the disease when Kelsey was first diagnosed versus what is being espoused now and think that we lived during the dark ages.  Of course, others who are a generation or two before Kelsey would then have the right to say their experience was positively prehistoric.  It's great news on the one hand because it speaks to time and attention being spent on a condition that kills people, but there is the other side of the coin that leaves people like me bereft because it didn't come fast enough for my loved one.  But, be that as it may, the real point here is I feel sort of "apart" from them.  I lived with this disease for nearly a decade.  Kelsey made the ultimate sacrifice to it.  I know ED.  Whatever you say about it and what causes it, I've been inside the belly of the beast.  I know what it does.  Yet, what I don't know about anymore are the tools in the arsenal to combat it.  And a lot of that is of my own doing.  I made a conscious choice to back away from the disease to an extent.  I've got a job, I've got multiple pets with multiple needs, I live in the city of my dreams near all my favorite sports teams, and I've got this little cottage to tend to.  My cup runneth over.  What do I need with The Beast who stole the life of a wonderful and talented young woman, and still monkeys around with the psyche of her equally wonderful and talented little sister?  Nothing, yet everything.

Because it's been on my mind lately that, try as I might to make it so, there is no life after ED actually.  It was, is and will always be a part of me.  It's an intricate thread that weaves the fabric of my life together.  I think the people who remain actively involved in combating the disease, much like cancer survivors who volunteer in cancer awareness programs later, have figured that out.  You can try and walk away, but it will follow.  So, why not take the experience and use it to help others?

I've kept my toe dangling in the pool by being a part of that group of mothers and being a peer grief counselor with NEDA (not that I've done much good there, but...), but I've never dove all the way in.  Even with the online group, I back away sometimes and refuse to read their posts for a while.  Not sure why, but then I'll go back to reading them every day and actively commenting.  Again, not sure why.  I mean, I realize it's because my strength to face the very familiar concerns they share ebbs and flows, but I'm sure not what triggers that.

The National NEDA Conference is in a few days in Washington DC which is not too far from here.  It's a really quick flight and a do-able drive, so why am I not there?  Well, work, dogs and - yes - sports are all reasons, but as I read a post by a woman from Austin whom I actually know who is getting ready to go, I think that I've been a slacker and turned my back on a cause I should be knee deep into.  If I were passionate enough, I would resolve all those conflicts and go.  Yet, I can't imagine doing it.   I am horribly conflicted at the moment.

I've always said not to commit to volunteering until you're ready, so why do I feel so bad?  I'd like to tell you it's because it's like a scab that itches before it heals.  Maybe I'm getting closer to being ready to dive in.  Maybe.  I want to make sure my motives aren't wrong first.  That I'm doing it because I'm committed to defeating a killer as opposed to wanting recognition and sympathy or trying to achieve a sense of self-importance.  I don't know that it's a bad thing to want people to know Kelsey's story so they don't forget her.  She shouldn't be forgotten.  Her pain and struggles should serve a purpose.  She would want that, I think.  But when I think of it, I become exhausted.  I am tired to the bone just writing this.  No, I don't think I'm there just yet.  They will need to carry on at this year's conference without me.  Maybe next year.  Maybe not.  I'm not sure.

But, as I chew over all of this, I do think maybe this is one of the last few things I have to struggle through before I can say that I'm fully ready to get on with life.  That might surprise you.  Maybe you thought I already was.  Sometimes I think so too.  But, I think there are a few benchmarks I can't hit yet, and maybe embracing the fight against the disease that ripped through our family is one.  Learning to have fun without a secret sense of self-loathing is another.  And finally, forgiving oneself.  That's a big one.  I may act like I've got all that together.  But, not quite.  Not quite.

1 comment:

  1. Cheryl, you have an incredible work ethic, and I think maybe that is a large part of the conflict you are feeling. Everyone deals with their grief differently - for some, it fuels their efforts in organizations to prevent or alleviate the situation or condition that brought about their grief. For others, it takes tremendous amounts of energy and resourcefulness to not be overwhelmed by it. I think you are the latter, but one of your main characteristics is your sense of duty and work ethic, is it compelling you to "do the work"? I don't think you should do this if your motivation is you think "you should". That would be a tremendous disservice to yourself, and the love you have for Kelsey and her love for you. You have suffered. Tremendously. There is a reason soldiers wounded in battle are honorably discharged and sent home. There are many ways to serve. Understand, accept, and RESPECT yourself and your limitations. There are others who love you and need your love, energy, time and talent. Choose your battles. There are many ways to honor Kelsey, choose those that will infuse you with energy rather than tax it, animals, art,...I am sure their are many. With much love, - V.