Cameo Ed

March 17-18, 2014

Grief is a funny thing, Ellie.  You can avoid it and it's easy for a while, then all of a sudden it can hit you like a ton of bricks.  I've never experienced this before.  Not really.  It's still so hard to believe that you no longer exist on this Earth.  I looked at your timeline on Facebook at work today, and could have broken into tears.  You were a real, living, fighting, stunningly beautiful girl.  Why, oh why, did you have to die?  I know this sounds a little crazy or whatever...but I hear a small voice say, "It should have been me.  I wish it were me."  And on top of that, your killer makes cameo appearances even now.

He came to me in the dressing room, Ellie.  The same dressing room as before.  (Well, maybe not the exact same room, but the same group of rooms in the same store.)  I'm shocked that he could appear like that, in the aftermath of your death and right when I'm trying to convince the world and myself that I'm all recovered and doing so well.  But yesterday, Ed made me feel awful and embarrassed.  I looked at my body and noticed its shape.  Everything was detestable.  I felt old and wasted.  I felt defeated.  I lost the game long ago, the one I worked so hard before to win.  I looked in the mirror and felt like no one should ever see my body nude -- like I could never even get married because of it.  And this was just yesterday.

I was ashamed, Ellie.  Ashamed because of this strange contrast...  I still remember coming into these dressing rooms with my mother in 2008 when she was visiting me at school and I had to get new clothes because nothing fit anymore.  I remember taking off my shirt and being very aware that my mother was behind me, seeing the bones trying to poke through my skin and feeling who knows what in her heart.  I remember what we bought.  She bought me a dark blue robe, fuschia slippers, and two sets of pajamas -- because I needed them.  There were fleece turquoise pants with blue polka dots and a matching turquoise waffle shirt, as well as a red waffle top with red longjohn pants that had white snowflakes on them.  They were the smallest size, of course.  I was excited to have warm, comfy clothes that fit.  I felt loved, but I felt guilty at the same time.  My mother sacrificed all her emotions -- all her anger, her concern, her helplessness, her sadness, her horror -- to provide for me, her daughter.

I remember crying inside.  Even in my sickness, I still had the Old Me inside that knew how much Ed was not only hurting me, but hurting my mother.  Yet I couldn't wrap my head around the fact that she was still willing to put clothes on my back, even though she was angry with me for my disease and obviously didn't want me to be wearing that size.  I didn't know what to do with this concoction of strange emotions.  I felt lonely, sad, and scared.  But I didn't want to let Ed go, either.  (I'm sure you know how this feels, dear Ellie.)  It's pretty much the most consuming beast imaginable when you're in the midst of it.

Ellie, I don't get it.  I still question every day if I'm overweight and should do something about it.  But I keep striving to be positive, assertive, and forward-moving (away from all things Ed).  The food thing is kind of ambiguous right now...  I'm not exactly healthy, but I'm not in any danger either.  I'm just kind of...getting by, I guess.  But I don't move enough.  Ed still tells me that I'm fat no matter what -- that my body shape is just BIG and unattractive and not fucking good enough.  I should be exercising like mad, every day.  I'm lazy.  I remember the weight that the doctors all said I should be, based on my height, when I was thin.  Obviously, back then they were trying to get me to gain weight, but even at the time I thought the number they told me was too low.  I had never naturally been that weight in all of my adult life.  I do look good at that weight, but I'd have to eat a very precise, rationed amount per day in order to maintain it.  I felt so much pressure and angst when they told me that number -- like it was easier to be underweight than try to be that perfect, ideal number they all mentioned (based off some stupid calculation of pounds per inch!).

Now the scale in my closet is collecting dust.  I'm definitely going to get rid of it because you know what?  It serves me no purpose.  I prefer to assess myself more intuitively -- by how I look and feel, rather than by a number that actually doesn't tell me much of anything about my health.  Ellie, I wish you could have known this for yourself.  And by "known" I mean experienced.  I'm sure your brain knew a lot of truthful information, but unfortunately it all conflicted with Ed's voice.

I don't know how much longer Ed will be making these cameo appearances, but thankfully they are so infrequent that he can't cause much damage these days.  I'm still going to walk on your team in Newton, MA next month and raise money for NEDA!  I'm still going to graduate school this summer.  I'm still hopeful that I will have a successful career in changing the world someday, and that I'll have the privilege of doing it in your honor, beautiful girl!  I'll not let Cameo Ed stop me, even if he tries.

Ellie, you know I could go on forever, but I probably should wrap this entry up.  I miss you, wish I could have been closer to you, and will continue to think of you and pray for your family.  Please be with us all who are grieving...