12:55 p.m. - 02/20/03
a disorder and.> *
Right now, I really need to talk about the fucking eating disorder. Fed. I don't want to appear like I don't understand all this, or like I care about it at all, considering I'm supposed to hate it (and I do), and I don't want to ever be at all triggering, but I also can't keep it in anymore. I'm avoiding sf for reasons unknown (something to do with the fact that everyone there has an eating disorder), and therapy went more to the point of relationshit, although we have discussed the ed more in recent sessions. Anyway. I'm not sure what's going to come out here. Take a deep breath, and if you don't want to read it, don't. I just need to write this part sometimes. I just need this.
I have an eating disorder. That isn't debateable; that isn't something I plan to have change. I'm not sure if I believe being recovered means not having the illness (not to imply that I'm recovered yet). I'm not sure if I go along the lines of "an alcoholic is always an alcoholic" and eating disorders are the same. But I know that right now, it's harder for me to believe I won't have this for the rest of my life. It scares me. I don't want to be acting on it, I don't want to have thoughts about it, I don't want there to be any sign whatsoever that I have an eating disorder, but for the moment at least, I still need to believe I have one. It's the way I know to keep myself feeling safe. It's the way that I keep tabs so that nothing sneaks in. So at the same time I'm doing everything to get rid of this, I need to know it's there.
Partly, too, it's an identity thing. (And God do I hate that.) I'm scared of who I am with this, without it, with it as it truly is as opposed to what people think when they hear. Mistrandy's comments yesterday were really hard. Her assumption that I'm out because I have eating problems (which I guess is what everyone's been told) and her response to my statement that I've been on top of that pretty well lately (completely minimizing that *most* recently, I've been struggling). Her response: "Oh, so you eat pretty normally?" Yes. I do. I haven't been actively bulimic in (one day less than) 18 months. And that's a huge deal. I struggle with restricting off and on, but take less and less time to put myself back on track. And there are longer and longer stretches between those struggles. I eat good meals everyday. I have barely noticeable rituals that I challenge without any explanation. I'm learning to eat from bowls what is meant to be eaten from bowls (and only that.) I'm learning not to worry whether foods touch. You wouldn't notice these things if we had a meal together. You wouldn't know if you saw me that I was hospitalized for an ed. You wouldn't have known if you saw me in the hospital that the ed was why I needed to be there. You wouldn't have known because I am not the fucking prototype and even when I should be grateful for that, I end up feeling pain.
Like, a lot of people with eating disorders have some focus on weight in their recovery. Not just their perception of weight, but the weight itself. They need to gain or they need to lose, or they're doing one and want to do the other. My lowest weight was literally less than five pounds below my set-point. This means that many people gain to a goal weight below my lowest weight. This means that I never looked emaciated, even though I looked sick. This means that I do not fit the stereotype. And I'm eating, too. So do I still have an eating disorder? It's such a fucking misnomer. If we were going to be honest, we'd point out all the issues behind the illness, and name it based on those. My other symptoms- the obsessive schoolworking, the deprivation/need complex that comes up in stores, and so forth- would matter just as much as how I eat my food. And the fact that I'm eating said food would not be reason for people to think I'm not sick, or that I don't have an "eating" disorder. I can say I'm still sick because I have other disorders; at least, that's how I feel. "Well, yes, I can eat now- so I guess the eating disorder is ok- but you know depression, anxiety, identity, et cetera. I'm still having a really hard time." My eating disorder was one hell of a detour. My eating disorder is *still* one part of me. And I don't love it, and I don't need it, and I don't want it, but I can't handle people thinking it's not there just because it's not active. I don't think how able you are to eat is as good a meter of where you're at in recovery as I sometimes thought it was. I think about an early week at Rogers when I was trying to eat normally, and so hugely far away from recovery. I was eating better than I had been - because I didn't want to break the rules and have everyone hate me. That wasn't recovery. Eating is a part of this, it's a huge part of this because you can't be physically safe to work on other things until you're eating, and some of those things can't come up until you quit numbing yourself, but it's not the fucking disease. And I still have this disease, and I don't know why that matters, but it does.
I don't want it to be the only thing that matters about me. I want my recovery from it to matter, but more than that I want my recovery in general to matter, and even more I want to matter *myself.* I hate that my Gothic teacher (who granted, is a little loopy) thinks she knows me because she experienced her daughter's eating disorder. I was flabbergasted; I wanted to say, "Yeah. I've experienced one, too." What? Do people think they understand this better than me simply because they've gone through it (which she hasn't even done- it's a different experience, though terribly painful as well, from the outside.) I'm going through this, too. I may be 17 and not quite well, but I still understand my illness. I may be sick and out of school, but that doesn't mean I don't know more about my recovery than anyone else will ever know. There it is. Damnit, there's the switch, the catch in my chest, the sting behind my eyes. Don't tell me who I am. Don't tell me my experience. Don't take away what I've really been through and replace it with your hackneyed interpretations. Don't relate to me solely because of a shared diagnosis. Don't assume you've gone through the same thing. Don't assume I don't know better than what you attribute to me. What would you say if you saw me? With my three meals a day, my snacks, (I had fucking cake last night, and I'm going to have it again on my birthday, damnit) my feelings, my writing, my interaction with others. What would you say? Would I still be the girl with the eating disorder? I need to still be a girl with an eating disorder. I need that to be a leaf on a twig on a branch on a trunk on the strong roots of an old, strong tree. I need you to not forget, not forget, not forget, not erase where I've been. But I need it to not be everything. Why can't you get to know all of my complexity? Why did you ask why I'm out instead of what I'm like? Why are people more willing to read up on my illness (curiosity, Mary; we're just curious) than they are to listen regarding my life? And why am I playing into that, doing what they do, telling the doctor I don't want to know how I'm relational because I'm sure it's something evil, bad?
Am I doing just what others do? Am I giving myself that little, knowing myself in such a small way? Not anymore, no, I won't stand for it. I want new. I want new. I want new, I want me. I will do better than has been done. I will learn who I am and express it as fully. I received this absolutely amazing mix tape from Sarah-delancey that sounds like journeying. It sounds like ten cities and forty buroughs at once, and within them all there's this thread of the traveler, and I listen to her, and there's nothing you could pin down with a label. Nothing you could say, "oh, she likes this." The only possible response is, "God, I want to know this girl, and how is it possible I'm starting to?" It's feeling blessed. That's the only possible response. Remarkable awe. And I think that I want my mix tapes to be like that someday, to be complex creations that represent fully who I am, but I can't make them now. I'm fit tightly into genres and I keep myself there. I keep myself inside that way. I share songs as offerings, other people's words. I don't use them as my own. I don't use tapes as tickets. I just don't want to be giving myself the same raw deal that I've been given by so many. This woman doesn't even know me! This woman doesn't even know me, but she wants to make it clear that I can e-mail her or call or anything if I need to talk. And I'm like- need to talk? I have a therapist who'll see me at a second's notice, I have friends who rebuild the universe daily, I have the number for a paiger that never goes unanswered, I have fucking RED- why do you think I need you to survive? Why do you think that? I know you're well-intentioned. You want to help me. But how do you know I need helping? The truth is, I could very well help you. The truth is, just who I am could be enough to floor you, to push you to transform. I could challenge and capture and enlighten you. I could be that powerful.
Don't assume, please God. Don't tell me who I am and what I Need. I've had that my whole life. I've had that my whole life, and I don't want it anymore. I need to know myself (yes, even that one point) so that I can tell them what I need. So that, on the matter of my life, no voice means more than mine. I spent all of my school-going life trying to be saved by a teacher, and here is one ready and willing, and I'm bawling because I don't want her. I finally want me, and they're still trying in their hair-brained ways to pick me up. I've dusted myself off; I've started all over again, and here are these people ready to help me with things I fight daily all on my own. Ready to give me a gift they're sure I don't already know. It's offensive to me. It's so wrong. Why do you assume my life isn't filled to the brim with beauty? Why do you assume that I'm not better, fighting this, than most people are without the fight? Why do you assume I can't take care of myself just because no one taught me for those first few years?
I love me. I love me. And I'm still sick, and you don't understand that. I stay nourished, and I like chocolate, and I have friends. I have an eating disorder. I eat three good meals a day, I can't choose a flavor for my birthday cake, and I have an eating disorder. I love my family, honestly, I have friends like stars and sun and moon and earth and water in my world. I read amazing books and I have a clear voice in my poems, and there's this eating disorder I battle. I like sweet foods and fruits and carbs and I eat protein and fats; I eat nutritious and delicious and I have an eating disorder! Ok? I fly to New York to see my plays produced, I no longer want to shadow my sister, I might swim the English channel before stopping in at college, and I have an eating disorder. You know nothing about me when you know just that. When you know just that, "eating disorder." You know nothing. You don't know what I go through, where I've been, how I love, or who. You don't know what I do with my life, what voices I fight with, which ones I cultivate. You don't know who I am. I barely know who I am, so goodness knows you don't. But I want you too. I want to know myself, and I want to share her, so you've got to get past this, "I understand" bullshit. You don't understand if we've never said hello. You don't understand if you've never been sick, or have been, or are, or have gone through it with someone else. Sure, it may connect us. Sure, we may have common experiences, common joy and pain. But you don't know me until you know me; there aren't short-cuts. And this bastard illness is not me. Please don't say I can talk to you anytime when you have know idea what syntax and semantics I might use. Please don't say you're always here, when you don't know where I am. Please don't say you understand, when you don't, you don't, you don't. I have to understand. First. I have to be the one to say it all.
Once, my guidance counselor/ musical director drove me and two friends home from a show in the city, and she said that the reason she didn't like edgy/controversial movies was because she went into those dark places every day with her job. This is a woman who lives in a brightly lit office, with motivational posters, multi-colored post-its, and self-help books abound. This is a woman who has never seen gray, let alone black. And she's telling me that I'm too young to see what I have seen. She's telling me she doesn't want to see any more pain than what she already does, after months of ignoring my attempt to talk with her. She says, "I go into those dark places everyday." But she doesn't. And she certainly doesn't know my dark places, or the light I've found to redecorate them by. She certainly doesn't understand me, so she doesn't get to say. She doesn't get to say what it's appropriate for me to view, to think, to read. She doesn't get to choose how I'll be before learning who I am. Or after. Don't comment until I've introduced you to myself. It will take months. It will take time. I will love you before you know me, probably. I want to know you'll love me after. And the longer I'm at this, the more I trust in that. The more it's true.
You're wrong. I *do* have an eating disorder, and I eat three meals a day. I do have an eating disorder and I have more stuffed animals than there are people in D!@#$%^ (by far.) I have an eating disorder and a recovery. I have an eating disorder and a home several state lines away. I have a family spread out across the states, with a small hub in NY. And I have an eating disorder. I like gummy bears and Starbursts and feather boas, and I have an eating disorder. I wear combat boots to stand tall about my problems, and I love being 5'2" - 5'3", and I have an eating disorder. I wear kneesocks, and I listen to music that changes me for the better. I make up songs just to hear my voice, I write poems to express the acids in my stomach (and the softness there.) I have glasses and dark hair and a penchant for silliness. I'm acutely sensitive to what others need (most often), and I meet my own needs, too. I have an eating disorder, and I'm like no one you've ever met. Not even you. I'm like me. I'm still waiting to meet me fully.
So, quit this. Quit boxing me in, even to save me. Quit being my hero - because I do it so much better my own way. Please get to know me. Please write me a note, send me an e-mail, give me a chance. Please don't think I don't appreciate your intentions, but understand I don't need help. I don't need help when I don't ask for it from people I don't know. I don't need help to put food in my mouth or to express my feelings or to stay safe. I need help explaining to all the would be well-wishers out there why their good deeds fall flat or sting me to the point I write this. I need help explaining how I have the same diagnosis as half the world, and I hate that diagnosis, and I love so many of the people with it, and I'm not them. I'm not them. I'm me. And you need to know me, if you want to know me. You need to know *me.*
It's no easy task. It's not quickly accomplished. I'm only sort-of an open book. I take getting used to. Get used to the feel of me, the way I weave in and out, the subtleties and footnotes and cute illustrations. It's going to take effort, but if you want to know me, I will let you. I want to know me, too.
But first, you have to quit pretending you already do. First, I need to apologize myself for thinking I know what the secret is, or what it will mean. I need to pray within myself that I may quit thinking I understand already. I need you to quit thinking you understand. I love that you care; I really do. I love when strangers seek me out. But do it because you want to know me, because *I* intrigue you. Not because you can help me. I don't want to be saved. I'm too thoroughly occupied in saving *myself.* I'm not doing it on my own. I have huge amounts of help. Help who know me. Help who know how to listen to me. Help who trust me to say what I need. It's not to say that you'll never be one of them, but don't try and jump to that. Don't walk up to me on the street, and say, "Hi, how about I feed you lunch. Here comes the airplane..." Say, "Who are you, mysterious girl? May I know you one step closer, bit by bit?" Say, "Let me tell you of myself, while you fill in the margins with the story you have known."
Say, let's be friends slowly- illness understood, aside. The way it's supposed to be. Let's be what we'll be based on who we are. Which means I need to know you gently. I need to unravel you and figure out where I fit. Yes. Say that for once.
chord
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