Sunday, May 24, 2009

Sunday, a Better Day.

Today has been much better than yesterday. I don't really know why, I just feel better mentally for some reason. I won't question it though.

I did something today, something I wouldn't ever have had the courage to do months ago. I was at the grocery store, going to pick up some things. On my way in, a girl was walking out. She was probably about my size, not sick looking but very, very thin - thin enough to be considered anorexic. A guy working there started yelling "Lynne! Lynne! Somebody thinner than me! Somebody thinner than me!" The girl rushed her way out. I walked up to him and said "Excuse me, I know I don't know you - but if that girl really does have a problem, saying things like to her could be hurtful and make it worse." He said to me "Oh but I know her, she's my friend." I said "That's why I am telling you, she could very well have a problem with eating, and teasing her doesn't help. Look, I have an eating disorder. And I know that when my friends say things like that, it really doesn't help and it makes me feel worse." He kept trying to say it was okay, "Because if she had a problem, she would tell me." and I just told him again "I understand, but she might actually have a real problem, whether you know it or not, and saying that kind of stuff really is not helpful." I find myself feeling guilty now for speaking to him, wondering if I just embarrassed the hell out of myself. I get these moments of boldness and I almost always regret them. Someone else who works at the store that I'm friends with came up to me and actually said it was good of me to do that. So that makes me feel a little bit better, but not really enough to dissuade my feelings of "HolycrapwhydidIdothat?" panic.

I've calmed down a bit since then and am generally OK with it now. I have a rather lengthy history of these bold moments where I speak far too much for my own good. I mean it when I say I have a big mouth.

Anyways. Onto some eats! I tried a new oats idea this morning. Ladies and gentleman, I give you:

Peanut Butter Cookie oat bran. In ze bowl: Oat bran, Vanilla Chai protein shake, 2TBS raisins cooked in, topped with a few chopped almonds, flaked coconut, and a crumbled PB Cookie Larabar. Yes, I made this bowl sans-banana! Amazing. There is a noticable difference without the banana in my oats - much more creamy/pudding like consistency. But mixed with the crumbly bar and coconut flakes, quite nice. I admit, I was afraid of not having actual peanut butter in my breakfast (only god knows why) I think my ED was making me nervous, knowing how many calories it was and I feared I wouldn't feel "satisfied" without real PB. Fear proven unneccessary. It was really, really good and I think I may have to do mix bar+cereal/oats more often.
I wil admit though, I still had a banana with my AM snack, fage+nana+WCW+honey. But it was somewhere different! Does anyone else feel like there are certain foods they have to have every day? I do. Its rather frustrating at times. I suppose one of these days I'll be able to get past it. But certain foods, like bananas, are foods I like but have had immense fear of for a long time. My way of breaking the fear is to have it every damn day until I'm not afraid. No lie - I ate a protein-powdered-up muesli mix, PBJ sammies and tuna casserole every day for breakfast, lunch and dinner for MONTHS. The only things I ever changed were flavor granola bars, jams/PB, and where I put different yogurt/oat toppings. Every day from like sometime in September or October (when I started switching to more solid foods over shakes) through I think January. A few foods I am not afraid of not having every day, others...still feel like there is too much likelihood that I will start refusing to eat again (a la bananas)

I did something a bit different for lunch.

That there is a hummus-sliced avocado-roasted red pepper sandwich. I also had some veggies with cottage cheese and an apple with PB. Yummy. I've been afraid of having avocado and hummus together for a long time. I think I became afraid of a lot of foods or food combinations that I had while I was inpatient, just because I associated it with the memories of being there and struggling so much. When I was in Renfrew, the hummus and avocado sammie was a popular one to give us vegheads. I was actually vegan in high school, and was up until I had to start refeeding again in 2006. Then I was just vegetarian. Vegetarianism was not permitted in my first inpatient of 2008, LIJ, so when they tranferred me to Cornell three weeks later, they essentially said "When we decide you are stable enough to get partial trays, you can't be vegetarian because you weren't in LIJ." BS I know. But whatever. Have I ever told y'all about Cornell? Oh...man. When I think about that place, while I met some great people there, it sends chills down my spine. Just the fact that it all became so routine frightens me.

I remember when I was transferring, they had been sent my medical records. But they ran their own blood tests on me. I was .2 under their minimum iron levels. They sent me to White Plains Hospital for a blood transfusion. I flipped shit in the hallway. There was no way in hell I was doing it. But my parents were legally bound to bring me there. If I went home instead of checking into Cornell, and LIJ was going to call to see if I made it, they could be sued. So I went to WPH, for the sake of my parents. Not before cursing every doctor on the floor and screaming "You assholes coordinated this with LIJ four fucking hours ago. My iron level couldn't have dropped below an acceptable amount in that span of time. Fucking jerks!" Meanwhile some man tried to tell me I was a very, very sick girl and that if I didn't calm down, I'd have a heart attack.
I still have small scars on my arms from being in the emergency room of that hospital. It was under construction, and very cold. Despite being inpatient for three weeks, I had gained MAYBE one pound total. My veins were shot to hell from being malnourished and underweight, and probably worsened by the fact that I smoked, did drugs, and hadn't eaten anything since my breakfast at the old IP that morning. This young guy kept sticking me the needles, prepping me for the transfusion. Over and over and he couldn't find a vein. Finally someone brought me a hot-wrap. This woman was most sympathetic to me, kept saying they had to keep me warm. She's also the woman who decided to run her own blood test first, and determined that Cornell had made an error and I did not infact need a blood tranfusion. Enter my happy dance. I actually hugged her.
So I got checked in. Strip down. Body check. Mark off the tattoos and scars on the chart. Explain. Then I was given a hat. Not the kind you wear on your head. The kind for measuring your urine. Yes. Every time I peed, I had to measure it. Everytime I had a BM, I had to "gauge" the size. The showers were open, public showers. We had clear plastic curtains to "guard" us. A woman sat in the shower room to supervise. I didn't get the unsupervised shower privelege until the fifth or sixth week I was there. I was placed on bed rest. Even sitting on the floor of our room, working on a puzzle, got me and another girl in trouble. For the first day, I was given 175mL Ensure Plus, and a single 4oz juice cup six times a day. I still remember sitting at that tiny round table, every day, swishing and swirling that same Vanilla Ensure around in my clear plastic cup. Eventually, there was so much Ensure in the cup, I couldn't swish it around anymore. I remember new patients coming in and staring at my massive glasses of Ensure, and the trays of food I had to eat.
Anyways. They had to bump my ensures up to 275 by the end of the first week (they did 25mL bumps)because I kept losing weight. The main doctor took me aside on my third or fourth day and told me I was going to end institutionalized in a state hospital for 2-5 years if I didn't get my act together and prove I could care for myself. My response "How the hell do you figure this weight loss is my fault? I was eating 3600 calories a day in LIJ. I told you that day one, when I came here. You cut those calories in half. What did you expect? Don't you dare threaten me because of your own mistakes."
Did I mention I have a big mouth?
After two weeks,maybe three, I was permitted to have three slices of toast, total, througout the day. Then after another week or so, I got bumped to partial trays. The deal with partials was this: You got your Ensure Plus and juice, drank those up first because they contained all the configured calories you needed. Then you got called to the kitchen window and picked up a partial-entree to help reintroduce you to food. So if a full breakfast was cereal, milk, fruit, toast, butter, and a yogurt - you'd get maybe cereal, milk, and fruit. To eat on top of your Ensures. By this time, my Ensures were in the 350mL range. I topped out at 425mL Ensure. The nutritionist there told me she "had never seen a female inpatient need so many calories to gain." They wanted to continue increasing my calories since I wasn't gaining appropraitely, but the nutritionist felt it was physically impossible to cram anymore Ensure into me without having me feel too sick to eat my partial trays. After I moved on to full trays (which meant I only had to drink the Ensure 3X a day!yay!) they resorted to boosting two of my shakes to 545mL every few days when I stopped gaining. They also restricted my hard-earned outdoors/cigarette privelege. I was only on full trays of food for four days (out of a nine-week stay!) before I got sent home. First thing I did was take a shower in my own bathroom, shave, and drive my car.

The strangest thing that happened there was a conversation I had with one of the other inpatients, R. R was a wee bit too medicated, I'll admit. But one afternoon, when she was on constant observation, I sat in the hall talking to her while her "watchman" was sitting on one of the sofas across from her door. She got up out of her bed, came to the doorway, sat across from me on the floor and took my face in her hands. She said to me "Tori, you are healer. The universe brought you to Long Island Jewish, and to Cornell, to help us all. You are a healer and you were meant to save us."

As if that wasn't freaky enough, every girl from both inpatients that I have been able to remain in good contact with has stayed strong in their recovery and they are all doing beautifully, graduating high school, going off to brilliant colleges.

I have absolutely no idea why I just told you all of this. I guess part of me still feels dehumanized by the experiences I had at Cornell. The employees used to call our meal times "feedings" as if we were cattle. They kept us like that all day too, stuck in between the two small pen-sizes spaces of den and group room all day. Constantly watched, constantly accused. Though I suppose I don't blame them for not trusting an 80-some odd pound anorexic. When I dropped to my lowest in June, I had to cry, beg and plead my father not to physically force me back there. My insurance refused it anyways. :sigh:

Sometimes I wonder if these memories will always haunt me. Like how when I was in LIJ, I was given a heart monitor. When they took it away to give to another patient, I thought it meant I was getting better (even though I hadn't gain a single pound). It took me MONTHS to realize, they gave away my heart monitor because I was the oldest patient on the unit and the least likely to recover. They gave the thing that saved my life when I was 16 away to someone else, because my life at 19 was considered expendable and less worthy of attempting to save than someone who was younger and more apt to make a full turn around. Making this connection hurt deeply, but more than that - it angered me. I am more determined now than ever to do something to fix our health care system. I don't quite have it all figured out yet, but I am going to find a way.

Ok y'all. I need to sleep. Enough of my babbling and ranting. Hope everyone is enjoying their holiday weekend!

6 comments:

  1. I totally understand how you have to have the same certain foods everyday.
    or certain things with certain other things.
    I have had the exact same breakfast for over a year. I may have swictched the flavor of cereal/granola . or soygurt, but always the exact same.
    Lunch. ALWAYS soup or hummus and veggies.
    Dinner. ALWAYS a salad with hummus (or soup)
    I am trying to break away from this.
    or add or switch it up with things..
    How do you do it!!?? I need more strength.. courage.. like you

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  2. WOW! I cannot express in words how much I commend you for your experiences and sharing little tidbits of your life story with us. I think that you have come so far from where you were and have proved so many of those ignorant fucks (pardon the language) wrong. I cannot even imagine what treatment was like but your words provide a little insight into it all. Despite the severity of your sickness, NO ONE deserves to be treated like an animal. But if anything, just think about all the things that it taught you about yourself and about other people.

    Onto brighter things: food! I'm so glad you have been feeling better today and challenged yourself with some new eats, especially those that render fear. I love avocado and hummus sammies...it's the perfect combo of healthy and creamy. Oh and those oats look incredible! I love the bar crumbling on oats and yogurt! It always adds that little extra somethin' somethin'. And don't even worry about the preoccupation with having certain foods every day. I think every person has something like that. I know that I almost always have to have yogurt and berries for breakfast either with oats or some sort of muffin, bagel, or toast.

    Last but not least, I am so incredibly glad that my words from the other day cheered you up. It means a lot to me that what I say and thank actually has some sort of impact. :) And of course you deserved that award. In order to pass it on, just copy and paste the pic and then link the names of those 7 bloggers you want to share it with. In order to link a blogger, write the name in your post and then highlight the whole think, click the little green html linkage button, and then link it by entering the web address. Hope that helps!

    p.s. I totally have a big mouth too. I think what you did today was awesome and you should be proud instead of regretful. I know that sometimes I def get that heart-racing, uh-oh feeling after speaking up about something with being asked to do so, but in the end I took a stance on something I believe in. In this case, you just might have helped out someone who doesnt have the strength from within to speak out. Thanks to you, however, you just gave her a voice. Don't worry babe, you did something good.

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  3. OMG your IP experiences sound so so horrible. I can't believe I made such a big deal about being on observation after meals (meaning, you had to stay w/in the sight of a counselor, and you had to sing or talk to someone thru the door when you went to the bathroom for like 2h after meals, 1h after snacks. The only time we were EVER supplemented was if we refused to finish our meal-- their philosophy was that weight gain needed to be achieved thru FOOD, not supplements, and that even if it took longer (a lot longer) to gain the weight, we would have more time to adjust and it wouldn't be so traumatic and we'd be less likely to lose it all as soon as we left. There were only 5 other girls there, and it was in a home, not a hospital ward. Typing all that out, I guess my experience wasn't really all that bad, but it was terrible enough that it's motivation NOT to relapse and end up in that situation again.

    I've been reading your blog for a while and I think you are incredibly strong for having made all the progress you have, and for doing this ON YOUR OWN TERMS. You are a healer, I have seen how your comments have so helped others. Now the challenge is to heal yourself. You've got this. Take care.

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  4. First of all: I am SO PROUD Of you for speaking your mind to that nimwit employee! I'm sure he didn't mean to hurt anyone with his words, he is just ignorant and ill-informed, so you did him and the rest of the world a favor by telling him not to say those things! That was the right thing to do!!

    Secondly:

    DAMN! Your Cornell experience...wow. Takes my breath away, it sounds like HELL! It sounds like prison, at least. Not nurturing in the least, not even well orchestrated! So glad you got outta there ;)

    Your story will hopefully be used to reform shitty treatment centers as well as insurance stuff you wrote that email about a few days ago!

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  5. Wow, I really don't know what to say. I've been reading your blog for a long time and find it so insightful, motivating, refreshing... the list goes on. You absolutely did the right thing by speaking your mind to the shop worker. That was such a brave thing to do. And your IP experiences are shocking. I can somewhat relate: My recent admission also felt like a prison - under supervision we could not even use the toilet without being watched. But my experience sounds nowhere near as horrific as yours. That in itself should stand as reason never to give up the fight. Nobody EVER deserves to be treated like you were, and I hope you are able to spread your story and make a difference. You are truly amazing, Tori.

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  6. Though I have only been reading your blog for a short time, I look forward to reading it every day. It is so real and I know I have said this before but you are a very inspiring person!
    I think it is great that you spoke up to that worker, people don't realize how hurtful comments, even as jokes, can be. Our ED takes them seriously and you shouldn't be embarassed for standing up for what is right. You are officially my hero for that!

    <3

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