My second full day after leaving inpatient eating disorders treatment

Now, it feels like it was all a dream, being there.  I am back home and life is about the same, but oh so different.  The experience was so contained, like none of the actual events and people on the ward spilled out onto my present life.  But the memories, and what I learned, and the ways in which I was transformed and how I grew will stay with me even though I am no longer there.

My room was right across from the nurses’ station, Room 512.  I could stand in my doorway and not leave the room, and still catch the attention of the staff sitting at the desk. This was a comfort to me.  At the same time, the staff could keep a good watch on me, just by turning their heads.  If I didn’t want to deal with them, I just closed the door, but that didn’t work too well, because the door had a huge window in it for them to see through.  I got used to it.  Folks like me who spend lots of time in psych wards get accustomed to being watched an checked on all the time, and being asked the question, “Do you feel like hurting yourself or anyone else?”

I brushed my teeth about ten times a day while I was there, probably more.  I called it my “coping skill.”  They talked about coping skills a lot there.  I was supposed to learn new coping skills besides starving myself.

When I first got there, they gave me a notebook.  They told me to write in it.  I wrote all the time in the notebook they gave me.  I was known among the other patients as being a person who was constantly writing.  I admit, I frequently shooed people away if I was in the middle of a sentence or a thought.  The notebook had 100 pages in it.  I wrote on both sides of the page, and filled a notebook and a half.  That’s 300 pages.  A number of times, staff people told me I relied on my writing a little too much, and that perhaps I should spend more time interacting with other people.  I brought the notebooks home with me and I still write in the second one, the one that was half full.  Mostly, I write down what I have eaten and what I plan to eat, and what foods I need to purchase to make my meals.  Food is very complicated.  I guess it’s turned into kind of a food journal.  Or maybe I should call it a “food journey” at this point.  My therapists have always wanted me to write down my food.  I do it now because I find it fascinating.  I refuse to slap together the same sandwich day after day, or dump the same breakfast cereal into a bowl, turn on the TV, and watch the morning news while slurping down breakfast.

Right now, I’m sitting at my desk typing away, with a cup of herbal tea beside me, Celestial Seasonings Roastaroma.  Roastaroma and I go back a long, long way.  I was introduced to Roastaroma before I was introduced to dieting, back in the days when I really didn’t give a shit what my body size was, when the “Freshmen 10” meant 10 first-year fools, not 10 bits of flesh.  I was introduced to Roastaroma around the same time that I was introduced to the bong, my favorite Joni Mitchell album, and all the goings-on at UMass/Amherst in 1975.  I didn’t develop my eating disorder until 1980.  That’s five years of Roastaroma when I dared to put honey into it without worrying about calories.

Calories.  What are they?  Units of heat, I’m told.  Mention “calories” and you see people act like children when you tell them about really bad swear word…the more calories, the worse the swear word, the more forbidden, and the more enticing.

When I was growing up, my parents had a copy of Philip Roth’s Portnoy’s Complaint lying around.  I don’t know if this is true, but we kids believed that there were a couple of pages in there that were truly filthy.  Naturally, we knew just how to find these pages in the book (when no adult was looking, of course) and read them to each other, awed by the profundities splattered on those two pages.  After a while, the book opened to  those pages automatically whenever we lifted it from the shelf.  Of course, we thought we were doing so in secret….

That which is forbidden is often more coveted than that which is allowed.  For the patients on the ward, the things that weren’t allowed were like gold.  Since this psychiatric ward is closely linked to the eating disorders ward “across the hall,” many things that are allowed on most psych wards weren’t allowed on this one, such as soft drinks, candy, gum, magazines, tank tops or short shorts…and the food was always, always, always kept locked up.  If a patient pocketed food, they got caught at it.  They were very strict about this.  At the eating disorders unit, patients aren’t allowed to wear anything with pockets to meals.  They can’t even wear hats  or hoods to meals.  Once, I put my pencils into my pocket, and I was told to show the staff person what I had pocketed, just to make sure I wasn’t taking anything off my tray.  Food became a coveted item among patients.  You didn’t have to be a hearty eater to want more.

Patients wanted more of a lot of things.  Mostly, they wanted more freedom. For many, it was a huge challenge to be on the ward and not be able to smoke for the entire time.  This puts a smoker under an incredible amount of stress.  I met a number of patients who wanted to transfer to other inpatient facilities–there are a slim few left–that allow smoking.  Others were bothered that they were in a “locked” facility and didn’t understand why the facility had to be “locked.”  I keep wondering the same thing myself sometimes.  I guess it’s for the sake of the minority of patients that need it.  The same goes for the bans on dental floss, shoelaces, pens (but not pencils), spiral-bound anything, and razors (well, duh).  If you wanted to be the exception to the rule, you had to get a doctor’s order for it.

There was this thing called “ED Protocol.”  In a nutshell–oh, I could go on and on, but I won’t right now because it’ll take all night–ED Protocol sucks.  Like the whole “one hour rule.”  I had to be out of my room for an hour after meals because it was a blanket rule for all the ED patients.  I don’t think for the entire time I was there I was able to get them to understand that I do not throw up.  I was kind of insulted that they didn’t believe me.  Actually, they didn’t ask me even.  They just assumed.

Don’t assume.  There are people of all sizes and shapes out there.  You do not know what is happening it their heads.  You can’t look at their bodies and measure their pain based on body size.  You don’t know the depth of the starvation in their hearts based on anything you see on the outside.

When I’m waiting for the bus, there’s this sign at some of the bus shelters that said, “Hunger is on this bus, too.”  Wow.  FELLOW PASSENGERS, BEWARE!  HUNGER IS IN OUR MIDST!

Hunger was on the bus, on the #71 bus, on September 1st, the day I took myself to the emergency room.  I was on the #71 bus on my way to therapy.  My stomach was far from empty and I was not hungry that way at all.  I was starving in the depths of my being.  In Watertown Square, at the CVS, I purchased a large package of Fig Newtons,which I gobbled up all the way to Harvard Square, right there in plain view of the other passengers.  I was the one who turned away from them, thinking that perhaps if I didn’t look at them, they’d be less likely to look at me.  I turned and looked out the window and saw nothing because my eyes were cold and numb.

At Harvard, we were all disembarking.  I hurriedly put the empty cookie package back into my knapsack and then walked forward to the rear door.   As I stepped off the bus, I stumbled and collapsed onto the concrete of the bus station. Luckily, I was able to get up quickly, and enter the subway station to get to my therapist’s office safely.

She was pissed at me.  Or shall I say, frustrated.  I was refusing all treatment.  I was refusing help.  I didn’t want to change.  I was engaging in more and more risky behavior. What was the statement I was trying to make? she asked.  Was I trying to stop her from going on vacation?  Or is this more like a huge Fuck You to the world?

Hunger is everywhere.  Hunger is on the bus.  Hunger is on the streets and in the projects and shelters and on the Boston Common every single day and night.  Hunger can be in a large or small family.  It can afflict an elderly person, and a person can be born into hunger.

I brought my hunger home with me from therapy.  I carried it carefully and didn’t fall off any more buses.  When I got home, I made some calls, one of them to my dog’s boarding place.  My mind was made up, and as soon as I brought my hunger to the ER and told them that my head was completely out of control, I felt one heck of a lot better.

I didn’t tell them half of it.  It didn’t matter though.  The other stuff came out after a while.  I had 26 days to talk about it all, to unwind the clutter in my mind, the insanity, the urge to starve, the urge toward gluttony.  The secrecy and the rituals of June and July that nearly killed me hadn’t stopped me, but now was the time to stop.

And I stopped.  I’m home now, dealing with the resulting practicalities and complications of that stuff called food–food, that I had pushed away from myself for so long–food, that was so forbidden that it was all the more enticing to me in my starved state.  Now, it fascinates me because of the sensations I get from it.  Everything is so new now.  I forgot how good food tastes.

I remember walking down the street with Puzzle in July of 2010, past a barbecue, and smelling the barbecue meat, which is one of the best food smells there is, unless you’re a vegetarian.  I began to salivate, and drool like a baby.  I wiped my mouth with my sleeve.  I could not stop the sudden outpouring of fluid.  Like tears.

When I got home from that walk, I knew I was at a really, really bad place with my starvation.  This year, it’s been 10 times worse.   I was going down, down by increments.  Let’s see just how much Julie can take before she can’t take any more.

And during my 26-day stay, I can truly say that I was supported every bit of the way, even as I realized that I could not go on in the capacity that I was in unless something gave.  I would either die or end up in a really bad place and there were no choices, no options, no way out of insanity.  It was the insanity of my eating disorder, and the insanity covered everything now.  The fog was so thick that I couldn’t have seen myself–as a fat person or thin–in any mirror at all, or seen more than a couple inches in front of me, a couple of seconds, not days or weeks…not even hours.

I didn’t see things in terms of “eat or die.”  If I had, the way out would have been much easier.  “Eat” is loaded with all sorts of other stuff.  That’s why it’s an eating disorder and not just “eat.”  I thought m brother’s theory of how to solve eating disorders wouldn’t work.  He says that all you have to do is “Cook food, then eat it.”

Or will it?

I am finding out that yes, it is that simple.  At least right now, anyway.  It’s a major challenge for me to do this.  A huge struggle.  I fight off the urge to throw in the towel, but the towel no longer matches what’s in the heap.  There’s no going back.  Yes, it is that simple, though, when you think about it.

I use this analogy all the time, and I’ll use it again: I’m on my own now with no training wheels to steady me.  This time, they took off the training wheels one at a time, just to make sure I’d be able to ride on my own okay.  We determined my discharge date a week before I actually left.  I had plenty of time to get ready for the big day.  And that was me, by the way, that you saw, kinda wobbly, but staying upright nonetheless, chasing the #71 bus all the way home.

 

Regarding my first full day out of inpatient eating disorders treatment

Well, here I am, out of the hospital after a 26-day stay.  I seem to be okay.  It was my choice to spend the 26 days indoors without fresh air.  I figured it would be too depressing to go outside without my dog, Puzzle, and to have to go outside “supervised.”

I was not on an inpatient eating disorders unit per se.  I was in a psychiatric unit.  This is kind of a unique situation, because the hospital is split up into two sections, the “eating disorders” section “across the hall,” and the “psychiatric” section, where I was.  But there’s a lot of overlap of staffing, and patients are occasionally transferred from one ward to the other.

When I went in, I was refusing all eating disorders treatment.  I refused to go “across the hall.”  I went to the psych side only to get a quick fix and then go out and starve myself some more.

It wasn’t to be so.  At first, they were going to let me go.  I seemed to be improving.  Well, that didn’t last.  I don’t know what happened to me, but the obsession of the eating disorder really got hold of me.  I was eating less and less.  Insanity gripped me and I became paranoid.  Finally, my treatment team met, and came to the decision that I required long-term care in the state hospital.  This, as far as I was concerned, was worse than starving to death.  I had thought I was at rock-bottom when I almost died in July, but right after that, I went right back to my eating disorder, right back into Hell.  Now, faced with incarceration in a state hospital, I knew I was at the lowest of the low, and that life, as I knew it, would soon be over.

I have all this recorded in writing.  Upon admission to the unit, I was handed a blank notebook, and told to write in it.  Everyone is given a notebook and told to write.  During my stay, I filled a notebook and a half–300 pages.  So everything is documented.  I would like to share some of what I have written with You, Dear Readers,. at some point.

I have it all documented how things turned out, how I came into the hospital with no intention of having my eating disorder, anorexia nervosa, taken away from me.  I held onto it with every bit of desperation I had left in my starving body.  No, it was not taken from me.  No, I did not win any battles.  All I did was to ask, as did Oliver Twist, for a morsel of nutrition at 4:30am on September 15, the day after they broke the news to me about the state hospital.  And in asking for food, for fulfillment, for nourishment and guidance and protection and love, I was inviting my life back into me.  It was one of the scariest things I’ve ever done in a hospital, much more scary than actually drinking the orange juice.  And that was the beginning of awakening for me, for returning to safety, to the earth, to sanity.

I ate from then on.  I don’t mean I suddenly started eating ten-course meals.  I mean I ate a little bit, then a bit more, and a bit more.  You know, it isn’t easy.  I fight off the urge to starve myself all day long.  I think I even dream about losing weight and cutting down on my intake, or eating nothing at all.  And now that I’m out in the “real world” I’m facing new challenges.  I don’t even know what half of these will be yet.  So far, for the first day, things have gone smoothly.  I’ve been lucky.  Or maybe I’ve just worked real hard at planning things out.

My “relapse” lasted from sometime in 2008 (like in the spring I think), and it’s still going on, but I see relief on the way.   I have gained strength already.  It is getting easier to eat.  It is getting easier to be honest with myself.  I have a greater understanding of how my mind works and how this disease has given me certain character traits; or, rather, that I have certain character traits suitable for anorexia nervosa to take hold…and grip hard. Much of this I have figured out on my own, just observing how I acted in various situations on the ward.

For my last meal in the hospital, I had pancakes.  Me.  Pancakes.  I spread peanut butter on them, then spooned applesauce over the peanut butter.  Then I sliced a banana on top of that.  I cut it all into pieces.  And without a thought, I ate it all up.  What a great choice for a last meal.  Some freshly ground coffee would have been nice, too….

I can hardly believe it’s only been a day that I’ve been out.  It feels longer than that.  I am doing my laundry right now.  Earlier, I went to the library.  It feels like a normal day.  Yes, it’s a normal day, except for one thing: I’m not starving myself.  And this, I think, is only the beginning of something fantastic.

I’m home!

….and….

Wow.

If you have listened to my audio posts, you might have a clue how I feel right now.

Or maybe you don’t.

Before I left the hospital, I took some time alone and just stood by the window and looked out.  I looked out over the parking lot and up at the sky.  It’s decent out.  Not raining for a change, not even overcast on my day of discharge.  I put my things together so that I could easily get them into my suitcase when the staff got it to me.  It suddenly dawned on me that I had brought with me very few belongings, and had lived on very little material possessions of my own for a month in this place.  All had been provided for me.

I began to weep.

Yes, all had been provided, and more.  I came into the hospital determined not to let anyone or anything take my eating disorder away from me.  No, no one took anything from me.  There were no thieves there except for an occasional caffeine-starved patient who took my tea off my tray when I didn’t show up for a meal on time.

I came to the hospital wanting a quick fix.  I wanted to stop the binge cycle and then go right back out and starve myself again.  I wanted to lose all the weight I had gained from bingeing, and then keep on losing even if I died.  But I wasn’t thinking in those terms.  I had no hope, no future.

Today, leaving the hospital is just the beginning of that future I didn’t think I’d ever have.  I believe that this relapse that began in 2008, over three years ago, the worst bout of anorexia nervosa I’ve ever had in my life, has finally turned a corner.

I do this for me.  I had to do it to save my own life.  Nearly dying in July didn’t stop me.  But while in the hospital this time I reached a level of insanity that brought me to the point that the doctor told me I required long-term care in the state hospital.  If any of you have ever been in a state hospital, you know that those places aren’t really hospitals at all, but prisons.

That, readers, was The End Of Life As I Knew It.  Because many people with anorexia might feel as I did, or might understand why I felt the way I did: that I’d rather starve to death than to have my life taken from me by incarceration in a state hospital.

One of the staff told me that I had to fight back. Then they all said the same thing: You Can Do It.

So at 4:30 in the morning on September 15, I walked up to the night staff sitting at the desk, and with a tremble in my heart, mustered up all the strength and courage I had, and asked:  “Can I have a glass of orange juice?”  Believe me, it was a lot easier drinking it than it was asking for it. And that was just the beginning.

This morning, I had my last meal at the hospital.  I had two pancakes.  I asked the staff to give me some peanut butter.  I had special privileges to get anything out of the kitchen that I want (I had to get a dr’s order for that).  I spread the peanut butter on the pancakes, then spread applesauce on top, then sliced a banana on top of the applesauce, cut everything up into pieces, and ate it up without a thought.

And no, it isn’t always that easy.  I asked the staff not to expect too much of me.  So they didn’t.  They watched me eat, and wrote down what I ate at every meal.  I got used to it.  Sometimes, it was a comfort.  I also got accustomed to having to sit right by the video monitor in the dining room.

When I started eating again, I chose to take myself off the meal plan.  This way, I could make choices that were more palatable to me.  Otherwise, I would have had to eat scrambled eggs every single day for breakfast.  The staff weren’t too pleased that I’d done this.  After that, I got real creative with the limited selections on the menu.  If you’re going to stay 26 days in a hospital and still eat, you don’t have much choice.

Before I left, I wrote a grocery list for myself.  On the way home, I stopped at the stores I needed to go to so that I would have the things I needed to make meals for the next couple of days.

I will be satisfied.  I will no longer be empty of life and joy and hope.  There is no point in burying myself in my eating disorder any longer, because I choose not to.

And yes, I fight off the urge to starve myself and lose weight constantly throughout the day and night.  I fight off the urge to skip meals or cut back on my food.  I had to fight it at the hospital and I imagine it will be doubly hard here at home.

But it’s over.  It’s over.  It’s over.  I stepped into daylight for the first time in 26 days this morning.  I know I have a huge task ahead of me now.

Come, follow me into the light.