Wow there is so much to tell you

I wrote so many papers while I was in the hospital that I need to copy over and share with you.  One is very long, 25 hand-written pages.  Several are from my previous admission to the hospital.

I unpacked my suitcase this morning.  Completely.  I feel pretty good.

I have appointments every day for the next week and a half.  Wow.  Two of them are scheduled for the exact same time, so I have to fix that.

It’s great having Puzzle back.  I feel like finally, finally I have my life back.

I see my T today.  I’m expecting a huge argument.  Well, maybe not.

Would you believe Dr. P actually wanted me to go to “residential” after the hospital?  Is she kidding?  My insurance (Medicare/Medicaid) doesn’t pay for a single residential program in the Boston area.  I suppose she didn’t really look that far.  And I haven’t a penny left to pay for Puzzle’s boarding.  I took out a cash advance on my credit card to pay for her this time.  I had to lie about my income to get it.  Dang!

Not that I would want to go to one of those fucking places.  The ED program at the hospital, where they fucking controlled my food, watched me in the bathroom (I don’t even puke), and–

Get this: It was within an hour of discharge.  They said I still had to follow “ED protocol.”  Such bullshit.  So I sat there and ate.  The whole time, I ate everything on my tray.  This time, I put the juice and water in my pocket, telling them I was going to drink them on the bus ride home.  Well, they said I couldn’t do that.

“What?”

“Drink them NOW!  You can’t drink them later!  Eating disorders protocol, remember?”

“Well, I’m not going to.”  I poured myself some diet ginger ale.  We are not supposed to have soda.  Another no-no.

“Give them back or we’re calling SECURITY!”

They actually called Security.  I’m not kidding you.  Those Security guys must have been laughing their eyeballs out.

So was I.  I told the guy from the kitchen who delivered trays and he was cracking up, too.

I laughed all the way home.

Hey, I’m going to have a good walk with Puzzle and not think about this shit.  Just listen to the loud, loud music and have a great walk.  We’re leaving as soon as the sun comes up.

I can hardly wait.

I'm back!

Yes, I’m back from my second trip to _____11 at the Prestigious Hospital in Boston, Massachusetts.  I left before the recommended discharge date, on my insistence.  Inpatient eating disorders treatment doesn’t jive with me.  This is the fourth time I’ve done it, and each time, it hasn’t worked, and in a way, it is a worse experience.

My T says that I merely panicked, thinking that the treatment at ____11 was going to make me put weight on.  Maybe so.  I simply don’t think that inpatient is the answer for me.

The first two times were at W Behavioral Care, in a nearby town.  The first time, I was in for five days and hated it.  I faked my way through the program.  I don’t know what I hated most.  Was it that I was the oldest there, and everyone else there was in their teens?  Was it that the girls called me “Grandma” sometimes, behind my back?  (That, I must say, was uncalled for, though perhaps I was their grandmothers’ age.)  I was of course overwhelmed by the place.  I hated that I couldn’t tell my friends anything about my treatment over the phone, or talk to any of the other patients about eating disorders issues; it simply wasn’t allowed except in their very structured groups.  All along, I told myself that I would lose the weight I had gained as soon as I got out.  I never wavered from this promise.  What disgusted me most was that while there, I was working on knitting a hat.  I completed the hat, and wore it home.  The nurse said to me, “Call it your recovery hat!”  Since then, I have despised the word recovery.  I also would have thrown the hat into the trash.  But I didn’t, because it matches one of Puzzle’s sweaters.

My second inpatient eating disorders treatment was at the same place, W Behavioral Care.  It is said to be the best place in New England.  I was tube-fed this time.  I despised tube-feeding.  It is like rape (no, I’m not being extreme when I say this).  It is an object forcefully inserted into an orifice of the body against one’s will.  Agreeably, I didn’t use the word, “No,” but in my heart, after it went in, I felt truly violated.  I ended up pulling the damned tube out myself eventually, in the middle of the night.  No one attempted–or dared–to insert it again.  Lord knows they’d fattened me up enough.  I felt horrible on the tube.  The “tube feed” goes right into your stomach just like food, plus we also had to eat.  It put weight on me way, way too fast, and my stomach hurt and all I did was fart all day long.  My knees were killing me, as was my back.  This misery wasn’t recovery.  This inpatient stay certainly didn’t help me any.  I was incredibly uncomfortable at my new weight, and took it off as quickly as I could once I left the hospital.

My third inpatient stay was my recent stay at ____11 at the Prestigious Hospital in Boston.  This is not an eating disorders unit.  It is a psychiatric unit that has an “eating disorders protocol.”  This was the first of two stays at ____11.  This stay was a nightmare to me.   I have told you much of it.  Much of it I haven’t told you.  I was treated poorly and came home extremely traumatized.  I haven’t been this traumatized since I was raped in 2008.  I woke up in the middle of the night thinking I was still there.  This happened over and over.  I had nightmares about the place.  I had replays of what happened to me, like videos playing over and over in my mind that I couldn’t stop.

The shitty thing about this was that I couldn’t get anyone to believe me.  I couldn’t even get my own T to believe me.  I couldn’t get my friends (with the exception of Frank) to believe me.  Everyone assumed that since I had an eating disorder, and this was the Prestigious Hospital, it must have been just the thing I needed, and surely I was exaggerating, or complaining because I didn’t want to get better, or complaining for the sake of complaining.  When my T came to visit me just yesterday, the first thing she said was how “nice” the place looked.  Well, fuck.  Architecture means shit.  People mean everything.

And the point is not so much what went on there, but my reaction to what went on there.  When I left, I was in a state of terror and shock.   I needed to talk about what happened.  I needed to process it.  I needed to be believed and validated.  I didn’t need ____11’s actions justified, or for anyone to blame me for having had a negative experience there, as my T had done.  And as I replayed and replayed everything, I relapsed in a really bad way, for eight days, until I brought myself into the emergency room–at the Prestigious Hospital–figuring that there wasn’t a chance in hell that there would be an opening at ____11.  There never is.  I figured I’d be sent elsewhere.

I spent over 24 hours in a little “secure” room at the psych emergency room.  This little room had nothing but a bed and four walls.  I was stripped of my regular clothes and shoes, and required to wear hospital clothes.  I knew there was a possibility I’d spend the entire weekend there, and it was now midday on Friday.  It’s sometimes hard to find a hospital bed for people on public assistance.

At first, I freaked.  But what ended up happening in that little, empty room was amazing.  I asked to speak with the chaplain.  I don’t remember her name.  It doesn’t matter what religion she subscribed to.  We spoke for perhaps an hour.  I cried.  I always cry when I talk with the chaplains.  I cry when I even think about God.  No, we didn’t talk only about God.  We talked about other things, too, many things.

You know, you don’t have to believe in God, in fact, you don’t have to have any notion whatsoever that there is anything that controls the universe, or any kind of spirit or supernatural power, or an afterlife (now that I don’t believe in), or judgement, or reason to behave well other than behaving well is simply a good idea to know that the medical profession and pills aren’t a cure-all for illness.  You may believe in the power of humor, or the power of thinking positively.  Many people pray and find this very therapeutic and relaxing and fulfilling–and for some, it is an essential part of daily life.

Let me tell you this: My talk with the chaplain, in that little room with nothing but four walls and a bed equipped with hookups for leather restraints, was the most helpful and amazing part of my hospitalization.  In fact, my entire stay in that little room was amazing.  At one point, they hooked up a telephone in there.  I used it a lot.  Then I slept a lot.  The ceiling in the first room developed a leak, and I had to be moved to another little room that was identical to the first, except the phone jack didn’t work.

So I was alone, no phone except for my phone line to God.  No, I didn’t talk on this phone, and God didn’t talk to me.  The chaplain had taught me that if God was anywhere, God was in these rooms, right beside me.  God is like air.  God is everywhere.  You breathe every day.  Feel it.  I breathed, as I do every day, all day long, and fell asleep.

I’m not sure when it was on the second day, after I awoke, that I realized all this stuff about ___11, that the whole reason for my eight-day relapse had to do with my stay there.  What I didn’t know was that by being sent to ____11, I would have the opportunity to deal with unfinished business with the unit and the personnel there.

I ended up being transferred on Saturday.  I had the weekend to make myself clear.  And I did.  I made my demands.  I told the nurses that I wanted to be treated better this time.  I told them how I reacted to my first stay.  I told them that I wanted to be treated like a human being and not like an animal.  I told them that in no way did I want to have that nurse that had been so cruel to me last time.  I wanted help from them, help with my relapse.  I had come voluntarily, boarded Puzzle and brought myself to the hospital first thing Friday morning.  It was my hope that all my demands would be met.  Many were.  Many weren’t.

The weekend was okay.  Monday was okay.  Then mid-Monday the “eating disorders protocol” began, and my progress ended there.  I had expressed myself already, though.  My unfinished business had been taken care of.  My mission was complete.

As I said, inpatient eating disorders programs and I don’t jive.  The worst of it was the limit on how much water I could drink.  This rendered me desperately thirsty.  I was truly suffering.  I’m not talking about dry mouth.  This is physical thirst.  Finally, at 6:30 yesterday morning, I stole a cup, and drank water in the bathroom.  This was the beginning of my breaking protocol, and the end of my meaningful use of “treatment,” that really wasn’t useful to me in the first place.  Later yesterday, I asked to be discharged that afternoon.  It was pointless to stay.

The good thing was that I got what I came for: I broke the cycle that I had been stuck in from my eating disorder.  I no longer felt the physical discomfort and subsequent despair that I felt when I came in.  So I truly didn’t need to be in the hospital anymore.  The doctor agreed.  So here I am.

I feel pretty decent now.

Update: How today went

I really didn’t sleep much last night.  Things were spinning around in my head.  I was processing what had happened to me.  It has taken a lot of thinking and recovering to shake off the trauma of what happened to me on the psychiatric ward as an eating disorders patient.  I believe that it could work for other people, many other people, but inpatient ED treatment isn’t for me, and that is now clear to me and to my treatment team.

Forgive me for being a bit technical here: I took a shit last night for the first time in ages.  Ever try to take a shit when someone is scrutinizing your every move?  You can’t do it.  Yes, I hadn’t eaten, so there was nothing in there to begin with, but the body does process stuff.  I shit my brains out over the last 24 hours.  It’s like getting all that crap, all those emotions, all the bad stuff, my anger mostly, out of my system at last.  Gradually, it is traveling down the pipes and into the septic system with all the other crap.

I saw my T today.  The session was fairly good.  The gist of it was that I was relieved to get out.  We agreed that the most important piece of my hospitalization was the medical stabilization that had taken place on the medical ward.  She asked me if I had thought much about what would have happened if I hadn’t gone in when I did.  She said I would have died.  I was a ticking time bomb when I showed up at Dr. P’s office to meet with her and Dr. P the afternoon that they sent me to the emergency room at the Prestigious Hospital.  I do recall being brought to the “psych” ER, then having my vitals taken, then being whisked to the “medical” ER side, and immediately given two liters of IV fluids.  I remember lying on that bed, feeling the coldness of the fluids pumped into my veins at a rapid rate.  Beyond that, I really didn’t know what was going on.  I didn’t get up much after that, except to pee, and I peed a lot.  My kidneys weren’t right.  Everything I drank came out of me right away.  They offered me jello, broth, and custard.  I remember I was afraid of the calories in the jello and the custard, but I drank half of the broth, after checking to make sure it didn’t have oil in it.  They kept me in the psych ER for a long time, overnight.  They didn’t watch me as closely as they watched some of the other patients.  I was too out of it to cause any trouble.

I told my T that there was only one thing good that happened to me on the psychiatric ward of the Prestigious Hospital.  That was when the chaplain came.  I asked for the chaplains to come nearly every day while I was in the hospital.  The same one came two days in a row at _______11, Wednesday and Thursday, just before I left.  You can talk to the chaplains about anything in your heart, anything you want to talk about.  I told all of them about Puzzle.  I asked them to pray for Puzzle, and they did.  The one who came Wednesday and yesterday told me that I was mistaken when I thought I had lost my faith when I had relapsed in 2008.  You know, this was something I rarely discussed with anyone, not even my therapists.  It was so hard to bring up.  It’s hard for me to talk about God.  I stopped believing in God entirely–or so I thought.  I couldn’t pray.  I stopped bothering to pray to someone I didn’t believe existed.  I didn’t see the point in it.  I had relapsed and the eating disorder was taking over my life and pushing God away.  This is what I thought but it wasn’t true, this chaplain explained.  She explained that everyone who hungers, hungers for God, and has God in their heart and right by their side.  She said that God has been by my side all along, that God has never left me, and that I have never lost my faith, because I am hungry and thirsty for God.  This made one heck of a lot of sense to me.

Yesterday when she came, she said that I keep a lot of secrets, that I hide myself, and that there is no reason, really, to do this, because God sees everything, all my secrets, and I can’t lie or hide myself or keep secrets from God.  So, she said, I should be honest with my therapist, and open with her, and quit lying.

I told my T today that the chaplain had explained this about not lying and hiding and keeping secrets.  So my T was kind of expecting I’d tell her all kinds of stuff, and I just wasn’t ready to do this just yet.  I told her a couple of things.  I told her about sneaking into the bathroom to drink water because I was so damned thirsty on ___11 due to the water rationing.  I told her that I drank tons of water before weigh-in on the last day and falsified my weight just to make sure I got out of there.  Plus those idiots forgot to tell me to take off my “edema dress” and change into my hospital johnnies.  I was scared she’d be angry, but she really wasn’t.  Then I really took a risk and told her I completely bullshitted my way out of ____11 because I was so desperate to leave.  She said, “Of course you did.  I know that.”  Well, done.  I have a few more things to admit to her, but I’ll save them for another time.

While walking Puzzle this evening I was thinking about things, and wondering if this hospitalization has really changed anything, if it shook me up enough that I almost died to teach me some kind of lesson, or if I will go on and on and anorexia will continue to run my life like it always has.  Well, there are no lessons.  There is rock bottom and I hit it.  It has never been that bad, not nearly that bad, ever.  In which direction I’ve traveled on this road I don’t know.  Maybe as far as I know it’s not going in any particular direction that I can see.  But all roads do go somewhere.  I just don’t know if I’ve gone up, or if I’ve gone down, down, down.

But I’m glad for the simple things, just having Puzzle back, and a shower, and shitting, and my precious privacy, my own home.  I’m glad to be writing to You after having disappeared for a few days.  Lying in bed and not walking around–just this in itself–has weakened me, so I’m gradually gaining muscle strength back as I walk Puzzle and just move my body around.  I think I mentioned that the hospital lost my shoes.  On my way out, well, in order to get home, I purchased a pair of flip-flops at the gift shop so I could take public transportation.  You know, you can’t walk outside in socks alone!  Anyway, I’m getting used to walking in flip-flops.  It’s kind of new and different.  Soon, I’ll have a new pair of running shoes and new insoles to replace the ones that were lost in the hospital.  Nice and squishy.  In a way–I know this sounds weird–the flip-flops represent something to me.  I don’t know what.  Maybe kind of like the afterlife, like after my body was restored to life.

So right now, I’m sitting at the computer, and I’ve got the flip-flops on.  You’d think I’d slip them off, being inside the apartment, but I haven’t.  My feet are kind of clinging to them, hugging them, the way feet tend to hug flip-flops to keep them from slipping off.  Maybe that’s how somehow my heart kept on beating even though I wasn’t sure if it would stop in the night.  It never stopped.  I woke up every morning alive, and I accepted it.  Maybe my heart was curled around something, clinging to life, the way my feet are clinging to the flip-flops right now.  Eventually, I’ll shut down the computer and take off the flip-flops and go to bed, and I won’t have that question in my mind of whether I would die in the night, as I had only a few weeks ago.  I am okay now.  I have been given water.  I am alive.

Here is one of the documents I wrote at the Prestigious Massachusetts Hospital in Boston

Here is the final document I wrote at the hospital’s psychiatric unit the day I left, yesterday August 11, 2011.  I choose to post this one first.  It is two pages long, written on lined paper in pencil.

REASONS I CHOOSE TO LEAVE TODAY

1. Whereas my stay on the medical floor was positive, my stay here on ___11 has broken my spirit and ruined my experience at the Prestigious Hospital.

2. I made many steps forward on the medical ward.  I kept a record of my progress in oral accounts on my blog.  Had I stays on _____11 any longer,  I would have become angrier and angrier, and taken many steps backward.

3. Because of your unbending “protocol,” I am filthy, thirsty, have no privacy or sense of dignity, and my contact with the outside world is nearly cut off.

4. The eating disorders protocol has not been individualized for me.

5. The nursing staff are completely lacking in compassion, warmth, and empathy.  From the time I arrived Monday evening, the nurse, whose name I forget, was unbelievably cold to me, and ____’s hostile behavior ruined my experience here at ___11.  Had I had a different nurse, perhaps I would feel completely differently about my stay here.  Also, the nurses have no time to sit down and talk to the patients.  I thought that was part of the job of a psychiatric nurse.

6. Being handed the conditional voluntary form was the last straw.  It was then that my mind was made up.  My reaction?  I laughed.  And laughed and laughed.

7. I have written a lot while here on the ward.  I have, in fact, been encouraged to write.  When I get home, I plan to type up these documents, and post them on my blog.  I will use no names or even initials.  My blog is fully Googlable.  In my blog, I write about my journey with anorexia: my fears, my hunger, my dreams, and over 300 people–maybe more by now–are following my journey.  Whether they care, are curious, or like to see someone suffer, I don’t know, but I know someone, somewhere out there is listening.

*************

When I read #7, there was a bit of shuffling around, and I sensed discomfort in the room!

Another document explains the second conditional voluntary form I was handed.  Perhaps it doesn’t, though.  I’m not absolutely certain.  My Section 12 expired yesterday, and I was free to leave at that time.  Of course, I took advantage of this opportunity!  But the medical student approached me Wednesday and said, “We’d like you to stay longer.  Will you sign yourself in?”  In other words, sign myself in so that they could keep me as long as their little hearts desired!  If, then, I’d signed myself in, and I wanted to leave, I’d have to sign a paper called, in short, a “three-day,” which would get me out, but it would take a full three business days to actually get out.  How could he think I would be that stupid?  No wonder I laughed.

More about my hospitalization

It’s late, and I’m still up.  I guess I’ve got a bit of energy left before the meds kick in.  And relief to be home and free.  I wrote a lot of stuff while in the hospital that I will copy over and put up here.  It won’t take all that long, but I don’t want to do it tonight (unless I suddenly change my mind in an instant) because the documents are fairly long and too many pages and I’ll run out of steam.  Most are in narrative form.  I think I wrote three or four documents while imprisoned at the psychiatric unit.  It was my only outlet of expression.  There was really no one to talk to there.  No one.  My phone privileges were taken away or severely limited.  Let’s just say I had to ask to make a phone call, and this would be granted at the nurse’s whim.  It would generally be a two-hour wait to get to make a phone call, and when I did have this privilege, the nurse monitored everything I said, “commented” on my conversation, and told me what to say to my friends.  My conversations were cut short at the staff’s whim.  I had to give a brief rundown of conditions on the unit and my situation, and then they made me hang up.  So calling into this blog, and talking to You, was completely denied to me.

I was closely monitored in the bathroom, though, if you have been following my blog you know I do not throw up.  This, though, is universal eating disorders “protocol.”  This word “protocol” was the buzzword there.  They really, really watched you.  Now, a slightly cracked door meant male staff and patients could see inside the bathroom while I did whatever I was doing in there.  I truly felt uncomfortable doing anything with someone standing right there, even with their back supposedly turned.  I couldn’t shower because I didn’t want someone standing near me and seeing me.  I didn’t feel comfortable having anyone see my body.  I can’t stand having to see myself, actually, let along have someone else see me.  On the medical ward, the “sitters” did things a little differently, so I was able to wash myself in the bathroom at least, though I never got a shower.  I washed my hair in the sink so long as they didn’t watch me.  I would not let them watch me brush my teeth.  On the psychiatric ward, because of the strict bathroom policy, I didn’t even wash up from the time I got there on Monday evening until just today (Thursday) when I got home.  I was filthy.

Okay, more.  I was allowed four eight-ounce glasses of water a day.  These were given at mealtime and one other time.  That’s it.  I’m used to a lot, lot more.  I was constantly thirsty.  Thirsty beyond belief.  When friends (the few I have left) called, the first thing I did was cry and tell them how desperately thirsty I was because of the water rationing.  Each time I asked why they were doing this, I was given a different explanation, and none of these were satisfactory or made sense to me.  I could hardly wait for mealtime so that I would get my water.  I didn’t care that I had to eat.  All I wanted was that bottle of water.  I drank it, and a few minutes later was thirsty for more.  I asked to be tested for dehydration.  I was assured that they were monitoring it.  They didn’t take my blood this morning or yesterday.  Interesting.

To make things worse, I discovered that the hospital, the most prestigious hospital in Boston and perhaps the country, lost my running shoes (with orthodic insoles) and clothes I came in with in the psych emergency room.  I don’t think, at this point, that they are going to be recovered.  The Human Rights person is working on it.  I think she’ll end up working on getting me a reimbursement.  I’ll save the receipts from what I pay to replace them.  I couldn’t get home in socks, so I purchased a pair of flip-flops at the gift shop to get me home.  I’ve saved that receipt as well.  I never signed any paper releasing the hospital from responsibility if something was lost.

Denial of bathroom privacy, and therefore ending up filthy, lack of phone rights, and denial of the basic human need for water were my main complaints about the psychiatric unit.  I am accustomed to locked doors.  This is fine.  But there were many, many more violations of my rights and dignity, but I’ll leave off, as I’m getting sleepy.

Let’s just say that while I found my stay at the medical ward very positive, my stay at the psychiatric ward ruined it all for me.

Okay, I’m nodding off.