What we believe in

As far as I am concerned, if you don’t want to jump onto the boat I’m not going to waste time arguing with you telling you why you should. Jump on now, or jump on later. I feel no need to defend anything. You choose. If you support this mission, that’s great. No financial obligations. Just tell me you believe in the project. I’ll name the project later.

We believe incarceration of any type is inherently wrong.

Those who are incarcerated or who have a history of incarceration are not in any way inferior to anyone else.

Those who have a history of incarceration are disadvantaged in terms of housing, education, employment, and are socially disadvantaged, left out of many organizations.

Incarceration and marginalization rates will significantly lower if housing, education, employment, and social opportunities are granted to those who have been incarcerated, and barriers are broken down.

These principles should apply across all prison systems, including the Criminal Justice System, the Welfare System, the Disabled Veteran System, the Mental System, the Juvenile System, the Addiction System, and any other Systems not mentioned here, now and any created in the future.

Do you agree? If you do, you’re a supporter. I’m not asking for monetary donations or any time commitment. Just say yes.

Five Fundamental Rights…Cross-posted…Alcott Unit Walden Behavioral Care Human Rights Case…

Hi folks, it’s been a while since I’ve posted.  I’ve been really busy.  Anyway, I’m shooting off an e-mail today and I’m making it public.  I didn’t put the name of the person I’m sending it to in the title of my post to avoid the Big Google machine.

I’d like to know from those of you who have been to Alcott (Walden Behavioral Care, Waltham, MA) recently:

Are they allowing you telephone privacy?  Do they let you have privacy on the phone if you ask for it?  Do they point out to you that you have this right under law in all cases and that everyone has this right no matter what the situation is?  Or is it only in “special cases”?

You are allowed a confidential call no matter whom you are calling.  It doesn’t have to be your therapist or your lawyer or a “special situation” and you do not have to be a certain age.  It can be your friend or your sister or your voicemail.

The only way they can say “no” is via a doctor’s order, and legally they should not be monitoring phone calls unless there is a doctor’s written order saying so.

I’d like to know if the Alcott Unit is following the law, and I have no way of knowing unless you folks let me know.

Anyway, here’s the e-mail:

Hi Lizbeth,

It has been a month since you phoned me and said paperwork regarding the telephone rights at Alcott was being assembled and sent to me.  However, I have received no paperwork from you or from the hospital.

For the entire time I have had this case open and running, paperwork has been lost, forgotten about, misplaced, not sent, and disregarded.  At first, I was surprised that this kept happening, but after a while, I told myself that “stigma” is part of life.  As a mental patient, I am on the bottom of the totem pole, and I have to fight to be heard.  This has been the pattern of my life since I became a mental patient over 30 years ago.

Are these Five Fundamental Rights meant to protect us and allow us respect and decency?  Or are they merely there on paper, lip service only, meant to keep us happy and shut us up?  There are gross human rights violations on every psych unit in the Commonwealth of Massachusetts.  I have seen these things happening and I am not an army of one.  I have a masters degree in creative writing and have written articles and books about these violations, past and present.

Are the people in our state government who are supposed to be protecting the rights of mental patients really doing their jobs?    

I am going to find out.  

Julie Greene

So, I haven’t sent off the e-mail yet.  Wish me luck.

Some background info, for those of you just popping in:

The Alcott Unit is an eating disorders unit.  It’s like a psych unit only specialized and has very, very restrictive rules.  The population is different.  Younger and just about all female.  Yeah, I know, the ED population isn’t all female but that’s who ends up there.  These are scared kids and they want to phone home, but guess what?  The phones aren’t private, they are in the hallway where everyone can listen in on your calls, including staff.  Of course, it’s deliberate.  They want to keep you under their watchful eyes and ears.

However, the law states that we mental patients are allowed confidential phone calls.  Hall phones without any enclosures are not lawful.  I petitioned for enclosures again and again and was turned down.

There is no medical reason to deny telephone privacy, none whatsoever.  The staff want control over the patients and they don’t want the patients yammering to their parents, friends, and spouses about how bad the care is there.  They don’t want information about mistreatment and neglect leaking out.  That’s the real reason.   That’s the reason on many units.

Any patient who poses a threat to the unit (like me) the unit will not treat, will mistreat, or will discharge.  That’s life, I guess.  That’s reality.  I do what I have to do to survive, and they are a business, doing what they have to do to survive.

Back in Feb 2012 the only reason I ate at all (and survived) was because I promised if I ever got over this goddamn eating disorder, I’d make the world a better place for the starving kids of this world.  Never mind whether I’m over my ED or not.  I just don’t have time to wait for the Prophet Elijah.  Fuck, I’m doing it.  I’m doing it.  I’m doing it.

 

I am updating my new blog

Here is the URL:

http://telephonerightsalcott.wordpress.com/

I only have three entries.  The whole thing should be done today, chronicling the entire legal battle, start to finish, or what has happened so far…not sure it’s over but there was a new piece to it yesterday that was the cap to the DMH part.  I think after the election I am taking this to the state level.

Okay, okay, let me back up.  First of all, I need to update the blog totally, and I hope to have that done by the end of today.  It’ll be a lot of work cuz I am also preparing for Nano and I don’t know if I can do everything.  No, I can’t do everything.

Basically, this: The telephone rights issue is solved and not solved.   The Alcott Unit claims it will grant privacy to any patient who asks and will only deny privacy (allowing a patient to use a private room) if a doctor’s order has been written up saying a patient cannot have privacy.  I believe this is what was orally stated to me by Lizbeth Kinkead yesterday.  I told her, of course, that I wanted to see all this in writing.

Folks, this is huge.  Done by little ole me.  But I’ll believe it when I see it.  Let’s see how it’s all carried out…if indeed it even happens.  And how the staff truly handle it.

A law or policy on paper does not mean much unless it is carried out, folks.

So that’s what I’m getting at and that’s what I mean by going to the state level.  I am going to try to find some folks in the government who will listen.  I am not sure where to find these people but I am going to look for them.  It is possible.

It is possible to get things done.  Me, little ole me, got recycling into my building just by writing an e-mail.  I tried and tried by going the route I thought would work, by talking to the Housing Authority, but they would not budge.  But an e-mail sent to the right person did the trick.  So I am hoping to go to the politicians and work magic.  What I want to tell them is that their laws, specifically the Five Fundamental Rights (politicians think in terms of the law) are not being followed and are ineffective.  I will tell them what it’s really like on psych units.

I will use the power of words.  Strong words.  I know I can do this.

Why are sick people being imprisoned and treated like criminals?

Imagine: A doctor is summoned to a suffering patient’s bedside at 3am.  The patient is visibly sweating and his clothes are torn.  His wrists are bleeding where he has struggled to free himself from the leather straps that bind him to the bed.  There are no sheets on the bed and no pillow.  The patient complained of chest and abdominal pain four hours ago, and then punched a wall.

The doctor approaches the night desk, where one night nurse is asleep, and the other is playing with an ipod.  He says, “The patient would not speak to me.”

The night nurse says, “He doesn’t speak English.  So we don’t talk to him.”

The doctor says, “Did he have any side effects from the Haldol?”

“How are we to know?”

“Give him more.”

How does this doctor sleep at night?  Well, he doesn’t.  He’s at work.  The staff sleep fine all night, on the job.

Anyway, I’ll bet the guys running this state have no clue what goes on behind locked doors, and I intend to let them know.

See ya later.

My human rights complaint against the Alcott Unit (eating disorders care) at Walden Behavioral Care: Update

It had been over a month and I had heard nothing, so I phoned the Department of Mental Health and left a message saying I had heard nothing from Walden or them.  I received a phone call yesterday and got to speak with someone at the Department of Mental Health for a bit on the issue…let me explain fully for those of you who are just tuning in.

We have here in Massachusetts something called the Five Fundamental Rights.  These protect patients and allow for very basic stuff, such as allowing you postal mail, privacy while showering and brushing your teeth, privacy while changing your clothes, a certain amount of living quarters (this may be shared with roommates), you can wear your own clothes, you can have visitors anytime that’s reasonable, any access to clergy at any time, any access to your lawyer at any time (I don’t know all the details of this cuz I’ve never accessed the right to legal counsel), and access to confidential telephone.  Most important of all is the right to be treated with respect, which is kind of a blanket law covering everything, in my opinion.  There’s more, I’m just paraphrasing here, and probably not remembering all of these laws.  Of course, the bit about postal mail is federal law, no one should be opening and reading your postal mail even if you are inpatient, but trust me, places will override federal law and read the text of patient mail.

Most states are not like Massachusetts.  They have no laws protecting patients.  So a patient can go into a ward and be watched in the shower, not be allowed to make phone calls or have their phone calls “monitored,” but our Massachusetts Five Fundamental Rights protect patients give us basic dignities, at least on paper.  Unfortunately, hardly any of these units follow the law perfectly.

Since I’m going to focus on right to confidential telephone, let me focus on that for a minute.

There are certain allowances.  If a patient is deemed exceptionally suicidal the staff might decide the patient might injure themselves with the phone cord or whatever, so the staff might say, “Maybe it’s best to stay away from things like the phone for now,” or whatever.  Or if the patient is in a super angry mood, it might not be a good idea to phone his or her ex, so the staff might say, “Hey, why don’t you wait 15 minutes, and chill a bit before making that phone call.”  It’s in the best interest of everyone on the unit that a patient no slam down a phone or pull on the cord and break the phone, cuz everyone else has to use that phone.  That plus no one wants to hear shouting and screaming on the phone, or someone getting all worked up.  However, this is an exception.

When I used the phone on the unit, often it was to check home messages.  I did this daily.  I made “business calls,” such as trying to make miscellaneous appointments (mostly cancel stuff) or just take care of day-to-day things that had nothing to do with my hospitalization.  Actually, for many patients, canceling appointments is crucial cuz if they don’t, they get charged.  So that I wouldn’t get interrupted, I did this first thing in the morning when no one would bug me.

A confidential telephone call means no one can hear you, and no one can hear the person you’re talking to.  It means you can feel free to say what you want and not feel inhibited or overheard or “monitored.”  It means you are not told what to say by “staff.”  Of course, since the phones are shared, phone call time is limited.  This is understandable.

On many units, such as the Thoreau unit across the hall, phones are encircled by little soundproofing walls so that a conversation can be made in relative privacy.  I felt quite comfortable with this.  The staff would walk by and they could peek in and check on me because one side was open, and that was fine with me cuz that was their job.  Unless someone stood close, they could not hear me while I was inside these walls.

On the Alcott Unit, on the other hand, the phones were out in the open.  When I was on the phone, everyone could hear every bit of my conversations.  Much as I tried, I could not have a private conversation, not once.  I tried leaving messages for people on their voicemail, for instance, but the message would cut off if I lowered my voice to a level that could not be overheard by other people, staff or patients, on the unit.

Now, why make a private phone call?  Was I having phone sex?  Doing a drug deal?  Giving out my Amazon password?  Nope.  Like I said, most of my phone calls were merely picking up messages and it was not crucial that they be private, only that I had peace and quiet so that I could think and write stuff down.  But sometimes, I’d talk with friends, and we’d be talking about their private business.  What if I’m talking to someone in the outside world, and they want to talk about something like their cancer?  Do I want the whole unit hearing this?  I don’t mind discussing it, in fact, it’s an interesting topic to me, but the staff and some patients are going to freak if they overhear it.  And in fact, they did.

One of the very first phone calls I ever made on that unit, I was talking to a friend and she asked me, “What kind of food did they give you?”

I replied, “Lorna Doone cookies.  I don’t feel so hot now.  My stomach is bugging me.   They made us eat them.”

My friend said, “Isn’t that junk food?  Aren’t they supposed to be teaching you healthy eating habits?  I don’t understand.”

Apparently, a staff person had overheard what I had said on the phone.  He approached me and said, “Julie, others can hear what you are saying.  Please change the topic.”

I was shocked.  So my phone calls to the outside world were being squelched and monitored?  From then on, I realized I could only discuss things like crafts with my friends.  They wanted to limit outside contact as much as possible.

See, they didn’t want to be exposed for who they really were.  Not being able to discuss with my friends how I really felt about what they were doing to my body ruined my treatment experience.  I was so darned lonely and isolated while I was there due to this “monitoring” that I simply gave up after a day or two and faked my way through treatment instead.

They monitor everything there.  This monitoring of phone conversations, done by not having walls around the phones, is illegal.  Having my contact with the outside world monitored by staff and overheard by the whole unit ruined my treatment there.

Oh, of course, there were a lot of other reasons why it all didn’t work out, but the repeated flat out denial of telephone rights was the main reason I got disgusted and left in February.  That and desperately needing a glass of water!  It was representative of an overall attitude of disrespect for me.  That was how I felt.   Disrespect.

Was it because I am on Welfare, or have another psychiatric diagnosis, schizoaffective disorder, which happens to be a psychotic disorder (which they don’t understand)?  Why do these staff repeatedly show this disrespect? Is it because my Medicare days are used up and my stay gets paid for by Medicaid, or the hospital picks up the bill?  Is it because I have a voice and speak up for myself and question everything?  Is it because I have the label “chronic”?  Is it because of my Jewish heritage?  Is it because I am highly educated and intelligent and published?  Folks, I am wracking my brains on this one and just can’t come up with why they had such a snooty, rude attitude toward me.

The day I left, it was very, very bad.  You’d think I had leprosy.  There were no pep talks and no pats on the back, just, “You’re out of here.”  The doctor barely asked me any questions.  He was very cagey when he asked me if I was suicidal.  Actually, he didn’t ask.  He told.  He said, “You’re not suicidal, are you?”  I didn’t answer, cuz I was, and didn’t really know what to say truthfully.  I didn’t give a shit what happened next.  I don’t think he read my chart that day, not that he ever read my chart.  He barely ever knew why I was there and I don’t think he cared, just wanted me out of there desperately, I think.  Whenever he bothered to listen to me, it was “token,” just to please me.

The only doctor that did me any good was Dr. N, an outside doctor they brought in (she got paid, I checked) who diagnosed the diabetes insipidus.  I did not need to be inpatient for that.  Diabetes insipidus was not why I was there and it is not a life-threatening condition, in fact, I have had it for 27 years without knowing it.  It is a kidney condition, not a mental condition and not a blood sugar condition.  It was very nice knowing I have it, though.

A lot of the patients get treated very, very well there, the ones with good insurance.  That’s the only way I can figure it.  So does it have to do with socioeconomic class?  How much money you have to fork up to their programs?  As soon as your insurance runs out or your parents can’t pay any more money, you’re shit in their eyes?  Guys, I honestly don’t know.

When you don’t have family who show up all the time and you don’t have “family meetings,” the social workers don’t know what the heck to do with you.  The last social worker was rather useless to me, didn’t make any effort to find me a therapist and made no calls on my behalf.  She showed little interest in me except to talk down to me.  Just her tone of voice…she talked baby talk to me.  So did the nutritionist…kind of a sing-song voice, like I was a first-grader who needed a very simplified, easy-to-understand version of “exchanges.”  Oh, please.

So anyway, the DMH (Department of Mental Health) person spoke with me yesterday and said that Walden had sent me a letter on the 7th of September.  I said I did not receive any correspondence from them at all and have been waiting all this time.  Of course, the letter was never sent, I’m sure of this.  Correspondence in this human rights issue has been intercepted or lost every step of the way, and I’ve had to repeatedly follow up with phone calls to make sure action takes place.

So this letter they sent was another denial, saying again that their phones are legal.  But according to M-Power, hall phones without enclosures are not legal according to Massachusetts law.  They do not allow for a confidential phone call.  The DMH person told me that I should follow the appeal procedure and write to the hospital and tell them that their denial of my legal rights impeded my care and was my reason why their care was not effective.  I could not have a phone conversation in private and this frustrated me no end.  Also, overhearing other phone conversations hurt my care and I should say this, too.  I plan to phone M-Power today and ask for their advice. I’m sure they will back me all the way.

When I was in Alcott in February, 2012, the whole reason I ate and saved myself from literally starving to death was so that I could change the world for the starving kids around me.  I figured that if I ever got over my eating disorder, I would help those kids.  When I left, I told the kids I’d get walls around the phones.  I am better now, and I intend to keep that promise.

My new book

Wow, I just discovered these journal entries from last year.  I love these writings and there’s no reason they can’t be included in my new book as historical records of someone’s experience in a tough inner-city emergency room.  I’ve got all the entries in a “category” and they come up together.  You need to scroll backwards I think.  The link I’m providing is to the  beginning page.  The first in the series is posted first, so you need to scroll up.

http://juliemadblogger.wordpress.com/category/julies-writings/hospital-papers/er-series/page/3/

I also discovered some e-mails I never sent and voice recordings I made.

This is what I am going to do with the audio posts from my inpatient stay

I have posts I did from February 9, 12, 13, 16, 17, 18, and 20 that are audio posts phoned in from the Alcott unit while I was there.  The social worker told me that blogging, even done over the phone, consisted of “online access” and therefore I was not allowed to phone into my blog anymore.

Of course, this was not the actual reason.  They were scared of what I would say.  I was, after all, an out-of-control mental patient with poor judgment and a poor sense of morals, right?  Can’t be trusted for a second, right?  Tells huge lies, right?  Might get angry and say anything, right?

Today my T told me I owed the unit an apology for blogging while I was there.  She said this to me, and yet she herself had not listened to the posts.  Not a single one of them.  Not one.  How dare she say that I should apologized based on no evidence.

I went back and listened, finally, to every single one of my posts in entirety.  I told my T today that I never name names.  I was concerned that perhaps I’d let one slip by.  No, I hadn’t let any names slip by.  Most of the posts talk entirely about myself and my physical or mental condition and how I am responding to treatment.  I read journal entries, some of which have nothing to do with Alcott or the patients or staff there.  I talk about a couple of things that happen there that make me angry in general terms.

I have my doubts about the entry from February 13.  In it, I am very critical of specific people and I use judgmental words.  I do not name names, of course.  In the larger picture, the things that I talk about in this entry are less important, really, than the content of the other entries.  I talked about the phone controversy which was fresh in my mind from the night before.  That was the night that I had reported the three nurses.  This is all stated more accurately in my post about the Five Fundamental Rights that I did last night or yesterday sometime.  In the Feb 13 post I did not lie or exaggerate about this incident.  I go on to use judgmental language about a couple of other staff.  These are not nurses, nor are they counselors.  I do not name these staff, of course, but still, I am not happy that I have done this in this audio post.  The February 13 post is the only one that I am not happy with.  I will most likely take it down.  I do not feel, however, that the post was in fact offensive to the unit itself nor did I harm anyone.  I was stating my opinion and observation.  Patients often state opinions and observations far worse.  It is part of their job to absorb this and take it all in, to let it go, or perhaps, to learn.  I do not plan to apologize to the unit.  I do not plan to apologize to the unit.  I do not plan to apologize to the unit.  I do not plan to apologize to the unit.

They denied me my telephone rights from the moment I walked onto the unit, before I even blogged once.  They claimed that I was medically stable when I was released, but I think it had been days since my blood had been tested for dehydration, or tested at all.  There is no question in my mind that I was dehydrated the last two days of my stay, and at the time of release.  I came in and told them what my “behaviors” were.  My behaviors are restricting, completely not eating for long periods, and massive binge eating.  They fed me and repeatedly monitored me for purging behavior, saying it was “the rules.”  They restricted my water intake.  After a big fight, I finally had this restriction lifted.  After this, access to water was very, very limited anyway.  They gave me no treatment for binge eating.  They fucking owe me an apology.

There is more.  There was this huge other issue going on that, to tell you the truth, I can’t tell you about.  It has nothing to do with me really.  Something was going on.  It’s not my place to talk about it specifically here or in a public platform, just not an okay thing to do.  I do what I believe is right.  If I see something happening that I believe is an injustice that is harming someone or a group of people, I speak up.  I encourage everyone to look into your souls about things like this.  It’s never really cut and dry.

Like if you see someone beating a dog.  What do you do?  Take the person aside to some corner somewhere, and beat them up yourself?  Call the police?  Shoot the person?  Get in-between the person and the dog and try to take the dog away from the person?  I know plenty of reasonable people who would have chosen #1, but I don’t think it’s the best idea.  So you’ve beaten them up.  Now what?  What have you proven?  Call the police and who knows if they will come.  Don’t shoot the person.   That could get complicated.  As for the last possibility…What you need to do is to call the cops, just my opinion, tell them what is going on, ask to connect to the animal control officer.  This is the one who handles this stuff.  Meanwhile, the cops are there.  You have done what you could about something you knew was wrong.  You didn’t just walk by.  Same with me.  I saw something was wrong.  It wasn’t cut and dry.  I looked into my soul.  I did something.  I spoke up.  And that’s all I want to say, and can say, about that.

So back to my audio posts.  I will add summaries.  I will remove the audio from the 13th, and leave the summary.  I should add that the sound quality of the audio post on the 13th isn’t that great, anyway.  Probably it was the phone connection, or maybe it was a lousy phone.  Psych units always have lousy phones.  Some of these entries are really poignant, by the way.  I love the way I read my journal entries aloud.  They are a historical record.  I can’t forget this.

The Five Fundamental Rights – Massachusetts – Have your rights been violated?

I will tell you what happened to me and I will tell you what I just found out.  There IS something you can do if your rights have been violated.

First of all, what are the Five Fundamental Rights?  Here they are, as written by the Mental Health Legal Advisors Committee:

THE ACT TO PROTECT FIVE FUNDAMENTAL RIGHTS
Prepared by the Mental Health Legal Advisors Committee
2009
On February 25, 1998, important amendments to the Massachusetts mental health laws took effect. The law, commonly called the Act to Protect Five Fundamental Rights, Chapter 166 of the Acts of 1997, guarantees certain fundamental rights to persons receiving services from programs or facilities operated by, licensed by, or contracted with the Department of Mental Health (DMH). The law was codified in Massachusetts General Laws Chapter 123, section 23.
All persons in public or private settings now have the following rights:
• The right to “reasonable access” to a telephone to make and receive confidential calls, unless making the call would be a criminal act or cause an unreasonable infringement of another’s access to the telephone.*
• The right to send and receive “sealed unopened, uncensored mail.” If the person is present, staff may open and check mail for contraband, but may not read it.
• The right to receive visitors of your “own choosing daily and in private, at reasonable times.” Visiting hours may be limited only to “protect the privacy of other persons and to avoid serious disruptions in the normal functioning of the facility or program and shall be sufficiently flexible as to accommodate individual needs and desires.”*
• The right to a humane environment including living space which ensures “privacy and security in resting, sleeping, dressing, bathing and personal hygiene, reading and writing and in toileting.”
• The right to access legal representation:
The right to be visited (even outside normal visiting hours) by your attorney or legal advocate (as well as by your physician, psychologist, clergy person or social worker), regardless of who initiates the visit.
The right of an attorney (or legal advocate) to access, with client consent: the person’s record; clinical staff; and meetings regarding treatment or discharge planning which the person is entitled to attend.
The right to “reasonable access by attorneys and legal advocates, [including those] of the Massachusetts Mental Health Protection and Advocacy Project [of the Center for Public Representation] and the Mental Health Legal Advisors Committee”, so that they may “provide free legal services.” Upon admission and upon request, facilities must provide the name, address and telephone numbers of the legal agencies and must assist persons in contacting them. These agencies may conduct unsolicited visits and distribute educational materials, at times the facility designates as “reasonable”.
All programs must post a notice of these rights “in appropriate and conspicuous places”. The notice must be provided upon request and must be in a language “understandable” to the person.
* These rights may not be revoked but may be temporarily suspended for persons in inpatient facilities by a director or superintendent (or acting director or superintendent) if exercise would present a “substantial risk of serious harm to such person or others” and less restrictive alternatives have failed or are futile. Suspension may last only as long as is necessary to prevent
harm.

Have your rights been violated?  Of course I have mentioned in here that my rights were violated at Mass General.  And yes, they were violated at Walden, specifically my telephone rights.  This was a huge problem at Walden, not on the Thoreau unit, which provided little enclosures for the phones so conversations could not be overheard, but certainly on the Alcott unit, where the phones were out in the hallway with no enclosures, none at all.  Trust me, everyone could hear everything.  It was absolutely awful.

As soon as I arrived on the unit, having already studied the Five Fundamental Rights, I saw these phones out in the hall and I asked, “Are these the only phones provided?”

“Yes,” replied the nurse, “these are your phones.”  She pointed to the two hall phones.

“It states in the Bill of Rights that I have the right to telephone privacy.”  The exact wording is “confidential telephone call.”

“You have to bring this up with the social worker.”

You can see where this was headed.  I was being automatically denied this right…unless I got “special permission” from the social worker.  The unit was breaking the law already by not having enclosures around the phones.  The nurse was breaking the law by denying that I automatically have the telephone privacy right by default.  It was already Wednesday, perhaps 3pm.  When was I going to see this social worker?  Probably not this afternoon.  I know how these places operate.

As you know, I wasn’t exactly in my best shape upon arrival on the unit.  But darn…what few phone calls I made while there were going to be precious to me.  With so little left in my life…hanging onto life by a string…so few people standing by my side…these conversations were not going to be overheard, by staff, by other patients, or by anyone, period.  I would insist on this.

There was a bit of a settling-in period, not much because staff kept grabbing me to ask questions and do examinations.  I had to leave messages on people’s voicemail.  I ended up leaving these messages beginning with the qualifier, “I am out in the hallway with no privacy whatsoever, but I wanted to tell you that….”  I kept my voice low.  This got tricky.  If I lowered it so that as few people overheard as possible, voicemail cut me off, and I had to re-do.  This proves my point, doesn’t it?

I guess I met with the social worker the next day.  I immediately disliked her.  Thankfully, I had the opportunity, very soon after, to switch back to my previous wonderful social worker I had before.  I grabbed this opportunity.  But meanwhile, I had to deal with the first one.  Her response regarding the phones was, “We provide hall phones for patient use.”  I think she said something about a phone in a room provided for exceptional situations.  Of course, I pointed out, with the printout of the Bill of Rights right in front of me, “confidential telephone call,” stating that every patient has this right and that the situation does not have to be exceptional.  Confidential should be the norm.  The social worker said I should file a complaint.

I did.  I filed this complaint with the Human Rights office immediately.  Already it was Thursday, and I wanted to make sure that all this got squared away before the weekend. I  spoke with the person, who said she’d definitely have someone up there to speak with me, but she did speak to the nurses herself right away and get it all straightened out.  To what extent this was put in writing in my chart I am not certain.  I don’t think it was adequately documented and it was definitely not “passed on” from shift to shift properly.  Either that, or if it was in my chart and it was properly “passed on,” staff were selectively forgetting or flat out denying that this documentation existed and that these interactions between me and Human Rights took place.

Immediately, I was granted rights to use the “Yellow Room” to use the phone there whenever the Yellow Room was not being used by the staff or the program.  The times that the Yellow Room is free are rather spotty, but it was better than putting up with those hall phones only.  Fine.  This was Thursday, I think in the afternoon.  I had advocated for myself and I was proud.  I had done it legally.  I had done it politely but firmly.  I knew my rights and I had not backed down.

The next day, a representative from Human Rights came to see me.  She took extensive notes on what I said.  Our conversation was lengthy and detailed.  She had thoroughly read my complaint.  She said these enclosures should be built, definitely.  She went and looked at the phones herself.  I wrote down her name and how to reach her.

During my many claims to my rights and requests to staff to use the Yellow Room, if I had to go so far as to mention having spoken with Human Rights, I would mention that I had spoken on the phone with the office twice voice-to-voice, and spoken in person on Friday with this representative.  Staff always denied that I these conversations had taken place, saying that I was lying that I had any interactions with the Human Rights office, implying that I was delusional.

A further problem I had was that the Yellow Room was usually only free in the evening, often quite late.  The Human Rights office, of course, closed at 5.  Evening shift was getting more and more belligerent on this issue.  There were evenings when there were three or four of them that were extremely hostile to me.  I knew my rights.  I didn’t take bullshit from anyone.  I demanded respect from those folks.  My status as “patient” didn’t mean I deserved anything less.

One night, again, I was denied use of the Yellow Room.  This time, it was so extreme that I had to report three nurses.  It was my duty to myself, the other patients, and the hospital in fact to report them.  I was told, “There is no Yellow Room.”  I was told, “There is no ‘room with a phone.'”  I was told, “Do you see those phones?  Those two phones in the hallway?  Those are your phones.  There are no other phones.”  So far, I was fighting these two nurses who were telling me these lies.  I told them, “You are telling me lies and denying me my rights as granted by Massachusetts state law.  I have told you that I have straightened out this matter and spoken with Human Rights.  Here is the written document Five Fundamental Rights and here is where it says “confidential.”  See?  I have that word underlined.  Here is the name of the person who came up and spoke with me at length from Human Rights.  What are your names?  I am going to report you.”  These two nurses gave me their names.  They had no choice and didn’t believe I would actually do this.

Yeah, sick, delusional mental patient, right?  Think again.

A third nurse saw me grabbing the Human Rights complaint form and must have gotten scared.  She came up to me and said, “C’mon, Julie, let’s talk.  Just talk to me.  Come to the dining room.”

Already, I was suspect.  Was she going to talk me out of reporting these nurses?  Or was she attempting to see my side of it?  Or was she trying to get me to back down?  I was on guard.  I briefed her.  That is, very briefly.  She said, “You have to understand.  We do indeed have a room with a phone.  But it’s not for just anyone.  You have to ask for it discreetly.  Quietly.  Don’t make noise.  None of this talk about ‘rights.’  We don’t want everyone knowing about this phone.  Not the teenagers, because they will talk to their boyfriends and make trivial calls and be on it all night.  You can say, ‘I need to call a family member about a divorce,’ or, ‘I need to call my husband about my child’s situation at school,’ something like that.  We will accommodate.  Just for certain people.  Not for everybody, okay?  Now you can have the phone.  I will stand right outside, and write in my chart until you are finished.”

I reported the third nurse.  All patients have the Five Fundamental Rights, no matter what their age is.  A young teenager has the right to make a call to her boyfriend in private.  A person has the right to make every phone call in private no matter what the reason, and should not have to explain who they are calling and what they are going to talk about to staff, because this in itself is a violation of privacy.  I wrote in my report that it was inappropriate for nurse #3 to sit outside the room while I was making this phone call.

I was at Walden for sixteen days.  Denied, denied, denied.  Sometimes, I had to fight, and then wait and wait and finally it would all get straightened out but there would be a long delay by the time I finally got the phone.  One time, they claimed they had to put a call into someone.  I waited two, three, four hours.  It is 2012 and it is hard for me to believe that in four hours they couldn’t reach this person with e-mail, home phone, cell phone, and texting.  They were bullshitting me.

Very late in my hospitalization, I think three or four days before I left, the social worker said that they had just discovered that I had been calling into this blog, that is, posting by telephone post.  She asked me to stop blogging.  I told her that I thought they’d been aware that I was blogging, because at Thoreau they were aware that I was blogging and encouraged me to blog.  I do recall talking to staff about this now and the staff over there did encourage me to blog.  But the social worker explained that they had been unaware until now, and that blogging consisted of “online access,” and online access was not allowed on the unit.  She then went on to say that occasionally she allowed patients to check their e-mail.

I told her that this made no sense to me.  Audio posts are output only.  I receive no input.  I only speak.  There is no gathering of information.  It is nothing like Facebook or any social media like that. I am simply making a phone call and speaking and it is not affecting my treatment.  I do not name names in my blog.  You guys know that.

Of course, now I am so fucking angry right now that I am totally blasting this situation people/places to bits as we speak.

I conceded immediately, though.  I said I would not blog.  Little did I know that I would no longer be trusted, that my word would not be believed.  I said that I would not blog.  They treated me like a child, like I would sneak.  My right to the Yellow Room was immediately taken away without explanation.

I say without explanation.  I was in shock.  I went to the Five Fundamental Rights document and assumed it was a “safety” issue.  I figured maybe they thought I was going to hurt myself.  This is the only basis under which they can suspend my phone rights.  It took hours before I could speak to a staff person who would reason…that is, be polite to me.  She told me, “Because we think you will blog.”

It was really all over.  Treatment, everything.  I was such a threat to them.  No wonder the looks.  No wonder the hostility, the coldness.  Some of them were damn anxious to get rid of me.  Like scared of me.  Looking at me through the corners of their eyes.

I had to leave.  I just couldn’t bear the disrespect.  For sixteen days, I’d been fighting for the phone, just to make simple phone calls without the whole unit overhearing.  And just about every time I asked for something I had the right to by law, I was denied, denied, denied.  I felt like I was being treated as less than human.  I couldn’t bear it anymore.  This was detrimental to my mental health.  During the last days, I don’t know how many days, I was going downhill.  I knew, for my own sake, I had to save myself, and leave.  This whole rights issue nearly ruined my treatment.  I told them this.  You bet I did.

The Five Fundamental Rights is law.  Massachusetts state law.  Just the same as drinking and driving.  Respect the fucking law.

No, I will not shut up.  I never do.

Have your rights been violated?

File a report with M-Power.  Go to this document here:

http://www.dlc-ma.org/CLRD/Other/The%20Five%20Fundamental%20Rights%20for%20People%20In%20Psychiat-1.pdf

Contact M-Power.  They are good people.  I am going to do this.  Remember what happened to me last summer at Mass General?  Oh boy.

Some thoughts before I go to bed…it is late

I have been writing so much today in here.  I spent a lot of today in bed.   I remember I got up at some point and told myself that life didn’t exist other than in bed at that moment.  I went back to bed.  And later, that I was unable to dress myself, and this got very complicated.  I questioned it all.  Clothes…what a hassle.  I wouldn’t have bothered except Puzzle needed to go potty.  I threw on a pair of pants and a huge coat and a pair of socks and sneakers.  You wouldn’t believe what an ordeal that in itself was.

Details.  The good and the bad.  Mostly good because I am rapidly on the mend.  I mean like, wow.  I am hugely disappointed in myself on one level, but at the same time I’m just accepting the fact and accepting and accepting that I need this medication, Imipramine, and my dream of being off, off, off psychiatric medication…dang.  A dream.

I need to rethink this.  I don’t need to rethink this tomorrow.  Tomorrow isn’t soon enough.  I need to rethink this immediately.  Yes, Imipramine is in the classification, “antidepressant.”  The brand name for Imipramine was Tofranil.  Long since forgotten.  Imipramine came out in the 1950’s in the USA and it was the first antidepressant.  The first.  You can imagine.  This was a revolution in psychiatry.   Prior to Imipramine they had antipsychotics but not antidepressants.  If you are not familiar with these terms let me just say you would not go to a tattoo artist for a manicure.  But you know something?  I have an open mind and I have heard that there are some very talented tattoo artists out there.  But at any rate, “antidepressant” or not, Imipramine has been around a long time and has other interesting uses, both “FDA approved” and so-called “off label.”  Many, many drugs are used for “off-label” purposes.  They do quirky things.  We accept this.  “Off label” use of drugs is controversial sometimes but sometimes not.  They give kids Imipramine for bedwetting.  Maybe they give it to adults for this, too.  I think this is off-label but I’m not sure and I’m too lazy to look it up.

So…I have to ask myself…this question of how to define…I am not taking Imipramine for depression.  I am taking it for binge eating.  I need it desperately for binge eating.  And here’s where it gets weird because…Is binge eating psychiatric?  Don’t jump to conclusions so fast here.  The DMH here in Massachusetts doesn’t even recognize eating disorders as mental illnesses.  I say this because there are no programs and no help at the state level and nothing inpatient for people in the state hospitals.  None of these fancy places scattered all around the country, these state-of-the-art places for ED that have equine therapy and lovely wooded settings and treat everyone, they say, regardless of what insurance you have, so long as you’re loaded and your insurance isn’t Medicare and isn’t Medicaid and in most cases you also have to be female and in most cases you also have to be young and in just about all cases you have to have a loving, caring…like…family…and by this I mean mother father sibs grandparents etc etc etc and they don’t pay for the plane ticket to get over there, either.  Best of luck selling your second home.  In other words  ED…it is tricky…the system…treatment…it is fucked.  It is fucked and off-label.  Just like I am fucked and off-label trying to work within the system and get help.

Anyway, psych meds…psych vs ED…these being kind of considered separate but in the long run not…a double-standard, actually.  As an ED patient in the hospital, more demands were placed on me and I was considered cognitively better off, yet I had fewer rights and I was considered less trustworthy because they assumed I was intrinsically sneaky.

I’m not a clothes person.  I really don’t give a shit what I wear.  I’m not fancy and wear things that are inexpensive and practical.  I want clothes that keep me warm in winter.  I do not like clothes that are decorative or have flowers on them, but if something keeps me warm and has a flower on it, I will put up with the flower I suppose.  It matters more to me what something is made of and whether or not it is going to make me itchy or if it has a label on it in an awkward place that will itch me or something like if it’s right at my neckline.

Another thing that matters is that I don’t want clothes made out of material that needs dry cleaning.  Who the heck can afford that?  I think one of my winter coats is dry clean but I’m not sure.  I just don’t bother having it cleaned.  I’m better off with a coat barely dirty than have a coat lost or ruined by a dry cleaner and then end up charged for it with hardly an apology.  This is the worst case scenario, I know, but yes, this did happen to me once, back in my “pushover years,” which are now officially over.

I am 54.  Never have I been this strong and you have not seen everything that I can do.  But you will.

Recovering FROM eating disorders treatment…part two

I tried so hard…I don’t even know what to say, what to do at this point.  I did phone my T back.  I don’t know why, I just wanted to tell her that I felt…what I said above, that I was recovering FROM treatment.  What I said in my previous article that I posted here.

I was thinking something that I subtly pointed out in a group: “meal plan” is one thing.  “Healthy eating” is another.  The group leader was making a list and I wanted to put “healthy eating” on the list.  She said, “We already have that on the list.”  She pointed to “meal plan.”

I wanted to say, “Bullshit,” but of course, this was in public, so I said, “My words were, ‘Healthy eating.  That is different.  Could you add that to the list?”  Thankfully, she did.

What is the difference?  “Meal plan” isn’t necessarily healthy.  If you are weighing and measuring your food obsessively, this is far from healthy eating no matter what you are putting into your body!  If you eat food you don’t like, forcing yourself to do it because your meal plan says you should, this is not healthy eating.  If you are following your meal plan because someone else is forcing you to and you do not have a say in it, this is not healthy eating.  If you do not season your food properly in a manner that makes it at least palatable, this is not healthy eating.

Healthy eating means respecting culture.  Healthy eating means using good table manners.  Healthy eating means complimenting the cook.  Healthy eating means being thankful.  Healthy eating means sharing with others and leaving a seat for the wanderer.

Healthy eating means trying something, and if you don’t like it, politely leaving it without complaint or fuss or excuse.  It means not eating something that sickens you even if it is on your meal plan.  It means eating with attractive utensils and dishes, and sitting in a chair at a clean, uncluttered table that is at appropriate height for eating.  It means eating not too fast and not too slow.

Healthy eating means, first and foremost, common sense.  If you are going to use food in a healthy manner, you will use logic when making food choices even if it means you have to choose foods that do not follow your meal plan.  This means that if you are having a veggieburger and want to pick it up with your hands, you will need two pieces of bread, not one, that is, one slice under the burger, and one slice over the burger.  A veggieburger will also look much more attractive between two slices of bread, perhaps cut in half with slices of tomato if they don’t dribble all over the place.  Please do not have a nightmare over this extra slice of bread.  If you are having a nightmare over the extra slice of bread, I suggest you use a fucking “coping skill” such as yoga or read one of those handouts they gave us on how to do deep breathing properly.

Did they teach me healthy eating at Walden?  Did they teach me this list of healthy eating that I have listed here?  Absolutely not.  Absolutely not.  Absolutely not.  Absolutely not.  They gave me confusing information about nutrition.  In one group, we played Nutrition Bingo.  I am not kidding you.  I heard it was helpful for some people to play Nutrition Bingo.  If I were perhaps 84 years old and not 54, I would have gotten very competitive about this Bingo and suggested that we all go out to Foxwoods or some other casino and hold our game there instead of on the locked ward.  As a person who lives in elderly housing where they have Bingo games three times a week right downstairs, where I hear them shouting out numbers and these addicted, pathetic elderly people who have nothing better to do with their time scrambling to find Bingo chips, I decided that Nutrition Bingo was not my thing.

Later on, I spoke up.  I was always speaking up.  When I saw something that in my mind wasn’t right, I said so publicly.  Sometimes, I felt that speaking up, no matter how politely I did so, could not be done in proper balance, that is, a balance between accuracy on one hand and avoidance of negatively affecting someone’s desire for self-improvement in some serious fashion.  This negative effect had to be serious to cause me to shut up.  The things I say disturb people.  I shake things up.  I make people think.  It is my intent to do so, to challenge.  You know something?  I help people when I do that.

So Nutrition Bingo,  I said, offended me.  I said this game is for children.  The argument I got was that some people on the ward were indeed children.  I argued back that Bingo was for very young children not the ages that were on the ward.  I argued that furthermore the information given out in the group as well as many other nutrition groups can be found on the Internet at reliable nutrition sites such as government sites on nutrition or medical encyclopedias, and that using a public library card we can now access a lot of medical documents online.  You don’t even need a college library card anymore.  I pointed out that one nutrition group had been very helpful, and this one was good because the nutritionist wasn’t giving out information that was so easily accessible, that I’d heard a zillion times over and over anyway.  She wasn’t talking like a textbook.  I said that I had personally spoken with this nutritionist and thanked her for giving me useful information.  I really wanted, in that instant, to make this woman’s day.  I really wanted to tell her, from the bottom of my heart, that she was not like the rest.

I did ask my usual nutritionist the question about how not to binge.  My T told me that the nutritionist would be the person to ask.

This is kind of pathetic when you think about it.  I mean, I was going to eating disorders treatment.  I should have been able to shout this question, scream it so loudly that it broke down every wall of the place.

I have thirty-two years of Binge Hell behind me, enough shout that will break down more walls than they have.  I have seen so much of my own repeatedly asking and asking and asking for help with bingeing over the years, and now, I see their negligence.

In 1981, my T was clueless but I don’t fault her any more than I fault society and “the system” and myself and mostly, that’s just what happened and that’s the way it was.  I am talking about my very first T.  She was excellent and ran a support group for people who were overweight.  She said she couldn’t put me in the group because I wasn’t overweight.  But she did good therapy and by this I mean I learned a lot, lot, lot, exponentially a lot from her in just a few months.

There is a big soft spot in my heart that just opened up for her.  She was such a good therapist and human being.  She cared.  She listened.  You couldn’t ask for a better first therapist considering there were none available for ED and no one knew about ED anyway.  She knew nothing about ED so it was like talking to a blank slate.  May everyone be so blessed.

The agency that my first T worked out of had a good reason why it had no ability to treat my ED with the personnel it had.  The whole town where I lived in Vermont did not have the capacity to treat ED, none of the mental health practitioners had knowledge or experience.  There were five psychiatrists in the county.  One was a drunkard.  One refused to take on serious cases of psychiatric illness.  One died.  One threw his training out the window and adopted a philosophy of “micro-doses” of medication.  Funny, the number “five” sticks in my head, but I think these four were it.  I think the one who died, the one I call “Scully” in my memoir, was the best of them.  The rest of them had no inner sense of medical responsibility.  You could tell by the way they prescribed.  The lack of psychiatrists in the area, and with the best of them dropping dead, down one head count, being short-staffed trickled down into the whole mental health system covering, I’d say, a huge bite, the southwestern corner of the state of Vermont.

I got fed up, having tried and tried, but was tired of commuting to far off places for what I considered was still barely acceptable treatment.  So I moved to Boston.  It is all in my book.  This was 1986, the year I ended up in Metropolitan State Hospital for three days.  Now that place was a trip and a half.

Now, while I sit here, am I blaming the state of Vermont for ignorance, lack of knowledge, treating me for the wrong illness, etc etc etc?  There were a lot of assholes involved, true.  There are assholes wherever you are.  Some people are worse assholes than others.  Some assholes should be “snaked out” and hung.  I do this with my words.  I don’t do this to hurt them but when I think, in the back of my mind, that people read what I write on here, and about the possibility, for instance, that an asshole will Google me someday on a whim and read about himself and the shit he did to me and that I haven’t forgotten….You know, forgiving someone is just plain unnatural.

The micro-dose doctor was the first whom I convinced to give me Imipramine.  Of course, he was unfamiliar with the research.  I told him about the book.  It must have taken me about a month to get up the guts to ask for this drug.  It is the first drug I have ever, ever, ever asked for.  Actually, I don’t ask as a general rule.  I am not “medication-seeking.”  But let me back up.  I rarely, rarely, rarely spoke with the micro-dose doc.  He was in private practice with the psychologist who collected huge sums of money directly from my parents for my treatment, talk therapy twice a week.  The psychologist told me I would not get to see the psychiatrist as a general rule.  Everything would be done through the psychologist, who said he “knew all about the medications.”  First of all, he did not have the training to prescribe, so really, how much could he possibly know about the medications?  He did not have medical training and if he did, there was no framed degree indicating this in his office.

Therapy with the psychologist consisted of him being 20 minutes late.  This was the first 20 minutes and my parents paid for these 20 minutes.  We would talk for the next 20 minutes.  I recall feeling that his faked compassion was way overdone.  I felt that I could have done without the “I understand” because he clearly did not.  Now 40 minutes were over.  This psychologist would then shoo me out of the office, saying that he was going to call my parents and discuss with them my case.  This took up the last ten minutes of the session, which my parents paid for.  Often this phone call to my parents, which concluded the session, used up 20 minutes.  The psychologist told my parents everything I had said to him.  The psychologist told my parents what medications they were thinking of trying, what treatments and new approaches they were considering, what my prognosis was, what my diagnosis was, and so on.  I was  25 years old at the time.  I was legally an adult and my parents did not hold legal guardianship and we didn’t even live in the same state.  I was aware that he was calling my parents, but not aware of the content of these conversations.  I thought he was telling them, “She’s doing well.  I am seeing her next Tuesday and Thursday.”  It was only years later that I learned from my parents that the psychologist and the micro-dose doctor were considering Lithium.  But maybe he just told them that so they’d think something was being done for me.  The psychologist never told me anything or answered my questions or outlined what they were thinking of doing.  He told my parents everything.  Maybe he needed his glasses changed and read my age wrong.  Like, maybe he saw “25” and thought it said, “2.5.”

As for the micro-dose doctor, he, too, had the “I understand” lines memorized.  He was good at compassionate facial expressions and his beard went along with this nicely.  I don’t know what was up with the micro-doses.  He gave me something like 25 mg of Imipramine but I’m not sure of the exact figure. Whatever he gave me, trust me, was micro, and I’m sure there was no scientific evidence that the dose I was on was a clinically effective or useful dose for binge eating or for anything at all.  Of course, this micro-dose was useless to me.  He threw his hands up into the air and said the medication didn’t work and that I was responding to very few of the medications he gave me for anything.  I had no access to documentation such as pharmacy inserts…no, let me correct myself…I could have asked at the pharmacy but I didn’t have the guts.  Finding out that this guy was…what’s the accurate word?  Medically irresponsible?  Finding out that this guy was placing patients in harm’s way through prescribing incorrect dosing, and doing this for the sake of adopting a certain “style” of medical practice for the sake of style alone over the well-being of the patient…maybe I was scared to see the insert for real in print and official and know what I full well already knew.

Years later, after I moved, a patient of his died that I happened to know.  I haven’t a clue what she died of, and I’ll never know.  She may have gotten a bad case of flu one day.  All I got was a postcard saying where she was buried.  Actually, there were a number of patients of the micro-dose doctor that had died over the years.  Mental health patients were dropping dead and dropping dead and dropping dead.  There were four psychiatrists and I can’t say I blame one of the four for refusing to take on “serious” cases.

It was just the way things were.  Inadequate care in a rural area.  Me, eating disorder, forget it, that went ignored…they were treating my mood and thought problems.  Treating these secondary diagnoses and doing a bad, bad, bad job of it, just making me worse, taking money from my parents and giving them information about me that I myself didn’t have access to.  I wonder if I even signed release forms giving them permission to speak with my parents at all.

And you know something?  It’s a given.  That was how people were treated back then.  There were lots of micro-doctors and there still are.  Every morning, there are therapists who sit in front of the mirror practicing their fake compassion while straightening their tie, and as soon as their Windsor knot is complete right under their Adam’s apple, they double-check that the dollar signs in their eyes are somehow photoshopped well enough to appear to be tears of empathy.  It’s amazing what you can do with technology.

What happened back then is done and it is history.  It should be written down and remembered and never forgotten.  I hope micro-doc and the accompanying psychologist read this and remember that Julie Greene is alive and kicking and telling her story…I hope they know that I am strong and will not be pushed over like that again…

I became ill in 1980, and moved from Vermont in 1986.  That’s six years of patients dropping dead.  Their story is not lost, please, please, let it not be lost.  I hope that people remember them in their hearts.  I hope that journals are found and kept and cherished and yes, published.  I hope that artwork is saved on walls and preserved forever.  I know someone in Vermont is sitting at a desk right now, at a keyboard, writing a book about their life.

Only a few miles away, in a bathroom stall, a woman etches her initials, and next to these initials, the initials of the only other person in the world that cares about her, right here, right now: her hospital roommate.

May the initials stand.

The question I keep harping on is which situation is more pathetic: not getting treatment in rural Vermont while I lived there between 1980 and 1986, or not getting treatment for sixteen days at Walden Behavioral Care, state-of-the-art eating disorders specialized inpatient treatment, earlier this month, that is, decades later than when I lived in Vermont?  I just…damn…

Maybe I should just whittle it down.  Figure out what was most important.  Figure out what I got out of being there and what I went there for in the first place, what happened, and where to go from here.

I really didn’t go there for treatment, anyway.  I was blank and dead inside and treatment was not relevant.  Getting food into me and getting blood sugar up and getting myself less dehydrated was priority.  Sleep, meds, warmth, cleanliness, non-violent, compassion, spiritual wholeness, toilet.  I think that would cover it.

I walked in there and fell into this thing.  For a bit, I just let them care for me, just gave into it all until I had the strength to do for myself.  I felt obligated, the obligation to myself to make my own decisions as soon as I was strong enough to do so.  It was not a sudden switcheroo.  It was a gradual strengthening.

I am not talking about surrender…but I am.  I had no choice, really.  I guess I just passed out, not literally but in the metaphorical sense, and someone picked me up off the floor and brought me to the table and it was really easy to allow this to happen because I was in such a starvation stupor.

Then, my will and strength returning…this was a good thing, too.  I am stronger than ever.  This was really, really weird.  Now that I think about it and think and think, this strength is carrying me now…If I did not have this strength, this new, strange strength….

What the heck is this?  What is this strength?  It is like an inner something.  I have felt it within me.  It is like a lamp that is lit, a flame, a very strong flame, not a wavering candle that flickers every time the wind blows and has songs written about it even.  This strength is one of those Coleman lamps, so bright that people shield their eyes.  Those Coleman lamps are loud.  Their flame is clear.  Their flame is consistent.  The lamps have been around for a long time, and you can rely on them.  You don’t snuff out a Coleman lamp.  It is well-protected with glass.  The glass is a well-defined boundary and there are no questions asked as to where You and I begin and end.  A Coleman lamp lights the way for others.  A Coleman lamp does not shut up.  A Coleman lamp is not afraid to speak.  A Coleman lamp reveals, and tells it as it sees it.

That was always the thing I did in the hospital.  I said things the way they were.  I did not disguise what I said just so that it would be presentable or “appropriate” or pretty.  If you keep on doing things like this, that is, censoring, you will never grow up.  If you are always proofreading yourself and editing what you present to the world, you will stand there dressed in clothes that have nothing inside them.

I wasn’t really sure what to say after I wrote that last sentence.  Maybe you are one of these invisible people.  Maybe when you are invisible, it is a heck of a lot easier to take a good look at yourself with honesty and sincerity and ask yourself some very basic questions, because now, you can see all the way to your heart.  We can cut the rest of the crap out and see the damn thing in there beating, beating, beating.

I can say that one thing I learned on Alcott was that I am, indeed, knowledgeable about a few things.  You don’t need to be super educated to be knowledgeable.  Being a mental patient does not cancel out “knowledgeable.”  It does not cancel out my degrees and it doesn’t cancel out life experience and it doesn’t cancel out my age or the fact that I am legally an adult.  It does not excuse disregard for federal or state law or the policies of a facility where I am situated, such as a train station, office building, church, restaurant, or hospital.  Yes, I am knowledgeable and I am responsible and I am an adult and I am an extraordinary writer. I am a respectful human being.  I take pride in myself.  I speak well and express myself well.  I get my point across.  I am amazing at getting what I want through my words.  I am amazing at using my writing to solve problems.  I can use my writing to do things now in a matter of hours that would ordinarily take weeks in a hospital or months in therapy.  Actually, what I do with writing and what goes on between my brain and my writing, this interaction…it is hard to explain.

New paragraph.  What I do with my writing and what goes on between my brain and my writing, this interaction, is so powerful…

Let me insert this:  It is not a “coping skill” it is POWER

Fuck coping skill I am not sitting here right now writing this for the purpose of coping with bad feelings.

My feelings are not bad.

Yes, I have rights…while I was in the hospital I had rights granted to me that were granted to all patients.  These rights were repeatedly being broken, broken, broken….It was not just me it was all the patients…this has to do with nobody being aware of the Patient Bill of Rights and not reading the document or not caring.  I care, I care, I care…this repeated over and over and was a constant battle I kept to myself…

Well, let’s just say I didn’t sit around whispering…I think whispering secretively between two people…talking about others…”She said this…”  “Look at her…”  “What’s her problem…” etc  I tried to stop this whispering.  It was something that shocked me at first because adults don’t do it.  At my apartment building, they do it in normal speech tone.  They sit in the hall, congregated there like they think this is some nursing home, I walk by, they stare at me, and as soon as I’m, say, twelve feet past, they start up their conversation.  They did it at the old building as well.  The people acknowledge that this is being done and complain about this overt gossip behavior, but it doesn’t stop.  I do hear what they say.   It’s nice to hear that I am skinny.  They have said that my thinness makes me unattractive and I admit I love to hear this.  The difference at Alcott was that it was done in a whisper.  In March 2010 the entire unit was a living, breathing teenager whispering nightmare for me.

I guess that is the one single bad memory or searing photographic image that is sitting in the back of my eyeballs and won’t quit in my ears, the whisperers, the sound, the occasional understood word just enough to taunt me and stir me up enough to rise and place myself in the Center of the Universe where I am talked about and talked about and talked about.  It is here in the Center of the Universe where everyone notices everything about me.  I am a scared animal all over again, just an animal and I am back in survival mode.  You can’t trust anyone.  It is here, in the Center of the Universe, where everyone sees me, notices every body part every time it blows up.  It was here in the Center of the Universe where my sixth grade teacher calked me fat.  The whole world was watching that afternoon.

Maybe that’s why they haven’t brought out the microphone yet.  Someone is waiting for me to prepare my speech.

This is not about coping skill.  Living like a scared animal is only a means.  You can’t stay in that heightened state, that sheer survival mode, for very long.  They gave us a handout that stated that the heart can sustain a very fast heartbeat for lengthy periods and that this was built into the heart to help a human run from predators.  But I’m not talking about just my heart.  I came into Walden barely clinging to life.  There was no food in me.  My stomach was empty.  Intestines should have things in them and there wasn’t anything in mine and hadn’t been for days.

What happened there was

I showed up.  I got fed.  I found my Power.

I connected with other patients while I was in there.  God bless you all.

I saw that I now must use my Power to make changes in the world.  I make these changes out of love and duty to myself, to others with eating disorders, and the ground I live on.

My Power has nothing to do with eating, food, or weight.  The hospital did not give me this Power.  I already had it and had been using it all along.  My Power transcends locked doors or any architectural barrier.  I cannot give it to others as I might break a loaf of bread, but I can open my heart, and warm up an entire room.

I began to make world changes right away.  Where something was morally crooked, I straightened.  This happened all around me, not only in single instances.   I focused on separating injustice from misfortune.  I found that there was little difference between bad manners and other types of disrespectful behavior.  I discovered that the value of demanding respect from the world is more than it seems because others are watching and learning from me that they, too, are people of value and should demand respect from the  world.

I left when I had done enough of these things.  I had practiced using my Power long enough.  It was time to use it in the world.

I knew that ultimately, I was all alone.  I have no family.  There was a “family incident”…I think I mentioned it on here before I went in.  Absolutely despicable.  Not the incident, just the fact that they haven’t bothered to call…just haven’t bothered with me.  I told them.  Spelled it out.  Spoke clearly over the phone and made sure they heard every word of it.  Maybe I should just send a certified letter that says, “I have anorexia nervosa.”  Have them open it and read it and sign a paper saying that they read this document.  This would be a great time for them to suddenly develop severe learning disabilities or blindness.  Maybe partial amnesia would be more convenient.

One of the things I had always told the other patients, what I had actually been saying all along was, “It doesn’t matter so much what you eat on your tray in the dining room.  You can eat 100% and eat% and eat 100% but what ultimately matters is not what happens in the dining room, but what happens outside those doors after you walk out of here.”

My stay totaled sixteen days.  I have been out for a week and I still agree with the above statement…100% agree.

No, Walden didn’t teach me a thing about how to eat.  They didn’t teach me how not to binge (as I have just finished ranting and being angry about).  So pretty much I didn’t get help with my eating disorder behaviors.

It was just so shocking to ask a simple question, “How do I stop this behavior?” and to get a completely blank look like I’d asked for them to recite for me the Five Fundamental Rights, the brief document that every staff should know, at least in summary, that states patient rights in inpatient and community facilities where they are quartered for care.

They didn’t know how to tell me how to stop bingeing other than the one method, medication, that works for me.  I can buy a book on Amazon, one of those fad books, and get more information.

This was the bit I got from the nutritionist:  “If you follow your meal plan, your meds will work better.”  That’s weird cuz I didn’t read this on the pharmacy insert.  It didn’t say anything about “meal plan.”  She wasn’t qualified to say what will make my meds work better.  Topamax, the one that helps bingeing, works irregardless of whether you take it with meals.  I think the point is not to starve yourself.

I think the first dose of Imipramine, which I took last night, did something, because already I have the dry mouth side effect.  Fast.  Wow.  I hope more than this.  I just want this nightmare over.

 

 

 

Recovering FROM treatment

I cannot believe this…I keep going over the things in my mind…

wrong, wrong, wrong.

misinformation.

treating me for conditions I did not have.

not giving me treatment I desperately needed.

not meeting standard human basic needs.

denying human rights.

Such bullshit…I did try very hard.