Category Archives: Hospital papers
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:
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.
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.
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.
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.
I also discovered some e-mails I never sent and voice recordings I made.
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.
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
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
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:
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.
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.
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.
I cannot believe this…I keep going over the things in my mind…
wrong, wrong, wrong.
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.
Some comments on binge eating, starvation, inpatient treatment and my life before and after…this is kind of heavy
While I was in eating disorders treatment, nothing was discussed about bingeing. Nada. Zilch.
We’re talking about state-of-the-art treatment. They do state on their website that they treat binge eating disorder, but they don’t address this behavior in the groups or talk about how to stop this behavior. No one talks about bingeing. Ever. The focus is on purging behavior. The staff go to great lengths to prevent patients from purging in the bathrooms after meals and snacks. Patients are watched during meals and I assume that hoarding behavior is generally prevented, because patients are not allowed to wear garments with pockets in the dining room. To accumulate enough food for a binge, at least a binge that is big enough to qualify as the kind of binge that I would do…it would be impossible. There are no drawers and no space to hide items.
I finally inquired about bingeing after I’d been at the Alcott Unit of Walden Behavioral Care, the inpatient unit where I was staying, for over a week and nobody had even mentioned what the heck I was going to do about bingeing once I got out.
Of course, I have talked to you guys a zillion times on this subject and I had told the doctor why I was on, specifically, Topamax and Imipramine. Actually, I have barely had the opportunity to discuss the whole Imipramine ordeal with you over the past couple of weeks…it was beyond the point of toss-up…let me back up and explain….
I have been on Imipramine since November. It is a fabulous drug for binge eating. This is the original drug used to treat binge eating, believe it or not. This research was done by some shrinks in the early 1980’s and was written up and published in a book calledNew Hope for Binge Eaters. I own this book. It is a very, very important book and I am angered, actually angered on a very deeply personal level that the research was dismissed by so many people…maybe because it put therapists out of business or made binge eating using treatment using Imipramine, as some called, in protest, “male doing to a female behavior” which is very bullshit because of course binge eating is not a female behavior and research on “chemicals” that influence brain activity is not done by only males…(this research and knowledge is something that is passed on not only in the pharmaceutical industry but in traditional “folk” cultures and within family units since the beginning of the species and is written in the earliest recorded history). I latched onto this book and after all these years still buy into the notion that binge eating is a brain response. I know this in my gut of guts.
I say this with tears in my eyes, not tears of sadness or joy or anything judgmental on myself certainly, but feelings of observation only. I also say to you, beg of you not to take this away from me or judge me or conclude that this is a bad thing or a sad thing or tragic. There is nothing tragic about it and I am not dying any more than anyone else is dying. I am getting older. Each minute, I am a minute older. So while I am typing this, each letter passes by. So let me establish that before I say the following about my eating disorder and let me say again do not take this special knowledge and experience and love and ownership in my body and soul of my eating disorder or judge me as immoral for saying this:
I have unique knowledge of my eating disorder that no one else has. I know it better than anyone else. I am the only one who has lived with my eating disorder for 32 years. No one else has lived with it. I have lived with it in secret for just about all of this time.
My eating disorder is not a living entity, does not have a gender, and does not and never has spoken to me and I have never given it a name, such as “Ed” or “Ana,” nor does it have a “voice.” Because of its non-entity as living, I have never been married to it or in any kind of personal or social or sexual or abusive partnership or codependent relationship. I don’t talk to it either lovingly or defiantly, ever, or refer to it as “you.”
As a matter of fact…let me say further that those books out there that tell you to think of your eating disorder as some kind of person called “Ed” are completely lost on me. These books sorely disappoint me. It is so…cliche to call it Ed. I mean, how fucking over-used. Even my therapist disappointed me and called it Ed. I told her that in calling it Ed, in giving it a name, a name normally given to humans, I am giving it way, way too much power.
At the same time, in giving it this name, I am acknowledging that this so-called Ed is actuallynotme, that this Ed isseparatefrom me. However, let me state right here that according to the laws of logic, in which I was trained way, way back in high school math class and I think junior high as well, and yes, I was on the brainy side and loved logic and still love logic in all its forms on all levels and yes I do believe in God I feel God in my heart and know that there is a God and to me this makes all the logical sense in this Universe that I live in as I type these words that pass by, letter by letter….according to the laws of logic, just because I do not call my eating disorder “Ed” and just because I insist on not thinking of “Ed” as a person, because doing so would empower my eating disorder..does not necessarily mean that I am integrated with my eating disorder to the point of it being me and my living as it and doing eating disorder behaviors automatically, not by choice. I don’t know the logic symbols for this equation but trust me I am right. This implies a certain largeness of the eating disorder within me to the point of robotic takeover. I did not state this at all.
There have been times that I have felt taken over by my eating disorder on an emotional or spiritual level. There have been times that I’ve felt that my eating disorder behaviors have taken over so much of my time that I have time for nothing else. There have been times that my eating disorder has rendered me unable to do daily tasks or take care of myself on a very basic level. There have been times when I have struggled to stay alive and have nearly died because of my eating disorder.
There have been times that I have only lived due to sheer luck. Some people may say that that God kept me alive. Some people may say that there was a reason for this. I don’t think there has to be a reason why I am alive. I am alive. Did God play a part in it? Does God “play parts”? Did God want me alive? Does God “want” things? I don’t really think God has a “plan” for me. I can pray and pray and pray to have this “plan” revealed to me. But in so doing, what would I expect? A list? Do this, do that? Adam’s wife Sarah wanted a child. God told her to expect one. She was old and well beyond childbearing age. She laughed at God’s plan for her. She bore a child, Isaak, which means “laughter.” I absolutely love this story and I don’t know why I love it so much.
“Plans,” are up to me at this point. Before I was in the hospital, I knew that I would die. I did not merely plan for death. I knew that I would die without question, so I had no future plans for myself. I knew that this would happen very, very soon…within days…it didn’t happen and didn’t happen. I made it to Sunday…then would go back into the dark of the weekdays and disappear, only to re-emerge on Sunday at church…on time every Sunday.
This was my life and this was how I lived it. I am alive now. I have the memory of having lived the way I did for those months. I have the memory of the sensation of my soul walking away from my body, then returning, on a handful of occasions, possibly three times. Yes, three times, I think. These went unrecorded. I did not physically die. My heart did not stop and I did not stop breathing to my knowledge. To my knowledge. I was not asleep or even close to it and I am absolutely positive that this was happening. In my heart I have no belief in an afterlife or no feeling on a gut level that there is an existence for me after death in any way or consciousness or continuance of “soul” as entity.
I had read about this happening to people who were near death. I read it with fascination, mostly because I have this curiosity about death. Many people are curious about death. As for “body leaving soul briefly,” had I ever thought it would apply to myself, I would have thought it might be a bit of a bullshit notion. But I truly believed that in my soul, the life-ness in me, had died, or was slowly, slowly dying, and might as well be dead, and that my body…it was this useless, dry, pale, flaccid thing.
“God’s plans”? Somebody might tell me to pray for God’s plans. I don’t think it’s anyone”s business what I pray for. What I pray “for,” that is, what is uttered in prayer is between God and me and is not up to another person, though sharing a prayer is awesome…that is not the same thing as religious persecution.
I am strong. I am 54 years old and suddenly, suddenly I am so assertive and I have a voice and never in my life have I ever had such power. I am able to speak for myself. I am able to think my own thoughts and think for myself. No one controls my thoughts. I am a writer. Through my writing, I have a voice and I tell my story through written and spoken word. I have a story to tell and my story is worth telling. My story should be told and needs to be told and will not go untold and I will not be forgotten and my story will not be forgotten. I am a person with an eating disorder experience and that experience will be told in words and so that experience will be shared with the world so that others may know what this illness is and is not. I will give other people with eating disorders a voice. I will give people with eating disorders rights and an end to discrimination on all levels and an end to invisibility and an end to ignorance and fear and misconception.
As soon as I entered the hospital, I began to eat. I was surprised that I did this. Or shall I say I was beyond the feeling of surprise and not surprise by anything I said or did, at that point. I consumed a bite of this thing now and then. Please do not judge me. I was not “restricting.” I was not “counting calories.” I was way, way beyond that point. I was extremely weak and at survival level. I was mentally disoriented. All I could do were bites. I focused on what was in front of me. I concentrated very, very hard. I needed to be in the hospital. I say this without question. In the very physical and practical sense, I was completely unable to do this without being in this setting. A person who doesn’t have an eating disorder can argue, “You can do this because you are physically able to put fork to mouth,” but they do not know the actual condition that I was in at this time.
Not only that. I was not “losing my relationship.” I was not “losing my wife and kids.” I was not at risk for “losing my job” or my “reputation.” My problem was not a “feeling of ‘out of control of my life'” and my parents were not kicking me out of the house and therefore I was not knocking on the doors of the hospital out of having no place else to go.
I had no relationship to lose. I had no wife and kids. I had no “job.” I had no reputation at risk. I did not live with my parents and had no family to speak of…my family (mother, two brothers) didn’t and doesn’t give a shit about me anymore, and there was no life left in me to feel out of control of. I called the hospital and asked to be admitted because I had stopped eating altogether and was about to drop dead. I was and am 54 years old.
Somehow, a starving 54-year-old woman got on a bus with barely any luggage, stumbled into a cab, over-tipped the driver, and made her way to the third floor of the Admissions office of Walden Behavioral Care on February 8, 2012, and lived.
I wonder if the cab driver bought a Diet Mountain Dew with the extra money. I wonder if the cab driver double-checked the label to make sure that there are actually zero calories in Diet Mountain Dew. You never know. Sometimes, those labels are weirdly printed, and a zero can look like an eight. When you are 54, you sometimes have to take off your glasses to see how many calories are in things because the print is so small. This can get embarrassing out in public because it looks obvious that you are reading the calorie count on labels. It is a dead giveaway and when I do this in public I worry about strangers suspecting that I have an eating disorder…or thinking “funny” about me or scrutinizing what I buy…like judging me because I don’t buy, for instance, frozen French fries. I can’t believe how many people waste money on frozen French fries. Wow I am having fun with this. On the other hand, maybe the cab driver saved up the extra tip money and put it in a jar, and it went toward paying the bill for his family’s health insurance. Cab drivers have to pay for their own health insurance. I feel sorry for those guys.
So I’m going to swing way, way back in subject matter here. I was talking about Imipramine and bingeing and how well I know and own my eating disorder. I went on to say something that highly relates, and this is that I own the experience of my eating disorder. I own all 32 years. I own the right to tell the story. I own the duty to myself to tell the story. I feel that I am doing others a huge favor by having This Hunger Is Secret: My Journeys Through Mental Illness and Wellness published in paperback at last. I feel that I am doing other people with eating disorders a huge favor to tell the story of my eating disorder. I feel the need not to tell a “recovery story.” I feel the need to tell an “experience story.” I feel that telling an “I lived happily ever after with wellness” is doing the world a terrible injustice. I did not show up at Walden to recover. Duh. I showed up to live. If you have gleaned anything from this article by now, you know this already. You don’t come out of there recovered. You leave and you’re only at the beginning.
I’m going to be straight with those of you with eating disorders right now. At Walden, they did not want me to be straight with people about this. Well, bullshit. Look up the statistics online. You deserve to know the facts. Statistics vary because each organization collects data a little differently, but they will all tell you a few basics that are the same: Anorexia nervosa is the most fatal of all mental illnesses. A majority of people with anorexia do not, I repeat, do not make full recovery. By this I mean definitely fewer than 50% fully recover and no longer struggle with these issues that people with anorexia nervosa or other eating disorders struggle with. The earlier you start, the lower your chances are of full recovery. The longer you have the disorder, the lower your chances of full recovery are. Relapse is very, very common. I believe the “recovery period,” or shall I say average “rehabilitation period” is nine years. Yes, nine years.
The following statistics I did not read in all sources but did read in several sources regarding adolescents and I’m not certain that I am wording this properly so I’m going to be very cautious about how I say it. Eating disorders and adolescent suicide are highly linked. Bulimia is found…I think in 50% of female adolescent suicide attempts. The figures on males are probably difficult to ascertain and I imagine the data is poorly researched and poorly gathered and inaccurate due to gross ignorance regarding eating disorders in men and boys…but I’ll bet it’s also 50% as well. In adolescent suicide attempts the figure likewise for anorexia and binge eating disorder is 30% equally. The figures were not all the same exactly…don’t quote me…but let me say that all the figures were extreme and they were all shocking and they were all very, very clear.
What these figures do tell me now…now…now…is that these kids…these beautiful, unique kids that I met in the hospital need to speak and live and act and think and be their own person and have rights and have a voice and be listened to. Many of them were stifled by their parents and by their friends and by their schools. Many of them were force-fed by society and told by society how to live, act, and think. Most did not have their own voice. Most had lost that voice along the way. Many spoke in a whisper. Many spoke literally inaudibly. Some spoke in a mumble, not due to malnutrition but out of habit. Many of them had taught themselves to be givers and had given themselves to others and not allowed themselves to be loving to themselves.
But I am getting off track of what these figures do tell me. They tell me that people with eating disorders need to have a voice.
People with eating disorders need to have a voice. When I went into the hospital and realized very shortly afterward that I had a future, this weird thing called future, I vowed that helping people with eating disorders have a voice was something that would be in my future.
I am not saying that I am committed to do this. I am not saying that I plan to do this. I am saying that this will happen. Maybe I should add something to this because nobody can predict the future. Nobody. You can’t and I can’t. This will happen if I live to see it happen. And yet I am doing it right now as I type these words, letter by letter.
And so, I have my new book in the works. I am working on it and I am writing it. I have more plans and these I will get into soon enough.
Again, I have drifted away from Imipramine…I got on it in November…as I said, I know my eating disorder and after 32 years, I know in my heart that this “binge” behavior is brain-based.
If ever I am “taken over” by my eating disorder it is during this behavior. I do not plan this behavior. It is pure reflex. It only happens at certain times and is not a response to hunger. It is not a “coping skill.” It doesn’t seem to be an “addiction.” Sticking to a “meal plan” does not work and never has. It has nothing to do with “crisis” behavior. I don’t do it to “numb emotion.” I do not do it as “self-harm” behavior although the English word “destroy” runs through my head while performing this act. No therapy has helped.
Ignorant people, both ignorant professionals and ignorant lay people, have said, “Don’t do it. You probably are weak-willed and need to go on a diet. Just binge on fruit. Don’t take the first bite. Why don’t you just binge ‘a little’ and not ‘a lot’? I wish I had anorexia…I need to lose weight. You are doing it to control your parents and need years of family therapy and day treatment. You obviously don’t have an eating disorder, but are doing this as a way of manipulating your therapist and are trying to get controlled substances from the psychiatrist. You must be lying because I don’t see any weight gain.” I still do hear quite frequently the line, “I wish I were anorexic.” Don’t jump to conclusions on this one. People say this for many reasons. Many people say this because they want to lose weight and say it for very stupid superficial reasons out of ignorance and think it’s fun to be this way and that it’s a disease of vanity and fashion. But many people who say this already have serious eating disorders and wish to “trade” their eating disorder for anorexia and change their weight. I am not one to judge.
So in November I got on Imipramine. Dr. P didn’t tell me the side effects but I read up. Not good. Not good at all. The Imipramine stopped my bingeing so this was good. But immediately my breasts got huge. No eating disorder thinking here they were huge and only two days ago…I have been completely off the drug for a week now and they are diminishing…finally I am noticing a positive change, some size reduction…finally. It was ridiculous and I was so miserable over it, not to mention hormonal danger. I wasn’t worried about breast cancer, just whatever hormones were possibly messed up, this plus whatever overproduction of breast milk was happening.
This plus ridiculous vital signs. Borderline very high blood pressure, diastolic near and sometimes above 90 ALL the time when normally it is either 80 or 70 or so…completely normal…pulse always running 90, generally above 90…this is ridiculous. Risk of heart attack on Imipramine no question…the insert stated that this is doubled. I am not kidding you…risk of heart attack is doubled. This and 1/3 chance of permanent, I repeat, permanent movement disorder. I did not want to stay on this dangerous medication. Just couldn’t. This plus perpetual dry, dry mouth and perpetual thirst. The headaches started when I got on Imipramine and no doubt it was contributing to increased need for water. I am off Imipramine, by choice. I asked for my Topamax, the other med I’m on to control bingeing, to be increased. Unfortunately, I’m at the maximum dose. I’m on Lamictal. Lamictal increases Topamax availability by 15%. I’m on 350 Topamax and the max is 400 so essentially I’m close to that dose considering I’m on Lamictal. Topamax alone might not help without the Lamictal and this I can’t explain fully it has to do with a long history I have…regarding the effectiveness of Lithium for bingeing…etc etc. I ended up figuring out that taking Lamictal at night is by process of elimination and careful examination of my records THE cause of insomina that I am experiencing, so I am moving it to morning. Technically, I need to divide it up into a split dose and I have no clue why this wasn’t done in the hospital. I hadn’t split it up myself before the hospital because I was taking meds by habit and only did them in such a way that I would most likely not forget them.
They didn’t discuss bingeing in Alcott. Nada. Why? I asked. About five minutes of private discussion with the nutritionist and that was all I got. Nothing in groups. This was all I got. All the help I got. No suggestions. Nothing. I guess treatment for binge eating…where is this treatment? Does it exist?
I don’t really know what to do right now. I asked for help and didn’t get it. I am off Imipramine. I binged. It was automatic. I did everything the nutritionist suggested to “help” the Topamax do its thing by using food to help my meds work well. This did not help.
I binged yesterday afternoon. I am bloated still. My ankles and calves are huge from it. My wrists are enlarged and my hands also have edema in them though they are not bubbling or anything scary like that. My stomach is enlarged quite a bit still and will remain so for a long time. Never mind my face…I touched it once for less than a second…that was enough. I am so embarrassed by this that I cancelled therapy. Or shall I say that this is one of the reasons. I don’t want my therapist to know that I binged. She will say, “Told you so.” She will say that I should not have left the hospital, that she was right and that I was wrong and that I am the sick one, etc. I refuse to show up for an appointment with my primary care doctor like this even if it means waiting for a week for the resulting edema and stomach enlargement to go away.
No. I typed something and then deleted it because I thought you would think, “How tragic it is that Julie has not”…I say this with disgust in my heart…”How tragic it is that Julie has not recovered.” Well, fuck you. If I have to fast for a week…yes, I did type, “a week” and I will not apologize for having typed this, I will do so to rid myself of the horrible edema and swelling that has resulted from this binge. I refuse to show up at my primary care physician’s office looking like this and I refuse to show up for therapy looking like this. I am not going to show up if I have to cancel appointments for the next month and a half. And no, I am not planning to fast for a week, simply because I don’t think it’s going to take a week.
No one, no one no one no one no one at Walden told me what to do if I binge. Not one person. So yesterday I was in the kitchen and it came over me. I boiled up maybe six or seven cups of dry dog food and gulped it down. Then I went out and bought food. While I made this trip I was in a complete trance and gobbled up food while I was traveling on foot. I kept the food in my pocket secretly. Well, you have read in my blog many times about these binges and you know how I have lived and lived and lived with this misery.
Not one person told me what to do after a binge. I feared stomach rupture. What is the thing to do? What is the safest thing to do? Should I lie down? On my stomach or on my back? Is it really safe to allow myself to sleep? I generally pass out…I honestly don’t know how much is known about the combination of long-term severe starvation, underweight, and severe, chronic, difficult-to-treat bingeing combined with complete inability to vomit and suppression of gag reflex. How many cases of this do they really run across?
When I was in my thirties, they told me this bullshit, “Go right back to your meal plan.” I immediately canned this idea. They deemed me uncooperative. Obviously, they completely lacked understanding of my disorder and thought that what I was doing was overeating. I was not overeating. I was bingeing. You can’t eat three gallons of ice cream and two large pizzas and finish them at 4pm and then at 5pm get out your freaking fork and knife and eat three proteins, one starch, eight ounces of milk, etc etc etc…it is fucking stupid and illogical and they expected me to do this?
What I need to do after I binge I need to teach myself. Walden provided no answers whatsoever. They did not tell me how to handle it emotionally or on an eating level. I do know that if I resume eating way too soon, I will automatically trigger another binge. It is a brain thing and it can’t be helped. So I know to stay clear of food, any food, for a certain amount of time. Actually, this is not so much an amount of time but an amount of fullness. I have to wait until my stomach is emptied a certain amount so I have to wait before resuming eating. Try to explain this to a therapist. Well, fuck you. I know my body and I know my brain after 32 years of dealing with this. I have learned to save myself from yet another Hell.
But…I do need nourishment. I have to evaluate this situation. I have some serious thinking to do. I am not going to show up at my primary care doctor’s like this no way, even if it means canceling for a month. Even if it means canceling for six fucking months. I refuse to show up at therapy like this. I refuse to be weighed like this.
I refuse to be weighed at a weight that is elevated due to bingeing. I will tell you exactly why. The time I went to see my primary care doctor…this I explained to you out loud but I will tell you again. I had just binged the night before. She weighed me. She said, “I want you to stay at this weight.” I was at the time ten pounds heavier than usual due to the binge. Well, fuck you. I fasted and within an extremely short period, like about 24 to 36 hours or maybe 48 hours, I lost all the weight. I told her in the office, “What you are weighing is the food in my stomach, the crap in my intestines, and water weight.” She said, “I can’t believe you have ten pounds of that.” I said, “After 32 years, I know my body.”
After 32 years, I know my body.
I know my body more than you do. I know my body better than any doctor or hospital. I know my mind and my eating disorder better than my therapist does. I have lived with this disorder, this unique disorder that I don’t think these treatment centers see very often, and no one else has lived with my disorder in my body for these 32 years so no one knows is and knows what it feels like to be me better than I do.
It is not your place to judge me or make conclusions based on my eating behaviors as to the extent of my so-called “recovery.” It is not your place to pass moral judgment on me. I made a stern statement while in the hospital that how and how much people were eating in the dining room said nothing about how hard they were trying or what their attitude was or why they were there. This hit hard but I had to say it. Please, dear readers, do like they did in the dining room. Keep your eyes on your own tray and I will keep my eyes on mine. I will write in here about my life, though, and give you a window, a peephole, into it. I hope you enjoy my peepholes. I enjoy pecking them out.