My First Impression of the Alcott Unit at Walden Behavioral Care, Waltham, Massachusetts, USA, “eating disorders treatment”
I wrote this a while back. I found it in my files. I found it just now and am posting it. I did very little editing just now, only to eliminate or substitute a word or two for the sake of others.
My First Impression of Walden’s Alcott Unit
by Julie Greene
written July, 2014
I am a 56-year-old woman and I was 52 at the time of my first admission to Walden’s Alcott Unit. I believe the date that I phoned the Admissions office number was my fifty-second birthday in January 2010. I recall that the psychotherapist I had been seeing at the Edinburg Center, [name omitted], LMHC, had instructed me to telephone the main admissions number of Walden to see about getting in. I wasn’t happy about this at all, but at the same time, was rather curious as to what this “eating disorders care” was all about.
It had been nearly 30 years of suffering with an eating disorder, yet I had never been treated for it, certainly not at the inpatient level. I’d first gone to “therapy” and found that no one knew anything about eating disorders, and some “therapists” hadn’t even heard of ED. I’d been to OA and it never “worked.” I’d been to “groups” where I couldn’t relate to other members. I was even told you couldn’t die from an eating disorder. I was told I was exaggerating or “faking it.” Then, in February, 1983, I was in a hospital hoping someone would listen and at least care, when I saw on the news that Karen Carpenter had died of anorexia nervosa.
I tried to tell the nurse. “Look, that’s what I have. Anorexia. Something like that.” But again, I was ignored. Given pills and sent along my way.
A year later I realized the doctor I was seeing had lied. He’d only taken money from my parents. He knew nothing about eating disorders. That’s when I took an overdose. This was a few days before my 26th birthday. The doctor’s name was Thomas Alkoff, PhD, and his associates were the psychiatrist Carl Burak, MD and the psychologist Ronnie Burak, Carl’s wife. All three left town a few years later following multiple scandals, including the suicide of my friend Diane Daw (Manchester, VT) and the tragic death of Bennington College freshman Libby Zion. There were many others. The next “doctor” I saw, Charles Capers, MD at Gould Farm, didn’t even have a license to practice medicine. To get me onto SSDI, he pronounced me “schizophrenic” rather arbitrarily. I’ve had to live with the fake diagnosis “schizoaffective” ever since.
In 2010, I had a therapist who really was trying to help and really did care. She said I needed to eat. This was her main concern. She said Walden was a good place. So did my psychiatrist, Dr.Kimberly Pearson. Yet I was aware that there was always considerable strain between these two practitioners, though they tried to hide this from me for the sake of keeping professional distance from me.
I recall making the first phone call to Walden. I had already e-mailed with my circle of friends who were my age. These were women friends I knew online. Sadly, none of them are friends anymore. This is what happens when you are afflicted with anorexia nervosa. However, these friends were all in agreement: Julie needs this “Walden.” I phoned and reached a man named Brian. His voice sounded soothing and kind. Every time I called, Brian answered in his melodious voice. I told myself that he must calm the very young and frightened girls who call for the first time with questions, and calm the crying ones.
Brian asked me many questions, which I answered to the best of my ability. I thought: wow, this place must be state of the art. I’ve never been asked these questions before! No one has even cared! He asked me if I starved, and how much I ate. Usually when I have entered a mental hospital all they wanted to know about were suicidal intent.
That’s how it works., though, with hospitals. The admissions people such as Brian are the first ones you meet and you assume they represent the hospital. You are totally convinced that these organizations care about you, based on their “front” people, their PR dudes. Brian has tact and he’s smooth-talking. Their website looks nice, too. As does the website of any mental prison. I have my own website and I have designed many pretty ones and ugly websites, too.
Brian asked about height and weight. I am five foot one and was rather thin at the time. My highest weight was achieved because I was coerced into taking the drug Seroquel. I weighed nearly 200 pounds. My lowest weight was 78 last summer, as I weighed myself the day my kidneys failed. I have photos of myself at my highest and lowest weights for history’s sake. I think if I had allowed my weight to drop further, I wouldn’t be writing this now.
I am alive, however, because I walked away from psychiatric abuse. I am alive because a I refused imprisonment. I am alive because I refuse to go to one more so-called “hospital,” and I have been to many. I am alive because in the end I refused mental health care. I know the difference between “care” and “abuse.” I am alive because I recognized that beyond a doubt, my eating disorder is not a disorder at all, but a set of inherited nutritional traits that was passed on in the bloodline. My mother went through the same ordeal without any such imprisonment from the ages of 14 until 16 and never saw a therapist nor specialist.
My mother is right now in a nursing home in Johnston, RI. If you go see her you will notice a few things. Go eat with her. I have never been there myself but I’d love it if anyone would do this. With a variety of food in front of her, she will act differently around the dairy food. I guarantee this, and yet she and I have never discussed this openly. [note: my mother passed away August 12, 2015.]
Dr. Greenblatt, who runs Walden, was spot-on in his book, that eating disorders should be solved with nutrition, not by locking kids up and abusing them. However, Greenblatt sold out, clearly. I find this heartbreaking.
I arrived with a large suitcase at the appointed time. I had read that it was okay to bring a cell phone and I had traded mine for a used one that didn’t have a camera. I had my knitting with me. I was working on a sweater for my little dog, Puzzle. Now, neither knitting nor cell phones are currently allowed, as the rules have changed. I came by MBTA bus. I asked myself if this be the End, this anorexia? I told myself to quit thinking like that.
Well, this was what I needed, wasn’t it? My friends would approve, wouldn’t they? I would get super advice and learn a whole lot of new things about eating disorders that I had never learned in three decades that I had been bumbling around with a bunch of psychotic people. And after all, I wasn’t even psychotic. I “needed” this care, supposedly. You’d figure these Walden folks were the experts. How could I know anything? I was only a sufferer.
Hell, no. Those of us who have been through the disorder know far more, because we are the ones that actually go through it. Those with book knowledge only know only what is in books, and the books have it all wrong. I was going to find this out, rather shortly.
The admissions process was lengthy. I know the word, “cozy,” is overused, but that seems like a good one to describe the Walden office, their “front” for allowing inductees into their fold. I had to fill out questionnaires and was interviewed. I got weighed in a paper johnny. How many others never forget those paper johnnies. Funny, though, you can drink as much coffee and water as you want before you get weighed, but you can’t sew a ten-pound brick into that johnny. Don’t worry, as soon as we get admitted we are all on the identical meal plan anyway. It’s called Chicago. Once you have been there a couple of times you have Chicago memorized. It’s not too different from the standard diabetic meal plan, made of so-called “exchanges.”
Greenblatt’s book tells us we get extensive testing. I had nine tubes taken in their admissions office via the Newton-Wellesley ER, but this test cost Medicare$2,000 and nothing was done with the results any of the times I was there. Greenblatt states in his book that patients should be neuro tested for what psych meds will work. I don’t think such state-of-the-art testing is ever done at this facility on anyone, or if such testing even exists. Some patients get zinc and some don’t, but it seems arbitrary to me. In fact, most of the nurses tell the patients the vitamin supplements are “optional” and “not very important.” Most nurses also don’t understand why they are given, if you ask them. They seem to be rather heavy-handed, on the other hand, and insist on bossing patients around, ordering them to “group” or telling them when to go to bed or that they need to stop talking about certain subjects. Patients are often threatened and told their socializing amongst each other will be “staff monitored” if they cause any trouble.
I did get tested by a neurologist during one of my five stays at Walden, by a real neurologist. This was to see the extent of the damage caused by self-starvation I asked the nurse practitioner, Deb, to tell me the results. She said, “I cannot read his handwriting.” I questioned her further but she put me off over and over. I was unable to get a straight answer from her.
I was allowed to be admitted to Alcott following the nine-tube, expensive blood test. I felt weak. I was guided to the unit and helped with my luggage. I wanted to sit down and rest, and I was thirsty, too. We had to follow endless hallways and open many doors. So many confusing elevators and beeps and buzzes. I wondered what this place would look like. I hoped the people there would be kind at least.
We arrived at the final door. The hallway turned and then, I saw the doors to Alcott. “This is it,” the admissions person said.
“Is it really named after the author?” I asked.
“I believe so.”
I said, “I am a writer, too.”
We arrived at the locked doors. “Here we are at Alcott.” She let us in.
Here was a hallway not much unlike Three East at Newton-Wellesley Hospital. Oh my goodness. My heart sank. Another psych unit. No, this couldn’t be.
I felt so tired. Someone guided me to a chair. I knew I was right by the nurses’ station. I saw the old familiar wite-out board. Patient names with only a letter for last name. Confidentiality, they say. And those doors had clicked locked behind me.
I gripped the chair. I said, “Wait. This is a locked unit?”
“Yes, Julie, this is a locked unit. We have some paperwork for you.” My heart sank another few notches as a staff person got out some old familiar-looking papers. That ole CV. Conditional Voluntary, it’s called. That means you have to sign a special paper to get out, and to get out of this prison, it meant waiting three days. If you don’t pass a judge’s decision, you can be locked up a good long time.
“Let me explain this to you,” the counselor began.
I said, “That’s a three-day. I know those. If I don’t sign in, I can be committed.”
“I would recommend you sign this, Julie. Don’t give us any trouble about this one.”
Soon, it was time for 3pm snack. I couldn’t believe that much time had passed since my arrival at the admissions office first thing that morning. I didn’t want to eat. I wanted to stay thin forever. If only I could leave that place!
I realized that everyone goes through this, this very moment of saying, “Why the heck did I agree to this. I’m stuck here now!” How long would it be? Weeks? What would happen here? The patients didn’t look happy. Instead, many were holding their bellies, as if they had stomach aches. About half the patients had tubes taped to their noses. The tubes appeared to go deep into their nostrils and were taped to the outside of their faces. Before long, the slurpy sound of liquid rushing through those tube feed pumps would be the sound of my life.
Many people shuffled into the dining room. Obligatory snacks had been distributed in a cramped dining room where we all had to eat together. We also had to drink either milk or juice. I was shocked at these snacks. I looked for the one with my name on it, “Julie G.”
There sat a package of Lorna Doone cookies and a big glass of milk. I sat there with those cookies in front of me for a long time. I looked at the other patients. How could they stand this? This was food slavery. I didn’t enjoy the sound of crunching. Someone began a game of 20 questions. I felt insulted to play a kiddie game.
My body wasn’t accustomed to eating this type of food. I knew one package of Lorna Doones wasn’t going to hurt me or poison me. Of course not. But still, my stomach hurt afterward. My friend wanted to speak with me to find out how things were going, so I phoned her following snack time. There was no private place to sit and talk, so I sat in the living room area where many others were seated.
My friend was home and picked up the phone.
“You ate what? They gave you Lorna Doone cookies? Not something healthy like nuts or something? Or fruit? Maybe an orange?”
“No,” I told my friend. “All packaged junk food. You have to eat it and you can’t complain. I feel really awful and my stomach hurts.”
“I really thought they would be more sophisticated than that.”
“Maybe they are just doing it cheaply. Anything to see to it that we gain weight as fast as possible.”
Suddenly, I felt a tap on my shoulder. It was a staff person. I knew this because he wore a badge with his photo on it. He said to me, “Julie, you cannot speak to your friend like that. We don’t allow this. You cannot say these things. You must hang up now.”
I turned to him and said, “Why?”
He said, “It’s triggering to other patients.”
I knew this was bogus, though. They only didn’t want patients speaking to anyone on the outside about “care” or lack thereof. It was the same in any mental prison. I felt trapped. I excused myself from my phone conversation. I realized, though, that Alcott wasn’t going to be any different from any other mental prison.
I am finding that after three and a half decades suffering horribly from severe eating problems, after my bio family has been torn apart, after I have lived for decades in poverty, after my chances of a career have been stripped, after I have no chances of ever having kids or raising a family of my own, after my own public reputation is ruined, after my brothers have denied me the privilege of knowing their children and raised their kids without Auntie Julie, and now, since I was threatened with forcibly being drugged forever and permanently locked up, saying goodbye to the USA for good….Well, heck, it all could easily have been solved within the first year nutritionally, perhaps eliminating certain foods from my diet, eating a good source of Omega-3, taking some vitamins., and never, ever setting foot into the halls of “Mental Health Care,” nor any hospital, ever.
I spend quite a bit of time laughing over it all lately. Yes, looking back and laughing. Psych abuse gave me a darned good sense of humor. If I had my way, I would tear down every mental prison ever built.
Perhaps one wall would remain standing. Let’s call this the Wailing Wall. I saw one such wall, when I was 19 years old, when I traveled to Jerusalem, the last wall standing of the Temple the Jews had built.
I suppose that one wall would remain for history’s sake. I can imagine right now standing before such a wall made of stones. Papers stuffed hastily between the stones by visitors. At 19, I was an ambitious and promising young college student. I wondered what was written on these papers. Were these prayers to a deity? Or messages honoring those that have passed and are now gone? Or something else?
I remember my first time at Alcott. I remember a staff person came into my room one day and asked me how things were going. All at once, I burst into tears, saying, “I hate those kids.” She was rather shocked, and asked me why. I told her, “Because all they do is gossip. They gather in clusters and whisper like a bunch of junior high kids. I am old enough to be their mother or grandmother and I don’t belong here. This place is for children and I am not one.”
After a time, the staff recognized that what the kids were doing was harmful to those that were left out of the childish gossip and whispering. They got us all together, and asked the whisperers to stop.
The kids didn’t stop. The staff did the same thing again, another lecture. This time, they said if the cruel gossip didn’t stop, they’d listen on to all our conversations and monitor us.
This is a chronic problem wherever immature teens are gathered. It’s my understanding that the problem persists to this day at Alcott and was never solved. I know other older people who have been sent to Alcott who tell me the same thing, that some kids are okay, but many are cruel. They leave certain patients out of their childish clique, and those left out are targets of gossip. Older patients have told me they were called “Grandma” and laughed at.
I have no clue why I ended up being friends with any of those kids outside of Alcott. But I had it in my head that since they also had eating disorders, maybe it would be okay to be in a “group” with them on Facebook. Didn’t we have something in common? I felt that since I had no family of my own, I would think of them as family. This was a big major mistake on my part to think that any of them had grown up.
Nothing was any different. The gossip is just as cruel outside as in. If not, worse, because the Facebook venue encourages cruelty.
I do have friends who have a history of being in mental places, just like me. Sure we “compare notes.” Who wouldn’t? We might recommend a particular place or recommend against it, or discuss various ways to deal with certain problems, such as “the holidays.” In my note-comparing, I’ve heard all sorts of stories from people.
Here’s one: I’ve had friends, a number of people I know, who complained that a doctor “diagnosed” them based on talking to them for five minutes. They said it was demeaning. They said, “How can this person declare I am [bipolar, or whatever] if this person is barely listening? I felt insulted.”
I wonder, though. It seems the immature kids I met online who were at Alcott seem to do just the same thing as a form of cruel gossip. These are kids I don’t know, have never corresponded with nor spoken to nor messaged with. They are so mean that they decided to “diagnose” me based on one Facebook post. They are gossipy and cagey about it. They think they are so hip and cool to use shrink terminology. I’m not impressed at all. I know better than to “diagnose” anyone, cuz I know just how harmful diagnosis is.
Of course, all kids go through their “pretend shrink” phase. I went through it briefly in high school but decided that game wasn’t for me.
The cruel gossip goes on and on. I think those kids, if they love their “treatment” so much, should go right back to Alcott and continue their petty social life there. After all, that’s the main reason most continue to get readmitted. I think it would make them happy for all the pals to be together. Don’t they say they miss each other so much?
Those kids have all the Alcott patients as Facebook friends. In fact, the only friends they have are former Alcott patients. Ever notice how they keep ending up back there? They just won’t grow up. If they want in-person contact, all they have to do is make themselves sick, and get admitted. Then, of course, it’s party time all over again.
I wish I never had been put there. But then again, going to Alcott made me realize just how NOT to go about things. I learned how NOT to get well. I learned that this is a place where reasonable adults pick up childish habits, and become immature themselves. The bad habits are hard to shake. Meanwhile, while these kids have great fun together gossiping away, the Walden money-making racket milks their insurance dry. Very few seem aware of the larger picture.
I don’t blame the staff for being frustrated, nor do I blame the more mature patients for being totally disgusted. Forced care doesn’t work, and never will. In fact, if it’s forced, it’s not care.
Some clarifications about my memoir, This Hunger Is Secret, and my dedication page to the patients of the Alcott Unit, Walden Behavioral Care
Some people are scared to buy my book, This Hunger Is Secret because they are scared it will be a “painful” book. This is a bunch of baloney. It’s a book like any other. It’s writing. Literature. Pain is a medical issue, or if someone has a personal gripe with me, this person should approach me directly.
This Hunger Is Secret is a beautifully written book. It contains a lot of scenes and dialogue and description and the book is deeply spiritual.
I am aware that my book, This Hunger Is Secret uses the term, Mental Illness in the title. I am a believer in history and This Hunger Is Secret is a piece of my beloved history. I highly cherish my life and my memories. For decades, I used the term mentally ill to describe myself, and just because I now find this terminology offensive or other may be offended, doesn’t erase the fact that this history exists. This book is NOT antipsychiatry. It is a just a book. It’s an account. That’s all. It’s memoir, and it’s not “painful,” for chrissake.
I am now, since well after the book came out, OUT of the mental health system. I see no reason to change the manuscript to suit anyone’s whim, including my own. At one point, I added a dedication page right before the paperback version came out. This was the additional dedication page. Know who I dedicated it to?
The Alcott patients. That’s right. Go look. The Alcott Unit is at Walden Behavioral Care. I love you all so much that it’s right in there.
And at the bottom, my instructions,
“Never, ever shut up.”
I want to make something very clear. I was rather determined to get that page in there. I traveled to London in the summer of 2012. Maybe you know this and maybe you don’t. I was there roughly a week. I met with my publisher. I was determined to get the paperback signed and off to the presses before…..
Yeah, I wanna tell you one thing. This was a Friday in July. I was there at the Chipmunka offices in London, at Canary Wharf, with Jason and his two top brass. They told me, “Well, we don’t really have time, maybe you should return to the USA and we can do the signature via e-mail.”
But I knew better. There wasn’t going to be a “return to the USA,” was there? I didn’t know what to say at that moment, how to convince them I needed to do this signing NOW. I had to. Otherwise, it would simply not be done.
This was Friday. My plan was to kill myself later, probably within hours, or by noon or so the next day I’d take the pills I had. I felt like a jerk. Being pushy saying I really wanted to get this signature done in person….And dishonest, too. I usually slap myself for being too honest. Now, hiding the Big Truth….it seemed so fake. I hated myself because my publisher was so kind, really, to do this for me.
I signed those papers. The back cover ended up not having the blurb on it that I had intended, but that’s okay. The fact that it wasn’t the right one reflects my rush to get this done. For sure, had I not been rushed, I would have noticed. It hardly matters. I am me. I was REALLY NERVOUS!
I went back to the hotel. I didn’t kill myself.
How I ended up at Alcott…it was all a joke and the staff provided precisely nothing, no care, no answers to anything. The other patients were great. I begged those staff for help, though…I was sorely disappointed. I found that the other patients seemed to know more about ED than that staff, but the staff discouraged us from speaking directly about our eating disorders with each other. The whole imprisonment there was so ineffective for me.
Still, the whole time I was there, not one person knew about my planned and failed “suicide” in London. I did try to tell people but the staff made excuses not to talk to me, or walked out of the room saying they had a meeting or their pager went off or they were so, so bored with me…one even nodded off! The groups were places where we were treated like children. There were just no answers at this “great” eating disorders hospital. The answers had to lie elsewhere…..
So I managed to get out of Alcott. It was my last day. I knew the paperback would soon come out. At least that. I wanted the patients to know how much I cared. So I decided to reveal that my dedication page was for them, for US.
I had no clue what would happen to me after I left Alcott. I didn’t have intent to harm myself, but then again, I had no clue if my eating disorder would wipe me off the map, either. So, I went into my Last Supper, which, in fact, was lunch at Alcott.
They were playing their usual lunchtime game: Trivial Pursuit.
I read to them my dedication page. I stood and read this page in front of everyone. But they didn’t stop their Trivia and listen. I tried to finish…The staff were rushing me out, telling me, “Are you done yet?” They weren’t even listening, far too bored.
I left what might have been my dying words, my instructions to the kids at Alcott,
“Never, ever shut up.”
Two years have passed. My little dog, Puzzle, is here with me. I have with me in South America a copy of my paperback. I brought with me the signs I carried to protests and to the NEDA walk where I stood outside as a nonparticipant. On these signs is that same slogan. I brought little else.
Oh no. I was duped. Alcott agreed to build those walls around the phone and they simply didn’t. Not one word was said to me otherwise, so I assumed there was a phone booth there.
Guess what? There was never a phone booth. Never. I was told something…maybe just to shut me up about “rights” and get them off their back.
Oh, in the meanwhile, my psychiatrist tells me “patient rights are trivial.” Please. Tries to force drug me, telling me, “I am giving you this pill so you will stop writing.”
They hoped their lies would work. Maybe, if they were lucky, I’d shut up. Or be so medicated into a zombie-like state that I stopped writing and wasted my time in “coping skills” groups all day long instead. Sorry, dudes.
I’m not so physically sick that I can’t write. I don’t waste my time in “programs.” I’m going to a class tonight and I am planning on going to a protest on Friday. I’ll be talking to lawyers on Wednesday. I write letters and I communicate with others that are also speaking out against inhumane care. I’m arranging to work with a writing coach to help me with my new book. Someone who can help me build an outline and work on time management now that my body works differently.
I’ve got ideas…new ideas….I come up with great ones and not so great ones all the time.
So, Alcott, you WILL build that soundproofing…..the battle continues.
Well, dang! Remember I won the human rights complaint and got those soundproofing walls built? All this time, I assumed the walls were still there.
Turns out, Alcott did build the walls around one phone and not the other, which was I guess the agreement. I said fine, but what they did was tricky…. They did build the walls, then as far as I know, by APRIL they were taken down. This means I assume they were up in January, and….geez, did they even have intention of KEEPING THEM THERE? Or was this for show?
From all reports I hear, and from actual evidence (no, I haven’t seen the unit) there sure ain’t telephone privacy now.
I’ve been in the system long enough and I’ve had it up to here. Who will listen to someone with the label “mental patient”? But I’ve been there, I’m intelligent, I’m educated (master’s degree), I’m published, and I know what I’m talking about. When someone with this label, with a “diagnosis” reports a crime, this person gets discredited, the courts and the police say, “Hmm, this person may be psychotic, making it all up, exaggerating, trying to get attention,” and the case often gets dismissed. We all know this. That’s why when someone with a mental health history gets raped or assaulted or abused, the criminal gets off free. No one listens. No one believes. No one cares. To shut the patient up, if the patient keeps talking, the patient is given drugs, or shock treatments, or he or she is locked up, and often forced to live in poverty, with no voice. The abuse continues. The mental patient’s story goes unheard, the mental patient dies a lonely death and gets buried by the state in an anonymous grave.
Does it have to be this way? Does this have to continue? Do we have to remain unheard, unseen, unnoticed, invisible? Dammit, no!
This is gonna be a bit of a winding story, and I hope I don’t fall asleep while writing it and have to can this blog entry. That happens to me all the time, so I gotta keep writing and not fall asleep mid-sentence or anything. I live in never-never land, exhausted basically, midway between sleeping and being awake. That’s cuz I have an eating disorder. I’m on Medicare and Medicaid, which means “care” for my eating disorder is more or less nonexistent. But never mind that. I’ll get to that part.
So sometime last spring I think it was, I went to see a therapist at the Edinburg Center……..This lasted one session, and I’ll tell you why. Her parting words to me, or near the end of the session, she said to me, “You’ll never get better. Do you want to come back?” Now, do you think I was supposed to have faith in this therapist? She was terrible, anyway. I made another appointment but decided right away I had no intentions of keeping the appointment, and didn’t. I know the only reason she took me on as a patient was cuz she heard through the grapevine that I keep my appointments and don’t cancel. Now these therapists get paid if the patient shows up, and if their patients cancel, they don’t get paid. So it’s worth their while to get patients on their rosters who show up. That’s why she wanted me. Money in her pocket. I did get one useful bit of information out of this one appointment. One useful fact, that I kept with me. Not therapy, mind you, this lady knew nothing at all about eating disorders, but she leaked out a miscellaneous fact about something local going on with CBFS that stuck with me.
Now CBFS is the poor excuse for “services” that DMH, the Department of Mental Health, is doing here in Massachusetts. They have “workers,” whoever these people are, coming to people’s houses and supposedly “helping” them. These people are supposedly trained. I think the main requirements to be a CBFS worker are a driver’s license and a reliable car, and I guess a cell phone. Willingness to go to clients’ homes. Once these folks have the job, they are working for the state, so they got job security. Very very very very good job security I’m sure.
Now let me back up a bit. People who have the label “mental patient” end up referred to CBFS by their therapists or doctors or whatever. These therapists think CBFS is going to provide some “help” for the patient. Maybe help getting into suitable housing, for instance. Or help getting a therapist. Or reminders to take showers or to take their meds. I have no clue, cuz none of this was done for me, and none of this applies to me. My therapist, M, back in the winter/spring of 2011, got me CBFS cuz her sinister goal, in the back of her mind, was to uproot me from my home and put me in the state hospital or a group home. She thought that if I had these CBFS services, all the state hospital paperwork would be all the much easier when the time came for the “transfer.” In fact, if you have CBFS, transfer from a community hospital to the state hospital is a lot quicker, smoother, and less messy…she right. I escaped the state hospital later in September of year by the skin of my teeth. All done behind my back.
So the next March I dumped M. Saw right through her. This was very empowering to say the least and I don’t want to get into all the threats she heaped upon me and all about my rocky relationship with her cuz I don’t want to bore you. That’s for another blog entry. It took a long time to heal from her. I think anyone who has had a truly manipulative therapist who plays games with your head, in whom you originally had a lot of faith, and then she turns out to be bullshit….You know how it feels. I was crushed. I needed validation. Someone to tell me, “Julie, you were right and this lady was out of her mind.” I got this partially when I found out from another patient of hers that she had threatened this patient. I feel so bad for this patient, so bad that this happened. So I am not alone. I am not crazy. I was angry, angry, angry all last spring, angry at M….I lashed out, and no one really understood, either, cuz no one believed me, who’s gonna believe a lowly mental patient? The practitioner must be right and the sick mental patient must be wrong, right?
I got on waiting lists and couldn’t find another therapist cuz I’m on public assistance, this Medicaid and Medicare, and no money. I didn’t know you aren’t supposed to say certain keywords that turn therapists off and make them say no and lie and say they can’t take you. You don’t say you’ve made a suicide attempt ever, ever in your life. You don’t say you’ve ever been hospitalized. You don’t say your family has abandoned you. You don’t say you have no money. You don’t imply you’re anything they might define as “in crisis.” You don’t tell them your height and weight (if like me you have an eating disorder) no matter what it is or how you feel about it. You don’t tell them you’ve been labeled “treatment resistant.” You don’t tell them you have any sort of medical condition whatsoever, no matter how minor, no sort of medical risk is involved, you’ve never ever considered suing a practitioner, you’ve always had very good relationships with your practitioners, right? You’re an easy case, you always show up, and you’ve got money behind you. Lots of it. A rich uncle, assure them of this. You’re quiet, clean, cooperative, an easy, neat fix. Then, they’ll take you on, you’ll get a foot in the door. Yeah, it shouldn’t be this way, but the world sucks, folks, the system is crooked and full of liars and excuse-makers and most of them have dollar signs in their eyes.
So back to this therapist at the Edinburg Center. I know I’m skipping around…bear with me. Like I said, I only had one session with her, but this is what she said about CBFS. She said Team 2 of CBFS was real screwed, they were neglecting patients right and left, and that there was trouble going on. Patients weren’t being seen, she said, and I was not the only one. There were huge gaps in “care.” Bad neglect. Patients were going for months and months and nobody knew their whereabouts, what they were up to, or even if they had homes or were taking care of themselves or were seeing their practitioners or if anyone cared about them. So I left the session with this therapist, telling myself at least it wasn’t an entire waste cuz I got this fact, this useful piece of information. I thought about the CBFS worker I had, hmm, need to give her a fake name I suppose….well, let’s just call her CBFS worker #1. She was lazy and unreliable. I had heard about her through the grapevine let’s say, known to be unreliable. Worker #1 was generally an hour late if she showed up at all. This drove me nuts as I myself have a history of timeliness. When she did show up, she often spent the time here at my home yapping on her cell phone with someone, often for ten minutes or more, right in front of me. It wasn’t like she was trying to schedule another client, this was a friendly call to her brother or whatever, just chatting away. Once she came and when I answered the door, she stood at my doorway, talking on her cell phone forever, not yet done with her conversation, before finally, finally, finally, she hung up and came in with barely an apology. When she called me, she never ended the conversation with “goodbye.” This drove me nuts, too. She clicked the phone and it would be dead. It was a trivial etiquette matter, but I never knew that our conversations were over except for the click. When she showed up late, she’d say she had an emergency, but I knew it was a lie, a lame excuse. If she was very, very late, she’d call and ask, “Are you okay?” meaning, “Do I really have to come, or can we just not bother this week?” No matter how starved I was (not that she knew anything about eating disorders, she didn’t) I’d say, “Yeah, I’m fine, forget it,” cuz I didn’t want to have to wait another couple of hours for her and maybe she still wouldn’t show up, not that I really benefited from these visits. So one day she announced that she was going on a six week vacation, at least six weeks, never mind where she was going, but far far away. I was glad to be off the hook and not waiting around for a no-show. She said, “If you need ‘help,’ call the office.” And off she skipped on her vacation.
At some point, I had some “talks” with her boss. Now mind you, this guy was as flaky as they come. Of course, you guys already have guessed this, poorly managed, etc etc, means this organization is run by someone flaky, right? He has been over my place a few times. Acted like he was God’s gift to mental health sometimes, you gotta be wary of those types. Well, I’ll tell you what he said. He said he was like some kind of DBT genius and knew how to do this type of therapy real good. Naw, you ain’t God’s gift to this DBT bullshit therapy, mister. DBT is stolen from Buddhism, get real. The workbook is horribly insulting and offensive. So anyway, I let this fake god bit slide. He calls me, says he’s gotta come and do some paperwork. He comes, has no papers. Now I define paperwork as papers or forms. Every time he comes here and says he has paperwork, there aren’t any forms, he takes no notes, no papers, nothing to sign. He yaps away. If the weather is cold, he comes with his coat on and doesn’t take off his coat. Now when someone comes over like that, I keep my heat way up and they stay all bundled up, they appear on the defensive. One time, he had his briefcase sort of up crossed over like it was protecting him, like a shield. Body language says a lot to me. So he says, “We don’t really know what to do with you. You do your ADL’s. You shower, so we can’t get after you to take a shower. You keep the place clean. You have Internet access. None of our clients are even interested in the Internet. Oh, by the way, I gave you Worker #1 deliberately because she knows nothing about eating disorders. I didn’t want anyone to ‘fix’ your eating disorder, see? I wanted someone no-nonsense. Worker #1 is no nonsense.”
Yeah, I thought, she also doesn’t show up.
I remembered back to Worker #1’s first day. We talked about my schedule. This was the only day she did what I might call some “work.” She asked to see my calendar. On the calendar are things like church, a knitting group I used to go to or hope to go to, and so on. She glanced at it, and then she asked (really, you guys are not going to believe this….)
“So, which days are you going to take a shower?”
So my jaw right then and there dropped to the floor. Really you had to be there. I wish I had a camera and I don’t know what that camera should have been focused on, the look of disbelief on my face, or Puzzle laughing her fool doggie head off at the absurdity of the situation.
Worker #1 was probably thinking to herself, “Gee, let’s make sure Julie showers at least two or three times a week.” Or whatever.
Well, I replied, “Ahem, I take a shower every day. Showers don’t need to be on my calendar.”
So I could see Worker #1 was breathing a sigh of relief, telling herself her job was easy from then on in. That is, she didn’t need to do a thing. Just show up here, well, maybe show up, yap away, and then leave. That was basically it. So sometimes she showed up, always late if she did show, did nothing but yap, then left. Then her vacation. She was supposed to be back one day in January, and of course, she was not. The next week came, no show. Then all of a sudden she was mysteriously out on sick leave. Before her return, I insisted on a new worker. But meanwhile, I knew there was a lot of neglect going on. I have heard from many patients that their workers are lazy, don’t show up, come late, do nothing, care more about their ipods than their jobs.
But I was wondering, what is this “service” supposed to do? These people have done nothing. Me, I mistakenly thought occasionally I’d get a ride to therapy or the doctor’s if I had a freak injury such as a sprained ankle. Once I had a hurting leg, suspected blood clot, and I asked if I could get a ride to the doctor’s and they flat out refused. Of course, if Worker #1 was giving me the ride, she was so unreliable that I’d end up late to my appointment anyway.
So meanwhile, I go neglected and without “services” for months because Team 2 flakes out. I can’t recall when it was, maybe June of last year, 2012, I wrote a scathing e-mail to this flaky boss. In this e-mail, definitely something I should not have written, but remember, I was hurting wicked from that therapist M, mind you, lashing out at everyone, all alone, very isolated, no one believed me or validated me about her abuse (people do now, though)….So anyway, I wrote him a scathing e-mail and clicked on SEND. Said I’d go straight to the DMH and report what was going on. Now remember this: I’m not typical of their patients. Their patients don’t have Internet access, he’s told me this. I’m one of the few. So they don’t have access to stuff at their fingertips like I do. I really wasn’t thinking…and didn’t hear a word after that about my e-mail. No response. No acknowledgement. But there were indeed consequences.
So meanwhile, he’d just transferred me to a new worker, assuring me that she was his best. Let’s call her Worker #2. I have nothing against Worker #2, not at first anyway, cuz she was impeccably on time. Well, at first she was. Not only that, she was really, really nice, but I don’t want to get into too much about her cuz I see her as kind of a pawn in this story. A really nice human being and it’s not her fault, I have nothing against her. I think she got frustrated and quit caring about her job, but that’s purely speculation on my part. I’m clueless, really.
So back to June/July 2012. I went on a little trip, I’m about to leave and she phones me telling me that upon my return, she’s gonna show up with her boss if that’s okay with me. I say to myself, “Uh oh.” Cuz I know her boss has this degree, this license, that has the power to “section” people, that is, get them locked up, and I know that somehow, that’s the intention. Why my instincts are so crystal clear on this I can only hazard a guess.
They had no basis to section me, none. I didn’t think of the e-mail, but of course, I know it now. He was dead-set on shutting me up. Uprooting me. Or proving himself. Acting a big shot. It was July 18, 2012. So she showed up with him. So I get the song and dance. He didn’t section me, no, he THREATENED to section me. Said that I had edema, mind you, and if I didn’t go to the ER to get the edema checked out, he would section me. Worker #2 drove me to the ER and left me there. Now I had had edema for over a year and no one cared. I’m sure there were phone calls, and fishy things went on in the ER, like people changing their minds mysteriously, and next thing you know, I was sectioned to a hospitalization where they did not even have treatment for my condition. But I didn’t know this. I resigned myself to it, went along with it, said to myself, I’ll play the game and see what happens…but it didn’t take long before I realized how fucked it all was. I’d been there for nine days. I went into my meeting with the doctor, and discovered to my shock that he had no clue why I was there. He hadn’t read the notes on me, clearly. None of the staff were knowledgeable about my condition, they were just plain clueless, except one who went out of her way to do research on her own time about eating disorders. I cherished my talks with her, but usually her shift would come and go, and she said she didn’t have time to talk to me. It was useless and frustrating. Many of the workers seemed bored with me, just not interested, or wanted me to shut up and not talk to the other patients cuz I knew a few things about human rights laws and the Americans with Disabilities Act. I encouraged other patients to speak for themselves, to write, and to never shut up. I think I was there a couple of weeks total. I left AMA. I vowed I would never, ever set foot behind locked doors again. Famous last words, right?
I didn’t know what was gonna happen next. I’d been working on my human rights case against Walden about the hall phones, and by December, I’d won the case, but that’s a whole other story for another blog entry. I got my shit together by the end of August, sorta. That lasted a very short time, I guess about six weeks. Around the third week of October, everything fell apart again. I never did get a good night’s sleep, haven’t really slept for a year and a half now. I think sometime in September I finally got a therapist, but this lasted three weeks. She didn’t know anything about eating disorders and it was all kinda useless trying to explain the medical stuff to her. It took too long. Meanwhile, I was still on a waiting list at this place in the next town over, so I pushed this waiting list and got a therapist there in November. Talking to her was very frustrating. You know what it’s like when you talk to someone and you’re talking about oranges and they’re talking about French fries? You got it. Like, I’d get to something important, and that’s when she’d change the subject. Or she’d harp on something trivial that I didn’t give a hoot about. You know what it’s like when your conversation style just ain’t right with someone? It was so, so frustrating. Then she said maybe we can work on our relationship but I wanted to tell her she needed to change her personality. I gave up. The whole time I saw her it seemed like a waste.
That plus the waiting room was a terrible insult, but I don’t want to get into that too much. Germy, dingy, makeshift, with a tinny radio playing…this gave the message that the clients were Welfare cases not worth anything. You felt disrespect in the air. A poor excuse for ADA accessibility. I climbed up to the third floor on rickety, steep, winding stairs to get to this therapist’s office, and that’s inexcusable. I can run a few miles. What about elderly folk, people with injuries, people who don’t see well, people with diabetes or medical conditions or even baby carriages? Or just a lotta groceries or books to lug? On principle alone, that bugged the shit outa me every time I went up and down those stairs, and sometimes, I couldn’t see the stairs too well. Sometimes, I hadn’t eaten, and I felt dizzy on those stairs. But never mind that.
So by word of mouth, I found a new person, a guy therapist, highly recommended as “fantastic.” Really, who paid this psychologist to tell strangers over the phone that this guy is “fantastic,” anyway? He is “alternative,” she says. Really amazing. On what basis? No, I didn’t question, didn’t ask, just grabbed at it. Assumed this was reality. Believed what she said. Well, I believed it because I had made hundreds of calls and felt I had no other choice. Everyone else had turned me down. He had openings, he made me an affordable offer, and it was too good to be true.
Beware, beware, beware, folks. I had no way of knowing. Anyone can call themselves a therapist, and yes, indeed, apparently he has a license. It goes no further. He’s bogus, and what he did was not therapy. If what he does is not therapy, then he’s not a real therapist, right? Well, I’m talking in circles I suppose, or so you may be thinking. But let me explain. Or let me make a list of his non-therapy. I’ll list what I can, what I dare to. No, I won’t tell you his name.
First of all, his office was nice, very quiet, but it’s not his. His name isn’t on the door. Other folks use the office. He goes there and uses the office to see an occasional patient, so when he gets there, he puts his name tag on the door to show that it’s his office for now. So a couple of times, I got there before the sign was up, and witnessed him putting this temporary sign on the door. This made me question: I mean, how many patients does he have, really? On Saturday, it seemed that I was his only patient. Fly-by-night therapist? Anyway, this alone doesn’t mean all that much, it’s just a bit of a detail I observed, laughing to myself.
So the first time we met, there is no paperwork. No HIPAA papers, no confidentiality agreement, no nearest living relative notation, no paperwork signing off the names and numbers of my other practitioners (my primary care physician or psychiatrist, etc), no paperwork about my address, phone number, SSN, date of birth, no sort of working agreement or anything about cancellation policy or payment agreement. He just starts right in on the conversation. He has no papers, no chart on me, no notes whatsoever. Many people are offended by note-taking, so fine, I can dig it. He is a little crass and a little arrogant, but this I let slide.
I let slide that he kept calling me “Honey.” Now, honestly, I think I should have known this was a red flag, and walked out of the door immediately. But no, I told myself maybe this guy had some wisdom and I needed to listen to him.
Well, what wisdom did he have? I think folks get wiser as they age. So he was older than M, had some years on her, had a bit of wisdom in him, I’ll give him credit for that. He said M was manipulative and she was one of many therapists that should not be in the business. Well, I say that he himself should be added to that list of incompetents.
Oh yeah, it gets a lot worse. He seemed to think he could cure my eating disorder in a couple of sessions and get me off disability. When this was clearly not happening, I could see him getting desperate. So it was like he threw his hands up in the air and blew his boundaries to bits.
Why did he tell me how much he weighed as a kid at various ages? Was that really necessary? Was it therapeutic? Healing? Proving some point? Meaningful? Naw, I really don’t know anything about pediatrics and what kids should weigh and it means nothing to me. I never had kids. I don’t give a shit. I didn’t want to hear that he was born addicted to nicotine and I didn’t want to hear what the pill looked like that his parents put him on when he was little. This is a problem, folks.
Do I really want to know who his ex was? He was about to tell me her name, but I stopped him. He told me a bunch of dirt on her. He told me how he dumped her. This is therapy? How is this “fantastic healing”?
Guess what else? He told me if I wanted, he’d pay my entrance to the AWP conference in Boston next weekend, and I could go with him. Lovely. Totally inappropriate. He was going to the AWP conference for four days and this was why I was not having an appointment for two weeks, see. And he says he’s gonna write a poem about me, so there goes my confidentiality, out the window.
Well, there are a few more key things I cannot put into this blog entry. Are you surprised? I say one helluva lot in my blog, but I’m gonna leave out a couple of things and keep them to myself. I told my minister. Or maybe I didn’t.
So let me skip ahead. I phoned him this morning. I thought I was calling his “office phone,” but hey, I don’t think there’s an office phone. I called what I think is a landline. Or it might be, but anyway, it was 7am and I assumed I’d get a recording and I’d leave a message on this “office phone.” Not the case. He picked up. Like he’s just getting up and putting on his shoes, or whatever. All disorganized, a little panicked. So the patient is calling out of the blue. He has no clue what to say to me, doesn’t know what it’s about, fumbling for words. Hey, I have the upper hand. I’m onto you, you humbug. Gimme those ruby slippers. I’m headed home.
So he was not expecting this. I think he thought, when he picked up and found it was me, that I was calling up all upset about something, maybe wanted to talk, maybe this was a “crisis call.” Oh, I’m sure he’d have no clue how to properly handle such a thing. I have never called him before except the original call to schedule our first appointment.
So I told him I was calling to cancel our scheduled appointment in two weeks.
Get this: He said, “So we’re done?”
I replied, “Yep, we’re done.”
He said, “Okay, I love you, bye.” He slammed down the phone. Yep, slammed.
Now, wasn’t that a bit weird? He didn’t ask for an explanation or anything, didn’t ask why I was stopping, just slammed down the phone. The conversation lasted a minute.
Beware, folks, there are bogus therapists everywhere.
(addendum: I remembered another bit about this therapist and wrote it in this blog entry, click here: https://juliemadblogger.wordpress.com/2013/03/06/a-little-addendum-about-that-therapist-i-saw-recently-now-do-you-believe-me/)
So, what purpose does all this serve? I got something to write about now. I had my adventures. I’m out $90. I ain’t paying no more. And a few more things. That plus my faith in humanity is shot to bits right now. How can I trust? Meanwhile, I’ve fired CBFS, too. This therapist encouraged me to do this. I’m about to fall asleep and I can’t tell the whole story now, but Worker #2 ended up not showing up half the time. She overslept, called in sick, didn’t show up, stopped caring basically. She took long-term sick leave, then showed up for a week, canceled the next week, then suddenly went on vacation. Now suddenly she didn’t show up, and all the sudden she’s on long-term sick leave again and her boss called and in a very cold tone of voice told me this. Now the original boss, the one that sectioned me, that is, the one I sent the scathing e-mail to is gone now. Did he get fired? Oh, who knows. I phoned the new boss and told her forget it, no more “services.” I’m done.
So a few days later she called me and said, “Can I come over and discuss this with you?”
I wasn’t home at the time. I told her so. I said, “What’s there to discuss?”
She said, “We can discuss what we can be doing for you.”
But hey, it ain’t been done in two years, lady. It’s not like their people are gonna start doing it now. They would’ve done it already. Services? Naw. These people do nothing. State money gone to waste. Working people’s taxes. If they were really going to help people, they would come in with housing lists, up-to-date lists of therapists and nutritionists, but no, I get these lists myself, I do all the research myself, I shower myself, I take the T, I don’t need these people. And I sure as hell don’t need to be sectioned again. So I never called her.
Somehow, me and Puzzle, we survive. We get by. We stick together, me and my dog. I can trust her when I can trust no one else. I guess that’s the bottom line. Survival, it’s different for me than it is for other folks. Kinda hard to explain when you have an eating disorder. Your priorities are different. It’s like, you know, life and death stuff. The smaller things fall away nowadays. For whatever reason, not getting fat is one of those life-and-death priorities, and it means risking one helluva lot. Fat means fat means fat, and if you don’t get it, you don’t get it. You wake up and go to bed saying nyah nyah catch me if you can, and if you get caught by death, you get caught, fair and square.
“I just talked to Dr. Woo a bit ago. I felt that he had no interest in me. I felt that he knew nothing about me and didn’t want to know anything, either. He seemed to care [more] about my weight than anything else. It’s not my weight that’s going to kill me right now. It’s how I feel. He asked me if I had any psychiatric issues and I tried to refer to my list. Already I felt like I was being pushed out the door. After I said a few sentences he wanted to end the conversation, then as I read my list he wanted to end the conversation partway through several times. I had to talk real fast cuz he was pushing me out the door. He was switching from page to page in my chart and I sensed that he was doing “paperwork” with it while I was speaking and he didn’t even hear me. I left feeling like I’d been through an assembly line. What are these psychiatrists for? Deb also only cared about my weight and nothing else. This person is supposed to be part of my team.”
My human rights complaint against Walden Behavioral Care, update, telephone rights, you’re just not going to believe this one (or maybe you will)
Yeah, they did it again! I appealed the decision from back in August (or I guess it was July) and sent in something in August. The DMH never received this paperwork, so I resent it via e-mail September 4th, as I told you. I immediately received an e-mail from Lizbeth Kinkead saying she would follow up. On October 9th, I figured I’d heard nothing, so I phoned Lizbeth, and she said the hospital had sent me something, didn’t I receive it? I said, no, I had not. So she resent it. I opened this only to discover that it contained old paperwork, nothing new. No response to any of the new paperwork I had sent, that is, no response to what I sent, originally, back in August that got lost, that I resent in September and have now waited over a month for a response. They in fact did nothing. I believe this correspondence has been ignored. Well, duh, that’s exactly what happened.
Shall I throw my hands up in the air and say, “That’s the breaks!” Nope. I don’t give up so easily.
See. when I was there, I promised those kids that if I ever got better, I’d get them their rights. This is one promise I’m not going to break, folks. I’m going to do this for the kids.
You know, I keep getting this junk mail from an organization called change dot org. I finally opened their junk mail and I think it’s time to start a petition if I don’t get some action out of the DMH real soon.
I have written to M-Power and apparently either their e-mail address is dead or they are too busy to bother with me. Maybe I should make a phone call to them. Or are eating disorders “minor illnesses” to them and are they too busy fighting shock and forced injections? Get real, folks. Ban the tube.
So I had my first public speaking class last night. Hey, folks, I’m going to change the world someday, just you wait and see. That’s what I told the class. It is already happening.
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.