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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?
Is jealousy or rivalry a factor in anorexia?
To me, this is an area that isn’t explored enough. I never heard mention of this in any treatment setting. The topic is usually avoided, except for certain types of rivalry. Allow me to explain.
1) “My mother is jealous of me.” How often have I heard this? A zillion times. Mother/daughter competition is probably more frequently present than not. I’m not saying all mothers are jealous, but many are. This might go either way:
I have seen where mothers are infatuated with their daughters’ thinness, even sometimes proud to have an uncommonly thin daughter. They will be the last to admit to this, due to their own weight-related hangups. This mother/daughter trap is insidious. Separation is probably a good idea, but it’s difficult because such mothers work very hard to keep their daughters under their thumb. They dote on their daughters and coddle them. This is most apparent when I saw mothers as patient visitors. Watching them interact gave me the jitters. These mothers invaded their daughters’ physical space, sitting too close to their daughters compared to the cultural norm. I shuddered when I saw these mothers stroking their daughter’s hair ad nauseum. While it is of course a way to show affection, when done so much, I felt all kinds of red flags. Their postures were imposing. Often, I saw young girls sitting in chairs, with the mother seated ridiculously close, in such a manner that the smothered girl couldn’t even get up from her chair.
I have also seen mothers who compete with their daughters. They won’t admit it, of course. I have observed the language these mothers use, and when I hear this, I know what’s happening. Often, the competition is lifelong.
You are not your mother. Your body is different. While you were in her womb, you were part of her body. However, since the day you left the womb, you have been a sovereign person. Anything to do with your weight should be entirely separate from anything to do with her weight. However, jealousy will bind you into a slavery.
Jealousy alone isn’t the cause of eating disorders, but it might keep a daughter trapped within the disorder for decades. I don’t for one minute feel that eating disorders are caused by “bad mothers,” but that if this cannot be resolved, the daughter is best off separating, even if it’s painful for one or both.
2) “My PCP/doctor is too controlling.” I have heard this, too, many times. I believe jealousy or infatuation are usually at play when a PCP bullies her patients.
We must be aware that doctors often work under complex hierarchies. Unless you are privy to what’s happening behind the scenes (most of us aren’t) then you don’t know if you are being bullied by proxy or if the doctor is acting on her own accord.
Within upper echelons of power, many institutions are corrupt. Let’s face it, the Western medical model is full of false assumptions, so of course, this makes it conducive to corruption. When it happens at the upper levels, it invariably is passed down the ranks. I’m not excusing abuse, but I have seen with my own eyes when a healthcare worker is terrified to speak out for fear of losing her job–or worse. She may be aware of abuse but is afraid to do anything about it. I know healthcare workers who have been threatened. It’s not easy for them. Still, I think it’s unethical to participate in abuse “because I was just following orders.” I also feel that if a healthcare worker is witness to abuse and does nothing, then they are a participant in it.
If your doctor, therapist, or any carer has you enslaved, the best favor you can do for yourself is to separate. This is hard for many because these situations can become complex. A controlling doctor sees to it that you have roadblocks preventing separation. The pressure while in such a situation ends up mostly on the patient, the one on the bottom of the heap.
Separation doesn’t guarantee that you won’t end up in a worse situation. Please be careful. I know some who have fled the frying pan only to end up in the fire.
3) Jealous friends. This problem is rarely discussed. I can imagine that it happens in schools all the time. Nowadays, kids are pressured to lose weight by the school nurse, the media, their pediatricians, teachers and coaches, social media, and their own peers. I often hear that a girl might initially see a positive effect on her social life. Later, the tables turn if a girl continues to lose weight.
Anorexia seems like one of those health problems that doesn’t strengthen friendships. Some problems do, though. I recall when I was a grade school kid, having a plaster cast on your leg was a status symbol. If you were one of the special few, you enjoyed the privilege of cast decoration.
I believe that the reasons anorexia causes friendships to end is extremely complicated. Jealousy is most likely a strong factor, but those that feel this envy are not likely to admit it. The sufferer is frustrated because other kids don’t understand why on earth she cannot “just eat.” “We can eat fine (and we are frustrated over our weight) but why aren’t you eating?” Friends sometimes think the girl has more “willpower,” and want that for themselves. They aren’t likely to come out and admit it.
A person with anorexia might then be thrown out of her peer group or fired from a job. Ganging up, that is, mob behavior and scapegoating can also occur.
4) Within the treatment “milieu.” This is known about among those that frequent these places. I believe most “staff” who work there see it, too. Some people see the “tube” as status symbol. Even being placed on “bedrest” might be a source of envy.
The treatment places try to solve this by pressuring the patients, saying, “Don’t compare.” I don’t think this solves the problem, but instead, places blame on the patient, who is told to deny her very real emotions. I see so many patients who are totally convinced that they have additional diagnoses because they do what their own human nature tells them to do. We are a species that thrives on each of us being able to see ourselves as better off than our peers. Ultimately, comparison with others and seeing our own yards as greener might define our own happiness.
I feel that jealousy can be transferred and handled in an indirect manner. I know this because I have done this myself! Often, I feel envious of other writers who are enjoying fame, good fortune, and respect in their communities, selling out at the bookstores, when I still struggle and feel like I have to twist arms to make even one book sale. I end up being rather mean-spirited toward the writers I am jealous of, even lashing out at them. They didn’t do anything wrong, and I recognize this. The problem of unevenness is societal, not the fault of those that reap the benefits of what we know of as success. It bugs me when other writers deny that this intrinsic inequality exists. I am not proud of the times I have lashed out inappropriately.
This unevenness was made clear to me in one of my grad school workshops I attended. This was one taught by Ryan Boudinot. I recall that he was asked to do this workshop again, but I know he didn’t give it at every residency. Boudinot gave us an insider’s look at Amazon dot com. He knew just how insidious many book marketers are. The world of selling books isn’t fair or just. It’s a rough world out there.
We live in human society, run by money, greed, and of course, envy. These have been around since we evolved from the apes. I am not sure how much could or should change, but I don’t think it’s productive to deny the existence of these very real human emotions and behaviors.
An e-mail I sent Aug 27, 2013 to 1-800-suicide. Is this what it means to get “help”?
I sent this letter to the person in charge of 1-800-suicide the day after I made a call to them. This was only a few days after I got out of Mount Auburn Hospital, where I was abused. I was scared to death after what they did to me. Because of the actions of a number of hospital personnel, I was questioning whether it was truly worth it to go on with my life. I had no one to talk to at all. It was 3am. What was I supposed to do? Many people have parents or siblings they can call at 3am, if they really need to. I had no one.
I needed to make a decision. I needed medical care, but was scared to death to see a doctor. I had been badly traumatized and the sight of a doctor or medical facility scared me so much that I feared I’d never see one again. I knew any medical appointment I made with my “health plan” meant whatever doctor I saw had access to my records. I had set up an appointment at a walk-in clinic for Sunday. Should I go to this appointment? I was told this was a GP I was seeing. But what if he insisted I see a shrink? I knew I was flagged in their system as….as what? Just another mental patient, I guess, a waste of their time. So why bother? I knew I’d get shitty care anyway.
It was 3am. I needed to make a decision within a few hours. Cancel? Or go to the appointment?
I was stupid enough to call 1-800-suicide. Why? Cuz the last thing I wanted to do was to call the local crisis team. If I EVER did that, I was sorry every time I called. I wanted to call out of state where I could be sure no one knew me. I figured that meant an unbiased opinion.
Oh boy was I ever wrong. That was the last time I called 1-800-suicide, for sure! I sent the following e-mail the next morning to the complaint person who runs the deal.
Hi George,
I believe it was Saturday night/Sunday morning at around 3am when I phoned 1-800-suicide. I have no friends I can call at 3am and no family. There are no available “talk” lines open at 3am and my own local crisis team cannot be called without giving them my name and location.
I did not wish my mind put at ease. I can put my own mind at ease. What I needed was help making a decision based on the facts I was going to give her. No special medical knowledge was needed. I am not good with people but others do have this skill and can help me, and this was what I needed at 3am. It very well could have ended up a life and death matter, but I was finally able over the course of those wee hours and the following day to make the decision and I made the right one.
Regarding the call itself, I first asked where I was calling to make sure the call hadn’t been routed nearby or to my local crisis team. Then, I asked if the crisis worker had set a timer and was going to cut me off and give me a “one minute warning” at 9 minutes and then hang up after 10 minutes. These calls are a waste of my time because I have had cognitive trouble and cannot express myself efficiently. It takes time. My ability to efficiently express myself is impaired even further when I am stressed out.
The crisis worker demanded to know if I was suicidal. I said, “I have anorexia nervosa.”
She insisted that I phone a “talk line” instead. I said, “Do you understand what anorexia is?”
She was clearly insulted by this question and sounded annoyed when she said, “Yes, I do.” Then she proceeded to blast me for making an “inappropriate call.” I really don’t need to feel so unwanted and like no one wants to listen, especially since that’s one major reason why I starved myself in the first place.
Two weeks ago, I went “full code” at an emergency room because of self-starvation. I am lucky to be alive today, but my kidneys are working only partially and that’s permanent damage due to starvation.
No one working in the suicide field can tell me that they truly know what anorexia is and then put me off like that worker did. Anorexia is the desire for thinness over life itself. Anorexia almost killed me. I now desperately want to live. Is there a crime in wanting to live?
Finally, after getting further lectures from this worker about my “inappropriate call,” I hung up on her. All I know is that I was phoning from Massachusetts and she was in Connecticut and it was around 3am this past Sunday. I can get you the exact time if that’s helpful off of my cell phone records.
It is my dream to start a helpline for eating disorders that does what no other service provides. I would like to start a line staffed by real people with lived experience with eating disorders who have known first hand what it’s like to be scared about what is happening in body and mind and have no one to turn to. We would be open in the wee hours, when a service like this is truly needed.
Have a nice day.
Julie Greene
***
“George”” never wrote back. I sort of knew he wouldn’t. People like me didn’t matter anymore, I figured. My opinion was considered completely worthless, as was my life. I had starved mainly because my family and many in my community clearly didn’t give a shit about me. The abusers at the hospital had only served to reiterate that fact. They never even saw me as human.
If society saw me that way, as subhuman, what was the point of going on? I vowed over and over that what I needed was to get away. I didn’t know how yet.
What will bring a person with anorexia out of a the worst downhill spiral of their life?
I will try my best to answer this one out of my own experience because I’ve been there.
I kinda doubt one person would make a difference. Falling in love with one person, at that time, wouldn’t have helped or changed things. Not for me. It was too late. People fall through, for one thing. They’re human. Also, no one person should bear the burden of taking care of another so entirely. I couldn’t have expected that from a partner. We’re adults. It’s not like me, a human, was a little doggie like Puzzle that asks only to be fed, walked, petted, trained a bit, and taken to the vet now and then. I’m human and far too complex. A relationship such as marriage is mutual. Give and take. If I am falling or you are falling, we need more than a partner to fall onto. We’re gonna fall hard if we aren’t eating. I was weak and hardly able to think straight or relate to another person.
To say to me, “I promise this if you recover,” well, this meant nothing to me. Just empty. Meaningless. To tell me, “You are thin,” fueled the fire, of course. I’ve mentioned this in the past, how my doctors often made remarks such as, “You look like you come from a concentration camp,” and I enjoyed hearing such things, as if this reinforced what I was already doing. These remarks gave me strength and made me feel rebellious. Catch me if you can!
The “fuck you” nature of everything I was doing only got stronger the more I got criticized. I think LOVE was more helpful. The simple type, just someone reaching out. I often feared it. I was scared it would break me. As if I’d give in perhaps and stop my silly starvation game. Of course, that would have ended the spiral. If someone had reached out just a tiny bit more.
I had great ways of keeping people away. Fantastic ways. I’d devise them. I promised myself I’d pull back. I’d never, ever allow myself to cave into that hand that reached for me. I’d never allow myself to be rescued. And yet….
There it was. I’d tell myself to grab on. Then I’d tell myself not to. The endless debate. Then, retreat. Slowly, the chances to save myself faded.
After a while, there were no more words. Almost. I remember the scribbles because my hand wouldn’t form script. My mind couldn’t make letters so I wrote nonsense scribble one night. It wasn’t psychosis. Hardly. I was that starved, yet I still retained the need to write. I could still hold a pencil.
I was still alive.
And I am alive today. I don’t particularly know why these things occur, why some happen to be lucky and others are not.
I do know that I would have liked to have been told the following. It’s something that I heard once at a protest when I was a young college kid:
THE WHOLE WORLD IS WATCHING.
Yep, watching me. Julie, you will do something great. No, you’re not doing it because God is guiding you, or because some therapist is holding your hand, or because of some dictates in some holy book or mandate or religious principle or group hug. There is no predestiny to worry about. Just keep going. You are are doing this because you have done the amazing and will continue to do fantastic things. You are still alive. The whole world is watching and you are incredible and beautiful and unique. Just that.
And that’s why I keep going. You should, too. Keep following and we will all be fantastic together.
Stages of going deeper into an eating disorder
I wrote this last night. I had been lying in bed then suddenly popped up and said to myself, “Wait a minute, I GOTTA write this one down.” So I grabbed the nearest pencil and paper and started writing.
March 11, 2014
I am writing this down because I want to help others with eating disorders. And to record how it happens.
There seem to be stages. Like you are walking deeper and deeper into it. From one stage into the next stage. It’s so easy to go unnoticed.
So at first, perhaps stuff is okay, or appears so, but something goes haywire, and life isn’t right at all. You question everything. You are shaken or uprooted. Why is your eating so berserk?
You get frenzied. Panicked over your eating. Are you truly out of control? Will that dreaded thing happen? You are in a maddening whirlwind. You feel that you must put demands on yourself.
You get more and more boxed in by your own rules and demands.
You could stay stuck in this limbo for years, or perhaps go into it deeper.
I guess that’s a slightly calmer place, less frenzied, however, you’re struggling to get yourself to use your mind to do even the most basic thinking at this point. Yet you will survive, because humans are animals. You may die, though, because humans are mortal.
You get to a point where you know you are in that safe zone, you are anorexic all over again. It feels familiar and comforting and powerful and it separates you from others, especially when some irresistible goodie is passed around and you make up some dumb-ass lie about your bogus allergy, “Oh, no thanks, not for me.”
You stumble home. You fall into bed. You hope that tonight, you don’t die in your sleep.
After Seroquel: Response to an article by Nancy Rubenstein Del Giudice
Nancy’s wonderful article appears in the online publication, Mad in America here:
https://www.madinamerica.com/2012/06/after-seroquel/
This is an online magazine I’d highly recommend reading, by the way, for anyone out there. It’s rather enlightening.
Of course, I have an account with MIA, and I love to contribute my two cents whenever I feel like it. So I throw in my opinion and say what I want.
I first heard of Seroquel from another patient around 1998, a woman who was slightly younger than me. I don’t recall her name and she wasn’t my friend, only an acquaintance. She told me that she was happy with the drug because her doctor had assured her that finally they had found a pill that didn’t cause weight gain. I remember she had a lot of pimples. I had pimples, too, from Lithium. Were hers from Lithium, too?
We all had pimples back in the 1980’s. It was one of those tell-tale signs that you were a mental patient, it was like the symbol of wearing an armband or having a number tattooed on yourself. Soon, within years, that big belly from Zyprexa and Seroquel, this would be the tell-tale sign of a mental patient. Other signs were the ever-present “I’m gonna jump out of my skin” restlessness, the hair-pulling, the fidgeting from antidepressants or of course, the unmistakable Tardive Dyskinesia.
So I thought to myself, after hearing from this young woman about how happy she was with her Seroquel drug, that I was glad, back then, that no drug had made me gain weight as of yet. Yet. She said to me, “I see you are still thin.” She gave me that slightly rude “up and down look” us anorexics have grown to love and hate so much. I wasn’t sure what to think about that. Was she disapproving, jealous, concerned, passing moral judgment, or worried that at some point, she would gain weight? I guess I’ll never know. I never saw her again or found out whether her doctor’s promise came true, because I know now that Seroquel usually does cause quite a bit of weight gain.
Sure enough, I got switched to a super uneducated, unfeeling, uncaring doc, one that belonged in research and certainly should never have had a human patient. He put me on Seroquel. He shrugged, saying he didn’t really know what it would do. He also kept raising my antidepressant Effexor, raising it higher and higher and never quite understood why I was jumping out of my skin and not sleeping. Any dope could have told him that Effexor causes insomnia. Google it or go to drugs dot com or web md if you doubt me. Then I ended up with another doc. And eventually 2000 rolled around. My weight dropped at some point and the docs decided (oh how brilliant) to treat me for anorexia, but they wanted to put me on the fast track, that is, being inpatient, I had already used up too much taxpayer money, being a waste of a human being anyway, so they wanted me out of the hospital as soon as possible, fattened up lickety-split.
Oh, I can imagine these doctors in their secret conferences, in their huddles, saying to each other, “Let’s raise her Seroquel! After all, that would cause rapid weight gain and ‘cure’ me of anorexia faster. ”
Yep, you bet, in fact I saw the doctors rubbing their hands together that day they were leaving the staff meeting they’d had about me. I saw them chuckle and heard them say, “She’ll never know.” Then they glanced up and saw me standing there and said, “Shh..she’s right there!” Of course, they were speaking of the Seroquel side effect of weight gain.
I looked at them and said, “What? You are talking about me?”
They said, “Oh, no, Julie, you are having paranoid thoughts.” They laughed at me as if they were poking fun of me.
I thought, they are jeering at me. Again. And yet, I knew they’d been talking about me and didn’t want to admit it. They looked at each other and their faces turned red, and they walked away. They’d been talking about how I’d never find out about one of the handiest side effects of Seroquel that they assumed could be used deceptively: massive weight gain.
I went to get my pills that day and found out my Seroquel had been raised to 600. I was fully cooperative and took these pills because I knew no other way. They weighed me every other day, but I was not allowed to know how much I’d lost or gained. Often, though, I could tell by the expression on the nurse’s face if there had been any sort of change.
One day, not long after, the doctor came in and was all smiles. “You’re cured!” she said to me. “Congratulations on your recovery from anorexia.”
Folks, the year was 2000. It’s now 2014. Did Seroquel cure my anorexia? Read on…
2001 was decent I’d say. Some of it. I went back to school that spring and took one evening literature class. Our instructor was one of my most influential instructors at Emerson. Her name was Ellen. God help me if I try to spell or pronounce her last name…I won’t cuz I’ll goof it. She expected the class to do loads of writing, which of course delighted me. The rest of the class had mixed feelings and frankly, I didn’t give a hoot. I kept on writing till I wrote an entire book, and this, in fact, became the collection of short pieces I published with 1st Books (AuthorHouse) the following year, called Breakdown Lane, Traveled. The title of the book comes from a poem I wrote not long after my dad’s death in 1997. The poem isn’t there in the book as a poem, but a prose chapter (if I recall correctly). It evolved from a simple memory:
The day my dad died, Joe called me later on and asked me if maybe I’d like to go with him into Boston “just for the ride.” He was picking up his paycheck, he explained in that gruff voice of his, and then driving back home. It wouldn’t take long and it would get me out of the apartment. “Bring Tiger,” he said. “She’ll love it.” Tiger was my little Sheltie. She was too large to ride in my lap the way Puzzle does now, so Tiger happily rode in a doggie seat belt in back. Sometimes she gazed out the window and sometimes, she didn’t.
You know how it is right after a loved one dies…it’s like you are in a fog. I remember that fog very well. How the road looked to me, all the roads ahead in Boston flashing before us. Joe swore to himself while he drove every now and then. It was a barely audible mutter of his, “Asshole, asshole, asshole…” I am certain it become anything close to road rage.
We were headed toward South Boston, or, rather, Southie to locals. I’m not sure where we were. Boston is all alike to me, all roads, spaghetti of asphalt, signs, this way and that, something someone else has to decipher, someone else’s job, not mine. There it was: ROAD WORK AHEAD. What did this mean? Road work ahead. Then, the road got bumpy. It stayed bumpy and broken up for a while.
Later that day, I thought about that road and what it meant and I wrote “Road Work Ahead.” I showed it to a few people. They shrugged. I got teased, too, as usual…. “So you’re a writer, eh?” It was 1997, and the doctors were about to put me into the state hospital, that is, locked up for life, hopelessly incurable. A year later, of course, I wasn’t at the state hospital. I was on my way to college, pursuing a writing degree.
So in 2001 I wrote Breakdown Lane Traveled. I’d say that semester was my most prolific at Emerson. My writing went downhill from then on, and my weight went uphill, that is, higher and higher as my self esteem likewise plummeted. I became sluggish, too, and my ambition faltered.
In mid-2001 the one and only therapist I’ve ever had that was truly an excellent practitioner (though not an ED specialist) left her practice. I liked her mainly because she was a decent and caring human being, and also, she was responsible, hard-working, and reliable. She’d been laid off, sadly. She transferred me to two people, a psychiatrist and therapist that she thought would be a good fit because they knew about eating disorders supposedly. The psychiatrist did, but the therapist sure didn’t.
It’s so sad that neither of these new folks had any clue at first that the Seroquel had caused the weight gain I was going through. Up, up, up. The psychiatrist was so out of touch all those years with what was really going on with me. Her appointments were always too rushed. I had to go in with a list and I always felt nervous that we’d never have time to get through the list. I always felt pressured, scared, and the constant feeling that I, worthless me, was wasting this highly paid woman’s time and she could shoo me away the way a person pushes away a fly. I was a mere nuisance to her. She paid more attention to her computer and pager than to me.
Worthless, worthless, worthless. And now, by 2005, I sat there before her, fat. I’d gained 110 pounds. Taking up too much space in her office. By the minute. Seroquel oozing out of the flesh of my overweight body.
I’m five foot one. At the time, I weighed nearly 200 pounds. I’m not supposed to weigh 200, trust me. Don’t argue. I felt like crap.
The last half year was brutal. On 900 mgs of Seroquel a day, I’d gained the last 50 pounds of weight in a mere six months.
“I only want to cut the extra flab off,” I told her, completely exasperated.
“Oh, so you feel like cutting?” she said. “Maybe we need to consider hospitalization again.” She tapped away at her computer.
Many years later, this doctor told me over and over how “happy” and “stable” I was on Seroquel. However, what she saw of me, in those rushed appointments, was the person she only saw through her own extremely warped perception. It was if she were wearing rose-colored glasses of her own. I tried to tell her, over and over, how unhappy I was, how much I despised my body and wished I could instantly shed it entirely, every last bit of fat.
Looking back, I remember I tried taking these exercise classes, thinking it might help. That surely was one helluva degrading experience being “the fat lady” in those classes. I felt so ashamed. Finally, I left and never went back. The mantra, “out of shape, out of shape,” repeated in my head.
Then there was the gym. It was a great gym, hardly cost a cent, but there were a few embarrassing moments as “fat lady” that made me feel shameful. Imagine this: One day, there were a fair amount of people at the gym, typical day, and I got onto the exercise bike (I was too fat to do the treadmill or elliptical) and started to ride. I had an MP3 player. This was the early days of these players and the newer, fancier ones didn’t yet exist. I turned my player up loudly so that I could ignore everyone around me, all the trim and happy elliptical riders. I pumped the bike harder and harder and dreamed of thinner days. I thought if I circled those pedals around fast enough, I’d sweat out all my fat. I’d be thin again, and never have to feel so degraded again, especially by my therapist and my psychiatrist with their perfectly-toned bodies.
I remember how they’d talk about how “easy” diet and exercise were and how I needed to exercise more and more. “It’s your attitude,” my therapist would explain. “You need to live one day at a time. ”
“I’m trying,” I’d say to her. “But today I woke up and I am still fat and unhappy. I went to bed last night fat and unhappy, too.”
“Well, then,” she said, “accept your body. Self-acceptance is very important.”
Great message, eh? So I said to her, “I absolutely dislike being fat and I’d rather change the way I am. I don’t want to accept it and I don’t want to stay this way. Why am I continuing to gain weight?”
She had no answer.
That winter I experienced the worst thing that ever happened to me as an overweight person and I wouldn’t wish this on anyone, ever. I was bullied. It’s so shameful that this happened to an adult, not a child, and even worse, those that bullied me were educated adults who by all means should have known better. These were future healthcare providers. I never told anyone for many years.
January, 2005. You’d think at the absolutely most liberal college where the students are mature and older, this wouldn’t happen, but it did. This was my beloved graduate school and no way do I hold it against the school as it was only the fault of that small group of three or four students who were part of the Health Arts and Sciences program (HAS), and no one else. No faculty or staff knew anything about this or learned that it occurred. If anyone overheard and reported it, I never learned this either. I had thought that one of the writing students with whom I’ve kept in touch over the years had overheard, but I asked, and the student, now alum, has told me that she wasn’t present at the time.
Here’s what happened: Our college had a dining hall where we’d have cafeteria-style meals. I’d say a couple of hours were designated for this so a large number of students could get through the line, and relax at mealtime. This was a nine-day residency, that is, the program met as a whole for nine days, then for a number of months we’d all do our work at home, staying in touch and working with our advisors. I don’t know anything about the HAS program. I worked my butt off in the writing program (MFA) and eventually finished. I’m awfully glad I did and I’d say grad school was by far one of the most rewarding experiences of my life.
But back to the dining hall. This was my third residency at the college. I had come back now six months later and 50 pounds heavier. Of course, there was a bit of a reaction from a few people. Not all polite but some out of concern. I’d say some were “helpful” in a way that was a bit degrading, like “Why don’t you get off those drugs, anyway.” It was just beginning to dawn on me that maybe the Seroquel had caused all this.
What were these pills, medication, or drugs? Why did I always feel insulted when people said “drugs” instead of “medication”? Why was this subtlety so challenging to me, this reality so hard to face?
I felt like I could no longer walk. No, I waddled. So I waddled to the food, picked up what I wanted, and sat at a table. By myself. I wanted to eat this fattening food by myself undisturbed. I sure didn’t want to look at anyone that was thin. Please, get out of my sight. Get away from my fat. I tried to chew slowly. All I could see were my chubby fingers. I wished I could take the butter knife and carve around the puffiness, leaving only bones.
Right away, my former roommate, who was an HAS student, sat down with me, as did her cronies from the HAS program. I was dreading this.
“You shouldn’t eat those things together,” said one. “Never together. You’ll get diabetes. If you don’t have it already.”
I said, “So peanut butter and jelly on bread, a PB and J sandwich, which I’ve eaten since I was a child, isn’t okay?”
“Oh no, peanut butter shouldn’t be eaten together with bread.”
“Oh yes, considering her weight,” someone said.
“Fat pig!” another said. Then, they all chimed in. Fat pig, fat pig, fat pig.
“She takes antipsychotics!” Antipsychotics, antipsychotics, antipsychotics….
“Don’t eat that! Can’t you control yourself?” Fat pig, fat pig, fat pig….
You never know what to do in these situations. I think of Kelly Thomas crying out to his dad while being senselessly beaten in Fullerton, California by cops, but I wasn’t being beaten at that moment, and I wasn’t scared I’d die. Maybe I should have been, because down the road a few years the long-term effects of bullying could in fact be fatal. A bumpy road lay ahead, to say the least.
Sure, being overweight sucked bad. Lots of folks can relate to medication-related weight gain. But what happened afterward?
I got smart. Sure, I had Internet access and I was an active participant in plenty of message boards. I used search engines and finally found out the bitter truth: Seroquel was for sure the cause of the weight gain. Once I got home from the residency, I went straight to my psychiatrist and demanded an end to Seroquel.
I’m lucky, I guess, that getting off wasn’t too hard. I didn’t go through the horror of withdrawal that Nancy Rubenstein Del Giudice went through. My psychiatrist switched me to Thorazine. I’d been on Thorazine before. Also, I was on other antipsychotics simultaneously. I was on THREE antipsychotics, all at once. I didn’t need any of them but I was totally convinced that I needed all three. I was also taking two anticonvulsants at the time and an antidepressant as well.
With the Thorazine came skin photo-sensitivity. Want another word for it? Sunburn. I looked like a $20 lobster hot off the grill from your favorite restaurant totally coated up and down with paprika, and if you add 30% tip for the servers that bring you that lobster, I’d say I was fully cooked.
Then came Tardive Dyskinesia. It never occurred to me that Tardive Dyskinesia might actually be put to good use in the bedroom. I say this jokingly, of course, although I’m sure doctors, while at their drunken doctor parties or in their private golf games or yachts, joke too, about “the vibrating tongue.” They sure poke fun of us mental patients behind our backs and they’re not good enough at hiding it. Over the years I’ve overheard and seen their mimicking enough times and I’m disgusted.
Worthless, worthless, worthless….
So my psychiatrist and I realized the Thorazine would have to be chucked. She tapered me, and I’d say she did a good job of it. Also, she consulted a TD specialist. I felt rather respectful of her for doing this, first of all, because she fully believed my reports of what was going on with my tongue instead of calling me “crazy.” By the end of 2009, I was safely off Thorazine. I was rather happy that I was no longer the color red. I no longer matched the Thorazine pills. Then, I noticed a distinct wiggle in one hand, my right, and not my left. I reported this to my psychiatrist. She confirmed that this was Tardive Dyskinesia caused by Risperdal. We decided that I should get off Risperdal, but somehow there was miscommunication or she changed her mind. I was on 6 mg and she lowered it to 3 mg, then kept it there.
Allow me to back up. What happened to my weight when I got off Seroquel? You guessed it. Immediately, my weight dropped. As soon as the drug was out of my system, 7 pounds instantly left me. My weight continued to drop. I was still having trouble with leftover binge eating problems and what had been the beginnings of blood sugar issues. I’m sure that if I’d stayed on Seroquel, I’d have ended up with diabetes, though doctors refused to admit this. Anything but admit they were wrong.
While on Seroquel, this was what would happen…I’d try to eat normally but if I didn’t eat once ever couple of hours and went, say four or five hours without nourishment, I’d break into a sweat and I’d feel hot. You’d assume it was a hot flash, however, it wasn’t just “feeling hot.” I’d also simultaneously become so weak that I’d be unable to stand or walk, or sometimes, even sit in a chair. I’d nearly black out. I’d “see spots,” in other words, there would be some sort of vision change that you often get when you are going to pass out. There was a consistency to this. Eating something, such as that which a diabetic would eat to quickly remedy low blood sugar would get me out of this…if I could get hold of something quickly…if I had the strength.
Of course, I tried to tell my psychiatrist, but she cut me off mid-sentence and said, “You are having hot flashes. You need HRT. Go get hormones. Why aren’t you listening?”
Why wasn’t she listening to me? I couldn’t get anyone to believe me. They assumed it was “all in my head.” Panic attack or something, if they even heard the first half of the sentence. They don’t listen.
So after Seroquel, I no longer had these weak spells, thankfully.
Honestly, everyone is an individual. By all means, I am against the cookie-cutter approach to any medical practice, whether it be psychiatry or the treatment of eating disorders or the use of drugs in general. I don’t believe all psychiatrist are bad. I don’t believe all drugs are bad.
Even Seroquel. I suppose it has a few uses. I’ll bet a veterinarian could use it to knock out a horse. While under, the horse would be happily dreaming it was grazing in the greenest pasture and having horse sex with a stallion. Upon waking, the horse would discover she was missing that bad tooth she had been dying to be rid of, and the vet would have collected his small fee and be over at the tack shop, on his way to the nearest stream with bait and a rod.
I was quite happy that in 2006 or so, that that yucky, ignorant therapist (the “accept yourself” one) finally left after five long years with her. The psychiatrist was REALLY not listening by then. She never knew I disliked that therapist intensely and was dying to switch. I hoped the next one would be better. I saw this new one in her home. It was her “home office.” She had a “day job,” then came home and saw clients in the evening. At first, it seemed promising. Oh, the first session. Then certainly downhill from there.
This lady was all “reputation” and nothing else. How on earth did she keep this day job she had? I have no clue. At her home office, every session, she literally fell asleep before my eyes. I wasn’t sure what to do about this. I tried to encourage her to drink coffee to stay awake. She’d go get herself coffee and try again, but alas, her head would droop and then she’d jerk awake again, sigh, and say, “Sorry! It’s not you, I’m just tired,” and then fall back asleep. Usually, if the next client was late, our sessions would last a full hour and a half instead of an hour. That woman was asleep anyway so it didn’t matter. I figured I’d try to time my exit with the bus schedule, for convenience. Our actual conversations centered around her issues and not mine, for instance, her family problems, her surgeries, her other clients’ issues, her past clients, and all the details of legal cases she wasn’t supposed to talk about. At one point, I had to put my foot down and tell her to please not speak on a certain topic because it wasn’t legal or ethical. She promised she would stop doing this, then right away began to betray confidentiality all over again. One session consisted of a crying session, that is, she cried over her former client that had died of cancer. I decided this was enough. No more. I quit.
Sometime in there, I was raped by my neighbor. Neither my psychiatrist nor my therapist heard what I was saying nor cared one bit. That was late March 2008. I believe it was late June or early July, right before my grad school residency, I showed up at the Mount Auburn ER saying something was “wrong” (I couldn’t quite put a finger on it but I felt rather unwell) and the nurses were cross with me and said I had the “common cold.” Of course, I was shooed out of there. I thought that was weird because I didn’t have cold symptoms. Instead, I felt doped up. And not listened to…and….something….about Bob that I couldn’t fathom….what? A memory out of reach.
I have no clue why I lucked out July 31 into Aug 1st 2008 with the local Crisis Team, because they’ve always been jerks to me. This was the one time they weren’t. They’ve since been taken over by an entirely different management company. This is what occurred: They came to my home with a cop but the cop left as soon as everyone decided that I wasn’t “dangerous.” They talked to me. Guess who called on my landline right while they were talking to me? Yep, my psychiatrist. She started yelling at me in a rather insane manner, so loudly that all in the room could hear. She never knew in the many years that followed that the entire conversation could be heard because she was yelling in the phone so loudly. I recall that I put the phone down beside me. I was sitting on the futon couch that converts to a bed. It was folded up like a couch at the time, in my living room. The Crisis Team workers sat across the room, their jaws dropped in shock as she yelled like a madwoman.
“That’s your psychiatrist?” someone asked.
“Yeah,” I said. I felt rather apologetic. I wondered how on earth I would end this conversation with her or hang up the phone somehow. She continued to go on, without allowing me to get a word in.
“Phew!” someone said.
The following day, I met with a crisis worker again and we pieced it all together. Not for one minute do I believe that the crisis worker “suggested” that I’d been raped and then I was convinced of it. Absolutely not. In fact, she never used the word rape. I never actually recounted the story to anyone, or fabricated anything or made up anything and no one ever led me on in any way. It occurs to me now that most likely, when I told my psychiatrist and eventually, the cops of this assault, this was the assumption.
To those that believed or still believe this rape was fabrication, go to hell.
My psychiatrist shrugged it all off. Said it was “nothing.” Said I’d been “happier” on Seroquel than off Seroquel and started blasting me for losing too much weight. I guess I was rather pissed off at the whole situation. And what did weight have to do with it? It felt like losing weight was some kind of sin, and I was now deemed a dangerous criminal. Starvation felt like the last weapon I had against this woman, this psychiatrist. She was too powerful. I regretted that the weapon was turned against me and not her. Why does it always happen this way? Why don’t we slam those that are really hurting us instead of driving our own selves further and further toward the grave with our own vengeful acts?
I’d lose. I’d gain. A balancing act. A game. The more they tried to take control, the stupider it all seemed. Why were they doing this to an adult? I felt crushed. Changing therapists yet one more time, and again, made it worse. I sure didn’t need to go to someone’s office and play kiddie games. I felt like if I saw one more Teddie bear, I’d finally acquire a skill I’ve always wanted: I’d throw up. Ask me to call the Teddie “Ed” and talk to “Ed,” I’ll throw up ten times more. Only that didn’t happen, but I sure got accused enough times.
So my weight got extremely low, not once but several times, over the past bunch of years. Yeah, I’ve nearly died more than once, and you gotta figure “nearly dying” is not the same for someone 18 as it is for someone in their 50’s like me. I’d like to also add (in case you weren’t aware) that I am ALIVE.
I happened to stop antipsychotics cold turkey. Yep. Weirdly enough, that’s what happened. I guess it was a fluke. BY ALL MEANS DO NOT DO THIS. I DO NOT RECOMMEND TRYING THIS AT HOME WITH YOUR OWN KIDDIE CHEMISTRY SET. IT WILL EXPLODE IN YOUR FACE. What I’m saying is that I was very, very lucky that I ended up okay.
I didn’t have a choice at first. That’s the truth. I was incarcerated in one of the worst prison/psych ER’s in the city. This was not at all a medical facility and I have no clue what got into someone’s head to put me there along with the drunks and criminals that showed up. There weren’t even nurses there. There were “guards” of sorts. Never mind that my vital signs screwed up by then and they didn’t know how to deal with anything “medical.” I told them upon arrival the precise doses of everything I was on, however, they promptly forgot everything and never gave me any pills. Finally, after a couple of days I informed them that maybe I’d have a seizure if I didn’t at least get the anticonvulsants.
After having spent three days in the ER, I never bothered to restart the antipsychotics. Why should I? I’d been on 20 mgs of Abilify and 3 mgs of Risperdal. I’d shown up at the ER weighing 84. The day I left the “guard” that took my vitals forgot to report to anyone that my pulse was 45. I suppose it didn’t matter, right? After I left, I lost more weight, and my pulse got slower. I confided in a knowledgeable friend who told me I’d better get some real medical care. “I fear that you may be near death,” she wrote. I appreciated her honesty. She wasn’t pushy. We’re still friends.
All that, and the aftermath (I’m still alive) ended up in a medical abuse fiasco I’d rather not get into right now. It didn’t have anything to do with the antipsychotics. Actually, nothing happened as a result of stopping them. I didn’t get the withdrawals, never heard voices, never had flu-like symptoms, never flew off to the other side of the country, never fell in love with a movie star, never had anything really that can’t be attributed to “normal life.” Well, it’s been a rocky road anyway, and most likely would have been with or without pills. Just about everyone with anorexia has insomnia. Or the kidney disease could cause it, too. I never had a seizure.
My vision is far better than it was. I don’t have to see the eye doctor so often. The prescription has stopped changing so rapidly. I wish I had 20/20 vision, though, because then I wouldn’t have to pay a penny for glasses. That cloudy vision I used to have? That was the coating on the glasses lenses, not caused by the teeny cataracts I have. Get a cheap pair and tell them you don’t want coating and presto chango! Your cataracts will be solved.
My balance is far better without the psych meds. Don’t for one minute assume, “I’ve had lousy balance all my life.” Betcha you haven’t. Don’t let a doctor tell you it’s “all in your head” if you try to tell them the pills are making you fall over, or that “you are anxious” or having a “panic attack” if you ask the doc to lower the dose if the pills make you weak. Yes, you are entitled to a second opinion. Asking for one isn’t a mental illness. Why fall when you don’t have to? Spare yourself.
If you fall and break something, that means months on crutches, out of work or even taking a semester off of school. It means paying for day care for your kids, extra expense for transportation, lost paycheck, maybe a lost of employment, lost tuition, possibly permanent physical damage, maybe if you are older…loss of independence, losing your home, being put in a nursing home and most likely you ain’t gonna be alive much longer.
Goodbye, antipsychotics, including Seroquel. I’m not fat. I said goodbye to my psychiatrist last July 2013. Never mind the little (or maybe not-so-little) brush-with-death fiasco in August. I’m alive. I saw another shrink in September, a one-shot deal, and decided she was full of BS and have not seen a shrink since. No, I didn’t shoot her with one shot…PLEASE DON’T TAKE ME LITERALLY. I’m all for horse shenanigans, romping in hay, staying alive, and not shutting up.
My comments on Thomas Insel’s keynote address: NEDA conference…as posted on YouTube
First of all, my little two cents were the following:
You speak of insight. Frankly, the problem isn’t the that the patients lack insight. The practitioners themselves lack insight and fail to see the wonderful insights that us patients have. The DSM, any DSM, should be tossed out, and the voice of those who actually have these eating problems should rise above the voice of unknowing “experts.” Psychiatry should take its fingers out of the pie. These classifications and oversimplifications do us no favor. They cause stereotyping, bigotry, profiling, and denial of care.
For instance, during my very last ever appointment with such a person, a psychiatrist, September 2013, this woman “looked me up and down,” clearly trying to sneak a peek at my weight, and then, noting that I was thin, said to me, “So what’s your problem?” She pulled out her prescription pad.
I told her I suffered from anorexia and I also suffered from severe binge eating but that I did not throw up.
The woman glanced at me again and then said, “No, that’s impossible. There’s no such thing as as anorexia with binge eating. You are delusional. Take a pill.”
I left in disgust, realizing my eating disorder had been around longer than she had even been alive. Dr. Insel, I’m no adolescent. I’m your age. When you and I were growing up, we didn’t see Twiggy on the news. I saw Vietnam, and later, I heard Nixon lie. You did, too. My doctors lied to me as well.
Sinner
So of course it’s done deliberately, the guilt-trip…
They pair the sinner anorexics with the women dying of breast cancer. They do this every time.
2011.
Next to me, dying in her bed, was a lovely lady dying of breast cancer. Sweet and tender, and yes, dying. Surrounded by loving family of course, and flowers and cards galore. Every five minutes the nurses came in and ever so gently, asked, “How is your pain? How can we make it easier for you?”
The sweet and wonderful lady almost always answered some very high number such as 8 or 9 as her pain level on a scale of 1 t0 10. The nurses offered her pain meds and comforted her. “Is it better? How can we help?”
Then they’d strut past my bed, giving me the coldest, rudest look imaginable. Nasty remarks to back it all up.
I had no visitors. No cards. I was repeatedly told I they didn’t want me there, and no one wanted me at home, or anywhere.
Accusations. Threats. Told repeatedly what a sinner I was. That I was “no good.” “Undeserving.” “Ungrateful.”
So I asked to leave. I told them, “Since you clearly dislike me and don’t want me here, why should I be here? You’re treating me badly. This is abuse.”
“We don’t want you escaping this place,” they respond. “And we don’t want you yapping to anyone. We don’t want you exposing us.”
And so, the abuse worsened.
I haven’t been the same since.
What happened to that breast cancer lady? I guess she’s in Heaven. Heaven for folks that die tragically of breast cancer and are remembered and loved forever as Good and Very Well-Loved People. Me, I’ll die remembered as the Girl that Starved Herself Because Obviously No One Gave a Shit. They sure drove that one home. Hospitals have a way of doing that.
See ya later.
My comment, as published in the New York Times
I have never before commented on any of their articles and I was so certain that my comment would be turned down that I immediately copied and pasted what I had written onto a document, so that I could paste it up here for you guys. However, I was pleasantly surprised to see that my comment was approved!
Hello, world.
Reflecting on the past few months: severe anorexia nervosa and subsequent abuse in a hospital
I guess this is a story of how I got better from anorexia nervosa, in a nutshell. It’s not a pretty story about a horse farm.
While cleaning out my computer today, I opened a few old video files and watched them. One was done not long before I entered the hospital last summer, and the other was shot only a few days after my return.
I am not at all surprised at what I saw. Before the hospital I was rather “out of it,” seeing as I was starved, rather spaced out and in my own little world. I didn’t talk about starvation at all, but of course I appeared rather shockingly thin. I didn’t show my full body but it’s quite clear just looking at my face. I never look like that unless I’m “bad off.”
However, I appear to be enjoying myself. I showed some of my belongings to the camera, dumb little things, then picked the cam off the computer and showed the viewer a peek at little Puzzle. I laugh frequently, too, and seem surprisingly carefree considering that in the back of my mind, I assumed it wouldn’t be long before I would drop dead. Also in the back of my mind I was panicked thinking that at some point, I might get “caught” at what I was doing, and sent to a hospital. I was scared, because I’d been abused before, so I had no intentions of showing up at one again.
So what were my options? I figured my two choices were to get “help” or die. I dreaded what I’d seen of “help” and didn’t want to put myself through all that. So I figured death was the better option.
I hadn’t considered the alternative: eat. Yes, eat. That would have solved everything. I guess if I’d realized just how badly I needed to avoid hospitalization on all costs, I would surely have seen things differently. I knew hospitals were bad, but my experience that began perhaps a week later, August 12 through 22nd, at Mount Auburn Hospital was by far a worse nightmare than I could ever have imagined.
The other video I am doing from my bed. I was so physically ill after the hospital that I could barely do anything except lay in bed and cry. I was told to go to a day program, but this was out of the question because I had so much edema in my lower body. It went right up from my huge feet to my bra line. You could make dents all the way up my legs, on my buttocks and even into my stomach. The kidney doctor said he wanted me in a lying down position with my legs raised high, at every moment I had that I didn’t have to be doing something else. This isn’t the same as “bed rest,” as it’s known, when a patient is instructed not to leave bed due to dangerously low blood pressure or another danger. I wasn’t in that kind of danger like that, but I was instructed to lay down to reduce edema.
I was also feeling very sick when I did the video. After all, I was recovering from acute renal failure. It takes a long time to get better after that.
But there was one more thing I noted that in fact overwhelmed me. This was the loss of dignity I felt following the horrendous abuse done to me in the hospital. You can’t undo that loss overnight. I was alternately tearful, shaken, and full of rage. I was also physically exhausted. You can see that the incidents of abuse are still playing like movies inside my head. I appear ed distracted and pummeled by these memories, and I had a lot of trouble putting a sentence together.
This, to me, is tragic. Sure, I had a lot of weight restored, but the damage from trauma ran deep.
Today, I don’t feel those things half as much. I was crying all the time after the abuse, and to make things worse, there was no one I could talk to about it. People couldn’t believe a top notch hospital could be a prison like that if someone is being treated for a serious medical condition. I was not in there for psychiatric treatment, and in fact received no counseling. I was only force-drugged. I was belittled by a majority of the Mount Auburn personnel.
One thing helped me, though, and I can see this clearly now. I was determined to meet others that had also been abused in hospitals. I knew I hadn’t made up or imagined or incorrectly perceived what had happened.
Most people have the capability to distinguish caring from abuse. No way were these abusive personnel doing acts of caring. This was abuse. I have never questioned my judgment here. Not once have I questioned the validity of my perception of what happened at MGH in 2011.
Some were convinced I was psychotic and “imagining things”…of course not. I wasn’t so “out of it” from starvation not to recognize abuse. I was a good girl and took an antipsychotic as instructed for a period following the abuse at MGH, and yet I continued to maintain everything I originally said, that I had been cruelly abused. Why should I not? All of it indeed happened and no pill will change the facts.
Now we know about the severe abuses masterminded by Boston Children’s Hospital and Child Protective Services, I think more people are waking up to the fact that this indeed can happen. If it happens to vulnerable children, then surely, it happens plenty to adults.
It was the answer for me to find others that had had this experience. Together, we are working to make these horrors stop. Today, I don’t look like I did in the first video, because I am not starved. Nor do I look so devastated as I did in the second video. I am able to lead a productive life again, but it has taken time.
I have joined forces with the antipsychiatry movement and I don’t ever intend to see another shrink of any type, ever. I love the new person that I have become. I am free of mental health care. I am the rebel kid I always was inside. I am a former girl hitch-hiker who loves her dog, nothing more.
This Hunger Is Secret 