This has been on my mind for a long time. I believe that this dream can become reality. In fact,
It can indeed become reality sooner rather than later. It is my dream to implement this and see it working for real during my lifetime.
In my memoir, This Hunger Is Secret, if you make it all the way to the end and read the “Epilogue,” you will read of a place I stayed at that wasn’t far from the banks of the Charles River. I recount in this chapter, which took place, in fact, in October 1997, that I made a habit of walking by the Charles, feeling all alone, and fed Wonder Bread to the ducks. I wrote of hoping for brighter days. Shortly after that scene in 1997, my life indeed took a dramatic turn for the better.
I never named the place. I only referred to it as a “respite.” This, in fact, was a DMH, that is, Department of Mental Health facility. The DMH was run so differently then, as was this respite facility. The place has since changed location, changed management, changed staff, and the entire program has become just that, a program, with rules and regulations that never would have worked for me back in 1997 and I’m sure wouldn’t work for me anytime.
However, note that I saved my story of the “respite” for the “Epilogue.” I don’t believe I have ever read this chapter aloud to an audience. I know that there are some chapters of This Hunger Is Secret that to this day, I cannot read even silently and alone without becoming tearful. The “Epilogue” is surely one of these chapters. However, I am not at all afraid to read it aloud to an audience in a dramatic fashion and have real feelings just like anyone else. For godsakes, don’t throw pills at me or tell me about deep breathing. I am a writer and I enjoy reading with passion. Passion is a wonderful thing and no one likes to go to a reading where the reader reads in a monologue as if they are on drugs.
If you Google a place called Rose House in New York (I believe the town is Carmel) or a place called Afiya in Northampton, MA, which I’m not sure exists anymore, you might see that these places are like respite places. You might bring up in your search the term “peer run alternative” or “hospital alternative.” When it was first presented to me that I should go to the respite place, I was told the simplified version by a rather unkind staff person at the hospital where I was at (it wasn’t McLean): “You are going to the respite, or you are going to the state hospital. You have no choice.” She was raising her voice and acting bossy.
I was scared to go to the respite. I thought it was just one more place that I would be shoved into, with more uncaring staff that didn’t listen. I was afraid I’d be isolated and lonely there and unable to make the phone calls I needed to make and practical matters and red tape would be overwhelmingly difficult. I thought it would be another lockup joint like all the rest. I feared I’d have my Social Security check docked for being away from home too long. There were other things I worried about as well. What about getting my stuff stolen by other patients? The last place had showers that barely worked and they flooded all the time. There was no bathroom privacy between patients and I had to brush my teeth in front of everyone else. Was the room temperature in the respite far too cold the way the last facility was? Was the roof leaky, too? Would I be able to wash my clothes safely? If the staff didn’t like me or didn’t listen, would they send me to the state hospital anyway? Why was I being sent there?
I balked at the idea. I refused at first. Then I decided I’d go anyway. I got picked up at the hospital by the nicest person imaginable. She conversed with me like I was an actual person and not a “patient” with a “diagnosis.” She didn’t pick me up in one of those “mental health vans.” This was her own car. I hadn’t ridden in a car in so long, only a “mental health van,” or an ambulance being transported from facility to facility like I was a dangerous criminal. After we arrived, she let me unpack and said my roommate was out but would be back later. She showed me around and we made plans to pick up my stuff from that yucky place where I’d been at McLean. She said, “No wonder you didn’t like there.” We laughed.
They had a staff office there that was unlike any staff office I’d ever seen. There was no bullet-proof glass wall protecting the staff from us criminally violent patients that might beat them up anytime. We never, ever got shooed away from the office as if they were having some secret huddle or as if they were having parent-teacher conferences there and us patients were only kiddies, not privy to their very mature and exclusive discussions about “diagnosis” and how delusional we were and how we “lacked insight.” Actually, I doubt the staff believed any of that baloney. These were real people that opened their office to meaningful dialogue with other real people and there was almost no delineation.
I’d say there was only one thing locked up: pills. I’ll tell you something. It makes a bit of sense. You figure they had some very short-term and also longer-term people staying there that took all kinds of pills and since this place was unlocked, not only could folks come and go as they pleased, but anyone could walk in, technically, if they knew where the place was located. We were right in the city, not in some exclusive isolated rural location. You’d figure it made sense that people’s pills should be protected from outsiders while you were living there as an overnight guest. After you left, you were responsible for taking care that they didn’t get stolen from you, unless you actually wanted someone else to mind them for you. There were some that made this choice, and still others that felt perhaps they wanted small quantities at first and then larger quantities. Always, it was a joint decision.
If I recall correctly, there was room at the place for five people to stay there. I had a double and there were two other rooms where one guy stayed and one gal stayed and I didn’t know anything about anyone else that was in the program. We had very little in common as far as I could tell, although the other patients seemed rather nice. It was just that they had their own issues and I had mine.
No one nosed into anyone else’s business. There was no reason to do so. There was no gossip between patients. There was no formation of cliques, even when other patients came through short-term. I’m positive of the reason for this. It was because of the huge amount of individual attention that the staff devoted to each of us individually. Also, we never had “group therapy” and there was no “cookie cutter” approach. We did sometimes share meals together and at these times, we conversed. We discussed rather universal issues rather than personal difficulties. I loved that there was no babyish group therapy. Sometimes, we talked about an upcoming storm. If someone had heard that one of the local buses was delayed or that we would need to prepare for rain that day, it sure was nice to know. That October there were many storms, in fact.
I was still having panic attacks, but this year, 1997, was the only year of my entire 3+ decade history that I had these. They were rather severe in terms of the hyperventilating and I’d get so sick that I’d get a migraine and once threw up from the resulting headache. The panic attacks often would go on longer than 45 minutes, too. These stopped rather suddenly not long the following year. I have no explanation except the following:
Believe in the possibility of “It might not be forever.”
The same goes for the mysterious OCD I had. That, too, disappeared after a year. The supposed OCD I had consisted of compulsive housecleaning. My hands were a wreck from it. Most likely, both the compulsive housecleaning and the panic attacks were treatment-derived “illnesses.” You figure the other place (McLean) had shocked me 30-40 times and not listened to me and not cared. Of course, I developed some weird ways to deal with that abuse. Get me away from abuse and it all went away.
In brief, the respite served as the following:
It removed me from the abusive/oppressive situation (McLean).
It provided temporary assistance.
It restored my dignity.
That, my friends, is how to get well. That’s how you get better from ANYTHING. That’s how you leave a bad situation and don’t go back. That’s how you get back on your feet again and LIVE. Guess what I did? I went back to school, that is, college. Today, I have my master’s degree and I’ve written seven books. I’ve never, ever set foot in the state hospital and I have gone from taking three antipsychotic drugs all at once to ZERO.
No, don’t go off them cold turkey. Most people will get very very sick if they try to do something like that. Here’s what I advise: Know yourself. Talk to others. Then make a decision as far as the meds go. You can always change your mind, too.
So this is my dream: I want to set up something like that. Only this would be for eating disorders. Yep, a respite place for eating disorders. The staff at the respite where I was were not so-called “peers.” Actually, they were crisis workers. They were wicked nice. But at this place I dream of, every single one of the staff would have LIVED EXPERIENCE with ED. Our job wouldn’t be to treat the patients like kiddies or to monitor them. Guess what we’d do?
Listen. Guess what I never, ever got at 99% of the lockup joints I was at. Listening.
Instead, I got bossed around and talked down to like I was a kindergarter and told I had “no rights.” Oh, I had to sign myself in, too and my stuff got searched. You’d think I was a criminal. I would say stuff and I wouldn’t be believed. I had no privacy. I was told I had to go to “groups” which were like first grade. No wonder I never got well. It was a huge insult.
So there would be so much individual attention. You could come there and talk to staff and tell them what was REALLY bugging you. Imagine that. Without fear of being locked into a room by yourself for hours, or force-drugged or told “times up! My pager just went off!”
So, I have a dream. I need to run this by some people. In my lifetime? I can only hope. There’s a sore need for this. Not to keep people out of lockup joints, but because my dream is that there IS a better way.
Love and understanding.
Please don’t get into this situation. I made the mistake of going to a VERY manipulative and controlling therapist. I went twice a week. She convinced me that her way was the only way and that I wouldn’t survive without her. Because of her, all the friendships I had remaining were lost or seriously damaged. So this isolated me from society. When finally I WOKE UP and quit her, I found myself entirely alone. What I must do now is to rebuild. Find others. I am slowly reaching out again. It is extremely difficult.
I quit this therapist in March 2012. Two years have passed. Here’s my reality today:
I attended a protest in Boston on Monday the 24th of February, and on the 26th a friend of mine contacted me via Skype. We had a pleasant and enjoyable conversation. Since then, I haven’t had any spoken conversations with anyone, except brief exchanges at cash registers and of course I paid my rent and went over to the maintenance office briefly to make a request. I believe I received a call from a telemarketer but I hung up quickly, saying I wasn’t a homeowner. What was this person selling? New windows? Chimneys? I stopped by at the post office and joked with the dudes at the window for about a minute. This is my reality, sad as it is. Eight days of no meaningful spoken conversation.
Sure, messaging is okay. But it’s not the human voice. In a way, it’s a cop-out to me. I think people don’t really want to talk to me so they message instead, or they simply don’t communicate. Some folks pay by the minute for their phones, true. However, many people don’t want to speak to me cuz they consider me a nuisance. I think that’s sad. No, I’m not shy, I don’t have agoraphobia. I don’t even fear public speaking and I’m dying for an open mic opportunity.
Go back to “therapy”? Forget it. I won’t pay a person for conversation. I’m not that desperate. That’s prostitution if you ask me, cuz people should converse, share, give eye contact, and exchange ideas for free.
This evening I’m going out. That’s definite and I’m looking forward to it. Real conversation. In person. Dialogue. Exchange of ideas. This is awesome. Gimme a bit, gotta shower and get ready.
Eight day…..Jeez. This is a crime. No one should live like this. I pick up after Puzzle. I don’t litter. I’m not a racist and I don’t park in handicapped parking spaces and I hold the door for elderly people.
I’m gonna have fun tonight. See ya!
It will open in a new tab. What do you think?
Nancy’s wonderful article appears in the online publication, Mad in America here:
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.
Wanna help PENGUINS? Yep, you can knit for penguins! Here’s the link:
I’m listening to the audio supplied on the link (yep, real Aussie accents) talking about these ADORABLE birds that really will wear those sweaters you knit. Now if your doggie has ripped apart that sweater you knit for her the instant you put it on her after months and months of stitching, restitching, swearing your butt off and a zillion dollars spent on yarn, here’s your way of getting revenge on her and making her plenty jealous: make a two-zillion-dollar sweater for a birdie half her size!
I think she’ll get back atcha plenty. Next time it’s hailing out and it’s walk time, she’ll take 55 minutes circling your neighborhood ten times, dawdling till you’re soaked, twirl around 50 circles right smack in the middle of the nicest, most expensive lawn in the neighborhood, and then, finally poop. Of course, it’ll be all mushy and require ten baggies. They’ll leak in your pocket and that’ll be the day you’re wearing that one jacket that’s DRY CLEAN ONLY.
What did I tell you about bad luck? Why did the Titanic sink? Bad morals? It wasn’t trying hard enough? It wasn’t ready? It lacked insight? It refused treatment? Naw. The Titanic sank for one and one reason only: It hit an iceberg.
Wouldn’t you? Let’s face it, this has been the Winter from Hell. Ugly snow, ice, slush, surely nothing pretty about it. Even the snowmen have scowls on their faces. The stuff gets dirty the minute it hits the streets. Tracked right back into my apartment. My vacuum breaks every time I try to use it. My dog can’t find a potty anywhere. Can yours? Yellow snow….I guess it’s right smack in the middle of the sidewalk these days. You can’t get the sand and salt out of your shoes until spring hits. When the hell will that be? August? Then winter will come along again.
However, I’ve got the cuddliest little dog in town. She’s the most awesome ever. Last night she curled up right by my tummy. She snuggled up to me and the only thing between us was my t-shirt I guess. I could feel her heart beat, our two bodies together. Her dreams and mine, except she was asleep within a minute of curling up, and me, it takes a few minutes longer. Then, winter and its ugliness no longer mattered anymore. Not that anything ever does, or did anymore.
I’d love to post the intro to my new book, but I think I’ll keep it to myself for now. I’d love to do a public reading soon. I think I need a venue, an open mic somewhere. I’ll figure out something exciting to read. Something really sparkling. I’ll letch’all know ahead of time. Way ahead. I’ll give you all at least a week heads up. I’ll read on nice popular topic too.
It’ll be place with good parking, T accessible, for sure, but you might be resisting arrest, and then sleeping in a bug-infested youth hostel the night before in order to get there. Never mind waking up the next morning to find out the gas has been siphoned out of your tank…oh, didn’t I say you get a few extra required vaccinations? Pass through a security station and get x-rayed? Then the strip search before entry. They sure want to screen for crazies…you gotta pass the psych exam. And show your ID to prove you’re you, if you can even remember after the shock treatments they give you. They’ll take some blood to make sure you’ve taken the right meds and not any illegal ones. And don’t forget to leave your kids with them…permanently…not that you’ll have any choice.
Um…no, I think if you went THERE, you have stuff mixed up a bit. You’ve got the wrong address. Don’t go to where the shrinks are. Come to my spoken word event. I’ll find an open mic somewhere and then let you know where I’ll be. Soon.
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.
Please “like” and “share” the following link if you have a Facebook account, if not, the text is below…and my commentary, as usual….below that.
“At 14 years Michelle was bright sensitive child, a straight A student, but then was diagnosed with early schizophrenia at age 14. Her extreme mental and emotional problems took her life, her personality, her dreams, her dignity. She now believes she is a “retarded abnormal subhuman” with no quality of life.
“Doctors and social workers look through her. They see her as a label, not a person. She has been on every medication possible. Zyprexa’s side effects made her gain 300 lbs. in one year. Then it was discontinued because she was pre-diabetic.
“During her lifetime Michelle has been hospitalized over 30 times, often 100′s of mile away from family and friends with no Ronald McDonald house for me. At Merced California hospital her daily activity was to go walk in the graveyard. I have been her only caregiver and provider as she has never lived independently.
“Broken relations with self, society, family – this is the essence of receiving a psychiatric diagnosis. With no purposeful work or activities, she is brainwashed that there is NO Hope and will have to take drugs the rest of her life which destroy the mind, body and soul.
“We have witnessed many friends in their 20′s 30′s 40′s drop dead over the years from side effects, overmedication or horrific withdrawal. One young man jumped to his death a few blocks from the hospital after being denied services. Michelle has many, many times – wracked with unbearable emotional pain — been denied services and left to walk home in her jammies barefoot in the middle of the night, totally vulnerable.Many many times when she REALLY needed help she did not get it as no “crime” had been committed and no one was yet hurt. Police would laugh at us and tell us that we liked “to fight.”
“Lack of basic services, being hurt and afraid CONSTANTLY, taken advantage of, loss of dignity, inhumane treatment, discrimination, isolation, no voice in treatment, violation of rights, torture — these are accepted as the norm within the mental health system.
“I filed many grievances with the county and state for lack of basic services. My statement was “My daughter is like a drowning person, who, when thrown a lifeline , will l not touch it as she is afraid of it.” We won “services” that time.
“Four years ago, at the last grievance her counselor didn’t get her to court on time and we lost by default. I’ve written letters to the local paper titled “I can get help for my cat easier than my mentally ill daughter” but they didn’t print it. They refused to interview me or Shell and I was told by Paul Hurley with the Times Delta that lack of and inadequate mental health services was an “open secret.” I wrote to senators, representatives, mayors, governors, presidents, civil rights groups, lawyers, with a few replies for best wishes and a phone number but no end results.
“Then, in 2004, Michelle was sentenced to 90 days for small charges. Twice she was electrocuted by a TASER gun in Bob Wiley JAIL in Visalia, CA, WHILE SHE WAS PREGNANT and forcibly taken from her cell at least twice.
“Michelle spent 100 days in solitary with no treatment. Her charge? Being under the influence and resisting arrest. After serving over 100 days Michelle was involuntarily sent to California Patton State Hospital to “understand the charges.” There, she was locked up with murderers and rapists. She was then sent back to court, found guilty AGAIN and released. Total time for this? Almost 1 year. She was sent to Patton state hospital locked with rapists and murders. At Patton State Michelle gave birth to daughter Audri chained to a bed, and was not allowed to hold her own newborn baby.
“Michelle was a wonderful mother and she was happiest holding her babies, cuddling them, loving them. This was the happiest time of her life. Audri and Andrew were her whole reason for existing. After the birth of her second child she was given the wrong meds and she decompensated AGAIN. Then, she said an inappropriate comment to a social worker while in extreme emotional distress. CWS took her babies without a fight as she was locked in the hospital with no phone available and unable to speak up for herself. We have never seen the babies since. AudriAnna and Andrew were not abused, drug exposed nor abandoned. She was discriminated against and violated, for having a psychiatric disorder. She has never recovered from the grief. I call it legalized kidnapping.
“In 2002 she was hospitalized at Kaweah Delta In Visalia, CA. There she was assaulted with seven stitches to her face. In May of this year she was hospitalized at this same locked facility and assaulted AGAIN by another patient, this time receiving five stitches to her forehead. This month she was hospitalized AGAIN at this same facility I couldn’t even give flowers or balloons to Michelle she was shut away like a leper. I called her case manager and supervisor and didn’t get even a return phone call for five days. Michelle is now in a licensed group home and the last I heard she had been raped. She is now on Neurontin telling me she’s hearing voices again for the first time in many years.
“Housing is a huge problem as unlicensed , unsafe group homes cram Mental Health population into windowless rooms and move them at the landlords convenience. They suffer in silence as to speak up would not be tolerated and would be punished. Licensed group homes are rare.
“The MEDIA is guilty of generating misinformation and half-truths and misconceptions always portraying the MI as derogatory and dangerous. They laugh at them and point fingers. Would you laugh at a child with cancer? Psychiatry as we know it is not an exact science, often dangerous. My daughter is a human guinea pig.
“The Mental Illness System is broken and it doesn’t work. The discrimination against people diagnosed with psychiatric disabilities is shameful, talked about in secrets in the dark. The media portrays one suffering generally as to be pitied, a danger, one to be feared and not tolerated.
“The STIGMA and treatment itself are barriers. That must be smashed before the eyes of the general public so the community can understand and change old ideas into new methods of treatment, of healing. Lobotomies were inhumane and eventually outlawed. Electroshock therapy is a modern form of lobotomy. Ask ten people, “What is schizophrenia?” and I get ten different answers.
“Survivors need a voice AND choices in their own treatment, community based, family based treatment, compassion, Christian love, understanding. Gently guiding sufferers back to reality is a new form of treatment successfully working in the country of Finland. Dr. Jaakko Seikkula is pioneering and revamping the treatment of the people diagnosed with psychiatric disabilities, with approximately 80% success rate of restoring one’s dignity with minimal medication use. Canada and Australia are also working on more effective treatments. Our own Mr. Bob Whitaker is writing books on this tragic and terrible epidemic in our country.
“Med compliance has never been her problem. She does well in structured settings and can live independently with minimal supervision. There are many caring and concerned individuals here. Again, I wish to thank you all for coming and thanks to David Oaks for allowing me to share. As a MOM == Mother’s of MindFreedom – I urge you to support David and MindFreedom as his work is essential to end this living nightmare for our children. Mother’s of MindFreedom are uniting and breaking down barriers and searching for more effective treatment. We will never give up.”
God bless moms that never give up! Yes, MindFreedom does do wonderful work.
Yes, it is true that this abuse does exist and it is indeed commonplace, the NORM for mental patients, not the exception. This is the life we live. This is what is the accepted truth of our existence. You must submit to “treatment” to get well. Treatment is supposed to hurt.
I do not for one minute accept that abuse is justified or acceptable. Ever. This needs to stop. It’s time to speak out. Never allow someone to yap to you about “acceptance.” Acceptance of what? The status quo? The status quo MUST CHANGE NOW.
Okay, I weighed Puzzle the other day and she’s a nice healthy 13-1/2 pounds. She eats whatever I put in front of her and she’s happy and healthy. I weighed my printer. Why did I do that?
My printer seems to have no power to it. I plug it in and…nothing. I’ve tried all the troubleshooting and finally have decided the heck with it. The warranty is long gone. I recall that before, Lexmark offered me a replacement for a low price, and this is no longer an option. However, I can get an HP for not much more, and the HP inks are cheaper, on sale more frequently and easier to obtain locally. Not only that, if I am careful, I can get it delivered in a PLAIN BROWN BOX. Lexmark always sent their printers with “PRINTER” written all over the boxes in gigantic letters, ripe and ready for any thief to grab off anyone’s porch the instant it got delivered. How dumb is that? I’m tired of not having a printer and having to go to the library or staples all the time. This is wearing me out. It’s not worth the exhausting trips back and forth or trying to keep lists in my head or hand write them with my messy handwriting and pencils that keep breaking and pens that don’t work, when I can print out lists easier in an instant with a printer. We are so spoiled these days. But our rush-rush society kinda expects us to keep up with techno-whatever.
So I weighed my printer because I want to see how it stacks up to the ones I’m considering buying. I sure want the smallest one I can get. Not some giant clunker like the last two that you’d think should have been paying rent here as tenants! The current one is two pounds heavier than Puzzle. I’m not kidding you.
So, had I taken the advice of so-called “eating disorders specialists” and ditched the scale, I’d have no clue how much my little doggie weighs and no clue how much the clunker old printer weighs. I wouldn’t be sitting here chuckling away with you folks right now.
So what do we do? Is Puzzle scrawny and does she need to gain weight? Is her BMI “unsatisfactory”? Should we shove a tube into her, and if she refuses, threaten to call security?
On the other hand, which would you rather have snuggled next to you in bed: a nice furry warm doggie, or a hard, rectangular, mostly metal printer that doesn’t even work? Is this a no-brainer or what? Or do you want to sleep with that scale of yours? Mine is metal and it doesn’t snuggle too well. You could shove the scale between your mattresses instead of next to you, and then, once you woke up, you could write a version of Princess and the Pea about how you slept…that is, if you could sleep at all.
Maybe we should all try putting peas under our mattresses and see how much complaining we end up doing. Was the pea under the mattress the REAL cause of eating disorders? I’ll betcha anything it was. Latest research, folks…..
I did one of those “IM” things with someone at HP (this was in some very very very faraway land, I’m sure) to see if the printer they were offering me, that was sitting in my “shopping cart” would come in a plain brown box. However, the person said, “No, it comes with a giant photo of what’s inside right on the box.” Well, not quite in those words but almost.
Guess what I did? You guessed it. That shopping cart got emptied very very very fast. Got the big picture? Yeah, sure. Big picture plus nosy neighbors means that printer ain’t gonna get to its intended recipient, dudes.
Back to the drawing board. Or the dinner table. Pea soup, anyone? I can reach between my twenty mattresses. Gimme a sec.