Seroquel crimes hit the NY Times! Finally!

Here’s the link in the NY Times, about a drug trial for Seroquel that was certainly corrupt:

This is yet another victory for supporters of the family of Dan Markingson.

Please take note also of the following post by Nancy Rubenstein Del Giudice, which has gone viral:

After Seroquel

There are so many comments it would take hours to read them all! I commented, too.

Readers of my blog have certainly heard my own Seroquel story enough times. I have learned so much more over the past few years about coverups with drug trials and about “off-label” uses of psych meds.

I can tell you the following:

I was put on Seroquel first by Dr. Michael Detke at McLean. I wasn’t fond of Detke, who was responsible for raising my antidepressant to insanely high levels, meanwhile throwing his hands in the air, completely clueless as to why my insomnia was worsening. I knew from the start that Detke was one of the worst psychiatrists I’d ever had, but I felt powerless to change this.

I’ll never forget how happy I was when, during an appointment, Detke told me he was dropping his patient load because during his final year of residency he was going into research. I can tell you I was having an awfully hard time staying awake during those times. I sat there with a blank face (as best as I could muster) then told him politely, “I’m sorry to see you go.” I walked out of there, and as soon as I was out of the building, I cheered. Out loud.

My next shrink turned out to be Dr. David Brendel. This was 1999, well before money and power got the best of him. He was known to be sweet and kind, and many remarked on his “boyish look.” He wasn’t a day over 30, most likely much younger, but looks can be deceiving. Joe was also relieved that Detke was gone.

I’ll never forget that first appointment with Brendel. I told him, by memory, my meds list. I used to amaze doctors because I could remember all the doses, and my entire history with a drug. I kept records myself besides. Doctors appreciated this because often, prior provider records were scanty, inaccurate, or out of date. (Nurses and therapists, too, appreciated it when they were stumped on how to spell the name of a drug. I always knew.)

Brendel wrote down the doses I told him. I’ll never forget the look on his face. Part horror, part incredulity, part shock. I saw him mouth something. Like whatever he was thinking he was certainly going to keep to himself. However, the look on his face, and his tone of voice was rather revealing: “That Detke is incompetent! What the fuck?”

I was off Effexor as quickly as we could do it. He told me that by all  means, the drug should be tapered more slowly, however, he felt it was imperative that I get some sleep! I ended up with no particular withdrawal effects. I was so happy when sleep returned! I didn’t need therapy for insomnia! I needed to get off the drug that was causing it!

Meanwhile, Brendel raised my Seroquel to further improve sleep. I think I was taking 100 then, no more than 200 I’d say. Any sleep-inducing effect from the raised Seroquel most likely was the placebo effect, since Seroquel is known to be far more sedating at 25 than at much higher doses, but I don’t know at what dose increase the sedation begins to level off or even lower.

I was so happy to be sleeping at last! I was doing well, but I broke my leg November 1st. I learned that I had rather severe osteoporosis that had increased the likelihood of fractures. I knew damn well that I had missed periods from Risperdal, but not wanting to admit that I’d willingly taken that drug, I told people the osteoporosis was from my eating disorder.

Do you see why I did this? I felt stupid. I felt ashamed. I didn’t want to admit that a drug had caused so much harm. Weren’t doctors always right? So I thought. Nor did I want to admit that although my doctors were certainly aware that I had missed many periods from 1992 (or 1993) through 1995, I blamed myself for not speaking up loudly enough and not fully understanding the consequences. Anything but admit a doctor could make an error! No, I saw them as gods.  I sort of couldn’t speak up anyway, since 1995, when the missed periods became alarming, was when they started the ECT.

I didn’t actually see Brendel that many times, since I was laid up with my broken leg for a couple of months. After that, I had three hospitalizations between mid-2000 and the end of the year. At the end of June of that year, Brendel moved on and I was transferred to another doctor.

The first was probably in June or July, 2000, at Mass General’s Blake 11. I was only there for five days and held in their “inner unit” (I don’t know the real word they used). I thought it was great because I had my own room with a terrific view. They allowed me to have my laptop and I kinda liked the privacy. I spent my entire time there writing and was never required to go to “group.” From what I recall, and in reflection, I think they realized that I didn’t need the hospital, that maybe someone had pressed the panic button unnecessarily. I don’t think they made any med changes.

The next hospitalization was at Norwood. That place wasn’t very good at all. It was run by the same company as St. E’s, Caritas, it was called. As soon as I got there I asked to be transferred to Mass General. The doctor said he’d look into a transfer, but whenever I asked, he said they still didn’t have a bed. I decided to stay put.

I ended up staying about eight weeks or so. They talked me into ECT. I continued it outpatient at McLean, done again by Dr. Michael Henry. The summer was drawing to a close. What happened was that I ended up so confused and disoriented from the shock that I stopped it. However, the next semester was starting and I felt that I was still so foggy-headed that I should take the semester off. Naturally, the shock wore off, since inevitably, any positive effect from it tends to be short-lived. By late fall I was hospitalized again at Newton-Wellesley.

I’m guessing that my Seroquel dose upon entering was 200 or so. For whatever reason, the doctor I had, a lady doctor whose name escapes me now, decided I was too thin. I think this woman was on a power trip because it was almost as if she were seeking out ED patients to do tortures on. She had been a former director of an ED clinic somewhere.

I had never been force-weighed before. It was so humiliating. They did it Monday, Wednesday, and Friday. It was done in a johnny.  They forced me onto a meal plan and eyeballed me while I ate. I wondered what they were trying to prove while doing this.

I usually pee after eating. I have diabetes insipidus, remember? So I pee frequently and in large quantities (in a toilet, FYI). So I thought nothing one day of going to the bathroom, as I always did, after eating.

When Joe came to visit that night, they wouldn’t let us visit off-unit as we usually did. The charge nurse, Phil, had a rather odd look on his face. Like I’d committed some terrible crime. Joe kept asking what the holdup was, why couldn’t I get the usual pass? I recall there was no explanation at the time but I was told that the nurse would speak to me about it later.

I’m trying to recall the nurse’s name, but I’m at a loss. Gloria? No. It was somewhat ethnic-sounding, Italian or Hispanic, but I wasn’t sure. It will come to me. She was petite and dark, rather pretty, with a strategically-placed dark mole on her face. Why do patients always notice moles on staff? I’ll never know.

She told me the following, “I noticed you went to the bathroom right after eating.” I agreed, I had. What was she getting at? I hadn’t gone in there to hang myself. What was the deal?

She accused me of vomiting up my meal. I told her this wasn’t true. She accused me of lying. After that, they kept my bathroom door locked. My poor roommate had no clue why. The doctor went along with it. Once, I had to go pee badly, and begged to be allowed to do so. That doctor instructed the staff, “Watch her like a hawk! She’s VERY sneaky!”

That as so humiliating, since I had never vomited, and was telling the truth. I hated what they were doing to me. It was now the year 2000, and I’d had ED now for 20 years. So they actually thought a brief course of forced ED “care” would cure me? Apparently so. I recall one day this doctor announced to me, “We’re raising your Seroquel.” I went along with it. Why should I doubt a doctor? They knew best, didn’t they? I took the pills when they gave them to me. My dose was raised to 600.

I used to see them all coming out of their meetings. They’d finish up their conversations right there in the hallway. I happen to recall this doctor rubbing her hands together and saying, “She’ll never know.” I had a feeling she was talking about me, because she was speaking to the other members of my “team.” I believe this included the medical student. I remember watching them, wondering what the heck this all  meant.

I knew, by staff’s reaction when I stepped on the scale not long after, that they were pleased that I was gaining weight. I didn’t say a word. I wanted to be polite. I wondered, though, why it was that my weight shot up ten pounds so quickly. I was immediately pronounced “cured” and let out of there.

I only took one class the next semester, Spring 2001, but did well. I always did well for whatever reason. I had an excellent instructor who pushed us hard.  I published Breakdown Lane, Traveled, on her encouragement. This was a compilation of my own writings. The book was released in 2002.  Meanwhile, I had a new psychiatrist and new therapist.

I wondered why I kept gaining weight. By the end of 2002, I’d gained 20 pounds, with no real explanation. I felt sluggish, too, and was having trouble writing. I never admitted it to anyone. I didn’t even tell Joe. I wondered if I was losing it. I was scared that maybe I was somehow weakening or losing my intellectual ability. My grades stayed good, so no one really knew how frustrated I was. By graduation, I weighed 130 or 140. My self esteem was in the pits. It was right after that that Joe died. It was hard to eat, but still, I kept gaining. By the beginning of grad school in January 2004, I was decidedly chubby, for want of a better word. It got harder and harder to exercise. I can’t say I flourished during my first two semesters. I got by. I was so frustrated, worrying that I’d never again be the writer I once was.

I was hospitalized in the middle of second term, that fall, October I believe. This was when my dosage was raised to 900 daily. it was supposed to be 800, but the doctor arbitrarily changed it to 900, stating that it would be “fewer pills to take.” My grad school allowed me to take an extension on the semester. I had the option of coming to the winter residency. I did so, 50 pounds heavier than I had been six months earlier. I was at my highest weight, around 200 pounds (I’m 5 foot 1 inch tall).

I felt like a complete failure. I was miserable. During that residency I thought more about my weight than I did about writing. Twice, I was bullied by other students over my weight. These were not writing students, but students from another program.

“What are you eating? You shouldn’t be eating that!”
“All fat people are pigs!”
“Yeah, pigs that can’t control themselves!”
“That combination will make you fat! Why don’t you listen?”
“She takes antipsychotic drugs! Anyone that stupid deserves to be fat!”

Yes, these were fully grown adults, several of them, bullying another fully grown adult.

I was so ashamed. I wanted to cry, but didn’t dare. It took me years before I admitted this to anyone. People told me that I should officially inform the school that this had occurred, but I have yet to do so after all these years.

I rarely left my apartment. I hid in shame, trying to cover myself. Once, I made the mistake of going to get my mail when others were hanging around the mailbox. One loud lady said, “What happened to Julie? She got fat!” She said this so loudly. I was so embarrassed that I bolted out of there.

Why was I fat? Why? I went online and found out. It was the Seroquel!

During Dr. Pearson’s maternity leave, my knee gave out from the strain. I couldn’t even stand up. I will never forget what I went through. I borrowed  a wheelchair. The sides of the wheelchair popped apart because I was too fat for it. I spent three months totally alone, a shut in, unable to walk at all.

When Pearson came back from maternity leave, looking all toned from multiple sessions at the gym, I hobbled in there using a walker. I’ll never forget her words, “Julie, I didn’t know you use a walker now.” What? Did she expect me to stay on the drug until I couldn’t even get out of bed?

I told Dr. Pearson that this was it. I HAD to get off Seroquel. She insisted I’d become “unstable.” But since I was at an unhealthy weight, didn’t it make sense? I was so unhappy.

She tapered me off, putting me on Thorazine instead. I’d say I didn’t have any problems getting off Seroquel. I was so overjoyed when I finally started to see the scale go down. M knee healed.  I was so happy. I noticed I could write again! I returned to grad school in the beginning of 2007.  I kept losing weight. I think of it as “revenge anorexia.” By graduation in mid=2009, I weighed 95 pounds.

That’s my Seroquel story, a rather long version. I was shocked that in 2013, Dr. Pearson insisted I’d been “so happy” on Seroquel. I was shocked to hear this. I realized that she had long ago stopped listening, and that our relationship had eroded. I didn’t want to see her anymore. My last session, after 12 years, was July 10, 2013. I felt free. Free of her, but not free from all the other ordeals I had to face.

Check out this poem….anorexia story…and my commentary

This is a poem I first heard in 2003. I cannot copy and paste it here due to copyright laws, so you’ll have to see the linked page yourself, which will open separately:

The poem is so sensitively written that I am awed. I read this poem during the time between undergrad graduation and the beginning of grad school, not long after Joe’s death.

Right before Joe died, I asked him his opinion about my weight. I told him I had no clue why I continued to gain weight no matter what I did.

I asked him, “Do you think it could be the meds?”

He said, “I don’t know. Maybe.” He knew I was deeply disturbed about what was happening.

January 2004 was an unusually cold winter in northern Vermont, where I attended my first residency. My weight was increasing rapidly at that time. As a result of rapid weight gain, I was always overheated. It had something to do with estrogen fluctuation.  I didn’t even bring a winter jacket with me and didn’t need one. It got down to -25F one night. Still, I wasn’t cold.

At my third residency, in January 2005, my weight had reached its peak at close to 200 pounds. I am only five foot one inch tall.

Soon after, one knee gave out and I spent three months using a wheelchair, barely able to stand up.

My psychiatrist, Dr. Kimberly Pearson, returned from maternity leave. She had no apparent “baby fat” and in fact, appeared to have been working out daily at the gym. I was then a “cripple.”

I recall exactly what occurred when I saw her. She came out to tell me she was ready for our appointment. She said, nonchalantly, words I’ll never forget:

“Julie, I didn’t know you use a walker now.”

So she saw my condition as permanent.  Inevitable. Consequence of much-needed  drugging. It didn’t matter, so long as I was compliant. I’m sure she figured I’d die young anyway. Statistics supported that those of us on psych meds die 25 years before the rest of the population. Just another mental patient.

I was livid. I tried to retain my composure. She didn’t even help me carry my stuff into her office.  I dropped a paper and struggled to pick it off the floor. I nearly fell. I grabbed onto my walker, and steadied myself.

I’m not sure at which point I finally figured out that the drug Seroquel had caused the weight gain. I was scared, but finally I demanded that Dr. Pearson take me off that drug. She balked at the idea. She said I’d be “unstable.”

Over the next few years, she said that every time I begged to get off a drug that was harming me. Even Trileptal, which caused me to be unsteady on my feet, and Lamictal, which caused double vision, and finally, complete physical collapse.

“But you’ll be unstable.” Yeah, of course, one is stable six feet under, am I not? I won’t move again. Stable as can be.

Once off Seroquel, my weight dropped. I know now that I am not the only one whose  return of anorexia nervosa was an act of revenge against weight-gaining antipsychotics. I was around 50 years old and this was the worst the anorexia had ever been.

I’m now 56 and have narrowly escaped death a number of times since. No, not due to lack of Seroquel, nor withdrawal, but simply because the drug had wrecked my body. Anorexia was the great Fuck You.

Over the last few years of our “work” together, Dr. Pearson harped on how “happy” I’d been on Seroquel. Had she and my ignorant “therapist” that I had at the time, Dr. Louise Ryder, even been listening? I hated being overweight. Despised it. I wanted to cut the fat off my body every waking moment. Is that happy?

Maybe I was too drugged to speak out. At the worst of it all, I was on 900 mgs a day of that shit. For no real reason than the fact that I “tolerated” it. Or appeared to. Or maybe I wasn’t complaining.

Anorexia was a great way to complain. It made a statement. Don’t mess with my body, bitch.

I was coerced into eating disorders “treatment.” It did more harm than good. Every time they forced me to gain, I left feeling devastated, and even more worthless than before.

My weight’s okay now. But that’s in spite of “treatment.” I think in the end they wouldn’t have cared if I’d committed suicide. I wonder now if I had, if anyone would have understood why.

Following summer of 2013, I kept asking, “Why did they abuse me?” The question was never answered.  It wasn’t the weight that upset me, but the fact that I had been stripped of my dignity. But I wouldn’t satisfy them with my death nor would I stop writing and speaking out.

My revenge is that I am alive and doing fine. I see no shrink and take no psych meds. I am doing better and better. I am getting stronger the further away I am from “treatment.” I had the idea to leave the oppressive situation in which I was trapped.  Clearly, my “crazy” notion to ditch them all saved my life.

I’m glad those shrinks didn’t quite drive me to suicide. I was hanging in the precipice for a while, though, due to their abuse. I’m glad I waited it out until I could escape that horrendous nightmare.

I want to remind anyone out there that while so-called “mental illness” is claimed to be “for life,” many realize this isn’t necessarily true. Likewise the consequences of psychiatric abuse don’t have to be forever, either.

True, my kidneys are at about 1/3 functioning, but the rest of me has only grown stronger to compensate for the loss. I even like myself. A lot. I especially like my rebellious spirit, which I suppose I always had. It was buried all those decades.

I’m okay now.

I love you all, Julie and Puzzle

After Seroquel: Response to an article by Nancy Rubenstein Del Giudice

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.

Writing like mad

You guys know that once I get going, I write like mad.  Or, maybe I shouldn’t say that. Maybe “mad” is one of those words that’ll get me into some trouble, eh?

Must’ve been the year 2000.  I was at Emerson College.  I’m guessing it was the spring semester.  I was getting more and more proficient with my writing.  This was right after I broke my leg, and before I wrote Breakdown Lane, Traveled.  BLT, as I later abbreviated it in my own mind, I self-published in 2002. The spring of 2000 I took a 500-level course in memoir writing.

These 500-level courses were hit or miss. For me, since I was a serious, hard-working student, I knew I was taking my chances signing up for a class that may be filled with grad students or undergrads or a mix. Why? For whatever reason, there’s too much leeway for laziness in these mixed classes.  I’d run into this slacking before, and I found it frustrating because I wanted to work hard and no one else was doing a darned thing.  We were there to learn, weren’t we? I guess some folks knew they could get away with slacking, so they did.  Some 500-level classes worked out fine for me, with everyone doing what they were supposed to do, and others were a major disappointment.

This class that semester that I took, in the spring of 2000, was one of those slacker classes. The instructor would ask a student, “What do you have this week?” and the student typically would shrug and say, “Oh, I couldn’t get it together, maybe next week.”  I got so frustrated and wanted to shake these students. A couple were rude and whispered to each other while the class was going on. They thought the instructor didn’t notice, but of course he did. I knew he was just as frustrated as I was.

I worked like mad (to use this word again) for the class and came up with a memoir of sorts.  I believe at the end of the semester I had so much material that I nearly had a completed draft.

Our instructor said one thing that I recall vividly.  “Julie, your memory is amazing.  It’s photographic. You have an amazing ability to recapture scenes from anywhere in your life and then put them on paper as if they happened yesterday.” I had no clue that there was anything unusual about the fact that writing memoir came to me naturally, as if it were one of those genius talents a kid is born with.

Now, I know.  I had the writings, quite a bit, but the semester ended.

I wrote the entire draft of BLT in the spring of 2001, a year later. The instructor of a literature class and I had hit it off well. She encouraged me to put the whole thing together, and so I did.  I remember using some of the bits I had written for the memoir class, some old stories, but much was new material.  She knew I was an exceptionally hard worker and that I had plenty of motivation do this massive project.  We stayed in touch after the semester ended, but after that, I guess her other job at another college was taking up a lot of her time, so she wasn’t working at Emerson by the time I self-published BLT.

Not that anyone was happy about the fact that I’d used an on-demand publisher.  So few were doing things like this back then.  It was weird the way I came up with so much opposition.  It was the first time I’d come out publicly and said, “I was a mental patient.” Once you come out with it in publication, you are out of the closet, and that’s irreversible.

Emerson College’s faculty  showed minimal interest in the book. Sure, the book was sloppy, loaded with all sorts of technical errors I didn’t even bother to weed out.  I was only an undergrad and didn’t know better.  It seemed that the Writing, Literature, and Publishing department at Emerson balked at the idea of a student self-publishing something, anything at all.  They refused to publicly acknowledge that the book even existed.  Maybe a few were ashamed that a mental patient was in their midst.  I know there were many faculty that admired me simply because I was an excellent student, eager to learn.   Things were a little awkward between me and the department after that. Of course, I was cooperative and polite around everyone. But I always wondered why they had ignored what I had done, while other students were being held up as shining examples, high achievers from Emerson, even while they are still in school.

Someone, an administrator of the Adult Degree Program was thrilled, actually, that I had been so brave as to come out with this story. Whoever it was found out I had a near-perfect grade average, over 3.9, and I guess decided maybe I wasn’t such a dummy after all. They were behind my project and even interviewed me for one of the little-known Adult Degree Program publications.

I believe it was the year 2002, the year that BLT was published, that I was noticing weight gain from Seroquel. I had no clue the Seroquel was causing this gain.  My self-esteem was beginning to falter as a result.  I felt sluggish, too.  My high motivation slipped downward during that year and into my graduating semesters as well. By the time I graduated, I was extremely distraught over my weight and ashamed.

Then, Joe died.  In a flash, gone.  We had spent hours together every day.  He was my one rock, my one friend, and that was all I thought I needed.  Then, with no warning, I was alone. The tables turned.

Life is not what it seems.  Your world  and everything you know in it can disappear just like that. That’s what happened to me.

Much of my motivation and my drive to achieve were buried for a few years. By 2005 I had doubled in size.  BLT was forgotten.  It wasn’t until I was off Seroquel and returned to grad school in 2007 that I was able to work like mad again.

You guys know about how I developed anorexia, and as a result underwent what was by far the cruelest “treatment” I had ever known.  They almost got me, drowned me, shut me up and locked me up for good, but no, I’m alive still, and free, and writing like mad.

I am sure ready now…again. The world had better watch out. I won’t let myself be buried again.

If she only had known – A letter to Dr. P, my former shrink who may even in fact read this someday

She was giving me those pills
And every day, I asked Joe,”What is happening to my body?
I don’t know why I keep gaining weight.”

“I wish there was something I could do,” he said,
“I don’t understand it, either.  I have never seen you
gain weight like this.  You know
how guys are, putting the pounds on all winter,
and then poof!
in a summer, it’s gone.”

And I think about now.
Poof!  A summer, gone.

Dr. P, you thought I was happy on that pill?
No, you were under some delusion.
All I could think of was that stupid weight,
And how badly I wanted to take it off.

I was a mediocre student
Because I never gave a thought to school and writing anymore.
I was focused on the gym now
And calorie-counting.

I spent over twenty hours each week at the gym trying to take the weight off.
People looked at me and I was the fat girl at the gym.
One day, I did the bike real fast, working up a sweat, and got a clap from people.
I felt so humiliated I never wanted to go back,

Finally, you took me off the pill.
And the pounds came off.
My writing took off.
And here I am.

I listened to the music I worked out to during all those years,
My “fat music,” which I’ve got on right now, right here in my apartment,
With tears in my eyes right now.

I can’t believe that during our last session, you were so delusional
As to tell me I was happy during my years on that drug.

After I finally exercising my butt off too much,
My body couldn’t take it anymore,
And I became injured.
I spent three months in a wheelchair
And if I was lucky, I occasionally could hobble using a walker.
I had nobody to help me out.
I cried every day.
I had no transportation except taxicabs about once a month.
They were too expensive so I didn’t get to go out.

My therapist’s office wasn’t wheelchair accessible.
Would I pay $1,000 to go back to those days now?
To be drugged to death, to have a therapist I disliked,
To have a body I couldn’t stand,
To be in physical pain every time I stood up.
People took one look at me,
The fat lady struggling in her walker,
They figured I was “mentally retarded.”
So they discriminated against me and
Helped me with things like dialing numbers and
Filling out forms.
Hey, I have a brain in my head.
Bug off.

I don’t think I want to go back to being drugged, Dr. P.
And you thought I was “happy”?

I think we have a misunderstanding.

Perhaps including a current photo of myself might be an appropriate way
To end this letter, but I’m feeling shy right now.
Let me only say that a picture is worth a thousand words.
I’ve trimmed down a bit.

And Joe is gone, too.
Ten years now since he died.

As he said,
In a summer, poof! You can be gone.

As fragile as the candles we light in church,
Which can be blown out with the slightest puff of wind.
These simple daily reminders
I felt like one of those candles while walking Puzzle this morning,
Feeling like I could be blown out by the wind.
Feeling like this tiny dog could pull me over.