Photos of me at different weights
I figure I’ve spoken enough on here about weight change, but a picture is worth a thousand words. And after all, I’ve been told so many times how I lie and exaggerate…so lately, I’ve been photographing stuff just to PROVE I’m not lying. It’s so sad that psych patients have to go to such lengths because their word is so often doubted, even if they are highly reliable, honest, and have excellent memories.
So….As I have told you in the past, the drug Seroquel made me gain an awful lot of weight and I was terribly unhappy with my body. Some of the photos of me at close to 200 pounds I am really not in the mood to put up here…they are “mirror” poses and I just can’t stand looking at them. I am wearing this horrible t-shirt I threw out I was so disgusted….and I could wear nothing but polyester pants. Wow I hated those clothes! I hated the way I felt in my body.
Now, I know what you are thinking. Body loathing is wrong. Well, quit that. I have the right to think whatever I want, and this is MY HISTORY. This is the past, and that’s my real story. That’s how I felt. I can’t change the past, and so I am reporting to you what went on in my head back then. Self-loathing.
I did have reason to be unhappy with weight gain, as it wasn’t safe FOR ME. I am 5’1″ tall. Even before I reached 150, I huffed and puffed while trying to walk even a quarter mile at any reasonable pace. At 197, which was my highest weight, one knee gave out entirely. I was too heavy to use crutches. I tried using a walker and couldn’t do that. So….I was “in a wheelchair,” as it is said…for three months.
The year was 2005 when I reached 197. I hated my body so much and I hated going to therapy, too. Certainly, therapy was doing me no good! I used to see Dr. Louise Ryder, supposed “eating disorders therapist.” Dang. She used to work at CEDC…but why? I didn’t see, even from the time I first met her, that she knew anything at all about ED. Here was the extent of her “advice”:
“One day at a time.”
“Accept your body.”
Oh, I guess she said…”This too shall pass” one helluva lot.
I think you can get that kind of advice from self-help books (or nowadays, off Facebook) quite fine, can’t you? If she’d been an effective therapist, she’d have said something like this:
“Julie, we need to get to the root of this weight gain. I’m going to call Dr. Pearson right away and see if you really need that Seroquel. You seem to be on a ridiculously high dose.”
But no…she only wanted me to cooperate and comply. Of course, I was totally compliant and it never occurred to me to question Dr. Pearson. Never! I never missed a dose nor missed an appointment. Oh, I missed plenty when my knee gave out.
After I got off Seroquel (by the way, the “withdrawal” wasn’t so bad as I was OVERJOYED to get the shit out of my body!) my weight dropped. Here I am at 175, and trust me, I DESPISE this photo…I hated the way I looked and felt that I was too fat!
Anyway, I have other photos. By 2008 I had lost a lot of weight. I had to work at it.
Here I am, just messing around with the camera:
I was 50 years old. I had been raped recently. But for whatever reason, for a few months, the memory was suppressed at the time. I think this was around the time I fired my therapist, Goldie Eder. I was sure something was terribly wrong, as she spent our entire sessions yapping on and on about her nieces and we never spoke about anything going on with me. She’s one of the two therapists I’ve had (out of over 20) who regularly fell asleep during sessions. I had to wake her up. She’d apologize, and promise to stop falling asleep, but she always fell asleep again. A couple of times, she said I was boring her. I guess she should have been listening when I told her I had been raped, eh?
Naw, you can’t see it in a photograph…so quit trying!
My weight kept on dropping. My feelings were mixed. I had hated being fat so, so much. I knew I wasn’t eating enough. But did I really give a shit? Anything beat being overweight! I’d been discriminated against so much when I was overweight. Now, people were leaving me alone, which seemed better…or was it?
My therapist started in on me…I liked her a lot, in fact, cuz she was open minded. Dr. P disliked my therapist’s open minded approach. I won’t tell you the name of my therapist…but Dr. Pearson would badmouth this therapist RIGHT IN FRONT OF ME…I often asked myself about what went on whenever they spoke. I’ll bet Dr. Pearson treated my therapist rotten. I can only imagine their conversation…Oh, I think the writer in me will speculate:
Dr. P: “I think we need to forced Julie into the hospital.”
N: “But Julie is suggesting an alternative and I think we need to listen to her suggestions. She has lived with this long enough and is a responsible adult. I see this because she’s amazingly prompt and is so courteous to everyone here at the clinic. She’s keeping up with her studies. I think what she is saying is important and we need to listen better.”Dr. P: “N, you are NOT a specialist. Therefore, you don’t know what you are talking about. We need to take over and get Julie on the scale, and NOT in her clothes. In a gown and force her not to drink ANY water all day! She needs more monitoring, more force…You are too lenient.”
N: “Okay, I am not a specialist in ED. Neither of us is a specialist in Julie. Know who is? Julie is. We need to honor her wishes.”
Dr. P: (swearing to herself, covers the phone) “I wish Julie had a different therapist. Someone controlling and manipulative will do great.” (uncovers phone) “Yes, N, well…when is Julie coming to see you next? Before graduation?”
N: “Er, let me see where she is on my calendar. Yes, our regular appointment is before she leaves for graduation.”
Dr. P: “Give her an ultimatum that will REALLY scare her! Tell her she can’t graduate! Oh, we need to take over her body! Run her life! She’s clearly incompetent!”
N: (after they’ve hung up) “Gee, what a bitch…..I feel oppressed in this situation. I feel cornered and in a tough situation. I cannot go against Dr. Pearson, but at the same time, I trust Julie and feel she’s certainly insightful and clever…Plus I’ve got the clinic administration to deal with. I wonder how much Julie senses of this. I try to hide my real feelings, and I wonder if this is the correct approach, or if I should just relax and be myself.”
Here I am at my graduation, with my advisor, Darrah Cloud. I was wicked proud that I had earned my MFA!
After Goddard, my life went downhill, sorry to say. I was coerced into “eating disorders care.” I’d never been in “eating disorders care” before because it didn’t exist back when I entered the mental health system. This was supposed to be the Great Cure but wow, was I ever sorely disappointed! Had they learned ANYTHING at all in 30 years? Apparently, I had lived with my own ED for 30 years and because of my own individual experience, I knew far more than these supposed “experts” I was meeting! You can usually tell by the dumb questions they ask! Oh, they have surveys and standard paperwork they have everyone fill out. I was so disillusioned…
N lost her job. It’s so horrifying what happened next. I figured no therapist could do me actual harm but that if I had a bad one, I’d put up with her and then find another ASAP. That’s not true, and I had to learn this lesson the hard way. I fell into the clutches of Maria Mellano.
From day one, she was manipulative and controlling. I truly believe that she had a deep psychological need to control young vulnerable people and run their lives. She jerked me around badly. I was so, so hurt after a while, but know what form that took on? Lemme tell you the truth about really bad abuse….
You actually worship the abuser because the abuser is so, so manipulative and can do no wrong that he/she justifies all her wrongdoing and you are always apologizing…for some fictitious thing she has claimed you have done. You beg this abuser for forgiveness.
You develop terror toward her.
You often think of killing yourself after you leave her office. Only to get the hell away. Sure, there’s the Red Line train station right there. Another body, another day. But you think real hard about the train operator. Somewhere, you heard that if a train operator is operating a train and a person jumps in front, that operator ends up with PTSD, and this can ruin his life. Did you really want to do that?
Oh, then, the accusations…..jeez. When you can’t do a darned thing right. And the threats and her use of “police force” if I was caught on a broken down bus and didn’t make it there on time. Sure, I’d call her to let her know, but what if her voicemail was full.
“Oh, Julie, it’s NEVER full.” Which was complete BS. Her word against mine, not much you can do. I was accused of lying over over when I wasn’t lying.
Then, it was 2011. Guess that’s when I really couldn’t take her abuse and BS any longer. My weight dropped to a very bad danger point. Because I still trusted her, I told her I was gonna die. I told her my pulse was too slow. So? I would show you the photo I have, but I’m not wearing enough clothes! Sorry! Well, I am…I think a jogging bra is enough, don’t you? It’s just that I feel kinda modest, know what I mean?
So…anyway….You guys know about the abuse at MGH. And the whole ordeal….Really, in all my years on psych units I had never before experienced such horrors as I did there. I had been on units over 50 times. This wasn’t just “not liking the care.” This was patient abuse like I had never known before.
Let me tell you something. Shitty medical care is everywhere. Sure, there are lousy dentists, lazy orthopedists who would rather give you pills than do an exam or give you a referral to PT. You CAN see someone else. You just walk out and go to a different one, and in so doing, you are sending a clear message to that doctor that he or she sucks. And we all know about rude secretaries. But abuse…well, there’s a difference!
I was completely stripped of everything that I had in me that was human at that place. No, I wasn’t psychotic and this stuff really happened. I couldn’t leave. I was trapped. I couldn’t call out or use the phone for one second in privacy. All calls were done with the nurse standing right there, listening on, and if she didn’t like what I was saying, she’d grab the phone from me and hang it up.
The meanest nurse in the place was named Sheridan. Or I should say the mean one I had. At one point, after Sheridan had decided she didn’t “like” my phone conversation where I was telling my friend I felt I was being poorly treated, she yanked me into a room and started yelling at me for what I’d said over the phone.
I told her this was a private conversation…She cut me off. I wanted to say that what went on between me and my friends was none of her business. I could say what I wanted to them, and I had the right to feel any way I wanted about what was being done to me. I had the right to tell my friends the truth about what was happening there.
Apparently, Sheridan felt that the TRUTH shouldn’t get leaked out. She shoved a paper and pen at me.
“It’s a three day. Sign it now.”
A three-day is a special paper. If you sign it, you have to appear before a judge. Judges are moody of course (ask any lawyer) and when your three days are up, the judge decides….You leave, or you are COMMITTED! For ten days, or up to SIX MONTHS!
Now, how illogical is that? But that’s the dumb law, as it stands. Why was I being forced to sign something?
I never signed it. Actually, what happened was their error most likely. Maybe the medical student blew it. Or someone just pulled some strings for me…either way, I doubt the medical student had any clue (or, shall I say, insight) into what was going on with me. They told me my “commitment” was up and I was free to go. Thank god! I was so thirsty! I left that place and thank god I could drink as much liquids as my body needed!
Guess what they were doing? Restricting my fluids to four cups a day. That’s roughly a liter. Now, I asked over and over what the MEDICAL reasons were for this, and they said, “This is protocol.” Apparently, this is the case, as every single other patient in their prison who has ED has reported this arbitrary water restriction.
If you ask anyone, they’ll tell you, “Well, it’s Mass General, the great Mass General must surely know what they are doing.”
I told them over and over I had taken lithium in the past and for whatever reason, I required more water than other people.
This was confirmed a year later. After about 25 years….I have had faulty kidneys since age 26 or 27 and no one was even paying attention. In fact, I am very good at drinking the right amount for MY BODY. Know how much I really need?
Here in South America, it’s winter right now. I have to purchase water because our tap water tastes really lousy…so I purchase a six liter bottle of water…daily. Yep. I drink six liters of water a day. Not six cups, six liters. That’s during winter. Summer…and if I am exercising…that will be up to double the current amount.
You can imagine how it was for me at MGH, begging for water like I was a beggar woman, and being told over and over how manipulative I was and what a liar I was. Oh, they insisted they had to watch my every move in the bathroom for fear that I would drink out of the shower or toilet. I didn’t shower cuz they were cruel to me! I wasn’t gonna take off my clothes in front of them!
I got out. So shaken. This was the first time I had ever had really bad PTSD FROM a psychiatric experience…yet I was already experiencing trauma from abuse from Maria Mellano and her constant threats and bullying. I had to go to so many appointments! This was hell!
Then, I got on Imipramine for binge eating. THIS IS WHERE MY NEXT BOOK BEGINS. Ten days later, guess what happened? I got the black box warning thing, that “agitation” you get. The thing that makes people SO CRAZY that they end up committing suicide within a short time. Yes, I did report it to Dr. Pearson, who claimed it was paranoia….nope. I told her about increased heart rate and pulse. She said to ignore it. The fast pulse and high blood pressure were witnessed at the ER that winter… I pointed out to the nurse that this fast pulse was a side effect of Imipramine and she said, “No, it’s anxiety.” You can’t argue when you are seen as a mental patient! She knew nothing of Imipramine and she was the one who asked ME how to spell it and what it was!
I have another photo, but again, I don’t have that much clothes on in the photo.
Oh, I got off Imipramine the following February 2012, but that “black box warning” thing continued and I was going through withdrawal…geez. I couldn’t get my pulse or blood pressure down. And my breasts were still enlarged from high prolactin. This came from Imipramine as well.
Here I am the next fall, 2012. This is after that whole suicide fiasco:
I seem happy, but I was just dressed up for church. A bunch of shit came down. Some lousy stuff happened late fall. I was really beginning to see through Dr. Pearson as the money-hungry drug pusher she is. Oh, sweet talking, but….
I tried to find another therapist. I went through two, then ended up with that David Alpert who was an abuser. As I’ve told you, he was a liar, a faker, and his asking me out on a date, his discussion of random acts of sexual abuse (that was just plain weird) his telling me about his ex-girlfriend, his constantly calling me “Honey,” was just plain flat out abuse. I walked out of my last session and told myself I had no clue what to do…knowing Dr. Pearson wouldn’t even believe me! She’d think I was delusional, so there was no point! I was starting to hate her.
So, I was starting to keep track of my weight, I mean really seriously. I was still trying to get so-called “treatment” but….It all seemed hopeless. I tried so hard to reach out, cry out and say, Please, will someone just LOVE ME? I wished that black box warning feeling would go away. I knew it was from the drug…but dang, it was there and there and there. I couldn’t get it out. Like I wanted to but I just had to wait it out.
I found some photos in my files tonight. This one was taken July 19, 2013. At this time, I went to THREE therapists at my so-called “health plan.” Geez…one yelled at me in her office, the second turned me down saying he knew nothing of eating disorders, and the third asked me where I lived and who I lived with, then said to “talk to my social worker, see you in a month.” I left then thought, “Wait, I don’t have a social worker! I told that therapist this, was she not listening!” Then I fell down right near the bus, so exhausted.
I have a couple more still photos of me around that time. In one, I’m only in bra and panties, so forget it. Here’s one taken August 6, 2013, less than a week before I went into full code from acute renal failure:
I think I am still alive. I have a few sad pictures of me over the past year…I am crying and stuff, really couldn’t stop after what was done to me in the hospital, the accusations, etc. I felt ruined by those doctors, by the shrink who insisted that I be force drugged, and by Dr. Pearson, who never even called me to…maybe at least apologize for not listening. Perhaps when I was raped was when she really began to turn her back on me. If she had some other agenda, some pressing issue I never knew about, well, fine, but I almost died a bunch of times from her denial and…I guess negligence.
If a patient of yours is being abused, you are supposed to do something to help that patient. It’s professionally required of every doctor to do so. It’s abusive to instead try to convince that patient it never happened and tell her she’s sick and wrong!
With everything stacked against me (I’ll spare you the gory details but there were a few) I am now FREE of psych abuse! I walked out!
Here I am in Miami:
That night, Puzzle and I flew to South America, and we are here now. Safe and free.
It’s been cold here the past few days (it’s winter here in August, Agosto) but sometimes I go to the beach, a few minutes walk away. Here is Puzzle running on the beach a few weeks ago:
I will be back soon! I ain’t dead yet! Me and Puzzle are right here!
Why I felt like I had the flu all the time
I don’t feel that way anymore, actually. It was in fact the substitute for my regular doctor at the hospital who told me that that flu-like feeling I had every day came from med withdrawal. It seems to be gone now.
I had heard that med withdrawal can make you feel that way. Actually, a smorgasbord of meds do that when you go off them. But I never put two and two together.
News about me
I have to pay the rent today. I know a lot of people don’t look forward to paying the rent because it means that they have to look at their checkbooks and balance them once more, or look online at their bank account, never a pleasant task of course, but for me, it’s different. The dread, for me, is walking into the office and being noticed by those office ladies. I know that in a month I’ve gained a significant amount of weight. Thankfully, it’s a cool day, so I can wear my bulky coat. I love the flap that covers my face. I keep thinking that I will leave there and they will say to each other, “She can’t control herself now,” or something else horrible. Maybe if I think about the budget instead, and try to forget about what others think, it’ll help.
I was motor-mouth for a couple of weeks and now suddenly I’m slow like molasses is in me. It’s a relief, to tell you the truth. I don’t feel the constant pressure I felt. I guess you could say I was agitated. I was agitated for a long time, looking back. I feel a lot calmer.
I’ll explain: When I got on Imipramine…actually, I was on Desipramine first, and then quickly switched to Imipramine, the bingeing stopped. This was around the beginning of November of last year. Of course, I was so happy about this that I figured I’d put up with the side effects. I felt as if my life was saved by this drug. I knew that all the literature said that if I felt the side effect “agitation,” I should report this to my doctor immediately. I remember walking home one day and telling myself that I definitely felt this. It was uncomfortable. It was annoying. But no way would I tell anyone that I was experiencing this, because maybe Dr. P would take me off my precious Imipramine that kept me from bingeing. So I learned to live with it, and then gradually forgot that this was my life.
The reason why they want you to report agitation is because this is the side effect that causes people to go over the edge and commit suicide, by the way. This is the “Black Box” thingy on antidepressants such as Prozac. These antidepressants have a stimulating effect and also a calming effect and it varies from person to person. Whatever it was about the Imipramine that stimulated me caused the agitation. It was a physical discomfort, kind of an antsiness, and also a mental discomfort, never satisfied, never at rest, always on edge.
It is also the stimulating effect of antidepressants such as Prozac, and notably Effexor, that causes me to binge, ironically. So I’ve gone for years without bingeing, and then they’ve slapped an antidepressant into the mix, and whamo, I’m bingeing and miserable. But these drugs are so complicated, much more complicated and unpredictable and dangerous than the prescribers and researchers truly fathom. Each of these antidepressants is different.
I’ve looked through my journal from last fall and studied it. The Imipramine definitely stopped the bingeing. The whole tone of my journal changed dramatically. A lot changed. Most of the stuff I’m not even going to mention at the moment.
I’ve been off of Imipramine, that is, zero milligrams, for three weeks now. I’d say that the drug’s side effects seem to be leaving me. I used to have a very bad dry mouth. No matter how often I brushed my teeth, I had a horrible taste and I knew my breath was bad. Speaking was also difficult because my lips would get glued to my teeth and I’d have to wiggle my mouth to unglue them, right in the middle of a sentence, and do all kinds of other mouth tricks to enable me to speak with a dry mouth. You can imagine what it was like to read aloud in front of an audience. It’s great having saliva back.
My breasts seem slightly less swollen. It was a gradual shift. I was very impatient to get rid of this breast milk. There is a difference in overall skin coloring and also in the shape and coloring of the aureoles. If they’d remained proportionately the same as they were, given all the weight I’ve gained, I’d have had to buy new bras by now. People who have been following my blog for a while can imagine the horror and misery I would have felt to have had to buy new bras. It is unthinkable. Just devastating. So I guess it’s a relief to me that I no longer look like I have implants. I know all this sounds very self-deprecating, but if you consider that I was treated like a pair of boobs and otherwise worthless when I was in my 20’s, and stared at for much of my life, and had this worthlessness drilled into my head by the man who raped me, you can see where I’m coming from.
It was sometime between Sunday and Monday that the agitation left me. I’ve been feeling very resigned and worn out. I have recordings of myself speaking that I’d made prior to that point, while I was feeling agitated. I did these recordings simply so that I wouldn’t “lose” writing ideas. I have over 30 of these recordings, but I notice that often in the longer recordings my speech accelerates into this feverish, often angry and riveted tone. I was annoyed that I was unable to control this. It kept on happening.
I was speaking with someone, I recall, last Thursday night, while she was driving me home, and I found myself going on and on about things I was excited about, my ideas about how I was going to change the world and what was wrong with the world in the first place. But I couldn’t stop myself from speaking. I felt like I was imposing on her. Of course, most people would have been driven nuts by my motor-mouth. She shut off the engine when we arrived at my building and let me go on for a while. I felt rather grateful for this, actually. I kept apologizing, saying that I so rarely had human contact or human conversation whatsoever, and sometimes it just burst out of me, everything that I thought, all my ideas, volumes and volumes of wonderful, crazy, revolutionary ideas.
This, of course, is how you lose friends. But there are a lot of people out there, exceptional people, who do not judge. They don’t close themselves off to folks who are a little different from themselves. I am trying to teach myself not to judge. It’s a belief I have. We as a society, in our language and way of life and hierarchies and social structure, are programmed to judge others and fear them when we don’t understand them. I am trying to undo this programming.
I didn’t feel judged that night. I felt like my friend was treating me with patience and understanding. I told myself I’d make it up to her somehow. I’d be the giving and loving person that I wanted to be.
I feel okay now. I went to see my minister today, and we spoke at length. I wasn’t motor-mouth. Just resigned to everything. Sad about my life.
These drugs are scary, scary, scary. I’ve experience hypomania before, and even peeked into actual mania maybe once a long time ago, but this wasn’t anything like that. It was agitation. A long time ago, while hospitalized, stuff would happen and I’d get violent, maybe shove a chair or something. In all cases, it was in response to something the staff did to provoke me, but at any rate, I’d say that what I felt when I did these things was agitation. A feeling in my body like I couldn’t stop.
And I suppose it all started on that day I was walking home and told myself I’d put up with the annoyance, this side effect from Imipramine, just live with it. I’ve been withdrawing from Imipramine for weeks and the agitation has gotten much, much worse. I read in many, many sources that stuff like this happens when people withdraw from a medication. This can lead to all sorts of myths, according to the literature, about these medications.
First of all, some are addictive and some aren’t. It is the antianxiety meds that are addictive, just like alcohol. Antidepressants area not addicting. But your body gets used to having the antidepressants in your system. I should provide the link to the .pdf document I found that explains all this better than I can. You can take an antianxiety pill, such as Klonopin, and maybe feel less anxious once it kicks in. You don’t just take one antidepressant pill and suddenly feel not depressed anymore. You take these pills and they build up in your system over a number of days, weeks even, before it starts to help, if it is in fact going to work at all. By then there has been this huge change to your chemistry. You don’t crave the antidepressant the way a person craves the antianxiety pill or alcohol or a cigarette. But because of the chemical alteration, there are going to be repercussions while trying to get off the antidepressant, especially if you try to get off too fast. You know something? Some people can never, never, never get off these drugs, even when they try, because getting off is such torture that it seems better to stay on. Effexor, for instance, is notoriously tough to get off. Google it and you’ll see message boards where folks have talked about the tortures they’ve been through.
So I’m off Imipramine. I went through the bad headaches a few weeks ago from getting off the drug too fast. I went through the agitation the entire time I was on it that I did my best to ignore. I was motor-mouth for a few weeks that was probably another withdrawal thingy. And you folks who have been reading my blog this whole time must have noticed I was one helluva bitch. Can’t promise I’ll stop being a bitch in my writing, but the person behind it is less fucked up on drugs.
You know what they do when they see a person who is agitated? That’s right. They give this person antipsychotics. So Dr. P saw me motor-mouth and hinted that I needed antipsychotic medication. This is how people end up on five, six, even seven psych meds. A lot of stuff I’ve been reading lately talks about people who start taking pills like Prozac, which induces a mania-like state. They are then diagnosed with bipolar disorder, and given mood stabilizers and antipsychotic medication to control their mania. Of course, they have to have a med to counteract the side-effects of the antipsychotics. And if any of these pills causes insomnia, they are given a sleeping pill. Blood pressure pills for high blood pressure, stomach pills for stomach acid. Then they’ve gained weight from all these meds, have to buy new clothes, maybe the doc hints that they should exercise and control themselves, and it all seems so useless and futile.
I’ve been that route. Shock treatments on top of it. Lots and lots and lots of unnecessary shock treatments. They work, then the effect goes away very, very quickly. Soon after, more shock. I got so confused, just out of my head from repeated shock, which was mistaken for further depression, and I was back on the table for more shock. I remember that I was lying on the table and they were about to stick the anesthesia into me, and suddenly they asked permission to do “bilateral” ECT, that is, to shock me on both sides of the head. No papers were signed, and there was no discussion of the pros and cons, potential for permanent damage, or why they were doing this. I lay there while they held the anesthesia needle and waited. As per usual, I had had no food or drink that morning so that the anesthesia wouldn’t sicken me.
I said, “Yeah, go ahead.”
The anesthesiologist said, as always, “Pick a nice dream,” and I was out.
I couldn’t keep track of much after that for a long, long time. I guess I should be thankful that today is May 1, 2012 and those days are over and I know to pay the rent and give Puzzle her monthly medication. Would you believe that was 1996? So sixteen years have passed since I had bilateral ECT at McLean Hospital, over and over and over.
I joined MindFreedom International yesterday. The URL is mindfreedom.org. Go take a look. Most of the emphasis is on forced drugging, use of restraints, and ECT when they talk about the abuses in the mental health system. I was looking for stories about abuse by therapists but it’s tough to prove that this happens. I also looked for stories about eating disorders treatment and the need for change and alternatives to the “team” approach and imprisonment and controlling, manipulating, coercion, blackmail, lying, withholding information, lack of informed consent, human rights abuse, etc. So I plan to start a mailing list and get some dialogue going, and contact the Massachusetts chapter of mindfreedom about what I went through at Mass General last summer with the sitters agency, and then at Blake Eleven (the psych unit). I’m not an isolated case. This was happening with all the patients there, the monitored phone calls, everything. Writing to the state chapter was suggested to me by the national people. Here is my chance.
I am going to work on the problems that have resulted from my tumultuous relationship with my last therapist. It seems like as soon as I started seeing her, everything went wrong. She was manipulative. She was very controlling. She had a temper, too. There’s a fine line between being a caring therapist and going over the top. She lost control sometimes. She’d accuse me of stuff, and threaten to have me put away. She used scare tactics. I was always scared to show up and scared not to. I was convinced that she was a great therapist because of her caring and dedication. But people who can’t control themselves should not be doing therapy. I’ve had bad therapists in the past. But she is the one I’m the most torn over. Or maybe that it’s just all so fresh in my mind. It’s only after I’ve left that I can look back and see it all for what it really was.
Misinterpretations and assumptions
Okay, I have had a very, very bad headache nonstop since 4am. And yes, I did check my blood pressure. I do this now and then out of curiosity. People who are skinny and don’t eat much run the risk of low blood pressure and pulse, and I have experienced both of these things. This is the reason I got the BP/P monitor in the first place, last summer.
History: I take, or, rather, took, an antidepressant that shot both my blood pressure up slightly and my pulse to the roof, or at least by comparison to where it was before. This was a side effect of the medication. I was not too pleased about this side effect, and it was one of the reasons I tapered off the medication. I am waiting for this side effect to go away.
This antidepressant is called Imipramine. It is actually the first antidepressant ever invented. It is no longer popular. Once Prozac and the other Prozac-like drugs came on the market, Imipramine and the other “tricyclics” got ignored. It so happens that most doctors and nurses don’t even know what Imipramine is, or what the side effects are. They don’t know how to prescribe them, either.
When I was at Walden, none of the staff were aware that Imipramine raises blood pressure and pulse. They saw that my blood pressure was typically 130 over 85, shrugged, attributed it to my age, and forgot about it. They assumed my pulse, usually 94, was due to anxiety. They did not go back and look at my previous records at the very same hospital, and see that my pulse was almost always under 60.
Everywhere I have gone, I have had to point out to yes, medical professionals, what Imipramine is, how to spell it, the fact that it is an antidepressant, and what the very, very common side effects are and yes I have read the drug insert and yes these are verified by the drug company.
“This couldn’t possibly be a medication side effect. Ninety is a perfectly safe pulse. Nothing is wrong with your blood pressure.”
The nurse practitioner on my case didn’t read my chart unless I asked her to, and even when I did ask, she usually didn’t bother to do so for a few days, making excuses that she hadn’t had time. It was blatantly obvious. It was especially amusing when I put in a loud complaint about this, in writing, in my chart. When she came to see me, it was clear that she had not read my complaint. Ha ha. When I asked her about “maximum doses” of medications and stuff, she had to check with her supervisor on how to reduce or raise them. Huh? This person prescribes? She never looked at my vital signs or results of blood tests that I know of.
But oh yes, she looked at what I weighed each morning. That was all that mattered.
And I am hysterical mental patient? I am the one considered incompetent? My T considered me so, so incompetent that she took the hospital’s word over mine.
She and my primary care doctor wanted to send me to the state hospital because they felt I was mentally incompetent.
Who, really, is incompetent?
I think I have made it perfectly clear that I am not incompetent. Yet the reality exists that I have been alone and a little concerned and extremely inconvenienced since 4am with an excruciating headache. It is debilitating and I could barely dress myself.
No, this does not mean “poor self-care,” and if I didn’t have this mental patient label no one would make this assumption.
Yes, I have a history of chronic dehydration due to my eating disorder. I have learned that I have a weird feeling in my body when I am severely dehydrated. Headache is part of this feeling, at least for me. I woke up feeling that way yesterday morning. I don’t take this lightly. I hydrate. I do not overhydrate. I care for myself.
So that could be part of what’s happening. Or this could be Imipramine withdrawal. Yes, I tapered appropriately, exactly the same way they tapered me while I was in the hospital.
It could be one of those freak things.
I am not hysterical mental patient. I don’t need group therapy for this, thank you. Nor do I need to make a long, long list of emergency coping skills, and on the bottom is, “Call my therapist or the Crisis Team” with their numbers written in just in case I am too emotionally unstable to remember them.
All the above are why I divorced the mental health system.
All of the above are why I am sitting here writing this right now.
All of the above are why I am dealing with this pretty much all by myself, which is a mixed bag, sadly.
I think I will try to get some sleep. I’m going to try to get to a class at church tonight.
Now that I have divorced mental health, at least I won’t get “Section Twelved” and carted off by police to the hospital against my will for having a headache.
Please don’t ask me to rate the quality of my day on a scale of one to ten
More often than not, I feel kinda embarrassed or even ashamed mentioning “progress” I’ve made with my mental health. This is not usually because I’m afraid to speak too soon. Sometimes, though, I’m afraid my “progress” will be stolen from me. What I mean is that it will be denied or made trivial. I’ll mention an example of progress robbery and you’ll see exactly what I mean in a flash. In brief: I was 26 and wicked discouraged an no way did I expect help right at that moment. No one listened, no one cared, and no one that was treating me knew anything about eating disorders or cared that I had one, so I’d long since stopped talking about it, and given up. I had no faith in the doctor. He decided to give me Lithium. I took it. Right away, my eating disorder improved. Nothing I had tried even compared to how much this pill helped me. I said to the doctor, “This Lithium has helped me very much. It feels like a miracle.” He said, “This is not true. Lithium doesn’t work that fast. You couldn’t possibly be better. What eating disorder?”
So theft is one reason I hesitate to reveal progress. I have had progress denied and stolen from me many times. Folks don’t see the change in me even though I feel it deep inside me and know it’s there, or they claim it’s not possible. Well, it’s my body. What I feel is what I feel. You don’t feel what I feel. What in fact isn’t possible, Doctor, is for one person to feel another person’s feelings.
The other reason I hesitate to mention progress is due to embarrassment. This goes way, way back, probably deep back to early childhood. Oh, I could probably go on and on about progress with toilet training and go into making poops and getting praised up and down for my so-called progress with body function, maybe write an entire essay on that alone. But I won’t.
I think I will indeed focus on my parents, though, but at a much later time in my life. I’m talking about a time when they were overly involved in my mental health care. I would say that it went so overboard that they were privy to unlimited information about my case from my psychiatrist and therapist. At any time, they could call these people and discuss my general welfare in detail with these people. Not only that, but these people shared stuff with my parents that they never shared with me, stuff about future plans for my care, for instance. My parents could ask any question they wanted and they’d get an answer. In this sense, my treaters and parents together considered me a child who didn’t have any capability or responsibility when it came to my own care, or need or desire for knowledge.
So you get the picture. Little Julie with a room full of big adults. The playing field. The doctor asks, “Julie, can you tell us how you are feeling?” My parents on the edge of their seats, ready with their pom-poms and confetti. I wait a minute. I take a breath. I say, “I think I’m feeling…I’m feeling…I think I feel good today.” My parents jump for joy. My mom waves her arms and cheers. “Yay Julie! Rah rah Julie!” And then the parade starts. Posters are erected for Julie. “Look at Julie! We’re so proud of you! Rah rah! Let’s all go out and get some slurpies and stuffed animals! Everyone, come and see big Julie, all better! She is the star of the show!”
So you can imagine.
Okay, so say my response is that I feel bad today. Here’s what they say in response. Their faces fall. They droop. They say, “Aww. You lost. Let ‘s kiss your boo-boos and make them all better.” Certainly no raised arms. No parade. And to the doctor, “What’s wrong? Give her more pills!”
So this was my cheerleading team, for years. Yes, they rubbed it in. They rubbed their own noses in it, saw it so up close that they saw nothing else, and nothing else mattered. They were short-sighted. They were unwise, and they were fools. I was unwise as well to let all this continue for as long as it did. What I wanted to tell them was, “Hey, ‘This too shall pass.'” I saw as well as any of them there that not only did life have its ups and downs, but that life was more complicated than just having a bad day or a good day.
Finally, I pulled the confidentiality card, and stopped allowing my parents to participate in any way in my care. For many years, I continued to argue fruitlessly that to rate my “mood” on a scale of one to ten, as doctors and other mental health practitioners often insist, is trivializing “mood” to the extreme. The same goes for rating how my day went. How can I put a number to something that is qualitative and not quantitative? How can I put a number to something that has many, many dimensions? This is like rah rah. This is trivializing. This is like reducing to “good” or “bad.” This is saying whether I won or not when I didn’t win or lose this day. I breathed this day. I might have felt like a winner or felt like a loser, but that’s only one of the many, many thoughts and feelings that I have had when all is said and done.
So I hesitate to mention any progress. But right here right now on April 10, 2012, I do feel progress is happening. I am fifty-four years old and I have spoken about some of this progress and repeated some of it over and over and over. Some of it I haven’t mentioned out of embarrassment, fearing rah rah, fearing that someone (real or imagined) will pounce on it and steal it.
When I was in the hospital, I used to write stuff down, and I’d have these meetings with the doctors and bring my writings with me. Nine times out of ten…well, no…just about always, no matter how much or how little I’d written, they’d sit there and say, “Say it in your own words,” or they’d say, “How about summarizing.”
I have a couple of things to say.
These are my words, first of all.
Secondly, this thing that I have written is a summary. That’s why I wrote it in the first place.
But before I even had a chance to say that much, most of them had already sized me up. They hadn’t even read my chart. But they’d flipped open a page, written their orders, and said they had no more time for me. Case closed.
Now and then, I’d walk into these meetings with something written in list form. A tiny piece of paper gets a more positive response, and I’m more likely to get more of their time, maybe even more of their attention. Sometimes, I wrote progress lists.
Here is my progress list for April 10, 2012:
I am forging my own path in regards to my care.
I have rejected “traditional care.”
I have rejected inpatient eating disorders treatment.
I have rejected tried and rejected the one “eating disorders” partial program that I tried.
No residential care takes “public assistance” insurance (Medicare, Medicaid) and I have rejected these forms of treatment.
I choose to stop therapy.
I have chosen to taper off as many psychotropic poisons as I can. I started this process and have done well.
I chose to stop DMH services.
I chose to end “weekly weight checks” and cease weight-centered eating disorders treatment.
I chose not to follow a traditional “meal plan.”
Without hesitation or doubt, I know that the above decisions were and continue to be the right path and my true destination.
Where am I headed? I am forging my own path now.
No one tells me what to do.
This means I make mistakes.
When you are doing “traditional care” with a “team approach,” mistakes get made, too.
The difference now is that I am the one making the mistakes.
I and I alone am responsible for the mistakes I make.
I own them.
I forgive myself, pick myself up, and move on.
Sometimes, it takes a bit to get going again.
Here are some very concrete examples. I will try not to get too embarrassed over this.
I have experimented some with my medications.
And if you are bored with this gibberish, skip this paragraph
And go on to the next one, okay?
Lowered my Trileptal. That didn’t work out too well, so I put it back up again.
But I seem okay on half the Lamictal I was taking. Better, in fact.
Naturally, it’s all experimentation.
Of course I do shitloads and shitloads of reading and re-reading of
drug inserts and interactions and titrations and stuff I read all over the place about side effects
and potentiation (which means when one drug makes another drug more effective than it normally is)
and weird things that happen when you get off a drug
that the drug companies hid from the public.
What’s most important is what happens to me
How I react. How I benefit or don’t benefit or react badly to a drug.
Lamictal kept me awake at night and gave me double vision.
I used to take 600 a day. It says clearly on the insert that is included with the original bottle
That for “bipolar,” doses above 200 produce no further effect
While in certain research, higher doses are claimed to have effect…hmm….
I have lowered my dose from 600 to 100. I feel much better, can sleep finally,
And finally, finally, when I look at Puzzle, I am less puzzled,
Because I see my one dog, and not two.
I can’t afford twice the vet bills.
I am off my antidepressant because it stopped antidepressing
And stopped stopping my bingeing.
I’m hoping that my vital signs will normalize.
I’m hoping that my breasts will return to normal size
And in so doing, maybe I’ll get some relief from body dysmorphia
Which I think is caused by increased breast size from galactorrhea
(this time I think I have it spelled right)
Which is increased milk production, a side effect of the antidepressant.
And I am also successfully reducing my Topamax.
It, too, has pooped out.
As used to prevent bingeing, it doesn’t work for years and years, typically, I’ve read.
For whatever reason, Trileptal seems to help me
So I’ll stay on it.
Enough about meds.
And here’s a bit about food:
I played around with what types of food I ate
What types of food I purchased
What types of food I could afford
I made decisions based on food price
I made decisions based on nutritional value
I made decisions based on how long I could store a food
Where I stored that food
How I stored that food
What quantities I would have to purchase
Whether it contained sugar
What form of sugar
I asked myself how much sugar I wanted to consume
I asked myself about how different foods made me feel
Both physically and emotionally
Whether a food made me feel satisfied
Whether a food tasted good
I thought about flavor
What went with what
I thought about what foods felt scary to me
For any reason.
I knew that I didn’t have to justify to any other person
Why these foods felt scary.
I noticed that when something was labeled “natural”
This word, “natural” was pretty much meaningless.
I want to buy food that I can bring home on the bus
Or carry on my back in a knapsack.
I asked whether a food contained a whole ton of salt
I asked myself about processed foods
I decided that diet soda was a waste of food stamps
Which really I already knew
I no longer buy coffee at coffee shops, ever
My own is better
I noticed that processed foods were more expensive
I noticed that foods that were made already
Were much more expensive
Than if I bought the ingredients and put them together myself
I considered the risk of ending up bingeing on that food
I made decisions based on what would make me fat
How many calories were in it
Yes, I admit this.
I found myself suddenly very, very broke
And go to food pantries now
I have learned a lot about food pantries
It takes practice.
I want to write about the unique experience
What it’s like to have an eating disorder
And experience a food pantry.
I have learned what to choose in canned food.
And what not to choose.
Yes, I still binge.
This has changed drastically.
I no longer spend…how much of a bill was I running up?
It is unthinkable.
We’re talking cash. Well, no more.
I don’t do sugar binges anymore. This is amazing.
Don’t ask me how I made this change. I do have a credit card and I very well could use it,
But I don’t.
I don’t run out and buy cake or ice cream or candy or peanut butter
I don’t eat a stick of butter by itself
No donuts or pastries or muffins or bakery stuff
No pretzels or chips
No cheese or cookies
Nothing delivered or from a restaurant of any kind
Why is this?
It is embarrassing and awkward buying this stuff.
I can’t afford it.
It’s damn embarrassing using my food stamps to pay for it.
It makes me feel very, very sick afterward.
Pasta (not that “ramen” shit, which tastes like pure oil to me).
Canned soup on sale.
Canned veggies on sale.
Any quick-cooking, very inexpensive grain, whatever’s on sale.
Canned pumpkin (I get a lot of coupons for it).
Fresh veggies (not expensive ones).
I have almost broken my tendency to dig into Puzzle’s food.
I am just about dog-food free.
When you add it all up
And consider everything
I have spent time eating nothing at all for days.
I have spent time bingeing for several days in a row.
These two things are the same as before.
But what I binge on has changed,
So financially, I’m not dropping hundreds of dollars a month
And the other thing that has changed
And here I’m a little embarrassed to admit this
Is that I have spent a few days
Actually eating meals.
This is brand new.
No, not real big meals.
It’s kinda scary.
No, not freaking “meal plan”
An approach I did indeed try, over and over
And it never worked for me.
I am forging my own way.
I am experimenting.
Seeing for myself and my own body
What works and what doesn’t work.
I will continue what works and stop doing what doesn’t work.
“Meal plan” didn’t work.
I would rather do something that not only works
But is inexpensive, healthy, practical, and logical.
I see progress.
I see learning from mistakes.
I enjoy learning.
I am not embarrassed about learning.
I am proud to share the fact that I have learned new things with others.
I am proud to say that I have found things that have worked.
I am cautious about suggesting to anyone else to do what I am doing.
I encourage others, though, to look around, to keep an open mind
And to realize
Although my path may be a little bumpy
You can trip on any path, even one that is well-trodden.
I carry a flashlight.
I bring my dog with me.
I pick up after her.
I pick up
I have a couple more things to say, and then I’ll shut up.
These are my words, first of all.
Secondly, this thing that I have written is bit longer than a summary.
There is a place for summaries, and there are places where I can go on and on in as much detail as I want.
This is my blog, a place where I write whatever I want. A place where no one tells me “time’s up,” and shoos me out of the office.
If you didn’t want to read this, you wouldn’t have gotten this far down.
And now that you’ve gotten here, it’s my turn to say, “Time’s up.”
You can get out of this blog entry now, and walk through the door.
My door is never, never locked.
I want to buy food that I can carry home on the bus
Or on my back in a knapsack.
Work in Progress
There is this thing inside me
It will not shut up
It is in my head
I picture it as a lever
I picture it tipping
A click into place
A flow of noise
Something bubbling downstream
And the word, “Destroy.”
Destroy. Destroy what?
Not myself. Destroy
Is not referring to the actual food
I shove into my mouth and mindlessly devour.
It is referring to the lever itself.
It will not shut up
This click into place
I will destroy the flow
I will stop its heartbeat
Pull out all eight legs if I have to
Beat it and beat it
It may still be alive even if it has
A gash in its body
Beat it some more.
Until the lever shuts up.
Beat it some more
I was way too full
Five bites ago
Take three more bites
Oh my god
Tell it to stop
In another two seconds
I’m going to pass out again.
I wrote this…just now…jotted it down just so that I will have something to bring into therapy tomorrow in response to my T’s statement, “You do not want to give up your ED.” It is true that I do not want to give up thinness. But I have been living in sheer terror of this thing called binge for fucking 32 years. It is hell on earth and I think this poem states this clearly. I went into therapy and begged and begged for help to get rid of binge 32 years ago. This is why I started up with the Imipramine immediately last Tuesday night as soon as I saw that there was a problem. For her to state that I do not want to give up bingeing? Huh? She is so full of bullshit. I was livid when she said that. This was most of our screaming argument in a nutshell.
I think I said that the Imipramine had started working…well, I was a bit mistaken…it was kinda soon, anyway. It’s been a while now and I have not binged, so keeping my fingers crossed. We’ll see. My body is so full of food crap. It is bad, bad, bad. One day…I have really lost track of all the days now, they are all a big blur and there were so many days, all these days that I just lay in bed and lay in bed…well, one day, I lay down and slept, then I would become aware that I was not sleeping but just lying there, and my stomach would get very painful, not a sharp pain but kind of this wicked uncomfortable feeling. It was stretched to the limit and very hard and huge all day long. It didn’t shrink at all over the course of the day. I’d sit up on the side of the bed and wait maybe thirty seconds, and let out this massive ugly-tasting belch. Then I’d feel a little better. I’d stand up and go get water to drink, go pee. Every time I went to pee, I’d poop, too, gigantic amounts of poop. After doing that, I’d feel better, too. Then back to sleep and the same thing, over and over. This was probably a two-hour cycle throughout the day, sometimes only a half hour, though. Quite often, I’d burp up actual food material, partially-digested bits of food, that is. I swallowed it back down, not really knowing what else to do. That was my day. I was in a complete daze, a lot of bad pain and a headache, very, very sleepy, too, like I was drugged.
I still have a huge stomach and it feels full of food, but by all means it is not stretched to the limit anymore. My intestines, too, feel overloaded with crap. It will take ages for my body to recover. I saw my face in the mirror and it is unrecognizable. Just disgusting.
I plan to cancel the appointment with my primary care doctor on Wednesday. I do not want to be humiliated. She can see me some other time. If my T doesn’t like this and doesn’t respect how I feel, she can just go to hell.
I re-started the Imipramine last night…this morning my T called me to see if I am coming on Monday
I explained in my previous post that I was debating re-starting the Imipramine. It is a no-brainer that I do need this medication, unfortunately…sadly. My life depends on this medication. No, I will not be “blue” without this medication. I will fucking die without this medication. “Blue” will not kill me. Many people find ways to deal with “blue” other than dangerous medications. Binge eating, given my specific medical circumstances, will kill me. I have tried everything and only this dangerous pill works to stop it.
I am keeping my fingers crossed that it starts working soon. Last time it stopped the bingeing in three days.
So my T calls this morning. I canceled today’s appointment Tuesday night. Why? I didn’t want to show up bloated…I guess that was the number one answer, and there were a bunch more reasons, too. I didn’t want her put-downs, either. She asked me, when she called this morning, why I had canceled…bit by bit this led to a huge fight.
I told her, for one thing that I had gotten back on the Imipramine. She said, “Come in to therapy and let’s work on the bingeing.”
I said, “Oh, such bullshit.”
Of course, she was kind of up in arms over this, countering with how sick I am with my eating disorder, how I don’t want to let go of it…how I need therapy…
I told her to let go of her ego. I do not need this therapy bullshit and I do not need to be under the power of the mental health system and given a label and told that I am sick and weak and this is why I have this behavior and need to show up at her office and be therapized.
She is no different from the others. She is an excellent T but not magic. There is no magic T.
I feel sorry for people who say their therapists know them better than they know themselves. I suggest to these people that they get out pencil and paper and do some serious writing, and fire their ego-inflated therapists. You might also, in the meanwhile, reflect on what went on in that therapy relationship, because when it gets like that, you end up needing to heal from that therapist, to break away, to grow up, to grow up, to grow up. You do not need a surrogate parent. Therapists like that are harmful. They come in many forms. They will try to convince you otherwise. They will tell you you are weak. Get out while you can.
My T, thankfully, is not one of the above. I had one of those once or twice and learned my lesson. I have a good T. But a T is a T and no therapy has helped me with bingeing. Walden Behavioral Care did not help me with bingeing. I told my T this in our conversation as well. I told her they insisted on treating me for purging. I do not need treatment for purging as I do not have this problem. I told her about being dehydrated. I told her about being denied water.
I told her…actually the very first thing I said was that I felt profoundly misunderstood. I really should have stopped there.
We ended up getting into a huge fight over the phone. I lost it completely.
I can’t even be pleasant and charming right now.
Some comments on binge eating, starvation, inpatient treatment and my life before and after…this is kind of heavy
While I was in eating disorders treatment, nothing was discussed about bingeing. Nada. Zilch.
We’re talking about state-of-the-art treatment. They do state on their website that they treat binge eating disorder, but they don’t address this behavior in the groups or talk about how to stop this behavior. No one talks about bingeing. Ever. The focus is on purging behavior. The staff go to great lengths to prevent patients from purging in the bathrooms after meals and snacks. Patients are watched during meals and I assume that hoarding behavior is generally prevented, because patients are not allowed to wear garments with pockets in the dining room. To accumulate enough food for a binge, at least a binge that is big enough to qualify as the kind of binge that I would do…it would be impossible. There are no drawers and no space to hide items.
I finally inquired about bingeing after I’d been at the Alcott Unit of Walden Behavioral Care, the inpatient unit where I was staying, for over a week and nobody had even mentioned what the heck I was going to do about bingeing once I got out.
Of course, I have talked to you guys a zillion times on this subject and I had told the doctor why I was on, specifically, Topamax and Imipramine. Actually, I have barely had the opportunity to discuss the whole Imipramine ordeal with you over the past couple of weeks…it was beyond the point of toss-up…let me back up and explain….
I have been on Imipramine since November. It is a fabulous drug for binge eating. This is the original drug used to treat binge eating, believe it or not. This research was done by some shrinks in the early 1980’s and was written up and published in a book calledNew Hope for Binge Eaters. I own this book. It is a very, very important book and I am angered, actually angered on a very deeply personal level that the research was dismissed by so many people…maybe because it put therapists out of business or made binge eating using treatment using Imipramine, as some called, in protest, “male doing to a female behavior” which is very bullshit because of course binge eating is not a female behavior and research on “chemicals” that influence brain activity is not done by only males…(this research and knowledge is something that is passed on not only in the pharmaceutical industry but in traditional “folk” cultures and within family units since the beginning of the species and is written in the earliest recorded history). I latched onto this book and after all these years still buy into the notion that binge eating is a brain response. I know this in my gut of guts.
I say this with tears in my eyes, not tears of sadness or joy or anything judgmental on myself certainly, but feelings of observation only. I also say to you, beg of you not to take this away from me or judge me or conclude that this is a bad thing or a sad thing or tragic. There is nothing tragic about it and I am not dying any more than anyone else is dying. I am getting older. Each minute, I am a minute older. So while I am typing this, each letter passes by. So let me establish that before I say the following about my eating disorder and let me say again do not take this special knowledge and experience and love and ownership in my body and soul of my eating disorder or judge me as immoral for saying this:
I have unique knowledge of my eating disorder that no one else has. I know it better than anyone else. I am the only one who has lived with my eating disorder for 32 years. No one else has lived with it. I have lived with it in secret for just about all of this time.
My eating disorder is not a living entity, does not have a gender, and does not and never has spoken to me and I have never given it a name, such as “Ed” or “Ana,” nor does it have a “voice.” Because of its non-entity as living, I have never been married to it or in any kind of personal or social or sexual or abusive partnership or codependent relationship. I don’t talk to it either lovingly or defiantly, ever, or refer to it as “you.”
As a matter of fact…let me say further that those books out there that tell you to think of your eating disorder as some kind of person called “Ed” are completely lost on me. These books sorely disappoint me. It is so…cliche to call it Ed. I mean, how fucking over-used. Even my therapist disappointed me and called it Ed. I told her that in calling it Ed, in giving it a name, a name normally given to humans, I am giving it way, way too much power.
At the same time, in giving it this name, I am acknowledging that this so-called Ed is actuallynotme, that this Ed isseparatefrom me. However, let me state right here that according to the laws of logic, in which I was trained way, way back in high school math class and I think junior high as well, and yes, I was on the brainy side and loved logic and still love logic in all its forms on all levels and yes I do believe in God I feel God in my heart and know that there is a God and to me this makes all the logical sense in this Universe that I live in as I type these words that pass by, letter by letter….according to the laws of logic, just because I do not call my eating disorder “Ed” and just because I insist on not thinking of “Ed” as a person, because doing so would empower my eating disorder..does not necessarily mean that I am integrated with my eating disorder to the point of it being me and my living as it and doing eating disorder behaviors automatically, not by choice. I don’t know the logic symbols for this equation but trust me I am right. This implies a certain largeness of the eating disorder within me to the point of robotic takeover. I did not state this at all.
There have been times that I have felt taken over by my eating disorder on an emotional or spiritual level. There have been times that I’ve felt that my eating disorder behaviors have taken over so much of my time that I have time for nothing else. There have been times that my eating disorder has rendered me unable to do daily tasks or take care of myself on a very basic level. There have been times when I have struggled to stay alive and have nearly died because of my eating disorder.
There have been times that I have only lived due to sheer luck. Some people may say that that God kept me alive. Some people may say that there was a reason for this. I don’t think there has to be a reason why I am alive. I am alive. Did God play a part in it? Does God “play parts”? Did God want me alive? Does God “want” things? I don’t really think God has a “plan” for me. I can pray and pray and pray to have this “plan” revealed to me. But in so doing, what would I expect? A list? Do this, do that? Adam’s wife Sarah wanted a child. God told her to expect one. She was old and well beyond childbearing age. She laughed at God’s plan for her. She bore a child, Isaak, which means “laughter.” I absolutely love this story and I don’t know why I love it so much.
“Plans,” are up to me at this point. Before I was in the hospital, I knew that I would die. I did not merely plan for death. I knew that I would die without question, so I had no future plans for myself. I knew that this would happen very, very soon…within days…it didn’t happen and didn’t happen. I made it to Sunday…then would go back into the dark of the weekdays and disappear, only to re-emerge on Sunday at church…on time every Sunday.
This was my life and this was how I lived it. I am alive now. I have the memory of having lived the way I did for those months. I have the memory of the sensation of my soul walking away from my body, then returning, on a handful of occasions, possibly three times. Yes, three times, I think. These went unrecorded. I did not physically die. My heart did not stop and I did not stop breathing to my knowledge. To my knowledge. I was not asleep or even close to it and I am absolutely positive that this was happening. In my heart I have no belief in an afterlife or no feeling on a gut level that there is an existence for me after death in any way or consciousness or continuance of “soul” as entity.
I had read about this happening to people who were near death. I read it with fascination, mostly because I have this curiosity about death. Many people are curious about death. As for “body leaving soul briefly,” had I ever thought it would apply to myself, I would have thought it might be a bit of a bullshit notion. But I truly believed that in my soul, the life-ness in me, had died, or was slowly, slowly dying, and might as well be dead, and that my body…it was this useless, dry, pale, flaccid thing.
“God’s plans”? Somebody might tell me to pray for God’s plans. I don’t think it’s anyone”s business what I pray for. What I pray “for,” that is, what is uttered in prayer is between God and me and is not up to another person, though sharing a prayer is awesome…that is not the same thing as religious persecution.
I am strong. I am 54 years old and suddenly, suddenly I am so assertive and I have a voice and never in my life have I ever had such power. I am able to speak for myself. I am able to think my own thoughts and think for myself. No one controls my thoughts. I am a writer. Through my writing, I have a voice and I tell my story through written and spoken word. I have a story to tell and my story is worth telling. My story should be told and needs to be told and will not go untold and I will not be forgotten and my story will not be forgotten. I am a person with an eating disorder experience and that experience will be told in words and so that experience will be shared with the world so that others may know what this illness is and is not. I will give other people with eating disorders a voice. I will give people with eating disorders rights and an end to discrimination on all levels and an end to invisibility and an end to ignorance and fear and misconception.
As soon as I entered the hospital, I began to eat. I was surprised that I did this. Or shall I say I was beyond the feeling of surprise and not surprise by anything I said or did, at that point. I consumed a bite of this thing now and then. Please do not judge me. I was not “restricting.” I was not “counting calories.” I was way, way beyond that point. I was extremely weak and at survival level. I was mentally disoriented. All I could do were bites. I focused on what was in front of me. I concentrated very, very hard. I needed to be in the hospital. I say this without question. In the very physical and practical sense, I was completely unable to do this without being in this setting. A person who doesn’t have an eating disorder can argue, “You can do this because you are physically able to put fork to mouth,” but they do not know the actual condition that I was in at this time.
Not only that. I was not “losing my relationship.” I was not “losing my wife and kids.” I was not at risk for “losing my job” or my “reputation.” My problem was not a “feeling of ‘out of control of my life'” and my parents were not kicking me out of the house and therefore I was not knocking on the doors of the hospital out of having no place else to go.
I had no relationship to lose. I had no wife and kids. I had no “job.” I had no reputation at risk. I did not live with my parents and had no family to speak of…my family (mother, two brothers) didn’t and doesn’t give a shit about me anymore, and there was no life left in me to feel out of control of. I called the hospital and asked to be admitted because I had stopped eating altogether and was about to drop dead. I was and am 54 years old.
Somehow, a starving 54-year-old woman got on a bus with barely any luggage, stumbled into a cab, over-tipped the driver, and made her way to the third floor of the Admissions office of Walden Behavioral Care on February 8, 2012, and lived.
I wonder if the cab driver bought a Diet Mountain Dew with the extra money. I wonder if the cab driver double-checked the label to make sure that there are actually zero calories in Diet Mountain Dew. You never know. Sometimes, those labels are weirdly printed, and a zero can look like an eight. When you are 54, you sometimes have to take off your glasses to see how many calories are in things because the print is so small. This can get embarrassing out in public because it looks obvious that you are reading the calorie count on labels. It is a dead giveaway and when I do this in public I worry about strangers suspecting that I have an eating disorder…or thinking “funny” about me or scrutinizing what I buy…like judging me because I don’t buy, for instance, frozen French fries. I can’t believe how many people waste money on frozen French fries. Wow I am having fun with this. On the other hand, maybe the cab driver saved up the extra tip money and put it in a jar, and it went toward paying the bill for his family’s health insurance. Cab drivers have to pay for their own health insurance. I feel sorry for those guys.
So I’m going to swing way, way back in subject matter here. I was talking about Imipramine and bingeing and how well I know and own my eating disorder. I went on to say something that highly relates, and this is that I own the experience of my eating disorder. I own all 32 years. I own the right to tell the story. I own the duty to myself to tell the story. I feel that I am doing others a huge favor by having This Hunger Is Secret: My Journeys Through Mental Illness and Wellness published in paperback at last. I feel that I am doing other people with eating disorders a huge favor to tell the story of my eating disorder. I feel the need not to tell a “recovery story.” I feel the need to tell an “experience story.” I feel that telling an “I lived happily ever after with wellness” is doing the world a terrible injustice. I did not show up at Walden to recover. Duh. I showed up to live. If you have gleaned anything from this article by now, you know this already. You don’t come out of there recovered. You leave and you’re only at the beginning.
I’m going to be straight with those of you with eating disorders right now. At Walden, they did not want me to be straight with people about this. Well, bullshit. Look up the statistics online. You deserve to know the facts. Statistics vary because each organization collects data a little differently, but they will all tell you a few basics that are the same: Anorexia nervosa is the most fatal of all mental illnesses. A majority of people with anorexia do not, I repeat, do not make full recovery. By this I mean definitely fewer than 50% fully recover and no longer struggle with these issues that people with anorexia nervosa or other eating disorders struggle with. The earlier you start, the lower your chances are of full recovery. The longer you have the disorder, the lower your chances of full recovery are. Relapse is very, very common. I believe the “recovery period,” or shall I say average “rehabilitation period” is nine years. Yes, nine years.
The following statistics I did not read in all sources but did read in several sources regarding adolescents and I’m not certain that I am wording this properly so I’m going to be very cautious about how I say it. Eating disorders and adolescent suicide are highly linked. Bulimia is found…I think in 50% of female adolescent suicide attempts. The figures on males are probably difficult to ascertain and I imagine the data is poorly researched and poorly gathered and inaccurate due to gross ignorance regarding eating disorders in men and boys…but I’ll bet it’s also 50% as well. In adolescent suicide attempts the figure likewise for anorexia and binge eating disorder is 30% equally. The figures were not all the same exactly…don’t quote me…but let me say that all the figures were extreme and they were all shocking and they were all very, very clear.
What these figures do tell me now…now…now…is that these kids…these beautiful, unique kids that I met in the hospital need to speak and live and act and think and be their own person and have rights and have a voice and be listened to. Many of them were stifled by their parents and by their friends and by their schools. Many of them were force-fed by society and told by society how to live, act, and think. Most did not have their own voice. Most had lost that voice along the way. Many spoke in a whisper. Many spoke literally inaudibly. Some spoke in a mumble, not due to malnutrition but out of habit. Many of them had taught themselves to be givers and had given themselves to others and not allowed themselves to be loving to themselves.
But I am getting off track of what these figures do tell me. They tell me that people with eating disorders need to have a voice.
People with eating disorders need to have a voice. When I went into the hospital and realized very shortly afterward that I had a future, this weird thing called future, I vowed that helping people with eating disorders have a voice was something that would be in my future.
I am not saying that I am committed to do this. I am not saying that I plan to do this. I am saying that this will happen. Maybe I should add something to this because nobody can predict the future. Nobody. You can’t and I can’t. This will happen if I live to see it happen. And yet I am doing it right now as I type these words, letter by letter.
And so, I have my new book in the works. I am working on it and I am writing it. I have more plans and these I will get into soon enough.
Again, I have drifted away from Imipramine…I got on it in November…as I said, I know my eating disorder and after 32 years, I know in my heart that this “binge” behavior is brain-based.
If ever I am “taken over” by my eating disorder it is during this behavior. I do not plan this behavior. It is pure reflex. It only happens at certain times and is not a response to hunger. It is not a “coping skill.” It doesn’t seem to be an “addiction.” Sticking to a “meal plan” does not work and never has. It has nothing to do with “crisis” behavior. I don’t do it to “numb emotion.” I do not do it as “self-harm” behavior although the English word “destroy” runs through my head while performing this act. No therapy has helped.
Ignorant people, both ignorant professionals and ignorant lay people, have said, “Don’t do it. You probably are weak-willed and need to go on a diet. Just binge on fruit. Don’t take the first bite. Why don’t you just binge ‘a little’ and not ‘a lot’? I wish I had anorexia…I need to lose weight. You are doing it to control your parents and need years of family therapy and day treatment. You obviously don’t have an eating disorder, but are doing this as a way of manipulating your therapist and are trying to get controlled substances from the psychiatrist. You must be lying because I don’t see any weight gain.” I still do hear quite frequently the line, “I wish I were anorexic.” Don’t jump to conclusions on this one. People say this for many reasons. Many people say this because they want to lose weight and say it for very stupid superficial reasons out of ignorance and think it’s fun to be this way and that it’s a disease of vanity and fashion. But many people who say this already have serious eating disorders and wish to “trade” their eating disorder for anorexia and change their weight. I am not one to judge.
So in November I got on Imipramine. Dr. P didn’t tell me the side effects but I read up. Not good. Not good at all. The Imipramine stopped my bingeing so this was good. But immediately my breasts got huge. No eating disorder thinking here they were huge and only two days ago…I have been completely off the drug for a week now and they are diminishing…finally I am noticing a positive change, some size reduction…finally. It was ridiculous and I was so miserable over it, not to mention hormonal danger. I wasn’t worried about breast cancer, just whatever hormones were possibly messed up, this plus whatever overproduction of breast milk was happening.
This plus ridiculous vital signs. Borderline very high blood pressure, diastolic near and sometimes above 90 ALL the time when normally it is either 80 or 70 or so…completely normal…pulse always running 90, generally above 90…this is ridiculous. Risk of heart attack on Imipramine no question…the insert stated that this is doubled. I am not kidding you…risk of heart attack is doubled. This and 1/3 chance of permanent, I repeat, permanent movement disorder. I did not want to stay on this dangerous medication. Just couldn’t. This plus perpetual dry, dry mouth and perpetual thirst. The headaches started when I got on Imipramine and no doubt it was contributing to increased need for water. I am off Imipramine, by choice. I asked for my Topamax, the other med I’m on to control bingeing, to be increased. Unfortunately, I’m at the maximum dose. I’m on Lamictal. Lamictal increases Topamax availability by 15%. I’m on 350 Topamax and the max is 400 so essentially I’m close to that dose considering I’m on Lamictal. Topamax alone might not help without the Lamictal and this I can’t explain fully it has to do with a long history I have…regarding the effectiveness of Lithium for bingeing…etc etc. I ended up figuring out that taking Lamictal at night is by process of elimination and careful examination of my records THE cause of insomina that I am experiencing, so I am moving it to morning. Technically, I need to divide it up into a split dose and I have no clue why this wasn’t done in the hospital. I hadn’t split it up myself before the hospital because I was taking meds by habit and only did them in such a way that I would most likely not forget them.
They didn’t discuss bingeing in Alcott. Nada. Why? I asked. About five minutes of private discussion with the nutritionist and that was all I got. Nothing in groups. This was all I got. All the help I got. No suggestions. Nothing. I guess treatment for binge eating…where is this treatment? Does it exist?
I don’t really know what to do right now. I asked for help and didn’t get it. I am off Imipramine. I binged. It was automatic. I did everything the nutritionist suggested to “help” the Topamax do its thing by using food to help my meds work well. This did not help.
I binged yesterday afternoon. I am bloated still. My ankles and calves are huge from it. My wrists are enlarged and my hands also have edema in them though they are not bubbling or anything scary like that. My stomach is enlarged quite a bit still and will remain so for a long time. Never mind my face…I touched it once for less than a second…that was enough. I am so embarrassed by this that I cancelled therapy. Or shall I say that this is one of the reasons. I don’t want my therapist to know that I binged. She will say, “Told you so.” She will say that I should not have left the hospital, that she was right and that I was wrong and that I am the sick one, etc. I refuse to show up for an appointment with my primary care doctor like this even if it means waiting for a week for the resulting edema and stomach enlargement to go away.
No. I typed something and then deleted it because I thought you would think, “How tragic it is that Julie has not”…I say this with disgust in my heart…”How tragic it is that Julie has not recovered.” Well, fuck you. If I have to fast for a week…yes, I did type, “a week” and I will not apologize for having typed this, I will do so to rid myself of the horrible edema and swelling that has resulted from this binge. I refuse to show up at my primary care physician’s office looking like this and I refuse to show up for therapy looking like this. I am not going to show up if I have to cancel appointments for the next month and a half. And no, I am not planning to fast for a week, simply because I don’t think it’s going to take a week.
No one, no one no one no one no one at Walden told me what to do if I binge. Not one person. So yesterday I was in the kitchen and it came over me. I boiled up maybe six or seven cups of dry dog food and gulped it down. Then I went out and bought food. While I made this trip I was in a complete trance and gobbled up food while I was traveling on foot. I kept the food in my pocket secretly. Well, you have read in my blog many times about these binges and you know how I have lived and lived and lived with this misery.
Not one person told me what to do after a binge. I feared stomach rupture. What is the thing to do? What is the safest thing to do? Should I lie down? On my stomach or on my back? Is it really safe to allow myself to sleep? I generally pass out…I honestly don’t know how much is known about the combination of long-term severe starvation, underweight, and severe, chronic, difficult-to-treat bingeing combined with complete inability to vomit and suppression of gag reflex. How many cases of this do they really run across?
When I was in my thirties, they told me this bullshit, “Go right back to your meal plan.” I immediately canned this idea. They deemed me uncooperative. Obviously, they completely lacked understanding of my disorder and thought that what I was doing was overeating. I was not overeating. I was bingeing. You can’t eat three gallons of ice cream and two large pizzas and finish them at 4pm and then at 5pm get out your freaking fork and knife and eat three proteins, one starch, eight ounces of milk, etc etc etc…it is fucking stupid and illogical and they expected me to do this?
What I need to do after I binge I need to teach myself. Walden provided no answers whatsoever. They did not tell me how to handle it emotionally or on an eating level. I do know that if I resume eating way too soon, I will automatically trigger another binge. It is a brain thing and it can’t be helped. So I know to stay clear of food, any food, for a certain amount of time. Actually, this is not so much an amount of time but an amount of fullness. I have to wait until my stomach is emptied a certain amount so I have to wait before resuming eating. Try to explain this to a therapist. Well, fuck you. I know my body and I know my brain after 32 years of dealing with this. I have learned to save myself from yet another Hell.
But…I do need nourishment. I have to evaluate this situation. I have some serious thinking to do. I am not going to show up at my primary care doctor’s like this no way, even if it means canceling for a month. Even if it means canceling for six fucking months. I refuse to show up at therapy like this. I refuse to be weighed like this.
I refuse to be weighed at a weight that is elevated due to bingeing. I will tell you exactly why. The time I went to see my primary care doctor…this I explained to you out loud but I will tell you again. I had just binged the night before. She weighed me. She said, “I want you to stay at this weight.” I was at the time ten pounds heavier than usual due to the binge. Well, fuck you. I fasted and within an extremely short period, like about 24 to 36 hours or maybe 48 hours, I lost all the weight. I told her in the office, “What you are weighing is the food in my stomach, the crap in my intestines, and water weight.” She said, “I can’t believe you have ten pounds of that.” I said, “After 32 years, I know my body.”
After 32 years, I know my body.
I know my body more than you do. I know my body better than any doctor or hospital. I know my mind and my eating disorder better than my therapist does. I have lived with this disorder, this unique disorder that I don’t think these treatment centers see very often, and no one else has lived with my disorder in my body for these 32 years so no one knows is and knows what it feels like to be me better than I do.
It is not your place to judge me or make conclusions based on my eating behaviors as to the extent of my so-called “recovery.” It is not your place to pass moral judgment on me. I made a stern statement while in the hospital that how and how much people were eating in the dining room said nothing about how hard they were trying or what their attitude was or why they were there. This hit hard but I had to say it. Please, dear readers, do like they did in the dining room. Keep your eyes on your own tray and I will keep my eyes on mine. I will write in here about my life, though, and give you a window, a peephole, into it. I hope you enjoy my peepholes. I enjoy pecking them out.