I finished Lesson One at last. Of course, all the writing part was done ages ago, and the filming I did all at once in one evening, but the editing took so darned long. But tonight, or, rather should I say last night (I was up all night doing this, I must admit) I finally finished Lesson One.
Oh boy oh boy, I did not want to wait you guys. I was dying to get this up on Vimeo. But as you know or may not know, uploading takes ages.
Yes, a watched pot does boil, and I watched the darned pot from beginning to end. I enjoyed watching it boil, and yeah, seeing that 100% on Vimeo is great. But then Vimeo had the nerve to tell me I had to wait some 45 minutes for the darned thing to queue and then “convert.” Huh?
Well, I suppose I should not act like a spoiled child. You can’t always get what you want right away. However, it was something like 4am, or maybe later, maybe 5am by then. And then, you know, I guess you could say the night had rolled over for me.
So before you know it, the video had “converted” and all was fine and dandy in all-nighter land. I was determined to do everything just right. So I figured out how to do html and get the Vimeo embedded into my site, www.eatingdisordersrescue.com. And yeah, it’s there all right. Lesson One is right here.
I love you folks. I worked so hard to get this right. Take care.
I’ve had Lesson One planned out for a bit now, since last weekend, but I have research to do on it and a few old journals to look up. I have to pick through my memory for everything I can find on the subject I want to discuss. I am so thankful that the shock treatments I had in 1995, 1996, and 2000 did not wipe these memories out. I have so few actual written documents that go into a lot of detail, and I’m sure there were no diagrams or handouts.
I am so, so excited about this subject you guys, you would not believe it.
I really love being a memoirist. People ask me, “Why not drop the past and move on?” What is my answer to this?
I use memory to heal. And now, I am using memory, digging up what I remember and using it to teach. Because what I learned back then was very, very valuable, relevant, and meaningful for everyone. I think folks with ED can especially benefit from this information. Why? I have taught it myself and seen it in action.
And so, I will tell the story. I am good at storytelling.
Get ready, folks, for a good laugh….
My ex-therapist thinks I’m in the hospital right now. But she’s wrong…I’m not at the hospital. I’m totally off the hook with her and I don’t give a hoot.
I had phoned the hospital not this past weekend, but the weekend before, asking about care, specifically a week ago, that is, Monday the 11th, because the Admissions personnel weren’t exactly in last weekend due to the storm. I guess they decided the local Crisis Team should get in on the act. I’ve told my blog readers all this before, but in case you’re just tuning in, I’ll recap.
I told those Admissions folks no way did I want the Crisis Team showing up with the bells and whistles of police, ambulances, sirens, uniforms, and the like, so they’d better call first.
Now at this point I guess they called, and we agreed there would be no “home visit” if I agreed to make arrangements for Puzzle’s care, and show up at the hospital the following day. They said, “Call us tonight, and if you don’t remember by 8pm, we’ll call you.”
Did they remember? Nope. I phoned them maybe at around 8:30 or so, saying I was busy making a You-Tube. I said I was using Windows Movie Maker, and explained that this was free movie editing software that came with every Windows computer. I said I was making the You-Tube on request from a mental health website (not sure I mentioned the name of the website, but it’s healthyplace dot com’s Stand Up for Mental Health campaign) and I said the You-Tube was about empowerment and stigma and the advantages and disadvantages of “coming out” as a person with mental illness.
This information, all about “movie editing,” “software,” “You-Tube,” and the like rather overwhelmed this crisis worker. Keep in mind that most of their clients are not computer savvy, don’t have online access, and may not even know how to “keyboard,” as they put it, and often don’t have interest in it and don’t understand the value of it. So this crisis worker probably thought I was as together as can be.
You-Tube? Yeah, Julie’s fine. So everyone promptly forgot about me. Which was just what I wanted. And to tell you the truth, what I needed.
So I think my CBFS worker thinks I’m in the hospital. My ex-therapist thinks I’m in the hospital. How nice to have “disappeared.”
My psychiatrist phoned me, I think Wednesday night, saying, “Let me get this straight. You decided NOT to go into Walden?”
I can’t recall what I said, but I told her I had an appointment with a new T on Saturday, and that I would go to that appointment, and that was that. Apparently, my psychiatrist, Dr. P, didn’t phone anyone to inform them of my “decision.” Good.
Meanwhile, I signed up for a 5k not long before all this came about. This race is at the end of April. I told myself, “Yeah, Julie, fat chance this’ll pan out.” But I seem to be following through. I went to the gym Thursday and yesterday and ran quite a bit. I surprised myself at how well I was able to run. I felt strong and steady and happy and natural and felt no strain or soreness whatsoever. Yesterday I completed three and a half miles of combined running and walking, mostly running, and whatever walking I was doing was very, very fast, or at least fast for someone my height. Is it a myth that someone with short little legs is probably going to walk slower than someone with longer legs?
There is no reason I should have a crappy life. Why should I accept this lot? Why am I taking these “low expectations” everyone seems to be heaping on me? Why not reach for the stars? I am not scum, and I refuse to be spat on any longer. Move out of the way, you fuckers. This race is on, and I’ve got your number.
It’s “making” right now. I did not “edit” the footage, only added a few captions and cut off the last second or two, which shows me shutting off the camera.
Funny, the whole time it was in the works, all I kept telling myself was “Gee, that wrinkle in my shirt sure looks yucky,” or, “Why do I look so darned much like my mother?”
At least I still sound like a little kid. Well, sorta.
Let’s just say I got inspired.
I was told yesterday how immoral I was for complaining. That other mental patients, “people like you,” the person said, do not have homes.
Like “my kind” deserves the minimum. Huh? Since when?
It’s not the money part that bugs me, it’s the attitude. We are all supposed to live these marginal lives. We are categorized, diagnosed, placed in “programs.” We wait in dingy, crowded waiting rooms.
No, no no no no. I say this: Come, let’s climb to greatness. Each and every one of us.
Hi folks, it’s been a while since I’ve posted. I’ve been really busy. Anyway, I’m shooting off an e-mail today and I’m making it public. I didn’t put the name of the person I’m sending it to in the title of my post to avoid the Big Google machine.
I’d like to know from those of you who have been to Alcott (Walden Behavioral Care, Waltham, MA) recently:
Are they allowing you telephone privacy? Do they let you have privacy on the phone if you ask for it? Do they point out to you that you have this right under law in all cases and that everyone has this right no matter what the situation is? Or is it only in “special cases”?
You are allowed a confidential call no matter whom you are calling. It doesn’t have to be your therapist or your lawyer or a “special situation” and you do not have to be a certain age. It can be your friend or your sister or your voicemail.
The only way they can say “no” is via a doctor’s order, and legally they should not be monitoring phone calls unless there is a doctor’s written order saying so.
I’d like to know if the Alcott Unit is following the law, and I have no way of knowing unless you folks let me know.
Anyway, here’s the e-mail:
It has been a month since you phoned me and said paperwork regarding the telephone rights at Alcott was being assembled and sent to me. However, I have received no paperwork from you or from the hospital.
For the entire time I have had this case open and running, paperwork has been lost, forgotten about, misplaced, not sent, and disregarded. At first, I was surprised that this kept happening, but after a while, I told myself that “stigma” is part of life. As a mental patient, I am on the bottom of the totem pole, and I have to fight to be heard. This has been the pattern of my life since I became a mental patient over 30 years ago.
Are these Five Fundamental Rights meant to protect us and allow us respect and decency? Or are they merely there on paper, lip service only, meant to keep us happy and shut us up? There are gross human rights violations on every psych unit in the Commonwealth of Massachusetts. I have seen these things happening and I am not an army of one. I have a masters degree in creative writing and have written articles and books about these violations, past and present.
Are the people in our state government who are supposed to be protecting the rights of mental patients really doing their jobs?
I am going to find out.
So, I haven’t sent off the e-mail yet. Wish me luck.
Some background info, for those of you just popping in:
The Alcott Unit is an eating disorders unit. It’s like a psych unit only specialized and has very, very restrictive rules. The population is different. Younger and just about all female. Yeah, I know, the ED population isn’t all female but that’s who ends up there. These are scared kids and they want to phone home, but guess what? The phones aren’t private, they are in the hallway where everyone can listen in on your calls, including staff. Of course, it’s deliberate. They want to keep you under their watchful eyes and ears.
However, the law states that we mental patients are allowed confidential phone calls. Hall phones without any enclosures are not lawful. I petitioned for enclosures again and again and was turned down.
There is no medical reason to deny telephone privacy, none whatsoever. The staff want control over the patients and they don’t want the patients yammering to their parents, friends, and spouses about how bad the care is there. They don’t want information about mistreatment and neglect leaking out. That’s the real reason. That’s the reason on many units.
Any patient who poses a threat to the unit (like me) the unit will not treat, will mistreat, or will discharge. That’s life, I guess. That’s reality. I do what I have to do to survive, and they are a business, doing what they have to do to survive.
Back in Feb 2012 the only reason I ate at all (and survived) was because I promised if I ever got over this goddamn eating disorder, I’d make the world a better place for the starving kids of this world. Never mind whether I’m over my ED or not. I just don’t have time to wait for the Prophet Elijah. Fuck, I’m doing it. I’m doing it. I’m doing it.
My human rights complaint against Walden Behavioral Care, update, telephone rights, you’re just not going to believe this one (or maybe you will)
Yeah, they did it again! I appealed the decision from back in August (or I guess it was July) and sent in something in August. The DMH never received this paperwork, so I resent it via e-mail September 4th, as I told you. I immediately received an e-mail from Lizbeth Kinkead saying she would follow up. On October 9th, I figured I’d heard nothing, so I phoned Lizbeth, and she said the hospital had sent me something, didn’t I receive it? I said, no, I had not. So she resent it. I opened this only to discover that it contained old paperwork, nothing new. No response to any of the new paperwork I had sent, that is, no response to what I sent, originally, back in August that got lost, that I resent in September and have now waited over a month for a response. They in fact did nothing. I believe this correspondence has been ignored. Well, duh, that’s exactly what happened.
Shall I throw my hands up in the air and say, “That’s the breaks!” Nope. I don’t give up so easily.
See. when I was there, I promised those kids that if I ever got better, I’d get them their rights. This is one promise I’m not going to break, folks. I’m going to do this for the kids.
You know, I keep getting this junk mail from an organization called change dot org. I finally opened their junk mail and I think it’s time to start a petition if I don’t get some action out of the DMH real soon.
I have written to M-Power and apparently either their e-mail address is dead or they are too busy to bother with me. Maybe I should make a phone call to them. Or are eating disorders “minor illnesses” to them and are they too busy fighting shock and forced injections? Get real, folks. Ban the tube.
So I had my first public speaking class last night. Hey, folks, I’m going to change the world someday, just you wait and see. That’s what I told the class. It is already happening.
Yes, folks, I’m still working on it and this is still on the table. I phoned the DMH yesterday and guess what? They never received the paperwork I sent on August 16th, 2012 appealing the decision of the director of nursing that I reported to you way back when….oh, I’m sure you all got very, very tired of hearing me talk about it.
But then again, maybe you didn’t.
Cuz am I all that crazy? Just because we are mental patients, does this mean we should relinquish all human rights once we go into “treatment”? Is this what “treatment” means?
So here’s the deal: Massachusetts grants us lowly mental patients telephone privacy on inpatient units. On the Alcott Unit, which is an eating disorders specialty unit at Walden Behavioral Care, in Waltham, Massachusetts, the phones are out in the hallway where anyone can hear conversations, and clearly this is not following the law. I questioned this back in February and was immediately granted access to a private room with a phone, but sometimes was denied access to the phone by nurses who were ignorant of the law. Most nurses hemmed and hawed over it and said that patients had to ask specially for this room. At one point, they told me I was crazy and that the room didn’t exist, that I was hallucinating the room and needed medication, that I was delusional that these laws existed, and so on and so forth.
Trust me, these nurses were not psychotic, just extremely ignorant and didn’t give a hoot about the patients. They were dead scared of me. Cuz I saw right through them. I may have been psychotic, but I did know the law. I may have been psychotic, but that doesn’t take away my intelligence and my quick wit and my demand for fair treatment under law.
Just because we are sick, do we “deserve” to be punished, isolated from families, cut off from the world, our only contact with the outside world these two phones that are in the middle of the hallway where all the other patients, staff, doctors, visitors, and miscellaneous passersby can hear? Would it really be that much trouble to build little soundproofing walls to provide privacy for folks talking on these phones?
And yet the director of nursing refuses to budge on this issue. Someone claimed that DMH walked in there and said these phones were legal and I think DMH was never in there. I think this was a flat-out lie. Someone said DMH said the walls around the phones would be a hallway obstruction. I think this, too, was a lie because I think DMH had not even looked into it yet at the time that statement was made.
See, there was something I observed while I was there. Every time I got into a meaningful conversation with another patient, it got cut off. The staff overheard, and broke up the conversation. So we’d be talking, and suddenly, staff would walk in and say to the other patient, “The nurse wants you for meds,” or, “Group time!” or, “Come fill out the snack list,” or some such thing. If we were talking in the hall, the staff asked us to move. The staff verified that there was an intercom in the “Group Room” where they could listen on to conversations that took place at the table. They denied listening in on conversations, but during one of the times I spent there, they told us flat out they were going to monitor our conversations because we were gossiping. This was when I was there in March 2010. Then some staff claimed that this was illegal. But I said, right in their presence, that just because something is illegal doesn’t mean it doesn’t happen.
I notice that often, staff at hospitals will say, “That’s illegal” as a way of dodging a topic. So if you ask, “Do you give meds and lie about the reason you are giving them” and the staff say, “That’s illegal,” they are dodging the issue. They are not answering “yes” or “no.” I can only conclude that the answer is “yes,” they do not even want to answer this question because they flat out break the law. Do you see what I’m saying?
So yesterday I phoned DMH and the person with whom I spoke was very interested in my claim. She said I should immediately e-mail her the original letter I sent. So I did. Right away she sent a confirmation. It was quite clear to me that all this was new to her.
I believe that the director of nursing at Walden has been lying all along to the human rights people at the hospital and to me. I think they want to maintain tight control over the patients.
Now, let’s dig deeper on this issue. Why do they want to maintain such tight control? Why wouldn’t they want patients talking to their families?
Because they don’t want families to see the reality of the place. Reality is that some rather shady stuff goes on over there. Reality is that Walden wants to look real good to insurance so they will get their money. So they want to make sure they put plenty of weight on the patients. Weight looks good on paper. It’s the only measurable means of showing the insurance companies that they are doing well by the patients.
But you and I know this is bullshit. Not only that, it’s dangerous. Put weight on a patient too fast, or feed too much too soon, and you end up with refeeding syndrome. Look it up. It’s fatal. And yes, I saw a case of refeeding syndrome that was TREATMENT INDUCED at Walden. I saw one helluva lot of treatment-induced shit happening over there, including a a case where a person’s eating disorder itself had been treatment-induced.
And I’m going to use a lovely nasty politically incorrect term just to prove my point….I saw a case where a woman became “wheelchair-bound” due to treatment. She was forced to go on bedrest and because they did not allow her to move her body, she lost her ability to stand up on her legs and walk. She lost muscle tone.
People, this is not only happening at Walden Behavioral Care, this happens at “treatment” centers all over America and all over the world and this has to stop.
We are going to take back our rights. It will begin with this one simple step of getting the patients telephone rights. If I can do this with this one letter that I e-mailed over to the DMH yesterday, and that one conversation alerting the DMH to what is going on, then I will change the world for the better.
Signed, Julie and Puzzle, the most powerful thing to happen to eating disorders on six legs.
Puzzle is helping me get out more. She is bringing me more confidence. I take her with me everywhere now. As you know, or perhaps you don’t, Puzzle has already been doing several tasks for me. For years, she has been reminding me to take my meds. It got tough when I started to defy her. She can be very insistent. Now, I am back to taking meds. Reminding me to take my pills was her first service dog task. There were others.
“Grounding” is another task she does. Or at least that’s what a therapist would call it. Apparently it is the touch factor that helps with grounding. Personally, I think the word “grounding” is too clinical. Many dogs do this for their owners naturally.
Puzzle also helps me with digestion. It’s uncanny how she knows when to do this. I lie down on the couch and she puts her head right next to my tummy. I don’t know how it works, but the power of touch seems to speed peristalsis.
Puzzle is a huge help with shyness, body dysmorphia, and paranoia. She melts away my anger. She gives me confidence. She gives me a sense of purpose. She is a companion to me. I come out of my shell. I become me. Things that didn’t make sense before now make sense.
So I guess last May I did have part of the puzzle solved the day I decided to cook for her. The important piece was realizing that Puzzle needed to be in my life more. I didn’t say anything right away. I know that eventually I wrote a piece on my big “Red Dye #2” revelation in the beginning of May and why I switched her over to homemade food. It was an act of love.
Now, I bring her everywhere. I have joined a place called _____, where ex-patients gather. I came here knowing that I needed to do something, to be with people, but not a “mental health day program.” I hit it off with the director, Nanci, right away. She agrees with me about so many things! The director knows the laws about service dogs and emotional support animals as well. She also knows dogs and dog training. She sees potential in Puzzle. I guess she sees potential in me, too. Believe it or not (many probably don’t) I used to have a knack at dog training. I have very much forgotten those skills, but I intend to regain them. I think Puzzle respects me. She comes when she is called. She does what she is told and the only reason she doesn’t do what she is told is because she is confused about the instructions. She is eager to please. I think most dogs are.
I am going to try to get in to see Dr. P within a week or two. I need a letter to make it official. Meanwhile, here is a photo of Puzzle in her new role. We are in transition.
Puzzle has been coming to church with me. She will be coming today. If she falls asleep during the sermon, will anyone be insulted?
More news…I might be going to North Carolina in November, for the month, that is Puzzle and I might be doing a bit of traveling, working in exchange for room and board. This will be out in the wilderness. I will be doing this for National Novel Writing Month. More later.
I can’t believe it. I was just over at weather dot com and found out that Cymbalta was approved for lower back pain management. What next? They must be getting really desperate to sell their poisons.
If you want are considering taking a powerful antidepressant to manage chronic lower or upper or anywhere anything, read all about what I went through with the last antidepressant I was on.
When I was overweight my back hurt ALL the time. It really sucked. I was overweight because of the psych meds I took.
Oh, by the way, I have taken Cymbalta for depression. It was one of those that did absolutely nothing. Once, Dr. P gave me a wicked high dose of it and had me on it for a few days to “get me over the hump.” It worked. But she said it wasn’t a safe dose to stay on for long.
Wow, I really wish I never started taking these pills. I am so happy to be getting off of them. Three more days of Topamax, which I have tapered, and then I am off of it and only taking two remaining psych meds, Trileptal and Lamictal.
I feel decent today, by the way.
The only reason I ever wanted to be on pills was to stop binge eating. I actually begged to be put on meds for this in the 1980’s when the research was coming out. The doctors hadn’t read this research (I have the book still, called New Hope for Binge Eaters or something like that) and refused to give me meds, saying this research didn’t exist. The therapist I had asked me which drug I had read about. I told her. She asked me, “How do you spell Imipramine?” 1982 I think. I do believe that getting on Lithium was certainly a lifesaver for me because it stopped binge eating in for me in 1984, and there were no other treatments for this condition available to me. I was young and didn’t know much about the world. I was isolated and lived in a rural area and the doctors knew nothing. Lithium worked for years until they insisted on adding other drugs and mucking me up.
I am convinced that the non-drug alternatives to these psych meds are the way to go, at least for me and for many people. Doctors are very quick to push pills. I think if they are going to be used at all, it should be short term. The problem is that once you get on them, the doctors, and you, are convinced you “need” them and should stay on them for a long, long time, maybe for the rest of your shortened life.
If anyone asks me, I will most likely keep my mouth shut, though. If someone takes a psych med and it’s helping them, then it’s not my place to burst their bubble and yap about how nasty these pills are. They help, but they do other things that really suck, especially after you’ve been taking them for years. If I am asked, I’ll say something, but really, what you put into your mouth is your business.
Like I said in the hospital, keep your eyes on your own tray, and I’ll keep my eyes on mine.