Great film about the drug industry by Gary Null, please watch

The pattern of ECT aftermath

I have been convening with other ECT survivors on this and I notice a pattern.

1. Shock
2. Shock some more
3. Panic behind closed doors. “Uh oh! We goofed and damaged the brain! What now? We gotta avoid a lawsuit! What if it ends up permanent?”
4. Shock more so the patient won’t be able to figure it out.
5. Lie to the family and anyone else concerned.
6. Re-diagnose the patient to justify the actions. “She always was….”
7. If the patient complains, lie. “That’s not ECT damage! Not possible! That’s a symptom of your mental condition.” Fish for any sign of said condition. Corner or bully the patient into admitting to having the new phony diagnosis. Even “treat” her for it to convince her.
8. Hope she forgets and bullshit her family. Anything to avoid a lawsuit.
9. If the patient gets worse, to the point of being an embarrassment to the institution, put her away in a State institution. This is to ensure silence.
10. If the patient gets better, congratulate her on her accomplishments and breathe a sigh of relief.
11. If the patient, years later, puts two and two together, claim she’s delusional and psychotic. Or, as a last resort, lie and say “We have no record of that patient.” It might work.

If I were president of Uruguay

Many people ask me what I think of life here now that I have been here a year and a half. I thought as part of my answer to this question, I’d ask what I would do if I were running the country.

First of all, I’d suck at being president of anything. Keep that in mind! I’m much better at the creative arts and teaching-type roles. Even when I was s kid, people knew this. Making music was my corner of the world, and I was very good at it. I voted. I disliked reading the newspaper and had to struggle to find it interesting, to tell you the truth. Music theory fascinated me and I could soak that up for hours on end. Given this….

If I were pres, beyond sucking at it, I’d at least try to do the following, not in any particular order of importance:

1. Road safety. They’re doing a great job of improving the roads, but can’t keep up! The country is growing rapidly. It’s so hard to predict how things will go so I can see why there’s so much work yet to be done.
2. Sanitation. Again, due to rapid expansion like I’ve never seen myself in the States, sanitation is an ongoing challenge. We employ street cleaners in some areas who do an awesome job. I’ve never seen cleaner streets, since it’s all done by hand almost daily. But there are basic challenges, such as what to do with waste water and how to distribute clean water to households. I suspect Uruguay does a better job than most countries in Latinoamerica. The mold problem is terrible here as well. Ask anyone in the States and they’ve never heard of mold. I am awfully glad we don’t have major chemical spraying and poisonous insecticide use the way they do in the States. Folks manage the mosquitoes and tiny biting insects okay, and I’ve learned, too. But at first it was overwhelming to me. I worry that with so many mosquitoes, an outbreak of disease could spread rapidly, especially in Montevideo and along the coast.
3. Domestic violence – Here, the family unit is much stronger than in the USA. I am so impressed by the way families stick together and support each other throughout life. Folks from Uruguay who spend time in the USA are rather turned off by the way USA families often abandon ship, or put away their elders. I hear nursing homes are practically unheard of here, yet people live out long healthy lives well into elder years. The overall attitude of “take care of others” is so amazing to me. I believe the flip side of this is that here, we have visibly more domestic violence. I am sure that many families never have a problem with it, or for some, it’s a one-time thing or lasts only during times of extreme stress. I’m wondering also if in the USA, there’s just as much as here, only it isn’t as overt. Maybe in USA it’s medicated away by “mother’s little helper.” To me, that’s not solving the problem at all. Anywhere on the planet, the problem needs to be faced head-on, by stopping it, by changing abusers, by working with them to stop, and educating people so that it doesn’t start in the first place. It saddens me that in USA, what’s happening is that they are treating the aftermath and allowing the abusers to continue.
4. Change the face of tourism – Tourism is the main source of money coming into Uruguay. Tourists make businesses happy! I think though that we need to attract a different type of tourist. We need to appeal to more people who are interested in this country for some reason besides a drinking and partying place. To me, this might mean emphasizing museums, music, and culture more, and also, offering many opportunities for lovers of outdoors and wildlife. I can only imagine the fishing here must be awesome.  We cannot offer mountain-climbing since we don’t have mountains. Looking back, I’m sure, if asked, my parents wouldn’t have wanted to tour a country where they couldn’t climb mountains. But this is one of the most beautiful places I’ve ever seen! It’s just plain gorgeous! I see many tourist buses starting November and December. But when I see the tourists drinking and trashing the streets, I cringe and run away! It’s almost like they come here and have no appreciation, not even realizing someone is going to have to clean up their messes. We need to appeal less to these folks, and more to folks that act respectfully.
5. Public libraries – I can’t tell you how wonderful public libraries are to those who don’t know. The Internet here is great, it’s true, we have the best internet in the world right up there with Japan and USA. However, it doesn’t substitute for a public library. Libraries provide space for kids and folks of all ages.  I couldn’t tell you how many adults in USA look back and say, “The public library was my favorite place to go after school and it saved me from getting into trouble.” It looks like we have a terrific school system here, and kids seem to love school, which is refreshing to see after my experience in USA where education is clearly going downhill and not as good quality as what I had as a girl. It seems like we have strong universities, too. There are university libraries but I hear they are overcrowded and only in Montevideo. We need public libraries all over, big ones and tiny branch libraries, too, which are less impersonal and enjoy regular clientele. In fact, we need places to go study that are completely silent, that is, no sound, no music, no motorcycle noise, no blaring loudspeakers, nada. I believe those who have plenty of money probably can easily find quiet in their lives, but from I can see, those who cannot afford quiet, private homes can never ever escape the noise. I can’t imagine the stress they are under, completely unaware of how too much noise negatively affects one’s health. I realize that my library idea is an extremely expensive proposal.  But maybe some effort should be made. There is nothing like tiptoeing through the fascinating shelves of books, where it’s so quiet you hear pages turning and dust falling, and they tell you to whisper so you won’t disturb anyone.

That’s my take on it, and if I were elected president, besides being rather inept at it, I’d propose those things. Who wants a pres who is only 155 centimeters tall and speaks rather awkward Spanish? I don’t look nor act like pres of anything. If I’m elected, though, I’d avoid my administrative meetings, which I’d suck at running, make excuses and instead spend all my time holed up in my QUIET office writing all day and cuddling with Puzzle. You’d never really know that she was the one running the show, and I’d be the figurehead that everyone wished they had not elected.

Bipolar: What it means to me

I was first diagnosed bipolar by Dr. John Merrifield of Lexington, Massashusetts when I was in my late 20’s. I believe this was move was made solely to please my parents, who had been dismayed by the schiz diagnosis made by Dr. Charles Capers of Pittsfield, Massachusetts.

Before schiz, Capers, then working for Gould Farm, had me diagnosed with depression. However, when I went there for my interview I told them I had an eating disorder. They told me they didn’t treat ED but said they’d accept me anyway and treat “depression.” They didn’t treat anything at all, actually. I thought the place was going to be great before I got there, but after my arrival I quickly became dismayed. It didn’t take long before my ED was totally forgotten and I suffered in secrecy and silence, with no one there I could relate to.  One day, the nurse, Nancy Smith, came up to me at breakfast and said, “Capers thinks maybe we should try Lithium.” She handed me the ole familiar dual-colored capsule. Was it gray and kind of dull yellow? That’s what I recall.

I thought, “Gee, one more pill that won’t do anything for my eating disorder.” I didn’t think much of it, and certainly didn’t say that out loud. I took the pill, although I must say I was often scared to try new pills I didn’t know much about.

Later that day, yes, there was a change. I never felt much effect from any other pill except some made me pace back and forth. But this one stopped binge eating immediately. No other had done this. It was like a miracle.

I didn’t tell anyone. How could I? I just said “I feel better.” Of course, I felt super delighted since the binge eating had stopped. I felt freed up, like I could now go back to school and go back to being me again. Finally, I told Loul MacIntosh, one of the staff, though I didn’t tell her about my eating disorder. I only told her Lithium was like a miracle for me.

Loul told me it was “impossible” for Lithium to help after only one pill. I felt terrible that she said that. I had been discredited by someone I admired. But that’s what happened! I insisted.

Oddly, in 1986, I tried to go back to Gould Farm. I hadn’t binged for a couple of years. By then, I had lost the small amount of excess weight I had gained from binge eating. Gould Farm wasn’t used to seeing me fit and trim, which was how I had been usually. So they claimed I had anorexia and rejected me. Loul wrote to me a rather degrading letter and I decided I didn’t need that nonsense anymore. They were the ones who had denied the ED in 1984 when I really needed someone to listen and care, and didn’t get it.

There were other things happening, too. I have never been manic except right before that second Gould Farm visit. This was a reaction to psych meds and it came after my arrival in a hospital and quickly ended. I was told it wasn’t true mania, maybe hypomania. They had me drugged on 1300 mgs Thorazine when I went for that second Gould Farm visit. I could barely keep my eyes open.

Merrifield wasn’t my doctor when i went through the hypomania, but he saw me, since he was the head doctor for that psych unit at Emerson Hospital in Concord, Massashusetts. In fact, he opened his mouth in an “O” shape and raised his one eyebrow, saying “Are you for real?” I was talking a mile a minute and cracking rather inappropriate jokes. I had another doc then and it was his decision to drug me with the Thorazine. After the Gould Farm failed visit, I felt even worse due to the rejection from both the Farm and Loul, plus I was crashing off the drug-induced high. Not only that, the other doctor also decided he had too large a caseload and had turned me over to none but Merrifield. So it was too much rejection to handle and I was terribly depressed. It was Thanksgiving 1986, the weekend I met my wonderful boyfriend Joe in Emerson Hospital’s psych unit smoking room. (It used to be Wheeler III but moved.)

Eventually, Merrifield announced in a family meeting that I was bipolar. He may have used the term, “manic-depressive.” I remember my mom broke into a huge grin. I think she said something, like “Yay!” but not particularly audibly, and then, I saw my parents beaming at each other rather triumphantly. I thought, “So you weren’t pleased with the sound of schizophrenia, but manic-depressive is more sane so it’s okay?” I said nothing.

I put up with Merrifield an entire five years. I never liked him except maybe the first week or two. My parents didn’t want me to stay with him, especially my mom. They felt he didn’t keep up with the research and he didn’t seem to listen well nor understand what I was going through. I was always hoping and waiting for a convenient excuse to fire him. I didn’t want to hurt his feelings! The whole time, he poked fun of me whenever I brought up ED. He literally laughed and said it was “nothing.” I gave up rather quickly trying to get him to listen. What’s worse, as soon as he gave me the drug Nortryptyline, the binge eating  came back with a vengeance. He insisted it was “trivial” and that I had to stay on it. He insisted that it was “impossible” for the drug to cause binge eating. But that’s what happened! I kept telling him this over and over but he was a stubborn fool.

My ED scared me. There were times I felt I couldn’t trust myself at all around food. I wanted someone to be with me. There was no one who took me seriously. My only choice was to go running back to the hospital again and again. When I told them about ED, they’d turn me away saying “it’s nothing.” But if I said I felt suicidal, they’d take me. I knew in the back of my mind what I was doing was dishonest, but I rationalized it all away, telling myself I had thought of suicide, hadn’t I? I had only been truly suicidal at age 26, but now, all I had to do was think of death, and they’d take me. I didn’t even know the difference. That’s how I ended up with “chronic suicidality” on record. Now, I look back and realize that I was only doing what I had to do to survive, but it ended up reflecting badly on me. I had no other choice.

These days, I do realize that I have moodswings, and by all means, “rapid cycling.” I do not, nor ever did get extreme highs, but I did get extremely depressed as a result of poor eating over many years. I was a mess because of the multiple drugs. Now, drug-free, I can say I enjoy that not every day is the same. I don’t know why they interpreted rather normal ups and downs as “bipolar,” but I can say once they got that into their heads, I began to believe it, too. I dutifully rated my moods on that one to ten scale, and faithfully reported symptoms.

I can’t say life was bad like that. But it was a very limited life. My world was tiny. Me and my treatment buddies. While my former classmates had graduated and obtained higher degrees and enjoying faculty positions at music schools, I was going to group, attending therapy, taking pills, and watching TV. My accomplishments were praised profusely. Working a minimum wage job part time. Yep, that was me. That was all I was considered good for.

I did fire Merrifield. My therapist wasn’t too pleased since she seemed to revere him like he was God. Somehow, I thought McLean must have all the answers beginning in the mid-1990’s. I thought they were the ones who would cure me once and for all.

Oddly, I was always hoping for the answer from those who had no answers for what really ailed me. Many, not all, of those docs acted like they were the Saviors of Humankind. I waited to see if that was true and found out they knew nothing of eating disorders, so I figured they did not know Everything as they had claimed.

I am much happier now. I am never depressed and never “too high.” I don’t pace now. All that was from the drugs, not mania.  I do get discouraged, yes, but that is always brief. That’s why I like that I am “rapid cycling” and that none of that sticks around long. The last time I considered suicide (no, I was not actively suicidal, I only thought of it briefly) was when I found out, a year ago, that my book hadn’t sold.

This year, life is better. What’s amazing is that old friends are coming back. Many are now acknowledging that they had me wrong. Many were going through hard times themselves. Still others had no clue that during the last few years of psych I was being abused. They never realized I was being treated with such bigotry in my surrounding community. I can’t expect them to magically know, nor to understand nor instantly believe me. I can’t blame them for being skeptical.  They did indeed doubt my word. However, now, much of the attitude is turning around and I think I am making headway.

Finally, I am able to think in terms of “career.” I haven’t thought of career since my last semester of college before shrinkage, in 1981. Shrinkage halted my career in its tracks. That, my friends, never had to be permanent. I know that now.  So I am pulling out of the muck.

Recommended websites

There are some terrific websites out there that I recommend. The ones many of us know about that get a huge amount of traffic and are growing very fast are:

http://www.RxISK.org — This site is run by David Healy. There’s a lot of compiled research here and information about psych drugs.

http://www.madinamerica.com – this is a news and information site in blog format. People can comment on the articles and also there are separate forums to continue the dialogue. I have had two articles published with them and another is in queue. A variety of viewpoints are presented.

http://www.beyondmeds.com (or maybe dot org?) This is Monica Cassani’s site. Lots of insight here and info.

http://www.breggin.com – Dr. Breggin has worked in the field for a long time. Interestingly, he started out in Boston and I believe he is Harvard-trained. As you know, that’s where I came from.

http://www.psychrights.org – This site is amazing, packed with info. Attorney Jim Gottstein took on the Zyprexa company and won! Thank you thank you thank you! You’ll find much legal info here.

http://www.mindfreedom.org – This is a worldwide organization that was started by David Oaks. MFI has done amazing work not only in USA, but in Canada and all over the world. I highly recommend getting an MFI Shield. While the Shield isn’t always a guarantee, it often saves people from what would end up being horrendous situations. MFI ran the “I got better” campaign and also Creative Maladjustment Week, inspired by the work of Rev. Dr. Martin Luther King, Jr., honoring creativity and human uniqueness worldwide.

Here are some awesome little-known sites I highly recommend:

http://www.therapyabuse.org – what do you do if you are abused by a therapist? Go here and learn you are not alone.

http://www.adisorderedworld.com – For those with ED or with kids who have ED, check out what this amazing investigative journalist, a longtime sufferer herself, has confirmed (that we’ve been suspecting all along but didn’t dare say).

http://www.disruptedphysician.com – this is a terrific blog produced by Michael Lawrence Langan, MD. This doctor worked in Boston. He made some interesting and very important discoveries and is now blogging to expose something many of us didn’t even know existed.

http://www.bpdtransformation.com – I just discovered this site. This site explains BPD-type behavior. This was an eye opener for me. I always thought it was bad behavior picked up in hospitals. Apparently, as a result of child abuse, a person can grow up seeing the world very differently from his peers. If you have anyone in your life who acts so-called “borderline,” this site explains possible reasons why. There is growing evidence that this behavior is not a permanent defect of personality, but a very nasty phase of life that most people grow out of.

http://www.mildlydisthymicinamerica.tumblr.com – As you might guess, this site, which is growing fast, is a reaction to Mad In America’s insistence on upholding the expertise of those with letters after their names. Those with lived experience (those who have been patients) are THE number one experts, since we have lived through it. Some terrific stuff is published  here. Take a look!

http://www.pamelaspirowagner.com – Pam used to blog for schizophrenia.com. I remember her blog there as “wagblog.” (I wanted to blog for them once, too, but I guess they decided I wasn’t compliant enough, or not schiz enough.) Pam is an amazing visual artist and she has produced some wonderful content here.

There are some awesome sites out there. I’ll be sharing more soon!