"This Romeo is bleeding, but you can't see his blood."
--Jon Bon Jovi
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Why I created the ect.org Web Site
I created ect.org in 1995 after having had ECT myself the year before and having a very bad result. It started simply, a way of sharing information with others who were searching for answers. It's grown into an extensive website with what I hope is comprehensive information that will offer support and provide some of the answers to many of your questions.
I receive a lot of email every day, from persons considering ECT, loved ones, and persons who have had ECT and don't understand what happened. They were given promises, and those promises were broken. Yet it never fails to astound me when I receive email full of the lies the industry continues to tell. I absolutely swear that out in the field, in modern day civilization, psychiatrists are telling their patients that ECT is the miracle cure, it will cure your mental illness, your migraines, and even Alzheimer's Disease. (That was even testified as fact in a court of law, and swallowed by a US judge, who then ordered forced ECT on a woman in her 80s.)
I am called many things by the ECT industry and proponents - a Scientologist, a nut case, anti-psychiatry zealot.
I am none of the above. I am a woman who was severely depressed (re-diagnosed as bipolar disorder during the ECT treatments) and had ECT in 1994. The ECT, according to my mother, lifted me from a depression into a brief silliness (the euphoric high that typically follows ECT), quickly followed by an even worse depression than before. And it left me with severe memory loss, and I believe some cognitive damage.
I'm interested in the people who say "But you're so articulate now, how could it have possibly been destructive?" My answer: You do not know me. You do not know what I was like before I had the ECT, and you do not know what I am like now. Do not pretend that you know what I feel, what I think or who I am. A few words on a website does not give you a picture of me, other than the picture I *choose* to present in public. Most people who know me, other than those EXTREMELY close to me never even knew I was depressed. I have a public face, and a private face, and the two are very different. I work very hard at maintaining the public face, and I have worked hard to recover from a very low point. I have never said I was brain dead, simply that there was damage.
It took me a year to emerge from the fog that resulted from the ECT. And it's taken six years to recover to the point that I am able to fully articulate what has happened. I have spent the last years reading the research, including the studies that ECT experts use to promote the treatment. Day by day, I grow more convinced that ECT is not an effective treatment, and that it does little more than provide a brief respite from depression, followed by despair and hopelessness.....and potential damage to the brain.
This website is not an attempt to dissuade anyone from having ECT. If you have chosen to have the treatment, I support your decision and wish you well. If you've come looking for information, I sincerely hope that you will find genuine sources of information presenting all sides of ECT, not just the public face that the industry presents. However, you will find plenty of pro-ECT information here, because I think it's important to look at this from every angle.
Yes, there are anecdotal stories that ECT is a miracle cure. And those are trotted out continually when proponents of the treatment try to deflect any negative information. Yet, when former patients come to the forefront to discuss their bad experiences, the proponents say their concerns aren't valid, that anecdotal information isn't worthy of recognition. Well, folks, you can't have it both ways. I believe that if you're going to listen to anecdotal information, you must listen to both sides, not just the "ECT saved my life" viewpoint. On the other hand, I do believe it's important to hear the happy endings as well. They are important. All of the voices of ECT are important, and should be heard...including mine.
I have been threatened and I have been harassed because of my views. I have had emails from fanatics that included viruses; pictures of mutilated animals with threats that I'm next; name calling (Scientologist, as well as words that are offensive to women); gifs saying f*** you wh***; and "orders" telling me to stop what I'm doing. People are now on notice that, from this point on, all emails like these will be publicly posted. You will see various threats of lawsuits posted around the site, and I will post all emails containing legal and any other kind of threat.
I will not submit to the powers that be, and I will be heard. I am continually called a Scientologist, and it makes me angry. I don't believe that my religious beliefs are anyone's business but my own, but for the record....I was raised a good Presbyterian and if I went to church today, that is the church I would choose.
I do have some goals regarding ECT and those include:
1. Regulation. As it stands, this treatment is not regulated. Devices
are not tested until they are used in practice. And as we've seen
with the recent MECTA lawsuit, consequences can be disastrous.
Moreover, there's been no recall of this machine. How many of
these machines are out there still being used?
I certainly don't want to believe that the very people we entrust with our
health would deliberately harm us. But in the last years of intense
research, in talking with thousands of ECT patients, I do believe that we, the public and consumers, are not being told the full truth. Whether that's out of a misguided, paternalistic attempt to do what's "best" for the mentally ill, who don't know any
better, or whether it's financial, I can't say for sure. I suspect it's a
combination of the two.
I want statistics kept in every state. Currently, only four states -
California, Massachusetts, Colorado, and Texas - maintain any sort
of record keeping. Groups like NAMI and the APA oppose this,
saying it adds a layer of red tape. Bullshit. It gives data to
researchers on the number of patients receiving ECT, complication
rates, and demographics. We don't even know the number of
patients having ECT...any figures are estimates only.
Even very strongly pro-ECT doctors are recognizing that ECT treatment is a free-for-all. With some regulation, perhaps there would be standards, rules, and accountability instead of what is now nothing more than haphazardness.
2. Informed consent. Patients have the right to know the full
risks, not a watered-down version that the kinder, gentler ECT of
today is without any risk. In public, doctors say memory loss and
cognitive damage doesn't occur. In private, it's accepted as fact,
and studies are done to find drugs to lessen this. The truth
beforehand, IMO, would result in better outcomes for patients.
They would know *before* ECT that they might have substantial,
permanent memory loss, and would be able to make a valid choice
that such loss outweighed continuing depression. And they should be
told it is not 100 percent effective, nor do the effects last in most
cases. They should be made aware of maintenance ECT *before*
they undergo a series, not when their treatments have failed.
3. An end to forced ECT. This is not a treatment that should be
given without consent. Enough said.
4. More research into the lasting effects of ECT. ECT proponents
claim that studies showing brain damage and permanent negative
effects are out of date. But they are the only studies that exist.
Let's do more research into this - the funding is there. Promises are not being kept.
I think the doctors on the front line, for the most part, are sincere in their
belief that they are helping us. And certainly in some cases, patients have
credited ECT with saving their lives. Their views are every bit as important as
those people who say ECT has ruined theirs.
Quite often, people charge that I'm just an anti-psychiatry zealot, someone out
to deny lifesaving treatment to those in need. I am neither anti-psychiatry, (I still see a psychiatrist every other week)
nor am I out to ban ECT. I do want it regulated, and I want my end of the
spectrum, someone who has been harmed by ECT, recognized.
I had ECT in July 1994 and this is my experience. I am one of many.
Honestly, I don't remember most of what I'm going to tell you. It's based on
stories from family and friends, and from writings in my journal.
I was suffering a severe depression, and my psychiatrist, like so many others,
felt the medications weren't working. He had been pushing for ECT for months,
but I resisted. He told me the "new and improved" ECT was nothing like the
ECT of the past. They now used unilateral instead of bilateral, and a lot less
power. He engaged my family in the fight, and they joined him in encouraging
Finally, according to my journal, my psychiatrist gave me an ultimatum. Have the
ECT or get lost. This wasn't force, but it certainly was coercion. My feelings
were so clear, as evidenced in my journal:
I feel like I'm going to die. The blackness surrounds me and
there's no way out. Today I asked Dr. E if I could try a couple of
drugs I'd heard about from Dr. Goldberg, but he yelled at me. Said
he didn't care how the hell they did it at Columbia. This is how we
do it here.
And he told me I had to have ECT, or he wanted me out as his
patient. I don't have a choice anymore. No other doctor will take
me. I'm such a bad patient. Hard to treat. No one wants that. They
want a patient who will cheerfully take her Prozac and get better. I
fail, even at depression. So I guess I'll have the fucking ECT.
Nothing left to try. It worries me, but at least it will work, and get
rid of this black cloud that is swallowing me whole. Let's
electrocute that part of me, sentence it to death, and let my old
self reemerge. Dr. E finally wins this round.
And so I was given a series of bilateral treatments. Apparently they talk a good talk
about unilateral, but in reality it's not used that much. In my dealings with so
many ECT patients, I've only run into one person who actually had unilateral. And it didn't help his depression at all.
Frankly, I don't remember a thing. I was in the hospital for the entire time.
Each day, according to accounts from others, I had a bad headache.
For one day, I refused to speak any English, my native language. I spoke only
Russian, and they think I was cussing out the doctor, due to the intensity of my
voice and body language.
I tried to fix my mother up with a man (patient) whose pants kept falling off.
Then I gave him a pair of my sweatpants. My mother was not amused, although
the rest of my family thinks it's hilarious.
My aunt brought me some kitchen towels and placemats with kittens on them. I
thought they were cute and thanked her. This is now a joke, although it's more
tragic than funny, IMO. Each day, I would see the items and say, "Oh, aren't
those cute. Where did they come from?" My mother or aunt would tell me my
aunt brought them. That was a daily event, and continued for weeks after I was
home. For weeks, I would ask, "Oh, aren't those cute. Where did they come
from?" when I saw them on the table.
The worst of all is that I apparently gave my phone number to several patients.
One was a drug dealer, and he called me several times, saying I had given him
my number in hospital, trying to set up drug deals...that I wanted to buy crack.
I've never used crack in my life. I admit that I occasionally indulge in a toke or
two of pot, but I certainly would never attempt to buy it from someone I didn't
I would get calls from men, saying I had consented to go on dates with them,
and got one from a fellow who said I told him he could move in with me. I have
no idea who these people were, except that I'd given my number to them in the
hospital. (My number was unlisted.) From the conversations, I don't think I ever
met any of them outside the hospital. I sure hope not.
Those calls continued until the day I moved to a new town. I've since heard from several ECT patients who have done similar things.
The spring before ECT, I had taken (apparently) a few trips to New York City,
to see my then-boyfriend. He and I are still friends and talk by phone
occasionally. I have absolutely no memory of those trips, although from the
smiles on my face in pictures, I apparently had a wonderful time. The only proof
I have of those trips is plane ticket stubs, photos and conversations with the
gentleman. He and I have talked many times, and I have to fake it, pretending I
remember what he's talking about. (He didn't know I had ECT...he was - very
smartly - against it.)
Recently, I talked to him, and he asked me about something I'd apparently
purchased on one of my NY trips . To this minute, I'm confused about it. I can't
find the item, and have no memory of ever having it. I still have some boxes at
my aunt's house, so perhaps it's there. But it's so bothersome to know that I
have no memory of ever having bought or owned it.
I've lost about two years of my life from memory loss...approx. a year and a half
before the ECT, and about 8 months following. It's just gone. The ECT industry
says that I'm mistaken. Some say I'm a Scientologist, as if my religious belief would cause me to misunderstand what happened to me. I am offended by that, and I am offended that I continually have to publicly proclaim what my religious beliefs are.
The memory loss is heartbreaking because I should have some wonderful
memories of my NY trips. And I'm sure there are many other good times in
there. But I don't remember them.
What hurts the most is the scorn I receive from the ECT industry, from the
doctors who make their living by this, from NAMI, and from the APA. They
simply dismiss my complaints, as they deny the memory loss of so many others.
It's bad enough to have the loss, but then to be told I'm lying, or over
exaggerating, or misunderstanding - it's horrible. They just say it didn't happen.
Or that I'm a Scientologist.
But it did happen. I live it every day.
And I'm a Presbyterian.
(I have removed another story concerning my ECT at the request of those involved.)
Let me again be very clear. I am pro-choice on all things, and that extends to
ECT. I absolutely support the right of anyone who chooses ECT...or chooses
Had I been told honestly that I might lose a portion of my memory, and that I
might suffer permanent cognitive damage, I would not be angry as I am today.
It would not have been so devastating to me. I would have made a more informed decision.
updated April 2002