I am none of the above. I am a woman with bipolar affective disorder who had a bad experience with ECT (and have learned since then that my experience is common). Since that time, I have spent a lot of time and money researching this controversial treatment, looking for answers. Why did it happen to me? And why does the ECT industry tell me I'm wrong?

This page is not an attempt to persuade anyone not to undergo ECT, nor am I trying to see ECT banned. I have suffered from suicidal depression myself, and know the desperation it can bring. If a person *wants* ECT, that is an individual choice, and it is not mine to make. My goals concerning ECT:

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 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.

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 ECT proponents claim that studies showing brain damage and permanent negative effects are out of date.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.

I certainly don't want to believe that the very people we entrust with our health would deliberately harm us. But in the last three years of intense research, in talking with hundreds 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 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 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 life-saving treatment to those in need. I am neither anti-psychiatry, 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 this treatment.

My brother, who works for Pfizer-Roerig (one of the largest pharmaceutical companies, a company I grew up around because of family ties), knew a number of psychiatrists. He consulted with one of the big shots on ECT, who of course assured him it was safe and very effective. And, having grown up under the Pfizer umbrella, I was raised to never question medical opinion.

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 re-emerge. Dr. E finally wins this round.

And so I was given 12 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.

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, and they refused to give me aspirin. I don't know why. (Probably the old Tylenol thing, where docs in the hospital will give Tylenol, but not aspirin. I have no idea why they do that, but they do. Tylenol doesn't do a thing for me, while aspirin is a godsend.)

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'm not Russian, but speak it fluently...learned in college and while living there)

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 know.

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, one year ago.

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 doesn'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 just a Scientologist. A person on Usenet recently charged that I *didn't* lose any memory, but instead, didn't want to admit I'd made a mistake.

The hypocrisy of that is astounding...wanting full acknowledgment that ECT can help some, yet saying that my own experience is my own unwillingness to admit a mistake. Feh.

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.

The most heart-wrenching episode occurred when TWA Flight 800 went down. I knew two people on that plane, a young husband and wife. I held their baby in my arms, and have a picture of us together. But god help me, I can't remember them. Lenny (the former NY boyfriend) called me when the plane crashed to tell me they were on the plane and had been killed. He was distraught, not only because he works for TWA at JFK and was working the night the plane crashed, but because he lost two close friends.

Over a year ago, I went to visit Lenny in New York, and we visited the grave. I cried for the people who died on that flight, and I cried for the families left behind.

But most of all, I cried for myself. For the lost memories, for the friends I don't remember. For the two people who should be remembered forever, who died in a tragedy that no one can forget. The images of scattered wreckage, burning, amid a lost shoe; of loved ones left behind standing on the beaches of Long Island, tossing flowers into a sea that cruelly welcomed their loved ones when a plane exploded; snapshots of a small child, laughing in her mother's arms, unaware that it would not last.

I can look at a picture of that couple, and I can look at a picture of myself holding their beautiful baby, now an orphan, but I have no memory of them. None. I should be able to have some memories of my lost friends, but it's as if they never existed in my mind.

And the American Psychiatric Association says I'm misremembering.

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 something else.

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.

Juli Lawrence
ECT survivor

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