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 ECT proponents claim that studies showing brain damage and permanent negative effects are out of date.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

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 ECT 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.