It’s a very upsetting feeling to not know yourself or your own life

From “J’s” testimony at the Public Hearings into Electroconvulsive Therapy held in Toronto, April 2005:

I had thirty bilateral treatments over the course of a couple of months. I do have a little bit of memory of the actual treatments themselves. … I just laid down, they put an needle in my arm. I counted backwards and kind of went “Ahhh!” into this nice little sleepyland. Then when I woke up I would be on a gurney in a hallway and I would have no idea what year it was, what country I was in. Things like that. But over the course of a couple of hours, I would figure out what year it was, what country I was in. But as the treatments progressed, the memory became more and more difficult to get back and there was bigger and bigger gaps each time afterwards…

So at that point I had to do extensive research into who I was, what my life had been, how to do things like read and write and do math. It was like I was sort of an infant relearning how to exist in the world and who I had been before all of this had happened. … There are still very, very large gaps in my memory about a big part of my life. Like other people who have undergone ECT I sort of dread people coming up to me and saying: “You remember me?” Because quite often I don’t. … So I am sort of a cold, distant person or I have the choice of going into extensive detail about what happened to me and telling, disclosing all these things like the ECT and that’s: “WHY I don’t remember you. Sorry.”I hold on to old friends very dearly because they are like repositories of information about me that I can access. They’ll have stories about me that I would have no clue about…

Pretty much my entire history of what had happened to me before 1995 was wiped out by the ECT. So I kind of was going: “Who am I?”, “What has my life consisted of?” As well as how I am going to cope with existing and you know, that terrifying thing called the future. …

The man who spoke earlier was talking about how it affects your learning capabilities and how smart you may be or feel. That is definitely something considering that at one point I couldn’t do the calculation of 7 X 8 . You know at this point it can be difficult for me to learn things. I don’t know how much that has to do with ECT but definitely when I talk to friends who I knew a long time ago, they say that I’m not as quick as I used to be and that I might not be as smart as I used to be, which is a very upsetting thing. … One of the most distressing things I find is thinking about the fact that when I am trying to remember things, the memories I have are not necessarily my own memories because of all the research that I did, talking to people and looking through books and you know, having big meetings with my friends about what’s happened in the past and stuff. I am taking their word for things that have happened in my life. And then, you, know, my memory isn’t perfect so I am just remembering what they remember about things about my life, and you know. So someone asks me a question about something that’s happened in my past and I am like: “Well I think I was told this. So that’s the answer that I am giving you but honestly I have no idea whether or not that’s true.” It’s a very, very upsetting feeling to not know yourself or your own life except through second hand experience.

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