April 3rd, 2009: Frustrations with Forgetting.
In the last 3 months, I've realized that the memory loss I sustained during my illness is more extensive than I had previously imagined. I woke up in the hospital around Christmas and realized I had forgotten at least a month's worth of time- completely erased, blank slate, no idea what happened. In the time since then, I've realized and learned that my memory loss goes way further back than that, in fact, I dont really know how far back it goes, because by the time I start remembering things again, I don't know whether I've forgotten them because of my illness, or whether I've forgotten them simply because it was a long time ago (my memory has never been great to start with).
My favorite way of explaining the situation is this: Videos are made up of millions of still photographs moving in quick succession. Of the video of my life from 2008, I have a few handfuls of photos as well as several small video clips, audio not included. The memory I have is entirely visual and emotional. The entire soundtrack to my life in 2008 is gone. As far as emotional memory, I know things, and I know how I feel about things without remembering the specific things themselves. For example: I have a book. I know that I read the book. I even know which class I read the book for, but I can't remember what the book is about. I can't remember reading, writing about, or discussing the book. If I re-read the book, it is still as surprising as the first time, but throughout it all, I still know that I liked the book.
In short, I know things without knowing how I know them. I don't know things that I know I should know. I'm constantly trying to remember things, and in doing so, I look for similarities or familiarity where there is none. I go through an area where I know things should be familiar and they're not. It's intensely frustrating.
I don't REMEMBER much of the last year of my life. That doesn't mean I can't tell you about it, but it does mean that I can only tell you what I myself have been told. I have re-learned a lot of things. My fiance tells me things, tells me how my life was. My parents tell me things, and my friends tell me things. I have pictures and diary entries and facebook posts of things that I did, but just because I have re-learned them enough to pass on the information, it doesn't mean that I actually remember. For all I know, my friends and family could have completely falsified all the information I've been told over the last 3 months, and I wouldn't know any better, but I trust, because they love me, that that's not the case.
Now for the frustrating part. I try and explain things to people, as I have just done. I have frequent conversations about the experience of losing one's memory. The truth is though, that it is impossible to understand unless you've experienced it. Amnesia isn't the same sort of memory loss as just forgetting something because it was a long time ago. If you forgot an event because it was 5 years ago, and someone tells you about it, you're likely going to recall it after some prompting, or have a vague memory of it, or even just remember that it was true without having memory of the event itself. Amnesia is different. If my fiance tells me I did something, I have to trust him. Most of the time, there is no partial recall, no prompting, no vague memory, no underlying truth. It's just plain gone. Sometimes, on a rare occasion, there will be a little bit of memory, a detail, or a still picture that pops into mind. For example: he told me that we bought new furniture in September, right before the bedbug stuff happened. With that bit of prompting, I knew it was brown, and I could almost picture it in my head. That tiny bit of memory was still there, but I never would have discovered it on my own. Scenarios like that used to happen quite a bit actually, and then I got used to it. I started assuming that things would all be like that, and if I asked enough questions, I could remember stuff eventually. I was wrong. A lot of things are just plain gone, and no amount of prompting will bring them back.
Sometimes people ask me if I would want to remember. From the sounds of it, my life wasn't in the greatest shape anyway, and I was pretty unhappy. Between the bedbug and apartment fiasco, and schoolwork kicking my ass, as well as trying to maintain a long-distance-relationship under all that stress, people ask if I want to remember. That's one of the most frustrating things. YES, I want to remember. Just because something was hard doesn't mean that erasing it is going to be any easier. In fact, knowing all that I dealt with and knowing now that I "get off easy" by not having to deal with it, doesn't make things better, it makes it worse. It even makes me feel guilty that I'm "lucky" enough to not remember.
But what these same people don't understand is that amnesia is not some sort of happy oblivion. You don't wake up and go about your life believing that it's the same day over and over and over again (think of the movie 50 First Dates). You don't wake up and have people treat you the same way as they did when you fell asleep. It's not like starting over. It's not like going backwards and getting to redo things. It's not like that at all.
I had one friend, who's own life has been notoriously difficult, once tell me that I had the "luxury of forgetting". Let me tell you something, forgetting is not a luxury. It is not getting to start over. It's not getting to pick up where you left off. It's not getting a second chance. It's not getting a blank slate. Everyone around you, everything around you, has moved on. Everything has changed. People have changed. People's opinions have changed. Things have changed. The world has changed. You have changed. Amnesia isn't going back in time and getting to relive things and relearn things and redo things that you messed up- it's waking up and being completely and totally terrified. It's having no idea where you are, when you are, what things are going on around you. It's having zero knowledge of what you've done, or where you've been, or how long you've been out of it. It's waking up surrounded by a fog; you're completely encased in uncertainty and fear.
Luckily for me, I have re-learned most of my life. Between my family and friends telling me things, the still pictures I have in my head, and the underlying instinctual and emotional knowledge I have of some facts, I have pieced together my life in the year 2008. Some days, things still catch me off guard, but for the most part, I'm fine. The hardest part is trying to explain to people what it's like to not remember. Trying to explain to people that it's not a "clean slate" a "do-over" or a "luxury". It's just plain gone.
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