questions unanswered

Hi~
I'm erica10 on this site, i was diagnosed with ALL when i was 9. I can't relate to not remembering parts of the past, but i can relate to not understanding what's going on. It was hard at age nine to get what they were doing to me, but they tried to help me. If you want to send an email to my webpage i will reply back to it. So don't hesitate. Oh yeah i guess my age and status might help huh.hahaha. I'm 18 years old, currently attending community collge, and i have a wonderful boyfriend that i adore (he also has cancer or had anyway). He goes on this site sometimes to update his stuff. So anyway that's about it. That and i've been in remission for 7 years now. So yeah. Ok well i better go.

Talk to you later,

Erica

What you're feeling is probably as old as the first case of childhood cancer itself. I was diagnosed at about 6 in 1986 with an intramedullary spinal cord astrocytoma. My treatment was strictly radiation, and lots of it. The consequences of all of the events that happened in a span of about 2-3 years still effect my life to this day, at 24 and well beyond the treatment days. I have trouble sleeping, my spine is a well-fused mess, and I honestly don't quite know what to expect as far as my quality of life in my later years. One of the worst things about it is that I hardly remember a thing. I spent every childhood year after treatment trying to put the past behind me. For probably 10 long years I struggled to get somewhere where the past didn't matter, where people stopped asking questions and staring. I was very successful at this, to the point where almost no one knows and certainly no one cares what even happened to me. As long as I'm getting my projects done, or I went to the grocery store, or I'm going out to dinner Friday night, or any number of mundane things that I never got to do or were torturous to do, nobody asks questions, or stares, or whispers anymore. Well, except the wee ones, but every day is another step towards making my peace with them. The point is it doesn't matter, and that realization was confusing and a little disconcerting. Now, I have a beautiful wife, a nice job, some great college memories, everything I thought I'd never have (or would never get fast enough), and I can barely remember a thing about the most important events of my life. I spent a decade not looking at my back because I was ashamed and angry about what was back there, and what they had done. Now that I'll actually spend a moment of my life sitting around with my shirt off, I'm curious about what I've been hiding from myself as well as everyone else all these years. I look in the mirror at the faded scars and feel like I've managed to lose my identity by forgetting everything about what shaped it. I've so successfully put everything behind me that what I should be able to remember- I can't. What I do remember comes in spurts or flashes, mostly of my most intense or painful moments. Usually I don't remember me, but some kind of terrible image cobbled together from vague recollections and horror movies. I do remember that my life wasn't that terrible, once the moment passes, and so I'm trying to tear my way backwards into my own mind to come to grips with who I am and who I've become- again.

I would certainly encourage you to not lose contact with your memories. It sounds like you remember a lot, and you'd be surprised how much you can force yourself, and others, to forget through your own silence and refusal to talk about or face what happened. Your parents probably sacrificed a lot for you, and now seeing the wonderful person that you are and at a good distance from their own trauma, they are probably your best source of information. I'd stress that you spend a lot of time introspectively examining things first. Someone else's memories can all too easily become your own. Try as hard as you can to remember everything looking out from your own head. Obviously you can't remember what you must have looked like hooked up to all of that nonsense, yet that's what I always try- and fail- to imagine. Get as good an idea of how things went as you can, then ask your parents to help you fill in objective things that might help. Dates, places, doctor's names, maybe some pictures of the hospital or the room itself, gradually working toward you. If you can set the stage for everything, you might find it easier to place yourself in it than if you attempt to go the other way around. I'd stress that your WRITE EVERYTHING DOWN as you think. Some things may be wrong, or conflicting, but you can work on that once you've emptied your head. I can't remember much about my old child psychology class in college, but from what I do remember you should have been perfectly able to record stimulatory memories, but you would have had a very difficult time with a sense of self. You can remember what something looked like, or how it smelled, but you might not have the memories of something happening "to you". I was old enough for most of the higher functions to have developed in the later procedures, so I can remember how "I" felt when certain things happened. That probably had a good deal to do with my blocking things out. Good luck, and don't be afraid to upset anyone. You have the right to know as much as you can find out about who you are, and just because a life-defining moment happened when you were very young doesn't make it any less defining or important to remember and understand.

As you can tell I'm comfortably long-winded myself, so feel free to contact me if there's ever anything you'd like to talk about. I also know of a few decent reads on memoir, memory, etc. For what it's worth, I don't think you got off easily. I don't think I could handle what I went through now. The pain, the uncertainty, the disruption of my life, but that doesn't mean I'm not still suffering because of the fact that it all happened at such a young age.

I was diagnosed with ALL at 4, and I know exactly what you mean. I don't know everything about my treatments or what I was on. But we're still survivors, and we still have a story to give. I agree with what everyone else had said. Learn what you can, but focus on the point of surviving and not on how or why you did. I wish you the best!
Andrew