Its all changed

RE: RE: Its all changed

Submitted by Gretchen on Tue, 2005-01-25 - 01:25

Hey you! First thing I read was your handle. "insane"? No. I have epilepsy. I'm 56. Was diagnosed 6 years ago. But I have had it all of my life, even treated when I was 7 years old, which I never knew was treatment for epilepsy, but my mother never told me I had it. The result of not being treated most of my life is I had all these weird things going on I could feel, I knew no one else did and I felt often - I was NUTS! Differrent. Afraid people would find out who I REALLy was. I felt I lived a hidden life. Or two lives. The one I showed everyone else. And the person who lived inside of me that no one knew and I wasn't about to expose because every time I did? I got embarrassed or hurt, or both. And felt nuttier, or more insane. I personally would like to have you think better of YOU. Change your handle? Drop that "insane" word off. You're not. You've got epilepsy. BIG difference.My son had epilepsy from infancy, we knew it, he was treated and we had on and off again control. His sz's just stopped for no known reason at 19 for 6 years then returned. He also has exremely severe asthma, as do I, and lost 2/3 of his right lung and 3 ribs last year as a result of asthma complicated by pneumonia. He is married. Has two beautiful little girls. Had his triumphs and for sure in many ways his struggles going through school. I was SO relieved when he graduated from HS. Not because he made it. Because the struggle for him of public school was at last over.So my son has multiple health problems, more than I listed and he took a lot of medication. I even had to set an alarm clock every 2 hours at night and medicate him with something or other. Made trips to the school each day to give him breathing treatments. I thought? I was one darn good mom. What I also was, was one worn out mom. I'm sure my fatigue at times to him showed as rejection. It wasn't. It was only what it was, fatigued, I was tired.One of my goals for him as he grew was to be responsible for his medications. Helping him to grow independent from me as one day I knew he would want to do. He did an excellent job too starting in grade school. But then he hit his teens and he was on Depakote, which we both call Depabloat because we both get FAT on it, and he was teased, his self esteem went into the gutter. He started seeing he had differences from others. His body was changing, his needs as a person were changing, his AEDs made him gain in his case a large amount of weight he has now lost and he didn't like himself and assumed no one else could, not did, could, - all because he was, as all people his age, entering or in adolescence which is hard and he had these additional problems to sort through too and only he could do it. Suddenly this child I had grown very close with because we'd spent so much hospital time with together, just he and I, started skipping medications. Got angry he had to take them although he never said that. What he did say was he was sick of being different from others. All of his life he was different in ways, he said, he felt. Or? What is different? None of us are the same. But to him he felt the entire world was staring at him taking medications, wheezing and seizing he called it. He would lash out at me when I'd check his pill minder and I had to. I knew how sick he'd get missing his medications. But he had a point. He didn't want a 'mommy' any longer. He wanted a 'mom'. He was sick of side effects, the reasons he had to take medications, his weight gains from Depakote which does tend to blow people up, it sure does he and I, and that's reasonable. What wasn't reasonable was skipping his AEDs. I would see he wasn't taking all his pills all the time and I started to nag him. He got mad. I got mad. So I tried to "establish communication" and did it by yelling - WHY AREN'T YOU TAKING YOUR MEDICATIONS? DO YOU KNOW I'VE SPENT YOUR ENTIRE LIFE KEEPING YOU ALIVE AND WHAT IN THE H*** ARE YOU DOING? DO I CARE MORE ABOUT YOU THAN YOU CARE ABOUT YOURSELF? And other delightful, frustrated un-motherly things, I admit. What I'm admitting is that I saw things for him one dimensionally. I had my priorities for him, but he had his own. I was angry with him because I was afraid for him. I was afraid for him because I had very deep love, concern and an inability to ease him with his health problems through the difficult adolescent years. He screamed back at me DO YOU KNOW WHAT IT'S LIKE TO BE FAT WHEN EVERYONE ELSE ISN'T? DO YOU KNOW WHAT MY LIFE HAS BEEN LIKE? WHAT I GO THROUGH EVERY DAY? And ended it with - do you know how you treat me? Well, lovingly. NO, he screamed. You see a big fat defect. No, I didn't. I saw a person I loved in pain, that I couldn't reach, because he wasn't reachable at that time. He kept growing and what he taught me was that no matter how hard I tried to help him? And yes, we went through the diets, carrot sticks, exercise routine too and all that felt to him I know now, was demeaning. I was trying to help him. He felt I was trying to improve him because I found him lacking. I have never felt that way about him. I didn't know at that time how to help. He felt like all I saw was what was wrong with him, not what was right with him. But that's not what I saw. I saw my loved son who hurt. I used the only means I knew of to help him. I had him go to a psychologist and he'd sit in stoney silence with his arms across his chest. Wouldn't talk. Still growing, gaining years though and eventually he started getting involved in things where he could accomplish things. He became a drummer. Worked hard at it. Got on a prestigious drum and bugle corp. He was very proud of that and so was I but I still loved him just the same as I did before. He loved himself better though. He asked a girl out and she said no, she didn't want to go out with a "wheezer and a seizer". That was many years ago. Those words still sting him. But he decided, with quaking knees, he'd ask another girl out. He made friends with this one first though first. Tested the "girl" waters. Asked her out finally, they started dating, going to school functions, parties, over to our house where there were always many kids around. He felt lovable then. But you know what? He always was. He had to find that out for himself. My point is that I couldn't make him feel good or bad about himself. He couldn't read my mind either and when he tried he was wrong. It was within him, it is within you, to decide who you are. No one can make you be anyone else. Others can influence you and make you feel bad though and all of us must fight that. That can be a very hard struggle too. As an epileptic myself? I struggle with that often. Be very careful in writing the script you think your mother or other people are thinking about you. Most often, most of us are writing fiction. What I read in your post is the same problem I think my son had. He didn't like himself. He had a lot of self doubt and insecurities. He felt it was because he was "defective", a "burden". I adored him but I tried to help him too much and I gave him the opinion that he was not good enough for me and that was never, has never for one minute been true. I adored and do adore him. I hated to see his pain though and I tried to help him so much, I gave him the opinion he wasn't good enough for me. I'd do anything to change that. I can't, those years are gone. Sometimes too I'd be preoccupied, in a bad mood and he'd think it was bcause of him. I had many children, a job, a marriage, many things in my life that could and did cause me concern at times that had nothing to do with him. I thought he'd know that. He thought I'd see he felt rejected by me at times I was preoccupied with other problems. The up side of all of this is that now he's a young adult and we've talked about all of this and now we can laugh at some of the misconceptions, crazy thoughts he had, crazy attempts I made to help him. I wish we would have communicated better though when he hurt.One of my daughters said something to me once when she was 13 that really opened my eyes wide. She was developing into a beautiful young woman. I thought she'd be thrilled but she wasn't. She came to me and complained her body was changing, and she felt like she inhabited someone else's body she didn't know. She liked the old one just fine. Her personality was too, her thoughts didn't seem to be her own anymore. She worried about what some of her thoughts were. She was afraid and resented all these changes in herself, felt she didn't know herself any longer, was afraid of these big differences happening inside and outside of her, and it frightened and angered her. She didn't ask for all these changes, nor was she ready, not that you aren't but you are in a time of change and that is very hard in itself. My point too is though you are going through not just epilepsy and all that it means but also a very big time in your life where your body, your needs and wants, personality will have the biggest change then probably will ever happen again. Or, the world got turned upside down. You have to re-establish your identity in adolescence. All of us try to figure out who we are by trying to see how we think others see us. The problem with that is? We're not always right. Often wrong. I still do that. I'm still often wrong. I don't think I have your answer, but I think that might be one of your problems and you sound smart, I'll bet you can figure out from there how to make yourself feel better. Another thing? Not you, not me, not anyone I know, can read the minds of anyone else. Your mother I'll bet has totally different thoughts than what you are GUESSING. Right? The guessing part? Your mother also has many things in her life besides being a parent. Maybe some of those things are concerning her. She thinks she's keeping it to herself, but can any of us? I don't think so. Our feelings come out in one way or another.So, having 11 c hildren and communication pathways often misunderstood, or I didn't have enough time to give each person, or when an angry or pouting child wouldn't talk or any kind of angry or hurt feelings I had each of my children write me a letter and tell me exactly, not sort of, exactly how they felt. I told them if they wrote me a letter then neither of us would have quick, not meant later hot words, then hurt feelings. That's what they all had to do. It was amazing to me and them, remains so for all of us, how very wrong we interpreted each other. I then would write back to my children when I got their letters and eventually sometimes if it was still needed the sharp edges were taken off hurt feelings and we could talk, rationally, without yelling and a deeper understanding for us both. Would you consider writing to your mother a letter telling her of your feelings? If you do remember this: she too is a person with feelings. She has apparently raised a very nice daughter, you. That says to me she has invested her love in you. Maybe your job now is to lead her in your needs. Don't leave her guessing either.Not knowing your weight, and frankly not caring either because for me regarding you, that's not my interest, but when I had to take Depakote? I gained over 50 pounds, very quickly. I wasn't plump, fun to hold, just more to love. I was FAT! All I can say about that is, that was very esteem busting. I felt like the entire world looked at - The Fat Woman, everywhere I went. It was hard. Love yourself first. Would you write your mom a letter? You write very well. Use that talent and if you write with the kindness you want? I think you'll find out how much your mother does care for you, love you, and she needs you - to guide her.{{{{smooch}}}}}