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Thread: I can't help but to think that I'm somewhat responsible (feel bad for my parents).

  1. #1

    I can't help but to think that I'm somewhat responsible (feel bad for my parents).

    Everyday is a struggle for me, but it's even harder for me to watch with my parents go through. I constantly tell my parents (who take the best care of me and the world) that they are doing a good job and I wouldn't want anyone else. But I can't help but wonder what they go through (mentally). Every day I feel as if I have to put on a happy face, because if I told them what was really bothering me it would only make them feel worse.

    I can't do that to them. Me along with my parents are firm believers that there will one day be a cure for spinal cord injuries. In fact, that's what both of my parents live for and would die for if they could make me better.

    This bothers me (although like I said one day there will be a cure) because I am scared of a number of things.

    The health of my parents.

    Wondering if there ever will be a cure for spinal cord injuries.

    And with both me and my parents being firm believers that there will be a cure, what if they never get to see me walk again?

    That scares me the most. It scares me because, I feel that's all we live for. And I know most people would disagree. Saying "you can't change the past, therefore you must live your life to the fullest extent". But I couldn't disagree more (but that's just me).

    Over the years I can't help but feel somewhat responsible for ruining what I believe their lives. I sometimes feel that may be if I would have just passed away my parents would be doing better.

    I don't want people reading this thinking my parents are doing horrible, or are in bad shape. My parents are in good health, but the thing that I don't understand is what they are going through mentally. I can't bare to ask them that question.

    If it were me I think I can deal with this injury (although I'm not quite so sure about the neurogenic pain), but it's my parents. I worry about them all the time. The only thing I really am worried about, is what if they don't get to see me walk again.

    I feel like we are prisoners in our own homes. Paralysis is a devastating catastrophic injury. I try not to let it get the best of me but I cannot help it.

    I hope no one thinks I am complaining to try and bring down those who have overcome the odds and live very fulfilling lives. I take my hat off to those who have.

    It's been five years I graduated from high school and recently just started college (even though I hate college).

    What makes it so difficult is I am a quadriplegic. If I was a paraplegic, at least then I can take care of myself. Watching my parents rearrange their lives to adjust to mine has taken a toll on the over the years. It has been one of the hardest challenges I have faced (at least mentally that is, surpassing the neurogenic pain). If I want to get into standing machine I can't do what they have to. If I need to be catheterized I can't do it they have to. Basically everything I need they have to do. And everything I want to do they have to get me ready for. It's a hellish life.

    I guess what I'm looking for when I post this is just knowing that people are out there that feel the same way as me. If you had a different opinion I love to hear it, but I guess what I need right now is well... well I'm not quite sure what it is.

    I want to do what I can to make them happy, but the only thing that would truly ever make me happy would be to walk again. In fact I think I look more forward to seeing the reaction on my parents faces after I take my first few steps (hopefully) then I am looking forward to it myself.

    I love my parents to death and couldn't ask for better people.

    I want to thank those who have read my post.

    Wow, it is true! It really does help to vent every once in a while.

  2. #2
    Hi, Dann - yes, it does help to vent! Some perspective from a parent's point of view. As parents, we do have choices - I know some parents who won't/can't care for their SCI'ed children; it's just too hard for them. Other parents wouldn't have it any other way. Your parents have chosen to be there for you, and probably have incorporated you and the adjustments they've had to make much easier than you may think. Speaking for me, as a mom, it's just another part of the 'equation' of life, to make sure things are handled for my son. Sure, we've had to make adjustments; but it's all part of the game. I would never, never, ever, have wished that my son had died. He still brings sunshine to my life, and I too, believe that he and I will walk along the sand at the beach together someday.

    _____________
    What people say, what people do, and what they say they do are entirely different things. - Margaret Mead

  3. #3
    Senior Member Clipper's Avatar
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    Dann21,

    Let me start by saying that I understand how you feel with regard to your parents. It devastates me when I sense that I am a burden, or when I see them saddened because of my injury and all of its consequences.

    I know all parents want to see their child return to being able-bodied. But although it's certainly good to have hope for a cure, living for one can lead to a lifetime of disappointment, frustration and unhappiness.

    I see from previous posts that your injury is C5/6. At that level, you are certainly capable of living at least somewhat independently. I know it's scary and full of challenges, but it can be done. If your parents saw you making strides independently, they likely would find happiness in your accomplishments. I know this to be true in my case. I want my parents to focus on the positives in my life so that my injury doesn't dominate all of our lives. I'm C5/6 too.

    Hoping for a cure is important, but don't let it rule your life or your parents' lives. Every step you take in life - whether it be college, living alone, getting a job - will prepare you for the future. Whether that future includes walking again shouldn't influence your motivation.

  4. #4
    Senior Member BeeBee's Avatar
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    Amen. As hard as it is, and it is hard, I'm so glad he didn't die. He almost did. Twice. And we aren't out of the woods, yet. And, no I don't like some of the things I have to do. But I do them because that's the way it is. Don't feel bad that you're still alive. Talk to them, it may help all 3 of you feel better about the situation. As a parent, it helps to understand what you're feeling. I know you don't believe it, but they were once younger, too, and will relate better than you think and, if you really listen, will give you some insight into the future.
    Do you feel guilty because you really are responsible for your accident? I don't know the situation, but if you REALLY are, then that's something you'll have to work out with yourself, not them. If you are not responsible, then stop feeling that you are. If you truly could not have helped in the accident, then you'll have to let that go. Walk thru the incident, as you can remember, step by step and see if there was anything you could have done or reasonably should have done, to prevent what happened.
    Your parents love you, you know that. Tell them that you love them and appreciate what they do and it will be okay with you guys. Oh, and don't forget to tell them you're sorry when you get angry and lash out. You know you didn't mean to take out frustrations on them, so let them know you know.

  5. #5
    Senior Member alan's Avatar
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    I understand how you feel. I worry about my mother (and how I'll be able to handle things when I'm alone), and I feel guilty about her having to see me paralyzed and in pain. She didn't deserve this crap anymore than I did (same is true for all of us and our parents.) Just another of the joys of SCI.

    Alan

    There's a fungus among us, and I'm not lichen it!

  6. #6
    Dann,

    I think the best thing you can do for your parents and yourself is to work toward being independent.

    What don't you like about college?
    The assistance you need?
    Is it akward socially?

    Do you have any PCA's for your care?

    You're doing a great job Dann, hang in there.

  7. #7
    Dann,

    Hey, friend! I'm glad you put your thoughts and feelings here.... You know I am in your corner.....

    I am going to email you tomorrow night....it's simply too late tonite, and I have to be at work very early.....

    But know I care, and be proud of who you are....I am proud of you.

    Prayers and friendship,

    Teena

  8. #8
    best thing u can do for your parents is gain your independence, at c5/6 u can do most things.
    as for college, man enjoy it. its the easiest place in the world to meet women and get laid, weather your a gimp or not, take advantage of it.

  9. #9
    Senior Member TimN's Avatar
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    Originally posted by alan:

    I understand how you feel. I worry about my mother (and how I'll be able to handle things when I'm alone), and I feel guilty about her having to see me paralyzed and in pain. She didn't deserve this crap anymore than I did (same is true for all of us and our parents.) Just another of the joys of SCI.

    Alan

    There's a fungus among us, and I'm not lichen it!
    I agree 100% Alan! Dan, I can only add that every step we take is as monunmental if not moreso than when we truly were her/their baby. God can destroy me, but he can't take my mother's wings as she's already an angel in every sense of the word.
    Tim

  10. #10
    I think most of us feel in the way you feel now,I myself have thought that life could be better for my family if I weren't disabled,but making them feel disappointed with an attitude so poor wouldn't help because that would be like diminishing all what they have tried to help me and give me in order to have a better life,though I also wish they could be "free" for having less attachments to stay at home,but only hiring people for helping me would be good,the problem is money,anyway,what I have tried and always do is adapting myself to their lives and schedules and only when it's really needed I hire a helper.
    On the other hand,whenever I try to be more independent (in the sense of having someone who helps me),my mom feels ignored and she says "how can you trust an outsider"?,as we said on other thread,parents are always "watching all around" in order to see if we are fine and alive!

    www.wheelsforindependence.biz

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