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Thread: growing up with SCI

  1. #1

    growing up with SCI

    I know there aren't many of us here, but I'd like to start a thread about what it is like growing up with SCI. For me, it was hard. REALLY hard. I know there are people who are raising a kid with SCI who will read this. Perhaps those of us who have lived it can help.

    First of all, I was 8 when I became a t4/5 para. Prior to my injury, I was a very shy kid and I didn't have many friends. After my accident, I was Miss Popular. Despite my popularity, I sat inside and cried while my friends ran around during recess. Sometimes I did go outside with them, but it was even harder to be out there hearing their screams of delight and laughter while they they got dizzy on the merry-go-round or played tag. My school purchased a spare wheelchair, and they forced me to race my classmates, even though I protested vehemently. Everyone seemed to think THEY knew what was best for me. In 6th grade, all the girls got to be a cheerleader for at least one basketball game. All the girls except me. When I entered the 7th grade, my popularity when down the toilet. Suddenly, no one liked me. I was just too different. My former friends ignored me or made fun of me. I went from being the most popular girl in school to NO friends. By the 10th grade, people started to take an interest in being my friend, but by then my self-esteem was nothing, and I couldn't even make eye contact with anyone.

    There's so much more, but these are my initial thoughts. I'm not complaining or whining. I'm just hoping that this information, and hopefully more from others, can help someone who is raising a kid with SCI. I think that today's society is different from when I grew up - like adults listen to kids more - but some things don't change. I also realize that some of what I went through was because of my personality. Looking back, I can think of two things that I think would have made a big difference in my life. First, I wish the adults in my life listened to what I needed and wanted, not what they thought I needed. Second, maybe something like a companion dog would have helped. I think a dog would have given me companionship, some confidence, and something for my peers to think was *cool* about me.

    Hope others have things to add.
    Shannon

  2. #2
    OH MY GOD Shannon what you went through is so similar to what I experienced.

    [This message was edited by seneca on Sep 07, 2002 at 12:28 AM.]

  3. #3
    Seneca and Beaker,

    What horrible times you both had. I feel so badly for both of you. I always assume when a child is SCInjured, they live in supportive, caring homes but I see that is not always true. And kids, teenagers, and even adults can be so cruel to others that are in any way different at all. That angers and saddens me so much. I know in our BC (Canada) schools now, kids are being taught to stick up for their rights against bullies, and not accept their behaviour and report it to adults in charge. I sure hope it works. Of course that won't help kids that are ignored or just unaccepted. People can be so cruel.

    It seems like you both have 'grown up' to be happy, caring adults and I wish the best for both of you. Life is not easy but sometimes, people make it so hard for others. I truly hope that your lives are now filled with happiness.

    Sincerely,
    Darlene

  4. #4
    Senior Member Erin81079's Avatar
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    wow!

    I know it took you guys a lot to write this, and thanks for doing it. It's nice (and sad at the same time) to hear that you guys aren't all smiles all the time. From some people on here we only here about how there is nothing to cope, what's there to deal with, some people with sci are lazy, etc. I didn't think that was the way that everyone felt that has dealt with this a long time, but that's the opinion that stuck out the most to me. Maybe because it bugged me so much. I just want everyone to know, that just because I am a newbie, doesn't mean that I don't know anything about this injury. I don't believe (it could happen) that after a year or 10 years that I am going to suddenly change my tune. I applaude you Seneca and Beaker for being upfront and honest, it helps others like you, paras, parents with a sci child, and I am sure AB people to understand what you are going through. I never thought for a minute that your lives were easier dealing with this because you've been injured so long. It's just easy to generalize when someone unknowingly only talks about how wondeful life is and they happen to have been injured young. I know that there are so many factors relating to how one copes with this injury, Not just when you got injured, gender, age,etc. Nor do I think for everyone that it has to do with how long you have been injured. I guess you could probably call me an old soul when it comes to this injury, but I'm lucky.
    People are different and how they cope is always going to be different, that's one of the most important things I have learned in the past couple weeks posting on here. I just want to say that I congratulate you both on having the fighting spirits that you do, and good luck in everything you do.

  5. #5
    Senior Member mk99's Avatar
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    WOW

    Pretty heavy & gut wrenching. I apologize for my previous statements that people injured young don't know what they are missing & that in many ways they have it easier than someone injured later in life. Perhaps a few things are easier... but I see better now that it can be an incredibly brutal experience.

    thanks for the posts. I feel quite humbled.

  6. #6
    YES SENECA, I relate to what you said SO MUCH. You said it so well. I wish I were as articulate.

    Did you eat your lunch in the bathroom at school? That's what I did. I didn't want to sit alone in the cafeteria, so I sat in a bathroom stall to eat my lunch.

    I really hope that times have changed for SCI kids today. I think (I hope) adults listen to kids more. I may as well have been brain dead growing up. No one listened to me. I remember after I had rods in my back when I was 13, the hospital propped me on a stool, and took lots of photographs of me, and I was completely naked. That one haunts me to this very day. I did EVERYTHING I could to stop them from doing that, but they did it anyway. My own mother was with me, and even she didn't stop them.

    Karen's mom, I assume you have a daughter with SCI? How old is she now and how old was she when she was injured?

    Seneca, we were both injured in 1978, both at the age of 8. It's amazing how our lives were so similar. It's too bad that we didn't know each other then.

  7. #7

    Why bother?

    I really can understand you Beaker and seneca. As I was injured as a kid and, of course, went through hell too.

    I appologize for turning (if I am) this topic into a war and, if you wish (Beaker) I will delete it.

    Erin:
    I know it took you guys a lot to write this, and thanks for doing it. It's nice (and sad at the same time) to hear that you guys aren't all smiles all the time. From some people on here we only here about how there is nothing to cope, what's there to deal with, some people with sci are lazy, etc. I didn't think that was the way that everyone felt that has dealt with this a long time, but that's the opinion that stuck out the most to me. Maybe because it bugged me so much.
    It didn't only bug you in the past but, it still does and, I think it's very sad. The only way you seem to respect a person is by hearing the horrible times in their lifes but, have you bothered thinking of how they are now? I believe seneca has overcomed so many things till the point where she can see life in ALL it's means.

    I'm the one that posted that there is nothing to cope with. That does not mean that my life has been a bed of roses. It only means that SCI is the least of my problem but, at the same time, has most of the focus in my life. What's wrong with that?

    I just want everyone to know, that just because I am a newbie, doesn't mean that I don't know anything about this injury. I don't believe (it could happen) that after a year or 10 years that I am going to suddenly change my tune.
    You are NOT suddenly going to change your tune but HOPEFULLY little by little, you will overcome the anger you have towards those of us who have gone on and continued life with all it's up's and down's.

    I never thought for a minute that your lives were easier dealing with this because you've been injured so long.
    Yes you did, and you have stated it VERY clearly in at least 5 out of 5 posts.

    some people with sci are lazy, etc.
    If I'm not mistaking, that was one thing YOU stated about the 2 guys that "stared" at u in the gym.

    Erin: If when I woke up every morning, the only thing I had to worry about was how to get out of bed, I'd either be the bitteres fool around or the happiest dummie in life. I could also use all of that "wasted" time in making sure that a cure gets here yesterday instead of pointing the finger at those who try to make the best out of life.

    Good luck, move on and, PLEASE if I "bug" you so much, just ignore my posts. Thank you.


    ...and the soul afraid of dyin'... That never learns to live...

  8. #8
    Hey, if this turns into a war, more people will read it! I don't want you to delete your post Polette. If you don't mind though, could you write what your childhood was like? If this thread can in some way help just one kid with SCI, then I'm happy.

    Also, I wanted to add that my life today is really good. Well, not TODAY. My sweetie pie started kindergarten today! I can't wait to pick her up!

  9. #9
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    kids w/ sci

    I wanted to say that things haven't changed that much recently. My currently 16yo was injured just after her 14th birthday, and she was real 'popular' for a short time while everyone wanted to be-or have been her best friend. Then after she wasn't big news any longer, just her real friends kept coming around. A few people have out-right rejected her because although she is still a lovely girl she isn't 'perfect' anymore. A few people are more attracted to her as a friend because of the depth of spirit and soul that this experience has added to her personality.
    Oh, we just got a phone call. She auditioned into the Principal Oboe spot of the Sangamon Valley Youth Honors Symphony. - just a bit of a momma brag there.

    M.Elston Mother of a teen who no longer wishes to be identified by her injury. **rolling eyes**

  10. #10
    Erin and Karen'sMom, thank you.

    Beaker wrote:

    Did you eat your lunch in the bathroom at school? That's what I did. I didn't want to sit alone in the cafeteria, so I sat in a bathroom stall to eat my lunch.
    Shannon, in elementary school, I would sneak back into the classroom to eat my lunch until I was caught and forced to go to the cafeteria. In Junior High and High school, I'd swallow hard and try to pretend that I didn't care about having to eat alone, a little later my schedule was changed so I skipped lunch period all together.

    I remember after I had rods in my back when I was 13, the hospital propped me on a stool, and took lots of photographs of me, and I was completely naked. That one haunts me to this very day. I did EVERYTHING I could to stop them from doing that, but they did it anyway. My own mother was with me, and even she didn't stop them.
    Arrgghh, it's painful for me just to read that. I remember both my mom and the orthotists laughing at me because I asked if they could mold space for my boobs in the brace because my chest hurt so much from being smashed. Granted, I was thirteen so there wasn't much there but my request was legitimate, I didn't need the added humiliation. Because I was on an intermitten catheterization schedule, I had absolutely no say or controol over who saw that area or when. I hated that.

    Seneca, we were both injured in 1978, both at the age of 8. It's amazing how our lives were so similar. It's too bad that we didn't know each other then.
    I know. I didn't know there were others out there who's experiences mirrored my own so closely. It feels good to have them validated though.

    Mkowalski99 wrote:

    Pretty heavy & gut wrenching. I apologize for my previous statements that people injured young don't know what they are missing & that in many ways they have it easier than someone injured later in life. Perhaps a few things are easier... but I see better now that it can be an incredibly brutal experience.
    Thanks Mike for understanding.

    Polett wrote:

    I really can understand you Beaker and seneca. As I was injured as a kid and, of course, went through hell too.
    How old were you when you were injured, I'd like to hear your story too?

    I wrote in the other topic that there's no one person or thing that motivates me. It's my life so I have no choice but to live it, suicide just isn't an option for me. My life outside of my injury is the way I want it so I'm relatively content. Being happy shouldn't be miscontrued as having had it easy. How a person measures happiness while SCI'ed varies obviously, I'm not sure why some have an easier go at it than others. Could be inner strength, faith, defiance, love for life, a bunch of things, I really don't know why but I have never felt like throwing in the towel because of my disability although being mistreated has caused me to feel disheartened and defeated.

    [This message was edited by seneca on Sep 07, 2002 at 12:30 AM.]

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