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Thread: How has scoliosis defined your life?

  1. #1
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    How has scoliosis defined your life?

    This is a little off topic for the thread, but Lisa Nicole's post of her ten year anniversary and her song about her surgery lot me thinking about how my scoliosis has defined my life in many ways.

    At 8 years old, it made me different, made me "the girl in the back brace". It changed my relationships with other children, made me self-conscious and shy. It kept me from being picked for sports teams at recess, took ballet class off my schedule.

    At 12 it made me the ugly duckling when all the other girls looked like swans to me. It kept me out of intramural sports, even though I did want to participate.

    At 14 it sent me into a deep depression when I had to start high school, where I thought I would get a new beginning in a school where no one ever knew me in the brace. Instead my lumbar curve fell apart and I had to start high school back in the brace, and I retreated into a lonely emotional shell.

    At 15 when I was free of the brace for many hours of the day, my scoliosis made me seek out approval from the opposite sex at any cost, the results of which I probably don't have to explain.

    Throughout high school my rocky start kept me in a state of emotional isolation that left me nearly friendless and desperate to start over somewhere else.

    Because of my scoliosis I moved clear across the country when I graduated from high school, desperate again to get a new start somewhere where I wasn't "the girl in the back brace".

    And because of all the above, I never gained much self-confidence, always sought the approval of others (even to this day) over the enrichment of myself.

    Because of my scoliosis, I decided to remain childless, lest I should put some innocent child through the Hell I lived through. I couldn't live with that.

    And at 52, because of my scoliosis I live in pain, have to limit my physical activities at a time when I want to be 100% for my 3 year old granddaughter (step-granddaughter)...and still, after all these years, feel ugly most of the time. I don't really let people know it, though, and the shyness is long gone.

    I write this not to say "poor little me", because I have always felt that if only I had been stronger, a tougher personality, I would have dealt with all of it better. I feel that another child would have rolled with the punches and not taken the whole thing so seriously and personally. I feel that another child might well have remained confident and self assured. I look back at how I reacted then, how painfully shy I was, how self-conscious, and I think how much I wish I could go back to that little girl and kick her in the ass, and tell her to just jump into everything and forget about what people thought (and they probably never did near as much thinking or noticing as I thought they did at the time).

    Anyway, my scoliosis really has heavily influenced most of the major choices in my life, possibly all of them. I'd be interested to hear what others would say about this.
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

  2. #2
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    What I would say first is to thank you for typing that. These honest accounts are extremely valuable and important to me as a parent in making decisions involving bracing in particular and scoliosis in general for my twin daughters.

    Your experience is what my guess is would be for my daughters had they worn a brace to school or somehow had a choice about having surgery and we didn't opt for it.

    The surgery saved their lives, both physically and mentally. They look and feel normal. It is our great fortune that this can be fixed and kids can have a shot at a decent childhood/teenage years.

    Thank you.

    Sharon
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    Quote Originally Posted by Mojo's Mom View Post
    my scoliosis made me seek out approval from the opposite sex at any cost, the results of which I probably don't have to explain.
    SorryÖIím not buying that. Scoliosis does not MAKE someone become promiscuous. WE make our own choices throughout life.

  4. #4
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    It's understandable that having scoliosis from a very young age can leave a teenage girl with zero self-esteem, and that they may make poor choices simply through trying to feel that they're worth something to someone though.

    I think parents can do a huge amount to help kids with scoliosis maintain a sense of self-worth. I don't really need to advise anyone here about that though, because the parents who are here are the ones that are involved and care about how their kids cope with their scoliosis. Sadly I know that there are also plenty of kids out there whose parents are really not that bothered, and I've seen some of those kids struggle terribly without that essential parental support.

  5. #5
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    Please back off, Chris, that is NOT what I meant.

    I thought I made it clear that I hold myself responsible for the things I did in childhood. I do not blame my brace for behavior, however, I realize that for my personality, the brace and the way I felt in it had a profound affect on my life choices. If this has not been true for you, my hat's off to you. I was the child I was, and I was dealing with something very challenging.

    I wrote this because I was interested to hear how others felt their condition and its treatment had affected their lives and choices, not to have someone jump on me for my perceptions about my own life.

    I might add that I was not moping around through my childhood. I traveled the world with my family, ice skated in that brace, hiked in that brace, climbed pyramids in that brace, and did everything I could within the limitations it imposed. None of that changed the way it felt, for instance, to have little children stare and point at me, or to answer for the 100th time, "no, I didn't break my back, I have curvature of the spine".

    Chris, if you wore a brace for nine years and had a happy, fulfilling, childhood and teenagehood filled with only positive life choices, then like I said, my hat's off to you, and as I said, I believe another child would have handled things better than I did.
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

  6. #6
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    Quote Originally Posted by Mojo's Mom View Post
    Chris, if you wore a brace for nine years and had a happy, fulfilling, childhood and teenagehood filled with only positive life choices, then like I said, my hat's off to you, and as I said, I believe another child would have handled things better than I did.
    I think you nailed it here. Chris will correct me if I'm wrong but I don't recall her mentioning she ever wore a brace as a kid. There is a reason for everything. There is a reason I wouldn't subject my child to a daytime brace given the evidence case in hand to date. Life is short.

    It is impossible to walk in someone else's shoes.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    I do recognise a lot of what you experienced, Mojo's Mom. I was diagnosed as a six month old baby and wore plaster bodycasts and latterly Milwaukee braces too, up until I was ten years old. Then I had my first surgeries, which included several weeks of halo-tibial traction and more casts and a Boston-style brace for a year afterwards. I had more surgery at 18, and at 25, and last year at 33.

    As a child, my parents just left me to cope with it. Literally, at times - cast changes took 2 nights in hospital every 2 months, they'd take me there and then come back for me on the third day. I was badly bullied at school, left out of things, and beaten up and spat on, but I was told by my parents that this was my own fault for not fighting back. I had no resources to draw on to stand up for myself because I'd never been taught any, and I also had zero self-esteem. I risk sounding bitter here, and I'm honestly not. It is just how things were. There were a lot of not-nice things in my childhood, and also a lot of wonderful things.

    I wouldn't say that my life has been defined by having scoliosis, though obviously it's always been there and will have influenced how things have worked out.
    Last edited by tonibunny; 11-10-2010 at 04:29 PM.

  8. #8
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    No, I did not wear a brace, but my deformity was certainly a source of consternation for me throughout my life, especially as a young woman. However, it did not take over my life. There are a lot worse maladies, and I donít think there is one among us who hasnít had to deal with something at some point in our lives.

  9. #9
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    Mojo's Mom - I hear you loud and clear. I was diagnosed at 11. Things that are said to a young child, or in a young child's presence, about the child - can, IMO have some pretty serious consequences. I actually blocked this experience from my conscious memory for many years. Before my dad passed away last year, I had a long talk with him about when my condition was diagnosed - he filled me in, and some memory of those days has returned. Little "flash backs" here and there - what I found strange (after all these years), was the vivid recall of the "feelings" at age 11 vs the actual words which were said. I remember crying and feeling sorry for my body. And i remember my parents arguing about what should, or should not be done. And yes, I think such feelings and emotions can carry over into everyday life as time goes on.

    As it turned out - my parents opted out. So I was spared the brace of the time. What I was not spared was what I call the shadow-fear of what may come. To some extent, I still struggle with that, and guess I always will.

    Did i over compensate at times as a result of my scoliosis and my feelings/fear of it? I think so, and my family would certainly vouch for the fact that for many years I ran on the wild side and was rather defiant. While the condition was not passed down to my daughter, fear of it has been, and I think she choses to remain childless because of it.

    Anyway - I would also say this, those with scoliosis - regardless of treatment choices, seem to me to be among the strongest people I have known, with a keen sense of survival. And while we are all quite unique, there does seem a common thread of strength among us. Your thoughts truly touched my heart and I see you as having become a very strong and beautiful woman in spite of a condition that is arguably most challenging, physically, mentally, and spiritually.


  10. #10
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    I had my surgery at 16 and had to wear a plaster body cast for 9 months. The idiots I went to school with thought I had a baby because all I could get to fit over the cast were maternity clothes. They figured when I got the cast off after 9 months, it meant I had a baby because I was thin again. I had a couple of friends that stuck with me through it all. I got my satisfaction when I was asked by the worst of my tormentors to answer her questions, because she had to have surgery for scoliosis. I told her to think of all she said to me and that was my answer for her. She left town after her surgery so her friends wouldn't see her. I have never gone to my class reunions as I prefer to look forward not backwards. I also told them that I would never attend because of how they treated me.
    I have a great life now. I have 2 grown daughters (one had scoliosis surgery) and 2 grandkids. Most of all I have a great husband who takes me to all my appointments and helps me deal with my pain and limitations!
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  11. #11
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    Quote Originally Posted by CHRIS WBS View Post
    No, I did not wear a brace, but my deformity was certainly a source of consternation for me throughout my life, especially as a young woman. However, it did not take over my life. There are a lot worse maladies, and I donít think there is one among us who hasnít had to deal with something at some point in our lives.
    Oh, without question there are worse maladies. There is always someone, usually MANY someones, worse off that you. However, this kind of perspective is one that comes easiest to adults. To a pre-teen or teenager, the perspective is very different.

    My scoliosis has not taken over my life, in fact for most of the last 30 years I had completely put it out of my mind. And yet those early years, and the decisions I made then, set me on a path to where I am now, and it might have been very different without the scoliosis and its early treatment. In that respect, it has shaped my entire life.

    Actually, for many years I would have told you that wearing the brace (and Chris, I wonder if you know just what the early Milwaukee braces, circa 1960s, looked like, especially on a reed skinny girl) really didn't affect me that much. As a young adult, I used to tell people things much like what you have said about yourself, Chris, that many people have it worse, everybody has something, etc., etc., and yes, it sucked but it was no big deal.

    But in recent years I have finally realized just how significant an effect my scoliosis had. First when I began to go back to a spine specialist, when getting the first x-rays in 25 years suddenly put me back emotionally to age 14, when I lived in fear of the x-ray readings; and then when I finally got my doctor's notes from the early 1970s, and found the tears rolling down my face as I read from the past, that brought it home to me. It took me back to that time, to the feelings I had, the peer rejection, the taunts. Kids can be incredibly mean. Yes, everyone has to deal with something at some point in life. I personally saw almost no one in my youth who had to deal with anything like what I had. I'm not saying they weren't there somewhere, but they were not in my schools, not in my neighborhoods. And that's what counts, because those are the kids who are looking at how different you are and letting you know about it.

    I am blessed and lucky, but I went through some stuff, and it interests me to hear exactly how others lives have been impacted and changed by their scoliosis. Especially those who lived the worst of it in their early years of life. And thanks to those of you who have shared and not found fault, because you have been through Hell. If there are many worse Hells, the only Hell you know is the one you live yourself, and it is to a child that it is hardest to see out of it.
    Stephanie, age 56
    Diagnosed age 8
    Milwaukee brace 9 years, no further treatment, symptom free and clueless until my 40s that curves could progress.
    Thoracolumbar curve 39 degrees at age 17
    Now somewhere around 58 degrees thoracic, 70 degrees thoracolumbar
    Surgeon Dr. Michael S. O'Brien, Baylor's Southwest Scoliosis Center, Dallas TX
    Bilateral laminectomies at L3 to L4, L4 to L5 and L5 to S1 on April 4, 2012
    Foramenotomies L3 through S1 in August 2014

  12. #12
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    Quote Originally Posted by Mojo's Mom View Post
    Oh, without question there are worse maladies. There is always someone, usually MANY someones, worse off that you. However, this kind of perspective is one that comes easiest to adults. To a pre-teen or teenager, the perspective is very different.

    ...It took me back to that time, to the feelings I had, the peer rejection, the taunts. Kids can be incredibly mean. Yes, everyone has to deal with something at some point in life. I personally saw almost no one in my youth who had to deal with anything like what I had. I'm not saying they weren't there somewhere, but they were not in my schools, not in my neighborhoods. And that's what counts, because those are the kids who are looking at how different you are and letting you know about it.

    I am blessed and lucky, but I went through some stuff, and it interests me to hear exactly how others lives have been impacted and changed by their scoliosis. Especially those who lived the worst of it in their early years of life. And thanks to those of you who have shared and not found fault, because you have been through Hell. If there are many worse Hells, the only Hell you know is the one you live yourself, and it is to a child that it is hardest to see out of it.
    Stephanie, I feel that you have read my mind, if not lived my life as an adolescent and teenager.

    I try to forget my childhood from age 10 through high school. Wearing that Milwaukee brace in elementary school, right when I was beginning to have an interest in boys, was absolutely brutal. I was taunted and teased - even my best friend called me names. Names like Hunchy, Robot, and Freak were among the names I was called. I recall having being chased and grabbed from behind by the brace's bars and swung around while other kids laughed. Yes, kids can be incredibly mean, and no one came to my defense. No one else at my school had scoliosis or wore that brace. This was in the 1960's before there was school screening or any education about it. It was a terrible, awful time.

    Having lived through that and the subsequent deformity through my teen years (the brace just slowed the curve for a while) defined me for sure. I became withdrawn and shy, grew my hair long to hide my back, could never wear a swimsuit around my friends (I always had an excuse).

    Excuse me here, but I take great offense when someone says "there are worse maladies than scoliosis." Duh, no kidding! I believe the majority of people here on this forum are NOT comparing this affliction to cancer or some other horrible disease. We just know scoliosis...most of us had it early in our defining and sensitive growing years and it changed many of us.

    Thanks Stephanie for starting this thread. It's good therapy I think to read what others have gone through and know that I am not alone.
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

  13. #13
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    Thanks for starting this thread, Stephanie,

    "Telling your story" is a human longing. We all need to be heard. In reading your recounting, I don't sense any blame or self sorrow- just a quest to dive in and see who you were and who you are now, and surely that is influenced by a physical condition that set you apart from others.

    When I read the stories here, my immediate thought is one of relief at somehow escaping the brace, especially the huge contraptions of that time. No one noticed my condition, and the planets just lined up such that it slipped through the cracks. We had changed pediatricians and our new one was not concerned with posture checks. I remember my original pediatrician diligently watching us walk around the room and checking our backs- I didn't know what for. I've always had a "swayback" and he gave me instructions to lean up against a wall balancing a book on my head, and pressing the small of my back into the wall. Then I was to walk away from the wall and hold that posture. As the years went by, I was told to stand up straight and thought, "I can't", and I remember this feeling of exteme awkwardness and gawkiness, like all parts were ambulating in different directions.

    But no one noticed, so this was an inner oddness that I felt. So many of you clearly had extreme examples of shame and taunting, wearing a highly conspicuous brace, knowing you had a somewhat bizarre condition and no possible way of disguising it.

    My mother was always diligent about our medical ins and outs, so it's unusual that this big thing got past her. My parents divorced when I was five, and my mom remarried a widower with 2 boys. They were Italian and we- my sister, brother, and I were the blondish side of that Brady Bunch. Except it was the dark side Brady Bunch, and when I was 16, just a few months after a girlfriend remarked to me in a dance class that my back was "really, really weird", my mom packed the three youngest kids, of which I was the oldest, into a borrowed car and we went to live in another state. We left everything behind and did not tell anyone, our friends or my stepbrothers, or anyone. So my weird back was a minor lookover during a long, tumultuous era, and I neatly shelved the whole matter into the back recesses of my mind, only to have a look at it later, in my early 30's. To think back on this time brings up the whole rusty car out of the swamp, so it's taken me a long time to go back there too deeply.

    I struggle with the concept that this is no big deal, get on with it. And I have. And I will. It's very helpful to hear everyone speak and it is healing to speak and be heard.
    Amy
    58 yrs old, diagnosed at 31, never braced
    Measured T-64, L-65 in 2009
    Measured T-57, L-56 in 2010, different doc
    2 lumbar levels spondylolisthesis
    Exercising to correct

  14. #14
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    hey Steph
    low self esteem....overused as the phrase is...is ABSOLUTELY a reason kids make bad decisions in their lives, including promiscuity! i didnt have to become a licensed social worker to know that...it just gave me more experience dealing with it and trying to help others....

    i am not one to judge the choices people make in life...it is not about something causing or not causing a person to make bad decisions...it is all about compassion for what a child and adolescent has to cope with!

    i am so sorry you had to deal with all that crap kids threw at you when in school...you have all my sympathy...
    and you don't owe anyone an apology for wanting to write about your experiences!!

    i am glad you have better people in your life now!

    jess
    Last edited by jrnyc; 11-10-2010 at 11:27 PM.

  15. #15
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    Quote Originally Posted by jrnyc View Post
    i am not one to judge the choices people make in life...it is not about something causing or not causing a person to make bad decisions...it is all about compassion for what a child and adolescent has to cope with!
    It is very good to have a person of your expertise on the group, Jess.

    Only kindness matters. There is too little focus on decreasing suffering in the world.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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