How has scoliosis defined your life?

[Singer]

Thanks for this thread, Stephanie. Peoples' stories are fascinating. We are what we are, a combination of genetics, environment, and our own efforts at self-improvement -- and we all do the best we can with what we've been dealt. I don't feel that judgment should have any place in the human experience.

I feel extremely fortunate to have escaped the brace, even though my curve was significant in my teens. My parents chose to basically ignore my curvature, which, looking back, I'm grateful for, because I followed their lead and chose to ignore it too. Like most teens, I had plenty of psychological and emotional issues to deal with, but scoliosis wasn't one of them.

[jrnyc]

thanks, Sharon...

if more people believed in kindness, as you do, we wouldn't be seeing all the teen suicides that have been in the news lately...
it is so sad when a young person feels that is their only choice!

jess

[Pooka1]

The recent suicides of bullied kids, of homosexual kids, etc. are beyond heartbreaking. Far beyond. These are innocent children.

If a person's conscience isn't shocked by these suicides then that person's sense of decency has been hijacked by some dangerous dogma. An example of someone who just doesn't get it is Clint McCance who was forced to step down from a school board in Arkansas after openly calling for all gay kids to commit suicide. The suicides should be viewed as a wake up call to everyone that we are the village. We must do what we can to protect ALL children. We have to fight against ideas that do not have reducing suffering as their goal.

We as a society have to grow up, move on, and take residence in this, the 21st century if only for the sake of innocent gay kids, innocent sick kids who can benefit from embryonic stem cell research, innocent women who have a non-viable pregnancy, etc. etc. etc..

People are invited to believe anything they like. They are NOT invited to inflict those beliefs on innocent people. I am calling for a sense of common decency which is woefully lacking in modern discourse.

[Mojo's Mom]

Thanks to all of you who have opened up here. A lot of you had it worse than I did, too. I was teased, and ostracized, but not to the extent that some of you were.

lray, good point about how little known scoliosis was in the 60s and even 70s. People had never heard of it, and tended to assume you broke your back, and looking back on it I wish I'd just answered them, "yes," and left it alone. It would have been easier than trying to explain this "curvature of the spine" which no one seemed to understand. That the general population was so uninformed about scoliosis made you feel even more weird for having what you had. It still surprises me today when I tell people I have scoliosis and they actually know what I'm talking about.

Some people don't realize that modern braces, which I'm sure are still awful to wear, are much less obtrusive than the early Milwaukee brace. I don't have a good photo of me in the brace, I think not many were kept, because who wanted to look at that. But your body looked as if it were in a cage, and the best you could do was try to cover it up, but then you looked like you were wrapped in some kind of box.

I can remember clearly what it felt like to be 15, finally out of the brace at school and for a couple of hours extra during the day, and finally feeling like a boy might just notice me, might just maybe think I wasn't a freak. I remember that I wanted that more than anything else in life at the time. Considering how many "normal" teens get in the same mind set, it doesn't seem too hard to understand how I might have made some bad choices about sex in my teens. You don't know what it feels like to live with a brace if you haven't done it, and to expect pre-teens and teens to be able to weather the experience without significant storms is unrealistic in my opinion.
We all have to be responsible for our decisions, but we don't need to be blamed for them.

[Resilience]

Stephanie,

Thanks for starting this thread. I found it helpful to read other's experiences, so many of which rang true.

I wore a Milwaukee Brace for 3 yrs full time as a teen. I was stigmatized as the girl in the brace as well. I abruptly had to quit cheerleading and dance class so I spent a lot of time alone. My parents told me "it was my cross to bear," I think because they didn't know what to say. We didn't talk about it much, my mom cried about it and I tried to be strong for them. I had always been self conscious because I was tall, now I was even more so! I wanted to disappear. My self esteem plummeted as did my grades in school.

I also looked forward to leaving my neighborhood behind and felt a new freedom when I went to college and made new friends, people who did not know about my brace. I loved the fresh start! I also ended up across the country.

Recently my 8 year old daughter was diagnosed with Scoli. We both left the specialist's office in tears. Came home and cried for hours together. I apologized for passing this down to her, wanted her to understand that she inherited it from me. She was very forgiving, "I wouldn't want anyone else to be my mommy." She may not always feel so kind toward me, but for now it helps.

My daughter's diagnosis has brought up so many of my old feelings: PTSD my doctor said, as I had a total tearful meltdown in his office. I am working through those feelings now with a counselor and seperating my experience from our current journey. I realize that I have blocked out so much from that time in my life. My parents have both passed so I can not refer to them. I did get my records from Shriners which was insightful and different from what I had remembered. My counselor described my parent's lack of support as "unintentional emotional neglect."

I agree with the comment that the parents on this site are devoted to supporting their children through their Scoli in a different way. The world is different too.

I am actually learning so much from my daughter. She is very matter of fact with what is going on with her. She is not ashamed the way that I was. We talk about her fears and questions. As I discuss her situation with friends my history comes up and suddenly I am telling people about my past.

Again, thanks for starting this topic.