I was born with congenital scoliosis. Since I've lived with it for all of my 25 years, I don't know what it's like to not have scoliosis, but I'll share with you what I think might be different from all you symmetrical people.
16 Months Old, I'm on the Right, my Twin Sister is on the Left
For the record, I am very open to talk about my health problems. The only reason it would be awkward to discuss them is if you made it awkward. For me, it’s like talking about the color of your hair, or your eyes. It just is who I am. So please don’t be weird about it, k? Thanks.
Scoliosis is a curvature of the spine. Some people develop it in their youth, and some (like me) are born with it. Either way, it is very likely to worsen as you grow unless treated with either surgery, a brace, or both. When I was 22 months old I had my spine fused in two places to prevent further crooked growth. The surgeon took out a rib and used it in the fusion. I had a full body cast for three months following the operation, and had a back brace until I was about 10 years old. At that point my doctor decided that it was as good as it would get. I’m still 24-27 degrees off, but it’s ok. I read once that people with less than a 30 degree curvature have no more chance of having back pain than anyone without scoliosis. I do not have regular back pain!
Cat Island, Apostle Islands National Park
The Good:
There is a good thing about having scoliosis! My left hip sticks out, and I can use it as a sort of shelf! It comes in handy when I need to carry children on my hip. It’s very easy to just let them sit there while I’m keeping busy. I worked building trails for several summers, and I found that it was very helpful while carrying wood and lumber down the trail. I just kept it on my hip, and less physical strength was required!
The Bad:
My torso is missing about 4-6 inches of height, but all my extremities and organs are the size of someone much taller than I am. I’m very short, but I’m not really petit or dainty. And the breathing. My lungs don’t have enough space to expand as much as they should. I can’t hold my breath as long as other people can, and I tire a little bit more than most.
Because of my fusion, I have found it to be physically impossible for me to do a backbend, which was a sad discovery. I discontinued my involvement in gymnastics because of it.
When I walk, my right arm hangs by my side, and my left arm rests on my left hip. My right shoulder blade sticks out, and my left hip sticks out. I have what’s known as a “double S curve.” When I sit down, I have a tendency to lean. Sometimes I find myself leaning over so much, it takes a conscious effort to sit up straight. It’s not usually uncomfortable, but for that reason I prefer to sit by an arm rest if I’m on a couch.
The Ugly:
It’s hard to find clothes that flatter my figure. I would wear t-shirts everyday if I could. When I find a shirt that fits me right, I wear it forever. This is not good for my wardrobe, because I’m still wearing shirts I had in high school! The waistband of pants and skirts don’t lay straight on me. Most people probably won’t notice, but the hemline of my skirts are always slanted because of it. I can't stand tucking my shirts in, because it looks horribly awkward on me. My waist--if you can call it that--is extremely high. It makes my legs look good, but the rest of me looks really really bad.
Hiking in Hawaii
I never minded having a back brace. I always thought it was a cool thing that made me unique. I was never teased for it. I went to a small country school when I was little, and in kindergarten I brought in an x-ray and showed the other kids my brace. I told them why I had it, and they never wondered anymore. Kids are so good at being inclusive. Although I didn't mind my brace, I am a little self-conscious of my crookedness. I envy people who are symmetrical. My self-confidence has improved throughout the years, though, and I no longer feel ugly or embarrassed about my odd shape. I know that most people don’t usually notice it. I know that I am how I am for a reason. I might not know the exact reason right now (maybe it’s to keep me humble? Ya know, because I would be too beautiful without this flaw!), but this is a condition that I can easily live with. I’m not seriously restricted from doing the things I want to do, and my back almost never hurts. Who could complain?! Ok, it would be easy to complain about this cosmetic issue, but what’s the use? It won’t change anything, and I’m not sure I would want to change anything. I like how I am just fine, thank you.
Oh man, I love you JB :)
ReplyDeleteYou are aMaZiNg! :)
ReplyDeleteHow Many back Surgeries for you Scoliosis have you had ?
ReplyDeleteWhen you were about 6 1/2 months old we had therapists come to our home to assess you. They told me your curvature was so severe that you would never walk. I told them not to tell me that, to tell you that. And then I pointed at you. You and your sister had pulled yourselves up to a stand with the coffee table and were walking around it. You weren't even able to sit up on your own yet. Their mouths dropped open.
ReplyDeleteYou walked!
I spent months working with you and physical therapy in our home. We had a huge ball I would put you on and hold you by the knees so you would balance yourself. You amazed your therapists when they would come for the home visits and finally you graduated their program! They were in awe. You were their only patient who graduated their program.
When asked as a child if you had pain in your back, I remember you replying that it was like a toothache. Always there, but you were used to it and didn't notice it. You were good at riding horse, but the brace would pinch your bottom on the saddle, so you showed dogs instead.
Everything you've done, you've done with gusto!
Oh, I forgot to say on my previous post. Your sister walked at 8 months and you walked at 8 1/2 months. Totally blew everyone away!
ReplyDeleteI forgot to mention something in this post: When I sit in a chair and lean against the back of it, only my right shoulder blade makes contact with the chair back, unless I sit half sideways. It used to really bother me, but I'm used to it now.
ReplyDelete