i had to wear a thin t-shirt underneath so it wouldn't rub on my skin. i didn't have any long enough, so i remember my mom cut off the sleeves and neck of my dad's t-shirts. my clothes barely fit over the brace. the only thing that showed when i was dressed was the neck piece.
the first year, i had to wear this brace 23 hours a day. one hour off for bathing/swimming. i wasn't allowed to participate in any contact sports. so instead of gym class, i was sent to study hall.
the very first night was a terrible experience to try to sleep in that thing. i didn't know how to lie down on my bed without it choking me. my pillow didn't help. so eventually my mom put a board under my sheet and took the pillow away. this is pretty much how i slept for the next four years.
getting ready in the morning was different for sure. my mom had to help the first few times i needed to adjust the brace. eventually, i learned to do it by myself. i had to relearn how to sit on chairs and in cars and lie down without choking. my long hair kept getting caught in this screw on the back of the neck piece.
when i returned to school, i got many stares. a few kids would step aside and whisper. but mostly kids would just come up to me and ask me what happened to my neck. it got old real quick trying to explain that nothing happened to my neck. that i had scoliosis, a curvature of the spine.
and one day, i saw a girl with a back brace just like mine! i wasn't alone anymore. we quickly made friends. the degree of her curvature was much worse than mine. she was just wearing a brace for a couple of months until school was out, then she was going to have the surgery. when she returned in the fall, she was wearing a full torso cast from her neck to her hips. it was very difficult for her to move around. she was a very brave, strong young lady. i'll never forget her. but we lost touch after junior high.
for the next two years, the amount of time i had to wear the brace during the day weaned. and that last year, i just had to wear it while i slept. at 16, i was re-evaluated by Dr. Graham. my curvature was less than 5 degrees...what he called "cosmetically straight." my mother couldn't afford to take it to the next level, so that was that. i got to keep the brace as a consolation prize.
i kept that thing in my closet for another year. "the monster in my closet." i don't know why i held onto it. sentimental reasons? i didn't know what to do with it? i don't know. eventually, we ended up donating it to someplace for parts.
fast forward 34 years...
decreased disc space, bone spurs, decreased C curve in my cervical spine, decreased thoracic curve, and of course pain. it's that pain that is so chronic that you become numb to it after a while. you only realize it when it's not there. which isn't very often...or when it's so severe that you almost fall out of bed when you go to get up in the morning.
so i see a chiropractor in the hopes that he can at least keep the pain at bay. he told me that if i wasn't as active as i was, the progression of my disease would be much worse. so i'm thankful that i can still keep moving as i have been. there are days when i need to slow down...but i know if i stop, i will deteriorate faster.
so i manage the pain. like so many of my friends with chronic pain issues. we push forward because it's the only thing that keeps us going.
this is the spine of a 50 year old. this is my spine. and i'm grateful to God for all of it.