Scoliosis & Me or Bent Out of Shape
Friday, May 28, 2010 at 11:29AM | Becks Davis Last week in Who the Heck is this Becks Davis Chick? I gave Detroit Moxie readers a choice between two future posts. Bent out of Shape was the clear winner and here is what came of it. Read the other choice: Walking on Sunshine.
Deformed. That is how doctors describe me. That’s a powerful, crazy, horrible term. Me? I just think I’m crooked or bent out of shape. You see, I have severe scoliosis and when I was 18 my life expectancy was 40.
Scoliosis is a lateral curvature of the spine, sometimes in the form of a C, or as in my case, an S or double curve. About 3 in every 100 people have scoliosis and for most it isn’t a problem.
For me, it was a problem.
I went from being monitored for a slight curve to being confined in a Milwaukee Brace. Later it was chiropractor visits, surgery on my spine, and pain.
The Slight Curve
My pediatrician noticed a slight curve and said it should be monitored. He must have forgot about it after that because the next thing I knew my mom and I were heading down to Children’s Hospital to see an orthopedic.
I was 10. We were sitting in the room waiting for the results of my x-rays. My mom has what I call a jumpy stomach. If she’s nervous her tummy acts up. We were both nervous. My mom excused herself and went to the ladies room.
I sat in the room alone. The Doctor finally came in. I explained that my mom was in the bathroom. He was impatient and decided to tell a 10-year-old girl that she would have to wear a back brace for the next 8 years. Eight years is forever when you’re 10! He also mentioned I’d have to wear it 23 hours a day.
I tore out of the room, down the hallway, tears running down my face, and started beating on the bathroom door screaming for my mommy.
Then there was Beth.
Beth and I weren’t friends but we went to grade school together and she was put into a Milwaukee Brace a year before me. What do I remember about Beth? Scoliosis was her excuse for everything.
She didn’t participate in gym class because of her brace. She even used it is as an excuse that she couldn’t read her textbooks. She would get out of everything by saying, “I can’t.”
Beth taught me how NOT to live.
I refused to be defined by scoliosis or my stupid, cumbersome, hated-it-more-than-anything, Milwaukee Brace. I wasn’t going to stop living my life.
I caddied in my back brace. At first, the members at the golf club would ask if they could carry the bag for me. I would simply tell them that it was my job and I’d be fired if they carried their own bag. Girl caddies were rare enough back then so one in a back brace took getting used to. Yes, I carried doubles too.
I was an avid skier and skied with my back brace. I was a good skier but not very graceful. That means I didn’t always look good but I rarely fell down. I only mention this because getting up off the snow by myself in the brace was impossible.
In Junior High my friend Marybeth and I were out at Pine Knob and ventured towards the intermediate hill. The chairlift attendant wasn’t there and we hopped on. But I wasn’t all the way on. About 15 feet up, still inside the snow fence, I fell off.
No, falling off the chairlift wasn’t the bad part.
The bad part was that I couldn’t get up on my own. A line started forming for the chairlift and as everyone passed above me they would laugh at the beetle like creature, I was like a bug on its back that couldn’t right itself. I had to wait for Marybeth to ride all the way up the hill, ski down, and climb over the snow fence to help me up. Nope, no one else offered to help me.
I learned at a very young age that sometimes you just have to try harder and that it’s OK to be different. I learned compassion and that real friends will stick by you.
I’ve never used my back brace or scoliosis as an excuse. I never said, “I can’t.”
My scar from spinal fusion surgery.If I were given some sort of magic powers to change anything in my life, it wouldn’t be my scoliosis. I own that and it has made me who I am, not by its limitations, but by my own choices and determination.
Eventually, I stopped wearing the brace. My top curve rose to 62 degrees, surgery is recommended at 40 degrees. I also refused surgery for many years.
Yes, when I was 18 my life expectancy was 40. That is why I was so excited to turn 40 this year.
I did end up having surgery, a different procedure that wasn’t originally offered.
I made some stupid choices along the way but I’m proud and so grateful that my parents let me make those choices. As Frank Sinatra said, “I faced it all and I stood tall. And I did it my way.”
I have a scar from my surgery that goes from my neck to my ass. My scar is my tattoo. It’s my ink. It says, “don’t tell me what I can’t do.”
Obviously, I couldn’t include everything in one post. I’ll continue the story and fill in the missing pieces. If you have any questions about scoliosis, just ask.
Reader Comments (37)
Jean,
Great question! I had my surgery in May of 1988 and the picture was taken a few hours before I posted this. So, that scar is 22 years old.
I don't really remember how long it took to heal since I can't see it without a mirror. I had to keep it out of the sun for that 1st summer. I think it was all healed by the time I started my sophomore year of college that August. Also, parts of my back felt numb for for at least 6 months.
Let me know if you have any other questions.
Hi Becks,
Your story is both tragic and inspirational. Very moving in both regards. The scoliosis treatment experience is slowly evolving since the advent of genetic testing for scoliosis (Scoliscore) and a new understanding of how Early Stage Scoliosis Intevention (ESSI) can alter the natural course of the condition. The real breakthrough in thinking seems to be a fundemental shift in our understanding of scoliosis as primarily a neurological condition with it's primary affects on the spine. That has really opened up a whole new world of treatment possibilities. Jump on the ESSI side of our site http://www.treatingscoliosis.com/early-stage.html if your interested in seeing how our efforts will hopefully one day lead to a world where small curves don't become big ones. Godspeed.
Clayton,
I had no idea that they have genetic testing for scoliosis now. Wow. Thanks for sharing.
Hi Becks,
I'm happy to provide any informational assistance that I can.
I'm not sure how many of your readers are aware of the recent scientific developments and breakthroughs that have or are recently occurring in the field of scoliosis treatment. Prognostic testing/technology in the way of genetic testing and blood tests (soon) are now able to determine which early stage scoliosis patients are most likely to experience severe curve progression. This presents a new and unique opportunity for early stage scoliosis intervention rehab programs to reduce and eliminate many of the "at risk" smaller curve cases before they progress to much more complex and difficult large curvature cases. We have started a free online non-surgical scoliosis treatment forum for anyone whom is interested. http://www.fixscoliosis.com
hi ! i'm 19 years old and french. My doctors told me this year that i had scoliosis. I'm so sad, angr. Sometimes i feel like a monster. But your article make me believe that we can life properly even with this disease and this weakness can be a strenght. I'm not strong enough to accept me like that and i'm afraid to see my scoliosis increase but your article is such an inspiration.
Thank you a lot
Lilibee,
Thanks for reaching out. I understand your anger and sadness—I've been there. I wrote this post to show others with scoliosis and—in the case of younger kids—their parents, that it's not a death sentence. You can still live a vibrant, active and happy life.
Sometimes, it's all in your perspective. Use it as a strength and don't make excuses.
All the best,
Becks
Brilliant... At last I understand the connections between my neck pain headaches and chronic sinus issues! I be been feeling so debilitated recently. I'll definitely go see a chiropractor now.
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