Bent but not Broken: Lives Affected by Scoliosis
Photos by Beckley
I'm not even sure where to begin. Whether you came here because I said I took my top off (sorry to disappoint) or you didn't know what scoliosis was and wanted to learn more, welcome. If you have been following me since the beginning, you know this is not my first time to talk about scoliosis. (click here for another post) It's not something I talk about a lot, but something that shaped me (back brace pun intended) and my life. Whenever I wore a back brace (for about 2ish years), I felt alone and on an island. It was during middle school, which can be a cruel and unusual time...you're not surrounded by nice little elementary age kids anymore! I didn't want other people to feel alone in their scoliosis journey, so I decided to do a blog post on it! A couple months ago, I put messages out on Instastories and Facebook to see if I had any followers who 1) had scoliosis and 2) would want to be in a special project with me. These 4 ladies were up to it and one is even my mom;) Each of them have had their lives affected by scoliosis, but are proof that you can still do things like be a lifeguard (in a swimsuit all day!), a pilates instructor, or even sit at desk in normal clothes and lead a normal life like me...though I do sit on a exercise ball instead of a chair...it helps stretch my back;)
So, what is scoliosis and who does it affect? As per the Scoliosis Awareness Organization, Scoliosis is an abnormal curve of the spine that affects 2-3% of the population, which is an estimated 7 million people in the United States - bet you don't feel so alone with it, now! (meh) Most are diagnosed young - around 10-15 years of age, but it can affect young children and will continue to affect your adult life, even if treated well. It can affect all people- no race, gender, or background left out; however, it is 8 times more likely to occur and need advanced treatment in women. 1 out of every 6 children with scoliosis will progress to a state of curvature where advanced treatment is needed. THAT'S ME! What are the odds?! Actually a lot, considering my mom has it. My sister had a tiny curvature that they noticed but nothing to really do anything about, as it was noticed after puberty, meaning it was stable. Scoliosis can get worse with time and can cause anything from chronic back pain, to heart and lung function, and not to mention a hit to your self esteem.
So why am I writing about this now? I transitioned my blog to be more lifestyle than just fashion based back in March, for a lot of reasons...one of them being that being a "lifestyle" blogger allows me to open up more and be more real. I'll never be one of those strictly editorial-esque bloggers. Not that those are bad - I will just always have somewhat of a messy feed and sporadic thought. That's just me! Take it or leave it. Earlier this year I was brainstorming more personal content and trying to figure out a way to connect with others more. I started thinking about what I struggled with and scoliosis came to mind. June is actually National Scoliosis Awareness month, so it was just perfect timing. And here we are!
I found out I had scoliosis when I was going into the 6th grade. My mom always had my doctor check us (Dr. Richard Daniel if you need a pediatrician in DFW!) , as she has scoliosis and wanted my sister and I to find out early on. This would allow us to do everything possible and hopefully not have to have surgery. Shortly after that doctor's appointment pre-middle school, we trekked up to Scottish Rite- I say trekked, because I am from Garland and this was just the beginning of the era of Garmins. We still printed out directions from the computer and took them with us!! I remember helping my mom figure out how to get there each and every time. Dallas' roads have gotten better, but mannnn they were rough then. so many specific turns! Anyway, Scottish Rite started seeing me regularly to monitor my curve as I entered puberty (the time where you typically see the most movement). I was braced less than a year later.
I wore a Boston brace, which is a pretty standard one. The wonderful people of Scottish Rite took great care of me. They molded the brace to by body, gave me shirts to wear under it, and did countless x-rays. I never dreamed I would be asked that many times at 12 years old if I was pregnant. (hah!) They helped me when I got impetigo on the tighter braced side of my body and gave me shirts with woven silver to help combat infection. They let me go 8 hours of the day without it and truly touched my life. If you need a children's hospital in general, they are more than amazing.
I was lucky - or at least they say I was. I didn't feel so lucky having to wear a protruding piece of plastic that flattened my round behind and made me size up in clothing or throw up if I ate a little too much of something. My mom was always telling me "The goal is no surgery. The goal is no surgery." So I kept trucking along and strapping myself in night and day. I would take it off in the parking lot at school and immediately put it back on in the car, on the way home. I think the hardest thing (except being more socially awkward) was learning how to sleep in it. I cried and cried - my mom would often sleep with me or at least stay until I fell asleep. But yes, I was lucky. Lucky we caught it early and lucky I was able to go to Scottish Rite and lucky the brace worked/no surgery.
Back to awareness month...yeah they do school testings, but fewer than half of the states in the U.S. actually test, so don't rely on the school system. Get checked/have your kids checked at their yearly physical. It's kind of an odd test...bend over and touch your toes? LOL. One of the main reasons I wanted to do this post is to "catch the curve" early! They have now started screening as early as 5th grade, which is awesome!
Most importantly, if you do get diagnosed, don't get discouraged. See a doctor and do what they say. If you have to have surgery, don't fret. It has gotten a lot better than it used to be, even in the past couple of years. STAY ACTIVE. MOVE YOUR BODY! I can't tell you how much it helps that I do yoga and run. Movement helps your body in more ways than one. If you don't have time to get a sweat sesh in, try at least stretching once a day, if not more. When I worked retail, I had to constantly go in the back and just bend over and touch my knees and such. Your back affects a lot of other parts of the body, so treat it well. I also see a chiropractor every 4 weeks (Dr. Kevin Smith at Trinity Family Chiropractic), which helps me stay in line. Back when I got runners knee in 2015 and strained my abductor in 2016, it was because my hips were off...because of my back. GEEZE. Before, I had always treated chiropractic work as a response to something like a pull or a car accident, but it is actually a really great preventative. Back pain, especially on my curvature areas (neck,top left shoulder blade, and bottom right tail bone area, as I have a backwards S curve) is somewhat of a norm for me, but it is greatly helped with all of the above. I also love using Biofreeze and Panaway on the problem areas.
And most of all, know you're not alone. Love your body for what it is and not for what it isn't. Be open about your journey and let it impact your responses to others. Not that I was ever mean to someone with a physical ailment or issue, but having scoliosis has made me more sensitive to others. Going to Scottish Rite, I was reminded each time how lucky I was, even when I didn't feel like it. There were kids in there who had it way worse than me, to the point where I was mad at myself for ever feeling sorry for myself. Stick up for others always, especially if they have an issue like an impairment that that could easily be a target for others. Those hits often cut a little deeper than to most.
All in all, I didn't have to get surgery, so the goal was met. As my mom likes to say, my curve looks AMAZING. I'd have to say yeah, it does look good (it's easier to see I have a curve, if I am bending in any sort of direction) and my symptoms are mild, when treated regularly. Without regular chiropractor visits, I get frequent headaches/neck stiffness, tightness in my left shoulder, and my hips throb. I get the occasional bruise where most don't, when doing things like crunches or roll-overs in dance. Buuut that's all the norm for me - I've never known anything different. Do the most with what you have to work with!
I asked the girls if they wanted to say anything as a means of encouragement and support. Here's some of their responses below:
"Scoliosis awareness has grown so much since I was diagnosed back in the late '70s! If you've ever seen "13 Candles", Joan Cusack was me! I am so thankful for the advancements in the treatment of scoliosis and for the more positive images that are portrayed in the media today."
"My advice would be to stay active! Reformer Pilates and yoga are great, but anything that helps to strengthen the core will be great for the spine!"
To learn more, visit the National Scoliosis Foundation.
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