Navigating The Curves Of Life With Scoliosis

woman's back
BeautyHealthMedicineSelf Improvement 10 Comments

When I tell people I have Scoliosis I’m surprised by two things. First, by how many people do not know what it is. Second, by the number of women I know who have some form of this condition. The best way I can think to describe Scoliosis is simply a curvature of the spine. Girls are at a much higher risk for developing this condition than boys. There is no definitive cause for Scoliosis. Studies have been done relating to many factors such as heredity, ethnicity, and age, but none have conclusively determined a cause.

My journey with Scoliosis began the day I went to the doctor following a bout with Lyme Disease at 12 years old. A routine physical exam exposed a small curvature in the bottom of my spine. My doctor advised us to consult an orthopedic surgeon who in turn suggested coming in every few months for x-rays to monitor the progress of the curve. Thus began the part of my adolescence I prefer to forget, to sweep under the rug and pretend it never happened.

young girl in scoliosis back braceAs my body grew, the curves in my back increased to the point where the only option to slow their progress was for me to wear a back brace. I refer to the back brace as a modern day straight jacket for teenage girls. If you do a Google image search for “scoliosis back brace” you will be confronted with a series of pictures that depict what look like medieval torture devices. The amazing thing is that, 20 years later, the treatment options for Scoliosis remain the same: back brace or surgery.

The brace that I wore was composed of hard plastic that covered my chest and went down past my hips. The icing on the cake was the three huge Velcro straps used to tighten the brace so the internal pressure pads could do their job, constricting motion and muscles that might cause the curves to grow. Finding clothes to cover the edges of the brace was a near impossibility and I cried many times in front of the mirror when figuring out what to wear.

Wearing this shell sixteen hours a day for two years was a living nightmare for an introverted, active teen who played a sport and loved being outdoors. Over the course of my treatment, all of the doctors I worked with were men. As puberty hit and my breasts grew, I was in constant pain from the chafing plastic. Appointments were made, humiliating measurements were taken where a man would stand, hand on chin, furrowed brow, trying to determine how to melt the plastic in such a way that would make room for my aching chest.

Sleeping at night also presented its own set of challenges. If I lay on my side, the pressure pads would dig into my body, leaving bruises. If I lay on my back, the top of the brace would dig into my neck. If I lay on my stomach, the front of the brace would constrict and pinch my skin. I wore cotton tees under the brace that were soaked with sweat every morning. I felt totally gross.

Eventually my curve progressed to 48 degrees, the point where my doctor recommended surgery that would fuse my spine using bone from my hips, along with a steel rod. I emphatically declined. My body stopped growing during the course of wearing the brace, so the curves would not get any worse. I feel incredibly blessed not to have a disfigured body. One of my hips is higher than the other, and if you look closely when I’m wearing a bathing suit, it’s kind of obvious that something weird is going on with my back. But there are many women who struggle with far more physical issues stemming from their Scoliosis.

Today I still have three small scars that were a result of the back brace; two on my back, and one on my stomach. The scars on my body are nothing compared to the emotional scars that Scoliosis left on me. Being a teenage girl is one of the hardest things ever. There is so much pressure to be popular, smart, and beautiful. Development of self-esteem is either encouraged or damaged during those fragile years, and being different isn’t something that is always looked on favorably.

frustrated young womanIt was impossible to feel pretty or cool when I was wearing that brace. I felt hollow and insecure. It’s horrifying to me that girls today still have to fasten the same Velcro straps I did twenty years ago.

When I was going through all of this, my parents were by my side doing the best they could to see me through the challenges. My mom took me to every doctor appointment while I cried and yelled and cursed at her on the way to their offices. There was so much anger inside of me, so much hurt and pain that I couldn’t convey for having to wear this device, for having to deal with unemotional doctors who had nothing to say to a scared teenage girl who just wanted to be normal.

I share my story in hopes that it will incite a deeper understanding for parents and loved ones and friends who are helping a teen through a similar situation. Encourage them. Remind them of their beauty. Shop with them for pretty clothes that will cover the ugly edges of the brace. Talk about the situation to gauge where they are emotionally. Do not remain silent and pretend the pain doesn’t exist. And don’t ever knock on their brace as a joke.

I now go to the chiropractor every two weeks for an adjustment and therapeutic massage, which has helped enormously when it comes to managing lower back and neck pain. Some weeks I go in and feel fine until my therapist touches a muscle in just the right way and I suddenly realize the muted pain I’ve been carrying around.

I have very few limitations as a result of my Scoliosis, but I am always aware it’s there. I fervently hope that someday a more effective, less tortuous treatment option will become available for young girls who find themselves where I was twenty years ago. Until that day comes, family and close friends who demonstrate compassionate kindness are the healing balm, along with the understanding that this too shall pass.

Leah LaRocco, WYSK Lifestyle Contributor About Leah LaRocco, WYSK Lifestyle Contributor

Women You Should Know Lifestyle Contributor Leah LaRocco is a Long Islander who now lives in Franklin, Tennessee and works in the music industry for The Recording Academy. Her greatest pleasures include BBC drama, good British tea, botanical gardens, Betsey Johnson dresses, and playing with her two cats, Maddox and Myrtle. You can read more about Leah’s adventures in life and perspectives on people, places, and things on her personal blog Edges Like Sea Glass.

  • Phyllis

    This is a beautiful, touching story that really makes you understand the difficulty of living with Scoliosis, and how important it is to have loving and supportive people around you to help you through the pain, both physical and emotional. Thank you, Leah, for sharing your struggle to make us aware that so many teenage girls still deal with this back brace correction therapy, and, twenty years later, the treatment is still the same. Keep on writing and sharing…you are helping others to understand and providing a much-needed voice.

  • Margaret

    Thanks so much for sharing. I could have writen this article – it describes my adolesence to a “T”. Every word. I’m 45, and I’ve never met anyone else who was treated for scoliosis. Reading your article brought back so many emotions. I pray that my daughter will not have to deal with it as well. Thank you again for your openness and eloquence.

  • emilykrm

    I wore a Milwaukee brace in the seventies, and it’s amazing to me that the causes of Scoliosis are still unknown and the treatment is still the same! Despite being braced I still have a 45 degree curve between my shoulder blades. My parents and I all sort of gave up after a few years when the doctor appts amounted to me standing there in my underwear with the brace makers and doctors all poking and prodding me, arguing about the best way to make another brace but never coming to an agreement. I never got the impression any of these men thought for a minute about the fact that a 14-year-old girl actually went out and wore the thing in her daily life. Thanks for sharing your story Leah.

  • alexandria

    I saw this first on Huffpost. Thank you. I almost never mention mine to anyone. They don’t get the near constant low-level physical pain. Again, thank you. I never would’ve thought to talk about it without you.

  • emilykrm

    I wore a Milwaukee brace in the seventies, and it’s amazing to me that the causes of Scoliosis are still unknown and the treatment is still the same! Despite being braced I still have a 45 degree curve between my shoulder blades. My parents and I all sort of gave up after a few years when the doctor appts amounted to me standing there in my underwear with the brace makers and doctors all poking and prodding me, arguing about the best way to make another brace but never coming to an agreement. I never got the impression any of these men thought for a minute about the fact that a 14-year-old girl actually went out and wore the thing in her daily life. Thanks for sharing your story Leah.

  • alexandria

    I saw this first on Huffpost. Thank you. I almost never mention mine to anyone. They don’t get the near constant low-level physical pain. Again, thank you. I never would’ve thought to talk about it without you.

  • Danielle

    Specific yoga poses and a new mindset can change your life..dont let this “condition” define you…

  • Leah LaRocco

    I was recently made aware of a company called Hope’s Closet that sells clothing for young women who wear back braces due to scoliosis. I think this is a wonderful idea, and the young lady who started the company has her own experience wearing a brace. Check out her story and the clothing at http://www.hopescloset.com/our-story/!

  • Rebecca MacLean

    I am lucky – I guess – to have been born in 1950 before braces (or surgery) were in fashion. I don’t think, in fact, that I heard the word “scoliosis” until I was about 50. Somewhere along the line, in my 30s, when I began to wear pants suits, I realized that one of my legs was shorter than the other, and that my pant legs had to be measured for shortening individually, but that was the first inkling I had that something was wrong , Of course, after the fact, I realized that my uneven-length legs was probably the reason I was such a “klutz” (running made me tired and I could not keep up with my peers) but I suppose that beat wearing a brace. After taking ballet classes and focusing on fitness I felt like less of a klutz and really never thought about the problem. Fast forward to age 60. I am now having fallout from my scoliosis. I went, in two years, from being five foot 6 to being five foot 2, which I was told happens to people with scoliosis. I spent a fortune getting clothes shortened. My ribcage is more or less sitting on my pelvis because my back has collapsed. But I am still glad I never had surgery.

  • Elizabeth Sunduzwayo

    Hi Leah, I have a 16 ;year old son who developed scoliosis from the age of 12. Over time it has progressed to the point where the doctor told us in December of 2015 that he needs surgery. However, meanwhile, he was prescribed to wear a hard brace just as you have narrated. The young man became sad, cries in silence because he is autistic and is not verbal. His teacher told us that he has changed drastically from the day he started putting on the brace. He is sad and hesitant to go to the toilet as it worries him because of the pain he has to enjoy to pull down his trousers, then worse more to sit. We eventually decided to let him go to school without it as we felt we are causing our son more distress. The only option left was for surgery. However this has left doctors battling with whether to do it or not because apart from autism and scoliosis, he has a heart condition which is complicated to operate. His heart specialist is not happy to let the other surgeon for scoliosis operate him. As a result, we are left with one option which is to pray for finances so that we can take him for some non surgical therapy. Is there anyone who knows which one is the best? Also, would anyone out there know any good means of raising money for the treatment as we have come across some of the places but they are beyond what we can afford. I am not working although I have Masters in Public Administration because I had to choose to look after my son full time. I do some unpaid charity work to keep myself busy and help others. It is my prayer that I someday get the help for my son to go for therapy that would reduce pain and discomfort. I know he suffers silently as he is non verbal and when ever I notice that he is sad, I give him some pain relief just incase he is going through pain. I keep myself being prayerful and positive that someday I will get help for my son to live a normal life. Thank you Leah for sharing your story and I feel much better because all that you said is very similar to my son’s experiences although he cannot tell his story for himself. Bless you. Elizabeth in UK

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