OUR STORY

BY BRIANNA BARBERIO

It was about five years ago, but I still remember the moment like it was yesterday. My sister and I had snuck into the same dressing room to make it easier for us to critique each other’s clothes before we committed to buying them. We tried on outfit after outfit; everything was completely normal, until she bent down to grab the next shirt. Her irregular shaped spine caught my eye as it jutted out of her bare back. One of her shoulders seemed higher than the other as well. “Angela, don’t move,” I said “I need to see something.” I traced a finger down her back, I could feel the odd curvature of her spine. I’ve heard of scoliosis before and I knew that it was not something that I should just dismiss.  When I told my mom what I discovered, I had no idea this would be the beginning of my twelve-year-old sister’s journey of suffering.

After that day, my sister was diagnosed with scoliosis and sentenced to three years in a back brace. Immediate fear spread throughout the family and everyone began examining themselves. As a result, my cousin Michael was also diagnosed. Michael is two years older than my sister and unfortunately, by the time he was properly diagnosed, his curve measured far worse than my sister’s.  Once the spine exceeds a 25 degree curve a back brace is required for treatment. Anything higher than 40 degrees raises the question of spinal surgery and Michael’s curve reached as high as 57 degrees. He is very lucky to have been able to avoid the surgery, but those years did not come without hardships. I witnessed the tears, stress, anxiety and bitterness these two suffered through as they grew up in a society that deemed them outcasts. It broke my heart to watch their struggle, but what hurt the most was the fact that there was nothing anyone could do.

A few years after Angela and Michael’s ordeal was behind them, I developed an interest in body painting. I experimented with my artwork on the backs of my family and friends using acrylic paint as a pass time. It was during the month of June that I found out that it was scoliosis awareness month. That was the first time I had ever heard of any awareness being given towards scoliosis. An idea came to me to paint a tree with a curved trunk on my sister’s back and post it on social media with the caption “A tree doesn’t need to be straight to stand tall.” I wanted to somehow do my part in spreading awareness about this condition since it was very personal to our family. Unfortunately, when I brought up the idea to my sister, she was less than enthusiastic to participate. No one except our immediate family knew Angela was diagnosed with scoliosis because that’s the way she wanted it. For years she tried her best to keep it a secret, especially in school, because that’s how awkward she felt. She would leave class early to go to the nurse’s office before gym to take off her brace so she wouldn’t have to change in front of people. My mom would pick her up from school so she wouldn’t have to walk home with her friends because maybe they would feel it and find out. I couldn’t blame her for feeling uncomfortable about announcing it randomly on social media so I respected her wishes and disappointingly scrapped the idea.

During my senior year of college, I had to choose a topic to raise awareness about for my thesis. This was the perfect opportunity for members of my family to tell their story. I recalled the idea I had about the painted tree and once again asked my sister if she would be comfortable with me using her as my model and telling her story. I explained to her that my thesis was about raising awareness for scoliosis and this was her opportunity to put those demons behind her and share her experience. Being older and wiser, she agreed that  if she can help even one person, then her struggle was one worth telling.  

The most important thing that I’ve learned after working on this exhibition for the last ten months, is that there is unquestionably not enough awareness about scoliosis. Most people, although they may have heard of scoliosis, have no idea of the severity of the condition. Scoliosis is idiopathic, meaning that doctors and researchers still have no idea what causes it. This is unacceptable.  In addition, the form of treatment, a heavy, hard, plastic brace, has remained stagnant for over 40 years with little sign of improvement or medical breakthroughs in the future. Scoliosis affects about 2-3% of the nation’s population. While that may seem like a small percentage, that is equivalent to about 7 million people. 7 million children from the ages 8-14 are diagnosed and subjected to 2-5 years of torture during the important developmental years of their lives. This can lead to depression and other forms of mental illness. Having had a personal experience with scoliosis, the fact that there seems to be little motivation to prevent this from happening, is terrifying. But scaring you is not my intent. Instead of finding fear in this, take this information to spread awareness to help the children of our future.  

The way in which I went about the visual narratives of my thesis was not only to attract, but also strike the viewer. I wanted to use my skills I’ve acquired over my four years at Adelphi to create a thesis that would be informative and shocking. My intent was to have my imagery come across as arresting in an elegant way to get someone to stop dead in their tracks and think, “I need to know more about this right now!” Yes, everyone is required to put forth a senior thesis before they graduate, however, this journey hasn’t just been about a thesis for me. Scoliosis has affected my entire family in such a huge way so awareness about this condition is important to all of us. I am extremely passionate about this cause and I hope my passion comes across in these pieces in order to inspire change. The photography, the painting, the facts and interviews were all executed by me and it’s truly fulfilling, as a graphic designer, to be able to create art in order to raise awareness about something I deeply care about.

 

THE FACTS

WITH DR. HARLEEN BAWA

For this project I had the pleasure of sitting down with Dr. Harleen Bawa, a certified Physical Therapist in Mineola, who specializes in the treatment of scoliosis. In this interview I ask about her thoughts on scoliosis awareness and extracted some of her knowledge on commonly asked questions.  

Q: When a patient is diagnosed with scoliosis the treatment is wearing a hard plastic back brace for 18-23 hours a day, which completely changes his or her lifestyle. What are your thoughts about this treatment?

A: The brace is just like any other medication. Not one thing works for everyone, however, it’s statistically shown to be the most effective form of treatment. The reason why the braces are hard and ridged is to prevent further curvation. Bracing helps with posture for the majority of the day while the patient is still growing. Nobody can keep perfect posture all day long by himself or herself. However, what most patients don’t know is that proper exercise helps to maintain good posture along with the brace. Helping a patient with scoliosis learn these techniques in order to get stronger is really what we aim to do here. 

Q: Tell me more about these exercise techniques. Why do they play such an important role in treatment?

A: These exercises not only help during treatment, but they can also help the patient from experiencing further pain later in life. The specific type of yoga therapy we do here is not just your typical yoga poses and exercises. It’s based on medical research. We practice two types of research-based methods: SEAS (Scientific Exercises Approach to Scoliosis) and PSSE (Physiotherapy Scoliosis-Specific Exercises), which includes the Schroth Method – a German and Barcelona method. These exercises were specifically designed in order to strengthen the muscles that keep the spine in place. Since scoliosis is a 3-dimentional deformity, meaning that it affects the whole body posture, doing these specific exercises allows for the body as a whole to become stronger and control the spine from curving even further. That’s why it’s very important for the patient to practice the exercises along with the brace. Wearing the brace is passive, meaning it’s doing the work for you and the muscles become dependent that way. When you add the exercises it keeps the muscles strong, actively improving their muscle memory and neuromuscular pathways in order to keep good posture once the brace is off. Yes, the brace is effective, but combining it with the exercises is the best, treatment-wise. 

Kecia Chin, Certified Alexander Technique Instructor at the practice, added: It’s actually quite dangerous for someone with scoliosis to do the same workouts as someone without. A person with scoliosis could, in fact, worsen their curve if they aren’t exercising safely. By learning and memorizing these exercises, the patient will be able to return to working out normally at the gym or attending regular yoga class. The reason being is that now the patient has in the back of their mind what’s harmful for their body and they know what they can and cannot do. It’s very important for them to be educated and that’s our goal here.

Q: Research has shown that scoliosis can be linked to depression and/or other mental illnesses due to pain and concerns over body image. What are your views on this topic?

A: Scoliosis does affect the emotional and social behavior of people suffering from it, very much so, but I cannot directly link it to depression. Depression is very broad; anybody can be depressed for different reasons. I can say that if scoliosis stops a person from doing something they love, it can, without a doubt lead to depression. 

Q: Doctors do not usually recommend therapy during the treatment process. Do you think that it is something that should start being pushed?

A: Only in the past 4-5 years has there been a rise in awareness about scoliosis and how it should be treated. That’s probably why doctors aren’t being informed to recommend therapy or physical therapy to their patients as a form of treatment. Something important that I warn patients about is that regular physical therapy can be harmful to those with scoliosis and that is something doctors should really be explaining to their patients. Before I decided to specialize in scoliosis, I was a regular physical therapist and due to the lack of information I was treating all of my patients the same way. For example, if a patient came in with a fractured pelvis I would have treated that the same as I would have the patient with scoliosis. It wasn’t my fault; the research simply wasn’t there for me to know better. It wasn’t until there was that slight spike in scoliosis research in the United States that I was able to attend courses and conferences where I learned that there are specific exercises for scoliosis patients. That’s when I realized something needed to be done and started my own practice.

Q: It’s nice to hear that there has been improvement. What are your opinions on the current state of scoliosis awareness and how it affects research? Can people with scoliosis be hopeful for a change in treatment and possibly a cure? 

A: Although there has been improvement, awareness is definitely still lacking right now. Yes, it is on the rise and getting better, but it’s still very far from where it should be. Not much research is done here in the United States. In fact, for the past 40-50 years the general guidelines for scoliosis treatment, as a whole, have not been updated at all. That’s unacceptable and strides must be made.

 

NOW LIVE WITH IT

WITH ANGELA BARBERIO & MICHAEL VALENTINO

I owe immense gratitude to the two inspirations responsible for this thesis, my sister, Angela Barberio and my cousin, Michael Valentino.  Assisting me with my thesis and reflecting back to a time in their lives that caused such pain to help raise awareness for scoliosis was beyond brave.  Your courage was a humbling experience. 

Angela Barberio

I was diagnosed with scoliosis when I was twelve years old about to enter 7th grade. When I found out I had scoliosis and had to immediately wear a hard and bulky back brace for everyday for 23 hours a day I was distraught. It did not take long for my normally positive attitude to become overpowered by anxiety and depression. 

I was told that if I did not agree to wearing a brace it was very likely that as I continued to grow my curve would become increasingly worse. If that became the case, spinal fusion surgery would be necessary to correct my spine. That surgery leaves you with scarring along the spine, a very long recovery period, and a possibility of paralysis. After hearing all of this information about a subject I had never given a second thought to previously, I knew right away my life was about to change.

I wore the brace for three years and those three years seemed like they would never end. It’s hard to describe it to someone who hasn’t gone through it. The doctors make me aware of the physical impacts of the brace so initially, I was convinced that the physical pain of sleeping, sweating, and eating with this contraption around me 24/7 would be the worst part. However, what I went through emotionally was far worse. 

I often wonder what about my life would be different at this point in time if I did not have scoliosis. It’s hard to say for sure but I definitely believe that my frequent anxiety started during the time I was wearing the brace. I always had trouble falling asleep because the thought of wearing the brace to school the next day made me feel sick with anxiety. It made it so difficult to focus on or even care about my schoolwork or relationships. Eventually I just considered the anxiousness a new part of my daily life. Even now, no longer wearing the brace, my anxiety is easily triggered and I believe that that anxiety has never fully left me even three years later.

I think if there was generally more awareness about scoliosis that would have put me more at ease about my diagnosis. I definitely would’ve been more open to sharing it with the people around me if I didn’t feel like it made me such an outsider. I didn’t even know that back braces for scoliosis existed, so the idea of talking about it to friends really made me nervous at the time. I was so concerned that people would look at me differently and treat me a certain way because of the brace. If I had felt that more people were educated about the condition and wouldn’t see it as such a foreign thing, that probably would have helped myself and other teens suffering from scoliosis have a much easier time. 

Even after all this I still say I am grateful for the experience because of what it taught me and the kind of person it allowed me to become. It was extremely humbling, to say the least, and I came out the other side stronger and more confident in myself. Now anything that comes my way seems much more achievable. Also, I think it opened my heart and mind to completely let go of judgment of other people, because anyone could be going through a personal battle you are completely unaware of like I was. I learned to never be ashamed of what makes you unique and that everyone has their own battles in life. I was lucky enough to be surrounded by good people who wanted to support me and that really allowed me to make it through those tough years. If I could go back and give my younger self advice I would tell her to not let your brace hold you back from experiencing things. Hang out with your friends or go to that party even if your brace is making you want to stay home, in the long run you will be happy you did. Stay strong and positive, you are capable of more than you know!

Michael Valentino

It was the summer going into 9th Grade, so I was about fourteen or fifteen when I was diagnosed. It was something my family and I would have never thought to look for if it wasn’t for Angela’s diagnosis. The curvature of my spine was so bad (in the 50’s) the orthopedic surgeon wanted to immediately start talking about surgery. Luckily, I went to a brace specialist and she said that if I put the brace on right away then we might be able to stop the curve from getting worse and I wouldn’t have to get the surgery. When I got my brace and first put it on, it was a soul crushing experience. I could not breathe, I could barely talk, I couldn’t eat, I couldn’t even swallow my spit; I felt like I couldn’t do anything anymore. It was like all of my organs were being crushed in and I could feel my heartbeat. 

Throughout the years what made wearing the brace so hard was knowing that there’s no guarantee to any of it. Everything is theoretical. I was told that I could wear the brace for three years, but that wouldn’t guarantee anything. I know this sounds horrible, but it would be one thing if I had a disease. Then I would be fighting to cure it, but working so hard as a young kid for something that’s never going to even get better is just really disheartening. I was doing something that at times felt like wasn’t even worth doing. When it came to the doctors, they just didn’t have answers for me and it would have been a lot more gratifying had they had more information to give me. It would have given me more hope that what I was suffering though wasn’t all for nothing. 

I’m sure someone can only imagine how it hurt having the brace on, but nobody really understands how it hurt mentally. You weren’t able to wear the clothes that you wanted to wear. I would have to wear the same three sweatshirts every week just to hide the brace and pants four times my size. Every time I’d go for a check-up and my degrees worsened by a point or two, my doctor would get mad and she would blame me. She would say things like, “You’re not doing everything you can!” which was horrible to hear because I was literally doing the best that I could. Then my mother would start crying and to see your mother cry just kills you. Looking back now I know that doctor was looking out for my best interest, but at the same time it was mentally damaging.

I definitely was depressed for a while. Having the brace is something that my friends would never make fun of and I was never bullied. How I looked on the outside wasn’t what bothered me, I was depressed because I was so uncomfortable all the time. Sometimes I would wake up in the middle of the night and my skin would just be raw because of how I moved in the night. I would wake up screaming and my parents would also wake up to help me take it off. It was like a real-life nightmare. It also really affected my social life. For months I just didn’t want to go out. I would be invited to parties and I did not want to go if I had to wear the brace. Nobody really realizes how it just completely changes your life. 

Having went through what I did, I feel like I can pretty much do anything now. I was literally suffocated and crushed for three years of my life, so it takes a lot for something to phase me. Something that I did once I started waning myself off the brace was get into musical theatre. After spending three years in the brace I felt like I had the courage to stand up in front of all these people and act and sing. That really helped me start to feel confident again.  Having scoliosis has taught me to see how everyone is going through his or her own struggle. I’ve never really understood that until after I went through what I did. In a way it’s helped me to be a better person.

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