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Worst. Year. Ever. My Struggle With Scoliosis
Hande Erkan
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When I was 11, I moved from Turkey to New York. After a month I was just starting to get used to my new school and make friends.

One day, I reached forward to put an apple onto my tray when a pain shot through my upper back below my shoulder, as if someone had stabbed me. It hurt a lot, but I tried to quietly calm myself. I was shy and I didn’t want anybody to pay attention to me.

I spent the afternoon massaging to my back. I knew something was wrong, but I assumed I’d just slept in the wrong position.

That night, the pain got worse. I asked my mom to massage my back. When she took off my shirt she said in alarm, “What is this?” She said that my back looked crooked. How had this happened?

A Scary Diagnosis

The next day I found out that I had scoliosis, a condition in which your spine curves into an ‘‘S’’ or ‘‘C’’ shape. Most people have a little curve, but people with scoliosis have more than a 10-degree curve. Severe scoliosis can even be life-threatening because the curved spine could affect your organs—for example, pushing on your lungs and making it hard to breathe.

There’s no good time to get a serious condition like scoliosis, but it happened at one of the most difficult points of my life. I was 11, trying to fit into a new country. I didn’t know the language well, which made it hard to make friends and keep up my grades. My parents were struggling financially after this big move, so I’d gone from living in a big house in Turkey to a one-room apartment. On top of all that, I’d just started my period.

A week later, we went to the hospital to get X-rays that would tell us how serious my scoliosis was. While waiting for the results, I tried to prepare myself for the possible outcomes: either I would have to wear a brace, or I would need surgery to fix the curve in my spine. Surgery seemed scary. But if I had to wear a brace, would people notice it? Would it be uncomfortable?

I found out that my spine had a 45-degree curve already and that I needed surgery. I started crying. I asked my mom why we’d come to New York. I was blaming New York for my scoliosis. I thought if I had stayed in Istanbul, I would not have this illness, I would not have my period, I would live in my beautiful house, have all my friends and family close by, and be a normal 11-year-old girl.

“You should feel lucky that you are here because imagine how much this surgery would have cost us in Turkey—we wouldn’t have been able to afford it,” my mom said.

As upset as I was, I knew she was right.

Trying to Be Brave

That evening my family went grocery shopping, but I wanted to stay alone at home. I went on Google and watched scoliosis surgery videos. I didn’t get scared. Watching the surgeries actually encouraged me to be brave. I decided that I would not show my family that I was scared, so they could also be brave and strong.

It took several months to schedule the surgery. During that time my spine’s curve increased from 45 to 65 degrees, which was bad for my health. I couldn’t participate in gym class, and whenever I went to dance class my back would hurt. I got tired easily.

Other people started noticing. Almost everyday someone asked me why I stood and walked with my left shoulder bent. It made me feel insecure. Sometimes I would say, “Mind your own business.” Other times I was more patient and I would explain scoliosis to them.

It felt uncomfortable to share this personal information all the time. I hated it when people reacted with pity. It made me feel weak when I was trying so hard to be strong and brave.

Surgery Time

Finally it was time for me to prepare for surgery. I met my surgeon, Dr. Lonner, who seemed to genuinely care about me and understand what I was going through, not only physically but psychologically. He told my parents, ‘‘Don’t worry, your daughter will be my daughter during those eight hours of surgery, and she will come out a healthy, beautiful young girl.” His honesty and confidence made me feel even braver and much more secure.

By the day of my surgery, my spine was 75 degrees curved. At the hospital, I tried to pretend like it was a normal morning. A lot of my family members were there with me. My aunt even came from Turkey to support me. While I waited for the hospital staff to call my name, I was laughing, smiling, and trying to ignore the fact that Dr. Lonner would soon be cutting into my back.

image by YC-Art Dept

But when they called my name and I started changing into a blue surgery gown and socks, it hit me, and I began to cry in front of my mom. Then I saw my dad crying. I realized that all of us had been holding in our tears to be ready for this day.

They lay me down on the gurney to take me to surgery. My mom was also dressed in a blue surgical gown so she could walk with me to the operating room. I was OK until I arrived in the operating room. It was huge. I saw the surgical tools and there were many doctors and helpers. I saw the bags of blood that my mom and dad donated in case something went wrong during surgery and I needed a transfusion.

I held my mom’s hand and started crying loudly. It was so scary. I’ll never forget how, after they gave me the shot of anesthesia, my mom told me “I love you” with tears in her eyes. After that, everything went black.

The surgery went well. On the second day, I was allowed to get up and walk, which sounds so easy but it was like a new experience. When I stood up I felt the weight of the 17 pieces of metal that the doctors had put on my spine to keep it straight. It was worse when they asked me to walk.

Totally Dependent

I had physical therapy for two days to help me practice walking, climbing steps, lying down, and other everyday activities. All four days I spent in the hospital, my entire family was there to support me.

For the next three months, I depended on my mom for everything. She had to lay me down on my bed and help me shift from one side to the other. She’d pull me up and take me to the bathroom. She had to wash me since I wasn’t even able to raise my arms. Bathing was complicated; I had to wear a garbage bag to keep my surgery wound clean and dry while it healed.

I was isolated. I couldn’t go outside because what if somebody accidentally pushed me? Plus, I was tired most of the time. That summer my friends would go to the beach and I felt sad and lonely.

I was also preoccupied about illness, which I guess was a psychological effect of scoliosis. One day I found a pimple on my lip and I searched on Google about it and decided I might have a lip cancer. “Let’s go to the doctor to make sure, Dad,” I pleaded. My mom was having back pain from pulling me up, and I started searching Google for back diseases she might have.

I got tired of these negative thoughts. This wasn’t me; I was normally an optimistic girl. So one night I told my parents I need a therapist. Their first reaction was “Why?” But after I explained, they understood.

Therapy Eased My Fears

I was lucky: My middle school counselor found a good Turkish therapist in Manhattan. We connected because we shared a cultural background. This also allowed my mom to talk to the therapist since she didn’t speak English as well as she does now.

During my recovery, I was so desperate to dance again. Dancing is my passion; I’ve been doing it since I was small. When I dance, I find myself at peace. Not being able to dance made me feel that I couldn’t express my feelings.

Three months after surgery, I was able to raise my arms, take a shower by myself, and do daily life skills and movements. However, I wasn’t feeling ready to dance. I was afraid of getting hurt.

My therapist helped. When I told him I was afraid of getting hurt because I lose myself when I dance, he said, “So what? Life is all about falling and getting right back up and moving forward. What if you had a minor car accident? Does that mean you would never ever again drive a car?’’

With the help of therapy I started to dance again and feel less worried about getting another serious illness.

Making Good Out of Bad

I’m now a junior in high school and I feel strong in my body as well as my mind. I am thankful for being healthy. I don’t take my health for granted, and I try to take care of myself. I’ve also learned to have empathy and patience for people who suffer from illnesses and disabilities.

Scoliosis has helped me be prepared for the unexpected and given me the confidence to persevere no matter what happens. Now I believe in the saying “Everything has something good and bad in it.” Sometimes bad moments in life help us learn to stand on our feet to confront problems and be more ambitious about our goals and dreams. That’s where I find myself now.

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(NYC-2017-05-11)

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