Scoliosis Doesn’t Make Me a Burden

My painful experience taught me to rely on my family’s love and support.

by Ayah Al-Masyabi

iStock, Drazen Zigic

The cold hand of my mom’s chiropractor tickled me as she followed my spine. Pointing at it, she told my mom that my spine was curving.

I had been experiencing worsening back pain for a few weeks. At first I hadn’t told anyone, afraid to be told that I was making it up to get attention. I had a history of exaggerating things, and because I didn’t have a visible injury, I couldn’t show people what was hurting. When I finally told my mom, she gave me Advil, but it didn’t always help.

My primary doctor later confirmed that my spine was curving and said that I might have scoliosis. We were immediately referred to Children’s Hospital Colorado, knowing time was of the essence with this diagnosis.

It was the first time I had heard that word, scoliosis, but on the car drive to the hospital a week later, my mom told me she had the same thing, though we would later find out that mine was much worse.

I knew my mom suffered from back pain, but hearing that she had scoliosis shocked me. It also meant that she understood what I was going through.

At the hospital, they took X-rays, and it felt like the moment of truth when the images popped up. I was shocked to see my back so curved. The doctor told us that I had an S curve, describing the sideways shape of my spine. They scheduled an appointment for six months in the future, noting that if my pain got worse we should come sooner.

Scoliosis Is Dreadful

My back pain quickly escalated from being bad to debilitating. At times it was so awful that it felt like my back was falling off.

I often spent hours on the couch in agony, trying to listen to a book to distract myself. The pain got so bad that I usually had to opt out of helping with chores. They weren’t my favorite thing to do, but not being able to share the load made me feel like a useless burden to my family.

Often, I didn’t admit to them how much pain I was in because I didn’t want them to feel badly for me. I felt they couldn’t do anything to help. 

Being only 10 years old, it was hard to know how to deal with it all. Scoliosis was dreadful, and it caused me to be more moody and sad. I was often fighting with my siblings, sometimes even my parents. The only positive I saw was no longer having to attend gym class. 

Though I sometimes felt alone and even hopeless, I also felt that my mom was the one person I could go to for support when I needed it, and that she empathized with my struggles in a way that no one else around me did.

One day as my back pain escalated, I avoided asking for help until it felt like I was being crushed. When I told my mom that I was in pain and didn’t know what to do, my anxiety eased as soon as I saw her compassionate smile. Once she gave me Advil and got a heating pad for my back, my pain eased too.

Knowing my mom had my back, pun unintended, was comforting. Even though I didn’t want to bug her, every time I asked her for help when my back was hurting, it got easier. 

The heating pad became one of my biggest coping mechanisms; I could be seen using it most times, during school, watching TV, etc. Yet my pain continued to get worse, and my mom and I were back at the hospital at the soonest available appointment, which turned out to be a few months later.

The Hospital Becomes an Unwanted Second Home

The second appointment was like the first. The nurse measured me and took me to get an X-ray. The gown was still uncomfortable. But when the doctor showed us the X-rays this time, the angles of the S curve were much more dramatic, especially the bottom one.

He told us that the curve was one-degree off from needing surgery and, if we wanted, we could try a night brace and physical therapy to see if it helped decrease the curve. When the doctor left the room I started crying. I didn’t want to have to deal with the pain anymore.

Before we left we scheduled more appointments, including physical therapy, and the hospital quickly became an unwanted second home.

After a few more long visits, I was handed a back brace covered with emojis. With the brace came many rules: I needed to wear special white shirts under it; the belts needed to be at a certain tightness; I couldn’t sleep on the left or right side; I needed to clean it every week; and if it started to hurt me we needed to come back. There would also be checkups every few months to see how my spine and brace were faring.

The specialist told us that wearing a brace could be very difficult, and even mentioned that other kids he treated had refused to wear it. I would need to sacrifice my comfort so that my spine could get better. As a 10-year-old, I internally rolled my eyes, thinking that those kids were crazy and that I would NEVER refuse to wear the brace.

Unable to Get Out of Bed Without Help

At first the brace made me feel special and even cool, but that changed quickly. I was still in severe pain and taking Advil every day, which didn’t always help.

The brace wasn’t supposed to help with pain, but to push my spine straight while I grew. In my eyes, it made everything worse.

The process of putting on the brace required me to lie down in my bed and have one of my sisters help me put it on. I would squeeze my body into it, almost like a worm, and then my sister would pull the belt to the line the specialist drew. I couldn’t get out of bed after I put it on, so if I wanted to get up to pee or get a snack, I couldn’t.

The brace was stiff and felt like it was made out of hard plastic. It was constantly pushing into my body on all sides, causing my muscles and bones to ache, making my body feel like it had no room to breathe. The shirts I wore under my brace were itchy and made me sweaty. I quickly started to dread the nighttime, knowing the fate I would face.

I would awake in a pool of itchy sweat with my bones aching, especially my ribs and hips. Unable to get out of bed on my own, I would be stuck trying to wake one of my sisters. One of them would groggily get out of bed and unstrap the belt to free me from my prison; then I’d take off the sweaty shirt and do the stretches and exercises the physical therapist had taught me.

Most of the time, having to rely on my sisters added to my feeling that I was a burden on them. But I think that it also helped us have a deeper connection and understanding. When they helped me with my brace, it made me feel like they could see my pain and overall made it feel a lot less invisible.

In a way, my brace helped us grow close, and helped me warm up to being more open with my family about my struggles with scoliosis.

In a way, my brace helped us grow closer, and helped me warm up to being more open with my family about my struggles with scoliosis. But I still couldn’t shake the idea that my pain made me a problem.

The California Trip

That winter break, my parents shared that we were taking a trip to California. I had only been wearing my brace for a few months, and this would be my first long trip since my diagnosis.

Even though I couldn’t wait to see the beaches, the drive from Colorado to California was 20 hours long, which would take about two days of sitting in the car. Because I wouldn’t be able to plug in my heating pad during the drive, I would be losing one of my two biggest weapons against my pain.

But I kept my concerns to myself, not wanting my pain to ruin the trip.

The night before we started our journey to California, my dad came back in the sleek, black van he had rented. My belly bubbled with anxiety. Would I have to be in pain the whole way there and back?

My mom told me to sit in one of the seats. After a few seconds, the cool leather that touched my arms started to become warmer. They had rented a car with heated seats, just for me. As the heat reached my back, the achiness in my spine lessened, and the pain disappeared.

My family valued me so much that they wanted to support me; that’s what made them family.

I took off the seatbelt and hugged my mom. It meant so much that my mom and dad had found a way to help me enjoy the trip, even though I had kept my worries to myself. I started to realize that there was nothing wrong with needing help. My family valued me so much that they wanted to support me; that’s what made them family.

Picturesque Perspective

A few days later in San Diego, we all loaded into the car. The rain was pouring, and the many trees swayed like seaweed in beach waves. My dad chose a coastal road on the GPS and we went for a seaside drive.

As we followed this road, the sad and disappointing gray skies, pouring rain, and violent waves became something more. Phones and books were down as all of our eyes were directed to the beauty that lay outside of our window. It was like a perfectly choreographed play, as the wind changed direction and all that was out there swayed and crashed to it.

By the time we arrived back, the song of the storm lulled most of my siblings to sleep, but I stayed awake, staring out my window and viewing the undeniable beauty in the elegant chaos.

This trip reminded me that, despite the pain and troubles in my life, there was so much to be enjoyed. This wasn’t the end of my brace ordeal– I’d have to wear a brace for the next three years, and there were many other painful moments. But even on bad days, I could be hopeful that there were happy memories to be made, because I had the unwavering support of my family.

Ayah Al-Masyabi is a 17-year-old junior living in Colorado. She tackles her creative endeavors through writing, visual art, and, more recently, audio. Human stories and the narratives around soccer often influence the pieces she crafts. Ayah is an avid Liverpool FC, US Soccer, and Colorado Rapids supporter who can be found curating her bookshelf, having fun with family and friends, or at @ayahalmart on Instagram.

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