Genelle Levy
January 09, 2019 5:08 pm
Genelle Levy/HelloGiggles, Mima Foto / EyeEm

I remember the day we found it. It was a Sunday, and my family and I were getting ready for church. My mom was fussing over us as she always did, fixing our hair and picking out our clothes. As she zipped up my dress, she froze. “What is this?” she asked while touching my back. My mom often examined the tiniest bruise on my body with extreme caution, so I didn’t recognize the fearful urgency in her voice until she called my dad over to take a second look. They had both noticed a round protrusion on the left side of my back, which was raised up slightly higher than my right side. I had no idea what they were talking about.

I was 12 when I was diagnosed with idiopathic scoliosis, a condition where the spine curves sideways, mimicking the shape of an S. Scientists haven’t discovered what causes scoliosis, but it primarily affects adolescent girls. It’s estimated that approximately two to three percent of the population (six to nine million people) in the U.S. have scoliosis.

But after my diagnosis, I was crippled by fear. My mind pictured the hospital fundraiser commercials I often saw on TV featuring sick children with breathing tubes and blood bags. Even though my condition was not fatal, I identified as a sick child. At 12 years old, I learned that my health could not be taken for granted, and for the rest of my life, my health would be discussed differently.

This was the first time I didn’t feel in control of my body.

I can’t remember when the pain began, but once it started, it was a near constant in my life. The pain tingled along my spine and stiffened my back muscles to the point of soreness. Still, I didn’t let the pain stop me. I hung out with my friends, competed in classical music competitions, and even learned to scuba dive. Most of the time, I endured the discomfort with a smile on my face, but I had my limitations.

I couldn’t walk for more than 20 minutes without having to sit down and take a break. I couldn’t lift anything heavier than five pounds without suffering silently. At the end of a school day, I’d often find myself splayed out on the floor with one of my parents massaging my back with their hands, ice packs, or massaging machines that “promised results” and were promoted on the Shopping Channel. When those options failed to provide relief, I saw an osteopath who gave me manual readjustments, massaging my tissue piece by piece so I could gain just a couple days of relief.

Despite my doctor’s best efforts, the scoliosis worsened.

My curve became more severe, and I was quite literally shrinking. At my eighth grade graduation I stood 5’3″. By the end of ninth grade, I was 5 ‘1″. It became a challenge to find clothes that wouldn’t emphasize my curve, making me look totally lopsided. My mom and I would spend hours in the mall searching for something that fit, or that at least wouldn’t make one side of my ribcage look bigger than the other.

Courtesy of Genelle Levy

As a teenage girl, you learn the value placed on physical appearance early on.

I wasn’t exempt from feeling this persistent pressure. I sang the negative tune of self-hate that becomes an anthem for many women. My stomach is too chubby. My cheeks have baby fat. My face isn’t alluring. These were all thoughts that spun in the wheel of my mind.

But when my body began failing me, I realized that how I felt about my body was linked to how I felt in my body. We often put a lot of emphasis on how our bodies look, and less emphasis on all the things our bodies can do. I had wasted so much time focusing on my “wish list” (flatter stomach, smaller waist, carved cheekbones) that I had neglected to be grateful for all the things my body could do pre-scoliosis: playing with my sister for hours in the backyard without experiencing fatigue, standing on my feet for endless shopping trips with my mom, running around for hours with lots of energy at Disney World.

I also had never stopped to think about how exercise could alleviate some of my discomfort. In fact, it is only in the last few months (nearly 14 years after my diagnosis) that I have started to reframe exercise as something I do to strengthen my muscles weakened by scoliosis—not something I do to maintain a certain number on the scale. I exercise so that my body can give me all the gifts it can offer, like the ability to be present for experiences with people I love.

When I turned 14, my spine was 65 degrees off-kilter. I needed to have reconstructive surgery to lower the risk of the curve getting worse and crushing my organs. The surgery was followed by six weeks of recovery, and I had to practice walking again while my body healed. I gripped my IV pole and inched forward one half baby step at a time. At first, I could only make it halfway down the hall. It was another few weeks before I could make it down a flight of stairs without assistance. Every step was a victory.

I had a newfound respect for my body and its ability to fight.

Most people don’t know my body’s story just by looking at it–but I know. So I try not to trash my body. When my mind returns to old habits of self-hatred, I recenter my focus on all the ways my body has changed and grown. I measure it against what it can do now, and what it couldn’t do before. It’s been 10 years since the surgery, and today marks 100+ days that I’ve been pain-free. Now I sit up straight with the confidence that my body is a part of my journey, and I refuse to belittle it.

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