How Dancing Helped Me Find Myself Again After Transverse Myelitis
Everyone has their strengths and weaknesses; parts of my body may be weak, but I certainly am strong. From dancing since I was just 3 years old and learning how to walk three times in my life, my legs have been through a lot of muscle training — and that’s an understatement! Who would have ever thought that I, a 15-year-old girl who was a quadriplegic when I was 8, would be able to dance again? The obvious answer here is no one, which makes sense. But I have never been one to doubt myself or my abilities.
Every day, countless news articles are shared about tons of things, but there has never been a story shared about someone like me. Ever since I started taking dance classes and grew a passion for ballet, I knew it was going to become a part of me that would stay special to me forever, and I was not ready to allow an illness to take that away from me.
“I was 8 years old and scared, and had no idea what was going on.”
Being an 8-year-old dancer, I could not wait to perform in my annual ballet recital. It was usual for me to flutter about the dance studio with my friends in excitement, as I was doing what I loved the most. But this dance class was different — I just wasn’t aware of that frightening fact yet.
It started with a headache, and not just any headache. It was excruciating, the worst pain I’d ever endured. Of course I was upset that I’d begun to feel unwell during such a fun ballet class, but it was clear that I needed to go home and rest. That is, until my arms fell limp at my sides, and I suddenly could not move them. It doesn’t seem possible that just a simple headache could turn into this, but it did. And it got even worse as time went on.
A mere 12 minutes later, I was at an urgent care facility, and by then I could not walk, either. I remember the way my mom screamed at the woman behind the desk in fright as tears streamed down my face, and I remember wondering what was happening to me while I was on a helicopter being flown to the hospital. My parents were forced to beg the ER doctor to run some type of tests, but he adamantly refused because he thought I was faking it, and I was sent home unable to walk or move my arms. Things only worsened by the next morning; I woke up a quadriplegic, now unable to move my legs as well, and I was destined to live in the hospital in the ICU and rehab center for two months in order to hopefully recover from what I later learned was a rare neurological disorder called transverse myelitis.
“The video was still playing, although I didn’t know why. It seemed as if the able-bodied dancers were mocking me.”
As expected, when one’s body is entirely immobile, there are not many feasible entertainment options. My therapists in the ICU taught me how to write with my feet once I regained some slight movement in my toes, and I learned how to paint with my mouth. These were both tasks that made me so proud, because I was actually doing things somewhat on my own for the first time in days. Things that seem so trivial to others became the most important to me; my entire family was ecstatic when I moved my big toe for the first time.
Luckily, there did come a time where I no longer needed to write with my feet or use my mouth to paint, because after five treatments of plasmapheresis (plasma exchange) and intensive physical and occupational therapy for five weeks, I regained the ability to walk, as well as partial use of my arms and right hand, though my left hand remained flaccid and paralyzed. From the moment I successfully stood on my tiptoes in therapy, I knew I would be able to dance again, and I could not wait to try.
At first, my dancing wasn’t where I wanted it to be due to how weak my body had become, despite the significant recovery I made. So I started out performing short dances in order to retrain my body and mind to understand ballet movements, and we saw myself making progress the more I practiced. I popped in the DVDs from dance company’s performances and performed the dances I knew by heart, which was every single one in about twenty or more different shows, and I found myself feeling more alive than I ever had when I danced before. It was a miracle that I could dance again.
As I taught myself to dance again just a few months after being paralyzed from the neck-down, I noticed there were certain dance moves — most of them, actually — where I had trouble doing the arms correctly. Because of this, I began to subconsciously adjust the arm movements so they were easier for me to do, and that’s what brought a genius idea to mind: I could choreograph my own dances with dance moves that are better suited for my body. In the beginning, I improvised to songs I liked, but my technique improved with every dance I choreographed.
“I kept wanting to go back on the stage and do it again since I had so much fun and felt so accomplished. It seemed that I had regained a lot of the confidence I knew I had years before when I performed onstage all the time.”
The first time I listened to “Falling Slowly,” I knew I wanted to choreograph a dance to it. I analyzed the lyrics and formed a story of a homeless girl who was looking for a family and transformed it into movements. When I first start choreographing a dance, I listen to the song closely and decide whether I’d like to use the instrumental version or the actual song; then, I improvise and choreograph each part piece by piece until I have the final product choreographed to perfection. I hadn’t performed onstage since March 2010, a month before I contracted transverse myelitis, so I was eager to get back on the stage again — and I had the perfect opportunity to do so in 2014.
That summer, when attending the transverse myelitis camp at the Center For Courageous Kids, I performed my dance to “Falling Slowly” onstage, in front of an audience. I had never performed a solo before, but I had certainly danced onstage, and from the moment I set foot on that stage, my heart was beating erratically, and a smile took over my face. At that moment, prancing and jumping around the stage, I was the happiest I’d been in a while — it felt wonderful, and I was positive that I wanted to do this again.
“Even the littlest things were now a challenge, one I didn’t understand.”
It should come as no surprise that I wasn’t happy 100 percent of the time, considering I had suddenly developed a life-altering illness and was forced to relearn how to do everything. I had lost independence at a time in my life when I should’ve been gaining independence, and it wasn’t easy. There were times where I would cry myself to sleep at night, wishing with my entire being that my life was different — that I could be “normal.” In the back of my mind, there was some part of me that still knew I had so much to live for, but it just took some time to find out what my purpose was.
In the meantime, though, my mind was dark. I would get up every day and go on with my life as I had to, but my mind was filled with thoughts that were much too ominous for a 10-year-old to materialize. During school, I’d sit at my desk and think about the easiest way to hurt myself with what little muscle I had, but I never went through with it; I wasn’t prepared to do so.
Immediately after I recovered from depression in 2014, I realized I wanted to help others. Messages are sent through all the dances I choreograph, and so I chose to communicate through the way I know best: ballet. “Therapy” by All Time Low became a favorite song of mine straight after I analyzed the lyrics because they were pertinent to my situation. The instrumental felt right for a dance, and I got to work choreographing something creative that would succeed in capturing people’s attention. Through this dance, I portrayed the emotions experienced by many with mental health disorders in order to break the stigma surrounding mental issues, because they are often misunderstood. My hope with “Therapy” was to help others understand mental health, because maybe it would be easier for people to seek help if they felt others understood them.
“I had learned quickly that life doesn’t always go the way I want it to, and that’s OK. I still plod on.”
Music had always been a big part of my life, but I found myself relying on it even more during those times where I was feeling depressed. One Direction quickly became my favorite band, and they were my escape when I wanted to cheer up or cry out my emotions to their songs. When the Make-A-Wish Foundation granted my Wish to meet the band in 2014, I was ecstatic; it seemed things were going to start looking up for me that year. And they did. Since my Wish was granted, I have seen 1D four more times, and Harry has recognized me at every show, talking to me from the stage, and even giving me his towel! Harry and the rest of One Direction’s kindness has motivated me to keep going and view life more positively rather than dwelling on the fact that I was chronically ill.
“With determination, it is possible to block out the negative things and enjoy the positive ones, despite the cons. Most importantly, it is possible to dance through everything pernicious.”
Because Harry Styles has done so much to make me happy since I met him, I wanted to thank him in some way; I had already written him a letter through Make-A-Wish, but that didn’t feel like enough. To me, it is amazing that his music and kind heart could help me through the most difficult times in my life; when I had a spinal fusion surgery last August, listening to 1D’s music and having my picture of me with them helped me stay positive, because Harry encouraged me to be brave.
When Harry released his new single, “Sign of the Times,” the lyrics he wrote related to my life and all the experiences I’d had with him — and I knew just what I wanted to do. I was able to record my dance I choreographed to his song in Chicago with specific, symbolic scenery. In order to relate to the lyrics, the dance begins inside in the dark, with me in a black dress to display the eerie, depressed feelings I had before I met Harry. However, as the dance goes on and the song continues, I step foot into the bright, sunny outdoors of the city wearing one of Harry’s jackets — and I am happy again.
“This was the first piece to the whole story — the beginning.”
As I previously mentioned, after becoming paralyzed, I found happiness in dancing and choreographing. In addition to this, I also found happiness in my newfound hobby of writing, which I picked up when I met Jen Starzec, another girl who has transverse myelitis. Shortly after meeting each other, we both made the spontaneous decision to combine our stories with TM and publish them into a book, and we were successful! In July 2013, “5k, Ballet, and a Spinal Cord Injury“ was published. Jen and I wanted to raise awareness for transverse myelitis by sharing our stories, but we also wanted to raise money for TM research, which is why one-third of the proceeds from the book go to the Transverse Myelitis Association (TMA).
“5k, Ballet, and a Spinal Cord Injury” ends during summer of 2012, but so much more has occurred since then that Jen and I wanted to write about! So, we started working on a sequel, and published “Determination” in 2016, which covers our lives from summer 2012 to summer 2014. Additionally, when I met One Direction I presented them with my book, which I truly do believe Harry Styles has read, as he was extremely enthusiastic and overall impressed. Likewise, I was able to meet Bethany Hamilton and give my book to her as well, which made me feel honored that people I admire enjoy my books. Giving 1D and Bethany my book was one of the best things about meeting them, because I had the opportunity to raise more awareness for TM and give my favorite celebrities one of my greatest accomplishments!
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