Hi there friends, Stef here! I’m super excited to share this guest blog post with you today. I have been fortunate enough to connect with Nicole Luongo, published poet, blogger, and dancer. She also happens to have Cerebral Palsy. She’s a pretty awesome human being. I discovered her because I’m always scouring the blogosphere for anything ballroom-related and I found her videos of her dancing. Reading her blog post I was touched and inspired. She’s overcome a lot and takes on life in a big way with gratitude, zest, and passion. We connected and decided to do guest blog posts for each other. I love getting the word out about inspiring ballroom dancers! So without further ado, I’ll let Nicole take it away:
“Disability is natural. We must stop believing that disabilities keep a person from doing something. Because that’s not true – having a disability doesn’t stop me from doing anything.”Benjamin Snow, director of the award-winning short film, Thumbs Down to Pity.
Throughout my life I can remember sitting on the sidelines watching other people dance. This happened at my prom, parties and weddings. Most of the time it was because I was alone or no one asked me to dance. Then there was the obvious: I have cerebral palsy (CP) cerebral palsy (CP), a physical disability on display 24/7. And, while I usually never let having CP stop me from doing anything, it stopped me from dancing. I was too self-conscious, too stiff, unsure of how I would move in my shoes, afraid I couldn’t keep up (and quite possibly ruining a line dance) or that I would fall.
Nine months ago (just shy of forty years old), I had Selective Dorsal Rhizotomy (SDR), the only surgical procedure that can permanently remove tightness caused by spastic diplegia, the most common type of cerebral palsy. My four month follow-up visit in St. Louis with Dr. T.S. Park went well. He was thrilled with my results! The tightness in my legs was completely gone, I walked much straighter (no more bent knees) with heel-toe motion (instead of striking the floor with my toes first), no longer leaning heavily to one side and both legs were even (they weren’t pre-SDR) – eliminating the need for ugly shoe orthotics. I was doing so well that I didn’t have to go to physical therapy anymore. WOW!
It’s important to understand that the surgery does not cure cerebral palsy. I still have the same challenges I had before: poor balance, range of motion issues, tight hamstrings, heel cords and hip flexors. The wonderful news is that my gait is dramatically different, I can walk up and down stairs without holding on (I would never attempt this before SDR) and I balance better on my right leg. I tried rock climbing for the first time. Wow, is that hard! What’s next? I want to learn how to ride a bike. I always thought (and was told, in one form or another) it was impossible. Contrary to popular belief, people with cerebral palsy who have not had SDR, can ride a two-wheel bike. My SDR journey is teaching me to stop believing in limits – those imposed by myself or others. All of us are capable of much more than we imagine.
About five months ago, I decided to go back to ballroom dancing. I started group dancing lessons about eight years ago. I loved it! Unfortunately, my instructor was not a nice person, so I stopped after about a year and a half. I was curious about what dancing would be like with my new legs. It’s the same, yet different because I move better. I’m not so concerned about losing my balance. My legs, due to the lack of tightness, can move more freely. I still have problems with balance and turning around. Dancing is so much fun! Here I am with my instructor, William, at A Step Above Ballroom Dance Studio.
First, I chose to dance the foxtrot in honor of Dr. Park who, in addition to being a world renowned neurosurgeon, is also a competitive ballroom dancer. The foxtrot is one of his favorite dances. It’s also good for my hip flexors. Since SDR, it’s much easier to step back with my left leg, an integral part of this ballroom dance. Second, I chose to dance the salsa, my favorite of all!
William exudes charisma and kindness. He’s the reason I signed up for lessons (with him, of course) at the studio. He never lets me sit out of ANY class regardless of whether or not I think I can do it. He believes in my ability. When we dance, William leads me around the dance floor just like he would any other partner. No kid gloves. Just laughter and a great smile. All I have to do is follow his lead, try not to mess up or step on his toes! Or hit him. I feel so bad when that happens! And, in a moment that I will remember forever, when I got frustrated because he would not take no for an answer, trying to teach me to do something my body cannot do, I stopped and said, “Do you know what I really want to do? I want to learn how to ride a two-wheel bike.” William’s jaw dropped and he looked at me in amazement, the thought of me not being able to ride a bike unfathomable. I told him I don’t have a bike or a teacher, yet. Without blinking, he offered to teach me how to ride a bike. I was stunned that this young man in his early 20’s would make such a generous offer to someone he hardly knows. I put the word out on Facebook. A friend donated a bike, I bought a helmet and look forward to starting lessons very soon.
One day, I did a search looking for ballroom dancers who have cerebral palsy. I sifted through page after page on Google and came across Stefanie’s blog. It became an instant favorite! Stefanie inspires me. She has dancing disabilities. Some are similar while others are very different from mine. She slays negative thoughts and weight issue demons with every choreographed dance step. She doesn’t give up! I love her engagingly honest posts baring it all – sharing the good, bad and ugly about her journey as the biggest girl in the ballroom. I admire Stefanie’s ability on the dance floor. I’d love to compete someday. I want to perform in the next showcase, however, I am letting my dancing disabilities talk me out of it! I get frustrated (inwardly for the most part) when I can’t do something, wishing I could do the moves correctly and perfectly. Sometimes, it pains me knowing that no matter how hard I try, I can’t do certain things. Balancing on one foot is impossible. Spins are challenging. I have to modify a lot. I don’t want to modify. I want to be able to do the moves justice – and do them just like everyone else. But, I’m not like everyone else. I dance with a disability which, in a strange twist of fate, levels the dancing floor – making me just like you.
If there’s one thing I’ve learned on my dancing journey, it’s that I’m not alone. Although sometimes it feels like I am the only person on the floor with limitations, it’s just not true. So, what’s your dancing disability? We all have limitations that can prevent us from dancing, or doing anything in life. Some we can see (balance issues, for example), others we cannot (negative thoughts telling us we can’t do it). It’s time we accept our dancing disabilities. Let’s share them and dance in spite of them! The floor is yours. Embrace it. Own it. Life is too short. If you get the chance to sit it out or dance – I hope you dance!
Nicole Luongo is the author of Naked Desires, a poignant book for everyone who is searching for love, delighting in love, or hoping to understand love. Her mission is to raise awareness for Selective Dorsal Rhizotomy (SDR). Nicole believes information about the surgery should be provided to every person living with cerebral palsy. Please help spread the word by sharing this blog post.
Connect with Nicole:
Blog – Bare Your Naked Truth