***Nicole Luongo is sharing her dream changing moment this week and I am so honored to share her story with you. With this being National Cerebral Palsy Awareness Day, this post is coming to you a day early and once you read Nicole’s story you will understand why. To tell you she is determined would be a gross understatement. She is magnificent in so many ways and I am so happy she is a part of the Dream Changer series. Nicole is such an inspiration to us all and I hope you enjoy her beautiful words as much as I did.***
I came into this world the size of a baby chicken! I was born two and a half months premature, weighing less than three pounds. My mom noticed that I could not rest my feet flat of the floor. Lacking balance, I rarely took a step without holding onto something. Nearly two years passed. I still wasn’t walking on my own. A neurological evaluation revealed I had spastic diplegia, the most common type of cerebral palsy (CP).
I could not do the one thing I wanted most: walk. At three years old, I slipped my hands through shoes – belonging to my parents or ten older siblings – and crawled throughout the house on my hands and knees. I did not give up. I paved my own path. This taught me an important lesson that shaped the rest of my life: anything is possible with determination and perseverance. In January 1978, an orthopedic surgeon lengthened my Achilles tendons. After walking in other people’s shoes for the first years of my life, I finally learned to walk on my own two feet.
As an adult, I began to experience problems associated with CP. I tired easily when walking. My back hurt if I walked too much. I could not step up curbs with my right leg – something I never had difficulty doing until age 35. This continued to be a such a problem that I asked my orthopedist for a cane. I couldn’t bring myself to use it. Instead, I avoided curbs and got a handicapped license plate. In October 2012, I received news that would change my life: I was a candidate for selective dorsal rhizotomy (SDR), the only surgical procedure that can permanently remove spasticity (abnormal muscle stiffness) caused by cerebral palsy.
My dream changing moment occurred on March 29, 2013. At nearly forty years old, I had SDR on March 29, 2013, with Dr. T.S. Park, the world-renowned neurosurgeon who is acclaimed for refining the procedure. Dr. Park predicted SDR would allow me to move with greater ease, walk with less effort and ride a two-wheel bike, the number one goal on my post-SDR bucket list! My four-month followup went well. The spasticity in my legs was gone, I walked much smoother and straighter, with heel-toe motion, no longer leaning to one side, and both legs were even (they weren’t before surgery), eliminating the need for ugly orthotics.
It’s been nearly a year since I had SDR surgery. The journey has truly been amazing! My passion for the surgery gave me a purpose. I am an advocate for people with cerebral palsy. I raise awareness about SDR on my blog and social media. Thanks to SDR, my gait has improved so much that it’s hard to tell I have CP. I can walk up and down stairs without holding on – something I would never attempt before SDR. I tried rock climbing for the first time. I went back to ballroom dancing. On my 41st birthday, I will attend an iCan Bike camp 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.
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.
You can connect with Nicole via her blog titled Bare Your Naked Truth. You can also reach her on Facebook or Twitter.