I am Naiza Oclares. I live a simple life in the sun-kissed city of Manila, eating fish, vegetables, rice and whatever my mom fixes me. I enjoy life as it comes, but some days are better than others. The Internet has given me a renewed sense of freedom I never thought possible, especially for someone like me, bound by a genetic bone disorder which keeps me from going far, even in my own country, even down the road.
I grew up a normal kid. When my bones stopped growing, I didn’t understand. I was devastated like anyone hit with a sudden disability. I wasn’t normal anymore. Mother took me from doctor to doctor but the medical world refused me treatment. They didn’t understand me either. People in my country get treatment for simple issues pretty easily, but diseases like mine make finding proper medical care more difficult.
My bone disorder is called “Idiopathic Carpotarsal Osteolysis” or “Idiopathic Multicentric Osteolysis” in which the bones begin a destructive resorption. My arms stopped growing and my feet began to turn in like club feet. A doctor told us this was congenital, meaning it started as I was formed in my mother’s womb.
I became bedridden, which was very hard on my mother who took care of me. Three surgeries would be necessary to give me the ability to stand on my own. I wanted to continue pursuing my education but regular school was too hard that year. Surgery was risky. We didn’t know what the outcome would be but it was the only chance I had at a semi-normal life. Fortunately, it worked and I can walk now. Life is much better than when I was lying on my back wondering if I would ever get up.
“Mother took me from doctor to doctor but the medical world refused me treatment. They didn’t understand me either. People in my country get treatment for simple issues pretty easily but diseases like mine make finding proper medical care more difficult.”
My father left us to experience a world out of our reach, overseas somewhere. He never came back when I was diagnosed, nor while I was also undergoing my treatment. My care fell on my mother alone who was also taking care of my two younger sisters. I owe a lot to my mom.
Finally I realized that, sometimes, living with a disability can make your world stop to a certain pace in your life which you really don’t know how to pick up the pieces, but I also realized that this disability made me accept things I can and cannot do. I learned more about my disease when I started searching the Internet for answers after graduating high school in 2004. I was glad to finally know more about my body and what was happening inside.
I still have pain in my back and I get tired easily but I write to get out my feelings. I have much time on my hands. I’m not going anywhere. Writing articles online has given me a new sense of self, a way to earn money and feel good about what I can offer the world. It fulfills me.
I take hope in this Bible verse in 2 Corinthians 4:16: “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” Sometimes, I struggle with knowing that others are able-bodied. My body is not like others and it is hard. I feel like I am wasting away some days but I tell myself to have hope. I have a way to connect with the world and it gives me freedom.
Then, two years ago I met Grandma Barb on the Web, although not yet in person. She was a senior living in a senior home making a living by writing articles online. She became my support, my lifeline, my mentor. She told me about writing articles for websites so I started a career of my own as a writer. I never knew it was possible before but I have learned so much about writing and even about social networking. I can talk to people around the world from the small table I claim in the corner of our living room which holds my new computer.
I started my own blog to share my feelings instead of always writing content for others. In my blog, I write, “That is the question I’m always asking. Had I given my best shot in everything that I can do today? What I am grateful for? Why can’t I find the courage to talk to my father in regards to all my deepest concerns? Have I done enough for all the special people that surrounds me including my mom to be proud of me as her daughter? What is my worst that I badly needed to change? How to let go of the things beyond my control and be passive if there’s no choice? Am I still ready to take risk like I did before?
“Mostly, questions come up to me in various ways and occasions. Writing about it serves as my way of contemplating on . . . life . . . . For the meantime, let me leave it all behind this open page. Hopefully, someday I’ll get there to bridge the gap and wishing that this is all just nightmares in my wildest dreams. Look who’s talking?”
Read more about Naiza Oclares on her blog “Life in a so-called Strap of Steel” (http://unwrittenmemoirs.blogspot.com)
Thank you Naiza, for sharing your Story with us.
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© 2009 by Sarah Peppel and Story of My Life®