In a not-so-subtle way, everything I have done, lived, dreamed and experienced in my life has led me to this very point, this blog that I am starting today. Sure, my moments of happiness and joy have led me to it. But it is rather my moments of sheer bitterness that have led me, no, driven me to this point. The point where I seek to change everything in my life starts now. There are many facts about me that I will probably share with you in the near or distant future. You will come to know about my heritage, my age, my family, and my interests. But right now, the most important thing to know about me is that I was born with spina bifida, a condition that causes a child to be born with an open spine.
Twenty-two years, 19 surgeries, and countless hospitalizations later, here I am. I am very blessed to be able to walk, despite the fact that spina bifida is the number one cause of paralysis in children in America. Even so, for many occasions, which means practically any time I am out of the house for a lengthy period of time, I use a manual wheelchair.
Yes, I am fully aware of just how strange it is to begin this cyber-relationship with this piece of information about me. You probably would have expected me to seize the opportunity of complete anonymity to first allow you to get to know me as a person, rather than as a statistic. Ironically, this is the very first time in my life that I am glad that I began with that crucial fact, because, as inane a detail that a handicap should be in any relationship, I am who I am because of everything that I have lived with spina bifida. Were you to meet me in the mall, or at my college campus, that is undoubtedly the very first thing you would notice about me. You wouldn’t stop to take note of my hair color first, or the tone of my voice, or even my smile. My purpose in beginning my blog with this detail is in order to challenge you, the reader, to get to know me as a person and to
come to see me for my assets as well as my flaws that do not relate to my ‘physical challenge,’ as I choose to refer to it. The second important fact you need to know about me now is that I am a writer. Not in the professional sense of the word, mind you, but in spirit, heart and soul. A senior in college, I am majoring in Interdisciplinary Studies at the University of Central Florida, and I hope to become a journalist. But I have been a writer for much longer than that.
At the age of ten, I began writing letters to celebrities, both local and globally known, as well as to politicians and public officials, in the hopes of recruiting a person who would be willing to become the national spokesperson for people with spina bifida, kind of like Jerry Lewis has been for the Muscular Dystrophy Association for more than forty years. That is a big request, and I am aware of that. I am also aware that spina bifida has affected by bladder control, my bowel control, and, at times, my self-esteem. Most people aren’t.
The fact of the matter is that awareness is the key to informing people about the effects of spina bifida, and is also the key to securing funds and other means for research and quality-of-life programs for those of us affected by this condition. People have already heard of the March of Dimes. Women who are pregnant know they should take folic acid in order to help prevent neural tube defects in their babies. But for those of us born before this groundbreaking discovery was made, it was too little, too late.
Now, my question to you is, will you be the hero that will spread my message, that will get my voice out there, to be heard over millions of others? I am not asking this because it is what I believe society owes me. You owe me nothing. But think about it: you get to log out of this Web site, and shut off your computer. You may forget you even heard the term “spina bifida.” But to me, this blog is an escape from what I deal with every day. When I turn off my computer, I go back to living my life with spina bifida. So, I propose this: for one year, I will try to write at least one letter or E-mail to someone who is a high-profile public figure. It can be a senator, or a singer, an actress or an acrobat (okay, it probably won’t be an acrobat!). The point is that these people will all have something in common: more people know about their existence than they know about mine.
The goal will be that, by the end of the year, I will have recruited someone to adopt the role of spokesperson for spina bifida on at least a national level. The task I am entrusting you with is to tell your friends, relatives, neighbors, clergymen, grocers, therapists, teachers,tarot card readers, etc. about this blog. Give them the link. You will be creating a chain of connections for me that may someday lead to my hero. Now that I come to think of it, that will make you one, too.
Hugs, Laura 😉