name is Jayme Rushing and I'm sixteen years old. I was diagnosed with bilateral
vocal cord paralysis at birth, and I had a tracheotomy inserted when I
was six months old. The doctors said I would never be able to speak, but
were they ever wrong about that. I figured out that if I plugged the trach
tube with my finger I could make a sound. I just began experimenting from
there, and eventually my mom taught me how to prounounce words and form
sentences. Seems like I learned to speak when I was two. Before then
I communicated with my mom by sign language. So I learned to compensate,
and now even the doctor can't believe how strong and clear my voice is.
Just goes to show that docs don't know everything.
Unfortunately, my vocal cords aren't the only things malfunctioning in my body. When I was seven years old, it became apparent that I was getting weaker and weaker. By the time I was nine, I was being tested for various muscle diseases. After a zillion tests, including a muscle biopsy, the only diagnosis they were able to come up with was something they called a "non-specific neuromuscular disease"...in other words, they don't have a clue what's going on. What that means for me is that I have to cope with not knowing what might happen in the future.
One of the toughest things for me is when people fail to realize how much I suffer. See, I look "normal" on the outside aside from my trach, which is very unobtrusive. It's frustrating when people don't understand why I run slower, or why I can't get up the stairs as well as they can. Elementary school was the worst when it came to whispering and teasing. Fortunately, as time progressed, the kids learned to accept me, and my trach became commonplace and "normal".
When I entered an alternative school that went from the 6-12th grades, I found that there were two kinds of people; those who accepted you and seemed not to notice your limitations, my friends, and those who judged by you by your outward appearances, my not so friends. I guess I was never truly "teased" during this time. The other kids would just as soon talk behind my back than say anything to my face, which was fine by me.
My friends are great, though. They became my friends not because they felt sorry for me, but because we enjoy the same things and have similar personalities. Even though I'm home schooled and in 11th grade now, I still keep in touch with most of them. Being home schooled is great. I get to work at my own pace, and when I'm feeling blah, I don't have to push myself to the limits. All in all, I have the best of both worlds.
Still, many times I feel very inadequate. My mom keeps me going, though; she's my best friend. Other things keep me going too, like books and the Internet. They help me to feel connected to the world. I've been making my own webpages, taking care of my many pets, and writing. All of that pretty much uses up all my time.
If I had just one thing to say to healthy kids about accepting those who are not so healthy, or "different", it would be this. That life is unpredictable, and that one day you, or the ones you love, may find yourselves in the same position as those you teased or judged.
All in all I'm thankful for the hand I've been dealt in life. It's made me a strong person...my own person. I guess you could say that I dance to the tune of my own drummer.
Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468
Last updated: November 14, 2004