This is a true story. It all started in May, 1997, when the doctor noticed that my back wasn't straight. He told me that I'd need an operation to staighten the curve, the 'scoliosis'. I cried when he said that, since I'd never had surgery before. Well, it turned out that since I only weighed 34 pounds at the time, they needed to fatten me up before they could operate. (Before I go on, I guess I should explain why I was such a 'lightweight' at 11 years old. I was born with a disease called muscular dystrophy, and that had something to do with my weight.) It also has a lot to do with my muscles. They're much weaker than yours; so weak, in fact, that I'm not able to walk. What I *can* do is ride in my power wheelchair, but I'll tell you more about that later.
Here's what they did to give me extra Calories. The nurse put this long, skinny, hollow tube through my nose into my stomach so that I could get liquid feedings to help me gain weight. The tube tickled my nose. When it got down to my stomach, she needed to make sure that it was in the right place. She connected a syringe to the end of the tube in my nose and pulled out some of my stomach juices. Sometimes she checked by squirting some air into the tube instead. At the same time she was squirting, she would listen carefully with a stethoscope placed on my stomach. You could tell when the tube was in my stomach because it would sound like a fart without the smell. (Hope that didn't gross you out).
I had a hard time with the tube for awhile since I get pretty congested, but I was soon able to practice for the Florida Festival, a show that my friend Alexis and I were putting on with all of the neighborhood kids. It was hard for me to announce the acts because I had trouble talking. No wonder...everytime I took a breath I had to cough. When Alexis and I did funny impressions of some of our teachers, I noticed that I had a strange whistle in my right lung. The next day I had to go to the hospital, because it turned out that the whistle was a sign that I had a collapsed lung. I was there for six days!
you've ever been to the hospital, you know that it can be pretty
and not much fun if you're there a long time. I had some pretty good
though, like the time I had a cherry Italian ice right before the
came to give me a check up...when he looked in my throat, he thought
I had a Strep infection! There was a Child Life Department in this
so that was a lot of fun...they had all sorts of things for kids to
64, arts and crafts, computer games and arcade games. I have to
that the best thing of all was that the hospital sold *beanie babies*
the gift shop.
Luckily, I was home in time to announce the acts at the Florida Festival. The whole audience enjoyed the show; they especially clapped for the girl who could do the Hula-Hoop and the Macarena at the same time.
Something wonderful happened in September, and I've memorized the date and time...I met Mariah Carey! It was on September 22, 1997 at 8:00 A.M. What an incredible surprise...she is my one and only idol!!!
Something not so wonderful happened in November. I got a cold, so my surgery that had been scheduled to fix my scoliosis had to be postponed until the end of the month. The neurologist told me that it wouldn't be safe for me to go to school until I recovered from the surgery. I know this sounds odd, but I, Elizabeth Anne Sanza, was disappointed. When I finally did have the operation, I was the amazement of everyone...they were able to take me off the ventilator (a machine that does the breathing for you when you're too weak to do it for yourself) the very next day.
Another month, another hospital. In the beginning of December I was transferred to a hospital that wasn't like your typical hospital. I went there to gain my strength back, and when I was there, I ate meals in a cafeteria like at school, and in fact I even *went* to the hospital school every day (AND got *homework*). The rooms were more like real bedrooms, and each had a door to go outside. The best part was that I was ready to go home, right before Christmas.
Well, my time at home was awfully short! Two days after Christmas I developed another cold, so had to go to another hospital...a hospital with *no* recreation program. You can imagine how bored I was! I ended up in the ICU for a week, but something good came of it (besides my recovery!) I got to have this button-like gadget sewn in the skin outside my stomach so that I wouldn't have to put up with the feeding tube going down my nose. Now the liquid can go through the button, and it's SO much better!
The best news is that I haven't been in the hospital since last January!!!
Why don't you fly on over to read my story, My Wheelchair Can Fly. I'll bet you'll be able to figure out the parts that are true and the parts that are fiction....what do you think?
Thanks for visiting my page!
reading my poem? I call it Alone,
and I wrote it after attending a field trip with my eighth grade
class, and on the very next trip, I didn't sit alone. Now THAT'S
Now here's an update, a long time later (what do you think of my new pictures? How time does fly!!!). I graduated from high school in 2004, and started college, which, believe me, is rough. No more IEPs for me, and teachers don't seem to have to recognize my extra needs. One good thing is that I get to choose my aides:)
I want to date, but it's hard to go out with someone when someone else is with you ALL the time. In fact, I have a feeling that no one will want to date me because of my disability. For example, here I am, age 19, and no privacy--it sucks!
On a good note, I have done a lot of disability awareness speaking and teaching, and people say I have made a big difference in their lives because of my acceptance of all that I go through.
I'll write more soon. Later...Liz
And that I did...hope that you'll
click on over and visit my new page!
Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468
updated: September 23, 2006