The youth-written stories in Represent give inspiration and information to teens in foster care while offering staff insight into those teens’ struggles.

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Facing Reality
My legs are weaker, but my spirit’s still strong
Tania Morales

When I was 13 and living in my native country, Argentina, I realized that I was walking slower than usual and my legs were getting weaker. My mom noticed that my spine wasn’t straight. She took me to different doctors, but they didn’t know why I had these problems. So she decided we should visit the rest of my family in New York and see an American doctor. (My father, brothers, and sister had moved here a few years earlier.)

I was thrilled about traveling to New York. And when we got there my sister gave us tours around the city. But I kept on holding my mom or sister’s hand to stay balanced. And one day after walking around the huge malls of Long Island, I was so tired and my legs hurt very much.

“What’s up with my legs now?” I asked myself. I thought of ugly answers like having some kind of cancer and dying, but I couldn’t imagine getting sick while I was in the “land of dreams.”

Still, I’d also come to New York to go to a doctor. Going to an American hospital was part of my adventure at first. But after about three weeks of seeing many doctors who kept asking for more blood tests, I got bored and frustrated. I wanted them to find the problem, fix it, and let me go.

Then one day I was sitting outside the doctor’s office waiting for my sister, while the doctors spoke to her and she translated it to my mom in Spanish. Through the door, I heard my sister and mom sobbing. When they came out they looked very sad, but they didn’t say anything.

I felt scared and worried, but I didn’t ask why they were crying because if it was bad news, I didn’t want to hear it. I was afraid that the truth would be too awful to bear.

Even when my mom and sister took me to physical therapy, I denied that I needed it. I’d tell them, “There is nothing wrong with me,” and cut off any conversation that came near the subject of me being sick.

All I knew was that the doctors diagnosed me with “Frederick’s ataxia.” My family didn’t tell me the details, maybe because they could tell I wasn’t ready to handle it. What they knew—and I didn’t yet—was that it’s a genetic disease that makes walking, speech, and control of the hands more and more difficult. There is no cure.

Sometimes I’d think about my life before I came to this country. I had a lot of friends. I’d have bike races with them or play video games with the guys (and I always beat them), or go to the park and just hang around. I loved dancing, and I’d tape music videos and learn all the steps.

But now my walking was getting worse very fast, and I had to hold onto someone everywhere I went because I needed the support. This scared me because I knew what it meant, but I wasn’t ready for it. I tried not to think about my sickness, and I was successful at distracting myself, visiting the Statue of Liberty, the Prospect Park Zoo, malls, movies, and restaurants.

Then after six months in the U.S., my brother-in-law brought home a wheelchair, my biggest fear. I was really shocked, and refused to sit in “that thing.” I promised to do exercises with my legs and work more on my walking because I just couldn’t accept that I had to use the wheelchair, that I wasn’t going to be able to go back to my country as I’d left it, walking.

But my family convinced me to use the wheelchair by telling me that if I worked more on my exercises, I wouldn’t have to use it. At home I just walked around holding onto the wall or the furniture. There wasn’t much room for a wheelchair anyway, and there was no elevator. But when we went out, they took me everywhere in it.

I felt sad and ashamed to be in a wheelchair. I thought everyone was looking at me, so I lowered my head and looked down. I couldn’t face the world. I tried to stand up as much as possible because I didn’t want people to think I was different. I didn’t want to think I was different. And as long as I didn’t know about my disease, I could believe that one day, my life would get back to the way it was.

But my life was different. There wasn’t any school in my town in Argentina that I could go to in a wheelchair. So when September came, my sister arranged for me to go to 8th grade at MS 2 in Brooklyn, New York, which was wheelchair accessible and near their house.

I couldn’t speak English well, and even worse, I was in a wheelchair. But my first day of school turned out great because I was in an ESL class and I didn’t need to speak much English. Best of all, my classmates didn’t seem to care that I was in a wheelchair. They treated me like a “normal” teen, and that is what I wanted above all.

There were other kids in my school in wheelchairs, but I was the only one in my class and sometimes I felt out of place. It was difficult not to notice the surprised look on some of the kids’ faces when I went from class to class. It hurt sometimes and I felt that they thought I was stupid since I couldn’t walk.

But my classmates were cheerful, and they made me forget about those looks in no time. They often took me down the hall running or, just before the teacher saw them, hid with me in the elevator. I loved when the other kids took me with them and made me part of their games. I felt like a normal teen.

And I quickly made a best friend, Fior Rodriguez, who’s from the Dominican Republic. After two days, we were talking nonstop to each other and soon we got very close.

Fior is like a sister because we know everything that’s going on in each other’s lives, like what guys we like, what situations make us uncomfortable, and which Spanish music video is our favorite. Fior looks out for me, but her concern about me is different than my family’s. Fior treats me like a fellow teen and not like a fragile child.

I made many other friends by the end of 8th grade, and I graduated from junior high with good grades even though I was often absent for doctors’ visits. I also left class for physical therapy in the school’s gym. It was fun because we’d bowl or play basketball and so it didn’t feel like physical therapy at all.

image by Gary Smith

Over the summer, I continued physical therapy at Kings County Hospital three times a week. I’d do a lot of special exercises to make my legs and arms stronger, like ride the bike or sit on a big red ball and try to keep my balance.

My hopes rose because I was able to walk more than I had been. Even though my balance was as bad as ever, I thought that with more therapy, it would improve. I dreamed of starting high school walking like a “normal” teen.

But when I started 9th grade at Brooklyn International High School, I was still in a wheelchair, and now I was the only one in a wheelchair at school. I felt more out of place than I had in junior high.

I could see the other girls walking and staying after school, talking to friends or doing after-school programs. I couldn’t stop thinking that before I came to this country, I wanted to have a life like them. “But now I can’t because I’m sick, because I can’t walk,” I’d think. “Why me?”

My disease was developing, and now my handwriting was getting slower. I felt ashamed of not being able to walk or copy notes or do my work fast enough, and sometimes I became shy around other teens. I’d think, “Are they looking at me? Do they think I’m different?”

Sometimes I felt angry or very sad, but I still didn’t want to know about my disease. I just couldn’t bring myself to think about what my disease was or what would happen to me in the future.

Dealing with the present was tough enough. I couldn’t stay after school because it was difficult to get transportation for me. At 3 p.m. I had to wait for the yellow bus to pick me up. I’d go home, do my homework and watch novelas (Spanish soap operas) and American movies. Many times I thought, “I always have to stay inside this box while other teens have fun,” wishing I were outside playing, talking to friends, and having a good time.

Now it hit me that I was in a strange country, and I missed my friends from Argentina. Sometimes I just wanted to go back and be with my friends there. We still kept in touch by phone and e-mail. They knew me as the healthy, cheerful, and happy Tania and understood how bad this was for me.

I rarely went outside except for school and church. Every Sunday I got excited because I would go outside, even though it was only to church. I felt good when I was in church because God was and is my biggest support and strength.

Still, sometimes I thought that God was responsible for my inability to walk and I got angry. My family would tell me that I shouldn’t blame God for my disease, that God does everything for a reason. I felt annoyed when they told me that because it sounded completely stupid. I’d just sit there playing with my hair, asking myself, “What reason is there to make me stop walking properly if I was just fine the way I was?”

When I slept, I dreamed I was walking and doing so many things, like running with other teens or just being around guys. When I woke up, I felt like my reality was the nightmare.

Fior was always there to listen, talk, and comfort me when I was depressed. Once when I got really sad because I’d had a stupid fight with my mom, I called Fior.

“If I see you crying or sad, it breaks my heart,” she said. “You are my strength and you have to be strong.” I felt better after that because someone was counting on me to give her strength and I didn’t want to let her down. I felt more useful rather than a burden.

But it was hard to keep from thinking about all the problems my disease was causing, and little by little I stopped doing my therapy. I didn’t see why I should continue if it was of no use. I still couldn’t walk. I saw everyone living a healthy life, walking, and when someone in my family tried to talk to me, I’d just hide by busying myself with something so they’d go away.

I preferred communicating over the Internet. Since no one could see me, they couldn’t judge me for not being able to walk properly. Plus, I didn’t have to speak English, only write it, so I didn’t have to pronounce hard words.

When I got home from school, I’d go on the computer and stay online for hours. I didn’t talk to my family like I used to and that made my mom mad. She also thought I was “doing bad things and talking to maniacs” when I was online. We got into fights over it, which pained me because I didn’t like to fight with her.

But sometimes I felt good that she thought I was doing bad things because I know that’s what many people think of teens, and it was comforting to know that she thought that I behaved like other teens. It made me feel less different.

At first I went to many different chat rooms with games. My father had taught me how to play dominoes when I was little so I started playing a lot in a dominoes room. I liked being able to practice and talk to people at the same time, especially because I often won. It felt great when they said, “Wow, you are a smart and lucky young lady!”

I made some close friends, though I didn’t tell them about me being in a wheelchair. Adam, 17, makes me laugh and his comments show me he knows how to listen. I like that Adam tells me his problems and appreciates my advice. Jason, 19, speaks Spanish and has become like a brother to me.

And Sally, about 38, treats me like a daughter by listening and giving me advice. She even visited me and my family from Texas for a few days last summer. I talked to my dominoes friends every day and I felt that they understood me.

image by Gary Smith

They made me feel more comfortable about myself and I started to feel more tolerant of people who looked at me with curiosity and sadness.

Wherever I went people often asked me why I was in a wheelchair and I’d just say that I have a disease. But my answer started to seem unsatisfying to me. After three years of not wanting to know about what I had, I realized I was curious, too. Besides, I wasn’t getting better and it no longer seemed possible to ignore the disease.

So I did some online research, just to get the basics. I was amazed to see that other teens have Frederick’s ataxia because I thought that it was just me. In fact, it’s a genetic disease (that means that the disease is in my body’s cells) that mostly develops during childhood.

I was really sad when I read that some people with this disease die in early adulthood if heart problems develop. I have some heart problems and that scared me a lot.

I instantly talked to Sally, Adam, and Jason about it because they were the ones I felt closest to at the time. They tried to comfort me. They told me not to think about it because no one knows when we are going to die and that God is the one who decides when we have to go and when we have to stay.

Those words helped me feel a little more confident about living today and not worrying about the future. Since I hadn’t told them I had a disease, I was worried that they’d feel disappointed with me and treat me differently. I was relieved to see that nothing changed between us.

But I still felt shocked and sad by what I learned about my disease. It will continue getting worse as I get older. I didn’t talk to anyone else about it, not even Fior, because I didn’t want them to worry or pity me. I just couldn’t stand people feeling sorry for me.

Learning more about Frederick’s ataxia freaked me out, but instead of sinking me into more of a depression, it made me get out of my shell and stop feeling sorry for myself. I felt that I have to live all the life I have left, even though it sounded a little stupid because it wasn’t like I only had 10 days left. So I tried to get outside and have as much fun as possible.

On a trip to the park with my mom and sister, when we got to the top of a hill, I asked my mom to let go of my wheelchair. She was worried and refused, but I said, “Please Mom! Let me go, please!” until she said yes.

I went down the hill really fast. I smiled triumphantly at people on bicycles as I flew down the hill. With the breeze hitting my face, I felt free, powerful, and brave.

When I reached the bottom of the hill, I had to wait for my mom and sister to come down. It was funny because they looked like they were going to have heart attacks, but after they saw that I was OK they calmed down.

I’d play hide-and-seek with my nephew and niece when we went to stores, too. We’d rush all over the store and try to hide between the rows of clothes. It felt awesome when I played with them. It was as if time stopped for me so I could think and feel that I was part of something. It made me want to have moments like these every day.

Not long ago, I had surgery, not related to my disease, to take a “mass” out of my pituitary gland (a gland that controls hormones). Three days before the surgery, I went to the hospital to fill out some papers and the nurse, Jeffery, saw that I was nervous. He started to talk to me.

I was touched when he said, “I know that you ask yourself, ‘Why am I like this and other teens can walk and run and have a good time while I’m in a hospital?’ You have to remember that God puts us on this Earth for a reason. Maybe your reason for being like this is because you have to give an example to others that you can do wonderful things even though you are in a wheelchair and you have to face so many problems.”

It was exactly what I wanted to hear. Even though it was the same thing that everyone, especially my family, had been telling me, I really listened to Jeffery. I felt that he understood me and that he knew what I was thinking and feeling. And when he looked me in the eyes, I saw that he was telling the truth.

After the surgery I went to the recovery room and for the first time I had the experience of being around other kids under treatment or having surgery. I never thought there were so many small kids with the same or worse problems than me.

It made me feel bad because they were so small and they had so much life—running around, jumping, smiling, and complaining to their doctors because they’re always getting pinched with needles. I was older and I didn’t have the energy and happiness they did.

I had to stay in the hospital for a week, but my family took turns staying beside my bed day and night, even though they had to eat that nasty hospital food. I saw how much they loved me and I thought how selfish I’d been that I didn’t see it earlier.

When I got home from the hospital, I tried to be with my family as often as possible and show them all the love I have for them. I wanted them to know that I care for and love them as much as they do me.

I now know that I have to have more confidence in myself and look at people and at life with my head up. My doctors told me to keep living my life, that I don’t have to worry about what other people think of me and that I shouldn’t live with the fear of what will happen in the future. I know that there are other people like me in the world, and they just live their regular lives, too.

So I keep busy with things that interest me. I have two internships, at a teen magazine and at the Prospect Park Zoo, plus I go to an after-school program at the American Museum of Natural History where I learn about astronomy. I get around the city on buses and Access-A-Ride (a door-to-door van service).

I realize that if I do nothing, it only makes me see the dark side of things, but if I’m active and busy, I can see the bright side of everything. I’m starting to explore the world. I feel more confident that I can keep going with the support of God and all the people around me.

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