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Disability Life
Rewriting the Myths, Redefining the Realities
 

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Mom Priscilla and Sunshine

 

Friend Lilly

 

 

Sister Carmen, sister-in-law Irene, cousin Arnold, and Carmelo (above)  Paula (below)

 

Growing Up in the Barrio:  The Life and Times of Carmelo Gonzalez - Part II

by Carmelo Gonzalez

Publisher’s Introduction
In the second excerpt of his autobiography, Carmelo Gonzalez tells what it is like to undergo surgery and rehabilitation. We often forget how frightening it can be for a child to face the pain and loneliness of months of hospitalization. A child with a disability is likely to experience many episodes of surgery, rehabilitation, isolation from family and friends, and boredom. Carmelo shares those experiences with us, he also shares much more.

Even in the face of pain, loneliness, and isolation, Carmelo demonstrates his resilience, love of life, humor, and mischievousness. Wherever he is, he makes a home. Wherever he goes he makes friends. He is sorry to leave even the hospital.

1981
That year, my doctor told my mother that I was going to need to get an operation to loosen the muscles in my legs. The operation would help me to stand up straighter. They said that they would like to do it after my thirteenth birthday, so they set the date for March 20, 1981 at the Hospital for Special Surgery. We also had to move out because our landlady was selling the building. My mother asked the landlady if she could wait until I went into the hospital to move. The landlady agreed and said it would be okay. It was just three weeks until I had to go for my operation.

The big day came. I was scared to go into the hospital. I didn’t want to stay. They took me to the room that I was going to stay in. There were three other kids in the same room. My mother, Carmen and Ralph, my mother’s husband, went with me.

“Isn’t it a nice room?” my mother said to me.

“I don’t like it. I don’t like it here. I want to go home,” I said. It was the first time that I was going to be away from home and away from Carmen. The nurse came in and told my mother that they had to leave.

“We have to go now,” my mother said. “Me and Carmen will come tomorrow. You’ll be okay.”

“Yeah, you’ll be okay. We’ll see you tomorrow,” Carmen said. So, they left. I was scared, but I turned to the boy in the next bed and started to talk to him.

“Hi. My name is Carmelo. What’s yours?” I asked him.

“My name is Mike. That’s Tom, and over there is Jim.” I said hi to them.

“Was that your family that was just here?”

“Yes. That was my mother, sister and step-father.”

“What are you going to get done?” Tom asked.

“They are going to loosen the muscles in my legs so I will be able to stand up straight,” I said.

“Is this your first operation?” Jim asked.

“Yes. How about you?” They all said yes. Then my phone rang. I had my own phone next to my bed. I picked it up and it was my mother.

“Hello? Oh, hi, Ma. I’m fine. I was just talking to the guys.”

“Me and Carmen will be there tomorrow, okay?”

“Okay, Ma. I’ll see you tomorrow. I love you.” Then I went back to talking to the guys. We talked until nine o’clock when the nurse came and told us that it was time for bed.

***
I was in the cast for a month. It was the longest month I ever had. It used to kill when I had an itch that I couldn’t scratch. I used to hate when that happened.

I thought that I would be so happy to get the cast off, but that night I was in so much pain that I thought I was going to die. The next day when they took the staples out, I was able to bend my legs and sit down in my chair again. It felt so good to be able to sit in a chair again. The doctor told my mother that in a week they were going to send me upstate for rehabilitation. I would be there for a few months.

The day came when I had to go to the new hospital. My mother and Carmen went with me. It took about two and a half hours to get there. When we got there, a guy named Bill Atkin’s was waiting for me. He was my caseworker. He showed us the room where I was going to stay and introduced me to one of my roommates. There were four guys in one room. Then he showed us around the place. It was nice. They had a room where you could go to listen to music, and they had a game room downstairs. I liked that.

After he showed us around, it was time for my mother and Carmen to go. I didn’t want to stay there so I started to cry. 

“We have to go, but you’ll be okay here,” my mother told me.

“I want Carmen to stay.”

“This is not like the other hospital. I can’t stay with you this time,” Carmen said. One of the nurses came in.

“Hi,” she said. “You must be Carmelo. I’m Jane, but some of the kids here call me mom. You can call me mom if you want.”

“No, thanks. I’ll call you Jane,” I said. Then Bill came in and told my mother and Carmen that it was time to leave.

“Carmelo, we have to go now,” my mother said.

“I don’t want to stay here alone. I want Carmen to stay with me, please,” I said.

“I can’t stay. You’ll be alright here,” Carmen said.

“Let’s go,” my mother told Carmen. “He’ll stop when we leave.” It was hard for my mother to leave me there crying.

“Don’t worry. You’ll like it here,” Jane said to me. At the time, I didn’t know that I would love it there. And when the time came for me to go home, I didn’t want to leave.

I stopped crying and started to talk to one of my roommates. There was one guy in the room at the time. 

“Hi, I’m Carmelo. What’s your name?” I asked him.

“I’m Jerry. Nice to meet you.”

“How long have you been here?”

“About five years,” he said.

“When are you going home?” I asked.

“I’m not. My parents can’t take care of me.”

“How is it here?”

“It’s okay,” he said. Then Jane came in.

“It’s time to go for dinner, Carmelo.” She grabbed Jerry and I followed them. Jerry had Muscular Dystrophy and had to be lying on a stretcher. He couldn’t breathe that well. He had a hole in his throat to help him breathe and he would whistle when he talked. 

After we had dinner, I went back to my room to put my things away. When I got there, I met my other two roommates, Mike and Jack.

“Yo, Jack,” Mike said. “Do you want to go and play some pinball?”

“There’s a pinball game here?” I asked excitedly. 

“Yeah. Do you want to come with us?” Jack asked me.

“Yeah, I would love to.”

“Okay, I’ll push you. Are you ready?”

“Yes, let’s go!”

The next day I felt more comfortable being there. I started to meet more friends. They were friendlier than the ones I had in school. I didn’t have to be competing with anyone to be the popular kid in class. No one was teasing anyone or laughing at what you couldn’t do. Everyone accepted you for what you were.

After school was over we could do what we wanted. As I went back to my room, a girl walked into me.

“I’m sorry!” she said

“It’s okay. My name is Carmelo. What’s yours?” I asked her.

“I’m Lilly. Where are you heading to?”

“I’m going to my room,” I told her

“I’m going that way. Let me give you a push,” she told me. She could see that I was having trouble pushing myself.

“How long you been here?” I asked.

“I came a month ago. My back was operated on.”

“Why? What happened?”

“I fell from a ladder and I landed on my back. This is my room,” she said as we passed it.

“Okay, I’ll push myself now. Thank you.”

“You can come by whenever you want,” she told me.
“Okay. I’ll see you later.”

***


I went downstairs to play some pinball. When I was going down, I ran into Mike.

“Where are you going, Mike?”

“I’m going to the wood shop.”

What wood shop? There’s a wood shop?” I asked Mike.

“Yeah! Do you want to come? Let’s go.” So, I went. That’s when I met Fred, one of the counselors that worked with the kids.

“Yo, Fred! This is Carmelo. He came last Friday.”

“Hi, Carmelo. My name is Fred. So, how do you like it here so far?” Fred asked me.

“It’s okay.”

“Yo, Fred, I’m going to work on my box,” Mike said as he left.

“So, Carmelo. What do you want to make?” Fred asked.

“I don’t know. I never worked with wood before.”

Well, how about a box? I’ll help you do it, but you have to do most of the work.”

“Okay!”

It took me about three weeks to do it, but I was so proud when it was done. I carved my name on the top of it and put a lock on it so I could lock it. I would go in the gift shop they had and steal some stuff. Not big stuff, just little things like playing cards and stickers that I put on my box. Things like that. Sometimes I would go downstairs where they had a copy machine. I used to take packs of paper and lock them in the box, too. Every time I go into my box now, I remember those days.

A month went by before my mother and Carmen came up to see me. Two days before they came, Katie, my therapist, gave me a motorized wheelchair that I could use to get around better on my own. I made my mother go crazy when she saw me in the chair.

“Look, Ma! Look what I can do!” I said, going real fast and spinning around.

“Stop, Carmelo! You’re going to hurt yourself!” she said. So, I stopped and showed them around the hospital.

*** 

About a month later, they split everybody up. They were building a new unit for the kids that just go there on weekdays. They put me in the children’s unit not knowing that one of the kids had chicken pox. They asked my mother if I’d ever had them. My mother didn’t know if I had them or not, so they told her that they were going to send me home just in case.

I remember that I didn’t like being home. At first I liked it. It was great, until a week went by and all hell broke loose. My mother used to drink back then. When she drank, she became a different person. One day, Mother and Ralph were drinking and they got into a fight. Everyone got into a fight. Papo, Irene and Carmen were living upstairs. I don’t really remember what happened, but what I do remember was watching Mother and Ralph fighting in my room. When they used to fight, believe me, it was like World War III. They used to throw things and sometimes they would hit each other. I used to watch them and want to leave, but I couldn’t go anywhere. I would have to watch and hear the fight even when I didn’t want to. I didn’t mind so much them fighting when Carmen was home. I don’t know why, but I felt safer when Carmen was with me. When I was there alone, I used to wish that I was back in the hospital. When the day came for me to go back to the hospital, I was happy as hell to get out of that nut house.

When I went back to the hospital, everything had changed around. Now they had three kids in a room instead of four. They put me in a different room with two new guys named Dan and Bobby. I went to see if I could find Jack and Mike and found Jerry in his room. 

“Hey, Carmelo! You’re back!”

“Yeah. I’m happy to be back.”

“Are you nuts or what?” he asked.

“No, I’m not nuts. I’m just happy to be back. So, where are Mike and Jack? I’m looking for them.”

“Well, Jack left last Thursday. He went home for good. Mike is down in the wood shop like always.”

“I’m going down to see Mike. I’ll see you later.” I was on my way down when I ran into Fred.

“Hey, Carmelo! When did you get back?”

“Today.”

“You’re just in time for the contest.”

“What contest?”

“Every summer we have a contest. It starts in the beginning of July and ends at the end of August. We divide ourselves into four groups. The groups are named after states. For example, my group’s name is Mexico. We have races and different events. The group that wins goes out on a trip to an amusement park. If you’d like, you can be in my group.

“Okay. What do I have to do?”

“Come. I’ll show you.”

*** 

Monday came and it was back to work on my legs. Katie came looking for me.

“Hi, Carmelo. How are you doing?”

“Okay,” I said as we were going to her office. When we got there, she introduced me to Paula.

“This is Paula. She is a student and she’s going to be working with us for six weeks.”

“Hi,” I said as I shook her hand.

“Katie told me a lot about you. I’m looking forward to working with you.”

“Let’s get to work,” Katie said as she pushed me to the mat.

They made me work hard three times a week. A month and a half went by. Katie gave me a leg brace that I used to have to put on when I went to bed. I hated it. It was like I was back in the cast again. It was almost the same as the cast. When I put it on, it was from where my legs started all the way down to my feet. I had to put it on five days a week. I had a brace on the weekends. Katie and Paula thought I might be able to use crutches, so one day they had me try them. I tried them, but I wasn’t ready to walk on them yet. I couldn’t balance myself on them yet. That day I got upset that I wasn’t able to walk on them. I really wanted to be able to use them.

“Don’t get upset, Carmelo. It’s okay. You’re just not ready to use them yet. We’re going to work on it,” Paula said to me as she took the crutches from me. Paula and I got so close that when the six weeks was up and she had to leave, she gave me her picture and her address. I never did write to her because I had my mind on other things like the contest.

*** 
So we worked hard getting ready for the contest three days a week. The time flew by and it was the big day. We had all kinds of events to do like wheelchair races, beanbag tossing, and thousands of other things like they have in the Special Olympics. When it was all over that day, we didn’t know who won because it was a tie and we had one more event to go. Each team had fifty balloons with a paper attached to it with a number and the group’s name. We had to let the balloons go and wait and see how many people called. So we waited. When the week was up, they counted how many calls came in for each group. My group came in second place and we got a pizza party. I had a lot of fun that day. 

About two days after that, Mike was going home. When someone is leaving, they take them out for something to eat and a movie. They could bring a friend of their choice, so Mike asked me to go with him. We went to eat and went to see Superman II. On the way home, we both made believe that we were flying the van back to the hospital. Looking back, it might have been a little silly to make believe that we were Superman and flying the van back to the hospital. We do crazy stuff when we’re young.

***


My life was going good. I was happier than I’d ever been. I had a lot of friends, a life with no fights in it, and I didn’t have to hear anyone saying that I was in the way or that they couldn’t do anything without taking me with them. I felt like I had a whole new life and I was happy with it. The times I was home, I couldn’t wait until I went back into his office and told me I was going to go home. Not for a visit this time, but for good.

I went back to my room to lie down. Lilly came to ask me if I wanted to take a walk around the courtyard. I went because she told me that she wanted to talk to me about something. 

“What’s wrong, Carmelo,” she asked as we walked.

“Nothing. Why do you ask?”

“I don’t know. You just don’t seem like yourself.”

“I guess it’s because I got some bad news today,” I told her.

“What?”

“Well, Bill told me that I’m going to be going home in three weeks.”

“That’s great! So why are you so sad about it?”

“It’s not so great.”

“What?” she asked me with a crazy look on her face. I started to tell her why I didn’t want to go home. Then Jill, Lilly’s roommate, came calling our names.

“Hey, guys. Guess what? I’m going home in two weeks.”

“Yeah, that’s great. Carmelo is going home, too,” Lilly told her.

“I have to go tell Steve. I’ll see you later.” When she left, I told Lilly not to tell Jill what I’d told her.

The day came for me to go home and Jane helped me pack. I went to Bill’s office to give him a box I’d made with his name on it. When my mother and Carmen came to get me, they showed my mother how to put my brace on. We had to wait until they got us a van to take us home. It took us a long time to get home.



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