"Rewriting the Myths, Redefining the Realities"
by Carmelo Gonzalez
Carmelo’s roots are in the Puerto Rican community in New York City. In this excerpt, we focus on his family experiences. Although life is difficult for Carmelo in many ways, it is impossible to read his work without feeling the love that he receives from his family and community.
Carmelo tells his story as it is, sometimes with joy, and sometimes with humor that is simply hilarious.
Carmelo tells us what it is like to grow up with a disability, to suffer and to experience great happiness. In this autobiography, Carmelo shares with us his family, his friends, and the intensity of his life. The following is excerpted from Carmelo’s autobiography.
Let me introduce myself. I’m a 31-year-old person with Cerebral Palsy. I get around in a motorized wheelchair. I have lived in New York City Housing for about ten years. I graduated from Frances Lewis High School in June of 1988, and I moved out of my mother’s house in October of that year. I go to the movies about twice a month. I also like to go to concerts. I’ve been to a few concerts in my lifetime. Sometimes I just like to go out on my power wheelchair and take long walks. I like to go to Florida to visit my ex sister-in-law, Irene, my three nieces, and my godson.
Since I was eleven years old, I kept a secret from my family, but finally, I told them on December 26, 1991. At first, it was hard for them to deal with it, but they accept it now.
I was born on March 13, 1968 into a family that wasn’t ready for a disabled child. My father was in jail. When I was born I had an attack, but the doctor told my mother that I was okay. He wanted to keep me in the hospital in case I had any more complications, in case I had another attack. They wanted to keep track of me. Two months went by and I was fine, so they let my parents take me home.
Everything was fine. I was walking and talking like any other baby until I was two years old. That’s when I got sick. You see, my mother and father went out and my aunt was baby sitting us. My mother told my aunt to keep an eye on me because I was a little sick. My aunt had some of her friends over and she was getting high with them and she wasn’t watching me. So I got sicker, and my fever got higher. When Mother came home, she found me with a 103-degree fever, and my eyes had turned back. Mother grabbed me and ran to Lutheran Hospital. When she got there, I was half-dead. They grabbed me from my mother’s arms and put me in ice cold water to try to bring down the fever and to keep me alive. Then Father came in to try to calm Mother down. They came and told my parents that they were trying to save my life, but they weren’t sure they could. Mother grabbed the doctor by his coat and told him, "You have to save my son! Please, you have to!"
"I’m going to try my best, but there is no guarantee that I can. But if we are able to save him, he might have some brain damage."
"I don’t care. I just want my son alive," Mother said, crying to the doctor.
Then a priest came in to tell my parents that he wanted to baptize me. "It’s just a precaution," he told them. "We do this in cases like this." My mother asked the doctor and nurse that were taking care of me if they would be my Godparents.
Two or three hours went by before the doctor came to my parents. He told them, "Mr. and Mrs. Gonzalez, I have good news and bad news. Your son is alive, but he has Cerebral Palsy." The doctor told them that I would have difficulty doing things and I may not be able to walk or talk straight. They decided to keep me there as a precaution. I was there for three months, then my parents took me home. While I was in the hospital, Mother would come to see me everyday to feed and take care of me. One day, she came and found me tied up, dirty, and bleeding from my nose. The nurse came in and my mother asked her, "What the hell is going on? Why is my son tied up? Look, he’s all dirty, and he has blood coming out of his nose." Mother then untied me and she was getting ready to pick me up when the nurse pushed her. I almost fell to the floor. Mother put me back in the crib, turned around and punched the nurse dead in the face. My mother and father took me home that day without the doctor’s consent.
That year, my mother and father weren’t getting along. My father was using drugs and he used to treat my mother badly. When he got high on drugs, he used to beat on her. She couldn’t take it any more; she was going to leave him. One day, she went to look for an apartment. She left my aunt to watch us kids. My aunt was using drugs and she and her husband set my mother up. They put drugs all over the house and called the police. The police came and found us alone with drugs in the house. They took us away. They put my brother and two sisters in a home, and they put me in a hospital. They called my father. My father came and got me and he put me in a different hospital under a different name so my mother wouldn’t know where I was. My mother did not know where I was until I came out of the hospital. When I was in the hospital, Mother and Father split up, and I went to live with my father.
I was living with my father, my three sisters, Miriam, Carmen and Nilsa, my two brothers, Nelson, (his nickname is Papo) and George Jr. George was named after my father. I also lived with Father’s wife, Nancy, and her daughter, Madilyn. We lived in a second floor apartment at 125-19 Rockaway Boulevard in Queens. It wasn’t one of the best apartments you could have, but it was a roof over our heads.
I remember when I came home from the hospital, my two older sisters, Miriam and Carmen, and my older brother, Papo used to play train with me. They used to push my wheelchair around the house saying, "Choo choo", going in and out of the rooms. We also used to play Monopoly and sometimes with the Monopoly money we used to gamble. It was fun doing that with my brother and sisters. We had a lot of fun back then.
When I came home, I couldn’t speak that well, so it was hard to understand me. I couldn’t sit up straight in my wheelchair or feed myself. They used to have to do everything for me. After a while, my sister Carmen was the only one that understood me because I was always with her. She tried to teach me how to feed myself and do things for myself. I was six years old when I started going to school at United Cerebral Palsy. That’s when I started to speak better and sit up in my wheelchair.
That year the court gave my mother custody of my two older sisters, Carmen and Miriam, my older brother, Nelson, and me. Nancy set my father up. She got him arrested for possession of drugs. The court wanted to put my sisters and brothers into a home and me back into the hospital. When Carmen heard that, she picked me up and ran out of the courtroom. They found my mother. She came and fought to keep us. She won custody of us, but they didn’t give her custody of Nilsa and Georgie. Mother wanted to have custody of them, but she couldn’t have it because she wasn’t their mother. Every now and then I think about them and wonder how they’re doing. I miss them and I wish I could meet them again one day.
Back then, Nelson and I used to have a lot of fun. We used to play with these toy soldiers we had. I used to set them up around the living room as though they were at war and were ready to kill the bad guy. Guess who was the bad guy? Yep, it was me. Whenever the army men shot me, I felt every shot they made. You may ask how did I feel it? Well, Nelson used to use his fingers as bullets. He would poke me to make believe I got shot. He would make sure I felt it. He would poke me hard.
Nelson made up these three super heroes called Congor, Thongor and Mongor. They were his fingers. You may be asking yourself, "What is he talking about, his fingers?" You see, Congor was Nelson’s first two fingers, then Thongor was the other two fingers on the same hand. Mongor was all five fingers on the other hand.
At first there was only Congor, but most of the time he wasn’t on my side. I don’t think Nelson would like playing like that anymore because when I got a hold of his fingers, I hurt him. I used to grab his fingers and try to break them. If I did that now, I would break them. When Nelson got sick of bringing him back to life, then I would kill Congor. Whenever I got a chance to kill him, and that wasn’t often, that is when Thongor and Mongor came to life. We used to have fun when were little, making up these sick games.
That Christmas, my cousin Arnold came over. We got fire trucks for gifts. The next morning, Arnold and I got up early, about seven o’clock. We were playing with our trucks and we got tired of making believe that there was a fire. We wanted to put out a real fire. So Arnold said, "Hey, let’s get some paper and make a fire so we can put it out like the real firemen do." So, we started to burn some papers. One paper fell in the garbage and it went up in flames.
"Oh my God! Get some water to put out the fire!" I said. So, we put the fire out. The kitchen was all black from the smoke. We didn’t know what to do. We were scared of what Mother would do to us when she found out. So we grabbed some rags and started to try to clean the mess before Mother woke up and killed us. We didn’t make it. My mother smelled the smoke and came in the kitchen and saw us on the floor trying to clean it up. We were all black from the smoke.
"What the hell are you two doing?" Mother said. We looked up at her with our two black faces.
"We were playing firemen and we needed a fire so we could put it out." My mother tried to hold it in, but she started to laugh because we had the saddest looks on our faces. She had to laugh. She told us to go and take a bath. We never did that again, but we used to do other things that were just as bad.
The year my father got out of jail on probation. When he had me with him and we were around his friends, his friends would tell me how much my father used to talk about me. When I was around his friends, I had it made. They used to get me whatever I wanted.
My father used to sell drugs for a living. It may not have been right for my father to sell drugs when I was with him, but he did. When I was with him and he was selling, he used to make me hold the drugs and the money so the cops wouldn’t catch him with them. He always told me, joking around, "Here Carmelo, hold this and if a cop comes to search you, just act like you’re crazy. Shake your head and make weird sounds." I never had to do that. You might be saying to yourself, "How could a man do that to his son?" To me, it was a way of life. I don’t think my mother knew about that because if she had known, she wouldn’t have let father do that. It didn’t bother me. I liked having all that money on me, and I liked being around my father. Yes, I was young. I was eleven years old. But it was a way of life for me. If you ask me, I’m glad I had to deal with it early in my life. It made me see what drugs can do to someone, and I didn’t want to be one of them.
Elvin came to stay with us in the middle of the summer. I know kids do crazy things when they don’t have anything else to do. I doubt that most kids would have done what we did, though. One day we were outside and we didn’t have anything to do so I asked Elvin, "Yo, Elvin, why don’t we go to Papo’s house?" My brother lived three or four miles away from me.
"How are we going to get there? We don’t have any money for the bus. I hope you’re not thinking that I’m going to walk there."
"Why? We’ve walked there before."
"Yeah. I’m not going to walk there now. It’s too late. It’s ten o’clock. By the time we get there, it would be eleven thirty at night. I do want to go but…" As Elvin was telling me that, a cop car was going by. I turned to Elvin.
"Wait! I have an idea!"
"I don’t like the way you said that. What are you thinking? I know that look."
"We could get the cops to take us down there."
"How the hell?" Elvin asked.
"Well, we can call 911 and tell them that we are lost and we need help to get home."
"Are you nuts? Even if they believe us, what are we going to tell Papo when he sees us with the cops?"
"Who says that he has to know that we had the cops bring us there?" I asked.
"But Carmelo, he’s going to see the cop car."
"Not if we tell the cops that we live in a house two blocks away."
"Okay, let’s do it. I hope it works," Elvin said as we went to call.
When the cops came, we got a little scared. Elvin looked at me and asked, "Do you really want to do this?"
"We can’t back down now. They’re here." So we got into the cop car and off we went. The cop was asking us what we’re doing so far from home. We didn’t know what to say, so we told them that we got on the wrong bus.
As we were getting closer to Papo’s house, about three blocks away, we told them that they could leave us there and we would walk the rest of the way home. They told us that they had to leave us in front of our house. Elvin and I looked at each other as if to say, "What in the hell are we going to do now?" I saw a house that was dark, so I said that we lived there thinking that they were going to let us go. They didn’t. One of them knocked on the door. Elvin and I hoped that no one was home, but they were. You can imagine the looks on our faces when we saw someone open the door.
When the cop asked if we lived there and they said no, he came back to the car with a mean look on his face. He said, "If you kids don’t tell us where you live, we’re going to have to take you both down to the station." When we heard that, we sang like two jailbirds. When we got there, he knocked on the door and Irene came out. We were in the cop car sh--ting bricks when we saw the cop talking to Irene. The windows were open and we heard them talking. He told her that we called them saying that we were lost and we tried to tell them that we lived two blocks down. Irene thanked them and said she was going to talk with us.
When we got upstairs, Irene asked us, "Are you people crazy or what? Why did you tell the cops that you were lost?"
"We wanted to come over and we didn’t have money for the bus, so we called 911 and said we were lost," I told her.
"It was Carmelo’s idea. He told me to call them," Elvin said.
"When your brother comes back from the store and he hears what you did, he’s going to kill you both," Irene said looking at me. We both got on our knees and begged her not to tell Papo.
As we were begging her not to tell Papo, we heard him coming up the stairs. "I guess he’s home. What should I do?" she asked with a big smile on her face, like in a way she was saying to us, "I got you now!"
"What are you guys doing here?" Papo asked.
"We didn’t have anything to do so we thought we’d come over," we said.
"How did you get here?" he asked. We both looked at Irene. She gave us a smile.
"Go ahead, Carmelo," she said. "Tell your brother how you got here. Go ahead." I didn’t know what to say. My mouth opened, but nothing would come out.
"You want me to tell him?" she asked. "I’ll tell him. You won’t believe how they got here." When she said that, Elvin and I turned and looked at each other like, "That’s our ass. Now we’re up a creek."
"How did they get here? What did they do, hitch hike?" Papo asked Irene. When he said that, we were sure that she was going to tell him.
"They walked all the way over here," she said. We were so relieved that she didn’t tell him about the cops. When Papo went to the bathroom, she said, "You guys owe me. After dinner, you two are going to do the dishes and clean the kitchen."
"But…"
"But nothing. I could easily go and tell Papo how you really got here," she said, cutting me off.
"Okay," we said. "We’ll do the kitchen!"
Copyright 2002 A&H Publishing Corporation