Carol Ann Evans
c 2010 all rights reserved
A Place For Lara
My name is Jack “The Quarterback” Wilson. I don’t know why I told you that. I haven’t been called that since I went to high school. I wanted to play football for the University of Michigan back in 1980, but I turned down a full scholarship. My parents still haven’t forgiven me. I want to tell you my story-- the five years and one person who changed my life.
Lara looked like thin, small, fragile when I first saw her. Dwarfed by battery packs, she was barely noticeable in the huge, powered wheelchair she sat in. Surely they made a smaller chair for smaller people. I didn’t know it then, but she was already in the smallest motorized wheelchair made. I’m getting ahead of myself. Let me start from the beginning.
Lara was one of five children in the Stevens family; they all had muscular dystrophy and were confined to motorized wheelchairs. They belonged to a group called Jerry’s Kids. Jerry Lewis, the actor, raises funds every year for the fight against muscular dystrophy. He sponsors a yearly Labor Day telethon. It is a big deal because he raises millions of dollars for research. People are interested in finding a cure for this disease. It takes the lives of thousands of children each year.
When I was a senior at Riverdale High, I was a big-shot varsity football player. Lara was a volunteer teacher’s aide. I was popular and reckless. I had no respect for anyone, including myself. I knew Lara because she got in my way once when I was running to class. Anyway, we met through Jocks in Socks, a school program to teach trouble-maker jocks to be more considerate of other people and their property. The trouble-maker jock would serve one week in the community helping a disabled person. The sock part meant the offender had to take off their shoes and walk in the disabled person’s shoes. We didn’t literally change shoes with the disabled. It was more like a lesson in humility. I never understood the comparison to shoes because most of the disabled people in our community were in wheelchairs. They didn’t walk in shoes because they didn’t walk at all.
Shoes or no shoes, I got caught painting graffiti on the outside school wall and ended up in the program. Lara Stevens was my assigned disabled person.
During our week together, I learned about the life of a cripple. I mean the physically disabled. I never knew muscular dystrophy existed; I never watched Jerry’s telethons. I quickly learned that I never wanted the disease, and I wasn’t sure about being associated with anyone who had it, either. My job was to push Lara around to her many appointments. I only pushed a button, the chair did the rest. Was this helping? I felt like a mule. I also assisted her with volunteer teaching. I wheeled her to her class and positioned her next to the teacher. She could barely speak or move, so she sat in front of the class, smiling. Was that teaching?
We settled into a routine, Lara and me. We were a team. She pointed the way and I pushed. Something was happening inside of me, though. I couldn’t sleep. I couldn’t eat. I couldn’t explain this feeling but it was definitely there. It happened so fast, so unexpected. I started to look forward to our time together. One day she wanted to touch my hair. It made her smile. From that moment on I thought about her smile all the time. Yes, her smile and her eyes. They were deep brown, so innocent, so penetrating. Looking into them made my heart pound. Was I falling for Lara? Was she falling for me? The thought made me smile. My friends called it pity. My parents called it pathetic. I called it love.
Lara wanted to continue our routine after the assigned week was over. I wanted Lara to move in with me after graduation. I explained my feelings about Lara to her parents. It was a nightmare, they were very skeptical about my intentions. Lara didn’t need their approval but it was important to her to have their blessing. I needed to prove to Lara’s parents that I could take care of her. I went to Lara’s house every day for almost a year. I was there before work and after school. I helped the family with chores and helped care for Lara’s siblings. I knew I had to earn her parents’ respect. We included her family in our conversations and activities. It was easy to care for Lara, though, she directed me and I followed. I delicately dressed her and did my best to respect her privacy. Lara wanted me to show her parents I could bathe her. I didn’t want to embarrass anyone so I carried her to the bath tub fully clothed and proved to her parents I could complete the task. We ate dinner together each evening. I fed her but I think most of her meal ended up on my clothes. Lara was patient with me and always gave me an encouraging smile. I loved her more each day.
Finally, Lara’s parents gave their blessing and she was allowed to move in with me the summer after graduation. We got a handicapped-accessible apartment on the lower east side of town. I had some money saved and Lara got a disability check every month from the state. If we were careful, we would have enough money to live on for three years. Then I would think of something so we could stay together. I would make it work.
Lara communicated mostly with her eyes. She could speak only in whispers. Over the next few years, we got really good at speaking to each other with looks. She barely moved her body but she could move her hands fairly well. I had to change her position every half hour to prevent her delicate skin from getting sores. When she told her parents that she wanted to go on birth control pills, they thought I was a monster. Lara wanted to experience all of our love. She was twenty-four and I was twenty-one. We were adults so I saw no reason why she couldn’t make this choice for herself but we made the choice together. I wanted to marry Lara but the state would stop her income so we pledged our love to each other in private.
My friends thought I was crazy for living with Lara. “You gave up University of Michigan, man!” they said. “Why are you wasting your time with this chick? She’s going to die. What then?” One by one my friends stopped visiting us. I didn’t care what anybody said. I could handle this. I was with Lara. Nothing else mattered.
Over the next two years, Lara got severely frail. She no longer volunteered. She couldn’t speak at all. She could hardly move her fingers. I designed an alarm system with my stereo remote control so she could wake me during the night if she needed me. I put thimbles on her first and second fingers. I attached wires to them from the remote. When Lara moved her fingers and touched the wired thimbles together it sounded the alarm. The stereo would blast full volume and I was there. She would look appreciatively at me; I needed her as much as she needed me.
Lara’s doctor said children with muscular dystrophy usually don’t survive past teen years. My Lara was twenty-six; she was going to die soon. I promised Lara I would take care of her until she died. She smiled appreciation to me.
Money got scarce so I took a part-time job. Lara’s parents wanted her to move back home. When she refused, they got a court order to stop her disability income. They were her legal guardians; I had no say in the matter. I worked midnights and took care of Lara during the day. Our neighbor agreed to help Lara while I was at work. The stereo alarm would alert her if Lara needed help. It woke up everyone in our apartment complex every time it went off anyway. Nobody minded, though. Everyone loved Lara.
I had my job for just under a year when Lara’s parents reversed the court order. Lara got her money but it was too late. Lara was in the hospital and she was dying. When I visited her hospital room her family made a human wall around her bed so I couldn’t see her. Lara’s parents didn’t want me near Lara. They were still mad at me for siding with Lara about the birth control pills. I wasn’t allowed in her room. I waited in the hospital stairwell until her family left then I slipped into her room and sat at her bedside.
“Lara, Lara,” I cried in a whisper. She looked “Goodbye” at me. The nurse walked into the room. I was trapped. I knew I wasn’t supposed to be in Lara’s room. The nurse will probably tell me to leave but I’ll beg to stay if I have to. The nurse smiled at me. “You must be Jack,” she said. “I heard Lara’s family talk about you. They said that Lara loves you very much.”
“I lover her, too,” I said. “I need some time with her. Can I stay?”
“I’m here until seven in the morning,” the nurse said. “You can stay if you’re quiet and no one notices you.”
My Lara was dying. I have always thought of myself as big and strong but I didn’t know if I could handle this. I got down on my knees to pray.
“God,” I said, “please take care of Lara. Please make a place for her near You so that You can watch over her all the time. I’m trusting You with Lara, God. She’s my love, my world, my life. Amen.”
I looked “Goodbye” to Lara. She nodded back at me and then closed her eyes to sleep. That was the last time I saw those deep, brown, china-doll eyes.
I stayed all night. I talked with Lara’s nurse when she came in to check on Lara’s heart monitor. When Lara turned eighteen, she had signed a paper stating she did not want to be put on life support if her heart stopped. I knew Lara’s heart was failing, she would probably die tonight.
Lara’s nurse sat with me when she had a break. I talked and cried. The nurse listened and handed me tissues. I told the nurse everything; my feelings, my hopes and my dreams. I told her about the football scholarship I had turned down. I even told the nurse that Lara made me promise to go back to school after she was gone. Everything just poured out of me. I couldn’t stop it. The nurse just sat next to me and never said a word. She just listened patiently. Eventually, I didn’t say anything. I sat there staring off into space.
Finally, I broke the silence. “Although I am strong,” I said, “I can’t handle this. It’s so unfair. God has no right to take Lara. I did everything for her. I took care of her for five years.”
The nurse looked at me and smiled. “You know, Jack, God loans us the people we love; we don’t own them,” she said. “If you want Lara to live on in your life then do the things you talked about when ……”
Lara’s heart monitor alarm interrupted the nurse. She ran to Lara’s bedside. Lara was dead. My love was gone. I kissed her cheek and left—numb and alone.
Four years later, I was at the commencement ceremony for my college graduation. I had completed a bachelor’s degree in Psychology. When I walked across the stage to get my diploma, I looked out and saw Lara’s nurse. She was in the middle of the front row. She was sitting at my graduation ceremony, smiling at me! I wanted to thank her for letting me stay with my Lara that night in the hospital. I wanted to thank her for letting me say goodbye to the one person who changed my life forever.
“Thank You,” I mouthed toward her. She nodded back.