"You stupid jerk!" I sneered at my brother, Ben. I had discovered my new notebook filled with his illegible scribblings.
"You the stupid jerk," he said back with a slight pout and hurt more than anger in his eyes.
I was twelve years old and hated him most of the time, and I was embarrassed by him the rest of the time. When he was not around, I did not think about him. In my mind, I was an only child.
Ben was three years older than I, but because of trauma at birth, he was mentally handicapped or "retarded" and was more like a little brother. His degree of retardation is somewhere between severe and mild. He thinks on the level of a second grader .
He is a little taller than I, has dark blond hair, and deep green eyes. Ben has always been thin but is surprisingly strong. His powerful hugs are shared frequently and generously with any acquaintance or stranger.
When we were little, I was his "Sissy." This was because he couldn't pronounce my whole name, so he shortened it. For a while we were playmates and friends.
"What's wrong with your brother?"
This question haunted me for two decades. I did not know how to explain it when I was young because I did not know.
When I was older, I dreaded having to explain it. Ben's seizures were a constant fear of mine. Where would he have his next one? In front of my friends? My boyfriend? In the mall? He had them as often as several times a week.
When I was fifteen, I agreed to stay alone with Ben for the day while my parents visited my grandfather in the hospital. Ben began having a seizure, and I began to scream at him to get him to come out of it. My mother sometimes did this to "talk" hi m out of having the seizure. When that did not work, I cried and did not look up until I could hear him coming out of it. When I stopped shaking, I called my parents and told them I would never watch him alone again.
After high school, I stayed away from home as much as possible. At twenty-one I married and began to appreciate "home" more.
Ben found a soul-mate in my husband. They played and laughed together on our monthly visits. Ben came to love him very much. For the first time, Ben and I had something special to share. We began to talk more and bicker less. It was a slow proces s but I was finally growing up.
Most people say adulthood "snuck up" on them. I remember the week perfectly. I had been married for two years, and my teaching job provided me with free summers. I mentioned to my parents the opportunity for them to take a cruise was a reality. My offer to stay with Ben was delivered nonchalantly to my mother who had always been anxious about my relationship with my brother. With a little reluctance at first, my parents finally decided to take the cruise.
"You are absolutely right! It will be perfect," my mom said as she called to make the arrangements.
The first week of August, I planned to come back to my hometown, stay in the house I lived in for eighteen years, and take care of the brother I had wished a few years ago did not exist.
Ben was excited about our week together; I was so nervous I could not sleep at night. I constantly dreamed about the thousands of things I would do cause him to have a seizure.
"Bye-bye! Y'all have a great time. We'll be fine," I said and hoped as we wished our parents good-bye that August morning.
Ben would be going to "work" soon. "Work" is where Ben bundles recycled newspapers and receives a monthly paycheck. He works there from eight to five every day. Paychecks we are as serious to Ben as Santa Claus at Christmastime or Putt-Putt on Jeky ll Island every summer.
I began to fall into Ben's schedule for the first time.
So this was what my parents lived like. I had a new appreciation for them, especially for some of the embarrassing moments I knew they had had with him in restaurants, grocery stores, and even church, to name a few places.
Ben was a constant consideration when planning vacations, retirement, and their daily schedules. But my parents never let me see this burden. They accepted it and never once considered an institution as an alternative. As I was discovering with Ben , there were many times during the day when his infectious grin, ready hug, or silly joke would make me think of what a miracle he was. I began to see just how selfish, childish, and self-centered I had been.
When Ben returned from work each day, we would take a ride in the country, visit our "Mimi," or our put together one of his 100-piece puzzles. Puzzles are one of Ben's talents. He has as many as 200 puzzles that he puts together, takes apart, and pu ts together again. At the end of each success, he makes sure you see the finished product.
Ben's many "rituals" are amazing; it must be contributed to having the mind of a eight year old and being a Culvern: our family is notorious for being ritualistic. (My Dad and his dog also have "rituals.") For Ben, there were rituals to getting up, e ating, and going to bed at night. Beds had to made in Ben's signature method--edges may misaligned, but the covers were smooth. As for eating, nothing was served without mayonnaise on top.
"Ben, what is that noise?" I asked when I heard the noise of the bedtime ritual of raising and lowering the mini-blinds in his room.
"Nothing, Sissy" he answered. "Just me."
Ben took pride in making Mom and Dad's bed every morning and then bringing them in so they could oooh and aaah over the beautiful bed. Then he would grin and tell them how much he loved them. This was a ritual that stopped while they were on vacatio n.
On the last night of our week together, I felt I should say something to Ben about the past. I didn't know if he would really understand.
"You know, I was awfully mean to you when we were little and I'm really sorry."
His lips formed a slight pout and his hurtful eyes came back as he looked at me.
"I know, Sissy."
"You're my brother, and I love you very much--more than anything in this world, okay?"
"Okay," he said simply and looked away.
I hugged him hard and quietly cried and felt silly for wanting him to say more. His simple answers fooled me into thinking that he had not really understood. I felt good though, complete, grown up--yeah, I had grown up. I would no longer be embarra ssed to be seen with him or to tell anyone about him. He was my brother, and I was his Sissy.
The next morning, we got up and waited for Mom and Dad to come home. After breakfast I went to clean my room, and Ben was finishing up making my bed.
"See?" he said, proud of doing such an unselfish, simple, loving act for me.
"Wow, Ben. I love it. That's the most beautiful bed I've ever seen!"
He laughed and came around the bed to hug me.
"I love you, Sissy."
"I love you too, Ben."