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Friday, February 20, 2009

School Dance

"School Dance"

My son, JD, is in the second grade. Each February the PTA
sponsors a Family Night Dance. It's hugely popular with the
kids. JD loves it.
Tonight was the school dance. My mother teaches a class on
Friday nights so my father takes JD to the dance. I usually
go to these kinds of things. Even if I can't hear or see
what is going on, I want to be there so I can be a part of
JD"s life. But I strongly did not want to go to this dance.
I tried to get out of it. I protested that my father can't
sign so he can't communicate with me and that JD will run
off with his friends and only want me when he needs money.
There was simply no reason for me to go. But my mom kept
pushing the issue and then JD insisted he wanted me there.
How could I explain the real reason I didn't want to go to
the dance? How could I tell my parents the truth? It would
hurt them too much. Because the truth was, I didn't want to
go to the dance because of my brother.
Charles is five years older than me. He was a typical big
brother - loving but over protective. He drove me crazy
most of the time.
Charles has the same genetic condition as me, but it
effects his body in different ways. His problems were not
as severe as mine. He was partially blind from Retinitis
Pigmentosa (RP) but could still read print. His hearing was
absolutely normal and he had only the mildest peripheral
nerve problems.
Notice the tense shifts in the above two paragraphs. I
still have no idea how to talk about Charles. he is my
brother. He was my brother. It is so confusing.
You would think, because he was so much less disabled than
me, that life would be easier for Charles. It wasn't. He
had a much harder time coping with his limitations. Maybe
what happened to me scared him. Maybe he thought he could
go completely deaf-blind within a matter of weeks. Maybe he
was afraid he'd lose the ability to walk or feeling in his
hands. Or maybe he felt guilty because I was so much more
disabled. I really don't know.
Charles was difficult to deal with. He was tense and high
strung. He was pushy and demanding. He wanted to help but
he drove everyone crazy. His mental state was hard to deal
with. I loved my brother but I couldn't handle him for very
long without getting annoyed and frustrated.
Two years ago, we went to the school dance together. Of
course, JD ran off with his friends and my father sat down
somewhere. Charles could sign and he was trying to
entertain me. I was already in a bad mood that day. I
didn't want him pestering me. He tried three times to get
me to dance but I refused. I just wanted him to leave me
alone.
Six months later, Charles took an intentional overdose of
prescription medicine. He died one week before his 39th
birthday.
Now here I am, terrified to attend a school dance. I am
consumed with guilt. If only I had been nicer to him. If
only I had been more patient. If only I had tried harder to
understand him. If only I had danced with him...
If I had danced with him, he would have known I cared. He
would have known I loved him. He would have known I needed
him. And he would have known that his suicide would
destroy me.
We can't go back. We can't change the past. How can I ever
attend that dance again? How can I face Charles' ghost?
Here's the thing about life.... You have two basic choices.
You can face your demons or you can give up. Charles,
gave up in the ultimate sense of the word. I'm not charles
and I never was.
My son wanted me at the dance. JD wanted his mother there,
and so I had to go. I took a deep breath and tried to push
the panic away. I swallowed my sadness. I walked into that
school. I heard the boom of the music with my CI. I felt
the vibration of it too. And I told Charles I was sorry.
I'm sorry for what I did to him and I'm sorry for the pain
he must have felt. But life goes on, and so I have to go on
with it.
And I was right about something else. JD only wanted me
when he needed money. some things never change.

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