It just occurred to
me that this is my 16th column for Senior Women, and I’ve written
about dolphins and labyrinths, Nancy Drew, tap dancing and earthquakes,
but I’ve never once talked about my brother Jack, the biggest
influence on my life.
Jack has cerebral palsy
and mental retardation because of a mistake made in the hospital
when he was born. We didn’t know about it until he was one and
I was three, but after that, nothing was the same in our house.
The laughter went away. The spontaneity was lost. My mother concentrated
her will and her strength on helping that little boy achieve his
full potential, and my father pretty much played golf and drank
Scotch and sodas when he wasn’t working as an engineer at Bell
Labs.
I was the little girl
in the middle, trying to be very good because I knew that something
had gone really wrong in that house and that it had to do with
my brother. I did well in school, never showed my anger, and taught
my brother to read and write.
Everything was all
right until we moved away from all my friends and a familiar neighborhood
to Baltimore when I was 12. When you’re 12, you want to be like
everybody else, and I had a brother who had mental retardation.
When you’re 12, you want to be pretty and popular. I was very
small and looked about 8, started getting pimples, and my nose
began to grow. And I had a retarded brother. I wish I could tell
you that it didn’t matter that my brother wasn’t like other brothers.
But it did. I used to say, “I don’t want anyone as a friend who
can’t accept my brother.” But I wanted friends desperately, and
many couldn’t accept Jack. Some of the mothers of my new classmates
didn’t want their daughters to come to a house where there was
a retarded boy. My mother loved me, but she had to put Jackie
first.
My reaction was to
escape. I fled to college in Massachusetts when I was 17. That
wasn’t far enough. I went to Paris to live for a year after college.
I came back to New York and met my husband and had two little
girls. I was too busy raising my children to see Jack very much.
We moved to Westchester County, then to Pennsylvania, and back
to New Jersey, and by this time, my parents had put Jack in a
home for retarded adults in Florida. They did that so I wouldn’t
have the burden of taking care of him when they were no longer
here.
I was not a good sister
to my little brother. Then my mother died 10 years ago, and Jack
became my emotional responsibility. I
went down to tell him that mother had died, and he brushed the
tears away with the back of his hand and said, “Who will take
care of her car?” I put my arms around him and said, “I will,
Jack, and I’ll take care of you, too. I’ll come down to Florida
and we’ll go to the beach, and to Disney World and to Sea World.
I’ll call you and send you presents and love you.”
And I have. Each time
I see him, I understand him a little bit better, love him a little
bit more, but I wish I had known him better during all those years
I was too busy. He’s funny and brave and loves jigsaw puzzles
the way I do. He remembers Mom and Dad and each car my father
bought, and the house on Tulip Street in Summit.
Naturally, I have a
lot of guilt about my neglect of Jack, a lot of anger repressed
for so many years, a lot of shame that I couldn’t love him. But
I’ve learned that most siblings of people with disabilities feel
just the way I did and they wrote to me about it after I had articles
published in The New York Times and Good Housekeeping about Jack.
Today, I work with siblings to help them find support groups and
other brothers and sisters to talk to. I am trying to get a definitive
list together of facilities available for their siblings after
their parents are no longer able to take care of them. I write
a column for siblings for an online magazine called I Can (www.icanonline.net).
I wrote a book with my own story woven in with the stories of
100 other siblings and advice from experts.
My brother affected
every aspect of my life, from the kind of husband I chose to the
work I do now. He made me stronger, better able to cope with the
death of my daughter, more compassionate, more tolerant, a better
problem solver than if he hadn’t been my brother.
I’m writing to tell
you all this in case you are feeling alone out there with your
unacceptable feelings about a sibling with mental or physical
problems. It’s O.K. It’s normal. Don’t feel guilty.
If you want to write
to me about this subject or your own personal experiences, I would
love to hear from you.
