he taught me in his short lifetime would take me almost my entire lifetime
My older brother
Ronnie, one of six children in our family, was stricken as a child by
muscular dystrophy. By the age of nine, he was not able to walk or stand,
or even turn his head from side to side. He could move just the fingers
of his hands, his mouth to speak and eat, and his eyes to see. Our mother
cared for him lovingly, twenty-four hours a day while our father worked
hard to support us all.
My brother, each day slowly growing weaker, was to spend the rest of
his life either sitting in his wheelchair or lying on his bed. Yet,
I never heard my brother make a single complaint about his illness.
Not one, "Why me?" Not a single tear of self-pity shed. Neither
did my mother complain of any of it. Between them they shared a secret
I was yet to learn.
Ronnie would play with our dog Duke by rolling a ball off the kitchen
table. He would then give the dog a treat by taking some food into his
left hand and walking the hand fearlessly off the edge of the table.
Unable to control his hands descent, his arm would end up dangling
helplessly by his side while the dog received his reward. I would then
return the ball and my brothers hand to the top of the table,
and the game would begin again.
Baseball was a favorite passion, and sometimes a pastime, of my brother.
Sitting in his wheelchair, he could swing a small wooden bat resting
on one shoulder by using his fingers to pull the bat off the shoulder
and into the path of the ball. Similarly, he could throw a ball by holding
it in his hand placed on top of his head, and then dropping his arm
down. Ronnie was a born Boston Red Sox fan. He attended several home
games in Boston, but each one ended with a losing performance by the
Sox. Knowing that one of her beloved sons was longing to see a Sox victory
in person, our normally kindhearted mother would one day curse the Red
Sox against ever winning another World Series.
One of Ronnies other passions was learning. But being born in
1942 long before disability acts, equal access laws, and curb cuts,
he never attended school. A visiting teacher would come by once a week
to give him lessons and homework. The rest of the week he would read
newspapers and books including his dictionary to educate himself. He
would read his dictionary like any other book. But, unable to hold any
book up or tilt his head down, he had to cast his eyes down to see the
pages. Unable to turn a page with a single simple move, his fingers
delicately walked each page across the books open surface.
I still have and treasure that dictionary signed inside with
my brothers name written by his own hand. For writing was a Sisyphus-like
task for him -- the fingers of his right-hand holding the pen and forming
the shapes of the letters with the fingers of the left pushing the right-hand
across the paper. At the end of the just written line, both his hands
would walk back to the beginning of the next new line to start over
It is not surprising then that what my brother learned and discovered,
he did not write down. But knowingly or not, he taught by example everyone
that knew him. All that he taught me in his short lifetime would take
me almost my entire lifetime to understand.
Eventually my brother became too weak to even breathe. Only 22 years
old, he spent his last days under an oxygen tent in a hospital. His
last words to his family were, "How beautiful!" Perhaps he
was looking into the heavens and could see a new life that awaited him.
But, I believe in his last moments he was looking back on his life and
even then would not complain of it, but only see the beauty of it.
For I believe one of the secrets that my brother never wrote down was
"There is not a single thing more in my life that I could ever
want or need. But, if you will continue to give me the gift of your
love, I will treasure it always."
My brother died July 17, 1966. My memory of him and my love for him,
of course, live on.
© Bob Orabona 2003
all rights reserved