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Hacktreks Travel

Hacktreks 2

First Chapters

The Gift
Bob Orabona
'All that he taught me in his short lifetime would take me almost my entire lifetime to understand'.

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 hand’s 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 brother’s 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 Ronnie’s 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 book’s open surface.

I still have and treasure that dictionary – signed inside with my brother’s 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 once again.

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 this:
"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."
How beautiful!
My brother died July 17, 1966. My memory of him and my love for him, of course, live on.
© Bob Orabona 2003


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