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Thursday, December 24, 2009
When I told my Mother Josh had passed away, part of her reaction was that “Josh had COURAGE.” When she said that, I paused because – to me – COURAGE – implied action in the face of fear. But that was not Josh. Nothing he did or accomplished was motivated by fear. But to be fair to Mom, I Googled the word and found these definitions:
·Courage: derived from the 14th Century French word for Heart
·Mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.
·“That quality of mind which enables one to encounter danger and difficulties with firmness, or without fear, or fainting of heart; valor; boldness; resolution.”
This sounds very much like the Josh we all knew and loved.
I would also add the words from the gift made of Scrabble letters he hung proudly on his bedroom wall: Humor, Scholar, Journalist, Kind, Reader, Clever, Historian, and most important of all: Philly Fan.
From his early days to the end of his life, Josh knew he had no control over the physical aspects of his disease, but he understood the power he had to keep the disease from defining the person he would be.
When Josh was 8 or 9, he decided to start reading the World Book Encyclopedia. When Michael told me, I looked up Muscular Dystrophy, which was essentially defined as a “degenerative muscular disease typically resulting in death by adolescence or early teen years.”
I was devastated to think how horrible it must have been for Josh to read something like this. But, as he explained in his book, things “like this” only happened to “sick” people, and he was not sick. He just had trouble walking.
When he went from crutches to a wheelchair, he viewed this not as a progression of his disease, but as a moment of “liberation.” Finally, he could effortlessly move about without the fear of falling, the risk of injury, and physical exhaustion.
Throughout his academic career, he curried no favors and sought no special treatment. He wanted to be where he was because of who he was.
As an adult, Josh wrote in his book about the adjustments he had to make after his surgery for the ventilator and G-tube: “There was no way that a nurse was going to stand outside the bathroom door….After five minutes, she could knock … to ask if I was finished. I didn’t care if I stopped breathing or had a heart attack on the toilet. There was a limit to which I would allow my disease to dictate how I lived.”
Josh’s positive self-image and sense of worth gave him the COURAGE, CONFIDENCE, HUMILITY, AND EMPATHY to bare his deepest feelings so that others who followed behind him would know they were not alone.
Josh was 9 years old when he drew this card for me after I broke my leg in a skiing accident. What struck me most was how someone in a wheelchair was feeling sorry for someone who could get better. This simple card from a child lifted my spirits and helped me through my recovery. This ability to connect with people was one of Josh’s special gifts that only got better through the years.
I leave to the Rabbis the imponderables of Judaism. But suffice it to say, I believe in what I call “Cosmic Coincidences.” Josh died in the hospital where he was born. It was cold and snowy when he was born; it was cold and snowy when he died.
My Bar Mitzvah torah portion dealt with God’s blessing and Abraham getting his new name. The torah portion this week talks about Abraham’s grandson, Jacob, and Jacob’s dream the night before he faces his brother Esau. At the end of the dream, as dawn breaks, Jacob gets his blessing and a new name: Israel.
For almost 32 years, more than twice as long as those of us who loved him had hoped for, Josh wrestled his Angel on Earth and did a hell of a job. I believe he accomplished what God sent him to do and then blessed him and brought him home.
Amy and Steph, your parents put Josh’s name in yours for good reason. Although we lay to rest the vessel, his soul and spirit lives on as his name intertwined with yours takes on new meaning. He will always be with you. He will always be your
Big Brother. He will always tell you the right thing to do, even if you don’t want his advice.
I can imagine Josh wheeling up to the Guard House at the Pearly Gates being asked, “Well Josh, was it worth the ride to get here?” Besides trying to sell another copy of his book, he answers in his own words:
“It is truly the quality of my life, not its duration that makes me most fortunate…
I have had the opportunity to spend more time with my family, including the time to watch my little sister grow up. I am surrounded by caring, dedicated nurses and attendants… I have the respect and admiration of my friends, who have not forgotten me. And, if anything, I believe … my experiences haven given me a greater appreciation for life. My life may not be perfect, but it has definitely been worth the ride.”
How many of us will be as blessed at our life’s end to feel the same?
Josh will be sorely missed. But he will never be forgotten. He leaves us all his legacy of the power of the human spirit and the challenge to do good and accomplish great things.
-- Howard Markman (Josh's "Uncle" Howie)