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Friday, December 25, 2009
JOSH WINHELD, z”l
Family and Friends of Josh:
On Friday night, Jews around the world will light their menorahs and inaugurate the holiday of Hanukkah. It is the story of a miracle, of a little vial of oil which should have burned briefly and then gone out but instead burned for 8 full days. We call Hanukkah our ‘festival of lights’.
Josh Winheld was a modern miracle. His light of life burned well beyond any of the medical predictions at the beginning of his journey with muscular dystrophy. His light of life burned brighter and warmer than anyone could have imagined. His courage, his strength, his compassion, his intelligence, his decency…..lit the light of hope for countless families of people in wheelchairs ……and all along, like in the story of Hanukkah, his light of hope did not diminish, but grew stronger and stronger everyday.
In the Talmud, the rabbis asked the question: why don’t we begin Hanukkah with all 8candles lit and take one away everyday to symbolize the diminishing supply of oil? Their answer: with respect to sacred matters and matters of hope and faith, we only increase and never decrease.
Josh Winheld labored to increase hope, light, love and courage his entire life. He never diminished hope or strength in anyone. He was a “nes gadol,” (a “great miracle” in our midst) who quietly and persistently worked and lived the best way he could for himself, his family and humanity. What Josh accomplished in his 31 years was nothing short of miraculous and as with the miracle of Hanukkah, we will forever remember, preserve and amplify the light Josh brought into our lives and our world.
Josh was born on March 4, 1978 on a snowy day in Elkins Park Hospital, the first of the three children born to Linda and Michael Winheld. The Winhelds are an exceptionally close family who had an exceptionally big challenge to meet in life and met it with exceptional courage, grace and love.
When Josh’s sister Amy was born, Josh was brought to see her in the hospital nursery and promptly asked if he could bring a different baby home. The reality is, nobody in the Winheld family ever wanted to trade places with anybody else.
When Josh’s sister Stephanie entered elementary school, and looked around at the other kids and their families, it dawned her for the first time that everyone didn’t have a brother in a wheelchair.
The reality is that very few of us have a brother like Josh, not because he was in a chair, but because he knew how to navigate life with grace and with a smile. And, sadly, not everyone in a wheelchair has a family like the Winhelds who can instill the inner confidence all of us need to travel through life whether in a chair or on two feet.
Josh was diagnosed with Duchenne Muscular Dystrophy at age 4 and by age 10 needed a wheelchair to get around or as Josh put, “I became the first person in my class to drive.” He went to public school here in Cheltenham, gently challenging the school system to learn to better accommodate the handicapped as he went his way. He also attended religious school here at KI where he became a Bar Mitzvah in April, 1991 and was later confirmed. He went on to graduate from the Isaac Mayer Wise Program at Gratz College. He was determined to do everything kids do, and at the same time become expert in his medical condition, and ultimately an advocate for people in chairs.
Josh could do a lot of things. He watched the cooking channel and then directed his helpers in the kitchen. He made a mean pickle. He convened an annual “cousins dinner”. He not only followed sports from the comfort of his parents’ den but went to the great stadiums of this country and Canada - Chicago, Toronto, New York, Pittsburgh, Baltimore , Atlanta, Boston and beyond. He even went to spring training. When the Phillies won the world series, not only did he go to the parade, he managed to talk a stranger into getting him into a second floor office in City Hall so he could see his heroes on Broad Street.
Josh attended Temple University where he earned a BA in journalism and then started his Masters Program there in Urban Planning. It was at about this time that I personally met Josh. When I accepted the position of senior rabbi here at KI, a number of people came to me and told me about Josh and said that I needed to be ready to provide pastoral support to Josh and his family. Josh’s dad, Michael, was actually the only person at KI I knew at the time. Michael and I played softball together on a travel team at Camp Harlam for several summers almost 40 years ago. Michael was on third and I was on first. It was a good time.
What I wasn’t prepared for was to meet a really “nice guy,” Mr. Josh Winheld, who seemed to know everything there was to know about sports, history, politics and a few other things to boot. I wasn’t prepared to meet a young man in a wheel chair who was always pleasant, polite and ready to greet and speak with me, whenever I happened to see him. Nor was I prepared for a guy in a chair who could do a really quick 270 degree turn and speed back to his keyboard in his room when our discussion was done, so he could get back to his work.
Josh became a personal source of inspiration to me on more than one occasion and I’m sure many of you have your own versions of Josh stories of this nature. When my youngest child was admitted to Children's Hospital into a unit he had been in, Josh made it his business to get in his van and be brought directly to Chana’s floor and offer his services to be her pathfinder there. “I know everybody here,” he told her, “if you have any questions or need anything, ask me!”
On several occasions, Josh not only attended family funerals, including one here at KI, for his grandfather, Bob Rosen, but established himself as a great eulogizer…a young man in a chair with a sense of humor, even at funerals, who delighted in sharing risqué stories with his congregation with perfect timing and a self-effacing laugh.
Because of his condition, Josh thought a great deal about death. His conclusion was to live as fully, as happily, and as productively as possible. Josh and I had numerous discussions and email exchanges about whether he should write a book or finish his masters first. I’m sure he consulted many people. When he made his decision to write his book, he plunged into his work, shielding the contents of his manuscript from just about everyone and produced a magnificent manuscript of 75,000 words with a hands-free computer using only head motions to write his text.
The results: a powerful memoir, Worth the Ride, published by Little Treasure Books. The “book launch”, held in the Rothschild Auditorium at the other end of this building was one of the most powerful events I ever attended. Josh was no ordinary person. His power to help others was manifest in every word he shared that day, and every word he wrote down for posterity in his moving autobiography.
The book was just the beginning. He then initiated an online blog, “Winheld’s World,” lectured at medical schools and talked to conventions of physicians. It was always the same message: respect everybody’s essential humanity, respect them for who they are and respect them for their dreams. Most of all, he wanted to help patients and their families know what to expect about life in a wheelchair. Strangers from London to San Fransisco, responded to him, trusted him, confided in him, cried to him and depended on him; and he was always there for them.
The Hanukkah menorah has eight regular candles and one helper candle. Josh’s helper candle was lit and held by many people. Josh had many doctors, nurses and aides who cared for him, loved him and respected him. It took many hands to help Josh. He held everyone of those hands with his heart.
Above all, Josh’s family were his helpers: Linda, Michael, Amy and Stephanie provided Josh with everything they could, every day, in every way, without hesitation or qualification. The miracle of love, like the miracle of Hanukkah, is self-replenishing. The well of true devotion never runs dry and is never sealed or unwilling to give of its nurturing water.
The Winheld family will insist, if you ask them, that who Josh was and what he accomplished, all was a function of his spirit. But that spirit was not alone in this world.
His family didn’t do what they had to do; they did much more, by empowering Josh with a unique sense of normalcy and mission in life. Anyone who ever visited the Winheld house on Rowland Avenue saw how Linda cared for her son - selflessly, perfectly, every day, often all night. Anyone who ever sat in their den, saw how Michael held his family together and gave the sense of security they needed to be a regular family with an incredible mission. Anyone who ever saw Josh, Amy and Stephanie together, saw a weave of sibling love as natural and warm as the light of a new summer day.
The other night I had the privilege of talking about Josh with his extended family in the Winheld family room. Here’s what they said about their Josh. He was courageous, generous, inspiring, spiritual, caring, accepting, lovable, intelligent, approachable, and independent. Above all, we agreed, he was a “really nice guy.”
Josh Winheld died peacefully this Saturday, December 5, 2009 on a snowy afternoon in Elkins Park Hospital, 31 years after he had been born in the same place on a snowy day. Snow flakes, like little angels, accompanying him into and from this world.
Now, the light of Josh’s life is extinguished; but the light of his spirit shines on and on in every good deed you do, in every kind word you share, in every tear you will ever dry, in every memory of him you hold in your heart.
Zichrono L’vracha……Josh’s memory is a blessing.
-- Rabbi Lance Sussman, Ph.D. (Josh's rabbi)