This is the time of the year that Jews around the world welcome the New year and reflect on the year just ended. It is common at this time to wish friends and neighbours a “shana tova and long life”.
Sadly, however, illness, poverty, desolation are sometimes our fellow travelers and the manner in which we deal with pain helps define us as human beings.
Jacob Schwartz is a lucky 19-year-old. Though he was diagnosed at birth with Canavan Disease, a usually fatal illness that targets the central nervous system virtually robbing its victims of most basic human functions such as sight, speech, cognitive abilities and mobility, Jacob is still a lucky guy and in his own way, Jacob embraces the idea of “difference” as a way to better learn and understand; an ideal that is part of the Mosaic Institute credo.
You see, Jacob has so much going for him. His parents, Ellen and Jeff, are endearing optimists who have given Jacob much but have also learned so much from him. Together, the family is a true reflection of both strength and vision. They have never seen Canavan as a “disease”. Instead they have looked for ways to transform Jacob’s plight into initiatives that gives Jacob’s challenges meaning.
Ellen Schwartz is very much the glue that binds this extraordinary family. Indeed, Jeff, in a truly heartfelt passage in Ellen’s latest book Without One Word Spoken explains that Ellen is a perpetual source of inspiration. This is not hard to grasp. Ellen has become very much a beacon of light not just for her family but others suffering with similar issues.
Without One Word Spoken is Ellen’s latest contribution to love, life and the human experience. Two previous books, A Disabled Son Teaches His Mother Courage and Hope and Joy of Living Each Day to the Fullest, by their very titles tell us all we need to know. Ellen has taken her own transformative experience in being a parent to Jacob and used it to teach us all a valuable life’s lesson.
This is a book of rare compassion filled with humour, angst and humanity. It is odd to be reading this book crying at one moment and laughing out loud the next. It is to be sure a difficult read but it’s a vital read for all who treasure family.
As you can imagine, life with Jacob is not easy. Frustration and emotional pain flow out of each page. Yet it is uplifting and inspiring despite – or maybe because of – the pain. From believing in miracles, which Ellen embraces in the very first line of the book, to accepting the inevitability of loss coming inexorably with Jacob’s falling health, we learn. Explains Ellen, “Instead of harping on the sadness of Jacob’s decline, we consciously trained our minds to enjoy every minute with him.”
Yes: Jacob’s life with his family dwarfs many of our own concerns. Yet it also gives us a real sense of hope; an understanding that deep in our own souls potentially lies the strength we need to take on menacing demons.
But perhaps the passage that best gave me a sense of Jacob was a drive in the country that Ellen was taking with her younger son Ben and Jacob. It was a care- free afternoon, singing as they were driving in the country. Ellen and Ben suddenly hear a bang in the back seat and looking in the rear view mirror they see Jake’s wheel chair upended. They fearfully pull over to the road side:
“Jake!” I shouted. “Jake!”
… My mind was spinning. Panic was caught in my throat, rising in my chest. I had no words.
That’s when I looked directly into Jake’s face and I will never forget what I saw. Even upside down, it was very clear: Jake was smiling. It was a bright, delighted smile, the kind of childish grin that says, “Now that was a lot of fun. Can we do it again?” There was no doubt about it. This boy loved his ride.”
Jacob’s life is indeed a journey fraught with joyous peaks and sometimes desperate valleys. Yet Ellen’s choice to share her family’s life with us is a true triumph of the human spirit.
To all who celebrate the Jewish New year I wish you a “Shana Tova” and for the upcoming Day of Atonement (Yom Kippur) a G’mar Chatima Tova, an easy fast.
(A version of this story appeared earlier this month in the Canadian Jewish News)
Bernie M. Farber is Executive Director of The Mosaic Institute. He is a native of Ottawa and a graduate of Carleton University. His long-spanning career in the not-for-profit sector includes the role of CEO of the Canadian Jewish Congress (2005-2011) where he spearheaded multiple inter-faith initiatives and dialogues among diaspora groups in Canada including Rwandan genocide survivors and support for the Roma community. Most recently, Bernie has served as Senior Vice President of Gemini Power Corporation where he has been working in partnership with First Nations peoples towards economic development and community self-reliance in a way that respects both the environment and First Nations’ traditional values. Bernie is a recipient of the 125th Anniversary of the Confederation of Canada Medal, the Zaionz Award for Jewish Communal Service, the Queen’s Diamond Jubilee Medal, and the St John Provincial Commendation.
“Bernie’s View” is Bernie’s regular contribution to the Mosaic Institute blog. We hope you are stimulated and challenged; and we look forward to your comments in the Mosaic manner.