As Jews the world over enter a new year, we pray for good health and a long life. How lucky many of us are to have the blessings of healthy children and grandchildren.
Yet not all of us are so fortunate. Illness, poverty and desolation are sometimes our fellow travellers, and how we deal with pain helps define us as human beings.
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 Schwartz is still a lucky guy.
You see, Jacob, 19, has so much going for him. His parents, Ellen and Jeff, are endearing optimists who have given him much, but they’ve also learned so much from him. Together, the family is a true reflection of both strength and vision. They’ve never seen Canavan as a disease. Instead, they have looked for ways to transform Jacob’s plight into initiatives that gives meaning to Jacob’s challenges.
Ellen is very much the glue that binds this extraordinary family together. 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 dealing with similar challenges.
Without One Word Spoken is Ellen’s latest contribution to love, life and the human experience. By its title, her previous book, Lessons from Jacob: A Disabled Son Teaches His Mother about Courage, Hope and the Joy of Living Each Day to the Fullest, tells us all we need to know. Ellen has taken her own transformative experience of being a parent to Jacob and used it to teach us all valuable life lessons.
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Her new book is full of compassion, humour, angst and humanity. It’s odd to read it and cry one moment, then laugh out loud the next. To be sure, it’s a difficult read, but it’s a vital one for anyone who treasures 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 that comes inexorably with Jacob’s falling health, we learn valuable lessons. Ellen explains: “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 and an understanding that deep in our own souls potentially lies the strength we need to take on menacing dragons.
But perhaps the passage that best gave me a sense of Jacob was one about a drive in the country that Ellen once took with Jacob and her younger son Ben.
On that carefree afternoon, singing as they drove, Ellen and Ben suddenly heard a bang in the back seat. They looked in the rearview mirror and saw Jake’s wheelchair upended. They fearfully pulled over to the side of the road.
“Jake!” Ellen shouted.
“My mind was spinning. Panic was caught in my throat, rising in my chest. I had no words,” Ellen writes.
“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?’”
This book is my Rosh Hashanah gift to readers. Read it. It will change your lives.