I’m a glass-half-full kind of guy, so it was hard for me to admit that my father, who was forgetting things and not acting like himself, wasn’t going to get better.
The moment reality finally hit is burned into my memory: I was 33, sitting with my dad in a small examination room, when the doctor asked him to draw a clock. My 68-year-old father drew two hands inside a circle, slowly but perfectly. Then he drew a third hand … and a fourth … and a fifth, until there were more than a dozen.
This was right after we’d had a completely normal conversation that never would have suggested his inability to complete this seemingly simple exercise. Dad had already been told he had Parkinson’s disease after experiencing some motor issues, but ultimately, his diagnosis was Lewy body dementia — an incurable condition caused by a buildup of small, misfolded protein deposits in brain tissue that afflicts 1.3 million Americans
In the months that followed, the disease took away chunks of my father’s memory, and, ultimately, his life. That was six years ago.
What strikes me, though, looking back, is that his illness never took away my family’s hope, even though it was frustrating to hear the diagnosis and frustrating to learn there was no prominent Michael J. Fox Foundation or Race for the Cure rallying the American public to my father’s cause.
Everyone deserves a little hope, and while we had no illusions that we could fix my father, we settled for trying to make his remaining days as happy and meaningful as they could be. My devoted mother spent nearly every waking hour with him — always with a smile — even after he moved into a nursing home. I lived a couple of hours away, and visited on weekends so we could cheer our favorite football team together. And, just weeks before my father’s death, I had the joy of introducing him to my month-old son, his first grandchild.
I always knew that life is about hope, but I learned the hard way how difficult it can be to keep it alive. That’s what made reading so many of the stories in this edition of TRIBE so inspiring.
Consider the family of Madison Greene, a 3-year-old diagnosed with a crippling neurodegenerative disease so rare that it’s believed she shares it with fewer than 200 people. Her parents are unwilling to accept what doctors told them is inevitable; they don’t care that drug companies say there’s little motive to research such a rare condition. They are now their own fundraising campaign to support research to fight the disease.
As Madison’s father told our writer, Evan Henerson: “I’m not just a glass-is-half-full person. I’m a glass-is-overflowing person. We still hope for the best.”
Then there are people like Dr. Joel Gould, a dentist who has worked with the rich and famous — among them James Earl Jones — but who dedicates much of his time to helping women who have suffered abuse. Volunteering his services through a group called Safe Passage, he literally brings smiles to the faces of domestic abuse victims, giving them self-confidence and hope for a better future in the process.
Cliffside Malibu’s Constance Scharff offers hope of a different kind. Director of addiction research at the famous rehabilitation center, Scharff is now collaborating with a colleague in Israel, where the cultural environment and violent landscape offer unique challenges to those who need help.
Hope is also something that comes to my mind as I write what is, at least for now, my final editor’s column for TRIBE. Following this issue, the magazine is going on hiatus as we reconsider what’s best for the publication, its parent, the Jewish Journal, and you, the reader.
TRIBE has spent a great six years serving the Jewish population in the San Fernando and Conejo valleys and beyond, shining a spotlight on the great people who are making a difference in our community. Now our job is to look for an even better way to serve you and the rest of the Greater Los Angeles area.
I can only hope that the next chapter is as fun as the this one has been. As Tim Robbins’ character says in one of my favorite movies, “The Shawshank Redemption”: “Hope is a good thing, maybe the best of things, and no good thing ever dies.”