Through the night of Parkinson’s disease, Debbie Shapiro casts a glow of quiet strength

As told to Rivka Streicher by Debbie Shapiro

I’ve always been a woman of the sun; strong, bright, warm, positive. I grew up in San Francisco and made aliyah in 1971. I arrived at BJJ, before it was even called that, when it was being constructed in what people thought was a desert — now the center of Sorotzkin. In my second year there, Rebbetzin David took over the program, teaching us so much Torah.

I was part of the coming of age of this fledgling country of ours. As a young woman, I was involved in the Yom Kippur war effort, distributing food and clothing to the soldiers.

I wrote and wrote. My husband and I raised a large family in Ramot. I had the sun in me; I worked hard, I shone brightly.

We later moved to the Shmuel Hanavi neighborhood. I got busy with the grandchildren. I spoke in English and Hebrew to crowds and schools. I volunteered. And even when I received a life-altering diagnosis, I opened an organization for fellow-strugglers, and represented my country around the world.

I was the sun.

But maybe we are, all of us, both sun and moon.

Maybe there’s a time that we need not shine so brightly and fiercely for others, but take just the right amount of light we need to glow ourselves?

This is a reflective piece, ten years into the night of Parkinson’s, on finding the moon — knowing that the sun is slowly setting….

2014

MY big 60th was coming up, and I noticed I was having trouble with my balance. I had to think about walking, about how to place my feet in order to walk normally.

“I want you to go see a doctor,” my husband said, when he noticed me grab on to something to maintain balance.

“I’ll go when I’m ready,” I said.

I wasn’t yet ready to hear what I expected it would be.

When I finally went to see a doctor, the cerebral part of me knew what he’d say, but when he pronounced the diagnosis as Parkinson’s, I burst into tears. Somewhere I’d been holding out for mercy. A part of me hadn’t believed. And now here it was, this decree of degenerative disease handed to me before my big birthday.

“How long until the disease progresses?” I asked the doctor.

“It really depends person to person,” he said. “They say if you’ve met one person with Parkinson’s you’ve met one person with Parkinson’s.”

I laughed shortly.

“It always develops differently. The only thing that’s been proven to help is physical exercise.”

I walked home in a daze, information ricocheting in my brain.

Parkinson’s means that dopamine receptors die.

Complex physical exercises create new circuits which do contain dopamine. But even that is like going up the down escalator.

All executive functions are affected.

I’d already seen some of that for myself. When I didn’t explicitly think about it, my walking wasn’t okay, or my voice would go quiet. This is what I knew: I’d have to go from automatic to manual. I’d have to become intentional about everything I did. With Parkinson’s there’s no auto, no multitasking. It has to be one thing at a time, with intense focus, or I’d walk funny or trip or saliva would pool in my mouth.

A new life, a harder life…. Save me, G-d.