Life is a parable. From what we see, we know that which cannot be seen. From what we live, we know things beyond this life.

My mother is suffering from PSP—progressive supranuclear palsy, a rare illness similar to Parkinson’s, but with some significant differences. For one, levodopa is useless. But as in Parkinson’s, her muscles are palsied, her face is most often vacuously frozen, she can no longer walk or sit up, she can no longer speak other than a grunt or a whine, she has surrendered to her conditions and refuses therapy, and she rarely, oh so rarely can smile—and when she does, it brings her agonizing pain.

And yet her mind is all there. All of it. A mind, heart and soul stuck in a rigid box instead of a body.

My mother spent her early years in Bangalore, India, where she studied at a British private school. I suppose it was from there that she adopted the elegant air of the Brahmin elite and the British aristocracy. Perhaps the most striking image of the mother of my youth: a most distinguished and beautiful woman in all the glory of her elegance standing in the foyer of Vancouver’s Queen Elizabeth Theatre, awaiting the performance of the Royal Ballet, adorned in her rubies and a sari, a gift given her by an Indian princess who was charmed by my mother’s graceful dancing.

Today, she is attended to by a stream of helpers. Someone needs to be there 24/7, otherwise she might try to get up and fall. Of course, helper number one and grand conductor is my dad. At 88, he works out every day. Because, I quote, “I need to stay strong enough to pick up your mother if she falls.”

So Two beings suspended in life by love.my dad is staying alive and healthy because he has to take care of his wife. And my mother keeps plugging along, well past all the experts’ prognoses, because she knows that my dad is living for her. Two beings suspended in life by love.

The Caress

It doesn’t come easy to call home. I call on the iPad, my dad puts my mother on camera, and I say, “Hi, Mom!” Then I force myself to blab about whatever I can think of. But there’s no expression to be seen. Maybe a groan. A glazed stare. “I love you, Mom.” Nothing. And Dad says, "Well, I think she’s had enough.”

If she weren’t aware, that would be one thing. But there’s no dementia. Just a still, unresponsive soul locked within.

Visiting is yet harder. The living room, once packed with friends and family—no one was a guest, everyone that entered became a friend—is now outfitted as a hospital room. The steady stream of guests has long been reduced to occasional droplets of visitors, those with too much integrity to forget my mother’s hospitality of the past. Dad is lonely and wants to talk. But I need to talk to Mom, as well.

On one visit, I went out and rented a guitar to play for my mother. As an adolescent, she had pushed for guitar lessons. She figured it would help me get the right girl (it did). That time, she seemed to enjoy the performance. But at the next visit, there was nothing, no hint of a response.

On one visit, I had talked to her about my children and grandchildren. I repeated their names many times. She listened attentively and gently smiled. Next visit, that wasn’t cutting it any more. A cruel reminder of the meaning of the first P in PSP.

Last visit, I was only there for two days. The night before I left, I took my most desperate gambit. I opened up my heart and poured out all it contained. It flowed with the hot intensity of the blood that pumps in my veins.

“Mom,” I said, “everything I have is from you. All these kids and their kids, too. All that I’ve written, it’s from you. You raised me to know that the world is beautiful because the One who made it is beautiful. You taught me to do what I know is right despite what everyone says. You are the one who told me, again and again, that the most beautiful thing in this world is to help another. Everything I have, I have from you.”

And And then her hand reached out slowly and stroked my cheek.then her hand reached out carefully and stroked my cheek. She smiled an angelic smile. And she tried hard to hide the pain of that smile.

The next morning I flew back home. But not before I said my morning prayers. In those prayers, I was angry. My mother had taught me that Abraham, our father, was great because he argued with G‑d for justice. Now I took that role, to argue on her behalf.

How many strangers to the city had my mother housed and fed? How many were welcomed and introduced to the Jewish community of Vancouver at our home? Is this justice, for G‑d to now quieten her mouth and cut her off from those people, to transfigure her once supple body to the shell of a crustacean, to imprison her in a tower from which the bravest knight in armor could not redeem her?

Inside, I could hear an answer. We are all divine souls, princes and princesses of light, captured within the crust of human flesh. And G‑d Himself joins us, His presence frozen within His own creation. The Shechinah, the collective soul of humanity, is in exile. We are all my mother.

An Inside-Out World

It’s one of the most bewildering things about this world: Viewed from above, our planet is a place of staggering beauty. Look back from a spaceship, or just climb a mountain, and you can’t help but feel a sense of the transcendent—something vast that’s there in front of you, and yet entirely intangible. A magnificent harmony that renders us all very small, yet finds a sacred place for all things.

But From the outside, a world of staggering beauty. But from the inside, it can be the pits.from inside, the same world can really be the pits. And an awful lot of people spend an awful lot of their life there in those awful pits.

How can that be? How can something so magnificent from the outside end up such a bitter disappointment from the inside?

Or maybe we’ve got it all wrong. Maybe it’s not a case of deceptive packaging. Maybe the view from above provides a peek of what’s really inside. And maybe there’s something about our lives that is just not letting that beauty shine through to the outside.

That’s what we mean when we say the Shechinah is in exile. The Shechinah is that transcendent beauty some of us call G‑d, just not all of G‑d. It is the us that is beyond us. It is the essence of all things, the vitality that sustains all life, propels every electron and calls every photon into being, that conducts all things in harmonious union and endows each cell and particle with unfathomable mystery.

Yet in this grand symphony, humanity plays out of key. The feet aren’t dancing to the music. There is a princess inside the palace, but she languishes in captivity. Palsied and atrophied, the journey of the human soul through life becomes G‑d’s prison. Yes, He who calls the entire universe into existence from the void has willfully, deliberately tied up His soul in the fetters of human acrimony.

Obviously, with purpose. Obviously, so that we will do something to discover Him there.

So what do we do?

As my parents do, we sustain one another with love. We ignore the dissonance and embrace beauty. Do, just do whatever good you can. Once we harmonize, perhaps we will be able to hear the music playing inside. There is meaning. There is life. Dance to its song.

My mother will heal. Our souls will break through their shells and shine brightly. The Creator’s beauty will glow through every artifact of His magnificent world. His soul will be redeemed along with ours. Two ancient lovers will reunite in eternal youth.

My mother’s sweet caress has yet to leave my face.