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Parkinson’s, My Mother and the Shechinah

Parkinson’s, My Mother and the Shechinah

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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.

Rabbi Tzvi Freeman, a senior editor at Chabad.org, also heads our Ask The Rabbi team. He is the author of Bringing Heaven Down to Earth. To subscribe to regular updates of Rabbi Freeman's writing, visit Freeman Files subscription. FaceBook @RabbiTzviFreeman Periscope @Tzvi_Freeman .
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Dina Leah Albuquerque & Maine June 23, 2016

I'm crying thinking of my own mother's situation Your words hit me right in my soul. I just visited my mom who due to strokes has dementia and limited movement. She is now in a wheelchair after so many falls. My younger sister was supposed to care for mom since dad at 88 cannot lift her. But, instead, sister put mom in a memory facility where strangers care for her. Dad is still home & doing his own thing with atrial fibrillation.
Visiting mom, when she woke & saw me, she burst out crying. I hadn't seen her in a few months. It's good she recognized me since sister never told anyone I exist.

I'm the oldest, & live out of state, but people questioned me? Did I needed my birth certificate. Yes, I'm her daughter! Don't you see her recognize me? Only 1 photo of me with my husband. None of my son, her grandson. Before saying goodbye, my husband sang a love song to my mom a love song. Mom's face lit up. Sent mom photos: 1 taken with her there, & 1 of my son & me. I want her to remember us. Don't know when I'll see her again. Reply

Gary Wasserman ST PETERSBURG November 1, 2015

Rabbi Tzvi
I read your column with tears in my eyes. You were there for me when I came to Thornhill for my mom and dad's illnesses and funerals, and I wish I could be there for you now during this very painful part of life. I can only offer my prayers and good wishes. Chazak. With love from one jew to another. Reply

Debbie Ohio October 31, 2015

How beautiful.... Reply

Anonymous Alabama October 30, 2015

Thank you! The way you write makes me cry, but I think that even tears are a part of that song and dance of life you are talking about...I can only imagine how beautiful your mother is! Reply

Anonymous October 30, 2015

I don't know if it's proper, but if you feel you can share your mother's Hebrew name I'm sure she would receive many prayers for healing from around the world. Reply

Chanoch Miami Beach October 30, 2015

Mother God bless you and keep you in his name
God shine ligt on you and give you grace
God show you his face and give you peace.
There is lots of love coming your way,, receive it with joy. Reply

B.Hooper October 30, 2015

Beautiful............there are no other words to describe this article. Reply

sunil subba India October 29, 2015

h It's a golden opportunity to serve parents and look after them for all the guidance and love which they have provided.At times there's no thing we can do but to be in presence with them and to pray for them.Just to be with them when there are no words to speak is already a bonding with the soul to soul communion. Reply

Gila Ocala October 29, 2015

My heart aches for you and yet in all the pain hope lives. In our hearts by loving and caring the light shines, not diminished. Behind a closed door a candle burns, because the door is closed and we do not see it; does it not shine? It does because our hearts feel it.
I want to tell you what an absolute inspiration you are. Please keep shining. Reply

Craig Hamilton Sandwich, MA October 29, 2015

“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?” – What a blessing of a story. It is good to be proud of parents, especially for their deeds. Reply

Golda Brooklyn October 29, 2015

Whoa...such impacting words...and moreover such a beautiful expression of love! Reply

Anonymous Vicksburg October 29, 2015

Love! Rabbi, love you and your beautiful family! Next time you see your Mom - tell her that Lena from Mississipii loves her.
Baruch Hashem Reply

K. Toronto October 29, 2015

Thank you for sharing this personal journey; I'm going to respectfully offer some advice ... Envision your mother in her strength ... tell her you love her in this etheric field, the eternal flame of Esh Yah Hod ...

Also, many times the use of essential oils for the loved ones is v. useful; Rosemary and Juniper come to mind, Blue spruce oil - native to British Columbia ... this would be good for anyone who comes into the space of someone traversing the gap, the in-between space of the living and the 'fading' cosmic flame of His Love. Especially for your father who needs his wake-ful-ness & strength at this time. (And for yourself).

She will live forever i feel, for her beautiful deeds.
May you have peace, and contentment in the greater knowing of this Reality.

Shalom. :) Reply

Brenda October 29, 2015

Thanks for writing this Rabbi Tzvi
Your words touched me and tears are pouring. I am dealing with emotional grief after discovering my husband's seven years of adultery in our 24 year marriage. I have been struggling with what you said "an awful lot of people spend an awful lot of their life in the pits" and "how can something so magnificent on the outside be such a disappointment on the inside". The love you parents have for each other is truly beautiful. I pray that my children will feel about me the way you feel about your mother - that everything you have you have from her. What a magnificent tribute to your mother! I pray for you and and for everyone struggling Reply

Anonymous Los Angeles October 26, 2015

Wow Rabbi Tzvi. This is very deep. You should be angry at Hashem for allowing himself to hide his face for this long. Someone like your mother just does chesed. Clearly, this world is not based on divine fairness. Reply

Bracha Peled Eretz Yisrael October 25, 2015

Rabbi Tzvi, we go back a very long way!!! Your mother, may she have a 'refuah shleimah' was the Sara Emainu of Vancouver and welcomed every Jew into her home with hachnasas orchim beyond compare. We were privileged to have experienced this phenomenon endless times! May Hashem send her a complete refuah and strength to your father to continue his messirus nefesh in taking care of his beloved wife! What a moving expression of the soul.... besoros tovos, Micha & Bracha Peled Reply

Kay Texas October 24, 2015

Hi, Rabbi--
I'm not Jewish--actually Lutheran--but I appreciate your understanding of our Lord's supreme will, and I know that God does not allow anything to enter our lives that is not able to glorify Him by drawing us into deeper intimacy with Him and revealing His glory. My prayer is that your mother may find contentment. Reply

Melanie C Miller labelle, Florida via chabadnaples.com October 23, 2015

beautiful I am a nurse and parkinsons and alzheimers is so hard on the family, This story reminds me of all the love and compassion the elderly need and deserve. My love in the 25 years I have been a nurse is definately with the elderly. They touch your heart in ways some people will never experience, Thank you for sharing. Reply

Anonymous netherlands October 21, 2015

Touched by your words.. tears are falling, can feel the truth in your words:
"... 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."

Malgré tout I Try to keep relying on"...The us that is beyond us.." Reply

Anonymous Huixquilucan October 20, 2015

My husband has Parkinson. He was once young and so full of life. It's been so hard reading about your mother. But also a great comfort to see that one can look at the rainbow in the middle of the storm. I have lupus, but have been struggling with it because I know I will have to be there for him. I love you. Reply

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