How To Heal Parkinson’s
Ladies ‘n gents don’t tell a soul, but fact is, you can’t do a hell of a lot about healing Parkinson’s. We, bourgeois in the Flaubertian sense, we’re so used to making demands on reality when something isn’t going right, that we don’t take no for an answer. Saul Bellow writes somewhere that being bourgeois means figuring out, as you slip and fall on a neighbor’s icy sidewalk, the insurance money you’ll win. But Parkinson’s is not like a twisted ankle or a broken window or a leaky pipe. No, indeed, ladies and gents, it’s not. “I’m going to fight this; I’m going to fix this.” A joke.
We speak of illness through the metaphor of war: the battle against cancer. “So sorry you have a health challenge,” a friend wrote.
Some challenge! Like unarmed slaves “challenging” wild beasts in the arena.
The trap is, the joke is, that while it’s foolish to think you’re going to beat a sickness like Parkinson’s, you’re just not going to give up trying.
So I spend my money on micronutrients and a treadmill. I remember to stand straight and practice my balance. Mornings, I pray. Doctors don’t know everything. I nap. Waking, I hear the voices from another room—those friendly baritone voices in my head. I pretend to imagine they’re discussing my case.
What, then, I imagine them asking, is to be done?
Waking, especially from my nap in the afternoon, I’m aware of my whole body trembling. Opening my eyes, I see black dots hovering in the middle of the air. I’m more exhausted getting up than when I lay down—I could fall right back to sleep. But then how will I sleep tonight?
What can I do to give me back my energy? Am I worse than I was yesterday? Which pills should I take? I monitor my exhaustion, though I know what a mistake this is. “Monitor” is cognate with “admonish.” “Admonition.” A warning. But why warn when you can’t change anything?
What’s to be done? What’s best is not to do. Do, and you’re undone, symptoms intensified.
I learned as a child to exhibit my pains and illnesses to my mother. Learned from my mother to monitor, to groan and sigh. As a child I developed stomach aches, headaches. I brought them to her. I learned to pay attention to my pain. I wanted her attention, too, and then became angry when she gave it.
As I’m remembering our talk, I must have been eight or nine years old. But we always talked like this.
“Why,” my mother said, “should a boy like you have a headache? My son? Why should my son have a headache?” She tried out remedies on me and she asked, did this help? Did that help? Until I said I was feeling better, she didn’t stop. I wanted her to stop; I didn’t want her to stop.
She suffered and taught me to express my suffering; she drank boiled water without tea to ease the gas in her stomach. The heartburn. She gave herself enemas. She sighed. “As God is my witness . . . you should never know how your mother suffers.”
“Stop, stop! I do know. You never stop telling me.”
“Don’t worry. I’ll stop soon enough. You want me to stop? Should I stop for good?”
I shook my head, parodying the way she shook her head. She shut her eyes.
If I asked, “What’s the matter, Mom? What’s hurting?” She’d sigh: “The matter? Why, nothing is the matter. Isn’t that what you think? Everything is sweet. My life is so sweet.”
But if I didn’t ask, she’d say, “You’re all I’ve got in this world? Don’t you know that? And you don’t ask how your mother is? Don’t you want to know?”
“Of course I want to know.”
“You think your mother is a complainer.”
I laughed. “Well, don’t you complain a lot?”
She ignored this. “I’ve got a swell marriage. Simply swell. My husband goes out to California for months and months to take care of his father. Who wouldn’t complain?”
“You’re right. But he’s back now. Grandpa’s dead.”
“You think he’s such a pleasure when he’s home? Let me tell you a secret. This is between us. Your father means well, but perhaps—just perhaps—he married the wrong woman. As perhaps—just perhaps—I married the wrong man. I should have stayed in the business. That’s the truth. In fashion. In haut couture. If I called Old Man Bonwit on the phone this morning, he’d ask me to come back and work for him.”
“Well, why don’t you?”
“You don’t think so. You think I couldn’t?”
“I didn’t mean that. Mom? Why don’t you?”
“The fashions have passed me by a long time ago, my darling.” She sighed and nodded, nodded and sighed. “And am I strong enough to take a position? You know what that entails? Besides, don’t I have to take care of you and your father?”
What would it mean—to stop trying to fix myself? To let go and simply live? Why is it so seductive to monitor my symptoms when I know it doesn’t help? Would it be like giving up my mother? So? Isn’t it time, for godsakes? Don’t I, at least, need to give up my mother’s strategy?
But that’s wrong; it wasn’t really a strategy. She wasn’t trying to end her suffering. She needed to feel it. Or else she would have gone crazy. She needed me to feel it.
When, twenty-five years ago, I began to light candles on Friday nights, I remembered my mother turning to the shelf in our kitchen where she lit candles, turning and murmuring something in Yiddish. But they weren’t Shabbat candles she lit; they were memorial glasses. The glasses would burn all night, all day. We’d use the empties as drinking glasses. My mother grew up in an Orthodox household. How could she not know the difference? And if they really were yahrzeit lights, 24-hour memorial candles, who was she mourning and why only on Friday nights? Was it just a mistake?
She held her hand over her eyes and wept—though on Shabbat we are supposed to be joyous. She was solemn as she nodded at the candles. She never explained. Now I think I understand: she was mourning her lost Jewish family, her sweet childhood, and her lost hopes—mourning her stifled self that once held such promise. Shabbat was the time for her to face irretrievable loss.
If my father came into the kitchen and saw her lighting the candles, he’d slap the air, quick, back and forth, as if to expunge a stench, and say, “What a load of old-fashioned crap.” He was irritated. He was counting the cost of the candles. My mother would turn to me and say, “You hear that? A real Jewish gentleman. What a charming, cultivated man I married.”
“And you,” he snapped. “Ain’t you some charming woman in that dirty house dress of yours.”
But the truth is, she was a charming woman. She had her ways.
I remember this: I must have been nine or ten. We’re sitting near the back on a Madison Avenue bus, coming home from shopping or from the doctor’s. She points up at an office building. Right away I know what’s coming, and it’s embarrassing as hell. I look away.
“Lookh, mein Benny,” she calls out in thick pretend Yiddishe accent, “Lookh at all de big buildinks!”
“Shh, Mom! Please.”
“Vatz de matta? You’s so ashamed by your immigrant modder, de vay she talks?”
Passengers give me dirty looks—or I imagine they do. Your poor mother! Is it possible they don’t know she’s kidding? It’s possible. This is during the war—say 1944. New Yorkers are used to refugees. Me, I can hear the put-on—it’s so obvious. But my mother’s first language was Yiddish; her accent can be as authentic as she wants to make it.
“So, Benny, mein boy, you don’t want be seen vit your immigrant modder who loves you?”
“She’s kidding,” I say loudly to a listening public. “My name isn’t Benny. She’s kidding. We’re Americans.”
No one’s looking our way. It’s time to change for a crosstown bus. My mother says to everyone, in an upper-class British accent with clear articulation, “Lovely weather we’re having. Don’t you agree, Benjamin?”
Look! I can turn myself into an immigrant or a privileged, educated American. Just like that I can invent myself and reinvent myself. And you, my son, can be my audience.
Or this later memory, from when I must have been twelve or thirteen:
Say it’s a morning when I didn’t have school, and she decided to take me shopping downtown. She’d dress up in her Persian wool coat and Persian wool hat, a blue silk scarf at her throat, and she became my elegant, witty mother.
We get into the crowded elevator at Saks Fifth Avenue—the metal inner gate, the outer doors, shut. One glance and I can see in her face what’s coming—I knew her routine of tantalizing the folks in the elevator. She stage whispers, “So. So, there she was, half naked!” Naked I didn’t expect. I’m embarrassed. And amused.
Looking around the crowded elevator to make sure no one’s overhearing, knowing everyone’s overhearing, she says, as if continuing to tell me a story, “. . . So, you know about his luxurious apartment, the duplex at the Beresford. Remember, I took you there? And you’ve heard what a powerful man he is. And you know Isabel. Well, according to Isabel, he told her in his big voice, ‘Time to take off your clothes.’ And, he told her, she’d better listen. Well, she stands at the top of the stairs and begins to take off her fabulous clothes. She’s no prude, that Isabel.”
My mother swivels around to make sure no one’s listening. Ha ha. Everyone’s looking anywhere but at her. “But you can imagine, my boy, how she takes off her clothes. Slowly, half tantalizing him, half holding back, hoping that Charlie gets there.”
By now we’re on the second floor, doors open, doors close. “What happened, Mom?” I ask, collecting myself. “Did Charlie get there?” Now we pass three, we’re up to four. “The doorbell rings. It’s Charlie.” We’re up to six. Men’s clothing, the elevator half full. My mother’s comic timing: As the elevator slows and just as the door opens, she says, “Now he takes out a pistol from an end table and points it . . .” And we walk out of the elevator, while the customers, looking at the elevator ceiling, strain to hear. The elevator door closes, and no one finds out who the powerful rich man is, whom he points his gun at, or whether Isabel finally gets naked. I relax, I let go a laugh.
Now, sixty-five years later, I know who the powerful man of her fantasy is. Not just my uncle, whom she hated with murderous hatred and obsessed over with envy, but the original dream figure—magical avatar of wealth and power and American success: shape of the longing of the immigrant girl.
She couldn’t stand it—not being the great success, the brilliant lady upon whom the lights of New York shone. She thought she’d married a man of wealth and power who could give her the life she demanded. She was so deeply dissatisfied. She lived in the story of the gap between how she wanted to live and how she was actually living.
I could say her rage, unassimilated, exhausted her. But perhaps exhaustion was her unconscious strategy; she learned to fall into exhaustion and pain as a way of handling, quieting, her rage.
She taught me to monitor myself.
Then what’s to do? Can I unlearn? Can I suffer my exhaustion without monitoring it? Can I be like the three-legged dog that makes do—who doesn’t whine, doesn’t focus on the missing limb?
The last few years of her life, while my father became weaker and she sported a cane, my mother’s rage quieted, her exhaustion diminished. They became a peaceful couple. When my wife and I visited, there was no shouting, no shutting and opening windows so the neighbors wouldn’t hear—or would hear. She spoke sweetly to him. “Chuck, dear, would you like a nice sandwich?” He didn’t complain; she didn’t complain. I couldn’t understand. Somehow, she no longer had to feel her terrible dissatisfaction. She was content. The fighting was over.
Then she became a peaceful widow, and she lived another story entirely. “Poor fool,” That’s how she remembered him. But the words were said with tenderness. And when I reminded her that there had been hard times in our life together, she’d say, “What do you mean ‘hard’? I’ve been a happy wife and mother. Yes, there were quarrels, but what married couple doesn’t have their quarrels?”
After my father died, my Uncle Lloyd changed; he became a responsible brother-in-law; he moved my mother into a pretty little apartment on Central Park West, and he paid the rent. Once a week he’d send his chauffeur to take my mother shopping. “It’s wonderful that Lloyd takes care of you,” I said.
“Well—and don’t I deserve it?” She smiled. “But I must say, I must say, he’s been a little bit of all right.” Then she added, “Well—and shouldn’t he be? Your father was as good as gold to him. He was so loyal—such a loyal brother.” She added, “Besides . . . Lloyd knows the kind of woman I am.”
The fighting was over, and with it the self-torture. It was over not because she was defeated. She had declared a truce. No—better than a truce: she pretended to herself that there was no struggle, that there never had been a struggle. She was simply the gracious lady she’d always imagined herself.
What is to be done? Of course. A lesson from my mother: stop fighting the loss. Change the story. Can I eliminate the exhaustion? No. Can I treat it as simply the way things are? Just as I can’t, no matter how hard I try, run a marathon or play in the NFL, can I accept this incapacity? Will it help if I refuse to accept? What’s to do? Maybe no more than tell myself that this exhaustion and all the other joys of Parkinson’s, they’re simply who I am now. Would that be lying?
John J. Clayton has published nine volumes of fiction, both novels and short stories. His collection of interwoven short stories, Minyan, was published in September 2016, his collection Many Seconds into the Future in 2014. Mitzvah Man, his fourth novel, appeared in 2011. A memoir, Parkinson’s Blues, was published September, 2020. Clayton’s stories have appeared in AGNI, Virginia Quarterly Review, TriQuarterly, Sewanee Review, over twenty times in Commentary; in Kerem, Conjunctions, Notre Dame Review, Missouri Review and The Journal. Stories have been published recently in MQR and Missouri Review. Two personal essays have been recently published in Jewish Review of Books. His stories have won prizes in O.Henry Prize Stories, Best American Short Stories, and the Pushcart Prize anthology. His collection Radiance was a finalist for the National Jewish Book Award. Clayton grew up in New York; received his B.A. at Columbia, his M.A. at NYU, his PhD at Indiana. He taught modern literature and fiction writing as professor and then Professor Emeritus at the University of Massachusetts, Amherst. He has also written two books of literary criticism: Saul Bellow: In Defense of Man and Gestures of Healing, a psychological study of the modern novel.