A Life not with Standing

Well-known author, editor and motivational speaker Chava Willig Levy, a polio survivor, recently published a heartwarming memoir, A Life not with Standing. With humor and wit, Levy recounts the painful surgeries and hospitalizations she experienced as well as the loving support of wonderful family and friends. This riveting and deeply moving saga tells how the brilliant and spunky Levy sets out to shatter stereotypes about people with disabilities.

Published by CreateSpace, A Life Not with Standing is available as a print book at http://tinyurl.com/k6qxwo8 and as an e-book at http://tinyurl.com/mos5gqr. Below, we publish a few excerpts:

“I Didn’t Come Running”
People ask me all the time if I remember what happened to me. I don’t. But my battle with polio became so embedded in our family lore that, if I close my eyes, I can see and hear everything that transpired.

Saturday, August 13, 1955. Drenched by Hurricane Connie, my father had just returned from the synagogue, deeply disappointed to have been the only one there. But as soon as he dried his glasses, the silver gleam of his goblet on the secondhand table—and of my sister Temi’s Slinky under it—caught his eye. He smiled and rubbed his hands together.

“Kiddush, everyone!”

I didn’t come running. That got his attention. An impish strawberry blonde with an inordinate fondness for Malaga wine, I never missed kiddush, the blessing over the Sabbath wine. But I did that day, lying limply on our dilapidated couch and complaining of an unbearable headache.

“No cause for alarm. Her fever is barely 101 degrees,” Dr. Lester, a fellow vacationer in Woodridge, New York, told my parents on Sunday morning.

When he returned on Monday morning, my neck had stiffened. “Let’s get her to Dr. Mehlman in Middletown for a consultation.”

So Imma and Abba drove forty miles to Middletown, sixty times the size of Woodridge. Dr. Mehlman took one look at me and took my parents aside. “I suggest getting her to the hospital immediately. This could be polio.” So they carried me back to their car and sped 110 miles from Upstate New York to Brooklyn’s Kingston Avenue Hospital for Infectious Diseases.

My parents often told me what I was saying intermittently during that three-hour drive: “Look! A train!” But what were they thinking?

Just four months earlier, on April 12, 1955, they had been jubilant. Dr. Jonas Salk had made it official: His polio vaccine worked. But by August, April’s euphoria had disintegrated into anguish. And the kicker: They had done everything to prevent this nightmare. Knowing that it would take months for the vaccine to be distributed across the country, knowing that polio thrived particularly in hot weather and in big cities like ours, they had decided—for the first and only time in our family history—to splurge on a summer in the Catskills.

And for what?

If that’s what they were thinking, they never told me. And they never told me that, of the hundreds of children populating their bungalow colony, polio came after me and me alone. Like a laser beam, it came in for a pinpoint landing.

Instead, they told me I was a brave soldier when the doctor administered the spinal tap. (In the recesses of my memory, all I can discern is my mother lifting a polo shirt—navy blue with tiny red dots, or were they white?—over my head as I babble, unaware that my life is hanging in the balance.)

They told me I entered Kingston Avenue Hospital a curly top and emerged fourteen months later with my hair scared stiff.

They told me about the doctors’ dire diagnoses and prognoses.

“Mr. and Mrs. Willig, we’re sorry but your daughter has two kinds of paralytic polio: spinal and bulbar.”

“But what does that mean?”

“We don’t yet know to what extent, but at present the spinal polio has paralyzed her arms and legs. In addition, the bulbar polio has paralyzed her breathing muscles. That’s why we’ve had to place her in an iron lung.”

“Mr. and Mrs. Willig, we’re sorry but we now know that your daughter will never walk again.”

“How can you be sure?”

“Her right quadriceps has been left completely paralyzed. Without at least partial use of the quadriceps in both legs, walking is impossible.”

“Mr. and Mrs. Willig, we’re sorry but your daughter will have a severe curvature of the spine, affecting both her back and her neck.”

“But she looks perfectly straight!”

“That may be true now, but because her left side is somewhat stronger than her right, scoliosis will be increasingly apparent as she continues to grow.”

They told me I had a new name.

“Abba?”

“Yes, Chavela?”

“The people [breath] here think my [breath] name is [breath] Choffa.”

“I know, mamela. It’s hard for them to say your name because it’s Hebrew. English doesn’t have the sound that your name starts with.”

“But I think [breath] they’re making fun [breath] of me.”

“No, mamela, they’re not. But Imma and I have an idea. First, though, look what I brought you! Your favorite flavor too.”

“But Abba, I [breath] can’t get it [breath] to go down.”

“Maybe this time it will work. How about I hold the straw near your mouth? When you breathe air all the way out, try to take a tiny sip, real fast, before your breathing machine starts up again. You need to get strong, okay?”

“First tell me [breath] your idea.”

“Yes, ma’am. You sure drive a hard bargain! Okay, it’s a deal. Let’s make it easier for the people here. Did you know that you have two names? Your first name is Chava—and sometimes we call you Chavela or Chavi. Chava is a lot like the English name, Eve. And your middle name is Yehudis. In English, that’s a lot like Judy. Is it okay if the people here call you Eve or maybe Judy?”

I picked Judy. The name stuck for sixteen years.

Chava Willig Levy, a polio survivor, recounts her story in her new memoir.

As for polio, its name has been around for 139 years. And long before Adolph Kussmaul coined the phrase “poliomyelitis anterior acuta” in 1874, some say for 5,000 years, the polio virus lurked incognito. Today, most people have forgotten polio. Not me. I don’t want to forget.

And I don’t want to forget that although polio terrorized parents and children the world over, the disabilities it inflicted can’t hold a candle to the stigma the human race has attributed to them.

All in all, it had hardly been a fair match. I was a three-and-a-half-year-old pipsqueak, my opponent a seasoned, globetrotting bandit with countless conquests to his name. He overpowered my muscles. He absconded with my ringlets. He stole my symmetry. He even snatched my name. But over half a century later, I can say with certainty and satisfaction that I gave him a run for his money.

•••

“You Have a New Friend”
Ever the salesman (although an ordained rabbi, Abba earned his living selling mutual funds and raising money for Jewish charities), he took a client-centered approach. My friend Shifra remembers that Sunday morning when Abba joined her at her kitchen table, waiting for her to finish her bowl of Cheerios. “Rabbi Willig didn’t say anything about having a handicapped daughter. He just smiled gently and said, ‘You have a new friend. She’s just your age, and her name is Judy.’”

Not every mission met with similar success. Because it had no elevator, Abba failed to convince our local Jewish day school to admit me. He never maligned. He simply moved on, rejoicing when our synagogue let me attend its thrice-weekly afternoon class for public school students.

As for Imma, even without leaving home, she combed the neighborhood for guests. During our song-filled Shabbos meals, her designated seat gave her a full view of goings-on outside our dinette window. We’d be moments away from dessert when Imma would exclaim, “Look, the Bergers!” She’d practically leap from her chair, open our front door and call out, “You’re just in time for tea and cake!” Seconds later, the entire Berger family would be seated around our oval table. (Imma was an ardent advocate of round and oval tables. “Somehow,” she’d comment, “with a round or oval table, there’s always room for one more.” And she was right.)

As happy as I was to be back home, I knew rough moments. But Imma believed that self-pity was a luxury I couldn’t afford.

“Imma, those kids are staring at me!”

“Then stare back.”

Still, thanks to Imma’s open-door—and open-refrigerator—policy, our house frequently bubbled over with the laughter of children. Even if the only children in the house were the four Willig children, laughter abounded. Every night, lying nose to nose, Temi and I would pick a Broadway musical (West Side Story, more often than not) and our respective roles (I Maria, she Tony). We’d start with the overture and keep going until the finale, invariably interrupted by three strident raps on our bedroom door.

“Yooshena [Go to sleep]!” Abba would bark in mock rage. “It’s almost ten o’clock!”

“But Abba,” we’d protest, “it’s 9:08!”

“Yes, that’s what I said: It’s almost ten o’clock!”

Giggling in the dark, we’d pick up where we had left off, only more softly.

•••

“Matchmaker, Matchmaker . . .”

I had just graduated from college. Many of my classmates were married. Some were already mothers. And me, I couldn’t even get onto the playing field. I was willing to strike out, honestly I was. But nobody was giving me even that opportunity. All I was asking for was a chance at bat.

Closer to home, marriage was also in the air . . . During my senior year, Temi announced her engagement to Yigal, the Israeli son of Americans with whom Imma had grown up. I rejoiced because Yigal’s gentle, kind nature was unmatched, except by that of his bride. And besides, following Temi in birth order, I believed I was entitled to be the next Willig to marry.

With every passing year, I searched more and more frantically for someone, anyone, who believed it too.

It’s not that my parents didn’t believe it. When I asked, they assured me that they did. But I didn’t want to ask. I wanted their words to reach me unbidden. I wanted to hear unshakable conviction, even righteous indignation, in their voices. I didn’t.

I certainly heard righteous indignation in my own.

“Imma, you believe this? Someone wants to set me up with a man who’s old enough to be my father! And why is she suggesting him? Three guesses and the first two don’t count. Just because he’s disabled!”

“I’m sure she meant well,” Imma replied. “And remember, I married an ‘older man.’ I’m six years younger than Abba.”

“Six years?” I fumed. “We’re talking twenty years, for crying out loud! I’m telling you, she’s putting Yenta the matchmaker to shame. Doesn’t Yenta say something like, ‘He’s so good looking! And young! Well, actually he’s in his sixties. But he’s such a good, nice man’?”

Truth be told, he was a nice man, a good man, not to mention a brilliant man. But I couldn’t get past his age. What’s more, his garbled, torturous speech, a consequence of his disability, tortured my musical ears. And my reaction to that dissonance tortured my conscience. Here I was railing against those who wrote me off as “damaged goods.” Was I guilty of the same offense? Resolution, slow in coming, finally arrived: Had I nixed the relationship after one date, my hypocrisy would have been incontrovertible. But I agreed to meet him again. I gave it my best shot. I concluded that I had a right to my aural sensibilities.

I thanked the matchmaker for thinking of me. “By the way,” I added as casually as I could, “I have no objection to dating someone nondisabled.”

“Chavi,” she countered without missing a beat, “if a man without a disability agreed to go out with you, I’d wonder what was the matter with him, you know, psychologically.”

When I wasn’t sobbing into my pillow, I railed against my coreligionists’ hypocrisy. Every Friday night around the Shabbos table, we sang King Solomon’s ode to the woman of valor, “False is grace and vain is beauty; a God-fearing woman—she should be praised,” but I was no fool. I knew that outer beauty counted in the world, and the Jewish world was no exception.

Chava married Michael Levy in 1983. Michael is the director of travel training at MTA New York City Transit. The couple lives in Woodmere, New York.

They are blessed with a son, Aharon, daughter Tehilah, son-in-law, Tuvia, and granddaughter, Temima.

Listen to Chava Willig Levy speak about her memoir at www.ou.org/life/health/chava-willig-levy/.