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Filmmaker Sheila Nevins Defends Her Mother

The personal story of a family living with Raynaud’s phenomenon

Sheila Nevins

Courtesy of HBO

Sheila Nevins, 78, is the president of HBO Documentary Films.

Chock full o’ Nuts was an old-time coffee shop with great raisin cream cheese sandwiches and coffee that was always the right kind of hot. Hardly the place for a game changer. And yet it happened to be one.

My mother was born with an awful disease called Raynaud’s phenomenon. Most of the time Raynaud’s simply means you have a lack of circulation in your extremities. Annoying, yes, but nothing to be alarmed about. But my mom had a severe case, the kind where your fingers, toes, and then even arms and legs would lose circulation and go from blue to black and then become gangrenous. It’s incredibly painful. If they turn black, they never heal, and then they die. And the only treatment is amputation.

I grew up fearful of decay. A black nail meant a finger above the knuckle was in danger and eventually would come off. My mother’s disease started ruthlessly with her fingers — first it was the second fingertip on her left hand, and then, over the years, it progressed. Mount Sinai Hospital in New York was my second home. I knew all the nurses. I knew exactly how much change was needed in every vending machine. I wanted sweet things. Life was sour. Yet no Raisinets, no Jujubes or Almond Joy could take away the bitter taste of life’s brutal entrance fee.

“Mom,” I would say, “why do we live if we have to suffer?”

And my mom would say, “What’s the choice?”

And so it would be that I grew up sad and terrified, thinking every cold was terminal pneumonia, every small paper cut a future amputation. After all, I was my mother’s daughter.

My mother was hard on me. I never seemed to do anything right. Pain disturbed any pleasure she might have had. In any event, she might need my nursing skills. If I resisted this servitude, I would be blamed. She told me again and again that I was selfish. We didn’t have money for help. My mother was angry about living in hell, and I was her closest driver in this River Styx. Sure, I had a sister, but she was seven and a half years younger. So, of course, I was her caretaker, too. Sheila, do this; Sheila, do that. Sheila, you didn’t do this; Sheila, you didn’t do that.

I loved my mother but at the same time resented her. While my friends’ mothers shopped and worried about the color of their hair as it turned gray and their Fire and Ice matching lipstick and nail color, I lived in a private war-torn universe. I lived with a noose around my neck. And so I became … me.

My father was never home. He worked at the post office, booked bets for the mailmen and spent his nights playing cards in what were known then as goulash joints on the Lower East Side of Manhattan. These were working middle-class clubs where men would play poker for cash and bet on horses and sporting events. They all smoked. My father smoked three packs a day. His nickname was Benny P.O. “Hey, Benny, I want to bet on the Knicks game. What are the odds? Who’s the favorite?”

One day when I was a sophomore living in a Barnard dorm, frequently commuting home, at my mother’s beck and call, my mom came uptown for lunch. She was driving a newly equipped car with odd hand brakes that could be maneuvered with her elbow. She was proud of its adaptability, and she zoomed citywide, thanks to the Rusk Institute, the post office’s medical plan and Volvo mechanics. By this time she had suffered an amputation of her left arm just below her elbow. As ugly as the amputation was, it was a great improvement over the creeping crud of gangrene and the excruciating pain of a dying limb.

Sheila aged 2, in the arms of her mother.

Sheila Nevins

An image Sheila Nevins cherishes: Her mother holding her when she was just 2 years old.

In 1960, my mom was only in her early 40s. This seemed old to me then. I was born when she was 22.

She had come that day for lunch, wanting to go to Chock full o’ Nuts to get one of their famous raisin cream cheese sandwiches and the always just-right hot coffee. She seemed happy for once to see me, happy to be mobile and driving by herself, happy to be ambulatory, though amputated.

It was a sultry, too-warm day in May. My mother’s pleated dress had long sleeves — the one on the right arm rolled up and the one on the left tied in a knot below the stump. (There must be a better word for “stump,” but, frankly, why euphemize the ugly?)

The air-conditioning in the restaurant was off. It was tolerable, but Mom was hot with the knotted sleeve. That amputated arm had ghostlike-sweat that would often roll down and wet the inside, as if the stump were crying and trapped without air.

Mom said her arm was stifling, stifling. I rolled up her left sleeve, untying the knot. I unbuttoned the second button of her dress and fanned her with my study notepad.

“Any better?” I asked.

“Not really,” she said.

Our sandwiches came, and the perfect coffee. Hot on a hot day, but perfectly so. Mom rested her stump on the counter. Her shortened arm was heavy to lift and too short to hide below the counter.

Suddenly, from the other side of the S-shaped counter, a middle-aged woman with a kinky permed bob and harlequin glasses, who was fanning herself with a newspaper, yelled out. “Please, ladies, I’m eating. It is rude to expose that arm. It makes me want to throw up.”

That’s what she said. That’s what I remember she said. And every time we’d tell this story to close friends, or sympathetic physical therapy folk, or just to each other, that’s what my mom remembered she’d said, too.

I apologized to this bitch, which was odd for me. I wasn’t the apologetic type. I was afraid she would hurt me or make a bigger scene. I rolled down the sleeve and retied the knot. “Sorry, sorry,” I said to her. 

I was embarrassed.

Everything was going too fast. Customers started taking sides. The woman to our left said that the lady who spoke out was crazy. Yet a man on our right said that, after all, this is a place to eat, and some things are not meant to be seen while eating. The two squabbled, these strangers.

Mom and I hurriedly left the restaurant. The sandwiches were never going to be tasty again. The coffee was never going to be the right kind of hot. All was cold.

I cried in the fixed-up car. Mom said the woman was nasty, maybe a little crazy, too. But I cried because I had not yelled back. I should have said, “F--- you! This is my mom. She has a horrible, horrible disease that you are lucky enough not to have.”

I was furious that I had apologized. Why had I? Why was I ashamed? Why had I let this woman seize this moment? Why?

People talk of moments that make you change. That determines who you are. This moment was mine. I would realize that I understood people and their suffering, and somewhere, in defending their difference, was a place for me. I had failed once, and I wouldn’t fail again.

So I would eventually become a documentary filmmaker, to champion stories about those who are less fortunate. Mostly I chose to tell stories of the struggle to triumph in an uncertain and often cruel world.

I’ve always been interested in those who need visibility and acceptance — anonymous victims of unfairness, deprivation and poverty. I guess I was determined to right my ineffectiveness at that lunch counter visit. Documentaries talk back, while I had been unable to. They speak without shyness — no apologizing. Blatant truth. Ugly at times, yet always true. 

This essay is excerpted from Sheila Nevins' new book, You Don’t Look Your Age … and Other Fairy Tales. Copyright © 2017 by the author and reprinted by permission of Flatiron Books.

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