More than a Cookie

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It’s Girl Scout cookie time. I bought a couple of boxes a few days ago. The Scouts were in a prime spot, outside Lunardi’s Supermarket. Location is everything. I remember standing in front of Safeway with Ariela and her troop. She used her communication device to call out to customers, “Girl scouts cookies. Would you like to buy some Girl Scout cookies?” Her digitized voice sounded like a girl’s version of Stephen Hawking. People stopped. Then another member of her troop would swoop in to close the sale. Continue reading

Not Your Typical Artist

hoopoeThis story was published today in Huffington Post.

The ad in Craigslist read “Not Your Typical Attendant Position.” I was trying to be clever, to stand out from the other ads that read “Wanted – Personal Care Attendant.”

The attendant was for my daughter, Ariela. “I’m an active twenty-three year old woman looking for a fun-loving, bright, energetic, and reliable person to assist me. I’m quadriplegic and nonverbal. I use a communication device to speak.”

I waited for the initial phone interview to explain her other medical issues — epilepsy, restricted airways, a feeding tube. “She has a tremor,” I told applicants. “Her head bobs. Her legs shake, and her arms wave in a rhythmic motion, like she’s following a Latin beat. She has no use of her hands.”

I’d tell them all that, and then I’d ask if they were scared. Sometimes I’d explain how she got that way: Rett Syndrome, a genetic disorder primarily affecting females. I refrained from singing “How Lucky to be a Woman,” until they knew me better.

“You will accompany me to City College and to Crissy Field, where I’m a volunteer trail docent,” the ad read.

I cautioned candidates not to treat her like a baby. “She may look like a little kid, but she’ll hate you if you treat her like one. She’s trapped in a body that doesn’t work. Inside, she’s just like you.” I said this to the millennials who applied. We rarely hired anyone who wasn’t a millennial. Ariela wanted to be with her peers.

 

Ariela conducted the in-person interviews. She listened for cues from a small speaker placed near her ear. When she heard the word she wanted, she hit a chin switch to activate her computer and speak with her synthesized voice.

She needed a team of four or five, each covering different shifts. When one would move on, usually for graduate school, she’d hire another. She made the hiring decisions.

I looked for people who wanted a future in medicine or therapy. Ariela had her own criteria. Over time, she hired a professional hair and make-up stylist, a fashion consultant, and a bartender.

A few years ago, a young woman with a Masters of Fine Arts answered the ad. “Why would someone with an MFA want this job?” I asked.

“The time I spent as a caregiver influenced my artwork,” she said.

That seemed a bit artsy to me, but she had a cheery voice and personal care experience.

Ariela sat at our kitchen table and fired out questions in fast succession. “What are your favorite sports? What books do you like to read?”

Amy sat across from Ariela. “I enjoy swimming, and I read books about art and artists.”

“That’s cool,” Ariela said.

Amy was a cute blonde with cherry red lipstick. She smiled a lot. She looked to Ariela for the next question.

“What do you like to do for fun?” Ariela asked.

“I’m an artist. Maybe you and I could work on an art project together.”

“Well, let me say a few words here,” I interrupted, and Ariela was not pleased. I could tell she liked Amy. I had a good feeling about her, too. But, she just walked in. What could she possibly know about Ariela?

“Ariela likes going to museums and galleries,” I told her. “But forget about creating art. Believe me, we’ve tried. I’ve strapped a brush and those fat magic markers to her hands and then guided with hand-over-hand assistance. She doesn’t like people grabbing her hand and pushing it around. She just closes her eyes or stares up at the ceiling. It’s just too frustrating.”

“OK.” Amy would never contradict me, even after Ariela hired her. If Amy was skeptical, she never let on.

Amy worked evenings and weekends. She took Ariela to movies and concerts and shopping malls and art museums.

Then, one day when Amy had been working with Ariela for several months, I came home and saw two paintings drying on my kitchen table. It was hard to hide my amazement. Amy and Ariela passed collusive glances back and forth, both of them grinning.

Bold, bright colors exploded in broad strokes on the canvas panels. The images were ill-defined, but there was intensity and intention in the brushstrokes. Ariela’s tremors were evident. The acrylics were in motion.

“We had a great time,” Amy said. “Ariela really got into it.”

Paint splatters covered the arms of her wheelchair and Ariela’s sweatpants.

“How did she hold the brush?” I wasn’t sure what I was seeing.

“She didn’t,” Amy said. “I strapped the brush on her forearm and held the canvas close enough for her to reach. She needed a little support at her elbow. Not much. She did the rest. She picked all of the colors and told me where she wanted to place her brush.”

I picked up the first painting and held it in front of Ariela. “It’s really beautiful,” I said. Her excitement caused her arms to take a wilder sweeping motion. I could see she was pleased.

Ariela began painting with Amy several times a week. She started with still lifes, then landscapes, then animals, especially birds.

She didn’t want to sell her paintings. She donated one for a charity fundraiser. It sold for several hundred dollars.

Before she died, one of her watercolors was selected for a juried show. I pushed Ariela at the opening. We stopped for a while in front of her painting, a bird in flight, wings spread wide, fluttering in space. We liked its placement at the front of the gallery. I could imagine the bird flying off the paper and out the front door.

The art director greeted us and asked me if I was the artist. I looked down at Ariela, her arms bent, waving. I thought about how she had found her own way to express herself, how she had gone beyond the limits of my imagination.

“No,” I said. “She’s the artist.”

 

 

Unsolicited Advice

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My ninety-five year old uncle called me after Ariela died, right after Shiva, the Jewish ritual of seven days of mourning. He told me he was sorry for our loss. “You loved her, you did everything for her. You gave her everything you could. Now, get over it. Move on with your life.”

At first, I was stunned. On the face of it, his words seemed so callous.

“He didn’t really mean it the way it came out,” his son told me. I wondered about my uncle’s curious advice.

My mother-in-law used to say, “When you live as long as I have, you can say anything you damn well please.” She was well into her eighties when she said this. Still, I didn’t want to dismiss my uncle too quickly.

I saw my uncle this weekend. He lives in Chicago now, and I don’t see him often. He uses a walker and has trouble hearing. He still plays Scrabble. He plays with the dictionary by his side and looks up words before he places his tiles.

He called me “Hairy-et.” I called him, “Uncle Rudy Kazootie.” My uncle from Luxembourg, a country too small to see on our globe. My uncle who manufactured draperies and bedspreads, who read the New York Times every day on the subway, who always wore a hat to cover his balding head, who rooted for the Yankees while my dad cheered for the Orioles, who was openly affectionate with his wife. “She’s a hot potato,” he’d say as he pulled her onto his lap, something my father would never do with my mother.

“I’m the last of the Mohicans,” my uncle said after my cousin Robert died last year. Robert was in his eighties. That left my uncle the last person to know my parents before I was born. “What were they like?” I asked him.

“Good people,” he said. “Your father was an exceptional person.” He put two fingers to his lips and kissed them, like he had tasted fine wine. Then, he squinted his eyes and pushed his palm against his forehead, trying to squeeze out more memories.

My aunt died more than ten years ago. My parents are both gone, too. Of his four siblings, only Rudy’s younger sister is left. A black and white photograph of his younger brother hung in a central position in my uncle’s living room. A handsome man in a soldier’s uniform. “He volunteered for a mission over France and never returned,” my aunt said shaking her head. He was twenty-two, younger than Ariela.

I told Gary about my uncle’s advice. “Don’t you remember Ariela’s favorite expression?” he said.

Ariela spoke with a computer. She used her eyes as a mouse. She had hundreds of phrases filed into folders by category and subcategory. When she was done listening to other people’s complaints about anything from traffic to taxes, from colds to Comcast, she’d navigate through her files and say, “Get over it.”