Beach Tires

crissy fieldI’m very excited to see my story, “Beach Tires”, in Hippocampus Magazine. Ariela was very proud to be a trail docent in Golden Gate National Park. The photo in Hippocampus shows her trail at Crissy Field. Ariela’s painting on my website banner is a view from her trail.
http://www.hippocampusmagazine.com/…/beach-tires-by-harrie…/

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

Free Concerts in San Francisco.

Inside Old St. Mary's photograph by Kevin G. McGlynn

Inside Old St. Mary’s, photograph by Kevin G. McGlynn

This was published today in Huffington Post. The photograph tells the story.

Ariela loved music. She took almost every music appreciation class City College had to offer — Jazz, Latin, American Folk, Traditional African, Black Tradition in American Dance, Classical and Opera. From years of listening to books on tape, she had developed an incredible auditory memory. After hearing a piece once, she could identify title, composer, and genre. Class assignments often included attending and critiquing live concerts. That’s when she searched and found Noontime Concerts. Continue reading

Ariela’s Friends and Mine

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Ariela’s friends come to see me. I like to think they are my friends, too. But first they were friends with Ariela. They started as her aides, hired for the job. But it was never just a job, and they knew that from the start. In the past week, four of her friends came by, and two sent me emails.

I went to dinner with Kim. We came back to my house and my closet. Kim is my fashionista buddy and was Ariela’s before she was mine. She went through my sweaters and told me I needed to get a few new things for my trip to New York.

“These are fall colors. You need spring,” she said. “We’ll go shopping.”

That’s good, because I hate shopping by myself. I see a top or a dress and think, “Oh, that would look so cute on Ariela.” Then, I remember.

I used to love buying clothes for Ariela, though she rarely liked what I selected. She loved shopping for herself. I was never sure if she didn’t like my taste, or she just wanted to have some control over her life, or maybe she wanted to tell me she could buy her clothes without me.

I think clothes are all about communication. Ariela liked to make a statement with her outfits. So, it figures that she would want to pick out her own wardrobe. She went in for plaids and stripes and bright colors. I suspect she would have been more flamboyant in her dress if she could have found more things to fit. She wore a size 7 girls. It’s not easy to find trendy clothes in that size. I had a few things tailored for her. But most of the time, shopped in the children’s department and avoided anything that said, “juvenile.” She shopped with friends, like Kim, who knew what was cool and would buy things they liked. She liked Abercrombie’s and Forever 21 and the GAP.

So, now I shop with Kim, because she knows what’s in fashion. And like all of Ariela’s friends, she connects me with all things young, and hip, and springtime, and Ariela.

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.”

 

 

The Psychic

psychic cartoon We went sightseeing at the Baltimore Harbor last weekend. It was a warm Sunday afternoon, and lots of people were out, meandering around the shops and stalls on the plaza. An old woman in a straw hat sat under an umbrella between the fire juggler and the arborist.   Beside her a large poster board read, “Psychic readings $5 and up.”

“Let’s do that,” my sister said. I was surprised that she would suggest something so woo-woo, but I was game. We had some time to kill.

Leslie The Psychic told me I was creative.

“Good start,” I thought.

Then, she asked me what I did. “I’m a writer,” I said. “I’m writing a book.”

“What’s it about?” Leslie asked. If she’s a psychic, isn’t she supposed to know that?

“About me and my daughter.”

“Your daughter doesn’t like this book,” Leslie said.

I nodded. How did she know?

“Where’s your daughter now?” Leslie asked.

Leslie was quickly losing credibility with me.

“She died,” I said. Leslie should have known that.

“Have you thought about the cover?”

“Well, my daughter was an artist. I was thinking about one of her paintings.”

“No.” Leslie shook her head. “Put that on the back. You need to put something on the cover that will make me want to grab that book off the shelf in Barnes and Nobles.”

So, now Leslie’s a psychic and a marketing expert.

“She doesn’t like everything you’re writing. You need to put something on the cover that she will like.”

“Fair enough,” I said.

“Your cover should have clouds, because she’s in heaven. And you should be walking along a beach.” Leslie drew a cartoon of a cloud and a stick figure on the back of her business card and handed it to me.

Not exactly what I had in mind. Leslie couldn’t draw very well, either.

“Your book will be a best seller,” Leslie said.

Well, that’s reassuring.

“Call me,” she said. “And God bless.”