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

PICU

2002

This story was published recently in The Big Roundtable. Ariela had many hospital stays. The time in Pediatric Intensive Care was the longest and the most difficult.

I’m taking this opportunity to raise awareness for Rett Syndrome.  RS was Ariela’s underlying diagnosis, though we didn’t know that at the time of this story. About 80% of girls with RS have scoliosis (curvature of the spine). Like Ariela, many of them need the spinal surgery I describe in this story.

Please join me in finding a cure.  Scroll down to the end of the story to make a donation to the International Rett Syndrome Foundation (IRSF). All contributions, including The Big Roundtable’s commission, will be donated to IRSF. Thank you. http://bit.ly/1K6nqcm

Harriet and Gary Go To Cuba

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Cuba. Sounds like a fun, carefree vacation on a tropical island. Just grab your swimsuit and straw hat and be prepared to mambo the nights away. With Obama shaking hands with Raul Castro, we were ready for a rum and cigar filled trip. We wanted to go soon before the golden arches sprung up in the middle of Old Havana and Starbucks started serving their version of café con leche.

But a handshake is not an agreement. Americans can’t go as individual beach hugging tourists. You have to connect with a group, a group with a purpose – religious, cultural, people-to-people. We got lucky and hooked up with a group from a Brooklyn Heights synagogue. The itinerary included historical landmarks, cultural sites, and four Jewish communities in Havana, Santiago de Cuba and Guantanamo.

We were sent a list of gifts to bring. Medications, over-the-counter drugs, hygiene products, clothing, school supplies. And that left us with a lot of questions. What does it mean to have universal healthcare but a scarcity of resources? What is it like to be Jewish in Cuba? The revolution promised equality for all. But what does freedom mean for someone with disabilities? What does freedom mean to someone who can’t navigate the streets or get on a public bus?

About ten days before our trip, I developed a pain in my leg. Sciatica, I thought. Or, maybe I had pulled a muscle in yoga class. Then, a week before our trip, I was taking a shower. I looked down at my left leg. A cluster of rashes from my knee to my ankle. Shingles. I had taken the vaccine, but there are no guarantees. And my questions became more immediate and more personal.

Was I contagious? “No,” said the doctor.

Should I go? “That’s up to you,” said Gary.

Why now? On April 23, 2015 we were to meet the group from Brooklyn in Miami. April 23. Exactly eleven months after Ariela’s death. According to Jewish tradition, Kaddish, the prayer for mourning is recited for eleven months after the death of a relative. Like a lot of Jewish traditions, the timeline made no sense to me. How do you set a limit to mourning? I had felt numb after Ariela’s death. Eleven months later, I was only beginning to feel the pain, and my grief appeared in red ugly blotches on my leg.

I went because I didn’t want to miss an opportunity to see a country on the verge of change. I suspect Cuba will not look the same in a year or even six months. I went because, wherever I am, Ariela is always with me. I see the world through the eyes of a young woman who sits in a chair and talks with a computer.

In truth, if she was still with us, we would not be able to go on this trip or any of the other trips we took in the last year. She was just too medically fragile to travel.

“Making up for lost time?” an acquaintance commented.

“No, we’re pretending to be Lucy and Desi.”

And with that we put on our straw hats and boarded the plane for Miami.

To be continued, amigos.

Passover Sedars – Past and Present

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I never liked Passover when I was a kid. Sedars were long and tedious. We couldn’t eat anything until all of the blessings were said, and all of the commentaries were read in Hebrew and sometimes in both Hebrew and English. My siblings, cousins and I were expected to sit still and be quiet. Dressed in our good clothes. Hands in our laps. It was understood that we were not to embarrass our parents. Tanta Bella and Tanta Hannah and old cousin Joseph were there. And then, there was my grandmother who seemed to have little tolerance for the normal disturbances of children. She commanded my mother with a shrill voice and spoke almost entirely in German, a language none of the children fully understood.

Then I became a parent, and Sedars became a time to get together with family. One year, we all met at my sister Lynn’s house in Connecticut. My brother and his family came from Texas. Gary, Ariela and I flew in from California. The adults told the children that they should conduct the Sedar. The two oldest, my brother’s son, John, and my sister’s son, Aaron, both around twelve years old at the time, took control and delegated the parts to the grown-ups and younger children. They asked my mother to read the four questions, normally the task for the youngest. The boys told anecdotes and gave us their own commentaries from the lessons they learned in their Jewish day schools. Ariela had a simple switch device then. The switch was hooked up to a tape recorder, and they asked Ariela to lead everyone in singing “Dayenu.” It would have been enough. It’s an upbeat melody, almost like a march. That was her favorite song. It was a Sedar to remember.

The last time I went to my sister’s house for Passover was in 2003. About six weeks later, Ariela had surgery on her spine. She never fully recovered. She could no longer eat by mouth. Air travel became difficult. The next year and all years after that, I opted to stay home and conduct the Sedar myself.

The first Sedar in our home took place around our kitchen table with a handful of friends. The number increased over the years as Ariela’s aides and companions became part of our extended family. We usually had upwards of 20 people. Millennials outnumbered boomers. Non-Jews outnumbered Jews.

“It’s not just a meal,” I liked to remind our guests, but everyone wanted to contribute. Laura -vegetarian chicken soup, Nicole – flourless chocolate cookies, Jo – green salad. We substituted sushi for gefilte fish, because no one liked gefilte fish.

I started our Sedars explaining the basics of the rituals and the story. I sang the Hebrew songs solo, because no one else knew them. With lots of wine, no one complained about my voice.

I asked everyone to bring a story, a poem, artwork, or a song about slavery, freedom or redemption. One year, Lindsey led us all in singing “This Little Light of Mine,” a song from the underground railroad. Nicole talked about the people of the Baha’i faith who have been persecuted, tortured and imprisoned in Iran since the Islamic Revolution in 1979.

Over the years, Ariela’s communication devices became more sophisticated. But, her devices (computers that generated speech) only spoke English. Days before the holiday, I’d program the prayers in a transliterated Hebrew. We went over the words together trying to reproduce the ancient Hebrew sounds with English letters. Ariela spoke Hebrew with a hi-tech accent. She sat in the middle of our dining room table, surrounded by her friends. She said all of the blessings with her synthesized voice, and everyone answered, “Amen.”

This is our first Passover without Ariela. Gary and I went back to Lynn’s house in Connecticut. A few of Ariela’s friends expressed disappointment, but they understood.

I was glad to be at my sister’s house, away from everything that reminds me Ariela isn’t here. A small group of Lynn’s good friends gathered around her beautiful table. Most could read the Hebrew and say the prayers. They were all familiar with the traditions. My sister, Aaron, now in his thirties, and I sang the old melodies that our mother had taught us. Several others sang along. My sister served real gefilte fish (not the stuff from a jar).

We opened the door for Elijah, symbol of our hope for peace and the end of human suffering, and we were greeted by an icy cold New England wind. I thought about our balmy nights in California and our Sedars there. This is a night meant to be different from all other nights, and in many ways it was.

3 Lessons from Pre-K

iguanaI read a story in Huffington Post last week about teaching kindness in kindergarten. Who could argue with that? Comments came in with praise for the program.

The story brought back memories of my daughter’s pre-K class. We had just moved to a small town in Massachusetts. It was late in the school year when I rolled Ariela into class. The teacher must have told the children that Ariela could neither walk nor talk, but that she could hear and understand everything they said. I saw the children at pick-up and drop-off and the few times I volunteered in the class. Many of them wanted to help. They brought her the crayons and gave her a turn at petting the class iguana. They understood that she needed extra time to do just about anything. Lesson #1: Patience.

The more the kids got to know Ariela, the easier it was to be friends. The talkative ones did all the talking and the quiet ones moved the puzzle pieces and sat next to her during story time. Ariela had all the qualifications of a good friend. She was a good listener, never complained, let you chose the games, and could be trusted to keep a secret. She would never abandon you. One little boy made a ceramic dragon for Ariela in art class. Lesson #2: Thoughtfulness.

Ariela had a one-on-one classroom aide. There were at least three during Ariela’s year and a half in pre-K and eight in the three years we lived in that small town. Some of Ariela’s aides were better than others. I’m not sure how well the aides modeled kindness. One of her aides was arrested for disturbing the peace. Another wouldn’t take Ariela outside for recess, because it was too much trouble to put on her parka and hat and boots and mittens.

Those aides could have used a lesson in kindness. They had only to look to some of the children for guides.

At the end of the school year, Ariela’s pre-K class joined a class from another school for playground activities. A boy from the other school stared at Ariela. He tilted his head and watched from a distance. He probably had never seen a child in a wheelchair before. “How can you be friends with her?” he asked a girl in Ariela’s class. “She can’t even say hello.”

Ariela’s classmate became visibly irritated with the boy. “She can too say ‘hello.’ She says ‘hello’ with her eyes.” Lesson #3: Acceptance.

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.”