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…/

Abandoned

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The five-year old girl sat waiting in her wheelchair. When she tried to speak, all she could say was a mournful “aaah.” She was scrubbed clean. Her pink leggings matched a pink t-shirt matched her pink sneakers and pink socks. Her tight black curls were cut close for easy care. Her head swished back and forth as if she was scanning the room with her deep brown eyes.

Abandoned by her birth mother. Abandoned by her foster parents. She was denied placement in kindergarten, because her constant crying disturbed the other children. No one knew if she had ever received any therapy. Continue reading

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

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.

Saying What She Wanted

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The Huffington Post recently ran this blog post: “Man With ALS Tells His Wife ‘I Love You’ Out Loud For First Time In 15 Years.”

I thought, how sweet. His first words were his expression of love for his wife (and primary caregiver). I had hoped for similar sentiments from Ariela. Maybe she would say something like, “I love you, mom.”

She was around twenty, when she received a new communication device, a system that came with hundreds of short phrases, as well as an alphabet with word prediction software. She needed to select the first few letters and a choice of words would appear on the computer screen. A small speaker by her ear gave her the cues, and at that time, she used a switch on her forehead to choose the word she wanted. She was quick to use the phrases, experimented with the alphabet, but had yet to spell a word.

Not long after getting the device, some of her friends came for dinner. One friend brought a boyfriend, a good-looking guy with a goatee. He sat down across the table from Ariela and smiled at her.

Ariela looked directly at him and said with her synthesized voice, “K” and “I” and then “Kiss.”

Now for all of you who participated in the Ice Bucket Challenge:  Like Ariela, people with ALS rely heavily on assistive technology to communicate.  Ariela was fortunate to have had private insurance pay for her communication device, commonly called Speech Generating Devices (SGDs). The man with ALS might have had coverage for his SGD through Medicare and/or Medicaid. However, changes in the last year are threatening this coverage. You can help. Contact your U.S. representative and ask for support for H.R. 628. Here are the details.

A Question for Stephen Hawking

I just saw The Theory of Everything. I put off going, afraid to see things I didn’t want to see. And, yes there were scenes that felt similar to experiences with Ariela – the regression, the first wheelchair, the choking, the loss of speech. Then, Gary reminded me about the time Ariela met Stephen Hawking.

November, 1998: Thousands came to hear Hawking speak in San Jose. Preceding his lecture, he asked to meet with a much smaller group of students who used assistive technology for communication. Ariela’s teachers had briefed her on Stephen Hawking. She was excited to meet the celebrity scientist. We arrived early. Doormen at the Fairmont Hotel greeted her at the door. We rolled her down a long corridor with flocked wallpaper and crystal chandeliers. The pomp and grandeur of the place wasn’t wasted on Ariela. Dressed in a new outfit and patent leather Mary Janes, she felt like she was a celebrity, too. Questions for the professor had to be submitted in advance, and her question had been selected.

There must have been about one hundred students of all ages in the conference room that afternoon. Ariela was one of the youngest. When her name was called, Hawking rolled toward her. I had pre-programmed Ariela’s communication device with her question. All she had to do was hit her switch with her chin. She paused. I hoped she wouldn’t take too long. We all waited. Then, she hit her switch, and with her synthesized voice she asked, “When you were in the fifth grade, what was your favorite subject?”

It took Professor Hawking a few moments to respond. He had a small communication device mounted on his chair. It looked like he used one finger to scan through what must have been thousands of letters, words and phrases and another finger to select. “How old are you in the fifth grade in the U.S.? We have a different system in England.”

I suppose I was a bit awestruck by the man and the event. Forgetting that Ariela had a button on her device to say her age herself, I jumped in and answered for her. “She’s ten.” To this, Professor Hawking answered, “Science. That was my favorite.”

The movie is beautifully executed. His story is told without sentimentality. It portrays the man as the very real person he is – exceptional and flawed, as we all are.

“We are all different, but we share the same human spirit. Perhaps it’s human nature that we adapt and survive.” Stephen Hawking July 18, 2013.