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

The Visitor

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I went to see Ariela’s gravesite yesterday. Skylawn is about a mile from the Pacific Ocean. From the edge of the cemetery, you can see a sliver of the water. That’s when it’s not foggy.

As soon as I got out of my car, a cold wind grabbed me. Wind and fog – Ariela’s kind of weather. I went back to my car for my sweatshirt and started to climb up the hill to Ariela’s site. I was so teary that I couldn’t find her marker. I saw Chinese names and then Spanish names. Where were the Jewish names? 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

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.

Grief and Me

It Allowed the Seas....

It Allowed the Seas….                            Ariela

Last Sunday, The NY Times ran the article “Getting Grief Right.” The title is curious — as if there is a right and wrong way to grieve. There are so few spaces to talk about grief, and our immediate response is to fill that space with something uplifting. Sometimes in the ever-current quest for happiness (Are they playing the “Happy” song again?), we forget that grief is a part of being human. Here’s the comment I posted in the Times.

I don’t know how grief can be delineated in stages or chapters. For me it is amorphous, with many deep and mixed emotions. I go back and forth and around with grief and guilt and relief and anger and despair and longing and love.

My daughter had a rare condition that left her a quadriplegic and non-verbal. She also had a severe seizure disorder. She required care 24/7. I’ve been grieving almost all of her life, ever since I learned she would never live normally. In spite of her disabilities and medical issues, she lived 26 years, far longer and fuller than many experts predicted. Her many accomplishments and strong will made her an inspiration to many. But, I am not consoled by her wonderful life.

Since her death last year, I have donated time and resources to charitable causes in her name. I have travelled and read books and gone to movies that I never had time for before her death. All distractions. Nothing fills the gaping hole in my chest.

We all grieve in our own ways. Judging from the number of people who have responded to Dr. O’Malley’s article and the intensity of their responses, we have a lot to say about a subject many people don’t want to talk about.

November 17

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Today is Ariela’s birthday. She would have been twenty-seven. We always celebrated with a party and presents. I don’t know what she liked better — being the center of attention or getting all of the presents.

When she was in elementary school, we invited her entire class to her parties.

My mother would never let me leave anyone out. Even Evelyn Miller who had cooties. “You’ll invite Evelyn or there won’t be any party,” my mother said. “Remember, you went to her party.”

Nowadays, it’s amazing how many people don’t reciprocate. Even kids who came to Ariela’s parties year after year. The little girl who lived four houses down. The twins in her Girl Scout troop. Maybe those girls didn’t have parties.

One girl in her class always included Ariela. For one birthday, a long white limousine drove everyone to a restaurant atop a skyscraper in San Francisco. I hear that girl moved to New York City. I’m sure she’s building skyscrapers now.

Ariela had lots of bowling parties. Duck pins when we lived in Massachusetts. Ten pins in California. She took friends to the San Francisco aquarium on two birthdays. Another year to the opening of a Harry Potter movie. At twenty-one, she invited her friends to a nightclub. A few years ago, a friend threw her a surprise party. A lot of great parties, just not enough of them.