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.

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.

Saving the Planet

crissy field Gabriela & Benji

Last week, President Obama vetoed legislation to approve the Keystone XL pipeline, a major move to protect our environment by curtailing production of fossil fuels.

Ariela was a tree-hugger and a member of the Sierra Club.

Her passion for the environment began after she heard Julia Butterfly Hill. Ariela was about twelve years old at the time. She sat in the front row and stared up at the guest speaker. Butterfly Hill was a young woman who didn’t lean on platitudes. She told her story with religious zeal, and she spoke directly to Ariela. Saying “Save the Redwoods” wasn’t enough. Butterfly Hill had lived in the upper branches of a thousand year-old redwood for over two years.

Ariela was inspired. She read both of Butterfly Hill’s books, The Legacy of Luna and One Makes the Difference: Inspiring Actions that Change our World. That’s when she joined the Sierra Club. Like Butterfly Hill, Ariela wasn’t one to rest on slogans. When she finished high school, she became a volunteer trail docent at Crissy Field, part of Golden Gate National Park. She patrolled once a week for eight years. Her dog, Benji, dutifully came along until he no longer could. Her painting on the banner of this website is her impression of the trees she passed on the trail. Ariela was very proud to be a steward of the park and of our natural resources. She knew that to save our planet we would need to change our behavior. She would have approved of Obama’s stance against the pipeline.

The kings of the forest, the noblest of noble race, rightly belong to the world, but as they are in California, we cannot escape the responsibility as their guardians.   – John Muir