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.

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.

Home Health Care

DSCN0472Stein’s article in The Atlantic gives readers a peek into home life with a child with significant medical needs. I commented on one of the many issues she addresses in her revealing story — Home is a Medicine Unto Itself.  Here’s my reply.

We live in a house in California. We have a lot of storage space and a two car garage. No matter how much we added to our once small cottage, my daughter’s medical equipment and supplies seemed to fill all the available space. And yes, in spite of two health insurance plans (employer sponsored and Medicaid), we paid for a lot out of pocket. As she grew and her ailments multiplied, every room said, ”A person with a disability lives here.” It could be an exercise ball, too large to fit in a closet, a suction device that was always out for immediate use, or her wheelchairs (a good one, an old one for back-up when the good one needed repairs, and a power chair that she was learning to use).

When we bought a van with a lift, it took up one and half spaces in our garage.

When she left the house, she carried her feeding pump and formula, her computer with speech generating software, and a backpack fully loaded with bulky medical supplies and medications to last at least three days in case of an earthquake. When she was in high school, the school nurse insisted she carry a portable oxygen tank in case of seizures. My daughter’s physicians explained to the nurse that the oxygen wasn’t necessary, but the nurse insisted. She would carry the oxygen or not attend school. She was like the snail in the children’s book by Leonni who carried his house on his back. The heavy load added to the complexity of finding and retaining appropriate aides who didn’t sign-up to be Sherpas. Maybe it would have helped to have a relationship with a local nursing school.

My daughter died last year. We gave all of her medical equipment and supplies, books, and clothes to people in need. Closets are empty. If I wanted to live in New York, I’d offer a trade. Thank you for your story.