I Am in Here (16 page)

In those mountains I felt small, and it reminded me that despite our best efforts to understand the nature of God, we are like ants contemplating the universe. Albert Einstein wrote, “My religion consists of a humble admiration of the illimitable superior spirit who reveals Himself in the slight details we are able to perceive with our frail and feeble minds.”
[1]

  
The Hawk
  

I saw a hawk.

Did he see me?

Each of us questioning

How it should be

For me to be him

And him to be me.

Flying up so very high

Watching as life goes by.

People are always thinking about how things should be better. Some even wish they were someone else. Everyone deals with different challenges. We have to appreciate people and their life journeys no matter what they might be
.

From her first conversations with Soma, we learned that Elizabeth contemplated God and humanity's relationship to the divine in a way that went beyond what she learned in Sunday school. In 2006, at our third camp with Soma, Elizabeth was asked what she would like to talk about, and she replied, “
Tookie Williams
.” I was shocked. Days before, Tookie had been executed for multiple murders in spite of his profession of innocence and faith as well as his work toward ending gang violence, which earned him nominations for the Nobel Peace Prize.

Elizabeth's ability to plumb the depths of life is, at times, arresting:

  
Cycle of Life
  

Today is yesterday's growing up,

And it is the same sun rising up.

It never ends.

The cycle of life

With the good and the strife,

We all must take this journey.

That is what life is all about.

Life is a journey. We all must take it. Do the best that you can.

During my year studying in Southeast Asia, I learned about the cycle of life. Suffering is a central theme of Tibetan Buddhism, and in a way, it is relevant to any family fighting the scourge of autism. Buddhism's Four Noble Truths comprise the essence of the Buddha's teachings: (1) the truth of suffering, (2) the truth of the cause of suffering, (3) the truth of the end of suffering, and (4) the truth of the path that leads to the end of suffering.

M. Scott Peck translated this great truth in his simple yet profound statement “Life is difficult.” In
The Road Less Traveled
, Peck continues: “This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we
transcend it. Once we truly know that life is difficult—once we truly understand and accept it—then life is no longer difficult.”
[2]

  
Life's Struggles
  

In a tunnel dark and dreary

Then I start to feel very weary.

All of a sudden I see a light

And then I start to feel all right.

Life is full of twists and turns,

Getting ahead and being burned.

Experience is the only way to learn.

Sometimes life is tough. We even struggle to do the things we love, even writing poetry.

As a young theology student, Rabbi Harold Kushner struggled with the idea of suffering as presented in the book of Job. But it was not until he was told that his three-year-old son, Aaron, would die of a rare disease by his early teens that he felt suffering's grip on his heart.

After Aaron's death, Rabbi Kushner tried to make sense of his own suffering as well as suffering in the world by writing
When Bad Things Happen to Good People
. He recognized the great chasm that suffering can create between ourselves and God as well as between ourselves and our loved ones. This passage from its introduction resonates in my soul:

I would write [this book] for all those people who wanted to go on believing, but whose anger at God made it hard for them to
hold on to their faith and be comforted by religion. And I would write it for all those people whose love of God and devotion to Him led them to blame themselves for their suffering and persuade themselves that they deserved it.
[3]

This passage means so much because it speaks to two fundamental issues that autism parents want to be assured of: (1) God loves us, and (2) autism isn't our fault. God isn't punishing us or our children. We are not to blame for our child's illness. Some combination of genetic predisposition and environmental triggers led to this suffering in the world. God is in the midst of it, but how?

The suffering of the innocent poses a great challenge for anyone who believes in God, because it has a tendency to force us to choose, consciously or unconsciously, between two equally unattractive ways of thinking about God: If suffering is beyond God's control, is God really all-powerful? Or, if God wants the innocent to suffer, is God really good? We want God to make sense to us, to behave in conformity to our expectations. We don't want to choose between an ineffective God and an uncaring one.

In the end, though, God can't be defined by the limitations of our expectations. We see this in the book of Exodus. When Moses asks God what his name is, God simply replies, “I
AM WHO
I
AM
” (3:14). We try our best to explain God or put the divine in a logical box, but God's vastness surpasses our limited human capacity. I want God to be both all-powerful and all-good as I understand those terms. We all want God to be a lot of things, but God tells us, “I am who I am.”

So why does God allow suffering in the world? I don't know, but I believe that God sees our suffering and feels our pain. God did not leave us here to wallow alone in meaningless despair.
“Likewise, the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words” (Rom. 8:26 NRSV). On many days, my prayers are more sighs than words.

Since leaving Harvard, I have grown more comfortable admitting to my ignorance, sometimes several times a day. The Harvard ethos is much more “fake it till you make it.” Any crack in the know-it-all façade was an invitation for a verbal tar-and-feathering. Saying “I don't know”—well, think of a shark tank at feeding time.

I now realize that my mind is not capable of even asking the right questions about God. I don't think I am ever going to understand why there is suffering in the world. For me, the allegory of the good mother and her baby enables me to make some sense of our suffering. It goes like this: The baby often can't understand why the good mother does what she does. The baby may scream with unhappiness, but the good mother has a plan and has her reasons. The good mother's plan, however, doesn't mean that the baby doesn't have the ability to make choices. When the baby makes a bad choice, the good mother weeps.

Elizabeth doesn't just question suffering in the world; she wants to take a stand to end it. When Elizabeth was in third grade, Terri told us that she started sobbing in school for no apparent reason. After school we asked her to write a poem about what she was feeling. This is what she wrote:

  
Your Insides
  

A cry, a tear,

A trail of fear.

The pain inside

Too strong to hide.

A sigh,

Oh my.

Why?

For months it tore me up that her autism was causing her such pain. Finally we asked her for an explanation, and she told us that it wasn't about her suffering at all:

When I wrote this poem I was inspired by the war in Iraq. As children growing up in the United States we don't hear bombs or guns firing. I feel a terrible sadness in my heart for these children who live in fear and don't know why
.

Recently Temple Grandin asked Elizabeth how she, as a person with autism, might perceive the world differently. Elizabeth responded, “
I am more sensitive to what is going on around me. I feel others' pain and suffering
.”

In her poem “Make a Change” at the beginning of this chapter, Elizabeth tells us that she needs a voice to be heard. She wants to advocate for peace and for war to cease. As part of our effort to give her a voice, we were able to highlight her poetry in a PBS television segment on
Religion & Ethics Newsweekly
in October 2009. The roots of that show began in Tibet more than twenty years earlier.

During three months of wandering in China, I thought that my Buddhist studies would benefit from a side trip to Tibet. At the airport in Chengdu, China, I was lost in the large crowd of locals milling around until I spied one other
gweilo
(roughly translated “foreign devil”) who looked hopelessly frustrated at the ticket counter.

I propped my large, external-frame backpack against the wall and wandered over. This gentleman had a ticket to fly to Tibet on the same flight as mine, but he didn't speak a word of Chinese, so for him, no seat was available. By this time, traveling alone, I had picked up enough Mandarin to manage basic travel talk. (“Where is the toilet?” “Can I buy one ticket to Tibet, please?” “Could I have the chicken, not dog, thank you?”)

The stranger, who introduced himself as Charlie, did not seem to have much confidence in my meager language abilities but figured that he had nothing to lose. After many repetitions of “thank you so very, very much” and “you are so very, very kind,” the gentleman had his seat.

A few hours later, I arrived in an exotic land and settled into the cheapest hotel in town. The electricity was sporadic and the hot water nonexistent, but I met a new friend, Hayes, and we enjoyed exploring the city's temples and bazaars. A few days later, Hayes and I ran into my airport friend, Charlie, in the main square, and he revealed that he was a producer with NBC News, scouting a story for Tom Brokaw. He had a driver, interpreter, and guide with him and invited us to join him for a day-trip to visit a Buddhist lama living in a mountainside cave.

To top it off, Charlie had a golden ticket: a set of Polaroid photos of himself with the Dalai Lama, the exiled king and god
of Tibetan Buddhism. The Dalai Lama fled Tibet in 1959 after the Chinese army invaded and took control. Even though he lives in exile in India, the Dalai Lama is still revered in Tibet. Everyone we met, whether monks in temples or herders tending their yaks, pressed the photos to their foreheads and opened their hearts to Charlie. No topic was off-limits.

During the Cultural Revolution, thousands of Buddhist monks were imprisoned or killed. Others were forced to marry and find a civilian occupation. In one isolated village, Charlie asked a former monk, “Would you go back to being a monk if they allowed it?”

Without hesitation, with his wife within earshot, he answered, “Yes!”

I witnessed enough of this heartfelt honesty to solidify my connection with both those Buddhist monks and this Irish-Catholic TV producer.

Our lives spun in separate orbits, but Charlie and I stayed connected over the years through occasional emails and phone calls. When he retired from NBC, I asked him if he could help me produce a couple of YouTube videos focused on Elizabeth's poetry. I hoped they might inspire other autism parents and their children. Instead, Charlie went one better. He, an Emmy Award–winning crew, and correspondent Bob Faw put together a beautiful PBS story that can still be viewed by visiting the PBS
Religion & Ethics Newsweekly
website and searching for “autistic poet.”

Who knew that a chance meeting on “the roof of the world” would help give my daughter a voice more than twenty years later?

After the show aired, Charlie exchanged emails with Elizabeth to get her reaction. As usual, she said a lot with few words in the following exchange: