I Am in Here (10 page)

When she was in third grade, Soma asked her, “How is school going for you?” She replied: “
School is not a good place some days. Other days it is fine. I can get so scared when I see other girls talking. I try hard, hard but can't talk. I can't say a thing and sometimes I freeze in front of the letterboard. I don't like being watched. I am most of the time
.” These are precious words for me, however difficult they are to hear. They give me a window into her silent world.

Despite these personal challenges, Elizabeth continues to reach out to others through her poetry.
Autism
is derived from a Greek word meaning “self” because autism is associated with the person being self-absorbed. Upon meeting Elizabeth, you could easily interpret her silence and obsession with videos as self-absorption. Her poetry tells us the opposite is true.

  
Friends
  

My friends are there for me

Just like it should be.

Having a good time,

Better friends you will not find.

This is very dear to me

Because I feel that I am free

To be the way I want to be

And still be liked, you see.

I finally have friends and I like it. To me a friend is someone who is kind. They accept me as I am and want to be with me anyway. To me, that is someone I can trust and rely on
.

Elizabeth has the effect of drawing those around her out of their world of self-sufficiency and into a world of compassion and connectedness. In her poem “Compassion” at the beginning of this chapter, Elizabeth tells us to pray for each other because we are all carrying heavy loads. She looks beyond her own physical and mental burdens of autism and wants us to remember those who are sick, lonely, and hungry. Sometimes when I'm feeling sorry for myself, I remember that Elizabeth doesn't dwell on her problems. She reaches out to others with compassion.

In her poetry, Elizabeth expresses a sense of community and our shared humanity. She needs help with daily tasks such as buttoning her coat and tying her shoes, and she appreciates the help she receives.

  
Special People
  

I am so blessed.

Whenever I am stressed

There are people there for me.

I can see

Their love and support

Surround me

And I can face the world

And all that it sends my way.

I need to say “thank you.”

Being autistic in a mainstream classroom can be stressful and frustrating at times. I have been blessed with people who care about me and help me to work through my problems. I just want to say “thank you
.”

When I feel all alone in the battle, I think about the special people in our lives and, like Elizabeth, I try to “
see their love and support surround me
.” In addition to family and friends, two groups have provided great support to me in this autism battle: my Select Literate Friends and Dr. Moms.

Every year for more than seventeen years running, the facetiously named Select Literate Friends (SLF) has come together as a community on paper. My dear friend and fellow venture capitalist, Fred, started SLF because he was on the hunt for great books and asked a few friends to email him a list of their top ten favorite books. From the 153 of us who participated that first year, the network effect of each friend telling a few friends who
told a few friends (on top of Fred's tireless recruiting) has created a community. At first we were united by our love of books, but we have now shared all sorts of other silly and serious slices of our lives. You might consider spreading this idea. Ask a few friends to swap their top ten book lists, and it could blossom into an SLF community of your own.

In the beginning of SLF, I followed the suggested topic such as top ten movies or places; then the chaos of autism hit and I just could not find the words. Like Elizabeth, I had no voice of my own to share. So what did I do? I did exactly what Elizabeth did. I found my voice through poetry.

In 1999, I submitted my favorite poem, William Wordsworth's “Ode: Imitations of Immortality.” I sent in the whole ode, all 208 lines of it, for my SLFs to bask in its glory. Extracting only a few lines of this masterpiece and having it make sense is a challenge, but I want to share them with you, my new Select Literate Friends.

Wordsworth beautifully captures the arc of human experience as well as his love of nature, God as our home, lost innocence, gained perspective, suffering, kindness, and thanksgiving. In college I studied this poem, but I had a hard time writing the required paper because it was so awe-inspiring. I felt the ode with my heart, not my head.

After years of submitting the writings of others to SLF, I found my voice only after Elizabeth found hers on the letterboard. Mine was a weak, squeaky voice in that first autism journey letter. As Wordsworth ministered in his “Ode,” I tried not to grieve but to find strength in what was left behind. We were still suffering, but we had thanks to give, and I gave it in those letters.

After all our SLF submissions are sent in, Fred binds them and sends them to all the participants as a Christmas gift. The SLF entries include contact information so we can communicate with each other between the annual letters. In the years that this group has followed our autism journey, I have received precious emails and phone calls cheering us on. Most ask if they can share
Elizabeth's story and poetry with a friend or family member who has a child with autism.

Fred has often told me how he is tickled by the connections his hobby has created. The year Fred selected the topic of “heroes,” he was overwhelmed with stories of adult children finally being able to tell their mom or dad how they felt about them. There were stories about teacher heroes, business heroes, and grandparent heroes as well.

Letter writing has become a lost art, but thanks to Fred's hobby, we all stop for a moment and tell someone how much they mean to us. Years from now, these letters will be our legacy, our love notes to the future.

SLF helped me find my voice and write such a letter to my dad when he became ill. Although my brother, my sister, and I all knew he loved us, Dad had a hard time telling us. Maybe it was his upbringing by alcoholic parents who didn't think boys should show their emotions. Maybe it was three years in the Marines where softness was scorned. For whatever reason, Dad told us he loved us by fixing a toilet or rewiring a light switch, not by uttering the words. As Elizabeth has shown me, some communication goes beyond words.

But I did want my father to hear those words from me before I lost the chance to say them, so with Fred's inspiration, I sat down and wrote him a letter, telling him everything that was on my heart and how grateful I was for the memories that we had shared and the lessons he had taught me. My letter concluded with the words that were so difficult for him to say: I love you.

I carried that letter with me for weeks, looking for the right time to give it to him. My dad rose before dawn to start work each morning, so I knew he was very ill when he could no longer work the register at my parents' antique cooperative. His breathing
had become labored. One quiet evening, I tearfully handed him the letter. After reading it, he had a tear in his eye too.

Elizabeth was only a year old when her Poppie died, but she will have that special letter to remember him.

After almost two decades, the bonds that these SLF letters have created are so strong that Fred now hosts a weekend gathering every other summer at his home in rural Pennsylvania. Many SLFs happen to have staggering musical capabilities, so there is always someone on the makeshift stage singing or playing an instrument or both. The heartiest of the group pitch tents and spend the night down by his frog pond.

What I haven't told you about Fred is that he has had his own share of suffering, and he too is a How Person.

Fred was born with his heart upside down and backward. I know the doctors in the audience are saying, “Yeah, right.” But Fred and his cardiologists swear to it, and I have seen the pictures.

A few years back, the good doctors advised Fred to get a defibrillator implanted in his chest. He has done so twice (thanks to a product recall) and lives every day to its fullest. And for Fred, “fullest” doesn't mean European vacations, but it means connecting with people.

Malcolm Gladwell had people like Fred in mind when he defined “Connectors” in his book
The Tipping Point
as “people with a special gift for bringing the world together.”
[2]
Besides gathering SLF submissions annually, Fred sends out numerous newspaper clippings, YouTube video links, photos, and anything else that he thinks will entertain or educate his wide circle of friends.

Fred was the first friend I called when I got the news about the children having autism. Knowing he has a special-needs child himself, I had to hear his “How” voice telling me that one could
survive such a blow. He was there for me in my initial terror. Every time a shell-shocked mom with a newly diagnosed child calls or emails me, I remember Fred's calm, reassuring voice, and I try to give them hope. I send them one of Elizabeth's poems and tell them to remember that their child is in there.

Children with autism need for us to keep trying to connect with them. Sometimes these connections are highly unusual: a touch of the hand, a walk without words, watching videos together. Unusual connections—that brings me back to Al and Junior.

After our dear friend Junior passed away from tuberculosis, Al moved into a nursing home. I visited him as often as I could, but autism's turmoil was already upon us. On particularly ambitious days, I brought the children with me. Al shared a special kinship with Elizabeth. Without words, they were at peace with each other.

My last visit with Al was not easy. He could not move any part of his body. I just held his clenched hand in silence. He knew I was there.

A week later, his brother called to say that he had passed on. After a life filled with both struggle and joy, Al was with God. I can see him there, in a glorious new body, without the wheelchair, without his tortured body. He speaks perfectly clearly. That is the way God has always seen him and heard him. That is the way that God sees and hears Elizabeth: fearfully and wonderfully made.

Listening to Trees in Harvard Yard