I Am Lost/ I Am Home

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I thought it was a sprain to his back leaving him unable to be stand at the mic and be the master of ceremonies at our parent's 50th Wedding Anniversary in February. My brother Topher, always the natural choice for all things art, culture and entertainment in our family, instead took his perennial place behind the piano and I carried on in his place.

"What is going on with your back?" I whispered to him as Jesse and Lucy hosted the anniversary trivia and giveaway game from stage.

"I don't know. But it hurts."

Though he's had a history of back problems, I had never seen him so uncomfortable.

"I should probably ditch the e.e. cummings poem I was going to read," I said nervously. Though some of us picked up on our mother's love of literature, our general population is more versed in sports and sarcasm. In our group settings, poetry feels out of place. Unless you count our brother Matt's tribute poetry which mostly consists rhyming lines like: We love him with all our hearts/Until we have to smell his farts."

"No, you have to read it," he said. "We need this in our family."

When the game was over, I stood up to fulfill my new emcee responsibilities and heard my brother--ever the director--egg me on, "Read the poem!"

So I read it. I cried. My mother cried. And when the party was over and we started to clean up the place Topher said to me, "I am so glad you read it. It was my favorite part of the whole night. I took a picture."

You really couldn't name very many people in my life who could make me feel like I had won a Nobel Peace Prize just for making my way through a poem with tears and shaky voice, but it was good as any reward when my brother said it to me.

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A month later my family found ourselves back together again, reunited in our parent's soft-lit living room, late on Easter evening. Topher and Lisa held hands sitting on chairs in the front of the room. We had been beckoned together for an emergency announcement. Topher started, smiling (how was he smiling?)

"I have been diagnosed with ALS. Lou Gehrig's Disease," he said.

And that moment, I replay over and over again. Over and over and over and over and over again.

Because it doesn't make sense, right?

This disease is killing my brother who is bigger than life. Who, in his forty-three years married an actress, had five children, spent summers in London, wound his way through a PhD, directed hundreds of plays, wrote his own plays, won awards, won friends, won everyone's hearts.

So I heard the words, but they didn't settle in my head. They just floated around, like feathers with no rush to land.

At first I felt fine (shell shocked) and my first instinct was to organize something (helplessness) and for days after I sifted plans in my mind (avoidance). Start a website! Start a blog! Start a facebook group!

I watched Topher and Lisa in their optimism and humor. I observed how generous they are about letting people into their story. I asked them if I could write about what was going on. I thought about writing about it a lot. I decided this summer that I would weather any impending tragedy by writing. I had a plan in place. I was prepared. But I could not shake the shock I felt--the constant buzzing sensation you feel in between that place of fight or flight.

I wrote emails to everyone I knew with an ALS story: tell me what it was like for you when you heard the news. Tell me what you felt. When did it hit you?

And then one day at work, in the afternoon  I got a text from my brother. And I realized, there's a finite amount of texts I would get from him in the next few years. After that, I wouldn't get any. I wouldn't go see his plays, I wouldn't have the hours after his plays when we deconstruct everything. I will have to say good bye to a relationship that has sustained and pulled me and made me feel safe in a sea of siblings. How many times has Topher been my life raft, the commiserate who understood what it was like to feel so very different in a family of deeply shared values?

And then the words ("I have ALS. Lou Gehrig's Disease") finally landed like an anvil on my consciousness. Then the deluge of tears came. I realized that home is being with people who make you feel ok about who you are and being lost is not having them around. I am not home if my brother Topher isn't there too. And that feeling wakes me up in the morning. That feeling sticks around even as we carry on in our lives.

The feeling, always at the end of the day: we're losing the poetry in our family.


e.e. cummings 

if there are any heavens my mother will(all by herself)have
one. It will not be a pansy heaven nor
a fragile heaven of lilies-of-the-valley but
it will be a heaven of blackred roses

my father will be(deep like a rose
tall like a rose)

standing near my

swaying over her
with eyes which are really petals and see

nothing with the face of a poet really which
is a flower and not a face with
which whisper
This is my beloved my

   (suddenly in sunlight

he will bow,

&the whole garden will bow)

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