Monday, May 23, 2011

Writing writing

I'm writing work things and papers and lecture notes and reflections but I'm not writing writing.
Writing involves sitting still, with hands and mind working together. Writing writing is sitting still with me, with hands and mind working together with my internal compass. Writing writing orients me in the right direction in the same way that migrating birds are directed by something internal. Writing gets me where I set my mind to go, but writing writing brings me back to where I am.

Sunday, May 22, 2011

I Have A Sister

I have a sister named Kelly. She is my younger sister. She is my first memory.

My mother lays my newborn sister on her back on my parents bed. I am laying on my stomach, head resting in hands, repeatedly criss-crossing my bent legs with excitement. I am positioned at the top of her head, nose buried in her tiny wisps of hair. She smells like freshly baked sugar cookies to my three year old nose and I cannot stop myself from repeatedly kissing her head. When she looks at me and smiles, my heart races and I report this amazing feat with the typical toddler glee of a new big sister. My mother says she is too little to smile yet and it was gas. I know better. I know I made my sister smile and it sinks deep within my heart.

There have been fifty years between that memory and today. Fifty years of growing up and immaturity, laughing and crying, fighting and defending, standing and stooping. Fifty years that seemed like a hundred on some days and only a few moments on others. Fifty years.

Fourteen years ago, Kelly was diagnosed with Hemangiopericytoma. An extremely rare cancer. So rare in fact, the best doctors in California misdiagnosed it as a benign brain tumor. It wasn’t until ten years later, they finally realized what it actually was. The news was not good. They had only seen minimal cases due to it’s rarity and no one had survived past ten years. There was really no known treatment that could change that. Or so they said.

My older sister Char and I jumped online and researched Hemangiopericytoma, hospitals that dealt with it and doctors who specialized in killing it. We found MDAnderson. So, for the last four years we have met in Houston every three months. There have been major surgeries, clinical trials, tears, fears and laughter. Oh Lord, has there ever been laughter.

Last week, I flew to Houston to meet my sister Kelly at MDAnderson. She had a bad feeling about this trip. She kept saying it every time I called beforehand. I did what I am known for doing. I made light of it, changed the subject, made her laugh.

I called Kelly last night on my way home from work. I wanted to know if she had heard anything yet on the test results. She had. I knew before I even asked. I knew. I knew in Houston. I told my brother-in-law when we were walking over to get Kelly from her MRI.

“David, something just isn’t right. Maybe I’m just tired and I can’t put my finger on it but something doesn’t seem right.”

I made David promise not to tell Kelly what I had said as if that would make it go away.

Last night on my drive home from work, I called Kelly like I almost always do.

“Hey Kel, how ya feeling?”


“What’s wrong?”

The radiation in March had worked well on her spine. The brain tumor had grown but not drastically. She could have a seventh brain surgery to remove the tumor…again. That was the good news she said.

“ Weinberg said my lungs are bad. They couldn’t handle a surgery.”

“What? Your lungs are bad? Your lungs aren’t bad.”

“Marla, the tests say my lungs and liver are bad.”

“Ok, so what are they going to do. How are they going to fix this?”

“Three more months of chemo, then back for results. If that doesn’t work, there’s nothing more they can do.”

I rarely cry. It’s the hand my sister dealt me awhile back. Everyone was always crying over her and she did not want me crying. She wanted me to make everyone smile again. So I did. For the last fourteen years. Until last night.

I screamed at my baby sister on the phone last night. I pulled my car over to the side of the road and I screamed through burning, hot tears.

“You cannot leave me here alone! You cannot! I can’t do this without you!”

“Marla, you’re not helping.”

“I don’t care, you can’t leave me here. I can’t talk to you right now.”

We both hung up without another word.

I dreamt about Kelly last night. It was a dream about something that had happened in Houston last week. We were in the hotel room getting ready for one of her appointments. She was having trouble with her right hand and said she thought one of the doctors was probably right. She believed she would be paralyzed and unable to write one day.

“Whatever Kelly. You never could write anyway.”

Kelly started to cry and said, “You just don’t want to hear the truth.”

I dreamt about that conversation last night. I dreamt about how I felt punched in the stomach at her words because they were true. I saw myself in the dream doing what I had done in reality.

As I stood next to her wheelchair with my arms wrapped around her, I buried my nose in her red hair and kissed the top of her head repeatedly.