Monday, September 1, 2008

Remembering Scott. Remembering Acceptance.

Dean, Scott, and me, in the elevator at the Edgemar complex in Santa Monica, May 17 2003. It was my 31st birthday, five weeks before Pablo's birth. We were all high on Peet's coffee.

My big brother Scott passed away on Saturday, September 2 2004—four years ago today. It was the Saturday of Labor Day weekend, a relatively quiet time in Chicago. Northwestern University Memorial Hospital is a block off Michigan Avenue, the highest of high streets in Chicago. I remember leaving the hospital with Jo Ann, and the strange and scary calm and quiet of the streets mirrored the feelings inside me as I exited a building for the first time without my big brother breathing inside. My idol, my leader, my beacon since 1972, was leaving via a different door. I could not and still can't imagine what the next 24 hours were like for him. But I know he left this world the same way he came in: breathing, one short, shallow breath at a time, reaching with his eyes for me, Dean and our father. He held our dad's hand, and was leaning toward him on his right side. In the last few minutes of Scott's life, I looked into his eyes and saw him: everything he was, that he had wanted to be, the child who yearned to be heard and accepted waiting calmly inside the body of a man who fought for acceptance so often in his life.

Nonbelievers will not believe, but I saw God inside him that morning. God, as I understood God, was acceptance, was letting go, was putting the pin back in the grenade, was mending and yearning for life. I could write all day about what I saw, what I felt, in Scott's dying hour (notice I didn't say what I thought—the intellect has no place in the room of a dying man; intellect is for remembering what time to catch the train or how to order coffee and eggs—hardly useful when someone you love is passing away before you).

The simple message is that his dying was about breath. The simple, pure breath, and the slowing of it. In life we are never doing something always. Nothing except breathing. When the breath stops, life is at an end. If we follow the breath, and learn to ride it instead of fighting it, we give ourselves the chance to see life with our heads and our hearts open and absorb what the world has to offer. This is news I need to hear, because I often step through the day trying to control.

Here are some memories of Scott's final stage in life. I know this is sad, but also beautiful, and certainly real and full of hope. Hope is the main thing.

¶ Isabella started preschool the day after Labor Day. I walked her to
Old St Mary's school that morning. Susan was dealing with the myriad phone calls and arrangements that only she could handle as Scott's wife. As we walked to school, I stayed in the moment (the only place children live in), and soaked up Isabella's joy and excitement. Scott was so happy that he and Susan were able to enroll Isabella in that school. To change the

¶ One night when we were still camped out at his house, I was attaching his TPN drip (ie, food) to his chest port, he put his hands around the back of my neck. His voice was so quiet that he had to pull my ear next to his mouth.
He told me to write a book about my experiences in life. "You have to tell our story," he said. He wasn't asking me. He was giving me a dying wish. I have been slow to take action on making this wish a reality. While I was honored and eerily humbled by Scott's insistent instruction. I have also been scared to death to put myself out there. This blog has broken that spell of fear in a major way. Who would have ever guessed that my love of writing would place me here, documenting my son's fight with cancer, on a blog? When Scott urged me to write about our lives, and his struggle with cancer, I'd never even heard of a blog!

¶ I used to think I'd remember every small detail of every moment. Four years on, I don't remember the date or the name of the hospital without checking. This is a good thing, believe me. The weight of memory is sometimes crushing. My mind is already being pulled in the direction of family, marriage, business, recovery, cycling, drinking too much espresso, which shoe to I put on first, etc. It's only bad if I judge myself for not recalling (which is often).

¶ Scott's cancer was unlike Pablo's in every way, save for the fact that it was cancer and it was in his abdomen. Pablo's cancer is highly curable. When Scott's cancer was found—remarkably, a month after a comprehensive executive physical—it was terminal. He did chemotherapy not with a hope to quell the biological chaos in his gut, but to elongate the short life expectancy he was given in his diagnosis at Mayo Clinic. His daughter Isabella was three, and he wanted to have as much time as possible with her, and his wife Susan.

Scott's plan worked. He and Susan were able to take Isabella to many of places she would have gone with them during her upbringing. Mount Rushmore, Disneyland, Legoland, hanging with her cousins in LA, a summer holiday in Michigan, hanging with family in Milwaukee and Joliet. There may have been other trips that I don't remember. But you get the point. Scott wanted to give Isabella experiences she could hold onto, that would pave a path of robust, joyful memories for her in the future.

¶ Scott endured the (in his case) extreme chemo treatments. He'd do two full days at the outpatient clinic. He'd take a cab or the bus. At some point I'm sure he walked down Michigan Avenue from his home, which was south of Grant Park, adjacent to Soldier Field. I remember him saying that he wanted to soak up the city's delicious architecture and texture before being locked in a luxury chemo recliner for up to eight hours. We'd schedule calls for his chemo days. His time in the chair was the perfect time to talk. Talking was Scott's favorite thing (not a surprise for those who know me). We recorded many hours of in-person conversations on iPod, but none of our phone chats were documented.

The chemo tore him up. After his chemo days, he'd be out of it for a day, sometimes three. Tired, sick, flattened. Then he'd be up like a rocket, ready to attack more of the items on his innumerable TO DO lists. Susan would know how many of these lists he had. I saved some of them when he passed away. Scott would call me at all hours, ready to plan a trip, or tell me what he'd been up to. We were starting Dangerbird around that time, and he would excitedly call me and Peter with ideas on how he could to be involved in the business.

¶ Another positive link between Scott and Pablo is experiences. We want to give Pablo and Grady every fun, exciting, life-provoking experience. We've always been into that. Some summers, Grady's gone to so many camps, I've wondered if he wanted to go to 'Camp Sleep and Rest'! What I think about the most as Pablo lies in a hospital bed recovering from surgery is how much I want to DO with him! Imagining how much fun we'll have is a wonderful motivator, and keeps me out of the dumps.

¶ I want to end this Scott memorial post on a bright note. What he taught me most is acceptance. Many hours of every month, acceptance is nearly impossible for me. When it comes to Pablo's cancer, acceptance is the only state that doesn't want from us, that doesn't complicate everything around us, that doesn't keep us up at night. When we are in acceptance, we do not want. Want is heavy and demanding and is the gateway to pain and dis-ease. I've spent too much time in this state over the past week. I am saying HERE and NOW: EFF THAT!

So, I am putting myself on notice: acceptance is at odds with fretting, fearing, loathing and being generally grumpy and miserable. Acceptance is at odds with control. Control is that knot in my gut. Control is me wanting to blast the drunk guy who walked in front of my car on the way home the other night.

The way to untie that knot is to accept.

To wave the flag of acceptance is to b r e a t h e .

We love you Scott. And we pray for your continued presence and protection in your nephew's heart and breath.


Jules said...

Wow....acceptance. I think we could all learn a lot from your post. In fact, I copied & pasted a few lines as a reminder to myself: just let things be, stop trying to control everything.

I'm sure your brother is honored by the things you write about him and is surely shining down on Pablo and your family.

Dawn: said...

Thank you for this beautiful post and reminder of something I need to hear every day. I love what you said about riding the breath and how acceptance is at odds with fearing. Wonderful.