Friday, August 5, 2016

What Nick Taught Me

When I think of Nick’s death, I think of his wife who was driving the boat. The way she dove into the water. Over. And over. The panic she must have felt when she could not find his drowning body. I don’t think about what it might be like to have only water in your throat. I think about what it would be like to have only water in your hands.

I have been in a lifelong relationship with tragic death. I have 100 Nicks. Each with their own set of images burned in my mind. Hundreds of images visit me when I’m driving, grocery shopping, or standing on the edge of a cliff. Tragic death is the fiber of my daily life as sure as it has ripped me open more times than I even know how to count. It no longer matters if I know today’s Nick. Every new death, a new Nick who may as well be my sister hanging behind the house that I grew up in. I am in the club of knowing raw grief from tragic death.

When I think about my sister’s death, I don’t think about the tension in the sheet that broke her neck, I think about the release of tension when my father cut her down.  I think about how it felt to live in my body while sitting in my parent’s kitchen separated from her by nothing but a glass door for the last time. Watching the body bag zipped—what has come to represent the threshold of the universes that will forever separate me from her. This is the stuff that my bones are made of. When you tell me I am a force, I tell you every molecule of tragedy I have known has made me so.

When my mom drove me home from the doctor visit where I found out I had a diagnosis that carries a higher likelihood of death than any other cancer, I remember looking out the window at the landscape of Lake Street, in a city I have known all of my nearly half decade of days, and thinking, “How fascinating…I think I just found out how I am going to die.” I wondered if the landscape of McDonald's and the old bar across the street looked different through dying eyes. It was too new, I couldn't know the answer. Getting to ponder all of this is a gift. The gift of possibly not being ripped from this world tragically was not lost on me.

On the corner of my block is a free community art studio run by a survivor of the 35W bridge collapse. I understand that. Called to the edge of life, I find nothing there to protect or keep secret. The only thing that feels important is making my art. The edge is a place where I learn that breathing is making art. Breathing calls me to be me while I am. The edge strips me of my masks and shows me how useless they are here and now. In this lifetime, this is the only me I get to be. Everything I add to this lifetime is art. I understand being called to make my art, whatever that may be and to help facilitate other people living and making their art.  

I know tragic death. Your worth is so immense that it breaks my heart. I am fierce in loving Every. Fucking. Thing. When you are ripped from me, whoever you are, I carry you with me always. If I can love you this fiercely, it makes it impossible for me to not believe my own worth. So push me to the edge of this life and tell me that breathing might not always be my art. I will think not just about death, but about living. Living as me. Quirky, loving, weird, fierce, imperfect, and broken: Me.

When I think about living, it doesn’t have to be more exciting than this right here. My son is whistling in a high pitch and cutting fabric with expensive fabric scissors that are one of the best tools I own. I learned to sew from my father. It warms my heart to be passing on something special to my son. But I could have missed the art because of the goddamn whistling that makes the sweetness almost unbearable. My life sometimes feels like a patchwork of tragedy and high pitched whistling, but the gifts death has brought to my life help me see love and art in everything. 

Monday, February 29, 2016


I am picking her up from work. She gets in the car and closes the door. “Hi, how are you?” I ask. “I had a hard day,” she answers. That’s it.

In our family, a car is like a magic space. Sometimes, we like to take road trips and blast music while we all sing along. While we sing, everything falls away--there is no pain or injustice, even if it's just for a moment. At other times, when anxiety hits and I don’t know how to support her, we get in the car. Driving creates space that we don’t find in the confined boxes of homes or businesses. Driving loosens what is tying nerves into knots. We notice nature. We talk about trees, sky, and water. We talk about the big stuff. Sometimes the car has the magic ability to create the space and comfort that I want to offer her as a parent.

Then, there are times when the car makes me feel the hugeness and pain of the space that separates us.

When she shuts the door, I know that this will be a quiet drive. Still, I take the parkway where I feel the trees and water offer their assistance to me through my memories of their comfort and connection.  I point out how the clouds make the sky look striped. She remains silent. I feel like if I say another word, it will probably trigger frustration-she needs quiet. So, I say nothing.

She comes in the house and goes to her room. Closes the door.  There are so many days lately when she closes the door to her room. I get it, this is the life of a 19-year-old, and still…. I want to put her back in the car and run away forever. Drive to the edge of the most beautiful place on earth. And live, live, live with her! Instead, I am on the other side of her closed door.

I can feel her broken heart from the living room and I can’t save her. My cancer is a huge part of the brokenness of her heart and I don’t know what to do. This experience might be the most painful part of my life right now. I know what I can do about cancer—it is specific and measurable. When my problem is the infinite space that separates me and this precious human--the closest living thing to me--I feel clueless. It feels like everything and nothing is both possible and needed. I haven’t got a clue how to bridge love and separation. Sometimes I feel like my sum total is hurt plus more hurt.

I think about turning on the TV. I wonder, will it help? How long until it will distract me from this reality?

Sometimes, all I want is to connect and watch my daughter enjoy the freedom of following her own passions with or without me. Sometimes all I want is to not feel like I am the only one who washes dishes in this house. Mostly, I want to know what to do with this space between us. How to honor it, challenge it, accept it, and change it. Paradoxically, I can’t change it, and I refuse to accept it.

I decide against the TV. I knock on her door and ask if I can snuggle with her. After a few minutes of silent settling in, I realize that right now, our physical contact is the most beautiful place on earth. This is not a metaphor. Sometimes, it doesn't take our car to make magic. In my family, sometimes this is what living looks like. 

Post Script: Tonight, after reading this, she came out of her room (where the door was closed) and said, "I'm mad about the dishes part." She came to me, fell into my chest, and sobbed. Eventually, through tears she said, "I am so tired of cancer." I told her: I know, me too. "No. I don't think you know how much I hate it." We cried. I love her. She said she loved what I wrote. Sometimes telling stories helps us break through the silence and space between us. <3

Wednesday, February 17, 2016

Deepening the Learning

I came home from witch camp with some new promises: I promise to write more. I promise to dance more. I promise to take better care of the earth that is my body and the earth that is all around. So I am writing and letting go of attachment to outcome.

The day after coming home, I had scans. Today I got the results.

Here is what the doctor said, "Your scans are…Stablish." My cancer is growing, there has been a little growth in the past six weeks. I knew this day was coming--but it was not possible to predict how living with this information would feel. Feelings are complicated. I feel ready to "deal" with cancer. I feel sad that cancer is progressing. I feel scared about telling people. Especially my daughter. And I feel pissed that I didn't wear the socks that Willow made me. Every other time I have been in this office I have had them on. Every other time, the news has been good.

When this drug that I am on stops working (which I knew from the get go that it would), I have other drugs to try. They are coming out with new drugs for the ALK mutation that I have--this time last year there were only two oral drugs, now there are four. Plus, (lucky me) failure of my drug qualifies me for a trial study of an aggressive chemo drug. 

Last year at witch camp, I learned that I wanted to chose life. I gave myself permission to want the things I wanted and step into the center of the life I am building. And live there. Embodied and unafraid to fully experience life even if it hurts myself and others. This year, I see ways that full living has happened and ways that it has not.

This year, my camp focus was on grief work. I was excited to bring all the fruits of my grief labor over the past year to offer others. (It is humbling to even write this down!) I was excited to connect with others through their grief. It didn't work that way. Instead, I tapped into a grief that was deeper than any I have experienced this past year. Cancer has made me feel like an outsider in many ways with people. I hate the identities of cancer and terminal illness and I can't shake them. It is painful.

I came through the hard grief and left camp knowing that my learning is deepening through my life with cancer. I still want to have that embodied living. I still want to build a life and live it. And, I am called to the difficult work of accepting cancer as it is right now. Right now, it is growing. (Fuck, that is hard work.) Don't get me wrong--I am not throwing in the towel. I am still ready to stick around a long, long time.

I don't want to say I choose cancer, because I don't. I want to say, "I choose life and accept the grief that comes with it." For me, today, cancer is my grief. But it won't stop me from making plans to go dancing this weekend. <3