Hell Together

He held my face in his palms.  He does that when having my attention is of utmost importance.  He learned about eye contact in school.  Most of us just get it--when you want to show someone that you are paying attention, you make eye contact. But my son was not prewired like that, Finn had a specialist who taught us all to say, “find my eyes.”  He practiced so often, that he learned—finding eyes is what you do when something is important. 

He held my face. He found my eyes. He asked me, “Your cancer is not going to make you die, right?”

The gap between hearing his question and knowing how to respond was as deep and wide as the Grand Canyon.   In a mere second, a rush of thoughts flooded me.  I have stage IV lung cancer—the number one killer of all cancers.  I know anything is possible.  I also know this is a crappy diagnosis.  This is an important moment.  I know what I say next matters.  This feels like hell. 

I thought I was sick all day today.  To be honest, I’ve been sick a lot lately.

I started coughing last week.  Not very much, but when I do, it is a cough like I am a smoker.

My hip hurts again.  I get out of breath easily. 

I tell myself that this could all be because I am more active.  I tell myself that this could be an emotional manifestation of fear because it is the week of my bi-annual brain scan and quarterly chest scan.  No matter what I tell myself, I also know, I might be dying of cancer. 

At the same time, something profound is happening to me.  I am living.  Feeling love.  Saying yes.  Showing up.  Making art.  The joy of repeatedly having the freedom to say “fuck it,” and, “Yes!” I am blessed with living so actively present in the moment that I spend very little time pondering the future. 

I want to believe beating cancer and miracles are possible.  I just don’t want to be a fool full of false hope.   I want to answer honestly, but this is so complicated. 

There are many paths out of hell.  If you aren’t careful, most of the lead you right back.  The problem is, there is no way to know what is the best way to go when hurt, deception, and false hope, are the only choices you can think of.  I’m not sure if this is right, but I choose hurt.

“Some day I will probably die from cancer.” 

When Finn gets sad, his eyes fill with tears before finally falling.  After they came, he sobbed and sobbed.  I held him and gave this shitty information time to be felt.  I tried to comfort him.  I told him that I might live until he is a grown up.  I told him that some people believe in miracles.  I was back peddling. He was so solid and so broken at the same time.  He said, “Have you been keeping this secret from me all this time?” That hit me.

Maybe playing everyday and having fun and only sometimes stopping for homework—is just what you say it is—secret keeping.  Finn, you deserve as much or more than anyone to be going through this with me.  Instead, I tell you a little and let you watch Tom and Jerry (far more often than you should).

Honestly, I can’t remember what he has been told exactly.  I know that we have been committed to telling him the “truth”—but the only thing I know about the truth is that it doesn’t really exist in our human construct.  We are all telling stories that hold nuggets of truth to map together our mythology. 

What I have learned about cancer (much like life) is that we all have to build a story—a mythology for survival.  Cancer has shown me that my mythology is different and does not work for many others on this same path.  I am engaged with the prospect of death.  I am here with my beloveds as they sob over the possibility even though it might not be true.  This might not be the easiest path out of hell. 

The next morning, Finn sat as close to me as his body could allow and said, “I want to sit close, because some day you might die.” In this solid, broken moment I feel grateful to put my arms around this precious soul.  I am sorry to cause this hurt, but I am glad to be here in hell with him. 

Learning from the desert

I went to Zion and the Grand Canyon with a mission. The desert feels like a good place to face the facts of life.  Learn about survival.  I was going to a land that was unknown to me to learn what it had to teach.  I guess it is something a terminal illness calls one to do. 

I had recently finished a class at the meditation center on “befriending death.”  At the end of the class, we tied red string on our wrist to carry what we had learned forward.  On the day I put the red string on, I tied a knot in the string.  The knot was a reminder to me that my own story, my own truth, was what I had to learn and to teach from.  Just before my trip, after wearing the string for a couple weeks, I felt done with it.  I knew that I would find a time and place on my trip to release the bracelet.  I believed that something that the desert had to teach would give way to letting go of what this bracelet held. 

As soon as I got out in nature, I started to take in the earth and learn the metaphors I felt with my senses.  While hiking in the Virgin River between two canyon walls, I spoke out loud, “Rocks are allies.” A few minutes later, “Rocks that look like allies can be unstable and slippery.”  I learned that deeper water is easier to move in.  While everyone else avoided the deep spots, my travel companion and I headed right for them.  Water is a refuge and gives relief.  Yet the power of this water, this same river I was walking in, cut through the stone and made these canyon walls. 

I learned from the canyons.  The dry water-thirsty life finds the only place possible to plant roots and figures out how to survive, despite all odds against it.  It’s not just one tree, one bush, one plant.  Life is sparse in the desert, but it is everywhere.  There is much living happening in the land of impossible.  I saw the layers of earth that form the canyons and was mesmerized by the millions of years that they each represented—I was reminded, we have been figuring out how to live when the odds are against us for a long, long, time. 

I learned that a tiny flower is just as breathtaking to me as a massive cliff.  I learned that a big chunk of quality time with a beloved adds up to more than the same number of hours in small spurts.  My travel companion was also my teacher.  I told her how I wanted to live as fully present to my body as possible.  At one point during a particularly challenging hike, she pointed out, “If this isn’t being fully present in your body, I don’t know what is!”

One night, I couldn’t sleep.  I stayed up thinking about my son and how his life might change if I am not in it.  It was a painful sleepless night.  A few days later I lost my shit trying to negotiate with my son’s other parent about something so simple as how often to bathe him.  It felt essential.  A place I had to make my mark.  Almost like a last chance to have voice in this precious life that I was helping to foster and grow.  It hurt to care so much.  It hurt more to let go and give in. 

The canyons and water taught me about living.  I learned lessons about being on earth.  It was the battle over the bathtub that taught me about how death is impacting my life.  Despite my grief over the potential of not being present to parent my son, I don’t want to be so attached to my story that I fight for it.  I don’t want to fight. 

I got off the phone with Finn’s mom and I started to cry.  Really cry.  I was crying for the grief and fear.  I was crying for the way that it came out sideways. I was crying for my attachment to the story—a story that does not have to be true.  It was then that I knew that it was time to let go of the red string on my hand.  Often the rituals that I create are far more glamorous and picture perfect in my mind than the way they play out.  I sat at the end of my bed, crying.  No beautiful nature for this one.  I tried to pull the string and break it off my hand.  Because it was wrapped around several times, it just dug into my skin and did not break.  The metaphors started to come.  Attachment to your story is what causes you pain.  Your life is not going away, even if you die.  You are etched in people.  Your story cannot be broken or taken away.  It is time to let this go. 

Carefully, I slipped my hand out of the string preserving the circle.  With it, I took a step toward letting go of attachment.  Separating my body from my story.  I’m not going to lie, it was not a good feeling.  It was sad, lonely, and painful. I don’t want to let go. I don’t want to lose my string. 

That day was rainy.  I cried while we drove across the desert back to Vegas.  I have not had the emotion of sadness (except in very small spurts) since my diagnosis.  What I have to learn from those tears is still simmering.  I believe that drive in the desert will play into many future realizations, but for now, I will let those marinate. 

This trip taught me a lot.  I am going to remember the flowers and the single trees living in spite of everything.  I see beauty in smallness.  I am going to stay open to allies and wary of slippery rocks.  I am going to continue to say yes to opportunities of being fully present in my body.  I am going to continue to do the painful work of culling attachment and separating my body from my story.  I am going to learn from my grief.  And for now, the string will be a reminder of the work I am doing.  Holding my story, learning, teaching, and letting go.  This is the work of living and dying.