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. 

Introducing Myself

I was invited to introduce myself.  I don’t want my introduction to be about cancer. I don’t want to use the word cancer ten times in this blog post, but I probably will. 

I have stage 4 terminal lung cancer.  Today, I am on oral chemotherapy and I’m doing really well.  Statistics say I have a 1% chance to live five years.  Thanks to a mutation, I have a good chance of being in that 1%.  But of course, numbers are irrelevant—either I live or die and there are no guarantees. 

This blog was not set up to be about cancer.  Several years ago, after being inspired by Brene Brown, I started this blog to “tell the truth” about my life.  Looking back, my plan was to have an awesome life.  (With a few ups and downs of course, but I trusted that it was not going to have to play out like a crappy reality TV show.)  Now this.  My blog has been hijacked.  My whole life has been hijacked. 

Last night I had a showing of some paintings made since my diagnosis.  Just before it was my turn to speak (about my cancer of course), I thought, “I really don’t want this to be my story.”  I really don’t.  I want to have a cooler introduction.

When I was about six years old, I wore a gold “ERA” necklace.  It was the early seventies and the equal rights amendment was on the table.  I felt proud of being young and passionate about something.  That has been my life ever since.  Anyone who has known me in the many circles I have been part of, will tell you I am passionate, and justice has always been just under my skin and on the tip of my tongue.  Love and justice have always been the themes of my life. 

Here’s the introduction and life story that I worked my whole life to build: I’m Colleen.  I’m a kick-ass revolutionary who is working to rip apart the lies that feed injustice and showing up to build a better world.  (Of course, I’d like to include the vulnerable truth that I make a lot of mistakes along the way, because, you know, Brene Brown.)

Okay, that story is really shooting for the stars. If I can’t be that cool, I would like to tell a story of the quirky mundane life of a queer pagan parent.  Yeah, that is what I was thinking when I started this blog. 

Today when I was driving to Trader Joes (cheapest organic milk in town), I caught myself appreciating the feel of the sun on my face in a way that reminded me how much I love this life.  There is a certain way facing mortality changes everything.  The drive to Trader Joes.  The sun on your face.  I remembered I was dying.  I looked at my fingernail beds and noticed the shape of them and wondered if anyone else would hold the shape of my fingernail beds in their memory so that they might live on, or would they die with me?  That is what going to the grocery store can be like for me now. 

You asked me to introduce myself and I can’t make my story not be about cancer.  I can’t make my story not be about death.

Here it is.  I am Colleen—and I believe in love and justice.  I have a big huge heart that loves so many, but can’t save a single one from the wrath of pain that my death might cause.  If I told you a story about how happy and fulfilled I am living my life today, it would be true.  Yet, it would be empty of the truth. 

I hate cancer.  I hate that my life is about cancer.  I hate that the only way for me to properly and fully introduce myself is to tell you a story that I wish wasn’t mine. 

Becoming a fighter

Living in the middle of the story of my life, I can’t always see how my small acts add to the big picture.  As much as my intention has been to do this cancer living in the most honest (and positive, when possible) way, it takes looking back to see patterns. Here are some of the clues to my story.  Since my diagnosis, the things I wanted for myself have been: a comfortable chair, nice slippers, the best sweatpants and sweatshirt on the planet, good pillows, and a TV in my bedroom (!? I have never wanted a TV in my bedroom—that should have been my first clue.)

I have noticed that my passionate fight for justice in this world has shifted.  The first pang of immortality for me was realizing that our world would not be fixed in this lifetime.  It is painful to know that there may be little to nothing more that I can do.  What if my biggest legacy is the heartbreak I leave in my daughter and other beloveds?  My spirit of excitement for the work I had been doing in the months before diagnosis was all but put out.

I haven’t wanted to say it out loud because I have such a huge team of fans cheering for me; but here it is: since my diagnosis, I have not felt like a “fighter.”  Don’t get me wrong, I have been, and continue to be, willing to do whatever I can, whatever it takes to be here.  The spirit of doing what it takes does not feel like fighting.  Part of me thinks that this is rooted in my long history of spiritual practice; part of me has no idea why I have not been driven to fight. 

I look back at the past two months since my diagnosis and what I see is that (without even knowing it), I have been making peace with my life becoming all about cancer.  I was getting myself as comfortable as possible for the impending pain and sickness of it all.  I was settling in to life as I expected it to be.  I was ready to accept that my work here was coming to a close and it was time for me to make the most of that reality.  All the while, thinking I was doing my best to live in the moment and stay present. 

A month ago I was offered a (possible) different outcome.  I switched from monthly chemo treatments that were scheduled for the duration of my life (with a 50% chance that that would be less than two years), to an oral pill that promises fewer side effects and for many (but not all), an extended life expectancy.  The day after the news, I was filled with anxiety.  Could I choose life?  Was it going to be safe for me to fall back into the folds of mundania—school, work, dreaming of a future for me in this world?

I have been facing that question for the past month with no clear answer.  I have not known how to make the shift out of my television chair into the world of the living.  I want to give myself some credit because these words make me sound like I have not been living, and honestly, I have been doing a pretty damn good job of staying happy, healthy, and active thanks to my friends and family.  What I am talking about has been very subconscious and subtle. 

This past weekend I went to a spiritual retreat and was invited to name my desires.  Every single one of my desires was about the world or my family.  It was clear that I gave up on desire for myself.  Lack of desire makes it hard to know how to make a life in this world.  I did not know how to shift. 

The next day we worked with the concept of surrender—surrendering to our fear, anger, grief, and apathy—so that transformation toward desire can happen.  Profound.  Seriously.  Let me just say, it was the most I have cried in years.  I cried for me, for you, for everyone and everything.  All of this big beautiful fucked up world.  I let myself not be the momma hen of managing my cancer—not be the chaplain of everyone else’s feelings.  I broke down.  Felt it all. 

Like magic, what opened for me was possibility.  I could have never known that playing momma hen and being “okay” all of the time was exactly the thing that was preventing me from stepping into life.  It is in that place where letting vulnerability; letting fear and grief happen that I can know I can survive not getting the world I so deeply desire.  And I can still want it anyway.  I can have desire for me.  Maybe I can even fight for it. 

Suddenly, I felt strong and brave enough to want for myself.  To let my own desires continue to be fed here and now. 

I am glad I have the pillows.  The sweatshirt.  The chair.  Not yet so sure about the TV—although it has meant more cuddling time with my kids.  But I want more.  I want to fight.  Not against my cancer—but for my life.