Just Like You

So, about living.  Turns out, it feels more complicated to me than dying does.  Turns out, I have endless possibility in front of me that I get to manifest.  I get to live, just like you.  I buckled up for the worst and over and over the universe answered, “You are going to get a miracle instead.” 

I didn’t ask for miracles.  I did not want to believe or invest in miracles.  In fact, the warrior in me knew that I, of all people, could make it through an ugly deal.  I could put on my armor, and show up to big bad monsters.  I like to think I am not afraid of monsters.  (As I write this, I know I am just as afraid as anyone, but I like to think...)  Maybe it is the adrenaline that the fear brings that feeds a certain thrill in me, but something in me gets bold and says, “Bring it on.”  I know how to fight monsters.  

When I was pregnant, I remember offering to the universe—I can handle the hardest of the hard when it comes to kids—Give it to me.  I had been a preschool teacher for almost a decade and I had learned to love working with kids with challenging behavior.  I also learned that I had a gift with hard situations.  I believed I would not be abusive to a child no matter what.  I felt a call to take on the challenging so that someone else who might not have the capacity would not end up breaking a soul.  

Then I got this precious baby.  Most of my memories of her first seven years are of watching with amazement, wonder, awe, and love every single thing she did.  It was not hard at all.  The challenges of parenting her, turned out to be about me, not about her.  Learning how to be in love with someone new.  Never adequately learning how to give her the support she needed related to her medical diagnoses.  The hardest of the hard came from inside of me.  In intimate relationships, we all break each other in little (and sometimes big) ways.  The way I broke my baby was in the places I did not (at the time) have the capacity to feed her needs—despite wanting so much for that to not be true.

Getting a baby and getting cancer may seem like very opposite gifts, but cancer is teaching me similar lessons.  Instead of a big bad monster, cancer has mostly meant living with amazement, wonder, and awe.  The challenges in living my life mostly come from me.  I have not felt pushed to the brink of my capacity—but I suspect that I will learn that my brink comes from inside myself.  When I was pregnant, I often thought that part of my role as a parent would surely be to screw up—how will I hurt this precious soul that I never want to hurt?!  And now, in my own living-with-cancer life, I wonder the same thing, how might I get in my own way and be the cause of my own brokenness?    

As much and as often as I have been saying that I am embracing life, as I write this, I realize I am still buckled in.  I am still wearing my armor.  When I wrote that I get to live life 'just like you,' it was the first time since cancer that I felt the expansiveness and freedom of that truth.  (I know, you have all been saying it since day one, but I had to learn it myself.)  Maybe my life will be just like yours.  Maybe I will live longer than you.  Only time will tell.  But I get to live life just like you and that gives me the courage to take off my armor.  Still, I feel less sure about how to step fully into living.  Can I really take this risk?  I want to let go and feel life without the tension of death.  Let’s forget that I might be dying. 

I am listening to birds chirp and feeling the wind on my arm.  I feel called by nature to get out of this self centered brain thought and go out there and live.  Just like you. 

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.