Sometimes life doesn’t make sense, and it feels like it's taking us for a ride.
 
Yesterday I hiked 2000 feet up Manitou Springs Incline to almost 9000 feet, and ran down. Twice. A personal triumph of my recovery.
 
Tomorrow I go in for a bone marrow biopsy.

 
How can things be so rapidly, intensely, good and bad; how can I possibly take it all in and not be thrown off the ride?
 
My life feels like a roller coaster of extremes. So many ups and downs it’s nauseating trying to make sense of.  How can our best days and worst days be so inextricably connected? How can we possibly feel so much? When our lives don’t make sense, and our capacity is stretched so far, it can be dizzying, crazy-making, and human.
 
To be honest, some days I want to just get off of the ride. I want to exit the roller coaster car to the right, and go get some funnel cake. Sticky, powdered-sugar fingers. Sweetness. Slow enjoyment of the moment. A deep breath, a sigh, the slow mundane every day… But wait: Times up, fasten seatbelt, lower the bar for a false sense of safety.
 
Feeling like I’m in control on the roller coaster is a false thing… yet I want it. I fantasize about it. For example, I think about things such as if life made sense then if a good thing happened to me, it’s because I’m a good person. And if I keep being “good,” then only good things will happen. Translation: Do good deeds in the world for myself and others, and, the voice in my head says, I’d have fewer biopsies, and spend more time eating funnel cake… but that doesn’t seem to be the case.
 
The ups and downs don't make sense, or add up. And in addition, I don’t see that roller coaster being replaced by spinning tea cups anytime soon. And, truthfully, I’m pretty glad about that. My life has been intense as far back as I can remember. I learn and grow from the tightly woven ups and downs. I can handle it, and I would never trade tea cups for coasters… so how do I ride the coaster, be in the intensity, breath in the confusing moments, and know when to raise my hands up and let go?
 
On this seemingly out of control free fall of the coaster, suspended upside down with this tiny little seatbelt digging into my hip bone, can I accept it and ride it through? Can I be aware I’m going for a ride, and remember that I have the skills, foundation, and support necessary to come through the other side?
 
Sometimes we can’t get off the roller coaster. We can’t slow down the momentum and intensity of life. But we can recognize and accept that we're in intense times,, breathe with this moment to reveal it for the rickety coaster it is, and fully feel the ups and the downs.   

We can't have highs without lows, and sometimes they happen almost at the same time. What's one high and one low of your past week? Take a breath, and remember the experience of both of those moments. Now bring them together and notice if they can be in relationship. For a moment, just feel, the joy and the ickiness. There's room for it all, and it's all part of the human experience. 

So dating.  As if dating weren’t a tough enough situation for most people, bringing up all kinds of internal “stuff,” now we throw illness into the picture.  Sometimes I imagine "Sex in the City" or "Friends," but give each character a chronic, life-altering, or terminal illness on top of it- can you picture it? (Oddly enough, they haven’t made that tv show yet!)

First date:

• Hi, nice to meet you, I have a chronic liver disease, what’s your name again? (Hmmm, I think that went well.)

 
How do I even approach the subject of my illness?  Awkward. That's one thing I assume, is that it’s going to be awkward..  The story in my head, based on zero facts, is that I’m going to tell this person about my illness and they’re going to:
     ·      Scream and run away
     ·      Start crying because they feel so bad
     ·      Spontaneously combust
Of course, all of these options are not dramatic at all, and seem totally possible. Particularly number 3.  Regardless, the conclusion of the story is that I’ll be left to pick up the pieces, and the check. 
 
What if I wait to tell them,? Ya, that could be a good idea. But that brings up the question: when do I wait until? I look fine on the outside, maybe they’ll never know.  Maybe I won’t have to tell them because it’ll just be a short term thing.  Maybe I can just pretend that I’m normal.  You know, go on a few dates, have great sex, everything ends before I have to say anything.  Oh wait, back to the present moment where we’re out having our first date dinner. I can’t drink because of my liver.  I know how this goes, I’m not going to have a drink (no matter how amazing this one date is it’s not worth a one way trip to the hospital so I can live out a fantasy that I’m normal for one dinner!). Which means that they’re going to say:

• You don’t want a drink, come-on, it’s on me, have a glass of wine. 
• I can’t, really.
• Huh. (I’m watching wheels spinning in their head coming to one of two conclusions. She's either:

      ·      In recovery. She’s an alcoholic.
      ·      Pregnant.  I’m on a date with a pregnant woman.)

• Ya. (and I’m thinking, here it comes, brace for impact, are they ask why I don't drink? Awkward. Awkward, awkward, so f-ing awkward!)

 
And with all this swirling in my head I’m definitely not present in the moment.  I forget the fact, and perspective, that lots of people have parts of themselves that they feel like they’re hiding.  That they’re wondering whether or not, or when, to share with someone new in their lives.  In fact I have lots of other things that I have like that too. 

We want to be authentic, but it’s so vulnerable.  
 
The facts in my experience are: I tell people, as soon as I can, and I notice what a challenge that is for me.  At the same time I pay attention to the person’s reaction.  It’s true, they may not be able to handle it, and then I’m so relieved to know that. Because I need to be seen for all of who I am, and this is a big part of me.  So they need to be able to tolerate the discomfort in their own system, and still want to get to know me, and hopefully grow with me. And that’s information I need to know at the beginning so that I can fully show up and not minimize myself or my experience.  Nothing is worth me dimming who I am and living with knowing that I’m only being a fraction of myself.
 
Also, in realty, most people I’ve told have surprised me by their reaction.  They’ve understood in the best way they know how, and they’ve usually related to an ex, a family member, or maybe even their own experience with their own illness (so my being vulnerable lets someone else be vulnerable too, and we realize how similar and human we actually are).  It’s been okay.  Big sigh of relief.
 
So, here’s the point: be brave. This is part of who we are, and part of how we get to do relationship. We get to be 100% real, true, us in our relationships: real-ationships. Claim it no matter how uncomfortable and awkward it may seem, and then gather some information about whether this is a genuine connection or not. Scary, but hopefully doable.  Trust me, it gets easier over time. 
 
We’re not broken, we’re human. And we deserve to be in relationship.
 
What do you think, does this feel true for you?  

​I look at my Facebook thread and read: David Bowie - Trending.  Sinking in my stomach, heaviness in my chest cavity.  David Bowie passed away at 69, from cancer. 
 
It’s interesting what happens when we are confronted by the tangibility of our own mortality. I exhale…inhale. And in this moment am flooded with the relief that the inhale is still there.
 
I scan down my Facebook Home feed and notice that Elizabeth Gilbert, wrote some beautiful words regarding Bowie's most recent album, and video, which he was working on during his final days.  She writes, “Can you imagine, to be making art like this (fearless art that both comforts and challenges) right up to the moment of your death? How do you do that? How do you BE that? To work with your death so imaginatively, in order to perfectly time out the last beats of your life? … I am overwhelmed by awe. This is what it means to be a great artist.” In the background I hear him singing, “I’ve got scars that can’t be seen.”  My breath gets caught in my throat. My abdomen gives a bottomless throb. 
 
And I wonder to myself, what might it be like to reframe what it is to be an “artist” and make “art.”  I know this could be a controversial subject for many artists – I can relate to this with all the discernment of having been a professional performer.  Yet one thing I know to be true, my illness flipped my idea of being an artist upside down.  When confronted with my own impermanence I realized the potential of every moment being art, if we choose it to be, in it’s horror, dignity, and beauty.  As far as art goes, what if everything counted? What if there was no moment to small to be “art?”
 
Memories waft in, and I suddenly re-experience many versions of “art” for myself, such as walking to the mailbox, spending a day without having heart palpitations from the anxiety of being in the unknown, taking a medium sized breath without pain...  And riding a bike again for the first time, well, for me that equaled a masterpiece!
 
So what if we live like our life is already art?  What if we’re all artists, and these precious breathing moments are our palate of colors?  What if we could be in awe of our own lives as art? What if we continued to say yes to experiencing the full spectrum of the joy and the brutality of our illness experience, not wanting to minimize any part of it. If all who live will die, and if our life can be lived as “art,” then really we’re all dying for our art?  Perhaps, like David Bowie, we can spend these remaining moments making an album of our life.  A smile creeps across my face and the thought, that today I can choose to be aware of being artful… full of art.
 
In my room by myself I lift up my cup of tea to David Bowie and to myself. Both human artists. Both made of stardust. One transcendent of this reality making art in another realm, and one for left here to make art in this moment. 

Does this feel true for you? Like/comment below ~

I reach into my purse and pull out a piece of paper. It’s a remnant from my doctor’s appointment yesterday, my most recent check-up.  White, crisp, data. Simple numbers distributed on a page in an orderly fashion.  It is so clear to me that these numbers and letters don’t possess feelings. My name is at the top, my birthdate, my age: 34 years. 34 years. I feel like I’ve lived several lifetimes in these years. In the last five alone. It’s dizzying. I notice sorrow creep into my belly. I sigh.
 
It’s just a piece of inked paper, but for me it is a constellation of cycles of diagnosis and recovery. What’s in a diagnosis? How is a diagnosis acted upon by time? Five years of time.
 
It’s about to be solstice. The day with the least amount of sunlight, and most darkness. I’ve allowed in both the darkness and the light, because it’s all true.  To try to deny any part would be futile. I believe it’s all part of me, stardust, the Universe, trying to experience itself in this unique embodied form, in this lifetime, in this human body.  This seemingly broken body that I’ve painstakingly put back together again, one tear and laugh at a time.  The white paper says: today’s clinical visit summary.
 
It’s about to be the new year. New Year. As if things change in a day… I guess sometimes they do. On New Years five years ago I was flying to India, intuitively knowing I had to go to shift my life.  I was seeking and finding no answers here. So what do privileged people from Boulder do when that happens? Go to India. Go somewhere else to find yourself, to find the part of yourself you already know to be true, but you’re terrified about accepting, so you give yourself a glamorous and culturally-appropriated intervention.  Thus, I went to India, because I had an intuitive hit from my future self that I needed help to shift.  And I sat in temples and meditated and frivolously stated that I was open to whatever help I would receive.  “I’m open.” Just help.  Guess I should have been more specific.  I started feeling ill two weeks later on the flight home. The white paper says: trip to India is seemingly unrelated.
 
Now, it’s about to be my birthday. 35. I’m a crone. I’m not trying to be funny here, archetypically I feel like a crone. Metaphorically, I’ve spent the last five years contracted in Winter, and am just now crawling out to feel the rays of sunshine pierce my inner seed. I’ve been under a blanket of snow while my purpose has been working on me.  On the outside it looks like I’ve been sparkling, like I’m the model patient, like I’ve triumphed over incredible illness.  True.  In my past life as an actress I painted on the face, as a patient I added the smile.  Underneath the surface I went from professional seeker of the silver lining to professional griever.  I’ve grieved, and grieved, and grieved. I’ve lost, and let go: of my past that I didn’t want, of my past that I didn’t get, of my future that can’t be my future anymore, of my future that will be but I’m scared to own. The white paper says: next check-up in 3 months.
 
So on this upcoming birthday, as with every birthday, I will have gratitude to be taking another breath, because it is precious.  And I will have fear, as with every birthday, of what I will become in this year. Both the potential for another shattering, and the potential for stepping more fully into my expansion. I feel exhausted by the freedom of choice and responsibility that comes with being authentically human.  And my specific version of human- to burn brightly but not burn out.  More accurately, to not burn out again.  So what will I become this year as I continue to step into my purpose?  
 
Let’s not forget this piece of paper with scattered data in my hand.  This paper tells the tale. Of diagnosis, of feeling fragmented, of it not being fair, of slow improvement yet continual destruction over time.  It says Autoimmune Hepatitis, Pancytopenia, enlarged spleen.  It says to: continue Prograf.  I feel my doctor’s thoughts pour through the page as he typed the numbers: “you haven’t let your liver disease define you. That’s as rare as your disorder.” The prescription he stapled to the back for a new blood test to see the level of my liver damage. The word “cirrhosis” bleeds from the page and takes flight in the air, and my liver increases its weight in my abdomen. 
 
In the unspoken white of this paper are five years of heartache, pain, not being seen, acceptance, grasping, identity, new identity, discovery, joy.  Of who am I? But I don’t want to be that: sick.  But I don’t know how to be that: healthy.  And who am I now?  Of solstices, and New Years, and birthdays.  Of that which dies away and creates new space.  Of slowing down, feeling the anxious beating of my heart in my chest at night, because I don’t have time to waste, I could die at any moment. And then there’s another breath. Follow it.
 
I wonder, how does the seed know about gravity, of how to find the sun, of which way is up?  Where to put down roots and where to grow?  Where to hold true and where to expand? 
 
And I wonder, how do I write about this experience, own my experience, and continue to live my experience in a way that can inspire others who are in their own crisis?
 
I don’t know.  I guess I just continue to be.
 
So I neatly fold the prescription and the piece of paper, and place it delicately in my purse, with reverence, because it holds the last five years of my history. And I find my hand on my heart sensing for my next breath.  My cells, my family, my liver, my relationships, the earth beneath my feet, the stars over my head, the seed of my purpose, it all holds my history.   

Does this feel true for you? Like/comment below ~