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?  

There will be tough times. Sigh. There will be tough times for all of us, and some of us are more sober about that fact, based on our past experiences, than others.
 
Tough times come in many categories: challenge, growth, fear, overwhelm, striving, burning, new, transition, change, pain, joy (yup that can be just as hard) or those tough times that are downright shitty in all areas. We know this to be true. It will be hard, we will transform, and so will those around us.
 
Yesterday I was mountain biking up a hill. It was tough, and of course it was both a literal hill, and a metaphor for those tough times in life. It got me thinking about something simple I do, that works for me, in those tough times to get through. My mantra.
 
The word mantra works for me. The literal Sanskrit (ancient language) translation is “to think, to think a thought behind speech or action.” This is something else I’m curious about a lot, how our thoughts lead to action, movement, behavior. Good old Webster says “a word or phrase that is repeated often or that expresses someone’s basic beliefs.” Again, I’m curious about how we live our beliefs and values in the world. So mantra, something I repeat to myself, to support me in action, so I can live in the integrity of my beliefs.
 
There are lots of mantras or words/phrases out there to try on (Thomas: I think I can, Dori: Just keep swimming), but I think it is the most potent if we create our own. Something short, memorable, potent, and emotionally charged, which will light a fire under our ass during those tough moments, and remind us that we will make it through. Taking a breath, letting it out. Feeling the intensity in my gut.
 
I’ll share mine as an example. My mantra is #jazzhands.  It’s an unlikely mantra, but to me it is a potent seed of transformation. This is a mantra that already existed within me, came out of my experience, and creates that feeling between laughing/crying where I feel the hope and tragedy of my life intermingled. And, most importantly, it immediately snaps me out of whatever messy thought pattern I’m in, brings me back to the present, and reminds me, oh right, yes I can!
 
Jazzhands is about my prior career, the career that I left because of my illness, the grief and loss associated with my illness, the metamorphosis and change process and growth as a result of hitting bottom, having a sense of humor, and being present on stage… the stage of life. Not wasting a moment. Being curious and joyful about living in this body, in this lifetime, even when it feels like suffering and pain. And that everything I’ve gone through has lead me to this present moment where I get to show up completely and say yes to my life. #Jazzhands.
 
So what’s yours?
 
Try some on. Keep it simple, memorable, and potent. And then hold yourself accountable. I wrote it on my mirror. I wrote it on my website. I say it out loud in groups and get other people literally doing jazzhands (choreography!). Fully mind, body, spirit people! So get in there and do some internal questing to uncover your personal mantra. Remember, there’s nothing too silly, odd, or weird, and the only person it has to make sense to is you! You don’t have to justify it, you just get to live it.
 
And then start practicing, because if you want something to be there in the tough times, you’ve got to practice it in the other times. So when you’re biking up the “hill” you can shout out loud #jazzhands, make yourself laugh, scare some prairie dogs, and keep peddling. 
 
Post your mantra below or on Facebook, to get some accountability and claim it, and have fun with it! 

This past week I had the great fortune to go to Las Vegas and witness the ending of an era as the show Jubilee, which has run in Las Vegas for the past 35 years, had it’s final show. I was a performer in Jubilee for almost 2 years.  
 
My identity as a performer, dancer, and showgirl is something I have grieved repeatedly since I became sick. Unable to walk up a flight of stairs, I remembered walking up and down thousands of stairs a night, with 4 inch heels and a headdress on in Jubilee.  I cried and cried in my bed, night after night, feeling like I didn’t even know who I was without performing. It’s all I ever wanted to do. It was my identity. And now what? Goodbye rhinestones.
 
I slowly began to realize that there were other things that I could do, such as become a Dance/Movement Therapist, which incorporated many of my interests. I began graduate school, but still felt a hole… the nagging feeling that it wasn’t the same as performing. There is always that comparison. 25 years in my performer identity, and only a couple years in grad school not yet fully owning a therapist identity didn’t outweigh each other yet.
 
And then an odd thing happened. I began to feel better, and stronger, and, wait … maybe I could perform again? I think that time was maybe even worse, in that it was so confusing. Like a carrot being dangled in front of my nose, while I was already moving down another path. So I thought, maybe I could go back to Vegas one day, and be a showgirl again, because now I was feeling better. The previous identity was rearing it’s head again.
 
And then I got sick again. Damnit! There is no way that I could rely on my body to dance through 12 shows a week again consistently for years. So, I began to grieve again. Goodbye rhinestones, and feathers, and lashes.
 
Was I at the mercy of my identities? Where did I get to take the responsibility to choose… but what do I choose? It seemed like there were only two options:
1.  Don’t give up- be the person that goes back to their prior identity, doesn’t let things get them down, fights for it, and becomes greater at it than ever before. Plus has a physical illness… impressive! Or:
2. Brave new world- become the person who grieves, lets go, and chooses the new scarier unknown path, and shines brighter than she could have ever in her prior identity. And, PS, she did this all after an illness… also impressive!
 
Either or, either or, either or.
 
Then I got quiet enough to get out of my own way, and see what was already happening. The truth is, performing/old identity is known, this new career is not. Do I want to spend my life doing what I already do, or growing to what is unexplored and create that? And most of all, how can these maybe, actually, work together. News flash: de-compartmentalize!  These are both threads (and contain many other threads) to who I am… how do I integrate them? Is there space for the past to become present again, in a whole new way? Can rhinestones live in therapy?
 
Seeing Jubilee I felt nothing but proud, and excited, and grateful to be part of an amazing lineage. I was reminded by someone I love dearly that no matter what I am doing in life I will always be a performer, a dancer, and showgirl. So for the first time this was not an experience filled with grief. It was an experience filled with deep reverence for the part of myself that is still me. And brought up a lot of questions around how this part of me still gets to shine, sparkle, and be in the spotlight today.
 
We all have parts of ourselves and our identities that seemingly die with illness or other set-backs, and we have to try to make sense of who we are now. Now that we’re not who we once were, but we aren’t someone new yet either. Instead we’re in the very uncomfortable and messy in-between.  We may not get to choose what happened to us that made us sick, but we do get to choose how the threads of our past identities get to live in the present.  It may be a rough road of realization, but with support, creativity, and (for me) glitter, we can “figure it out.”   
 
So, does this feel true for you?

I look at the candles on my cake, flickering and imbedded in chocolate.
 
Turning 35 feels like turning 15, and, I hear, like turning 75. Some things change, some don’t. Illness makes us feel the passing of time differently, don’t you think? If time is the dialectic of past and future helping us feel the tension of the present moment, then a birthday is the dialectic of birth and death… the anticipation and palpable tension in the room as you inhale before the candle is blown out. Inhale.
 
My mom put 34+1 on my cake… a “3” candle, and a “4” candle, and then a single striped candle to make 35. It was hilarious to me in its absurdity. There was definitely a whole year, exactly five years ago, that the toxicity in my bloodstream was so high that I didn’t commit much to memory. Fuzzy. When I think back on it it’s like I’m looking through a pair of glasses that have been smudged for 3 years without being cleaned.  I remember telling my therapist at the time that I had “lost a year of my life.” She told me that “important work was being done” in that year, more than in any other year prior. I hated her for that. For trying to put a silver lining on my grief. Now I know what she said was true. That was a cocoon year. 34 + 1.
 
My wishes this year I realize are the complete opposite experience of that fuzzy year. Don’t tell anyone I told you, but I’m wishing for a continued experience of health, relationship, and awareness, at a pace that is sustainable and inspiring! And also to change the world. Wish.
 
Time lights candles, and blows them out, until there are no more. Exhale. The future continues to arrive. A future of inhales, wishes, and exhales. Of our friend/enemy time. Of +1s. And, ideally, of not missing a stinking minute.

Today is Martin Luther King Jr. Day.
 
Today I think about how people struggle, and triumph.  How one person is able to be the voice for many who are disenfranchised.  And I feel the potential power that we all have to take our lived experience, share it, make a difference, and, literally, change everything. 
 
And then I instantly feel bad. I feel guilty.  I hear the little voice, well today, of all days, you should be grateful.  You should sit down and write a message about hope, just like every other blog I received in my email today.  So suck it up and get on the bandwagon of poetic encouragement!
 
When really, today, I’m feeling a bit down.  Yup, I’m actually feeling pretty sorry for myself. Oh geez, am I actually writing this right now? What the heck does this have to do with MLK, freedom, and dreams?
 
Freedom means gaining the privilege of more choice, and the opportunity of more responsibility. 
 
Having a dream means having the ability to look beneath what is on the surface, and see the possibility and magic of the underbelly. 
 
Here’s my ugly truth about freedom: today I’m choosing to admit that I’m having a rough day.  And about dreams: today I’m having a hard time seeing them, or when I do, that they could ever be achievable. 
 
I can feel my false-self (you know, the one that stands in front looking pretty, healthy, perfect, and in control on the outside all the time) freaking out right now… you can’t write that, remember, be an inspiration, be a posterchild for living successfully with illness. 
 
And I say… how about I be a posterchild for being genuine, messy, and human? Some days are hard.  Some days you find out someone you’ve known your whole life just died.  And that a family member who has been intensively struggling with cancer may need another invasive medical procedure.  You realize you have your appointment with your hematologist/oncologist in a couple of days (never not nerve-wrecking, never sure when another bomb might potentially drop regardless of how well you’ve been feeling). The relationship you are most invested in has potentially heartbreaking complications.  And you’re fatigued, really fatigued. So that when you come to the end of your day, and first have time to do the things you love and have been looking forward to do all day, you’re so tired that you can’t even comprehend it.  Freedom, dreams… maybe tomorrow. 
 
No, maybe freedom and dreams today, right now.  These ones.  Because maybe there is room for these not-so-pretty truths to be part of our freedom and dreams too.  Maybe freedom provides us a greater spectrum of choice in how we perceive our lives… both the challenging parts and the joy-filled parts.  Maybe it’s an inspiration to others to be who you are, and how you are, without editing.  Maybe it actually all counts.  And it’s all part of our human experience.  Maybe my dream is that each of us can speak our present moment truth, and be in a the company of others that can say, thank you for being you, for being real.  And when someone else is vulnerably taking a chance to share their real truth, we can tolerate it, and say, ya, I can see how sometimes things suck, instead of just jumping in and trying to make them feel better.  
 
So for me right now, my truth is to connect with those I love, and then curl up with an episode of Downtown Abbey.  Because today was difficult.  But as my dad responded to me earlier, you’re not dead yet.  Well, I suppose that’s true too.    

​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 ~