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We all know of the Evil Queen’s agonizing lament as she summons the magic force and demands “Mirror Mirror on the Wall… Who is the Farest of them All?”   Of course, she already knows that Snow White is now the farest, and she is enraged and must confront the thing she perhaps fears most….   hmmm… perhaps we all do.   What is it?  Well, first, let me tell a few stories to set the stage.

I have become part of the “IPF Community” through various on-line blogs and support networks and am making some buddies and acquaintances along the way.    For everyone on this journey a day comes when you realize that you do not have enough oxygen in your lungs to make it up that hill, up those stairs, or even across the room.   You need oxygen.    For me, that day came last April when I realize that in order to do a walk in the woods with John and Mario, I had to stop to catch my breath every few steps if the terrain was difficult…. it was as though we were climbing Mount Everest for me.   It was tough at first to accept it, but I am generally pretty thick-skinned about what people thing of my looks (or so I thought).

And then I hear from my best IPF buddy who I will call Bob who had recently started using his oxygen tank.   He had had a family gathering and his older brother, seeing his oxygen tanks and tubes for the first time, commented (as older brothers do….) “Boy, that thing really makes you look old…”    Bob cuffed his brother on the shoulder and laugted it off.    What he felt underneath, though, was a different story.

Another day I was reading a post on on of the IPF social networks from a 60 year old woman I’ll call Nancy who had just gotten her new portable oxygen concentrator.   I was excited for her and then saw her comment “This will help me so much around the house but I just cannot bear to go out into public with these tubes….”

I felt enraged by Bob’s brother, and so sad for Nancy…. if only she could know that it if wouldn’t matter what people thought.  I had been walking around the pond near my house for some time with my Oxygen Concentrator and so wrote her an encouraging note to be brave and not be concerned about what others think.    And, a bit proud of myself for being so courageous myself.    We, me included, want to be helpful to people…. and we think that by encouraging them with things like “oh, that’s silly…. you don’t need to worry what others think…..  you have no need to be embarassed!” is helpful….  Actually, it is not helpful because it robs that person of their very human and very real and very legitimate feelings and fears — you are suggesting that somehow (if they are only a bit stronger and more confident) they should be OK….  While opposite of the intent, those words are often belittling and demeaning.

Fast forward to two weeks ago to my arrival with John to Provincetown, Massachusetts for two weeks of vacation by the sea.   For those that don’t know, Provincetown is like, well, Gay Mecca of the West.    For my European friends, Provincetown is the USA’s version of Sitges Spain in the summer.   It is where the beautiful gay men go, many of whom have invested the previous nine months in personal fitness training to be at their peak of tone and form for the summer P’Town scene.  (Many beautiful lesbians and heterosexuals and transgender people also come here… but I am just focusing here on my own little sub-culture clique.).    Well, Provincetown is many things…. it is lovely… it is artistic…. it has breathtaking Cape light…. there are wonderful people here… it is fun and free-spirited.   It is also sort of like GROUND ZERO for the slice of our culture that values youth and beauty and hotness.

Although it is beginning to lesson as everything gay has become a bit more mainstream… there remains an ugly strain of age-ism in the gay community.   Gay men fear getting old… losing our youth…. losing our appeal…. and god forbid being thought of as an “old troll” — a despicable term I remember using myself back in the 80’s to refer to 50ish men who seemed to be lurking in bars where the young (legitimate) people were..

We live in a culture where youth and beauty and vitality are highly prized and privileged.   In addition, “ability”  as in “being abled” versus being “dis-abled” is also valued and taken for granted.   The preservation of skinny and gorgeous and fit and young commands billions of marketing dollars — and somehow wards off that thing that we fear most……

Back to my stories.   We had arrived in PTown at night, and were talking in bed about the week ahead.   My routine is to walk Mario down Commercial Street (THE street), and then get some breakfast.    As I imagined our walk the next morning, I realized that I would be walking down Commercial Street with oxygen…. with a tank hanging off my shoulders connected to tubes and a plastic cannula inserted into my nostrils….    And I began to let myself really feel into… dream into…. what that would be like for me…. walking down commercial street at mid-day…. or at night….  with my oxygen.   Everyone seeing me and thinking their thoughts and having their judgments.   I, Mr. think-skinned, suddenly was aware that underneath all my bravado  was terror — I was terrified to walk out the door — terrified to face what I thought would be judgment from every direction.

The reality is that — of the many things that I am —- I am physically severely scarred….. I am disabled,  and must use oxygen…..  I am approaching 60 years old…..  this is me in all my glory…

with scars on right forearm and down my chest from bypass and with oxygen…

For about 15 minutes or so that first night in Provincetown I let myself just fully have the fear and the shame of it all — I let it bubble up and consume me — I held on to John and it came in waves and blubbery sobs.   I was terrified to walk out onto the street.   Well, my genuine empathy factor just went up a few notches.   So much for being somehow “above it.”

Just like Bob who had to hear the ignorant words of his brother…. and of Nancy who could not bear to go outside…. I needed to come face to face with what we fear most:   SHAME.

We humans are judgment machines…. it is just what we do….  our thoughts come automatically and most of the time are not stemming from any bad intention…. they are just thoughts…. we compare ourselves constantly to those around us….  The part of us that just has a well established habit of insecurity wants to ensure that we are   “AS _______ AS” (you can fill that in with words like, SMART, SKINNY, RICH, CULTURED, FUNNY, SEXY, HEALTHY, etc. etc. etc.).    Just like the Evil Queen we turn to the external world around us to vote and decide how much worth we have — we “want to be seen as….” and we can be terrified and deeply ashamed when we are not.

But, it gets worse.   For all you readers who have read ANATOMY OF PEACE or LEADERSHIP AND SELF DECEPTION, think of the BOXES that we put ourselves in BY VIEWING OTHERS AS OBSTACLES INTEAD OF HUMAN BEINGS.   The worst part is that in our shame, we cut ourselves off from others and in fact turn well-meaning others into the enemy.

Well, back to Provincetown.  After my emotional catharsis… I was able to walk down the street just fine.   As always, it is not actually CROSSING THE EDGE that is hard, is IMAGINING crossing the edge.   And, so…. (sound of deep drum… bum bum bummmmm) I went to the gym with my oxygen.    Now, the gym in Provincetown is like… well, the epicenter of all this….

At first I was actually fine.   Until….  I spotted this small group of men who were, well, stunningly muscular and fit and limber and seemed to transfixed by their wonderfulness in the closest mirror…. obviously there were some sort of ballet troupe that was performing in Provincetown.   I immediately hated them all and was sure that they were obviously self-obsessed assholes.   REally.  I made this decision very rapidly and could only glare at them from across the room….   All the while telling myself…. “OK Art, you know you are “in a box…” just recover….  you are better than this…. you are supposed to be a model of recovering from this bullshit….”   And then, just as I was about to “lift my lid” and recover…. one of the superior haughty awful men did some outrageous backbend or something and I hated them even more.

Wow.   The bitch about “consciousness” is that it does NOT mean that you are FREE of all of the very human reactive tendencies that we all have as human….   it means that you are AWARE of them!   You are still, at times, an asshole, but you are a very aware asshole.

Now, as you all know…. at our weakest most vulnerable times when we do have a goal or Quest that scares us, it helps to have an ally that will hold us accountable.   Well, unfortunately one of my closest friends and allies happens to be a Personal Fitness Trainer and Coach at the Provincetown Gym (and, by the way, graduate of Co-Active Leadership and Champion of the Provincetown Fitness Challenge…. see this website:  DENISE GAYLORD, CHAMPION. ).   So, I told Denise about my dilemma and also — here is the bad thing… if you want to stay inside your comfort zone, NEVER NEVER NEVER tell your ally what it is you actually really want….  big mistake…..  I told Denise that what I really wanted was to meet these guys, have my picture taken with them, and write about it in my blog.    BIG MISTAKE — AGAIN — NEVER TELL YOUR STAUNCHEST ALLY WHAT YOUR HEART REALLY WANTS!

Within 24 hours I received this text from Denise  “OK Big Guy… it is all set…. these are indeed the Burlesque Diamondstuds of Provincetown and they will be here at 11:30 tomorrow…. I spoke to them and the ball is now in your court…”    Oh shit.    Yes, the deepest and more real part of me just felt so supported by Denise, but the more accessible and evident part of me just wanted to send her out to sea tied to a paddle-board.

Uh.  This story gets more embarrassing before it gets better.   I DID in fact show up the next day about 10:30 or so, and I thought to myself “well, I just have to “nip this in the bud” — I will talk to these guys and have this all set before Denise even shows up….”   Good, out-of-the-box plan.     I am a LEADER, after all!   What actually happen was that my reactive in-the-box, saboteur-driven little self totally took control of the wheel.  I could not even look at them… and the more I tried to recover the worse it got.   (And, of course, remember that I am CONCIOUS of my ridiculousness which makes it so fun).   So when Denise arrived I pulled her into a downstairs closest and just ranted and raved and, yes, cried, about my ridiculousness…..  I had a little hissy fit until it passed and I suddenly knew that I could just walk right up to it and “cross the edge.”

See, at this point, the story loses all drama.   That is the thing about crossing edges…. the dramatic part with steep cliffs and fire-breathing dragons and evil monsters always happens BEFORE you decide to actually just cross your edge.  Once you decide…. really decide…. they all disappear.   Suddenly, you feel free and able.  Suddenly you remember who you are — that you are NOT your body… your are NOT your fat…. you are NOT your dis-ability…. you are NOT your age…. you are not any of things things…. you are a glorious messy brilliant HUMAN BEING with an open heart.   Knowing that, I marched into the gym area with Denise trailing behind, approached and held out my hand to Danny and French…. two of the guys…. introduced myself and told them how happy I would be to talk a picture with them.   They smiled, they were warm and friendly — they were delighted to help.   I am not sure where the two horrible people went but they had transformed into to very nice friendly men who just happened to have sizzlingly hot bodies.

Two (very nice warm-hearted approachable) guys from the cast of Diamondstuds Burlesque.

We went to their show that night with the full cast and I am not sure when I have applauded so loudly.  They are extraordinarily talented and it was an awesome show  (I urge you to see them in Ptown or anywhere… see  Diamondstuds Show ).

So, I have been learning about my vanity…. about how to be more compassionate and empathetic without belittling others…. about feeling the freedom that comes from crossing edges….. about knowing that if we are human we experience SHAME.  In the words of one of my very favorites on this topic, Brene Brown,  “Vulnerability is not about fear and grief and disappointment.  It is the birthplace of everything we are hungry for.”   (see http://Brene Brown).

And in this I have stood up for a new “Quest” — passion I feel in my heart…. about shame.   It is NOT OK with me for people to be shamed or kept in the shadows with their shame.   I am here to help people cross edges into their freedom and their power and their natural right as a human being to feel the full spectrum of feelings.  I am here to assist those who find themselves OUTSIDE…. in the MARGINS…. CUT OFF…. to step in (or roll in or slide in or craw in) to the CENTER.  This is now a pursuit beyond me because it begins with me as my own story.

So, what is happening with me?   Here is my current status:

• I have been undergoing an evaluation process at the Brigham and Women’s hospital for candidacy for a lung transplant.  It is a seriously comprehensive set of tests and I have had things inserted into body-parts that I didn’t realize could be done….  this will conclude with a hospitalization at the start of September and learning of my status a few weeks from then.
• Regardless of the outcome of the evaluation, I am not yet sure that the Transplant Trail is a road I want to travel — and I have time to think about that because at the moment I am too healthy to be on an “active” list for a transplant.
• I visited the Cleveland Clinic to see an IPF specialist, confirm my diagnosis, and see if I was missing anything.   Diagnosis confirmed, got some useful information, and am wildly impressed by “my” doctor at CC.
• My Pulmonary Function Tests have declined slightly over these months, but I am mostly stable (and grateful to be enjoying my life almost every day).
• I am on oxygen now part of the time – at the gym, walking the dog, traveling by plane.
• I am continuing to do some of my existing work, like leading the Co-Active Leadership Program, coaching workshops, and working with individual clients — and, I have finished my direct involvement with my company Coaching Hall in Bogotá Colombia and am not taking on any new work at this point.
• I have been taking Perfenidone (Esbriet) which is a new medication that can potentially slow the progression of IPF — I have been on it now for almost six months so as I have more tests I will have a better sense of whether it may be working.
• Most importantly, I have a new, IPF-inspired TATTOO which I think just might be the topic of my next blog article.

Very special thank you to Denise Gaylord, to the cast of DiamondStuds (Jett Adore, Paris Original, Trojan Original, and Devon Aire) — and… my husband John who teaches me everyday what it means to be a compassionate and loving human being.

~ by Art on August 17, 2015.

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