By John Gatto, Art’s husband

As Art’s disease progressed and we moved towards the end of his life, he became well-practiced at the art of surrender.  (He wrote about it in a blog that’s available on www.gratefulness.org if you haven’t seen it).  We regularly talked about this idea and the ways in which surrender was made real for him.  He surrendered to his body, its decreased capabilities but also to love and the mystery that lies beyond the end of life.  He surrendered to his increased dependence and vulnerability.  Together we grieved our losses — both individually and as a couple.  We grieved our inability to move more freely and walk our dog to some of our favorite places.  We grieved Art’s inability to complete daily tasks that provided a sense of purpose, and we grieved the loss of the life we imagined we would share into old age.

For approximately the first year of Art’s disease, his condition would remain stable for a couple months at a time.  We developed an adaptive pattern with each decline.  First we would simply observe it and acknowledge the change.  Next we’d discuss strategies for adapting to it like upgrading to larger oxygen tanks, moving more slowly, adjusting our schedule, etc.  Finally we’d implement the changes, restore some sense of normalcy then a few months later do it again.  When the speed of his decline accelerated, we realized that our old strategy would no longer work.  Increasingly we needed to surrender more quickly and not become too attached to his new level of functioning.  It was as if we had been living on a sheet of ice. Though slippery at first, we could eventually find our footing and restore our balance.  But then the sheet of ice was placed in a river and began to move downstream.  There was nothing that could ground us anymore.  We could no longer find solid footing amidst constant change.  For Art, each day brought something new to surrender.  Somehow amidst my focus on him, I lost sight of my own process and version of surrendering.

Now in the month since Art’s death I see that the sheet of ice has melted and I now find myself flailing about in the river.  I now have my own surrendering to do.  An important choice faces me:  I can either swim to shore and stand on firm ground or I can surrender to the currents that are now carrying me in new directions.

It only recently occurred to me that as Art was declining, I was treating surrender as a zero-sum game.  I now realize that I tried to compensate for all that he had to surrender.  When he surrendered to uncertainty, I tried to make things more certain and predictable.  When he surrendered to physical limitations, I tried to compensate by doing what he could not.  When he surrendered to vulnerability, I compensated by trying to create more safety.  These were all the right things to do and part of what allowed him to navigate his journey.  And now mine begins.

When I think about surrendering to the currents of the river, I don’t think of it as defeat in any way.  It isn’t a fatalistic giving up or being pulled under in a panic.  It is joining with the natural order of things and trusting that a force greater and wiser than me will guide me.  It is about not trying to control the currents or swim against them but to join with them in curiosity, openness, hope and faith.

So what exactly do I have to surrender to?

First I surrender to grief.  I feel fully what it means to go to bed alone at night and wake up the same way without the comfort and joy of Art’s presence.  I surrender to the physical and emotional manifestations of grief…the waves of nausea and dizziness that hit me…the sudden, uncontrollable sobs that happen in the supermarket, shower, car, or anywhere at any time.  And when I surrender to the currents of grief, I notice that they lead me to a place of love and gratitude.  When I let myself experience grief fully, I open myself up to the depth of love I feel for Art and the love he felt for me.  Yes, the sadness is crushing.  But it is so because the love was and is limitless.  Sometimes surrendering to love leads me to more grief and sometimes grief leads me to love but either way, the cycle almost always includes both.

Next I surrender to the forward movement and momentum of life.  The other day, amidst the bone-chilling cold of winter, there was a spring-like afternoon.  People shed their winter coats, slowed their pace and happily soaked in the unusually warm sunshine.  It suddenly hit me that we were moving towards spring.  I realized that we will no longer be in the dark winter of Art’s death.  I panicked.  I’m not ready to leave that time and place.  The fact that life moves on often feels like good news and bad news.  I’m not ready to surrender to the passing of time and the season of re-birth.  Yet when I begin to surrender to the currents of time, they carry me to a place of new possibilities.  As time passes I notice that Art’s footprint in the physical world starts to decrease.  Things in our house no longer look the same as when he was alive.  His phone doesn’t ring.  His mail has slowed down.  I realize how much I still want him to be seen in the world so I press down hard, as if applying the brakes.  But when I surrender and lighten up on the brakes, I feel a flicker of hope and begin to dream into the future a bit.  I stop counting the days since his death and start to look forward, beginning to open myself to the unfolding that is happening even in this moment.  Art and I had talked about this – where might I live after his death?  Might I find love again?  What places do I want to travel to that we had never gotten to?  None of the answers matter but the simple act of wondering about and embracing a future does.

I must surrender, too, to the mysteries of life and death.   In my head I want to make sense of it all.  Like countless philosophers, theologians and otherwise curious humans, I want to know what lies beyond.  I want to know where Art is and in what form.  Before Art died, we talked about the ways I might feel his presence after his death.  I’ve gone searching for him like a private detective, hot on the trail to find evidence that his spirit is here.  I impatiently look inside and out to catch a glimpse of him.  If my brain can just figure it out, I can rest with more certainty that Art remains with me.  And then I surrender to the mysteries of life and death and wonderful things happen. I shift my focus from my head to my heart and begin to feel awe – a marveling at the universe and the Universal spirit that Art and I believed surrounds all of us.  When I surrender to the mystery, powerful things begin to happen.  This requires some explanation:

I’ve always been fascinated by dreams.  When I worked as a therapist I studied dreams so I could explore them with my clients.  For several years I was in a group with other therapists where we would assist each other in analyzing our own dreams, searching for clues to our subconscious.  Art and I always discussed our dreams in the morning.

One night a few weeks after Art’s death, I went to bed and reluctantly talked aloud to him for the first time.  I told him that I was ready to experience his presence and my heart was now officially open to receive him.  I told him that I had been afraid of experiencing him…afraid it would overwhelm me.  I told him that I knew that if he had any say in the matter, he would make his presence known in a way that would be meaningful and comforting to me.  I trusted he wouldn’t make our chandelier rattle or the lights flicker, but rather come with his loving gentleness and bright smile.  And he did!

For the first time since his death, Art appeared in my dreams.  Before Art died we had agreed that I should take a trip following his death.  It would be a time for reflection and healing.  In my dream I arrived at the airport to take this trip.  The airport was crowded and as I walked toward the ticket counter I saw Art standing there, preparing to take a trip of his own ahead of me.  He turned to me and we made eye contact through the crowd and smiled.  Neither one of us panicked or ran towards the other.  We simply noted one another’s presence, had a deep sense of connection and then he disappeared into the crowd to catch his flight.  He was wearing my clothes, as I have worn his since his death.

When I awoke and recalled this dream, it was perfect!  Our connection was exactly what I needed.  It wasn’t too intense or overwhelming and there were so many comforting symbols in it — him travelling ahead of me, him wearing my clothing and the calm we both felt.  When I finally surrendered to the mystery of death, the dream came.  I have come to believe that there is no singular or right way for me to feel Art’s presence.  I just need to open my heart to wherever the currents are taking me.  Get out of my head and get into the river and trust.

Most importantly I must surrender to love.  The wounds of loss cut deep and sometimes love feels like salt on the wound.  Grief and loss can harden me.  I feel alone and vulnerable.  Things that never were scary suddenly frighten and overwhelm me.  There are countless decisions to make and problems to solve.  Yet, when I soften and surrender to love, color returns to my world.  I feel the generosity of family and friends who surrounded us and have stayed with me in my grief. When I surrender to love I feel alive.  I feel connected to the Divine – to the universal spirit that unites all of us and is at the core of us.  I recognize that I am not alone.  I am not the first nor last person to lose a spouse.  At a time of turmoil in our country and world, surrendering to love eases my anxiety and refreshes my perspective.  It illuminates a path forward and renews my spirit, when there are so many forces that can seemingly crush it these days.

None of these things eliminate my sadness or stop me from wanting Art back beside me.  I would give anything to have these insights AND also still have Art here with me.  But I also surrender him to the Universe – I release him and celebrate the freedom he sought from his body so that his soul, in its purest form, can soar.  I feel weak at the knees in doing so, as if I may crumble.

What I also know, though, is that our vulnerability is our strength.  Art and I made conscious choices to try to open ourselves up during his illness and death.  As frightened as we were and often as embarrassed as he was, we believed that there were lessons in all of this.  We believed – and were proven correct – that the most powerful conversations and connections happen amidst vulnerability.  We often fight the currents.  We choose to swim to more solid ground.  We try to change the shape or flow of the river.  We try to solve the mysteries with knowledge and intellect.  We extract our self-worth and sense of competence from feeling as if we have regained control of a chaotic situation.  But when we admit all we don’t know and all that seems so uncertain, we become more human and accessible to one another.  We open up in a more real way and our connections deepen.

I cannot conquer grief, the forward movement of life or the mystery of death.  I can surrender to it all.  And if, together, we could collectively surrender to the deeper wanting of the currents…to the wisdom of the forces that surround us, I believe it would transform us.  It is already doing so with me.

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(previously published at Gratefulness Website)

I walk Mario the Labradoodle along my favorite path underneath sun streaming through an evergreen canopy…it is glorious. The ground in front of me begins a gentle slope upward – so gentle that you probably wouldn’t notice it. To me, though, it is akin to a steep slope at a high altitude, and I know that if I want to avoid shortness of breath or oxygen deprivation, I must slow down my pace by half…and then by half again, and crank up the O2.

At first, and sometimes still, I get frustrated and exasperated by this betrayal of my body. Sometimes I want to just give up…sometimes I become so impatient….I find I miss the life I used to lead that involved HURRYING to get somewhere or RUSHING to get something done. Hurrying can feel exhilarating and fun.

These days, I say a mantra to myself as we begin our trek up the gradual incline, and it is this:“Slow it down by half, and half again…Enjoy it twice as much…”

More and more often, this helps me shift into acceptance of my physical reality and its limitations. I realize that this is how it is, and that moving really slowly is what I must do to get enough oxygen from my tanks into my bloodstream. I begin to slow down. With that acceptance comes a letting go, and a relaxing…and moments later, a mini-exhale and an opening of awareness. Then, “presence” happens.

In the best moments at my new very slow pace, I begin to notice the wondrous subtleties of what is around me…the soft movement of the air…the shimmering light through the trees and how it illuminates all that it touches…the creaks and groans made far above by swaying branches and trunks…the ALIVENESS that surrounds me in all directions. I sometimes pop into a sense that I AM the trees and the light and the breeze and the ground where time stands still. The hair on my arms stands up and I imagine I feel the vibration of the earth in my belly.  In these moments I feel more present and alive than I have ever known, and it fills me with intense gratitude. By moving very slowly, a whole world opens itself to me that I may well have missed before.

There is another phenomenon that awakens in me at my newfound low velocity…it is the profound impact of simple kindness.

I started thinking about kindness and what it means to be kind a few months ago. This came about because of how deeply grateful I noticed I felt in moments whenever someone took a moment to extend kindness my way. I have led an outrageously privileged life, and never before now have I known what it means to suffer. Over the past few years with Idiopathic Pulmonary Fibrosis (IPF) I have begun to experience a degree of suffering, and at times in the midst of that suffering, have been met with a simple gesture of kindness that has just rocked my world; from people I love the most, and from strangers I have never met…from big kindnesses, to the simplicity of a smile or a kind word.

I have learned that in the midst of suffering, a small dose of kindness can radically shift someone’s (or my own) experience…. and perhaps through that, transform the world.

And so, when I “Slow it down by half and half again… Enjoy it twice as much,” what occupies my awareness are the PEOPLE that I pass by…sitting on a bench or walking along. I see them in the way that we do when we pause and really intentionally look to take in and feel deeply what it is that we are encountering.  And, what I know, and also notice, is that so many people carry heavy burdens on their shoulders every day of the week. In my status quo of moving along at my normal pace, or hurrying faster, I fail to even see them.

My intent these days is to really notice, notice even more, and then act…often with just a smile and a “hello,” and sometimes with a few words of acknowledgement or encouragement. Sometimes I can see and feel that there is an impact…and often I am often uncertain if my gesture has made any sort of difference.

But either way, I know that my own heart is immediately filled with love and unbounded gratefulness. As I contemplate the ending of my life, I know that I aspire to be a conscious, kind, and compassionate person. I am painfully aware of the moments when my ego or victimhood puffs itself up and I react in ugly ways. And so, I begin again — today is always a new day, ripe for being awake, being present, and being kind.

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We sat in the exam room at Brigham and Women’s Lung Transplant Center waiting to be seen… waiting for an answer to the question “Is Art eligible for a double lung transplant that could possibly save his life.”   The clocked ticked by as we waited, already an hour past our scheduled time.

A year had passed since Art’s diagnosis with Idiopathic Pulmonary Fibrosis (IPF), a horrid disease that gradually turns healthy functioning lungs into a mass of scar tissue that cannot breathe.   Although we were unsure if a transplant was the right path for us, we were reserving a reservoir of hope that perhaps it could magically make our struggles and suffering go away and restore our “normal” life.

When the team of doctors came in and stood over us, arms crossed, and announced that he was being rejected as a candidate, the room suddenly went cold. We felt as though the “rug had been ripped out from below us,” and in that instant we were hurtled into a much more real conversation about what it means to face death.

We held on to each other. We cried. And then we asked ourselves an important question:

What would it mean if we lived out our remaining time together in such a way that, when we arrived at the end of Art’s life and death was imminent…. We could look back on our life-lived and feel PROUD of how we had lived and loved…. If we could look back on that period of time and feel predominately GRATEFUL that Art’s pending death and the knowledge that our time together was ending had called us forth into a more rich and full way of living and loving?
We knew with great clarity that if we could “Dig Deep” and answer that question… and then LIVE into the answer in a real way, it would bring us greater fulfillment and joy than could be achieved by enduring arduous measures to extend Art’s life for an uncertain period of time.

In that moment, we made a commitment to each other to accept and even embrace the reality that our life together would end much sooner than we had planned….   We committed to taking our communication to a new level of honesty with one another…. to cross the edgy thresholds into uncomfortable and scary conversations about dying, about John’s “life after Art,” about hard-to-talk about patterns in our marriage that diminished our degree of intimacy and kept us separate.   We committed also to sharing our story with others in a way that would be uplifting and would hopefully serve to enable others to both face the reality of mortality and have that awareness prompt a more full living.

We bring different perspectives and priorities to the conversations that we share, questions we ponder, and struggles we navigate.   In these sections that follow, we share our individual perspectives both on dying, and on living and loving.

On Dying:

JOHN: Witnessing the gradual decline of my husband’s health has been nothing short of heartbreaking. Every time we adjust to a change in his status, the ground shifts beneath us and we must regain our footing. And then we do it again. And yet again. It is the ultimate exercise in adaptability.

While I would trade everything I have to reclaim his health, I would not trade the deepening of the love and intimacy that has resulted from our awareness of his pending death. We have recognized that there are things we want and need as a couple as well as individuals. With gratitude, candor and humor we have explored the areas of dying, loving and living and our deepest desires for one another when it comes to all three.

Our exploration of death has allowed me to understand his end of life choices – what life saving and extending measures are acceptable, under what circumstances might he not want to live longer, and who he would like to have present in his final days and hours. We have talked about our shared desire to have him die at home if at all possible. We have assembled a team of people to help us deal with the impact of death from many angles – physically, spiritually and emotionally. As Art’s health has changed we have had to re-visit these conversations repeatedly as we see them in a new, more “real” light. It is both surreal and yet all too real.

ART: Of course there are many moments when I get scared of the dying process that is ahead of me – as much information as I gather and as many questions as I ask, it is an experience that I have not yet had and that we only have once….   And then, when I become more present and grounded, I am reminded that it is a rare blessing to know that death is coming in advance…. It provides me and us with an incredible opportunity to be conscious of how we are living and how we want for the dying process to be.

For me, unquestionably, the hardest part for me to face in these circumstances is the loss that John will have when I die…. the way in which he will lose the life we had planned together… the way in which he will “remain behind” and need to embark on a journey of rebuilding his life in a new way.   This is the conversation that I most want to avoid….   Where will he live after I am gone?   Might he fall in love and create a new family?   What if he becomes even happier in his future life than he has been with me?    I know that these are conversations that I want for us to have.   I know that if we are able to delve into imagining and dreaming about what John’s future life might be… and what we would both want for it to be…. Perhaps those conversations will make that time easier for him to face when it arrives.   In a sense, we will have both engaged together in the creation of the future that he might have.   I know that I want that…. I want for him to be able to create the most fulfilling life possible – and for the life that we have lived together to have enabled him to be even more free and happy and fulfilled in whatever life has in store for him next.

As the IPF progresses and daily life becomes more difficult, it becomes more “real” that I am dying.   I notice that when I try to resist and deny that reality…. When something inside of me goes into “fighting mode” to stay independent and competent…. To retain my ability to “do it alone”…. I suffer and struggle.   When I let myself truly exhale and surrender into John’s arms, literally, and into his loving care – I know that I can navigate the dying process in the way that I want.   Although the conversation often focuses on “What do I want” when it comes to dying…. The question that I want to be asking myself more is….. “How do I want for my dying process to impact the loved ones and family around me well into the future after I am gone?”

On Living and Loving:

JOHN: As poignant as our conversations about the end of life have been, they have brought into sharp focus another question that is even more powerful for us: how do we want to LIVE? I want to be ready for the end, whatever that means. But more so, I want to live and love with reckless abandon. Today. Now. The horizon is coming into view and we want to squeeze every drop of daylight out of it. I suppose it’s the age-old question of quality vs. quantity. What we lack in time, I want to make up for with depth and boldness of intimacy and gratitude.

I find myself wondering whether or not I have been everything I can possibly be for Art. What stone have I left unturned? As crippling as my own fears and grief can be, how can I keep my focus on HIM and be fully with him in this process – with his pain, fear, uncertainty and ecstasy? I want him to know the full impact he has had on my life – the joy he has unlocked in me, the courage he has brought forth, the way he has helped me shift my view of myself. Simply thinking about these things is no longer sufficient. It’s time to take action on them. To follow every impulse.

Like every relationship, ours has had its challenges. I have not always been able to be fully honest with Art. There are things in my life that I have been ashamed of – certain behaviors, desires, interests, thoughts, and so forth. For a long time I tried to keep them hidden from Art, preventing him from knowing me fully and compromising the level of intimacy and trust we could know. Over many years I have sought to become more honest, vulnerable and real. There’s no more time left and if I am to love him fully, I can no longer hold anything back whether it’s the good, the bad or the ugly.

Art has an adventurous, carefree spirit. I, on the other hand, am more constrained, practical and – yes – cynical. As we laid in bed the other night, Art was in considerable pain. I asked him if there was anything I could do to make him more comfortable. The twinkle appeared in his eye and he said “dance a jig for me.” Living and loving fully means jumping up to dance the jig on our bed, not only regardless of how silly it feels but because of how silly it feels.

One of the hard things about living and loving fully is that it doesn’t erase the pain and suffering. The challenge is to hold both ends of the spectrum – to hold the duality of it. We find more richness when we acknowledge the end. His pain and decline call forth more and more urgency to live. We find greater intimacy while we inch towards the end. It’s always both at the same time.

ART:   Last summer I somewhat impulsively had a tattoo emblazoned on my chest in reverse lettering so that when I look in the mirror every morning I see a giant sun bursting through the clouds with the words Make Every Breath Count.   And so every morning I look at that and I ask myself what it means on THIS day…. What will it mean TODAY to make every breath count?

What Does it Mean Today?

The bad news is that coming face-to-face with the end of my life makes me acutely and heart-breakingly aware of what I regret and what brings me deep shame.   For me, the one issue that plagues me is that I know that in moments when I become afraid or threatened… afraid of not being treated well…. afraid of being hurt by someone that I love…. afraid of being let down…. I have a well-honed self-protection mechanism that has me become, well… arrogant and critical of others…. Basically if I keep them at arm’s length and somehow establish my superiority from my ivory tower… then their arrows cannot hurt me.   The bad news about the bad news is that it pushes the people that I most love away from me and keeps me isolated in my ivory tower.

The good news is that I am super-hyper aware of this pattern, and knowing that the clock is ticking creates a burning urgency in my belly to CHOOSE SOMETHING DIFFERENT. The something different is the path of VULNERABILITY…. It is the path of opening my heart and letting others in….. of risking that I might be offended or hurt…. It is the path of being honest, knowing that I may not like the response that I get.

If there is ONE thing to which I am committed in the days that remain for me in THIS lifetime…. It is to drastically reduce the “breaths wasted” by keeping others at arms length, and to dramatically increase the “breaths fully taken” by allowing myself to love and connect and cry and have my heart cracked wide open…. by everyone…. and especially by John.

This may sound simple, but it is not. It is a pattern that I have perfected over decades.   It is what Robert Fritz calls the “path of least resistance.”   To alter that path requires a conscious act of will…. A “catching myself in the act” in the moment that I respond curtly to John, stopping him in his tracks.   In that moment I must be willing to say “Wait! Rewind! I was wrong to say that…. Actually, I am feeling a bit scared at the moment… here is what I really wanted to say…. Here is the truth….”

The good news is that I am discovering that I can do that more and more of the time.   With each passing day there are fewer and fewer “wasted breaths.”   I have the chance, in THIS life…. To love more fully than I ever thought possible… and that is something for which to be truly grateful.   The words of Dawna Markova express this desire in a beautiful way:

I will not die an unlived life.
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise.
I choose to risk my significance;
to live so that which came to me as seed
goes to the next as blossom
and that which came to me as blossom,
goes on as fruit.

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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.

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Having IPF is like being enrolled in a twisted sort of “Be Here Now” Bootcamp…  an advanced training on being present in the moment….  I will come back to that in a moment, but first some venting…

With the best of intentions well-meaning people sometimes say really, um,  stupid things to people who are navigating serious illness. Of the various things that make me just a bit crazy, one that particularly aggravates me is when someone looks knowingly into my eyes and informs me that the universe has presented me with this disease for some important cosmic reason and that there is a lesson I must learn from it — we aren’t given anything that we are not ready for, after-all….

Oh, my goodness…. If you are one of the ones that allows  words like these to fly from your mouth, please know that my impulse when I hear this is to vomit on your shoes and send you right out the door.   And, yes… I am hereby speaking for (almost) all the people on the planet who have a life-threatening illness….   It may make you feel better to adopt this stance, but know that the implication that I somehow deserve this path or have somehow created it for myself is very misguided…  for the person actually navigating the disease, it is neither uplifting nor helpful.

Ahh…. Feels good to get that off my chest.   There are others…. I shall wait for another time to share them ; ).

Although I am neither prepared to handle what life has given to me nor receptive to the idea that there is any cosmic reason for how life is unfolding…. I DO want to use ALL of my experience to grow, to make meaning, and to live life more fully every day.   The experience of having Idiopathic Pulmonary Fibrosis (IPF) is without even a close second the most challenging experience I have ever been forced to navigate…. And no matter how life unfolds I have little choice but to respond and create from the actual experience that I am having…

This past week I had the outrageous privilege of co-leading a Co-Active Leadership Retreat with my dear friends Raul, Karen, and Eva in Sitges Spain.

Connected and in love

We were guiding a group of 21 very amazing and talented individuals (known as the Ostrich Leadership Tribe) to the culmination of their 10-month journey.   One of the things that I shared with them about my current circumstances is that I feel as though I am going through some sort of Advanced Training in how to  “Be Here Now.”

A paradoxical observation I have about having IPF is that two things are both true for me:

• This is an unfair and devastating turn of events that in moments has me feel angry, remorseful, terrified and filled with despair.  It also has me in constant and increasing physical discomfort.  This is not how it is most of the time, but the truth is that this is “where I am” at certain moments during the course of every single day.
• My sense of absolute joy, love for life, and presence IN THE MOMENT is overwhelmingly huge — I am experiencing the deepest love and most luminous joy that I have ever known in my life, and my sense of gratitude is deeper than ever.  And sometimes being fully present means allowing myself to feel the depth of my sorrow – that is a part of being fully alive, too. This is also not how it is most of the time, but I AM LEARNING to spend more and more time in this place — and it is certainly where I spend a part of every single day.

This is not about being “happy” or being “sad” – nor is it about “good” or “bad.”   It is about being present and alive versus being hijacked into a state of mind that is caught in the past or the future…. Neither of which are actually real.   The other trap that stops me from truly being here now is simply falling victim to the ever-present physical discomfort that I am in…   That, too, is part of what is present – but if it completely hijacks my awareness, then  it is all that I feel… and then I am not really “here now.”

One of the tips that I shared this week with the Ostrich Leaders as we were closing our activities was a pearl of wisdom that was shared with me by my dear friend and mentor Karen Kimsey-House some years ago.   If “Leadership” is a choice…. Why should we bother to choose it? After all, it is not easy and certainly not alsways comfortable or fun….often it is risky…  And sometimes the ideal of “being of service to others” just feels too difficult or burdonsome…. Well, the fact of the matter is that when I CHOOSE to step into leadership — and I CHOOSE to “be here now” — those are the moments when I feel most alive and fulfilled and joyful.   Said in a very simple way, making that choice brings me fulfillment…. I love it and it makes me happy!

’cause it brings my joy

A big challenge around this idea of “Be Here Now” – of course – is that I get lost and I am not even aware that I am gone…. I get stuck in some remorse about my past… something that I regret I did or didn’t do, or feeling sorry that I missed some opportunity or made (or didn’t make) some choice….   “If only I had or had not something-or-other…” I say to myself.   I can get lost there for awhile.

Or, I start to imagine the future.   Having IPF, imagining a frightening future is just not a helpful strategy.  This is an ugly disease without a lot of pleasant endings, and when I begin to dwell on those possible futures it just terrifies me, truth be told.   But those imagined futures are no more real RIGHT NOW than anything else that I might imagine… they are fabricated in my head.   As my buddy Rick says, it’s all made up.

The other place I can go is simply to succumb to my physical sense of weakness and discomfort.   It is part of what is present right now and it isn’t useful to pretend it is not there…. but I know that with conscious intention I can just “be with it” and allow it to be there in the background of my experience rather than at the forefront… it does not need to take over.

I am discovering that when I am able to CATCH those momoents of being lost or gone and not present  — to become aware of them, I can then ask myself the question “Is this what I want right now?   What would it mean, right now, to RECOVER back to this present moment and be willing to be fully alive RIGHT NOW in the only moment that is actually real?

I find that it requires, sometimes, an act of will. I must will myself to come present and get my attention off myself.   In the Co-Active Leadership Program we talk about the difference it makes to have a “Stake” (like a super-purpose or commitment) that genuinely matters to me and guides me….  If I have that “stake” in the current situation, then maybe it will be strong enough and matter enough to have me put my ego aside and be present right now.    What I know is that having something MORE IMPORTANT and MORE MEANINGFUL in the center stage is essential.

In other moments, it is waking up to the people and world around me…. To let myself be touched by them…. Often is is to let in the beauty and miracle of nature that is around me… in other moments to open myself to really seeing and feeling the people that are around me – to love them and feel their love…, just as miraculous as nature!   More and more I know that the energy of love is THE most powerful force in the universe and if we pay attention we can discover that it is within and around us all the time.

And it some moments, it is allowing the pain that I feel or sorrow that I feel with others to come forward and express itself. In other moments in means summoning the courage to speak the difficult truth of what needs to be said in this moment now.  To “BE HERE NOW” fully means that my intention is not just on myself…. it must be OUT THERE, all around me.

breathing in the beauty of my garden

Now, going back to my very first statement…. If you are one of those people that thinks the Universe has a special plan and agenda or that God hands out challenges only when we are ready for them…. Please do not misunderstand what I am about to say.

Just as IPF is making it harder for me to breath every day and presenting my family with challenges we never anticipated facing…. so too it is GROWING me every day…. I think that I am learning to be more alive more fully more of the time… and am learning to be more aware of when my inner grumpy-one lashes out at others and I can recover from that faster.    I am not sugar-coating or pretending that IPF is anything but awful, but I also am very much wanting to capture the blessings.

I do believe that the path of our human development is a path of growing our capacity to BE PRESENT — and I now am having very daily and very rigorous practice in being more able to do that.   Growing this capacity is critical because 1) there is nothing more important to me that experiencing the profound blessings of this life and, 2) the path ahead is sure to become more challenging and I know that I will be more ready to meet those challenges ahead through this practice today.

For those of your following my health status, here are some updates:

• The next time you see me, I will be using oxygen.  Telling me how awesome and sexy I look with the oxygen tubes is welcome.  I don`t yet need oxygen all the time, but I do need it when I exert myself in any way (like, walking around the block), when I fly (in an airplane ; )), and at night.   It is so important to me to be able to walk with Mario…. and I can still do that as long as it is a flat trail or I have oxygen….
• I am scheduled next month in Boston for a preliminary evaluation for a lung transplant — that is a big deal and the one and only effective treatment for IPF.
• I have been on one of the two medications just approved by the FDA which in some cases have been found to slow the progression of IPF.   It comes with a basketful of side-effects (GI-related…) but I am tolerating it reasonably well.  I will know in a few months with my next round of tests whether or not it seems to be helping.
• John and I are coping with this the best we can.   He is my rock.   It is really hard for us sometimes, and it is also true that it is allowing us to discover a depth of intimacy and love together that is beyond what we have ever known… another blessing.

Thank YOU for being part of my circle.    With love,

Art

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Really? I have to “come out of the closet” again? Well, yes, I do…. fortunately I do have some practice in this area.

First I just want to say…. GRATEFUL! It is 50-degrees outside and most of the snow has now melted from my ground — I can see the tips of Spring bulbs coming up in my garden (about a month late……). Most importantly for today — Mario and I just had a WONDEREFUL walk around Fellsmere Pond near my house…. I often think of it as a meditation — a practice in striving to be really present and aware during the whole walk. This morning we just had so much fun. I notice the duck families scurrying around on the water — they made me happy and reminded me of the farm where i grew up. Today I had Mario backing up tree-trunks with his hind legs which is great practice for body-awareness and has the added advantage of making passers-by smile and laugh….. and the highlight was that FINALLY on the way back the ball-field was at last free from snow and dry enough to have a rigorous round of “Chase the Tennis Ball” — (I stand still and throw… Mario runs, chases and retrieves) — which is the MOST FUN GAME EVER.

And so, at one point I just hugged Mario and shed a few tears of sheer joy and noticed how amazingly fu#*($gly grateful I am for THIS DAY. It reminded me of the work of Brother David Steindl-Rast on gratefulness and the video…. which I have watched at least 500 times, titled A GOOD DAY. Please check it out here…..

http://www.gratefulness.org/

(just scroll down and you will find the video)…

I want to share some important information with you, my reader my friend perhaps my family member or my loved-one. I have thought long and hard about this….. should I? Why? What is my motivation here? Is this coming from and about my Ego? Who is served?   Am I looking for attention?    Sometimes I just loathe facebook and similar things, and yet it is how I am connected to you….

Well, I just don’t know the answers to these questions — what I know is that it is time to come out of this particular closet because I can feel that I am now not being fully honest and authentic…. I am hiding. I am a stand for honesty and authenticity and being real. I am a stand for allowing vulnerability as part of that… and am so very reluctantly but truly a stand for allowing others to hold me… that is most challenging of all.

I have shared my process of undergoing double-bypass surgery in January — and I have just passed the 12-week mark since that procedure… (Halle-freakin`- luya….. it has been a rough ride). So, my coronary condition is greatly improved from where it was prior to the surgery.

This (the coronary arteries) needed to be handled before I could tackle and navigate a more serious health issue that I am facing.

OK, this is the hard part. So, here are the facts and then my perspective on it.

Last October I was diagnosed with a lung condition called Idiopathic Pulmonary Fibrosis or IPF. This is a progressive lung disease of unknown cause in which the capacity to breathe and to transfer oxygen into the bloodstream diminishes over time. Unfortunately, there is no cure for this condition, nor any treatment which improves or reverses its progression. The one possible treatment in some cases is a lung transplant. There is also one medication which was newly approved by the FDA last year which may slow down the progression of the disease somewhat. (For those of you who have done the Leadership Program, it may make you chuckle to know that as I write this, in my head, I want to now write…. “These are the facts of the situation and will not change….. You now will have one minute to speak to your ship-mates…..” Hmm….. I notice that I give this hard information and then move into making a joke…. so, I pause a moment, to let it sink in that I have just come out of the closet to you, and to know that you are now sitting with this information.

That’s the thing about Coming Out — as soon as you do, you put the other in a sort of Closet of their own. It has an impact. I remember 35 years ago when I told my Father that I was gay, and then realized that I had put him in the closet — he needed time to adjust and understand and grapple and be angry and mourn.

So, I realize that for some who read this, it has a big impact. As I write this, and I think of you reading this and reacting to this — I feel you, and I feel your love and concern.   I am so sorry to be giving you this information.

I don’t want to go into the details of the disease here — you can google it and get the synopsis. Transplant option aside, it is a terminal condition that will progress at some rate of speed in the years ahead.   I have begun taking the new medication, and am working with my Pulmonologist to prepare a case for a lung transplant (it is a long shot but not out of the question).

For now, my functioning is somewhat diminished but I am able to do the things that I love the most. I am able to do my work — in fact I am finding a new degree of “full permission” amidst my Leadership groups (so, watch out….) that I have never experienced before. I am cutting back on the amount of work and travel that I am doing – but I do want for everyone to know that I am not and have not retired!

My most joyful practice is being outside doing just about anything with Mario. This has created a profound sense of gratitude for the most simple moments of everyday.   My walks are shorter and inclines are tough to do, but I can still do them…  (I use a fitbit and walk about 11,000 paces each day with Mario).

My most cherished blessing is my time with my husband John. This has presented us with the most challenging times we have every faced — and most difficult conversations we have ever had. We are sharing a very deep sorrow together and separately that we never anticipated we would be experiencing. And, we dive into a depth of intimacy and tender closeness now that I never knew was possible. I am so very blessed to have him sharing my life.   We are also seizing the moments that we have NOW — our most fun project at the moment is wildly decorating the little condo that we purchased in Rockport to enjoy this summer….

I go up and down…. it is easy as I write this to sound like I am navigating this so well and so thoughtfully — as I write this I am in a reflective space, and I imagine you my friend here with me. What you don’t see is the moment that I feel exhausted and hugely cranky and I snap at an innocent store clerk who did absolutely nothing wrong. I have not (yet) written about how I fall into a feeling sorry for myself and feeling angry at the world place. These moments are every bit as true as the moments of being in touch with my gratitude.

For this, I must do an added salute to John — I know he is proud of me and in some moments I inspire him — but he also more than anyone else experiences the brunt of my most foul and nasty moments. He is a hero.

And so, my friends, there you have it —- I am breathing a bit freer having come out of this closet — and with that know that I perhaps have now placed a burden onto you that you did not have. It matters to me that I be able to be honest with you. If my life has been committed to one thing always, it has been learning and growth and being conscious. And so with this, too, I aspire to learn and to grow and to be conscious.

In our Leadership Program we talk a lot about the idea of “recovery” — of being about to become quickly aware when we have lost ourselves or our connection and to RECOVER. And so, I want to learn about a whole new sort of recovery. I think that in the difficult moments when I feel that I am suffering, I have lost touch with WHO I MOST TRULY AM. Those moments of suffering are moments of confusion when I think that I am my body or my disease, or my professional role or my physical ability or  any of the many other things I think about my identity….. and none of those are who I truly am. Recovery is about returning and recovering back to the very essential nature of WHO I AM and WHO YOU ARE. If I can become just a little bit better at that sort of recovery I will be a very satisfied and grateful man.

I am wondering if there is an “ask” here of some sort….  hmmm….  well, I ask that you not shy away from this or from me even if it makes you uncomfortable.    I have noticed that for some friends and family it is difficult to be with such difficult information, and some have virtually disappeared from my life.    I ask that you hold me as whole and unbroken, which is the case…. and not hold me as a victim.    What is happening to me is not exceptional — it is part of being human.  It is far worse than many experience, and far more easy that many others experience.  I need to be able to both acknowledge that this REALLY SUCKS and also how profoundly grateful and lucky I am at the exact same time.   Now, there is a paradox.

With love,

Art

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For years I have espoused the virtues of TRANSFORMATIVE growth and CREATIVE change…. in my clients, in leaders, in teams, in organizational systems…. They type of growth that comes along with unfolding new ways of seeing ourselves and the world, and the process of becoming aware of the limitations of old perspectives and beliefs. The magic of being able to create powerfully from an internal sense of passion and vision rather than fear-based reacting and problem-solving. And, I have dutifully paid lip-service to the importance and benefits of “incremental” learning and change — the step-by-step improvements and growth that happens as we practice a skill or try a slightly new approach. While not-so-secretly valuing “creative transformation” I have made sure to present the value of reacting quickly to resolve urgent problems.

Today as I walked my 7,500 steps around the indoor track of my local YMCA, clutching my 2-pound pink dumbells…. I thought about how ESSENTIAL is this period of VERY INCREMENTAL change for me and my recovery. I pondered this idea of transformative change versus incremental growth — of creative change as opposed to reactive problem solving.   All the while listening and bopping along to Meghan Trainer’s “All About That Bass…”

The experience of bypass surgery is a bit like playing one of those board games as a child when you land on the square that says “TAKE A THOUSAND STEPS BACKWARD AND BEGIN AGAIN….” Remember that feeling that you have been plunked back at the very beginning and must start all over again?

GRRRR! Powerlifting my powderpuff dumbell and REACTING!

In so many ways I feel that I am starting all over again….  and must build back up one very incremental step at a time.

At 5-weeks after surgery, I am just now at the point where I can begin cardio rehabilitation. I have very little stamina, and the simplest of tasks exhausts me. My very big step forward this week was to begin holding 2-pound dumbells and doing very simple arm exercises with them as I walk. My aspiration is that each day…. very very very slowly….. I will be able to make very small improvements and changes to what I am able to physically do — slightly increase my pace…. do just a few more arm raises than the last time…. be slightly less winded when I climb the stairs. I need to repeat the same exercise again and again and again to notice a very slight improvement.   It has always been far easier for me to jump out of an airplane than it is to prepare for a marathon…

And I wondered as I moved around the track…. “Am I in a creative or reactive mode here?”   I am proud to say that I am REACTING  and PROBLEM-SOLVING.   I have an intense internal conflict that makes me ANGRY, DISHEARTENED, sometimes feeling DESPAIR, and way-too-often very GRUMPY.   I do not like it and it needs to change…. it has me REACTING and PROBLEM-SOLVING.   In general, I am not “creating” and my action is not inspired by my high dream of possibility….  I am focused on SURVIVAL.   And, at times a catch a glimpse of the vision that I have for the life I long to live and I have not lost tough with my passion and love for life…  they remain.  But, I am growing a new-found and genuine appreciation for how essential it is to take BABY STEPS toward our growth — to try SLIGHTLY new things…. to make SMALL ADJUSTMENTS…. to build a new muscle one step at a time.

I believe that TRANSFORMATIVE LEARNING and INCREMENTAL GROWTH are like distinct instruments in a co-creative symphony and both have their part to play.    Up until now, I have not been valuing all the parts of the orchestra.    I know that as a leader and educator, this insight will change me — it will have me not ONLY strive to catalyze radical change, but also to pay careful attention to the ways in which steady and continuous improvement happens.

Now, back to the track.

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You may have seen pictures recently of me clutching this red-heart pillow….  and wondered what the heck it is….  well, when you have heart surgery you are given a heart pillow (or teddybear, or whatever….) to hold tightly to your chest when you need to do anything that impacts your breastbone, like breath or laugh or cough or God-forbid sneeze.   So, if you see someone walking slowly around your local mall or grocery store clutching a heart-shaped pillow, know that they have just had some sort of open heart surgery and are doing the very best they can!

My and my constant companion heart-pillow after surgery.

On January 7 I had open-heart surgery.  The surgical team took an artery from my right leg and a vein from my left forearm and grafted them onto two of my coronary arteries which, although previously “stented,” had become blocked again.   After a few days in intensive care and a few more days in the hospital, I came home on Sunday January 11th…  Today it is 3 weeks later…. Sunday February 1…    I have made it through the most difficult part of the recovery process, and have about 5 more weeks until being fully back “in the swing” of my life and work.    It has been a rollercoaster of intensity and I have had moments of utter despair, triumph, excruciating pain, surrender, gratitude, fear…. experiences all over the map.

It seems like there should be some WISDOM and MEANING that comes from all of this, doesn’t it?    If you are like me, when really bad things happen, you somehow can get through it all more easily if you know that it is happening for some worthwhile reason.

We like to believe that the forces of the universe deliver circumstances to our doorstep when we are ready to handle them…  that life is a series of events that come to us so that we can learn from them and grow.   We hold on to the notion that there is some sense to be made of the sometimes confusing way that life unfolds around us — that it INHERENTLY holds some truth and meaning.   Particularly when events cause us to suffer, we take some solace in the notion that there is some reason or logic or meaning in why things are as they are.   I have watched myself in this same inner struggle, striving to have my suffering be mitigated by the meaning and deeper truth of what was happening, if I could only see it.    What I discover, however, as bleak as it may sound, is that the events of our lives are inherently MEANINGLESS —  there is no inherent sense to be made of the tests and challenges that we must navigate on our journey.  It seems a bit blasphemous to say that….  somehow we are supposed to think that life inherently has meaning and purpose.   But, this conclusion is not just bleak and hopeless — it is actually a liberating paradox.

One of the experiences that is commonly reported by people who have had open-heart surgery is emotional upheaval in the weeks following surgery.  In particular, deep dips into despair or depression, and moments of uncontrollable tears happen regularly.   Being a ten-year veteran of heart disease and the proud vessel for 12 coronary stents that were implanted a decade ago – I had some understanding of the possible depression that might follow surgery.   I’m glad to say that I have not yet experienced bouts of depression this time around.   However…. during the first two weeks at home I have experienced wild emotional swings and periods of uncontrollable tears that seemingly well up from nowhere in any moment.   This happens in any setting and just happens….  my care-takers, bless their hearts, can attest to this having been with me in all sorts of setting when it has happened.

During my first week at home my husband John took me out to our local Whole Foods Market so that I could do my 10-minute “walk.”   Somewhere in my slow trek down the snack food aisle I suddenly was overcome by deep despair, and a sense that God had forsaken me….  that I was being rendered helpless and left defeated by a very cruel and unfair universe.   Poor John watched as I turned, sobbing and gasping for air, into the bags of whole-grain organic tortilla chips.   I felt angry and defeated — I thought “OK, God… you have brought me to my knees…. I surrender…..”   I wanted to know  WHY?????   Through my tears, I wanted to shout out to God that I was willing to be brought to my knees as long as there was some MEANINGFUL PURPOSE in it!   If I knew that I could learn something useful or gain some shred of wisdom, then I could more readily accept being brought to my knees.

Bargaining with God…  it feels familiar to me.  I want for this human life to be somehow “fair” and to “make sense” — for there to be some inherent karmic law that balances everything out at the end of the metaphorical day.   And, what I realized in that moment is that these notions are all a sort of wishful thinking that we construct so that we can more easily navigate the suffering of life.    There is no inherent meaning, and “fairness” does not factor into how life unfolds.   There is no purposeful lesson to be learned.  It just is.

The very strange thing is that as I realized all of this,  I first felt such a dark and hopeless sense of gloom —  and then I started to giggle.  Yes, I started to laugh.  Part of me was noticing how intensely melodramatic I was being.  A voice in my head was saying…. “Well, duh… Art…. you already know this….  you have a blank canvass here of circumstances and experiences and it is your opportunity to create meaning from it… you get to make it up….  It means NOTHING, which means you get to decide what it means for yourself.”    Because, you see….  we have the agency and wisdom and creativity to construct the world we experience and live through in every moment.    Life does not dictate meaning to us… it does not come with pre-packaged meaning…. rather, we construct the meaning of life in every moment.   One one had that can seem devoid of any hope but at the same time is incredibly liberating.

And so, then…. what does it mean?  What meaning am I constructing from the events of my life at the moment?

• I am courageous and can navigate pain.   People do not generally like to expose their vulnerability or disclose how difficult their struggles might be — including the reality of what it is like immediately following open-heart surgery.   This has been the most difficult and physically painful process I have ever navigated and it rendered me HELPLESS following surgery.  I learned that I can surrender to the difficult things…. I can accept being a very wounded animal and can gracefully allow others to care for me and hold me up.   I can accept and move willingly into the pain and suffering that must happen and I can navigate it and construct meaning from it.
• I am not the circumstances nor roles nor well-though out plans of my life.   When I learned that I needed to urgently undergo bypass surgery, one of my reactions was “But wait…. this can’t be happening now because I have PLANS.  I have work projects scheduled and groups to lead and this just isn’t a convenient time!”   It is quite a jolt to, within one week, need to cancel EVERYTHING on my schedule for several months ahead.   I was confronted by huge discomfort that — without all those work projects — I would somehow cease to be.  Without the roles that I play, who would I be? I was struck by how much I have defined my identity by my professional activity and role.  It forces me to dig deeper to a more essential sense of who I am and what matters in life.
• I am not invincible, and neither are you.  I like to pretend that I am some sort of invincible super-hero who does not need help, who is strong and independent… who always helps others but is not vulnerable himself.  This experience reminds me in a new way of how human we all are, and of the power that comes from a willingness to be vulnerable and to yield.   Many want to help and support and provide care in times like these, and this experience provides repeated constant practice in allowing others to give — in accepting love and support with grace and with gratitude.   I have been very blessed to have a core group of friends around me that have loved me and cared for me during these weeks… I have had acupuncture treatments and massages and meals and visits and errands and hands to hold, and am deeply grateful.
• And, this is practice as well in having compassion and understanding that everyone is different and has a different way of responding in situations.  For some, it is immensely uncomfortable to “be with” the suffering of a seriously ill or injured loved one.   Some of my closest friends and family have needed to take a step back during this difficult period… to distance themselves from it in some way.   I notice how quick I am to judge when others who are friends or family seem to be unable to reach out or be present with what is happening.   It is all too easy to take offense or interpret their reactions personally, rather than to have compassion and recognize that they are doing the very best that they can.

This has been a time to take stock of life with my husband John — to ask ourselves what really matters and to assess how we most want to live our lives in the years ahead.   I made a decision to travel less and take more time at home, which means transitioning out of the business that I have helped to create in Colombia South America.  It prompted a somewhat impulsive saying YES to purchasing a vacation condo in Rockport on the North Shore of Massachusetts as a get-away place for me and John and Mario.

More to come.  This is just week 3 of an 8-week recovery period.   My intent is to keep navigating this process consciously… to not expect there to be logic or meaning or justice in the circumstances but to use every moment as an opportunity to CHOOSE the meaning that I construct from the ongoing unfolding of life.

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We walk along Fellsmere Pond and I spot an elderly man sitting on the bench.  His head is down and I make up that he is perhaps lonely.   Mario Antonio Doodle walks by my side, sniffing all that he can along the side of the pond… not yet aware of the man on the bench.   As we approach, the man looks up and I see his face light up as he spots Mario — ahh…. he is a dog-lover.  And, Mario notices too — he senses a friendly being and wants to say hi.   We approach and Mario sits in front of the man… stretching his nose out to sniff, wanting to lick his hand, and bowing his head for a scratch.   As the man scratches Mario’s neck, he comes alive in that moment and smiles broadly, his eyes twinkling.  “Oh, what a good dog,” he says.

This happens a lot along Fellsmere Pond…  now there are various people who call out “Mario!” when they see him coming around the bend.    As much as I try to prod Mario into becoming an ace frisbee dog and agility champ – his true gift is simply eliciting smiles and creating moments of joy in people’s lives.  

And so, I made it official…. took a class and exam to get him certified as a Therapy Dog.  No rigorous obedience or tricks required, simply a loving stable friendly presence.   

I had some doubts today as I sat in bumper-to-bumper traffic making our way to visit four of Mario’s new “clients” at Marina Bay.  Each an elderly patient in a hospice setting, each approaching the end of life.   I suspected that the bigger challenge would be with me, not with Mario.   I felt unsure of how to be and what to say.

I learned that my role in this is secondary — I am the handler and facilitator.  I can help to set the stage and manage the interactions — but my biggest job is to be unobtrusive and stay out of the way.   What if the patients feel uncomfortable?   What if I don’t know what to say?   I noticed pretty quickly that Mario did not seem to have any of these apprehensions on his mind — he just showed up being himself.

We’re back home now after visiting with four patients.  I find myself with tears welling up, which I cannot entirely explain.   We spent perhaps a total of 45 minutes actually visiting with patients.  Of those 45 minutes, the patients probably spent 30 of them lost in their own world, unresponsive.  It is the other 15 minutes that moves me deeply.  For each patient, there was a moment of coming alive… of coming present…. of having a brief encounter with this pooch named Mario.   A minute of remembering and telling me about that dog that they had.   A momentary smile lighting up their face. 

I am grateful for the gift that they each gave to me today — the gift of remembering who we are, just for an instant.  And of reminding me once again that this moment is the only moment that we have.

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Funny how sometimes the biggest learnings come from unforeseen places.  I have decided, finally, to hang up my tights and bring an end to my Flying Trapeze career, much to the relief of my heart and sore shoulders.   You see, throughout the seven months of Trapeze classes, a tiny soft voice kept nudging me in various moments…. “uh, excuse me…. are you sure this activity will be good for you?  You, um, have heart disease, remember?”   As is often the case in life, I tend to push that voice to the side until it screams more loudly for recognition…“OK, bud….  how about if I rip some of the tendons in your shoulders…. will that get your attention?”    On a deeper level, the process had me grapple more directly with my tendency toward reckless stimulation at the expense of taking better care of myself.  It raised the question — on the Trapeze and in Life — Who Will Catch Me?   I will come back to this theme, but first want to share what I have learned about the RELEASE part of the Flying Trapeze.

One way or another when doing the Flying Trapeze, there comes a moment when you must release the bar…. either to fly into the air, to reach for the catcher, or simply to let go and drop into the net.   Hmmm…. sounds a bit like life.  One way or another when living a life there comes a moment when each one of us dies… a moment when our physical life ends and somehow we let go and release.

In my brief career as a Flyer, I have experienced many swings where I have mostly just clung to the bar, chalky palms gripping as tightly as they can all the while saying to myself “just hang on, it will be over soon…”  During these swings,   my main focus is to hang on tightly to the one thing that I think is secure – namely, the bar.   And then…. yes, every single time…. comes a moment when I have arrived at the end of the swing and there I am still clinging to the bar… either to linger a bit longer or not…. but ultimately with just one option and direction to go.   On some other swings, I allowed myself to actually BE in the swing – to immerse in it, to feel it, to experience it. These swings, some with tricks and some just for practice, were exhilarating and alive and truly wondrous with a savoring of each brief moment in the air.  But…  I notice that either way I have chosen to do it, the swing still ends up in the same place — with the need to let go.

I relish the experience of freedom.   I feel grateful to experience a sense of freedom often in my life — they are the moments when I am connected to everything and to nothing all at the same time.   It happens in the quiet moments in the early morning when I sit outside in my garden and something catches my eye.   It happens when I connect deeply with another and feel the intimate human thread that connects us all… every single one of us.   It happens in transcendent moments when I gaze out to the sea… when I gain the biggest picture possible.   I notice that “free” does not mean the same thing as “happy” — it comes in moments of grief as well, particularly when people who I love have died and I feel their spirit around and within me.

I am aware, too, of the vast amount of time I spend in a state that is far from the experience of freedom — when I feel trapped in some sort of spiral that is hard to escape.  As I think of those times, it seems that fear is most common element — fear of losing something…. my family, my financial security, my health, my reputation, my status or power.   As I reflect on myself in that state, I see that out of that fear I cling tightly to the identities that I have created to define me to the world around me — like ivory castle towers that now must be maintained and defended against some unknown threat.   If I just cling tightly enough I will somehow survive until the end…

I have been lucky to have found several soulmates in this life.  One of them and the first, Cydney, taught me very valuable lessons about living and dying before she lost her battle with breast cancer twelve years ago.   Death was an ally that woke her up in the final years of her life, that prompted her to knock down the ivory towers of her identity to live her life fully before leaving.   I read this poem at her funeral, and it is always close to my heart:

I will not die an unlived life.
I will not live in fear
of falling or catching fire.

I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible;
to loosen my heart
until it becomes a wing,
a torch, a promise.

I choose to risk my significance,
to live so that which came to me as seed
goes to the next as blossom,
and that which came to me as blossom,
goes on as fruit.

In the “here and now” objective world we live in, I am many things and wear many hats, each bringing  aspects that construct my identity.  Some aspects have well honed skills and others – by design – do not… some hats I relish wearing and others frustrate me.   In some moments these parts of me are happy, satisfied or proud — and in others are terrified or sad or lonely.    I am a husband, a brother, a man, a neighbor, a consultant, a coach, an uncle, a friend, a competitor, a student, a teacher, a citizen… lots of identities that overlap in various ways… each with its own set of expectations and hopes and fears.  These “real” aspects of me are sometimes content and sometimes not – but rarely experience what I would call freedom.  When it seems to me that “I am” these things – that they represent who I am – a potential suddenly also exists that I might somehow lose them… that they could be lost or stolen or discarded.  And then, of course, if that were to happen, who would I then be?   This illusion creates a frightened clamoring and clinging and striving to hang on… to build the ivory tower walls higher or make them more impenetrable.  For this reason the shaman Don Juan counsels his student Castaneda that he must “lose his personal history.”   This clinging to identity feels much like clinging to the Trapeze bar high above the net.

On another level, a more dreamland and fantastic level — I am an adventurer, a romantic, a lover, a wizard, a dare-devil and risk-taker, a dog-whisperer, a dancer, an activist and an alchemist.  These are aspects of who I imagine and dream myself to be, and they bring a zest and meaning and color to life.  As I notice these dreamy parts, I notice too what seems to be missing from this list… where is the self-nurturer and caretaker and steward?  Somewhere along the way, that part got marginalized and cast aside.   These parts reach toward freedom… they stretch me and grow me… they bring a rich texture to life that transforms in from a series of events into an unfolding mythic story.  While I approach the doorway to freedom in these dreamlike states, these figures do not quite carry me the whole way through.

Then, there is another level even deeper than dreams of sentient essence and transcendent experience.  This is an ineffable state and the moment that I describe it with any words it becomes diminished from what it is… I can only point to it.   I know that it is state that I have always known.  My earliest memories of it come from when I would walk down to the beach as a young boy late at night and find an empty Lifeguard Chair.  I would climb up to the seat, way above the deserted beach, and gaze out over the sea to simply look at the moon and its reflection on the water.

Soon my fixed identities and even dreamlike figures would disappear and I someone knew that everything made sense and that I was a part of it all… as though part of me was the moon reflecting on itself in the water.   That was a space of freedom.

I have written before of my fascination with flying and love for figure skating on ice or springboard diving… early precursors to the Flying Trapeze.  Sometimes I dream of those moments and have the experience of disappearing into the movement and the music… of somehow becoming it.  In those moments too, I know freedom.

And so, this brings me back to the question:  Who Catches Me?

My ally Death helps me to answer this question, because he keeps me vigilant and conscious that this life is fleeting and precious.  Death will come as it does to all it its time, but it is not here quite yet.  He has introduced me to a new idea of The Catcher… the one who cares for me, nurtures me, sustains me.   In the “here and now” level of things, it is the part of me that is aware enough to recognize choices I make every day of how I  eat and move and sleep and work and relax.. who has attention on what actions serve me and the parts I want to grow, and what actions do not.  He is learning to pay closer attention to the subtle signals poking me for attention.   On another level, the more dreamlike one, there is a new archetype present that I do not know very well… the benevolent, compassionate, and nurturing one who values this life I have…. who knows that I deserve to be here and that life is worth living… who knows that regardless of what may go on around me, that I myself am trustworthy.  I plan to spend more time getting to know this one.

And, beneath all of that…. when I realize that ultimately there is not really anyone here to catch me (or any of us) in the end and I ask myself, well then Who Catches Me?   I think of what indigenous tribes refer to as the Sacred Hoop of Life  that contains us all — the place that I know well from my time atop the Life Guard Chair as a young boy.   In the Sacred Hoop of Life I am and we are all held.  I have always been shy about acknowledging the spiritual essence of who I am and how I experience life, and yet I know it to be the most rich source of freedom available.  And that is the essence of it, of freedom, and it is here around us and in us in every moment… It is freedom here and now in life, not an imagined freedom that may or may not come in death.   I plan to spend more time knowing this place, too.

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