Being Alone vs. Being With Myself

•July 1, 2017 • 2 Comments

When Art used to travel frequently for work, as he was leaving the house he would give me a forlorn look and tell me how much he was going to miss me. I’d look forlorn back and say, “I feel so bad for you. When you go away you’re all alone but I still have myself, and I’m such good company!” It made me laugh every time, no matter how many times I used the line on him. He would understandably roll his eyes, shake his head and tell me he never knew anyone who found themselves as entertaining as me.

Since Art’s death I’ve spent a lot of time in my own company. As it turns out, being with myself is a much bigger challenge than I had imagined. People have encouraged me to rediscover myself since Art’s death. “Rediscover the things you used to love to do,” they say. Others, including Art, urged me to allow myself to be transformed by this experience of love and loss. “If you allow yourself to stay open – to really experience all that this experience brings, it will change you deeply,” he said. I’ve been challenged by others to give myself full permission to pursue my deepest desires and whimsical impulses.

Each of these ideas sounds inspiring and intriguing to me. The key to all this self-discovery and transformation is simply being with oneself. With 150 days under my belt since Art’s death one would think that I’ve had plenty of time to be with myself. As it turns out I’ve spent lots of time alone but very little time with myself.

As it turns out being alone and being with oneself are not synonymous. It is safe to say I have mastered the alone part of the equation. My daily routine remains largely the same as it was with Art but each moment is punctuated by his absence. I walk Mario alone in the morning and after work. After I sit in our backyard swing alone. I go into the house and make dinner alone. This alone. That alone. I sink into the sofa and one of the picture books Art made for me catches my eye on the coffee table. I feel as though everything points my attention towards Art, his absence and my memories of him.

In the last couple of months I have consciously tried to shift my focus back towards me. The first time was excruciating as I struggled to look fully at the image of myself that came into my mind’s eye. The image was of me sitting alone, perfectly still. Small. Vulnerable. In this view, for the first time I did not see the absence of Art but the fullness of my new solitary being. It was like one of those optical illusions that contains two separate images and if you adjust your view slightly, you see one or the other. My perspective kept shifting. In one perspective, it was as if Art had been cut out of the picture with scissors and I was left standing next to the gaping hole. In the other, nothing was missing – it was just me. Alone but still whole.

For maybe the first time my tears weren’t all about Art, they were about me. I felt fully the heaviness of my own body and the way it feels weighed down. I had been unable to look closely at myself for many months. It’s like when you pass by a mirror or window and catch a glimpse of your reflection out of the corner of your eye and then turn away. I have been unable and unwilling to stop and look at myself full-on. I haven’t wanted to see myself standing alone, so tired and sad. I haven’t wanted to claim my own space in the world and occupy it fully without Art.

I knew it was time to begin the process of paving a path back to myself so I signed up for a five week meditation class. I have meditated off and on over the years but never with the discipline I’d like.  Turns out that spending 90 minutes a week on an uncomfortable cushion can be a real shock to the system! Being with myself is much more than simply noticing the absence of Art. BEING is an active process, not a passive state of being. It is more than the absence of Art. It is coming into full awareness of my thoughts and feelings and simply sitting with them.

What has quickly become most noticeable is It that being with myself means being with the duality of everything. Immense grief alongside gratitude. A longing to keep Art close while also needing to let him go. A desire to resolve things while also surrendering to the unfolding of life on its own terms. Moments of laughter that lay on top of a deep, underlying sadness. I suppose this is nothing new. Many of us have felt both dread and excitement when we’re about to take a leap into new territory. In my deepest sadness I also recognize the depth of my love for Art. They are opposite sides of the same coin.

One day last week while I was walking home from the subway, I had a minute where I nearly forgot that Art had died. In that moment, I felt the way I always felt walking home prior to January 10. I was excited, thinking about everything I’d say to him when I walked in. I anticipated cooking dinner together, his eagerness to hear about my day and mine to hear about his. Suddenly reality smacked me upside the head again and I came back to this new reality. I noticed how I lost all my excitement. When I take a deep breath and turn inward, I realize I don’t feel as courageous, certain or adventurous as I did when Art was alive.

And so now the real work begins. While being with myself means recognizing the range of thoughts and emotions I – and all of us – encounter, I’ve discovered that the bigger challenge is not simply noticing all my thoughts and feelings. The bigger challenge lies in not reacting to all of them. Real growth lies in trying NOT to change them, dismiss them, fix them or otherwise obliterate them.   We are socialized to view difficult thoughts and feelings as problems to solve. In noticing that I feel less courageous, my first inclination is to try to solve that problem…to figure out a way to regain my courage and demonstrate it to myself. But instead I stop and just notice how it feels to be less courageous. I believe that if I can be with my own lack of courage, perhaps I can be with others who are struggling similarly. Maybe it will strengthen my empathic muscle and will, conversely, heighten my awareness of those moments in the future when I feel brave. Maybe simply being with my longing to have Art back with me, opens me up more to feeling the fullness of our love. He may be dead but love is still alive. It is still in me and only when I can slow down enough to really be with myself, can I find this reservoir of love – the love so generously bestowed on me by others and the love in me that needs to find its full expression.

I suspect, like many of us, I’m quite good at being with others in both their pain and joy. I’m a pretty good listener, able to really feel the feelings of others, hear what’s being said beneath the surface and be fully present. And like many of us, I don’t really apply those skills to myself. It is easy to turn away from oneself, to be distracted by the world around us and consumed our daily obligations and schedules. But now, to truly discover who I am separate from my identity as Art’s husband (the identity I have loved more than any other I have claimed!), I have to extend the same deep listening and presence to myself.

When I quiet myself, listen and observe with more heightened awareness and presence, my view of myself starts to expand. For example, until now I thought of grief as a big, dark, impenetrable wall.   It all felt the same – overwhelming, relentless and unpredictable. Nothing distinguished one moment of grief from another. Slowly I have started to notice that all grief is not the same. It has many shades and sources. Sometimes my grief is sheer loneliness. Other times I grieve at my memories of how Art suffered. And at other times I grieve when I remember how it felt to felt to be so deeply loved…to be greeted with loving surprises each day, with random messages of love and encouragement. All grief is not the same.

As the subtleties of grief – and other emotions – become clearer, I also notice that all of me is not grieving all the time. If I look at myself with a sharper focus, if I watch and listen with more awareness, I see parts of me that are excited, anticipating something new, still marveling at the world around me. I think about the times when I’ve been sick or in pain and how I’ve allowed the sickness or pain define me. What if we were able to hold a more balanced view and see the parts of ourselves that are not sick, in pain, grieving or overwhelmed? What if I could still see my wholeness while feeling so broken? At any one point I am not defined by any singular thought, emotion or state of being. None of us are.

When Art was diagnosed with dreaded IPF, we set a very explicit intention of opening ourselves up not just to one another but to the world around us…to share our experience, challenges and joy in the hope that we could continue to open ourselves to love. We did not want to get to the end of his life and feel as if we had shrunk back but rather wanted to feel that we had leaned into the richness of life. And we did. Now, if I am to continue to live in this same way I see that it requires me to be fully with myself. To be with my pain and suffering but with my joy and resilience as well. There is a deep vulnerability in being with myself – opening myself up to the parts of me I love and those that…well…I have less than love for. It is all there and is all real.

And so, if you stop to listen, look and feel deeply within yourself, what do YOU find?







The Ring of Truth

•March 12, 2017 • 6 Comments
Art's wedding ring

Art’s wedding ring

When I brought my first-grade pictures home from school, my parents didn’t notice anything unusual. It showed a chubby, neatly dressed boy with glasses smiling into the camera looking a little shy. It seemed to capture me accurately. The lie wasn’t discovered until three years later when, in a parent-teacher conference, my fourth-grade teacher told my parents that I often squinted in class. She wondered if my parents had ever taken me to an eye doctor. They were perplexed by the question as they had dutifully gotten eyeglasses for me at the first sign of a vision problem.   They understandably assumed I wore my glasses every day and my picture confirmed this for them. Or so they thought.

The gig was up. My teacher told them that I never wore eyeglasses in school. The truth was that I had been teased early-on in first grade by two girls and I was too ashamed to wear my glasses ever again. Every year when school pictures were taken, I’d subtly slide the glasses onto my nose. As soon as the last camera flash went off, my glasses would go into hiding for another year.

The pictures conspired with me to withhold the truth. The photographs created a certain impression of me that was false. The boy in the photographs didn’t match the reality of my everyday life.

I have recently found myself struggling with this dilemma again, though the specific shape of the situation is different. Last week I removed my wedding ring for the first time. I’m not sure if I’ll put it back on again but for the last few weeks it hasn’t felt right to me. It has felt as if my ring was telling a story about me that isn’t entirely true anymore.

For me, my wedding ring represented my marriage to Art. It represented our commitment to one another – the ideals, values and promises we sought to live by each day. It represented the fact that there was someone waiting for me at home, someone with whom I shared every detail of daily life. I loved my ring and the constant reminder it provided. I would often squeeze my fingers together so I could feel the ring on my hand and feel a surge of pride, knowing I was married to Art. I would sometimes spin it around on my finger and go into a dreamlike state thinking about him, our life together and our future. I liked to pull it half-way up my finger so I could see the lasting impression its edges made in my skin, reminding how durable our commitment was and how much a part of me our marriage had become. It reminded me that he was home waiting for me or away on business thinking of me as I was him.

Often when I’m riding the subway, I notice whether people are wearing wedding rings or not. If they are, my mind wanders as I imagine who they are married to, how they met, what their spouse looks like and what their marriage is like. Their wedding rings tell a story, even if I make much of it up myself. I wondered if any of them wondered about the story hidden behind my ring. Could they imagine their way to Art?

Lately I have noticed that having the ring on my hand doesn’t match my how I feel or my new daily reality without Art’s physical presence. Like my eyeglasses, it was telling a story about me that no longer feels true. I certainly still feel married to Art but he isn’t home waiting for me or away on business anymore. We don’t go to bed together every night. Our ideals, values and aspirations live just within me now. They cannot be expressed in a visible or dynamic way here in the physical world. After Art’s death, when I would squeeze the ring between my fingers as I had done many times, it just hurt. It didn’t release that little charge I used to feel.

Art and I discussed many things about death and life after death. We both believe that when the spirit or soul leaves the body, the body no longer really represents the person. They simply aren’t there anymore. Their spirit – their essence – has left them and the body remains behind, merely a wrapper that contained their spirit while here on earth. It has felt to me as if my wedding ring is similar. Once Art died, the spirit of our marriage was no longer contained in that ring. It became a piece of jewelry that lost some of its soul or magical powers. My wedding ring will always represent my abiding love for Art and the commitment I made to him, but the reality of our marriage is very different today.

Compared to my ring, Art’s ring tells a different story. His ring originally belonged to my paternal grandfather and we believe he brought it with him from Sicily when he came to the United States. When my grandfather died, the ring went to one of my uncles. As it turns out, my uncle was gay and had led a very closeted life until he was 70 years old. At the time of his 70th birthday he had been diagnosed with lung cancer and seemingly did not have long to live. At his 70th birthday gathering, he invited a group of his close gay friends to join our family for the first time. It was his coming out of sorts. He lived to be 75 and I think those short five years provided some healing for him. Before he died, he gave me the ring.

When Art and I married I slid this ring onto his finger. It’s a thick gold band with interlocking gold loops that form a small chain across the top. We decided that the gold chain represented the connectedness of the story behind this ring – the bringing together of generations of Gattos. It represented a place in the Gatto family that now belonged to Art and identified him as part Gatto too. It carried the first story of coming out in my family. It linked us back to my grandparents and their homeland. And when we married it represented Art’s commitment to me. In the same way the ring infused Art with this history, Art did the same in return. By wearing the ring, Art has infused it with our love story.

When I took my wedding ring off my left hand, I slid Art’s ring onto my right. When I squeeze my hand together, the ring grounds me. I know how much Art loved this ring. It seems to bring my whole life together. I have always loved the part of wedding ceremonies when the officiant explains that rings are a symbol of love and marriage as they have no beginning and no end. Now I wear the ring and it reminds me that a story is still unfolding. My family history and my marriage to Art are the most profound pieces of that story, but the ring reminds me that there is more to come. When I eventually and finally take this ring off, it will hold another chapter that hasn’t yet been written. And all the stories being represented by this ring are part of an even bigger story of love, struggle, triumph and the durability of the human spirit. This ring and this story are what are true for me now. It links me to the past and promises a future.

Taking my wedding ring off feels like another “coming out.” Coming out often happens when we can no longer pretend to be someone that we aren’t. It is a way of claiming our own truth and defining who we are – allowing all the pieces of our identity to come together in a new way. It allows us to embrace who we are in a more authentic way. Many people postpone coming out because they aren’t ready to face this reality. In the case of coming out as LGBTQ, sometimes people even loathe this part of themselves and keep pushing against the truth – trying to fake it and even deny the truth to themselves. I get it. Not a day goes by when I don’t wake up wanting to believe that Art is still with me. Though it happens a little less frequently now, every day I’m hit by waves of nausea when I fully embrace the truth. I feel weak and dizzy. I don’t want to face it and I definitely don’t want to integrate this new part of my identity – that I am a widower.

My heart is broken and keeping the ring on felt like a betrayal of the truth of my pain – a betrayal of Art and the huge gap his absence has created. Continuing to wear it – at least right now – felt as if I was acting as if nothing had changed. My grief is partly about missing the simple pleasures of sharing day-to-day life with one another. I miss the little notes we left for one another. I miss his late afternoon texts and messages telling me how much he was looking forward to me coming home. I miss making dinner together and catching up. Wearing the ring didn’t acknowledge the huge loss I feel in my daily life.

All of this has made me wonder what else in my life isn’t aligned. Do I create images or impressions of myself that are not entirely true? Do I compromise who I am or allow my identity to be altered by the world around me rather than by the values I hold dear? Are my values apparent to others and evidenced by how I live?  Am I living in alignment with all I know and feel is true about me or am I somehow faking it?  For now, I am one step closer to speaking and living my truth on my terms.  What about you?

What? I have to surrender too?!

•February 15, 2017 • 15 Comments

By John Gatto, Art’s husbandblog-pic

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 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.



Slow it down by half… enjoy it twice as much

•December 9, 2016 • Leave a Comment

(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.


Digging Deep: On Living, Loving and Dying

•May 20, 2016 • 7 Comments


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.


Mirror Mirror on the Wall…… An Ode to Ego and Shame and Crossing Edges

•August 17, 2015 • 6 Comments

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..

Average guys on a beach day

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...

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.

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.

Welcome to the IPF “Be Here Now” Bootcamp

•May 24, 2015 • 6 Comments

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

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

’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

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,