comfort is over-rated — return to home page

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

~ by Art on May 24, 2015.

Posted in Uncategorized