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 possible 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.
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?
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,
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.
John and Art are married and live in Malden and Rockport, Massachusetts with their canine superhero Mario. John is a social worker professionally and currently runs the Health division at the Justice Resource Institute in Boston. Art has been a leadership development consultant, entrepreneur, and leadership coach for the past fifteen years and is easing his way into retirement.