My whole life has changed since I started working in palliative care…
A coworker tells me this. We talk about travel, about finances, about our relationships. How our whole world view these days is through the lens of a constant awareness that death and dying is inevitable, that life is short. That we never know what is around the next corner, and we only
get one chance to make the most of this life we get to live. This whole conversation happens as we walk from our table for lunch back into our conference, it’s but minutes but there is a deep understanding in that moment.
I sit in a team meeting, we talk about changes in our program, transitions, grief. We talk about death, of our patients, of previous partnerships, of what we once knew. We talk about what we know now, what we hope is to come. We sit in silence. A coworker chimes in at the end with a “pallet cleanser:” she suggests that perhaps we watch K pop Demon Hunters or listen to the Shrek soundtrack. We all laugh. This is what it is all about.
When I first started working as a pediatric palliative care specialist, my manager introduced me to the concept of a “liminal space.” She shared this in the context of me transitioning from bedside nursing to palliative care. Little did I know, I would come to live in a liminal space. The space between life and death, grief and joy. It’s everything, it’s everywhere, it happens all at once, in all we do. As this transition in my career came somewhat without warning and yet with big blinding lights, I had no idea what I was about to walk into.
In this liminal space, I have found myself no longer to be who I was working as a bedside nurse but also not yet who I am becoming. As I unlearned much of what I had been taught as a bedside nurse, I grew what it meant to meet individuals where they were at without an agenda. I learned to unravel many of the beliefs I built my career upon; to turn inward to better understand my own biases, to hold more neutral space. We are not here to solve others’ problems, but to help others better understand their owns truths. In doing so, I coincidentally unraveled the narratives that have shaped my very own life. In meeting my patients and families more wholly, I learned to more wholly meet myself.
As I reflect on the past two years since starting in palliative care, a few moments stand out.
A family asks our team how they are supposed to do this. “This” meaning navigate a devastating diagnosis and decision making amidst so much uncertainty. We answer with the knowledge that this is an extremely individual and personal process, and while there is a lot we cannot know, what we do know is that parents most often make the right choices for their child. A couple of weeks later they look at me and ask “can we do this.” Go home, make decisions for their child, live amidst such deep uncertainty. I answer with the utmost honesty in sharing that they already are. With courage and grace that they are wholly unaware of, they are walking the very path they are uncertain they can do.
It’s a sunny spring day and I’m walking down the hallway to a family who has chosen to redirect care of their one week old baby girl following a devastating birth event. The parents had shared that this baby was supposed to be the completion of their family with five year old twins who were eager to become big sisters. As we near the room, I see the twins dancing around the crib performing a choreographed dance with their mother and smiles on their faces. It’s just one day before their baby sister will die, I can see the pain in their mother’s eyes between smiles so clearly. In this way, the grief and joy in this moment swirl around one another so concretely it’s palpable.
A colleague is recounting an experience with the team where a trainee asked to clarify that we don’t, in fact, sit around and talk about death all day. They ask, well if not death and dying, what do we talk about? Our colleague answers with this: living.
As I walk this journey of discernment exploring what may come next in my career, and really my life, I too have felt met with so much uncertainty. In the uncertainty, I have been met with fear, anxiety, and loss. Loss of my sense of security, loss of what I thought my life may look like, loss of my false sense of control. When I think about how I have learned to live in this space, I recognize with such certainty that it has been my patients and families from whom I have learned the most. While the challenges I face are far from anything compared to that of critically ill child, the paths marred by fear and uncertainty parallel one another. And in this parallel path of waiting for what is to come next, I see the ways in which working as a palliative care specialist has prepared me for life. For living in uncertainty, for holding space for both grief and joy, for leaning in, for facing the hard stuff.
For me, these days, there is no way to see grief without joy or vice versa. I have seen too much death to not know the love that is deeply interlaced with these endings. To not recognize with a grounded understanding that it’s this grief that teaches us what real joy feels like. And in learning about death, what we really learn about is life. In our joy, and our living, there is knowledge that we could lose it at any moment. It gives us all the more reason to lean in.
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