The Power of Shared Experience
When I worked as a hospital and hospice chaplain, one of the lessons I learned was the power of sharing an experience, joyful or sorrowful, with another. Life experiences can inextricably tie us to those faces we see in our memories. I remember one family in particular, whose daughter was a pediatric hospice patient. We worked as a team: doctor, nurse, chaplain, social worker, nurse tech (to help with bathing and toileting). We often made visits to this family, both individually and together, through the months she fought for her life. We shared with each other about the difficulties the family faced, and we also leaned on each other when the grief was heavy. You see, home hospice is a very unique place to minister and serve.
As a member of the hospice care team, I was ‘assigned’ to a family who had recently been referred to hospice. Most of our patients and their families were served in their homes. We were invited into living rooms, dining rooms, and bedrooms of our patients. Their homes, the place they had come to associate with comfort, now became crowded with medical equipment and new people whose job it was to help them manage end of life. A hospice diagnosis is one that, given a typical disease process, assumes a patient will die within six months. We met families on all points of the spectrum of ‘acceptance’ of this prognosis. Some were in complete denial, but accepted hospice because the patient’s doctor insisted. Some had plenty of emotional and spiritual support outside of the hospice team and only wanted the nursing and medical specialty care of pain control at the end of life. Still others were eager to meet and utilize the help of the entire team, calling on us at any time to help them come to make peace out of an otherwise painful impending loss.
The aforementioned family became very special to all of us on the team in different ways. Their dedication to their daughter and the ways in which our hospice team was welcomed into the home and the story touched us all deeply. They never gave up hope, but they wanted to face each day realistically. We offered the physical, emotional, and spiritual help that we could and they were grateful. On the night that the patient took her last breath, we were all there. We had gathered to support the family and to help them walk across the finish line of their days as caregivers for their daughter.
I had been present for many deaths before. But what I wasn’t prepared for was the intense sense of closeness to my team after that night. When we all left the home, it was around 2 am. But we all just stood in the driveway, talking, and finally decided to go to Waffle House together. I think it’s because we just weren’t ready to part ways after what we’d just experienced. We were the only ones who knew what it was like to be part of that little girl’s hospice team, and what it felt like to have been allowed into the home for the past few months, but to have to walk away from this family now, since our professional roles were at an end.
After that experience, and others to follow, I was extremely grateful to my team leader who made herself available to us to debrief. We were given space to talk about the strange relationship that forms between a hospice team member and the families we served. We processed the need for good professional boundaries while still remaining emotionally engaged. We created our own rituals to remember our patients, so that we had a way to honor them and all that they taught us. Even now, years later, I remember the families and the unique individuals who formed a team to support them. I am honored and proud to have been part of those sacred moments.
Fast forward 12 years.
Grief has a funny way of showing up in unexpected places.
My friend Katherine just returned to Kudjip after several months away. In that time, she had a baby (a miracle story for another day), and a few months later, her family was devastated with the news that her father, Lincoln Stevens, was facing a terrible fight with cancer. It quickly became clear that treatments were not going to be successful, and Lincoln went to be with the Lord.
Katherine has been a true friend to me during our time at Kudjip. We’ve not only shared the sorrows and joys of daily life here, but we’ve been able to talk about our own spiritual formation, family, and parenting. One of her kids shares similar struggles with our sweet girl. Katherine is one of the wisest, most generous people I know. She parents with grace and honesty. I have learned much from watching her and I will be forever grateful for God’s provision in the friendships I’ve made here.
When her father received his diagnosis, it was within days of my dad’s colon cancer diagnosis. They were the same age: 69. We messaged each other almost daily, checking in, sharing scripture and other encouragements with one another as we navigated this new and unknown path; She in the same town with her dad, me 11,000 miles from mine. When it became clear that her dad was making his journey to Heaven, I found myself grateful that she was there. No one expected that their time in the States would be as long as it was (thanks covid), but in this way, I was so glad for her and her family that she could be there.
When Katherine approached me this past Sunday at an event, I could see her eyes shining with tears. She said, “I’ve been thinking about you a lot.” She shared that it was a comfort to her to come back to Kudjip, knowing that there are people here who knew her dad. He had visited more than once and had gotten to know some of the Papua New Guineans and other missionaries. He made an impact here at Kudjip and she said that, for her, coming back to a place where he was known and loved made her feel more at peace. She said she had thought about me coming here, and realized that no one had known my sister or the journey of grief I’d walked for the past 21 years since she died. She said she had never thought about how hard that would be until she experienced it.
I was floored. I don’t think anyone had ever had that kind of insight into the lasting affects of grief, outside my hospice team. As she spoke, I felt a little lonely corner of my heart begin to open. That little lonely corner is the place I hold my grief. It’s always there, not often visible to anyone, and is rarely recognized. I thanked her. What power we all hold to give others the gift of being known, seen, and loved! Not only had we shared the experience of our dads and their respective diagnoses, but we were now connected by the acknowledgement of another's grief.
As I thought about her comments to me over the next few days, I began to think about those hospice moments with my team and the countless shared experiences we had. They weren’t all sad! Once, for a group activity, I went to a Goodwill store and purchased some old plates. We had been through a few difficult deaths in recent days, and we needed some tension relief. So we all went outside, spread out a tarp, and smashed those plates into smithereens. It was good. It was needed. And we did it together.
In 2017, we moved to Papua New Guinea to serve as missionaries with the Church of the Nazarene. We live on a mission station in the highlands of PNG, right in the center of the country. If I were to dream up a place that is completely different from my ‘norm’ both culturally and in all other ways, this would be it. We had some preconceived notions about what it would be like, some of which were accurate, others that couldn’t be further from the truth. We spent the first two years just trying to find our place, get our footing, and figure out what we were supposed to be doing in light of the heaps of projects available to us. As we acclimated, we began to lean in to the amazing group of missionaries with whom we serve.
In the midst of all of this, I’ve also become aware of my special connection with my parents. When I got married, I was already 33 years old. My sister had died 8 years earlier, and honestly, love took me by surprise. Justin was God’s gift to me to prove to me that He still loved me after I walked away from my faith when Amber died. While she was sick in 1998 and 1999, I had friends, but my parents and our family were the ones who were there. We took that unplanned journey together, and, as difficult a time as that was, when I look back, I remember the faces of the people. My parents were right in the center of that time. They were our family’s rock of faith, even as mine waned. We all spent hours at her bedside, we remember the custodian who sang to her on Easter, we remember the time I almost caught the 11th floor of Vanderbilt hospital on fire when I warmed up an Arby’s roast beef in the microwave. We were the ones who celebrated when she finished her first round of chemo and the ones who cried when the leukemia returned. Those 11 months are forever etched in our collective memory and it binds us together.
I’ve often wondered, over these past three years, why it’s been so difficult for me to be away from home and family. I’ve chalked it up to just being homesick, or feeling responsibility for my parents since I’m their only living child. And I’m sure that’s part of it. But God has revealed that it is more than that. It’s the power of shared experience. It’s that they are part of an ever-declining circle of people who were there, who know the story inside out, and who understand, at least in part, what I mean when I say, “Amber.”
And it's ok. I finally believe that. For awhile, I felt like a bad missionary because I was so torn between the "calling" and home and those connections with family. I thought it had to be one or the other, that I couldn't really follow God's call to serve here if I was still longing for the desire for the familiar. Now I know it can be, and often is, both.
I’m reminded of the disciples, all gathered in the Upper Room after Jesus’ crucifixion. They had been through so much together, and now, it seemed that the story was done. But instead of just going their separate ways, they stayed together. They were afraid and confused, but what made the most sense to them was to be in community. Then, Jesus appears and speaks Peace to them. They were able to go out as witnesses to all they had seen and heard. But they retained their connection to each other. They never forgot their identity as a disciple of Christ and all that it meant.
I’m grateful for the stories of hardship that bind me to my family and communities in which I’ve served. They are powerful, hard, messy, joyful, beautiful, and redemptive stories. They are the experiences where I remember seeing the work of Christ most vividly. And they keep me connected to the people and events that have shaped me.
Thanks be to God.