A hospice chaplain/grief counselor and a pastor offer a first-hand and realistic depiction of death and dying
A Q & A with the Rev. Matt Holmes, who draws from two decades as a hospice chaplain, grief counselor, nurses’ aide, and emergency medical technician, and invites us to peer into the often-occulted dimensions of life’s endings. From bedsores to isolation to neglect to deep, desperate love, modern death’s characteristics are navigated here with insight, honesty, depth, and clarity. Following the sense of horror and humor evoked in each narrative are theopoetic and theological reflections from the Rev. Thomas R. Gaulke, PhD.
Q. You write about a subject most people shy (or run away) from and take us to the margins of death and dying. What inspired you? Why now? Why do we all need to explore modern death?
MATT: The stories in this book are inspired simply by years of watching people near the end of their life. Being with people at this time is an honor and a blessing but it can also be horrific and sad. Part of telling these stories is to try lay bare what is often hidden.
I started in hospice well over ten years ago, back then it felt as much like a movement as it did a medical service. We were facilitating a better, more human way of death. Since then, hospice has become another part of the larger health care system. While this is good in that more people have access to the service, it also brings along the issues that any large and expensive program does. It invites “modern death in” as such the movement aspect seems to have subsided. That said, the “death positive” movement and growing death studies field point out a growing interest and willingness to get involved in death and dying. Hopefully this book can speak to this new and growing engagement in end of life.
TOM: So, I wrote the book’s “interludes.” Though they differ in style, each was written as both a reflection on something from the story that preceded it and as something of a monument to the person in that story–and sometimes, even more, it was a monument to the people (mostly former parishioners) that I was reminded of while reading Matt’s story. Some of them are still alive. But you know: It’s never too early to remember folks you love.
I don’t know if it is immediately apparent, but I hope, in playing with theologies (and what is perhaps commonly seen as “funeral language”) that readers of all stripes might see something of the beauty with which various theological traditions wrap death and honor life’s ends, as well as (and perhaps this is less obvious) the real sense of horror and uncertainty that any speaker of comfort (such as an uncle, a friend, a priest) masks amid these ends. Hope in such times (despite the certainty with which it is sometimes stated) is, in the end, more accurately not an object of human knowledge or certainty, but rather an expression of desire tied to longing, terror, anxiety, and the like.
MATT: “Modern death” is a technical term in the book. Like the modern philosophy it was born from, there is a belief that technology and rationality will eventually overcome death in some way, either by extending life indefinitely or through the medical treatment of dying people. While this can be helpful it has also shifted focus from the meaningful aspects of dying to the mechanical. It has also led to this separating out the sick and the dying from the rest of society, via nursing homes, assisted living, and hospitals. Death is bracketed off from society and dealt with professionally. In its wake “modern death” has left profound loneliness, feelings of meaningless, and often neglect and mistreatment of the dying. This book lays that process bare and may force us to deal with it.
TOM: I think Matt and I have both always been struck by the imperative contained in the word “responsibility.” That imperative is, said simply: respond. You don’t have to be theological to believe in this word. Matt knows this word well, especially as a first responder. Whatever the outcome might be in the end, the word means something when the call comes. Someone is in need and you’ve got to go. One theme you’ll see us return to again and again in the book is that of covering up, hiding away, concealing, and the like. We, as a society and in the US, have invented countless methods of hiding, skewing, and disguising reality, including social stigmatization and ideological frameworks that skew our perceptions of one another, as well as prison and nursing home walls that hide us away completely. Not only do these barriers keep us from perceiving one another, but they also keep us from responding in a meaningful way. Said differently, by sequestering whole populations of people who suffer, we can lie to ourselves and go about our days believing the myth that our societal systems are kind, good, and working. I hope that, in seeing the truth of this thing, people might begin to see the truth of the whole thing–and that they, we, you, and I might respond responsibly. That said, we do not “preach” about that in the book. I think we both believe that perceiving and feeling horror is the first step to desiring something better–not moralizing or preaching or the like.
Q. You illustrate a lot of your points with stories of patients at the end of life, and they're not - some of them are uplifting stories, as you say, “shot through with life and love, with humor and strength,” but some of them are not easy to read. Why is it important to share these honest glimpses of what can happen to any of us, or our loved ones in hospitals, nursing homes, our living rooms or other dying rooms?
MATT: It's important to share these stories honestly because they are so often occulted from our view. Tucked away at the edges, or the “end of the world.” Nursing homes that look like Victorian mansions often harbor horrible pain behind their walls, but we only see the faux columns and manicured lawns out front. This book should give not just a glimpse but an honest view behind those walls.
The other reason it’s important is many of us have experienced similar stories. We have seen a loved one's bed sores and visited them in a nursing facility. But we are not aware of how common this experience is. The horrible ordinariness of “modern death.”
TOM: I’d especially like to echo that last point of Matt’s. We all know the power of the slogan, “You are not alone.” Already, we’ve seen that some of the deepest gratitude we’ve received since publishing has been in responses from people who have experienced a death or two like these and who could see their loved ones and themselves in these stories.
Q. What do we mean and what are we really saying when we say to one another, “She suffered enough?”
MATT: Tom and I both come from liturgical church backgrounds. We go through actions that carry sacred meanings. It’s similar but somewhat twisted when we say someone has “suffered enough.” It’s as though we have to act out these painful last days before we are allowed rest. We extend life to a point where the service has been completed to our unchosen and unconscious standards before a person can die. While the statement “she has suffered enough” is meant to bring a comfort to the person saying it, it also in some way dismisses that suffering as something required by the dying for them to deserve the peace that death may provide. There are better and more meaningful liturgies to live out at the end of life.
TOM: Agreed. I think it was Victor Turner who spoke of the “betwixt and between,” and specifically of the liminal spaces in our lives and in the lives of our communities that we mark as sacred through liturgical action: drama, symbols, words, etc. Some of the most famous, perhaps, are the rites from various traditions of walking across a bed of hot coals to mark a transition (to adulthood, etc.). We might also think of baptism, of walking down an aisle, of crossing a graduation stage, of bowing or passing through the tori at a Shinto shrine, and the like. Each of these sacred actions gestures toward a different everyday reality just as each act out the pain (or effort, or studying, or simple act of mindfulness) that it took to pass from one world to another. Indeed, life is marked by suffering, and it is good to acknowledge this in a liturgical short form. I think the mistake we make near the end is that we make it the bed of coals. We require of the dying some suffering to “prove” they are really all done. This is why DNR bracelets can sometimes be controversial with the children of the dying: “Mom, are you saying you’re not even going to try? It’s just a tube!” and so on. We forget the joys and struggles of life were fire enough and we need not intensify or prolong undesired pain at the end.
Q. Where did the title, Everyday Armageddons," come from?
TOM: This question relates a little to the last. In short, this theologian that we both love (who was also our teacher in seminary), Vítor Westhelle, wrote a little book called Eschatology and Space. My paraphrase of his more complex question is this: What if, when Jesus said, “God’s Reign is near,” he meant in nearby in space more than close in time? If we think of eschatology (the study of “ends”) in light of his question, we easily see that the questions of eschatology become questions of ends, of crossings, and the like. There is a term in Westhelle’s theology that comes from a Greek word, chōra, which means to lie open. Choratic space, Westhelle says, is that space between places, the threshold. That space is apocalyptic, meaning mysterious, and also meaning: an uncertain space that for us might be a site of sure and certain annihilation, as well as a site of salvation. We do not know. As such, it is a space of anticipatory emotions: horror, hope, laughter, and the like (the recurring themes in this book). The process we call dying is one of the choratic spaces. It’s all around us. We hide it away. An apocalypse next door. The Reign of God breaking in. Armageddons every day, everyday Armageddons. And so on.
Q. How did you select artwork? Describe the journey the images create?
Matt: The idea of pairing the book with interesting and challenging images was there from the very start of the project. At first, I wanted to find pre-modern images of death as a way of comparison to the modern system, and we do have a few medieval pieces of art in there, but eventually, we found these beautiful watercolors from largely Victorian medical texts. It was interesting to see what can be jarring and grotesque images painted beautifully. We felt these would be powerful when attached to the interludes and stories. It was also a lot of fun looking through the images at the coffee shop/tavern we worked in, though it might have been off-putting to the other patrons.
TOM: Agreed. It was quite a fun project pouring through and discussing these images in public.
Q. There’s the chapter in the book about Elizabeth and I was especially moved by her calling out “mommy.” Can you share more about that story?
MATT: This story is about the encounters that change us. Elizabeth’s calling out of “mommy” is not something limited to a single person, but it is a call we have all made and as such we can all relate to. Sometimes despite “modern death’s” best efforts to hide away the dying something breaks through. How that happens may be unique to the individual, but Elizabeth’s story is an attempt to break through.
Q. Describe the lessons from Jeffrey and Kim’s stories.
MATT: The Jeffery story is an attempt to see the process of “modern death” all the way through. From institutionalization to the removal of the body. That wide-lens view was meant to capture the absurdity and the struggle of it all. If I can pick one takeaway from the Kim story it is how even when we see these things, the true horrors, we often still hide them, sometimes unconsciously, from ourselves. Be it in professionalization as seen in the nurse who sees Kim’s bedsore simply as a problem to be overcome, or in the repressing seen in Kim’s sister who can’t bear to communicate the true scope of what she saw.
Q. In the final chapter you describe the perspective of someone who is dying and describing his journey through dying and cremation. Tell us more of the learnings from Walt’s story?
MATT: On one level this story is meant to point out some of the issues with the modern funeral industry. More than that it is an illustration of what we see as sacred in “modern death.” How a human body can become a problem to be dealt with rather than something holy to be cared for.
Q. The foreword brings up the subject of assisted suicide. What do these stories surface to bring up that discussion?
MATT: I think it is natural and good for people to look into the subject of medically assisted dying in light of the book. It is hardly a panacea for the problem, which extends deep into how we see life around us, but it is a way of addressing it. One among other ways, known and not dreamed up yet, which need to be discussed in our society.
TOM: Agreed.
Q. What advice do you have for all of us to be less uneasy, to be less queasy and why it matters that we explore modern dying now?
MATT: When you have someone in your life in need of care, give it, to the extent that you can. Be involved and reflect on that involvement. For all of human history besides the last few decades it was the loved ones who did the bulk of the caregiving. It is hard, difficult work, but it is also part of what it is to be a person. Short of getting a job in health care that would be my hope.
TOM: Not much to add here. Beyond love of neighbor, there’s also an important question of self-interest. Is this how I want to die/live? Is this the kind of life (toward death) that I want my children to have? My experience in churches is that when people become homebound or locked up, we have a tradition–to visit, to bring communion, to share stories and gossip, songs from YouTube or someone’s guitar, and prayer. Whatever else, too. This is not unique to faith communities, I don’t think, but faith communities are among the communities that, just by virtue of walking through the door a few times, you become a “candidate” for such community care. In a society that tends toward isolation, individualism, and retreat into nuclear family formations, I’ve seen communities become, well, communities, for those without (some might say families). Whatever the source, where possible, I’d wish this for everyone.
Q. As you mention, this book is an opening to our endings and an invitation to search for whatever meaning and whatever of God might lie therein. Are there any of the stories in the book that really illustrate that?
MATT: I think the Worm King story, which I didn’t write specifically for this book but made sense in it, is a story that opens up the depth of meaning that is out there and inside each of us.
TOM: St. Francis of Assisi, in his Canticle to the Sun and elsewhere, has been noted for giving praise to God for “Our Sister, Death.” I think Cláudio may have mentioned the song in his introduction. I can’t remember. But an author he and I both love, Rubem Alves, spent a good part of a little book called, what is Religion? reflection on the topic of how religion engages the question of how can we engage Death as Sister? He concludes that book with the following words. “And the reader, perplexed, in search of a final certainty asks, ‘But does God exist? Does life have a meaning? Does the universe have a face? Is death my sister?’ to which the religious soul could only reply: ‘I do not know. But I ardently desire that it be true. And I make the leap unreservedly. For it is more beautiful to risk on the side of hope than to have certainty on the side of a cold and senseless universe.” I really love this sense of the “religious soul.” And, at least in part, this is the search for the “whatever of God” that I hope is captured in the interludes—as well as in the narratives.
Q. How did writing the book help each of you individually?
MATT: I found working with Tom incredibly helpful. I came into this project with what I thought were crystallin ideas on the subject, but in many places, Tom opened my eyes to new ways of thinking, and deep aspects touched on that went even beyond end of life. This has been incredibly helpful to me not just in writing my part of this book but also in my work and life in general.
TOM: A lot bubbled up in me throughout this project, but one very meaningful and unexpected byproduct was that it allowed me to more fully grieve those whom I’d lost while pastoring. There, I presided and was a “presence.” Here, in the writing and in the engaging of Matt’s work, I found space also to cry.
Q. What do you think would be the ideal death?
MATT: I’m not sure but as much as possible I want to die with my eyes open. To my wife, it was important to try and have our kids without medication. To experience childbirth as it has been experienced since before modern medicine was even a thought. While I admittedly had a hard time understanding this at the time I have learned to see what was motivating her in the light of “modern death.” I want to be awake for the process. That said, ask me when it’s my time I might have something different to say.
TOM: Natural & in community.
Q. What do you hope will be the reader’s takeaway from your book?
MATT: I hope they are disturbed but perhaps hopeful as well. I want readers to think about the fact “modern death” is most likely not only in their future, but it is their future and the future of their kids. Perhaps the readers smarter and better than me can help do something about that.
TOM: Agreed.
Q. What were the surprises or learnings you experienced writing this book? Or feedback from readers?
MATT: One of the things I have been glad for is that many people have noticed the absurdity in the text. The major question that we have gotten has been, what is to be done? To that, we don’t provide an answer.
TOM: I think one reaction we both had upon reading Cláudio’s introduction was, “Awesome. He gets it.” Writing a thing like this, you hope that it is “get-able,” and it has been, which is reassuring.
Q. How do you hope readers will put these learnings into action in their own lives or the work they may be doing caring for the dying?
MATT: I’m as interested in that as anyone. But I think the first place is to choose to look deeper at this thing “modern death” that is around every corner in our neighborhoods and our lives.
TOM: The family unit alone is not big enough (or adequate) for many, many, folks to be ensured not just “care” but community near the ends. What communities are we building in our quite isolated society so that people, in general, and especially dying, neither need to come in nor leave this world, alone?
Q. What is next for both of you?
MATT: I continue to write, poorly edited, absurdist fiction you can read (when I remember to post it) on my Substack the Pataphysical Pen the Pataphysical Pen | Matt Holmes | Substack. I don’t want to speak for Tom, but I’d love to work on something else with him.
TOM: I have a few projects in formation, nothing named yet. One of them is an idea I have for an agnostic liturgy project. Matt and I also hope to present at Wild Goose Festival this summer on Everyday Armageddons, so, you know: If you are in town come see us. You can find my links and so on at www.TomGaulke.com.
ABOUT THE AUTHORS
Rev. Matt Holmes graduated from The Lutheran School of Theology at Chicago in 2010. After graduating, Matt worked as a chaplain, pastor and grief support specialist in several different settings. He currently provides bereavement support for Advocate Hospice. Matt also serves as a firefighter/EMT and an adjunct instructor at Triton College. He lives in the western suburbs of Chicago with his wife and two kids. He is the author of Breath: 52 Reflections for Those Who Care for the Dying (Avenida Books, 2017).
Rev. Thomas R. Gaulke, Ph.D., is a belief-fluid Lutheran pastor. From 2009-2023, he was called to be a pastor in the Bridgeport and South Loop neighborhoods of Chicago as well as in the nearby Town of Cicero. Working in community, he co-founded and collaborated with neighborhood groups across Chicagoland, working to shut down dangerous polluters and provide public transit. Occasionally co-teaching Public Church at the Lutheran School of Theology at Chicago, Tom recently followed his incredible spouse to Milwaukee where she was called to serve in the realm of public health. Tom is currently writing and enjoying fatherhood. He serves as an on-call chaplain for the Black String Triage Ensemble and is the Interim Campus Pastor to Carthage College in Kenosha, Wisconsin.
