I needed to finish this book before my entire family died.
While writing, rewriting, and then editing what you are now reading, my younger sister, Julie Troyer, was diagnosed in late July 2017 with an aggressive glioblastoma multiforme brain cancer and underwent emergency surgery to reduce the tumor’s size. She then received multiple radiation and chemo treatments for the next year before dying on July 29, 2018, in Milan, Italy, where she lived with her family and worked as a schoolteacher. She is survived by her husband and two young children.
In addition to my sister’s death, my father’s younger brother Keith died from multiple terminal conditions on June 15, 2018; the same night I received an Alumni Achievement Award from the University of Minnesota for my academic work in the University of Bath’s Centre for Death and Society on end-of-life issues. Uncle Keith died, by chance, in a University of Minnesota Hospital room two blocks from the awards ceremony. I attended the ceremony with my parents, and we only learned that Keith had died after we left campus and drove thirty-five minutes home to Wisconsin. Following a quick turnaround, we drove back to the hospital and said goodbye.
My father, Ron Troyer, survived a series of heart attacks that started in late 2015 and subsequently required inserting twelve stents into his coronary arteries. As I type these words in early 2019, my parents are preparing to meet with his cardiologist to discuss scheduling open heart surgery, since everyone agrees the less-invasive route is no longer viable. My mother, Jean Troyer, is in relatively good health (thankfully) but does manage some severe arthritis and other age-related conditions.
As for me—I should really lose some weight given all the cancer and heart disease raging through my genes (I’m working on it). But given all these recent events, the past few years have fundamentally changed how I understand what living and dying mean for my family.
At this point I need to explain that not only am I director of the Centre for Death and Society at the University of Bath, one of the world’s only research centers dedicated to the interdisciplinary study of death, dying, and the dead body, but that my father is also a retired American funeral director. When I say my entire life revolves around death, it is not hyperbole. Death is all I have ever known, and this book is a hybrid response to the death, dying, and dead body constellation that inhabits my life. It started as a mostly academic(ish) text but morphed with time into a book that asks readers to think about death, dying, and dead bodies in radically different ways. This book is also now unintentionally part memoir. I do not consider myself a memoirist, and I do not ever plan to write a memoir, but my sister’s death interjected itself into these pages in ways I cannot ignore. I firmly believe that fighting death is a bad idea. Death wins. Death always wins.
My supposed familiarity with death and dying is why I began this book with my sister; despite my lived experience and academic credentials on human mortality, I was completely unprepared for her untimely death at the age of forty-three.
But I was not unprepared in that way many people are wholly unprepared for a person to die. There was an element of that emotion, but I was raised to understand that any person, especially the people we know and love, unexpectedly die all the time. Death was totally normalized for me in this way. My self-described unpreparedness arrived when at almost every stage of Julie’s one year living with brain cancer I felt compelled to intervene and ask about hospice care, to make sure that my sister understood she was dying. But for reasons I do not fully understand I did not say anything until the very end.
That is, I finally said something on the night of July 13, 2018, when I was with my sister in Italy and she asked me what was happening, so I told her she was dying. I held her hand and did what none of her medical team had done and said what the counselors kept telling my brother-in-law not to say—I told my kid sister that she was never going home to Wisconsin, that she was going to die in Italy, and that we would do everything we could to make her end of life comfortable. Julie died sixteen days later.
What I remember most about this entire experience is my sister saying three things: (1) thank you for telling me, (2) I know I’m dying (we did grow up the same way, after all), and (3) I am glad you are the one who told me because I would do the same for you.
This was one of the last conversations I ever had with my sister.
Julie’s overall health was rapidly declining by this time. She had already lost vision in her right eye because of the tumor, the left eye was on its way out, she was bedbound because of severe balance problems also caused by the tumor, and her hearing was failing. On the upside, she was not in much physical pain because a local hospice recently started providing her with palliative drugs and outpatient medical care, complete with on-call doctors and nurses. But even after the local hospice got involved, no one said anything about dying. It was a matter of days after our conversation that an ambulance transported my sister to the same hospice’s comprehensive inpatient facility for comfort care. Julie requested that she not die at home, contrary to the conventional wisdom on where people prefer to die, so my brother-in-law dutifully made the arrangements.
Two nights after I told my sister that she was dying, I asked if she wanted to talk on Skype with Mom and Dad in Wisconsin. She said yes, so I stretched out next to her on the bed and held up my laptop so we could all see each other. The conversation was short, mostly because it was difficult for my sister to maintain even medium-length, focused conversations by this point, but we did talk about how much we loved each other and how Julie understood she was dying and how unfair it all felt.
A common narrative around terminal illness often describes dying people walking peacefully toward death, exhibiting stoic acceptance. My sister was angry about dying. She fully understood and accepted that death was coming, there was no supposed death denial in her final weeks, but her exact quote to my parents was “Dying sucks. It really sucks.” Julie just wanted a longer life. We did too.
Neither my parents nor I could know it at the time, but this was the last conversation all four of us ever had together, even if it was on my computer screen.
My sister and I talked a lot about this book—about how long it took to get published after a series of disasters with one publisher and how MIT Press and my editor, Matthew Browne, came to my rescue. About how she called me the Overlord of Death. For years my father joked that I needed to finish the book soon, ideally before he died, so that he could actually read it. We all laughed until he had his first heart attack, at which point I realized finishing the book was no joke. Then my sister got sick and died before anyone expected.
I knew in April 2018 that Julie would never see this book. I was in Italy with my partner and parents for Julie’s birthday, and it was abundantly clear even then that the cancer and its associated treatments were aggressively dismantling my sister. It was also during this trip that I started a series of prose pieces called Watching My Sister Die, some of which are included in this book. Looking back at April 2018, I made a mistake by not saying anything about end-of-life care and dying. But it was also Julie’s birthday party, and my partner always reminds me that most of her friends were not ready to hear the word dying. My partner is absolutely correct, and I understand all this, but I still struggle with balancing what I professionally recognized versus what I personally said.
The whole situation felt bleakly ironic, since being a funeral director’s kid meant death was our familiar friend. My sister and I spent hours and hours of our youth in the different funeral homes Dad worked in. We never actually lived in a funeral home, much to the disappointment of Six Feet Under fans worldwide, but we did grow up watching our father moving RIP floral arrangements around, or vacuuming a visitation chapel’s carpet, and frequently disappearing on Christmas mornings because someone had died the night before. Normal. This was all totally normal for us. Julie and I both understood that our childhood was different than most, but it was all we ever knew. Indeed, our parents had made a point of not hiding anything about death, funerals, or dead bodies when we were kids. One of my earliest childhood funeral home memories (these are a thing—ask anyone who grew up around funeral homes) is touching the dead hand of an older woman before her visitation started. I remember her skin’s distinct coolness as she lay in the casket, and asking my parents why the hand felt cold. They both explained that the woman was dead, and that a person’s body temperature changed after dying. Her hand was completely normal, they said. Dead bodies were completely normal, they said. And this was when I learned, at a very early age, that human corpses were not scary—they were just dead and cool to the touch. I also remember the blue polyester pantsuit that the woman wore, mostly because this all happened in the mid-1970s.
When my sister took her final turn and died, I was in Bristol, England (where I live), preparing to board a 4:55 p.m. flight for Italy. This was on a Sunday. A mutual college friend, already at the hospice, called me on my phone while I sat waiting to board the plane and told me that Julie had died holding her husband’s hand. The original plan had involved my flying to Italy later that week, but after some calls from my sister’s husband and her friends over the weekend, we all agreed that I should get to Milan as soon as possible. My niece and nephew had said goodbye the day before. The same mutual friend texted me several times while I waited in the airport to say that Julie’s breathing had become more labored, so I was not surprised when the final call came in. I made sure during all the predeath texting that our friend knew Julie did not want any resuscitation, should the hospice decide to take measures keeping her alive. Everyone around Julie agreed on this point, and it would be strange to see a hospice make such a move, but my brotherly protectiveness took hold and I needed to make sure that my sister remained dead if and when she died. The last thing I wanted was for the hospice to resuscitate my sister because they knew I was on the way. Communicating all this over text messages was surreal, but I also know it is how we humans die now. During that final phone call I kept repeating, Do not move her body. Keep her body there. I want to see Julie when I get to the hospice, and our friend said not to worry.
I called my parents. I called my partner, who was in the middle of Norway working as a tour guide with a group, so she could not join me in Italy. I told everyone that our friend would make sure the hospice kept Julie’s body on-site so that I could see her when I finally arrived. I asked a young married couple with two children, who overheard my conversations and stared at me with extremely concerned and slightly shocked eyes, if they would stall for time before getting on the plane so that I could get my things together. It’s okay, I assured the young mother. It’s okay. I’m okay. I’m the Overlord of Death. Then I walked onto the tarmac and boarded the plane. Gate 11. Bristol Airport. If anyone wants to know exactly where I learned my sister died, I still have the boarding pass.
On that Sunday afternoon I could only book a one-way flight that took me from Bristol to Amsterdam and then Milan, so by the time I finally arrived at the hospice, my sister had been dead for several hours. The nursing staff had moved Julie from her room down to the hospice’s Mortuaria level. I know this because I saw Mortuaria on the elevator signs as I descended to the basement, making a mental note along the way about experiencing the world’s weirdest version of Dante’s Inferno. Two extremely compassionate nurses showed me to the private room and told me in halting English to take as much time as I needed. I used my restaurant-level Italian to thank them.
Stainless steel. That is the first thing I noticed when I walked into the room. My dead sister’s body laid out on a stainless steel table, next to a stainless steel counter complete with a sink and retractable hose. She still wore her hospice gown, and a shroud covered her lower torso. In the room’s floor, at the foot of the table, sat a drain. It took me two seconds, using my advanced-degree critical thinking skills, coupled with growing up in funeral homes, to realize I was looking at my dead sister in the hospice’s prep room.
The prep room is where a funeral director “prepares” a body for a funeral.
What I am about to say may not make sense, but I took immense comfort seeing my sister this way. In that room. On that stainless steel. In a mortuary.
This was our youth. We grew up in these rooms.
I was far more at ease talking with Julie in that familiar stainless steel room, holding her hand, hugging her, and kissing her goodbye, than if we had been in her hospice room. I spent around forty-five minutes with my sister, reading her what I had written on the different airplanes and making sure she knew that I would look after our parents.
It took me a long time to actually leave. I wanted nothing more than to sit for days and hold my dead sister’s hand and think about all the prep rooms we saw as children.
Late that night, as I left the hospice with everyone, I noticed that the lampposts outside the building all had advertisements for local funeral homes, or funebri in Italian. Knowing “funeral home” or its equivalent in multiple languages is one of my many skills. And not small adverts, I mean large banners that were impossible to miss no matter how hard you tried. They reminded me of banners announcing Fourth of July parades or gay pride festivals, but designed by Goth kids who went into marketing. I asked my brother-in-law if this was normal in Italy, because, well, I did not think you would see banners advertising funeral homes outside US or UK hospices. He said it was normal(ish) and just proved that Italian businesses knew where to find their customers. Then we started laughing because we both knew that Julie would think the funeral home advertisements were funny and that I must tell Mom and Dad about them. Rest assured, I did. They eventually took photos of the banners.
I slept that night at my sister’s house in the same bed where I had told her she was dying. Two days later, on July 31, I went with my brother-in-law to central Milan to file all the necessary death notification paperwork. It was a tough day, for all the obvious reasons, but especially difficult for him.
July 31 is his birthday.
August 1 was the funeral.
Julie’s funeral service took place in an exceptionally stylish and modern Italian funeral home. A kind of funeral home very different than the midwestern American ones we knew as kids, but a funeral home all the same. She always appreciated marble floors and modernist architecture; the Jesus stuff (as we both called it) not so much, but, you know, this was Italy. Julie and I routinely joked about spotting funeral homes of any kind in any city before anyone else. “That’s a funeral home,” I would say or she would say, well before any visible signage appeared. Our friends would then look at us with slightly terrified bemusement, as if we saw Death silently creeping up behind them in a New Yorker cartoon. We just intuitively recognized these places.
My brother-in-law organized the funeral within hours of my sister’s death, contacting the funeral home and meeting with someone while I made my way to Italy. Funeral planning is emotionally difficult no matter the circumstances, but I could tell that my brother-in-law needed/wanted to make these arrangements on his own out of love and devotion. Besides, had I gone with him to meet the funeral director, I would probably have spent more time asking questions about how and why Italian funeral homes did certain things than actually focused on my sister. He also made sure that the funeral home staff knew his deceased wife’s father was a retired American funeral director, and I got the sense that the unspoken code many American funeral directors follow when helping a colleague’s family also happened in Italy.
My parents flew in that day from Wisconsin, and we collected them at the airport on the way to the funeral. By chance, they had already planned to arrive in Milan on August 1 and had booked their tickets months in advance. When we gathered in late April for Julie’s birthday, we hoped that she might live long enough for one last Troyer family visit come August; instead the four of us said our final goodbyes at the funeral home.
That last goodbye is when my familiarity with death, dying, dead bodies, funerals, funeral homes, funeral directors, grief and bereavement, the broad academic literature on when a loved one dies, and watching parents weep over their dead child became profoundly conflicted. I knew exactly what to do with my parents when we arrived at the funeral home and my death professional mode immediately kicked in. At the same time I remember thinking that this experience of death was never supposed to happen—that my younger sister was never supposed to die first and that our parents were never supposed to see Julie dead. Julie and I occasionally talked about who would die first, Mom or Dad. But we never seriously discussed what would happen if either one of us died first. I say seriously because I bought a motorcycle in my early thirties during a pre-midlife-crisis moment, which meant my sister told me in no uncertain terms that she would kill me if I died riding it. I thought about that motorcycle a lot after Julie died and how unfair it seemed that despite my best efforts I managed to live, while she died from brain cancer. Connecting the two is not wholly rational, but it is often the way a person thinks while holding a dead sibling’s hand.
Mom and Dad spent a long time with Julie in the private visitation room where mourners can see the deceased before the actual funeral. Then it was time to move Julie’s body, put her in the European-style tapered-end coffin selected by her husband, move the coffin to the funeral chapel for the service, and close the coffin’s lid.
I spent time with my sister in the visitation room the day before (after filing the death notification paperwork), and she looked good, which was a relief because I did not want to call my parents and tell them that the funeral home handling their dead daughter botched the job. It seems crass, I know, to describe “botched jobs,” but this was my immediate concern. If you grow up around funeral homes, then you know what poorly done body prep looks like. Julie and I certainly knew.
Curious death world readers will surely wonder whether my sister was embalmed; she was not. Embalming is not widely done by this specific funeral home (or across Italy, really), so she was placed on an electric cold pad that slowed her body’s decomposition. The funeral home dressed her in the clothes provided by her husband, applied cosmetics, and styled her hair. Again, she looked good. In addition to funeral directing, my father also taught mortuary science for many years—specifically, funeral cosmetology—so trust me when I say that Mom, Dad, and I spent a long time scrutinizing how the funeral home prepared my sister for public viewing—in between crying and occasionally chuckling at the enormous Jesus crucifix above Julie’s head, which she would never want.
Then the funeral happened. The neo-rococo-style chapel quickly filled to capacity, so people spilled out into the funeral home’s foyer and quietly listened. The floral arrangements contained many sunflowers and gerbera daisies, my sister’s favorites. Musician friends played music. And everyone told funny stories about Julie in both English and Italian, which many of the Italians found quite different from their usual, more somber funeral practices but very much liked. Julie was cremated the next day, and her urn now sits on a family bookshelf in Italy so that her children can say hello to Mama.
I argued with myself for a long time over how to describe my sister’s funeral—in that way writers sit at a keyboard and talk to themselves, not realizing other people can hear them, saying, “Make sure and describe your dead sister’s body but don’t make it weird.” A key reason for writing this book, and my entire career writ large, is to understand all the invisible technologies humans use to make modern death and dying visible. Defined. Knowable. Experienced. I could go on for pages, and let’s be real—I do go on for pages. So, for example, when I saw the electric cold pad keeping my sister’s body from decomposing, I automatically recalled the entire history of noninvasive preservation technologies used in funerals since the nineteenth century. But when it came to Julie’s funeral, all I really wanted to say is that it happened. She lived. She died. Everyone laughed and cried. People instinctively posted things on social media. Language seemed impossible. Words were not applicable. And for years I read academic articles and books that quoted grieving people saying what I was now feeling, which meant I unintentionally prepared myself for Julie’s death but also meant I simply wanted to say I get it now. I think I get it now.
Eventually, this preface needed a terrible twist (more than just my sister dying), and disaster finally struck when I left the journal documenting everything about Julie’s death and the last ten years of my life on the airplane back to England. I put the journal in the seat pocket after writing about Julie’s funeral and then promptly forgot to collect it when the plane landed at Gatwick Airport. Twenty minutes into the train ride back to Bristol I reached into my backpack to retrieve the journal and jarringly realized my mistake, so I returned to Gatwick and begged the airline for access to the plane. That was never going to happen, but I did get a phone number to call and a website at which to register my lost item. The office that returns lost items was already closed for the day, so I left one of those voicemail messages that go on for so long that the system eventually cuts you off. I then called back and left a second, equally long message about my sister and her brain cancer and her death and how this journal meant more than anything to me and that I was a death studies academic (no idea why that was important to say, but I did) and that if you opened it up, you would find a series of poems called Watching My Sister Die, so PLEASE PLEASE PLEASE get the journal back to me. Thank you. Sorry this message is so long.
That was all I could do at 9:00 on a Monday night, so I got back on the train and headed home, filled with such self-directed rage that I felt numb. This was when Julie’s death really hit me, when I sat by myself on the train unable to write down what I was feeling because my journal was in lockup at Gatwick Airport. This is also when I started talking to Julie, asking her to help me get the journal back. And if anyone ever asks—it is 100% normal to talk to dead people. I am not joking. Try it. The dead are exceptionally good listeners.
The next day after some more frantic phone calls and the serious shedding of tears, a lovely Scottish woman (whose name I cannot remember) calmed me down over the phone and personally made sure that my journal made it back to me. I rarely let the journal out of my sight now, and I am looking at it as I type these words. But for writing, I do not know how I would ever process my sister’s death. I would find ways, I am sure, but like Bartleby, I would prefer not to.
At this point in the story, all the days and emotions begin to blur together. We had another standing-room-only memorial service a month later in Wisconsin, for which my father manually scanned over 150 photos documenting Julie’s life and saved said photos in six different “Memories of Julie” desktop folders that I then turned into individual PowerPoint presentations and clicked through during the service. I must admit that using PowerPoint during my sister’s memorial service caused me mixed emotions, but it did the job, and contemporary presentation software definitely has its historical place in twenty-first-century memorialization technology. It also felt good to be doing something useful during the service. My brother-in-law flew in from Italy, and my partner was able to join us this time. A friend from high school who is now a professional opera singer sang “Unforgettable”—a song he also sang with my sister for a high school choral concert many years ago. Other friends delivered eulogies. Another friend volunteered to do the floral arrangements. Two friends who could not make it that day recorded music, and we played the recording over a photomontage. We held the memorial service in a local hotel ballroom, and Wisconsin being Wisconsin, this meant an open bar after everything finished. My sister always liked an open bar.
I can wholeheartedly confirm that if the Troyer family does anything well, it is planning and running a funeral. This may or may not come as a surprise. My Mom oversaw the front of house greeters and overall hospitality, including, but not limited to, preparing cupcakes for several hundred people; I ran the audiovisual, and my Dad stage-managed the entire affair. But working together on the memorial service also made me sad because I do not know what I will do without my sister when my parents die. I just really want my sister at those funerals.
Dammit, Julie.
I always thought a preface to this book would chronicle the ways growing up around funeral homes made me see the world differently. Indeed, the initial preface opened with a mildly amusing anecdote about my father explaining how dead bodies are not actually cold—they are just room temperature. This really happened. I’m not making it up. But I only recently realized that how I grew up did something profoundly more important: it prepared me for the moment I became an older brother holding his terminally ill sister’s hand and saying, Julie—you’re dying.
And now I am an only child looking after his aging parents.
Like I said, I needed to finish this book before my entire family died.
On November 29, 2019, my father, Ron Troyer, collapsed in the Minneapolis-St. Paul International Airport from what we now know was cardiac arrest. He and my mom had just returned that afternoon from a cruise in the Bahamas and were headed to the car rental counter. True to dramatic form, my dad collapsed at the top of a long escalator and fell backwards onto my mom, who managed to keep him from sliding all the way down the steps. My father is a big and tall man, so stopping his descent was no minor feat.
Members of the general public started CPR before an entire brigade of EMTs, fire fighters, and police officers arrived on the scene and restarted my dad’s heart. The paramedics then took my father by ambulance to the St. Paul, Minnesota, intensive care unit that began treating him for heart problems in 2015. Many thanks to the young woman who held my mother’s hand during the whole resuscitation ordeal. The empathy of strangers is most often apparent in these kinds of crises.
As I type this on December 3, 2019, my father is still in the ICU, resting comfortably, and his vital signs are good. But he has never regained consciousness, and I do not think he will. His brain went without enough oxygen for too long after he collapsed. I will soon fly to the United States to help my mom follow my father’s end-of-life care wishes and medical directives. I am grateful that we discussed all these possibilities a few years ago and my parents made their wishes known in writing. My father’s Living Will is already out and sitting underneath my black journal.
Two things:
So, my dad isn’t dead. Not yet. But I have a strong hunch it’s just my mom and me now. And seeing my father suddenly fall into a comatose state so soon after watching my sister die is impossible to fully describe: I understand what is happening, yet I do not want to understand what is happening. I keep coming back to Samuel Beckett, “You must go on, I can’t go on, I’ll go on.”
But right now I need to look after my mom. It’s okay. I’m okay. I’m the Overlord of Death.
4/29/2018
Watching My Sister Die
I am too young to write these words
too immature
too consumed with my own self-doubt
and too knowledgeable about death to see how and why
my sister will soon die.
Up against a ticking clock that won’t stop
and that will most certainly break my sister down before
my parents die themselves.
So I’m adrift right now because I just spent
three days watching my sister enter the finality
of her life →
As we sang Happy Birthday and I struggled to even
finish the words.
knowing that this is/was most likely her last party.
And still I can’t find a way to write this all down.
To capture how much I cried and how many tears
I saw as everyone comes to understand what’s really
happening.
Sitting in this second-rate airport lounge knowing that
my sister will never leave this city again.
That this is where she will die.
That in this same fucking ridiculous second-rate airport lounge
I held Santa Maria in my arms when she could
no longer hold back the tears.
Trying so hard to be strong for the two of us.
And so I’m lost right now old friend.
Staring out the window
Wanting to tell Death all about what’s happening
knowing that eventually I will. But not now.
I burned that possibility in my haste and loss of control.
Realizing my mistake
staring into the void.
A void I can see slowly consuming my quickly dying sister.
So I’m coming back to this page and words again
Old Friend
to the untimely death of my too-young-to-die-sibling
knowing that no matter how much I write and how
much ink I spill
this death is going to happen far sooner than anyone understood.
And I will need you more than ever Old Friend
to let me run my thoughts sideways across your pages
so that I continue to choose life
even as my sister deteriorates toward death.