Celebrate the Death
I was excited to die. It wasn’t suicidal ideation or acceptance or resignation. It was a brimming anticipation, in light of my stage-IV cancer diagnosis. It was an astonishment to be so alive and so aware I was dying.
I lost most of my family to sickness and death. I want to see them again, liberated from pain and transfigured with joy. I can’t know if there is anything like that after life, but I live by a dire hope that there is. When I got close to my own death, I let that desire fly inside me: I could hardly wait to see them again.
It could have been a matter of months. When I was diagnosed at age 33, my esophageal tumor had already spread; my liver was saturated with metastases. Because I asked, my first oncologist told me how I would likely die: My liver would shut down. It would happen pretty fast: jaundiced eyes, flapping hands, and then… I was relieved I would go quickly. I wasn’t afraid of dying, but I was terrified of suffering.
I imagined the moment you die to be like lightning behind the eyelids. I imagined the heart collapsing into a star. I know it’s not that beautiful. But I needed a way to fast-forward over sickness and get straight to death. So I fantasized going out like an earthshaking light. Poeticizing death was my coping mechanism, an odd hobby, a bit of a thrill.
I got excited to die. But I kept living: Two years on chemo, until an enlarged lymph node lit up on a PET scan, a sure-fire sign of tumor activity. My second oncologist, a tiny force of might who plays in a women-over-50 soccer league, who sprints clinical circles around her male colleagues, took my case to the tumor board at Yale. She got me a spot in an immunotherapy trial, a cutting-edge study to test drugs that unleash the immune system on cancer.
The experiment worked wonders on me. The lymph node shrank to its normal size; the liver lesions did not grow or change shape over time. The clinical trial drugs seemed to be keeping my cancer cells at bay. But they put my immune system into overdrive. The treatment that was keeping me alive caused life-threatening side effects: inflammation of my GI tract and my liver. I had to stop immunotherapy.
Was this the beginning of the end? Apparently not: My scans kept coming back stable—not cancer-free. That wasn’t in the cards for me. But I’d gotten so enthralled with dying early, I felt all the more free: I was getting to live as if I didn’t have cancer. I was well enough to work and travel and go on jogs, without having to think about the long run, the slow decline of the body and mind. My death would be quick.
I wasn’t on the anticipatory edge of death anymore; it became a static fact I internalized. And I carried it like a secret gift, an unplanned pregnancy no one could see yet: something I didn’t know I wanted, until it was part of me. Sometimes that gift would well up inside me, widening and brightening my eyes. I felt magnified by dying.
It was a bit of a let-down when my clinical trial doctor told me I might have a normal life expectancy. I knew I should be elated—maybe I was, but I couldn’t feel it. What about the gift that had become part of me? I was ambivalent, two-hearted. One heart was ecstatic. One heart was holding loss: I was glad to be getting my life back, but I wasn’t ready to let go of dying early.
The day I found out I could have a normal life expectancy, I was helping make funeral arrangements for someone whose life got cut short instantly: M., a 32-year-old Congolese refugee who died in a car wreck in Connecticut. I never met M., but I knew his family through the refugee resettlement agency where I work: his dad, who’d been a nurse for Doctors Without Borders in Burundi; his mom, the MVP of the refugee women’s soccer club, even when she was fasting for Ramadan; his little sister who would crack the whip on her high-school friends when they slacked off on their college applications.
I was helping the family plan a wake and a graveside service. They’ve seen so many die, but they were unfamiliar with the business of American funerals. I’d been through it five times—two aunts, my grandparents, my dad. Those few days when the body’s in the morgue, and it hasn’t hit you, because you’re running around with so much to do. The way you can stave off grief with logistics—choosing the casket, ironing the outfit, picking up the death certificate. Maybe it doesn’t shatter you until you see the urn, or the hearse pulling up to an open grave.
I emailed a few minister friends of mine, asking if they know of any funeral homes in the area that might give a discount to a refugee family. A rabbi friend wrote back, to e-introduce me to the local Jewish funeral home director, “a mensch in the first degree,” he wrote. “Ashley’s a mensch, too.”
I read the rabbi’s email on my phone, in a recliner at the cancer center where I was going to have a CT scan. I almost forgot why I was there, until a nurse came to do my usual pre-scan blood draw. I had to put my phone down so the needle could go in. And while I was watching the blood fill the vials they would send to the lab, it dawned on me: the cancer that had once taken over my life, had become, in my post-immunotherapy stability, just a nuisance, a needle prick, a little interruption of my life’s work with refugees.
After the blood draw, I went up to the diagnostic imaging check-in desk. When it was time to drink the oral contrast dye, an iodine solution they mix with Crystal Light, I knew I could get back to my funeral planning work. You have to wait an hour between starting to drink the dye and getting scanned. I repurposed that CT waiting room into a satellite office: I turned off the elevated TV that was blaring Dr. Oz, revved up my computer, and called the Jewish funeral home. “Yes,” a man’s voice craned up, as if he’d been anticipating my call.
“Thank you so much for offering to help,” I said.
“Well, I want them to be able to bury their loved one in dignity.” His accent was like the Coffee-Talk ladies from Saturday Night Live, the ladies who get easily verklempt. He was going to donate a casket. “It can be simple, if that’s what they want,” he told me. But he wasn’t going to stick them with a pine box if they prefer something more high-end, like mahogany or copper. “After what they’ve been through, and all the hatred going on in this country. I stopped watching after the State of the Union address, and I was a news junkie,” he said. “I want to remain anonymous. But tell them that a rabbi and a Jewish funeral home director want them to know they’re welcome here.” Then, I got verklempt.
The minute I got off the phone with the funeral home director, a lab technician came to take me back for my CT scan. Half an hour later, I got the results from my clinical trial doctor. It was the good-for-incurable-cancer news I’d been getting for the past three years: no significant change in the liver lesions, no evidence of cancer activity, visible on the CT. But this visit, he recommended that I get a PET scan, a more sensitive diagnostic image, as soon as possible: The PET could confirm his interpretation of the CT scans over time—that my cancer is inactive. And if it does, he would space out my CT scans to twice a year, instead of every three months. “Because you’re still young,” he said. “You’re only 39, and to scan you every three months for the rest of your life wouldn’t be a good idea.”
The only other time an oncologist has said the rest of your life to me, it would be a few years at best, probably less. I needed to clarify this time: “Because you’d be concerned about my exposure to the radiation from frequent scans for the rest of my life?”
“Yes,” he told me. He’s cautiously optimistic that I’ll have “a normal life expectancy.”
“That’s great,” I heard myself say. “Thank you.” An understated veneer over my bewilderment: I was expecting to die early, I didn’t say. And what a roundabout way to drop a bomb!
I didn’t have the wherewithal to shift gears, much less paradigms of life expectancy. I’d adapted to my incurable-cancer reality, with a dogged plan: I would drink life to the lees and go out with a bang. What now? Sip and whimper along until some young people decide it’s time to take the car keys away? Maybe that’s my defense mechanism talking, my attempt to protect myself from disappointment if the cancer comes back with a fury.
When I left the immunotherapy clinic, I needed a place to write. I went to the gynecologic oncology waiting room, where I’d become a regular during an ovarian cancer scare a couple of years ago. (Just when my esophageal tumor seemed to be settling in to dormancy, my ob-gyn discovered an abnormal-looking ovary.)
Maybe I needed to go back to a site of anxiety, so the possibility of staying stable long-term could begin to seep in. Plus, the gynecologic oncology waiting room is the nicest part of the cancer hospital I know: There are purple orchids and Oprah magazines and a Keurig with free coffee. I didn’t know what to do with the prospect of a normal lifespan, so I made a cup of coffee, sat in one of the plush chairs, and jotted down a to-do list: Make more funeral calls, I wrote on the back of a copy of my CT-scan report. Call mom; go to prayer chapel; get toothpaste.
Then, I started scribbling in my notebook, trying to capture what was happening in the disorienting wake of the good news I’d gotten from my clinical trial doctor. But I kept looking up from the page: at the volunteer who wheeled in a cart offering mini cans of ginger ale and bland snacks and knit hats; at the blue ribbon next to a plaque that says “ovarian cancer: listen for the whisper;” at the woman on a stretcher, a man standing next to her, holding her by the elbow. It’s not fair, that I was scribbling away on the first day of the rest of my life, and she had to lie there in the middle of the waiting room, unable to make a to-do list or get herself a cup of coffee. I remembered my Aunt Judy—all she could take by mouth was ice chips when she was dying of ovarian cancer. And the man I saw that morning: He was waiting for a CT scan, too. But he had to take the contrast dye through a feeding tube.
Across the room, there was a photo collage labeled the “Wall of Heroes.” Survivors, I assumed. I didn’t want to be on that wall. I didn’t want to be part of the display, the parade, we make of cancer survivors. I want to celebrate those who are dying and those who have died of cancer: that woman on a stretcher, Aunt Judy in her grave. If my cancer makes an impression on this world, I want it to be like a startle of sparrows.
I’m not amazingly strong or brave or a fighter—whatever it is that makes people idealize survivors. I’m just lucky. It was a convergence of timing and resources that enabled me to survive cancer: the right breakthrough in treatment came just when I needed it; I had the type of tumor that’s responsive to immunotherapy, an oncologist who went to bat for me, the financial means to afford exorbitant co-pays while working part-time, and a team of friends with the medical literacy to make us a force of patient advocacy to be reckoned with.
I’ve been a little stingy with my good news. I’ve only told a handful of people: my life partner, my family, and a few trusted friends. I don’t want others to think of me as someone who has beat cancer. It’s never been a battle to me. And I don’t want to be part of the survival-of-the-fittest mentality that valorizes those who survive cancer over those who don’t. I’m surviving in uncharted territory: I’ve had a durable response to immunotherapy, but the research is so new, the oncologists can’t know how long that will last.
In the years since my diagnosis, my mom prayed for me to be restored to unencumbered life. I love this prayer, because it carries the story of what cancer has given me, through what I thought I’d lost: At first it took over my life; at times it sapped me so much all I could do was sleep. But cancer liberated me to receive unencumbered life. And I got that long before I got the news that I might be cancer free.
I only got debilitatingly sick a few times. Otherwise, cancer gave me access to some ecstatic edge, some cusp of death that let me live more abundantly than ever. Sometimes I’d get so exhilarated I was hardly able to contain my life force. I would dart around and stop to write; I couldn’t scribble fast enough to get my gladness on the page. I was buoyantly alive—not in spite of my cancer, but in light of dying.
I love my life, the work I get to do with refugees, the home I’ve made in a sanctuary city. I’m glad I might get to be here for the rest of a lifetime. But I’d been living year-to-year. I’m not used to having decades, maybe, ahead of me. I coped with cancer by falling in awe with dying early; now I have to settle down with a life that may not be cut short.
I’m living a medical miracle, a slow miracle that’s still unfolding. I know from having cancer and through working with refugees that a miracle of survival is not the end of the story. After you survive, you have to live. It feels like borrowed time, and you’re acutely aware of how precarious it is to be alive. You remember those who died, and those who are dying, of what you survived.
After miracles of survival, disasters keep happening: like M., who survived the Congolese civil war, only to lose his life in a car crash. When a minister asked M.’s dad what the family wants at the funeral, he said, “We need to sing too much.”
One of the refugee kids taught me a Rwandan grave song. Aheza, mwi iruru… “It means ‘I’ll see you again,'” he told me. It’s what you sing when you bury someone who died. They must have sung it so many times.
It’s Ash Wednesday, my favorite holy day. The one day a year it’s okay to go around with death on your face, an ash cross smudged on your forehead. It’s not about the cross for me; it’s the living-dying brightness of your eyes. You might be sitting across from your office-mate with one of those frazzled-cat hump-day posters on the wall between your desks. But the sign under your bangs tells us we’re dying awake.
It’s been two weeks since I was told I might have a normal life expectancy, after six years of dying early. Do the ashes feel different to me this year? I can’t tell yet. This morning, I did my usual Ash-Wednesday routine: I got up early and excited. I brushed my teeth, washed my face, and had a cup of tea. I pulled my hair back with a bobby pin so my whole forehead is open for the ashes, and left for a 7:30am mass. I was late, as usual. My mind wandered during the Scripture readings. I was eager to get the ashes. I felt bad that I don’t fast. And then it didn’t matter.
“Ashes to ashes, dust to dust,” soothed me like a lullaby. And from the time I got in line until I noticed I’d closed my eyes to receive a sign of dying, my mind was quiet.
It didn’t last long. Soon I moved on to thoughts of coffee, as usual. That’s what I love about Ash Wednesday: the holy suspension bumping into our usual ways. Eucharist and Dunkin’ Donuts. Kneeling and slouching. Ashes and crumbs on your face.
It makes palpable the gift cancer has given me: a way to touch the reality that our living and dying are happening at the same time. Cells are always rising and falling. Cancer is cell division gone awry, an over-abundance of life: Some cells divide so fast some bodies die early. Dust to dust, the stuff of us, before and after life.
At Easter, Christians say, “We celebrate the death and resurrection of Jesus Christ.” But Ash Wednesday gives us a long pause, a quiet halt, to celebrate the death. I hope Jesus rose and saw his mom and walked again with his friends. I hope my body will rise after I die to meet those I’ve lost. But I want to celebrate death, and let resurrection, or whatever happens after life, be a mystery. Not a victory over death, but a way of dying that astonishes the body with light.
Ashley Makar works with refugees in Connecticut. She does community outreach for IRIS--Integrated Refugee & Immigrant Services, in New Haven. She has an e-book of essays, You Were Strangers: Dispatches from Exile. Ashley has published essays in Tablet, The Birmingham News, The Struggle Continues (the Birmingham Civil Rights Institute weblog), Religion Dispatches, and The New Haven Register.