When I was twelve years old, my dad shook me awake by the shoulder one morning at 4 a.m. “Alu! Aluuuuu. Do you want to come with me?”
I opened my eyes. I didn’t know where he was going, but my answer was always yes. My father traveled a lot for missionary work, and when he was home, he split his time among me, my three sisters, and my mother. Alone time with him was rare, and when he was gone, I missed him so much that I would smell his clothes. He loved little adventures, and my preteen heart couldn’t turn one down—still can’t today. Not ever a morning person, I jumped at the opportunity for a mystery mission and got myself dressed.
It was 1990, and we’d been living in Colorado Springs for a year. My dad and I bundled up against the December weather and climbed into our maroon Chrysler station wagon. I removed my fingers from the thick black-and-white glove that matched my hat, to make sure the seat belt snapped into the passenger side seat belt holder. It stuck a little. Touching the cold metal of the seat belt clasp made my fingers numb. I blew hot breath on them, stuffed them back inside the warmth of the glove, and sat on my hands. With the radio on a news channel, my father headed toward the highway. My mother was out of town for a few weeks, and while she had made enough meals to get us through, my dad decided he wanted fresh meat to supplement the meals. My dad is serious about his meat. The sky started to lighten as we set off on our adventure. I was giddy.
An hour and a half later, he pulled off the road somewhere in rural Denver and parked along a fence with a home in the distance. Animals roamed, separated by species. A man greeted us as we got out of the car and he and my father exchanged pleasantries. I spotted goats, cows, and a lot of farm equipment. The smell of manure hung in the air. Finally, we arrived at the chicken coop, where they were already singing cock-a-doodle-doo to greet the day.
Breathing into my scarf to generate heat and to diffuse the pungent smell, I watched the sun rising over the Colorado Rocky Mountains. Then, in the distance, a nightmarish bleating. It was so desperate that I could feel the fear and sadness in my own body. Adrenaline streaked through my chest and into my fingertips, zapping warmth into them. I couldn’t breathe. I scrambled to see where the noise was coming from and if I could help, but as in a real nightmare, I couldn’t. While my dad surveyed the chickens to select a few, I grew increasingly distraught. Where was the noise coming from? Why was the animal so scared? What was happening to it?
A loud blast sounded, and the bleating came to a sudden halt. It felt as though the shot hit me directly. I instantly burst into tears.
My dad rushed to my side. “What’s wrong, Alua? Eh? Why are you crying? What’s the problem?”
I couldn’t find the words for the shock.
My father’s alarm grew and he shook me gently.
“The goat, Daddy,” I managed, choking through my tears. “I think they killed a goat.”
My dad’s eyes narrowed, then quickly widened. He’s never handled the tears or discomfort of his daughters well. He’s the type of man who laughs so hard he coughs, but as of that morning, I hadn’t yet seen him cry. My father always hoped to protect us from pain, and his jovial nature and solid dose of African masculinity didn’t leave room for maudlin emotions or big displays. Given that I was full of both, I was a handful.
My runaway passions delighted, flustered, or annoyed my parents, depending on the day. In Colorado Springs, I wanted to paint my basement bedroom bright yellow and to my surprise, they agreed. By the third trip to the paint shop so I could get the paint color juuuuusssst right, they grew understandably frustrated, but took me anyway. Once when I was a little girl I brought a bug I’d caught into the kitchen, thinking my parents would be equally amazed by the little creature’s iridescence. “Take it back outside or I’ll kill it!” my mom yelled. Animals and bugs did not belong in the house, and I had enthusiastically trampled a boundary yet again.
That morning at the farm, my father muttered a bunch of words that I couldn’t decipher, patted me on the back as though to dislodge something stuck in my throat, and rushed me quickly to the car. He was embarrassed; I was inconsolable. Despite all the danger and risks that my family endured fleeing Ghana, this goat was the closest I’d come to facing a living being’s death. How was it crying one minute, breathing one minute, and dead the next? And why had nobody seemed to care but me?
On the ride home from the animal murder horror house, my father tried to explain that this was the way humans got their meat. He’d grown up in a part of Ghana where families are responsible for killing the animals they eat, so this process wasn’t unusual to him or most people around the world. Me? I just stared blankly out the car window. I couldn’t get my head around it; I’d heard the animal cry. I’d felt its pain. How could I ever put animal flesh in my mouth again when I could feel the animal’s emotions? The animal was in fear when it died and now I was supposed to eat that fear? No way. While I couldn’t do much about that one goat, I could choose not to harm another goat.
By the time we arrived home, I was clear that I wouldn’t eat any kind of meat again. My father knew better than to keep arguing with his hardheaded and softhearted daughter. So he offered to take me to the only health food store in town at the time to find meat substitutes. And because my father’s love also shows up as solidarity, he decided to become a vegetarian with me.
He lasted until lunch.
Back then, the meat substitutes tasted like cardboard. Vegetarianism was still twenty years off from becoming sexy. After gagging through a veggie burger, Dad asked if he could stop being a vegetarian. I laughed and let him off the hook, just grateful he cared.
The goat was an early taste of my own runaway empathy. Empathy feels virtuous, but just like any intense emotional experience, it can be a sort of addiction. It has been for me. My broken heart has served as my north star as far back as I can remember. At age eleven, I fell hard when I learned the story of a teenage boy named Ryan White. By the time my family moved to America from Ghana, Ryan White was already a household name. He was a white child with hemophilia who had contracted the HIV/AIDS virus from a blood transfusion. HIV/AIDS was poorly understood at the time, and teachers, parents, and school administrators were terrified to let Ryan be in class with other kids. Ryan fought back legally and, in doing so, became one of the first people to bring national attention to the AIDS epidemic. His youth and wholesomeness cut against the perception that HIV/AIDS only happened to Black folks, gay men, drug addicts, or bad people—in other words, people who “deserved it.”
I became preoccupied with Ryan’s ostracism from school and society because of his illness. I couldn’t understand why he couldn’t go to school like I did because of something his body did. As I learned more through news stories, I ached for the deaths of untold others, who often suffered alone and without family. I was too young to understand the demonization of gay men or the sexuality judgments persistent in how we talked about the illness. But I was sensitive enough to know something was fucked up. It broke my budding-death-doula heart. I sobbed through Ryan’s television funeral in 1990, glued to the TV.
Just as it would with the goat a year later, my heartbreak sparked righteousness, which eventually flared into activism. In 2000, the year I graduated from Wesleyan University, I spent the summer in Chiang Mai, Thailand, working in HIV/AIDS education at the YMCA. I held classes on sexual health while my Thai counterparts gathered around me with their fingers in my hair, joking that if a spider got caught in my teeny-weeny Afro, it would get stuck and die. Even though I’d lived twenty-one years with a 4C curl pattern, I washed my hair too often after that day, for fear of it turning into a spider grave site.
That was an enlightening trip, in more ways than one. I learned the importance of understanding a culture’s mores and values before discussing topics that are taboo, like death. Or sex. During a weekend trip to Myanmar to expand the reach of the sex ed program, my friends and I showed up at the location where we intended to teach, coordinated by another aid organization, only to find armed guards outside forbidding our entrance. I quickly learned to follow the lead of the community members before asserting myself and my own beliefs. I learned that sometimes ignorance just means lack of access to knowledge and information.
Despite the cultural challenges, I felt more myself in Thailand than I’d ever felt. I had been to other countries before, but now I was older and on my own, with no parents to protect me and no sisters with which to conspire. I was doing work that felt good in my spirit, going on adventures with fellow travelers to the Thai islands, seeing how other humans did life, and eating fresh mangos daily. I couldn’t get myself to leave.
I was supposed to fly home from Thailand and start law school, but I delayed my ticket back to the States until I’d missed registration at almost all of the schools I’d gotten into. My dad promised to come get me himself if I pushed my flight back again. I got on the next flight and showed up to register at University of Colorado Boulder School of Law, the last school that would still take me, even though I was late. Walking through the law library stacks, jet-lagged and pissy, I could still smell phantom pad see ew and hear tuk-tuks.
After my first year of law school, I worked at South Brooklyn Legal Services in the HIV/AIDS Unit, pairing my formal education with my youthful Ryan White heartbreak. Finally, I could do something tangible about the injustices that broke me in the world.
One of my first clients was Natasha, a slim Black twenty-six-year-old woman with a sunflower tattoo on her neck. Born and raised in Brooklyn, Tash had been formally educated at an elite, competitive college—one of the “Little Ivies”—like the one I’d gone to. She had a short natural haircut like mine and loved to toss big vocabulary in with slang. We’d flip effortlessly among topics like Mary J. Blige, Mumia Abu-Jamal, and Buddhism. She was just as tall as I was, and she had a gap in her front teeth too, albeit a smaller one than mine. Because she had never tried to close it despite suggestions from numerous dentists, I accepted her as a member of the gap-toothed crew. Many of us had to fight to keep our gaps. Tash and I seemed to have so much in common. But Tash had contracted HIV from an old boyfriend. Now she had AIDS, was raising their kid as a single mom, and was on government benefits. All while facing eviction.
Once again, my empathy got the best of me. Her situation felt personal. Day in and day out, I catered to Natasha’s needs, far beyond what was required of me as a law student attending to her housing discrimination case. I helped her pick up prescriptions and order meals, and I taught her son how to tie his shoes. I was often tired at work, spending evenings talking to Tash when she was scared, lonely, or needed an errand run.
None of these were part of my job. And yet I felt more alive and more certain of the value I was offering when running these errands then when I was typing out responses to a demand letter. In legal services, I was discovering, there were few opportunities to feel like I was truly helping. No matter how hard we worked, it often felt like sweeping sand on the beach. The system of oppression kept dumping more sand on us. The work was low on immediate gratification.
Tash may have been taking advantage of my generosity, but I didn’t care. The relief I sensed she felt when I was near was true—and real—enough for me. Unfortunately, my own needs were going unmet to meet Tash’s. This is the danger of those with runaway empathy. Forget just giving you the shirt off our backs. We would give our skin if we could.
Maybe I was enacting some confused version of what my parents instilled in me. They’d spent their lives in service, after all—to the gospel, to family, to community, to us. I might not have ever shared their religious fervor, but maybe some Jesus had snuck into my worldview anyway—love thy neighbor as thyself. I seemed to be remembering the first three words and forgetting the last two. It felt holy.
Nearing the end of my summer internship, my supervisor, Cynthia Schneider, called me into her office. I thought I’d be commended on what a good job I was doing with Natasha. Instead, Cynthia told me to back off, in an uncharacteristically blunt manner. When she asked why I was logging so many hours with Tash, my only response was “If it were me, I’d want help doing all of these things too.”
Cynthia shook her head somberly. “Well, Alua, it’s not you.” We sat in silence for a beat while I tried to understand this revolutionary concept. Tash was Black. About my age. Same education. Similar background. An equal. A peer. A sister. And still, she was not me. I could not understand the depth of her experience because I wasn’t having it. What a novel concept. I’d collapsed the space between myself and Natasha, compounding our experiences and needs. Empathy on crack. I’d also never asked what Tash needed beyond our initial interview and original client retainer. Kindly, Cynthia warned me of burnout and malpractice if I didn’t refocus my mind on Tash’s legal needs. “Protect your heart,” she suggested.
This was perhaps the greatest piece of professional advice I ever received, even trumping the advice to get a CPA when I began Going with Grace, my death doula business. It’s important not to conflate others’ experience with your own, because then we give them what we would want for ourselves rather than what they need. That is a common mistake. It’s one I’ve had to learn not to make.
Cynthia’s words have carried me through death work, and they come up time and time again. Empathic people often fall repeatedly into this trap. We try to place ourselves in another’s shoes. But it simply doesn’t work with people who know they are dying, nor with people who are grieving a death. There is no way to put ourselves in their shoes, even if we have had a similar experience.
Part of our desire to put ourselves in another’s shoes is to fix the perceived pain of the other. But there is no fixing the pain of grief or death. This means that we must get comfortable with that part of ourselves that feels helpless in the face of another’s pain. It might mean long silences. It might mean they don’t want your company or your tuna fish casserole. Our support must show up in different ways.
My motto to support the grieving or the dying is simple: show up and shut up. After acknowledging that the situation sucks and you don’t know what to say, let them lead the way. If they are silent, be silent with them. If they want to talk about something benign, follow them there. And if they want to talk about their pain, let them talk about their pain—not your experience, unless you are asked for it. Just be in the trenches with them and give the incredible gift of bearing witness.
For years I wondered what happened to Natasha. If I had to do it all over again, I probably still would have taught her son how to tie his shoes, but I would have asked her what kind of support she needed and wanted instead of stepping in and trying to be all things to her. I imagine that not long after our work together, Tash died, a victim to an insidious disease. I remain grateful that she taught me the difference between compassion and empathy.
Empathy says: “I know what you are going through.” Compassion says: “I might not understand exactly what you are going through, but I am curious about your experience, understand that it is tough, and I am right here with you.” I believe compassion is the most healing force on the planet, especially as someone lays dying. Death doulas and those who sit bedside must come from a place of compassion to be effective. From any other place, it is patronizing or paternalistic. Even though well-meaning, it is the equivalent of shoving our love down their throats. For example, have you ever tried to love a friend into sobriety? Or to cajole them to break up with somebody? Ever attempted to convince a loved one to lose a few pounds because you know how good it will be for them?
Doesn’t work out so well, does it?
The same thing applies in death work. In supporting a client through the dying process, “I know what is better for you than you do” might as well be a cardinal sin. It shows a lack of trust and respect in a client’s ability to govern their own lives—and deaths.
So what happens when it seems like the most loving thing to do is to “help someone” accept the fact that they will die? Or to accept the fact yourself that someone you love is dying?
About three-quarters of the calls I get are from well-meaning family members who want me to help their beloved accept the fact that they will die. It’s a really terrible position for me to be in: the sick family member thinks I’m the angel of death coming for them. I feel like a jerk and the beloved feels betrayed. No one wins.
Learning to sit alongside our mortality is one of the most important journeys we will take. And it’s so personal. We approach death like we approach life. Some people effortlessly hold the truth close, while others hold it at arm’s length. Neither is better than the other. Everyone moves in their own time. If we can’t convince our best friends to leave their toxic and unsupportive partner, what makes us think that we can force recognition of the deepest existential dilemma on an unwilling human?
Years after I tried and failed to become Tash’s personal savior, I came up against this question as a death doula when I meet Akua. Standing at the threshold of her home, I knock gingerly at first, then louder. I can hear what sounds like live music coming from inside, even with the windows closed. While the time of my arrival has been coordinated with her son Reggie, I never quite know in what state I will find my clients. I am certainly not expecting a concert.
A professional caregiver answers the door after a few knocks and lets me into Akua’s first-floor apartment. Speakers blare music from every corner and instantly, I recognize Fela Kuti’s saxophone and multilayered rhythms. There is barely any space on the red walls, which are covered in African art—masks, paintings, renditions of village life and abstract human figures. The caregiver walks me through the maze of books, wood carvings, and sculptures on the floor on the way to the bedroom. I find Akua in the bed, jovial, slight in stature with a bald head, dancing elegantly with just her skinny arms. This seems highly unusual for someone with the disease progression Reggie mentioned. Could this be her death rally?
“Come in, come in! What an honor it is to receive you in my home!” Akua shouts over the music even with a weakened diaphragm. She draws out her vowels as though she is singing the words. I shout gratitude back as Akua motions to the caregiver to turn down the music. We all approach death in different ways and at this moment, Akua’s death is sounding like a rager. I am both bemused and suspicious. What kind of death will this be? What will it require of me?
Born as Helena but coming of age in the sixties, Akua has adopted the Ghanaian name meaning “girl born on Wednesday” for most of her adult life. In her illness, she’s reverted to Helena, as she’d never changed her name legally and got tired of correcting doctors. I agree to call her Akua and we marvel over the odds of an African American who has traveled extensively around West Africa finding a Ghanaian death doula in Los Angeles. She tells me she believes it means she would be returning to the land her ancestors were stolen from, ushered by me. Except she believes it isn’t yet time.
“This morning I spoke with my prayer group and they reminded me that God isn’t finished with me yet. I’m not done with this life. I’m not ready to die. I am going to be healed of this cancer!” She punctures the air around her bed with her finger on each accented syllable.
I am surprised, but the jovial nature of her home suddenly makes more sense. I wasn’t expecting this, and my bemusement has turned to curiosity. According to Reggie, I am here because she wants to create rituals for her deathbed. Akua knows what type of work I do and has asked for me specifically. From his description, she has been living with osteosarcoma for a few years already, but has been confined to her bed for months now and is aware her death is approaching. He tells me she’s made peace with it. The tumor on her spine has grown rapidly, blocking the nerves that allow her to move her legs, and the cancer has metastasized to her brain. She is quite thin and frail; her dark brown eyes are shadowed by her brow bone. But they twinkle.
The week prior, Reggie and Akua had been looking for hospices and asked for my opinions based on the doctor’s recommendation. Her time to die is approaching, but Akua is not ready. And it is not my job to convince her. I’m a death doula who believes in miracles, but still just a death doula. Not God. And God has told her that it isn’t yet her time. I don’t make it a practice to argue with what any god has told someone. That’s a losing argument. Since death denial is often rooted in fear, I ask Akua what she’s afraid of.
After some consideration, she replies softly, “That I will die before I have done all I need to do.” This is a common fear of death. Death can come at any time, whether or not we are prepared, and we feel powerless at the notion. We think of our lives as our own, our egos wrapped up in what we have to contribute to the world, and not of ourselves as just one note in a symphony. When it’s time, death doesn’t fail.
“I am a dancer and a performer, you see, and I still have my best work before me.” Her conviction is so pure I want to believe her. She still dances with her arms along with the music and her words, Fela’s saxophones now a whisper in the background.
“What would you like to do in the time you have left?” I ask. It seems like a safe enough question. I hope she doesn’t notice that I have neither affirmed nor denied her suggestion.
“I want to surround myself with music and art. I want to dance again. I want to write plays and perform on stages. There is still art in me.” Together we conceive of what the next few months could look like, making alternate plans for the possibility that the tumor on her spine doesn’t allow her to dance. I fear she will never dance again, but for a moment, I keep this to myself.
I struggle with this decision. Am I feeding a delusion that Akua will eventually be back on the stage? Hope, at the end of life, is double-edged: it can either be a powerful motivator or it can blind us to the truth we must prepare for. We might reasonably hope to make it to our granddaughter’s graduation, but hoping for a miracle when science and the reality of our dying bodies tells us different? That can be crushing. I want to guard Akua from the disappointment that will eventually come when her cancer spreads. It is my understanding that it is spreading quickly. But I can’t save her (or anyone) from the deep pain of embracing her mortality. If I tell Akua what I believe to be the truth, she might crumple under the weight of it. She might shut down. But it might also mean that she is better prepared to face what is coming.
This is a classic death doula’s dilemma but with only one solution: meet the client where they are. In their journey toward death, I remind each human of their right to make their own choices. Akua chooses to dream of dance. At that moment, I choose to dream with her.
We agree that I will find her a wheelchair that can fit through her doorway and look for a contractor to put a small ramp at the entrance to her apartment building so she can get into a wheelchair vehicle. She wants to go to shows, so we look at the schedule for the Ahmanson Theatre in Los Angeles, her favorite venue. I don’t feel any internal conflict supporting her in this. I am not promising Akua that she will recover fully. I am supporting her in living these days in the way that will fill her spirit. This is the highest creed of a death doula.
In the next two weeks, Akua and I speak every few days. The wheelchair is easy to acquire. The ramp down the front steps of her apartment building is not. The contractor is willing, but the building isn’t ADA compliant. That’s a battle that I am clear we don’t have time for. Her disease is progressing and in a short time, the tumor on her spine will continue to spread pain throughout her body. Reggie, after his initial shock and frustration that his mom has been insisting she would recover, calls again and asks me to go back. This time, he assures me, Akua wants to talk about her death.
My heart hurts for him. He is a mother’s son, terrified about losing her and also what it would mean for her to die without making peace with her ending. If Akua had been my own mother—and with her smooth brown head, bald from years of chemo, and her Christian convictions, she reminded me of her—I might have been more impatient with her dreams. But she is not. Tash taught me that.
The next time I visit Akua, there is no Fela Kuti playing, but the heaps of items and art still decorate the floor of her apartment. Her closet doors are open and her bed faces the rows of colorful clothing. “Take whatever you want,” she says, gesturing weakly at the display. Never mind that the last time I was her size I was six years old, and even then I was probably rounder than she ever was, healthy. I oblige and go through Akua’s closet, using the opportunity to talk about what she wore and what she’s seen in her life. She tells me stories of the costumes, the productions she’s been in, and the seamstress in Ghana who made an outfit for her out of traditional kente cloth. This time she sounds more like a woman who knows the end of her life is near—thoughtful, retrospective, and pensive, yet still dramatic. We don’t lose all the parts of ourselves because we are dying. We become more of who we are.
When the style talk stops, Akua and I talk about her dreams of the Ahmanson Theatre. I apologize if I created any additional hope. Blaming no one but herself, she tells me that she willfully ignored the doctors, the referral for hospice, and the pain coursing through her body. She wasn’t yet ready. But in her quiet moments, she’d begun to consider what her tumor has come to teach her.
When she accepted the truth that her death was around the corner, she’d connected with what she most wanted out of her life: dance, performance, the stage. When it was clear she wouldn’t get to do it anymore, she looked for ways to be it. She shared that her tumor had come to remind her that she was a dynamic and resplendent being regardless of whether she was on a stage. It was her birthright and she no longer needed to be on the stage to claim it. She had lived it. And now she is ready to consider her deathbed and to die.
For Akua’s death, she wants to be surrounded by purple roses, lilacs, and lilies. She wants to hear Nils Frahm playing on the speakers, as loud as her dying body can bear. She wants us to close her chakras as she is actively dying, and together we create a ritual to complete after she has released her last breath. She wants Reggie, his wife, her grandchildren, and her best friend present with her. She wants to be in her home, which is alive with music, art, and experiences. But most important, she wants to die in full surrender, grateful for the gift to have been resplendently and dynamically human. Her death came just three weeks after my first visit, and a few days after my last.
Had we tried to force Akua to embrace her death earlier, she likely wouldn’t have made this powerful self-discovery. She did it in her own time. Sometimes all we need is a little time, if we’ve got it. And for others to lovingly hold us exactly where we are. And if you’re the person who can’t accept that another will die, we will hold you when you finally do.