words (English): Units of language, consisting of one or more spoken sounds or their written representation that function as a principal carrier of meaning.
Language learning begins in the womb, and an eavesdropping baby can start picking up language once hearing is developed, at around seven months. Newborns can already comprehend speech patterns—which essentially means that ever since I was born, I’ve been taking in words, their meanings and values. At eighteen months, outside my mother’s womb, my baby self knew about inflections, syllables, and syntax.
I know a lot of words I wouldn’t have learned in the womb—words that are only given meaning by experience. I know words only a doctor should know, jargon used after years of medical training. Words like “pulmonary edema” or “cystic fibrosis” or “hepatic encephalopathy.”
But if I say, “hepatic encephalopathy,” not one of my friends would flinch, because I can say it smoothly. They know I would only ever need to use those words when talking about my mother. They don’t ask about these words because they have no use for them. They have no need for a WebMD dictionary in their heads. I know too many words.
Whenever I have to tell people my mother died, the first thing to come out of their mouths is “I’m so sorry,” as if they had something to do with it, as if they’re at fault for some reason, as if they don’t understand why they’re saying it. I’ve added tons of meaningless words, strings of obligatory-but-empty condolences, to my mental dictionary of things that don’t mean what they should.
sympathy (English): A feeling or an expression of pity or sorrow for the distress of another; compassion or commiseration.
“You have my deepest sympathy.” I looked it up once—the origins of the phrase means “together-suffering.” But that word was usually offered to me with a straight face and an awkward touch on the shoulder. The people who said it to me would get in their cars and leave. They hadn’t seen my mother in years, mentioned that they hardly recognized her married name in the obituary I wrote for the newspaper. Awkward arm touching doesn’t seem like shared suffering to me.
Someone, a distant aunt, I think, wrote an Emily Dickinson poem into a sympathy card with a dove on it—always a dove on it. “Unable are the loved to die, for love is immortality.” I understand the sentiment. I loved my mother. My mother died.
“Let’s talk about death,” my mother said to me. “Sit down.” I was fifteen and thought it was almost a little silly the way she just blurted it out like that. When I was little, I had a guinea pig named Fluffy who ran around and squeaked in her bedding one day and was dead the next. I woke up on a Sunday and my father presented me with a shoebox along with my breakfast, explaining it was for burying Fluffy in after I finished my eggs and toast. I already knew what death was. When I was eight, I spent nights crying myself to sleep, thinking about the fact that my parents, too, would have to die some day. My mother would put her hand on my back until the tears stopped, shushing me with “I promise” when I begged her to never die. She’d rub my cheeks in circles with her fingertips, saying, “I promise I’ll never die,” her expression showing she was considering something I didn’t quite understand.
I knew what death meant.
Still, I sat across from her at the kitchen table, hands tugging on the hem of my shorts, feet pushing my backpack towards the leg of the table. It was around noon and school had been let out for a half-day. I had been excited to go home, thinking I’d have the house to myself to play video games until my mom came home from work and made me help with dinner and do my homework.
She had a bag of BD-U100 insulin syringes on the table, next to her glucose meter kit and bottle of insulin. “You remember how to do this? If I need you to?” I nodded, and she pushed the insulin and the meter towards me. “Show me you can do it,” she said.
First, I took the finger pricker and used it to draw a dot of blood out of my mother’s index finger, pointed at me. She’d done this so many times that was hard to get enough blood to test; I squeezed her fingertip until it turned purple. I touched the test strip to the blood, stuck it in the meter, waited for a number to see how much insulin to give her. I pulled back on the syringe and waited for the insulin to fill up to one of the little lines on the cylinder. Mom pulled up her shirt, revealing black and purple bruises spotting her bulbous stomach. It was filled with fluid, I knew, over swollen her fatty liver and faulty pancreas. She had either told me in this odd “let’s talk about _____” sit-down style she liked to use or I had overheard her on the phone with one of her doctors. All the bruises were from previous injections. There wasn’t much unbruised skin anymore, so I picked a spot that was light lavender and stuck in the needle—holding it like a dart aimed at a perfect bull’s eye—and pressed my thumb against the plunger.
I could feel my mom watching through slit eyes, measuring my work. Usually she wasn’t completely conscious when I had to do this, so she wasn’t normally inspecting me. I felt self-conscious, knowing her eyes followed me as I put the orange cap over the needle and put it in the coffee can under the sink before sitting back down at the table.
I couldn’t help but wonder what this had to do with death. “You’re being weird, Ma. What are we doing?”
“What’s it called if my blood sugar is too high?”
“And when it’s too low?”
“Hypoglycemia. Diabetic shock. Mom…”
“I just wanted to make sure you remembered in case you need it.”
I shrugged. “Okay, but what are we doing?”
“I’m going to be home from now on when you get home. I’m not working anymore. I can’t.”
“No, Nicole Lynn. I didn’t quit. I’m going on disability now because I can’t work anymore.”
“Why?” This whole thing felt melodramatic, rubbing me the wrong way. Her sitting there at the kitchen table when I got home, her hands folded with all her diabetes things in front of her, waiting for me. The way she spoke in short sentences that didn’t really say anything. “Seriously, Ma. Quit it. What’s going on?”
“I got a call from my doctor today, Nicole. I need to go on the liver transplant list.”
“Okay. So what does that mean? What do we do?”
“We don’t do anything. I need a new liver, because with the one I have…they only expect me to live for five years or so. So, we just have to wait right now.”
Her time was marked at five years, and I don’t know if it was because five years didn’t seem like such a short time to me then or because I was just caught up in all the theatrics of it, but the timeline didn’t hit me. I didn’t realize what it meant. And besides, on those nights when I couldn’t help but cry, she had promised me she wouldn’t die. Not before me. She had promised.
death (English): The act of dying; the end of life; the total and permanent cessation of all the vital functions of an organism; extinction.
The word “dead” is fixed, its hard d sounds punctuating the term and making it stiff, solid. The same can be said for “died,” those d’s creating a barrier around the word so emotion can’t easily permeate. The words are finite. They mean one thing: no longer living. Something was once living and then was not. I could say she “passed on,” but that sounds like she just went somewhere else. I don’t know if I believe in a “somewhere else.” I just know she isn’t here with me. I could say she’s “not with me anymore,” but that could mean that she just walked out, got up and left, traveled to Europe like she had always wanted. It could mean she’s simply not at home and isn’t planning on coming back. That last part is both true and untrue. She isn’t at home, she’s not coming back, but not in a way that means she’s still around.
When a telemarketer calls asking for my mother, after the initial panic of deciding how to explain it, I always say, “My mother died,” or, “She’s dead.” It’s concrete that way, final, and the hardness of the words offers me a little comfort that I’m being understood. I almost like when they call, when I can say these things out loud so I can remind myself. I say this, they offer awkward condolences—Oh, I’m so sorry—and hang up. And that’s that.
Other people forget. Aunts, uncles, cousins: they take the day off for the funeral, get back to their lives the next day. A week later, they’re done playing catch-up. A month later, everything is back to normal. They keep living.
When I think about the word “death,” it’s a different story. Death is an abstract idea, an unknown to be grieved for and, more often than not, feared. Saying the word “death” is uncomfortable, the tip of the tongue caressing the teeth for the th. A gentle touch of sympathy for its user after realizing what it has to say—what it actually means. This is permanent.
I walked home from the bus stop, backpack slung over one shoulder, chin to my chest. I was brooding that I had to ride the bus with the middle-school kids even though I was eighteen and had just gotten my driver’s license. Mom needed the car to go to the doctor’s that day.
I walked up our sloped driveway to the back of our house. I plucked out my iPod ear buds when I saw my mother sitting at the picnic table on our back porch, looking down at her hands folded in her lap.
“Sit down, Nicole Lynn.”
No “let’s talk about___,” just “sit down.” I couldn’t sit down. Thoughts started running through my head. We’d slashed off three years of her five-year timeline already, and on any given day it was uncertain whether she was actually on the liver transplant list or not. In those three years her diabetes had worsened, her blood sugar levels bouncing anywhere between 90 and 500. Her fatty liver disease had progressed to full-blown cirrhosis. She’d been in congestive heart failure twice. Her lungs had filled with fluid, which made it hard for her to walk the length of our hallway without having to catch her breath. Her feet would swell like potatoes, lumpy and hard with dimples where the roots would have been. When her skin couldn’t stretch any further, it would break open like a split seam. Her kidneys were failing, and to top it all off, she had developed a lump in her left breast—cancerous.
Still, with all these things, the thought of my mother dying didn’t seem real to me. She’d been there every day for my entire life, and the thought of her suddenly not there didn’t seem possible. But while I didn’t believe it would happen, the numbers were in the back of my head. Five years given, three taken away.
I couldn’t sit. “What is it?”
She looked up at me, and I could tell she’d been crying. Her eyes were puffy, her face red and swollen—but not the kind I had gotten used to. “My brother died today. Uncle Robert.”
My mouth opened, something between a surprised gasp and a sigh of relief. The news wasn’t about her. “How?”
“Someone hit him. He was on his motorcycle. He wasn’t wearing a helmet.”
I should have been more shocked, maybe, but death had always seemed commonplace in my family. I’d been to five funerals by the time I was ten years old. They were mostly distant relatives, but I remember getting a new dress every time I had to give up my nightly cartoons to stare at a stiff person in a casket.
We had buried my grandfather—my mother’s father—two years earlier. My mother stood by the casket with her mother and siblings, shaking hands and giving hugs to the people coming to pay their last respects, offering their “deepest sympathy.” We all wore bowties from my grandfather’s extensive collection, one last memory for us to share of him. There was crying, sure, but we tended to go through more boxes of wine than tissues. We laughed, we sang. We took a group picture in our bowties. No one in the family offered their “deepest condolences” because we weren’t “suffering together.” Not my family.
At my uncle’s funeral, the casket was closed. There was laughing, I played M.A.S.H. with my cousin in the back of the room; there was an open bar outside. But something was different. My mother stood next to my grandmother’s wheelchair in line, her hands on my grandmother’s shoulders. They hadn’t laughed. I kept an eye on the two of them, sneaking glances as my cousin counted and crossed off words, playing the game—I was going to live in a house, marry Bradley Cooper, wear a white wedding dress—and my mother and grandmother never laughed.
I thought the two of them might be sharing similar feelings. My grandmother: stone-faced and grieving the loss of one child while confronting the loss of another. My mother: facing her own mortality in seeing her youngest brother’s casket. Maybe, like me, she had never really expected herself to die. Maybe when she was promising me she wouldn’t die when I was eight, upset about my guinea pig, she was promising herself, too. Did she even remember that promise? Me, her child, pleading to let me die before her, and now she was seeing on my grandmother’s face the sorrow that comes when a parent must put her child in the ground.
A year after that, my grandmother on my father’s side passed away. My mother bought me a black dress with roses around the trim. I wore that same dress to my mom’s mother’s funeral a year after that, and everyone was back to the laughing, wearing red—Grandma’s favorite color.
“I’ll tell you what,” one of my cousins said, holding his sides, turning to my mother, “our family definitely knows how to put the fun in funeral!” When we first got there, we cried. Then people showed up, and the smiles were pinned back up on our cheeks. I’m so sorry for your loss, but gosh I haven’t seen you in so long! Is that Nicole? She’s grown up so beautiful!
“How are you?” I get that question a lot. The thing is, even with all of my words to choose from, I don’t know how to express how I feel about my mother’s death. I can say I’m sad, but that seems too simple. “Devastated” might be closer, but there’s more to it than that. I might say relieved, but no one would understand that, and it isn’t quite right. If I can’t find the words, how can I answer?
It’s a hobby of mine to try to search for the words—words that don’t exist to me, at least not in English—to stow away in a mental dictionary so maybe someday I can answer. It’s a defense mechanism, my psychologist says. I look for these foreign words to help me “start the conversation” with myself. I use them to try to accept. I look for words I don’t know, can’t pronounce, will never use in an actual conversation because the words that I would actually use are too uncomfortable.
ya’aburnee (Arabic): “You bury me.” It’s a declaration of one’s hope that he will die before someone else, because of how difficult it would be to live without that person.
I asked my mother to bury me. I saw my grandmother bury her husband, then her son. One day soon I would have to bury my mother.
tatemae and honne (Japanese): What you pretend to believe and what you actually believe, respectively.
I pretended my mother would never die. I told myself I had infinite time with her. Or—at least the normal amount of time a child should have with her mother. I knew this wasn’t true. Time was running out.
nunchi (Korean): The subtle art of listening and gauging another’s mood.
I sat in the hallway, knees to my chest, listening to my mother cry. I didn’t have to look behind the closed bedroom door. After a few times, I learned to discern what her different cries were—small whimpers when she was in pain, wheezing if it was too hard to breathe, sobs if she was scared, chanting, “I won’t die, I won’t die” under her breath, like a promise.
desenrascanço (Portuguese): “To disentangle” yourself from a bad situation.
I couldn’t get sad; I still couldn’t believe she had so little time. I got angry, and I told myself she was faking. She said she slept all day because she was sick, but I heard her wandering the halls at three in the morning. I told her if she would just go to bed, she wouldn’t sleep all day, wouldn’t doze off while making dinner. My life revolved around her and her illness. I couldn’t get away from her, her sickness, so I got mad. I’d take her to her doctor’s appointments, radiation treatments, pharmacy runs. I’d hurry her along, yell at her for taking too long.
She had moved into the living room, and she never changed out of her pajamas except when she had to leave the house—usually only for a doctor’s appointment. The swelling in her feet crept up her legs, making her bloat out. It was impossible for her to wear shoes. She made a bed for herself on one side of the sectional couch, bunching blankets over the worn cushions and piling up pillows. I could hardly make it through the living room without tripping over extension cords attached to her CPAP machine or the green-tinted, see-through tubes of her oxygen tanks. And there were tissues everywhere, crumpled and thrown on the floor with brown mucus coughed up and spit into them.
I never wanted to go in there because the mess made me agitated, made me want to clean, but I would be annoyed at having to touch those disgusting tissues. I didn’t understand why she couldn’t throw her tissues away using the small garbage can I had bought for her to use in the living room. I yelled about it. After a while, with one year left, she yelled back and everything started happening so fast. I realize now that I was detaching myself from her.
ilunga (Tshiluba, Congo): A person who is ready to forgive any abuse for the first time, to tolerate it a second time, but never for a third.
Wilson’s Disease was her last diagnosis before she died, a condition in which her liver couldn’t process the copper in her system anymore. An excess amount of copper in her brain led my mother to a mental breakdown, and the subsequent rapid unraveling of any relationship we had left.
It was Christmas break during my sophomore year of college. I was getting ready to travel to South Africa to learn how to travel-write. The only Christmas present I got that year was a suitcase for my trip, but when I walked into the living room to start packing, there were still gifts wrapped and piled in front of the television.
I went into the garage to get some things I wanted, and after I closed the door behind me, I heard it open again. I turned and saw my mother standing there in just her bathrobe and bare feet, glaring at me. She had gotten the habit of following me around, paranoid that I was doing something shifty. What exactly, I wasn’t sure.
She stood there, staring, until I spoke.
“Mom, your presents are still in the living room. Are you going to open them or do I have to take them back?”
“Do whatever you want, Nicole Lynn. You’re so good at that.”
“What does that even mean?” She didn’t answer.
“So are you going to open them or what?”
“No, I don’t want them.”
I sighed, feeling my cheeks getting red. It was proving easier and easier to get angry with her the way she was then. “Why?”
“Because they’re not for me. They’re for his slut. I know it.” She was referring to the girlfriend she was convinced my father had—a delusion.
I pinched the bridge of my nose, leaning against my car for support. It had been like this for months, starting with angry phone calls in the middle of the night in my dorm, and escalating to her thinking there were cameras wired around the house so we could watch her every move. She ripped all the wires out of the wall and smashed every remote control with the hammer my dad kept in the garage, thinking they were transmitters or surveillance devices.
“He’s fucking a girl named Smiley,” she said about my father, standing in the darkened garage. “I know, I’m not an idiot. She calls from a blocked number all the time and hangs up. Well, I got that little slut’s number. I’ve been calling and no one answers. Bitch is probably too scared to talk to me. He stole my phone, too. My cell. Can’t find that fucking thing.” I couldn’t begin to imagine who she’d been calling.
“Did you look in your pocket?” I asked her, trying to stay calm. Last time “he stole her phone,” it had turned up in one of the pockets of her coat after it had gone through the washer. She always misplaced things like that.
“Oh, he’s got you so brainwashed.”
“Mom, stop.” I tried to turn my back on her then, but she wouldn’t let it go. Couldn’t let it go, because of the chemical imbalance in her brain, but I didn’t know that at the time. At the time I thought she was just having a mental breakdown, finally accepting her fate, being bitter about it. Then again, if I had known that she was sick then, thinking back on it, I can’t say I would have acted differently.
“You’re so brainwashed, Nicole Lynn. Can’t do or think a single thing for yourself. You just wait and see. Oh…wait and see…”
I twisted. “Wait and see for what?” I snapped back at her, reaching my breaking point.
“Just wait. I can’t wait until this happens to you, Nicole Lynn. I can’t wait until you get sick like me.”
“Do you know how stupid you sound right now?”
She stopped, looked surprised, then gritted her teeth at me, shaking her head, almost snarling. I had never seen her so angry before.
“I just want to pack. Go away, get away from me,” I said, feeling my eyes start to burn. I was used to it, mostly. But there were times when she was so nasty that I couldn’t keep my calm anymore.
“Yeah, go ahead and leave on your trip. I hope your plane crashes. I hope your plane crashes, and when they call me to tell me you’re dead, I’m going to laugh.” She turned and headed back into the house.
The image that I had of my mother at that moment—the memories of her taking care of me—was shattered. She wasn’t my mother, just a cracked reflection of someone who used to look like her.
mamihlapinatapai (Yaghan): A look between two people that suggests an unspoken, shared desire.
There were times when my mother would catch my eye, and I could tell we were thinking the same thing. We both wanted her to just die already. Get it over with.
schadenfreude (German): The pleasure derived from someone else’s pain.
That last year, my favorite times were when my mother was so sick she had to be hospitalized for weeks at a time. I’d leave to see her after dinner, getting out of doing the dishes because “I was going to go visit with Mom.” I would drive the twenty minutes from my house to the hospital, walk to her room, sit with her until she fell asleep ten minutes later. At this point, with just months left on the countdown, she was asleep more than she was conscious. I’d leave, drive the twenty minutes back to my house singing as loudly as I could in my car to whatever my favorite pop-rock song was that day.
If it was really bad, if whatever was ailing her couldn’t be fixed in a week or so, she’d be moved to a hospital in Philly. If she was in Philly, I wasn’t expected to make the three-hour drive to see her once a day. I probably only visited her once a week.
I loved when she was in the hospital. It was like a vacation.
arigata-meiwaku (Japanese): “Misplaced kindness.”
“Nicole doesn’t care about me,” my mother would say. My father told me she said this, and he would always tell her in return that no, that wasn’t true. Of course I cared about her.
I couldn’t help but wonder if he believed that, because I wasn’t even sure I did. I cared about the mother that I once had, the one who promised she would never die, who stroked my cheeks to get me to sleep. Not this one. I didn’t even know who this one was.
The night before she died, I yelled at her for almost feeding my dog a bay leaf when giving him leftovers. She apologized, shuffled back into the living room to her hospice bed and oxygen tanks. I went into the living room later, thinking of apologizing, wondering if I should even bother. She had started a new medication after she had realized one day how irrationally she was acting and called an ambulance to take her to the hospital. It felt like, for a second, I had gotten my mother back. In the end, I didn’t. This woman—feeble and ill as she was—still wasn’t my mother. At least not to me.
I heard her crying later that night and went into the living room to check on her. She was having bad leg cramps and asked me to call the hospice nurse. I dialed the number, handed her the phone, and called my brother into the room to sit with her. I had paused a video game and wanted to get back to it. The nurse came, gave her medicine, and sat with her until she woke me up at four in the morning to tell me she was leaving and that my mother was asleep.
When the nurse left, I lay awake in bed. I heard my mother get up, walk to the bathroom, go back to bed. I thought about getting up, seeing if she needed anything, asking if I could help. But I didn’t. I pulled the covers over my head, rolled over, went back to sleep.
The next morning, I woke to strobing ambulance lights in my driveway and voices coming from my living room. My dad was there, and so was the nurse from the night before. She had stopped by to check on my mother and found her the way she was.
Mom was lying in her hospital bed, arms and legs twisted in the sheets, her head flopped to one side on a pillow. She was gasping, gulping, choking, wheezing—anything to find air. Her mouth was opening as wide as it could to get as much air as possible. Her eyes were closed, as if she was sleeping.
“What’s going on?” I asked, as EMTs carried a gurney through the front door and got ready to move her to it.
My dad was standing next to her. He shook his head.
“Is someone coming with her?” one of the EMTs asked, a clipboard in his hand.
I nodded, not thinking. “I am.” I ran into my room and put on the first pair of clothes I could find. This was it, what we had been counting down to. I hadn’t been there for her the night before, the months before, but I could be there with her now. Right?
In the ambulance, I tried holding my mom’s hand as she lay half-conscious on the gurney, but in her lethargic, nearly comatose state, she couldn’t hold her arms on the side of the gurney and her hands kept falling to the floor. I cupped her elbows in my palms, my body towering over her, her hands folded over her bloated stomach. I wished then that I could glue them to her sides.
I sat in the hospice room with her as she lay, gasping. “You okay, Ma?” I asked every once in a while, to see if she could still hear me. She opened her eyes a sliver to respond, but she could only gurgle. This is it, I thought. This is what we’ve been waiting for.
saudade (Portuguese): The feeling of longing for something or someone that you love and that is lost.
I wasn’t crying at the time, and didn’t actually cry until she passed away a few hours later, I think because of the half-perception I had of her. She was the one to rub my cheeks when I couldn’t sleep, but she was also the one who told me she would laugh if I died.
Sitting there, I did what I was supposed to do. I brushed the hair out of her eyes. I kissed her forehead. I held her hand, told her it was all right. I didn’t know if I was doing this for the person I remembered my mother to be or because it was a kind thing to do for a dying person. She was my mother, I loved her—but it was more complicated than that. “Love,” in this case, didn’t mean what it should have. This was not a feeling of deep attachment holding me at her bedside. It felt more like obligation.
It rained the day of my mother’s funeral, poured cats and dogs. That phrase is another prime example of why some words just don’t make sense. There were no cats and no dogs falling from the sky—though sometimes I wish there had been. Then maybe it would have been as ridiculous as it felt. But there was no absurdity like this, the way I felt, just giant raindrops. Raindrops big enough to fill the canvas tent covering my mother’s grave, weighing it down so that it bent low over the open earth, creating a waterfall over the sides that my cousin had to run through to lift the canvas up and empty the water so that the pallbearers could fit the casket in. Raindrops big enough to slap off the roofs of the processional cars, bounce up, slap again. I’m just twenty years old, the clock’s reached zero, and I have no mother.
I sat in the car, tissues tight in my fist, wondering, If it took five crumpled up Kleenex to wipe away my tears, how many would it take to dry myself off from this rain. I thought to myself: I can’t write about this. It’s too melodramatic, this rain.
melodramatic (English): I am crying, it’s raining, and my mother is dead.