My mother became my daughter when I was nine years old. There had been an accident, a car accident, and it was a bad one, although I didn’t know that yet. My heartbeat quickened when I rounded the corner onto our street and noticed that the creaky, rusted out Dodge we couldn’t afford to keep gas in wasn’t parked in front of our crumbling apartment complex. Permission to walk to and from school had been hard won; my mother was careful with me and overprotective in the extreme, resulting in a young girl who was incredibly naive and grossly underdeveloped emotionally. I wet the bed, I cried at the slightest provocation, and enertained myself with a steady stream of fantasies and daydreams, rarely connecting with the outside world. We made a deal: I could walk myself home from school if I promised not to dawdle and play along the way, and if I wasn’t on the threshold of our building by 3:35 she would get in the car and come looking for me.
I didn’t wear a watch, because watches are for grownups, so I broke into a run, thinking I might be able to catch her before she got too far away and my newfound privileges were revoked for good. But I hadn’t even stopped at the corner store for candy! I didn’t roll around on the ground with that puppy down the street like I’d wanted to! How could I possibly be late? Maybe her clock was set faster than the one at school?! There was no sign of the car in either direction, so I turned around and dragged my sorry ass home, savoring what was sure to be the last few minutes of freedom I was going to be granted for the foreseeable future.
I found her standing in the kitchen sipping a cup of coffee, the instant kind you mix with hot water that came in a gallon-sized drum for $2 at the dollar store and smelled like cat pee. One side of her head was bandaged, and there were some cuts on her face. She explained that she’d fallen asleep while driving and had been blindsided by another car. My mom hadn’t been wearing a seatbelt and was thrown across the front seat, smacking her head pretty hard against the rearview mirror in the process. There had been an ambulance, and a trip to the emergency room. The Dodge was totaled. All while I was working on my stupid spelling worksheet.
I had been her first accident, or so it seemed to everyone but my parents. It just didn’t seem logical to anyone of sound mind that two people rapidly degenerating through middle age down a sharp, slippery slope into the pit of senior citizenship would make the choice to have a baby. Why not get another dog? her friends asked. Maybe you guys could travel? My father, at fifty, had recently survived his second heart attack; and my mother, ten years his junior, had been diagnosed with multiple sclerosis four years prior. But remission is one of those magic words, one of those words that makes anything seem possible, and once her neurologist uttered it she decided that it was time to have a baby. The obstetrician warned her against it, saying I would surely be born with Down’s Syndrome or some other form of mental retardation. He pointed out that she wasn’t in the best physical condition, that pregnancy and childbirth were going to further ravage a body that was long past its childbearing prime.
The day after the accident started out like any other. I had the day off from school courtesy of Casimir Pulaski, and to show my gratitude I kicked the covers off and bounded out of bed early to get a jump on my cartoon-watching and cereal-eating. My mom was generally an early riser, up at five every morning even though the progressing multiple sclerosis had forced her to retire a couple years before, but she was sound asleep next to me. I assumed she just needed to sleep in, that she wasn’t up yelling at me to take a bath and put real clothes on because the accident had worn her out, made her more tired than usual. I tiptoed out of the bedroom and went to fill a salad bowl with cereal. I sat on the couch in a Cinnamon Crunch coma until the cartoons gave way to boring talk shows, which reminded me I still hadn’t heard a peep out of my mom. She was sitting on the side of the bed we shared, eyes unfocused, drooling and unresponsive.
A childhood that began with a sort of cautious optimism quickly devolved into absolute horse shit. My father was an abusive alcoholic, a man tormented by the demons he’d brought home with him after fighting the war in Korea. He’d tempered his rage for most of their marriage, but after two failed stints in rehab he gave up and caved completely, drowning himself in liquor and taking his anger out on everyone around him. My mom and I left the idyllic three-story home into which I’d been born when I was four and shared one shitty Section-8 apartment after another with mice and roaches, relegated to survival on food stamps, Social Security, and other forms of government aid. She could no longer work thanks to her rapidly deteriorating body and brain, and spent most of her waking hours smoking cigarettes and gambling away the little bit of money we had on lottery tickets.
I went next door to get the neighbor because we never had enough money to keep a phone on. I should explain that I grew up in a wealthy, progressive community. That, while there were these pockets of poverty and tragedy scattered throughout our town, my experience didn’t mirror those of the majority of my classmates. That I was expected to keep my fucking shit together, and learn the goddamned state capitals, that I was expected to grasp the concept of halves and thirds while terrified that my mom was going to drown in the bathtub. I didn’t yet understand the difference between God and the President, yet I knew which pills go with breakfast and which ones were taken after dinner. I went to sleepovers without a sleeping bag and marveled at my classmates’ novelty pillows and Jem paraphernalia. They had fathers at home and multi-car garages and college funds and MOTHERFUCKING TELEPHONES, and here I was hurtling up and down three flights of stairs desperately pounding on doors that wouldn’t open because normal people had jobs. Healthy people actually left their apartments during the day to venture out into the world and accomplish real things. Finally one of the doors creaked open, and I breathlessly tried to explain, using my limited nine-year-old language, that my mother had a disease in her brain and had been in a bad car crash and now couldn’t answer me when I asked her if everything was okay.
I sat in the waiting room with the kind of faceless authority figure who sits with your child when you are her only person, in my pajamas: milk spilled down the front, urine staining the crotch, reading Harriet the Spy and completely unaware of the major shift occurring beneath the tectonic plates of my life. There was a blood clot in her brain, at the site of impact, and the doctors had to shave her head and crack her skull open to get it out before it ruptured and killed her. And they did, which was a kind of a little miracle.
I brought my baby home from the hospital a few days later, swaddled at the wrong end, head and neck wrapped in thick white gauze and cotton pads. A long red, angry-looking scar snaked the left side of her forehead over her ear and coming to an end at the base of her skull. I would learn over the course of the days, weeks, and months to come, how to mask how much I was hurting. How to hide how badly we were struggling to survive from the nosy social worker the teachers kept sending to pull me out of class, the man in the ill-fitting suit who spoke to me in his most gentle inside voice while silently judging my missing socks and uncombed hair. The woman who used fancy words to try to trick me into admitting that my home environment was unsafe, that I was living with a person who could no longer properly take care of me. She pushed me to betray a woman trapped in a baby body she couldn’t use who had done nothing but love me and try her hardest to make me feel special. She pushed me to admit I had no idea what abandoned building my father was currently drinking himself to death in. Didn’t this bitch know that I was stressed the fuck out? Wasn’t it clear I had been up half the night changing my mother’s diaper and helping her into and out of the bed, and that’s why I couldn’t stay awake in science class? Yes, social studies is boring, but that isn’t why I’m not paying attention; I’m thinking about how I have to run to the currency exchange when school lets out to make a Com Ed payment so our lights don’t get shut off again. Will the nice dude who works at White Hen be there today? He knows the cigarettes aren’t for me, he won’t give me a hard time, and maybe I’ll have enough left over for a Snapple since I didn’t use my milk quarter at lunch today. No, I didn’t have time to do everything in my goddamned homework packet, dudes. I have a lot of shit on my mind. Don’t you know I have a baby at home who is depending on me?
Here is how multiple sclerosis is explained to you when you are a young child: “Okay Samantha, I want you think of your brain as a series of wires. Can you picture it?” I remember wanting very badly to impress the neurologist because I needed him to understand that I was totally responsible enough to be in charge of my baby’s care, even though I peed the bed the last three nights and cried in the bathroom when no one had anything nice to say about my diorama, so I nodded assuredly. “Now, this disease your mommy has is called multiple sclerosis.” He waited while I repeated it back to him. “And what it does is it attacks the coating on those wires. It just eats it up, like candy. Right now it’s working on the wires that control Grace’s legs, and that’s why she’s having trouble standing up and walking around. And eventually it will eat the coating on her arm wires, and her talking wires, and her thinking wires.”
It had been two years since the brain damage left behind by having her head cracked open had accelerated the aggressiveness of the MS, rendering her basically an invalid who never left the squalor of our tiny apartment. I watched her pushing a borrowed walker around his office, her brain a makeshift arcade that housed only an outdated Pac Man machine. Chomp chomp chomp chomp. She bumped clumsily into the chair I was sitting in. Chomp chomp chomp. High score.
I had to get my fucking shit together. It didn’t take long for me to realize that the worse I did of keeping myself clean and getting myself out of bed to get to places on time and finishing my assignments by the time they were due, the more frequently my day was interrupted by various school authorities demanding to know who was in charge of my care and why they were doing such a shitty job. I knew that if I wore the same underwear for three days someone would notice how I smelled and alert the teacher, or that if I put my head down for more than a second I would have to explain to the principal why I was so tired all the time. So I stopped.
We lived like college kids: ramen noodles, cheap hot dogs, instant coffee, grape Kool-Aid. I was responsible for the shopping, which I did every week at the corner store down the street from our newest place. We had moved again so that we could be closer to the fire station, because there still wasn’t enough money for a phone, and I might need to run down there in the middle of the night and get help. There was a bench for sitting and a bar installed in the shower, and a raised toilet seat to make it easier for my mom to do things for herself during the day while I was at school. I had been taking piano lessons since I was four, and we finally had space for a piano. I didn’t even know Mom had been putting money away, but I came home one afternoon to find an upright that was easily nine hundred years old about to collapse in itself in the middle of the living room, and she was so happy, thrilled to death and so fucking proud that she was able to be the mom again that it nearly broke my heart. I played an entire book of Bach concertos while she listened with her eyes closed and tried to move along with the music.
Most people get fifty or sixty years of life to prepare for what I was struggling to cope with after only eleven: Did Mom eat today? Is it okay if I leave the house for more than an hour? Will she remember to take her pills at the right time today? What happens if she tries to leave the house again? And I had to balance this shit against equally important issues like, How badly are they going to make fun of me for wearing fake Keds? Do I have the right Trapper Keeper? What if that boy in band finds out I have a crush on him?
You don’t just get to withdraw from your child life while making sure your disabled mother doesn’t set the apartment on fire because her fingers can no longer close firmly around a cigarette. There is no “opt out” button on adolescence. I would divide myself into two people: the happy, smiling person who needed to make friends and appear to be having a well-adjusted childhood during the day; and my mother’s mother and nursemaid and caretaker and friend at night.
It’s my fault she was taken away from me. I was selfish, and I failed her, and I remain haunted by that to this day. It was my first year of high school, and I so desperately wanted to have some semblance of normalcy in my life. It was palpable, this dull ache of yearning. I was tired, and my life had never been my own, and I wanted so badly to just do the things that other kids got to do. My suicide note was brief, one big weak apology, and I left it on my desk and took as many of her pills as I could. I just kept swallowing and swallowing them until I couldn’t anymore, and then I lay down in my bed and passed out. My little baby was so sad when she found me, called to motherhood this one last time, and she woke me up and poured baking powder mixed with hot water down my throat to make me vomit. She couldn’t walk down the block to get me an ambulance, and I was too sick and embarrassed to go get my own, so I got in the shower and threw up down the drain until I felt empty. That was on Saturday, and the following Monday I got up early to go to school to rehearse with the jazz band before first period. After the final bell rang I hung out with some friends, doing nothing, even though I knew I should get home to make sure my mother was okay. But I resented her, I resented these constraints that were locked tight around what should’ve otherwise been a 13-year-old life of fun and freedom. So I took my sweet time.
My daughter was lying on the floor just inside the door. She had fallen nearly twelve hours before, trying to make her way from her chair in the living room to the bathroom a few minutes after I’d left to get the bus. She was lying on her stomach in a sickening pool of her own waste, voice hoarse from spending hours calling for help, eyes red and out of tears. I tried to get her up, because she pulled me to the floor and begged me to, because I’m sure she knew that this was the end, that our jig was about to be up, that if I couldn’t get her up and into bed that finally someone was going to come and take away her baby. And I tried to, I really did, I got down on my knees and slipped and slid in my baby’s urine and feces, trying to figure out an angle at which I could prop her up so that I could slide something under her and get her to her feet. If only we knew our neighbors better, if only I could call someone to help me, if only I hadn’t been a selfish fucking bitch who thought it was more important to hang around the park with this group of idiot popular people who were all completely oblivious to my existence than it was to get home to my mother four hours earlier than I did, maybe this would have turned out a different way. I could feel the plates shifting yet again.
I couldn’t get her up by myself no matter how hard I tried, and her leg wires had been completely destroyed, leaving her helpless on her own behalf. I dropped my backpack in the hall and tore down the street to the fire department, tracking Mom’s shit the length of the sidewalk. I threw my shoes into a garbage can on the street as I watched them bring the gurney down the short flight of stairs that had been one of the major factors in our choice of this particular building—that and the landlord’s acceptance of rent vouchers. She spent a week in the hospital while people with clipboards and stern faces made decisions about what was going to happen to this child I had spent the last four years caring for and, for that matter, what was going to happen to me. Like most concerned mothers I slept in the lounge chair next to her bed, waking up every few hours when the nurse came in to check my baby girl’s vitals. I tucked the blankets in around her after they messed them up with all of their blood pressure checks and blood draws, filled the pitcher with ice chips from the kitchen area on the other side of the wing, pressed the call button when she needed another injection of pain medication and couldn’t reach for it herself. I was her only person.
For the five years that it took my daughter to die all I could think about was how I’d do anything I could to take her place. That life had dealt this lovely, gentle creature a bad hand she’d done nothing to deserve, while I hadn’t done very much with the handful of years already under my belt. I wasn’t pretty, I wasn’t very good at much other than the piano. Why not give her the rest of these years to do something with? It was excruciating, watching what had once been a vibrant and beautiful flower wilt and dehydrate in slow motion. I had to take three buses after school to get to the nursing home she was placed in, and I did so as often as I could while trying not to fail out of high school, writing her name in black Sharpie on all of her rapidly disappearing belongings, making sure that her pillows were fluffed the way she liked them, and painting her nails red even though they always got chipped during occupational therapy. I brought her bags of jelly beans from the gas station and talked to her about all of the kid shit I had been too busy to get around to before: boys I had crushes on, the chemistry teacher I hated with the fire of a thousand suns. But who gives a fuck about my floundering GPA when I can’t be there to stop them from hitting her when she doesn’t move fast enough? Who gives a shit about how terrible the cafeteria food is when she can’t stop my foster family from mistreating me?
Fourteen years have passed since the day I sat at the foot of yet another hospital bed, watching the morphine that would end my mother’s life drip slowly into her arm, robbing her first of consciousness, then of breath. My father had been found dead and homeless, frozen in the street, six months before. Fourteen years since the doctor said that the lung infection was going to kill her in a matter of days anyway, that between the MS and the dementia at fifty-five years young this gaunt skeleton whose skin hung from her skull like wet laundry was a shell of her former radiant self, and at that point it was obviously the most humane thing to do. My mom had worn dentures her whole life, because she’d been severely abused as a child and had never been given milk, causing all of her adult teeth to rot and fall out of her head by the time she was in the eighth grade. She never went anywhere without them, not ever, but sometimes before she tucked me in at night she would take them out and grab her cane and pretend to be the witch in Snow White until I was laughing so hard I couldn’t fall asleep. After she was pronounced dead the doctor removed her teeth and set them in a pan on the bedside table before they wheeled her down to the morgue, and as I leaned over the side rail to memorize her face one last time, it only then occurred to me how without them she didn’t really look like a witch, she mostly just looked like a baby.
What can you possibly do with the rest of your life when this is how it begins? Who am I supposed to be? When do I get the manual on how to be an adult, or what everything means? How am I supposed to build a life on the wreckage that is this foundation? How can I be sure those plates won’t shift?
Children should never die before their parents.