This is the story of the day I lost my mother and the months leading up to it. I have never shared this story for fear of remembering. However, it has officially been ten years and two weeks since her departure and in honor of the completion of this ten year, cancer season, the launch of eclipse season and the new moon, I have decided to confront my fear of remembering and ask those that I love to begin bearing witness. This is not where the story begins and it’s ending is far from written, but this chronicles one of my rawest wounds. One that, after ten years, has yet to fully scab over. I never expect these wounds to fully heal without jagged scars, I know I must learn to live with them as part of the skin I wear. I hope that by finally letting this story out into the universe I might begin to wear my skin with more pride, less shame.
This is a step in my evolution.
Thank you for joining.
In June 2008 I was a bright-eyed, seventeen year old, high school senior. A small town girl with big city dreams, I was gearing up to graduate and move to Los Angeles for college in August. My mother’s only child and my father’s much younger third, I was raised in a quiet town nestled on the northern California coast overlooking the roaring pacific. Most of my friend’s and I found it incredibly boring and couldn’t wait to leave. We would soon be scattering across the state and country, seeking our fortunes elsewhere. I had a brief window of opportunity to drag out the last of my goodbyes to the chosen family that had gotten me through the last seven years. We had met in the sixth grade and by senior year they were the siblings I never had. We were determined to spend as much time together as possible in those last few weeks. As much as I wanted this to be the only thing on my mind that last summer of innocence, it wasn’t that easy. By June 2008 my mom had been in the hospital for three months, forcing my dad to relocate to Sacramento be closer to her. Because of this, in all my moments of enjoyment there was a dark cloud of concern and a deep foreboding loneliness. My entire existence was changing too quickly and there was nothing for me to hold onto. However, having taken theater all four years of high school I knew how to put on a brave face and pretend like I knew what I was doing in all that chaos.
In the three months between my mother’s March hospitalization and my June graduation, I had missed every Monday of school. Family and family friends were tasked with either driving me from our little town of Fort Bragg, California to the Foster’s Freeze in Lake County, from the Foster’s Freeze to Sacramento, or visa versa. I hated being shuttled back and forth. I hated spending my weekends at a hospital. I hated Foster’s Freeze. I just wanted things to be normal, but instead I was living a semi-normal high school life four days a week, sitting next to my mother’s hospital bed two days a week and spending at least one day a week eating soft serve. Normal was never in my stars.
So far in the month of June my mother had seen several improvements in her health. I held out hope that someday we would all just pretend like this never happened. I knew she wanted me to enjoy my last months of the first chapter of my life. I knew she never wanted me to leave her bedside. I was selfish so I chose her desire that best aligned with my own: enjoying my summer.
After graduation in early June I had only gone to Sacramento once. I had seen with my own eyes the little ways she was improving. I thought we were on our way out of the darkness.
On June 26, 2008, I woke up at my best friend’s house, her mother gently touching my shoulder.
“Eliana, you need to wake up, something is happening with your mom. I’m going to take you to the Turners and the Loudons will be taking you to Sacramento.”
Half-asleep, yet aware, I responded “What happened?”
“That’s all I know for now, you’ve got to get up, we have to go.”
I stepped away from my body. I watched myself mechanically change out of my pajamas into the only change of clothes I had with me. I watched myself walk down my friend’s staircase and follow her mom outside. I watched myself climb in the backseat of their mini-van. I wondered what my body felt like, going through the motions, while I was suspended, unsure of how to process the unknown when I knew it wasn’t good.
We arrived at the Turner’s and I climbed the familiar brick stairs and opened the front door without knocking, second nature after living there for the last few months.
My friend B and her family (the Turners) had unquestioningly taken me in after my parent’s sudden departure. Ever since my mom’s illness had taken a turn for the worst during spring break and she had been hospitalized while we where in Maui on vacation. The Turner’s love for me was palpable and possibly one of the only things that got me through those difficult months of depressing hospital visits and terrible soft serve.
Hospitals were not new, but I never learned to hate them less. My mom had been sick for years, but doctor’s had yet to find a reason or a cure. It was lyme disease. It wasn’t lyme disease. It was breast cancer. It wasn’t breast cancer. And on and on until she stopped telling me and I stopped asking. False hope is heartbreaking.
My father had woken me up three months ago, standing in the doorway of our condo stating in a collected tone “mom is having trouble breathing, I’ve called an ambulance.” It had been three months since I rode with her in that ambulance to the hospital, holding her hand and trying not to register the fear in her eyes as the paramedics lifted an oxygen mask over her face. Three months since she was airlifted to UC Davis Medical Center’s ICU unit. Three months since my father and I had flown to Sacramento in silence, arriving just in time to watch her unconscious body be wheeled from the helipad into the unit. Three months since they had intubated her, carefully cutting a hole into her throat to control her breathing. Three months since I had heard her voice.
I graduated in those three months. My dad was in the attendance. My mom was not. There was no way she could have been. My dad was only in town for the day. This was before FaceTime and Skype, so even if he was exhausted and anxious, he had to go. He was all I had. I smiled and acted like I was totally ready to receive my diploma knowing my mom was hooked up to a million imposing machines 193 miles away. I coped by pushing the facts of my life as far out of my mind as possible. I focused on what was right in front of me: fitting into the black and white floral print dress I was wearing, straightening my hair, applying a thick layer of concealer to all of the places my acne gave away my internal tornado of emotion, congratulating friends, distracting myself with their congratulations in return. By all outward appearances I was unaffected.
On that foggy Wednesday morning in June, I arrived at the Turner’s to find our family friends Brenda and Alexis (mother and daughter) Loudon were waiting to sweep me away to Sacramento. Well, technically Folsom, my mom had been transferred from UC Davis to an outpatient hospital in Folsom about three weeks earlier after her undiagnosed illness was finally diagnosed: Amyloidosis. A cursory search will show that there is no cure for this rare disease which causes the body to produce amyloids (abnormal proteins) that are then deposited into the bone marrow and organs eventually causing organ failure. I tried my best to deny the truth when I was told my mother was doomed to be attached to these machines for the rest of her life, like sick umbilical chords keeping her alive and confined. I tried not to think of what the doctor mean then he said “the rest of her life.”
Today, something worse than “no cure” or “the rest of her life” seemed to be on the horizon. As I loaded in the car with Brenda and Alexis I was still unclear of what was happening. It seemed as though I was not alone in this confusion, the Loudon ladies had no further information to give me. We were all rushing to find answers.
It takes four hours to drive from Fort Bragg to Folsom. Four long hours on winding roads that lead you deep into a forest, up a mountain, through a valley, around a lake, and down the arterial interstate-5 until you finally reach the 50 that deposits you in the city famous for its state prison. For four hours I was unclear of what had happened to my mom, I just knew we had to go. This time there would be no stopping at Foster’s Freeze. There would be no stopping at all. We flew in silence across the state.
When we arrived Brenda and Alexis–both registered nurses–sprung into action. I held back. Did I want to know? I had to. I slowly climbed out of the car and walked towards the waiting room. Passing the exact spot on the sidewalk I had sat with my mother only one and a half weeks ago. I sat in a folding chair next to the elaborate contraption she was strapped to so that she could be wheeled outside, tubes and all. I remembered watching her smile as she basked in the sun for the first time in months. Finally showing some progress towards going home she reveled in her ability to breathe fresh air and feel the warmth of the sun on her skin. She couldn’t talk, but I could tell she was determined to get out of that place. It was the little things. I could have stayed forever in that moment, watching her sit there with her eyes closed, a smile brightening her face, her frail fingers holding my hand. But I didn’t stay. I left to go back to Fort Bragg the next day. I had places to be.
That moment in the sun would be the last memory I have of my mother’s smile.
I don’t remember if my half sister came outside to talk to me, or if I actually made it to the waiting room before I heard the news. I’ve blocked out all recollection of her explaining how, exactly, things had changed so quickly, even though it lead to a medical malpractice turned wrongful death suit in which I had to give my first deposition. I only remember six words:
“Your mom is in a coma”
The feeling of the Earth collapsing in around me.
It had happened sometime that morning, before I had been woken up, before I had spent four hours traveling only to find out my mother’s smile had been snatched from her lips.
My dear sister, twenty-five years my senior. She has children my age, it must have been so difficult to break this news. To break my heart.
To enter the hospital you had to walk through a set of double doors into a glass room with cushioned benches lining the glass walls. To get to the lobby you enter through another set of sliding doors. My father and aunt were in the glass room conversing with Brenda and Alexis by the time I made it in the first set of sliding doors. My sister went to join them. Assuming my input irrelevant, I didn’t want to interrupt. I turned to my left and slumped onto one of the benches. I was alone, inside the same room, but outside of the circle of critical information, there had always been issues with figuring out how much I should know.
I watched them reach some agreement as Brenda and Alexis turned on their heels, stomping through the second set of sliding doors. From what I gathered they were going to demand answers. I envied their bravery.
“Do you want to see her?”
I looked up to see my sister standing above me, looking tired and forlorn.
“Sure” I shrugged. How much worse could it be? I thought.
I had no clue.
My sister lead me through the second set of sliding doors into the lobby, past the reception, to the left and down a long hall. We eventually got to a room with double doors, much like the double doors into the lobby. We went through the first door. We arrived in a room where we were asked to put on those full body suits that keep our germs in and the hospital germs out. Respiratory mask and gloves included. We walked through the second door. There was one nurse at a station in the middle and eight beds with their heads along either wall. How many other dying people were in the room, I couldn’t tell you. I can only speak to the way we moved through the space in slow motion, the air as thick as molasses, towards the bed in the far right corner.
I had assumed that being in a coma meant that she would be still, lying peacefully in her bed with all of her tubes, like when she had been heavily sedated in the months prior so that she could be spared some of the pain of her body shutting down. I was wrong. This was not peaceful. Instead she convulsed on the bed, her eyes rolling back in her head, her tongue lolling out of the side of her mouth. Her hands grasped tightly to nothing as her body shook with spasms. I wanted to climb into the bed next to her and hold her still, singer her lullabies and kiss her forehead. I wanted to run away.
I was frozen, unsure. Was this really my mother? The one who was basking in the sun just a week and a half before? Of course it was, of course. I reached out to touch her cheek, my sister gently touched my hand.
“We’re not allowed to touch her”
If I couldn’t touch her then how could I save her? How could any of us save her if she doesn’t know we’re here? I wanted to scream. I wanted to cry. I wanted to yell at my sister “But she is my only mother! I am her only child! How can you keep me from holding the only person who ever held me?!” But instead I retracted my hand, choked back my tears and helplessly watched my mother writhe for a moment longer before turning away and asking to leave.
The slow walk back down the isles of beds, as I left my mother fighting for her life on a sterile hospital bed was one of the longest of my life. Open the first door. Take off our hazmat suits. Open the second door. Slow walk back through the sliding doors and back into the glass room, the perfect display case for a portrait of a miserable, grieving family.
The rest of the day was an exhausting blur. There was not a doctor on site to help with my mother or sign off for her transfer back to UC Davis. She was in this mess because of a particular doctor who had convinced her to try an experimental treatment. She wanted to come home so bad she was willing to try anything. That doctor never showed up to explain to the family what she had convinced my mother to try. At least not while I was there. I never saw her.
How could you leave someone in that condition and not have the decency to own up to your mistake? I thought. For the first time in my life I understood murder to be a crime of passion. The longer we waited with no response the more I envisioned how I could end her life in a way even remotely as violent and traumatic as the means she had just used to end mine. I didn’t consider that killing the doctor would not bring back my mother. I just knew it would make me feel better.
She never showed up, anyway. No Folsom prison for me.
After hours of sitting in that glass room, watching the adults congregate, separate and congregate again the hospital’s one other doctor arrived in a flurry. He had a clipboard in his hand as he exited his car and stumbled into the glass room we seemed to have claimed for ourselves. We bore down on him. Of course my father, sister and aunt along with Brenda and Alexis did all the talking, but I played my part, I sat in the corner, on the same bench to the left of the door, watching his every move, my rage silencing the explanations spilling from his lips. He looked like a puppet, sent as the mouthpiece of words he didn’t believe in, he played his part well. I imagined my eyes shot lazer beams and with one blink I could cause his cranium to explode, leaving only a cloud of soot and a pile of ash remaining. I practiced these mental death blows until he told us the ambulance was on the way, my mom would be transferred back to UC Davis. She never should have left to begin with.
The doctor disappeared again.
I watched for the third time in three months as my mother’s body, strapped to a gurney, was wheeled towards an ambulance and disappeared inside its doors. My body moved of its own volition as my sister guided me into her mini-van and drove me to her house, assuring me that if anything changes I will be the first to know. It’s time that I get some rest, she tells me, it’s been a long day.
At her house I curled up on the futon in the back room. Back in the same position I had started my day, only this time everything was different. My mother was gone. That women on the bed, on the gurney, disappearing into the ambulance, she was a shell of who my mother was. A body who’s soul had stepped out on vacation. Why would she leave me? I wondered. I continued to swallow my tears, if I didn’t let myself cry maybe I could convince myself it wasn’t real. I rolled over and tried to push down the thought: Why would she stay?