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February 22, 2015

There is a scar that runs the entire length of my left arm, wide and treacherous at the elbow, then narrows to a thin white line as it cuts across my palm.

I was eight and running on the way to a baseball game with my father when I fell on some rocks in the parking lot. He slung me over his shoulder and carried me to the first aid station. It wasn’t until I watched him throw his blood-soaked jacket into a trash can and looked down at my arm, the bone popping out at the elbow, that I realized how hurt I was.

In October 2013, I was 30 years old, sitting on the floor of my room in my house in Portland, folding laundry, when my mother called to tell me she had pneumonia. I absent-mindedly folded a T-shirt while I asked her if she was drinking enough liquids.

At the time, I worked with seniors and was dating a Director of Health Services so I was well versed in the logistics of dehydration.

“No, you don’t understand. I’m in the hospital.”

I didn’t understand. My mother was 69 years old and had just returned to New York from an Alaskan cruise with my father, with a short stopover to see me in Oregon. She was an adventurer who had married an Air Force man and lived all over the world, including Germany, where I was born.

She was a happy woman who explored every inch of nature, often times on her motorcycle. While my father and I were always breaking bones, falling out of trees, and electrocuting ourselves, my mother stayed healthy, our perpetual caretaker. I did not understand why a cold would land her in the hospital.

From the freshly folded piles around me, I started sliding T-shirts and underwear into my rucksack, the one I had used for my own adventures in the world, while I told my mother I would book a flight. She laughed and told me it was just a cold and I didn’t need to come.

Luckily, I’m not the type of daughter who has ever listened to my parents so I was on a flight two days later, armed with a stack of magazines and my then-boyfriend’s helpful hints about dealing with hospitals.

On the flight, I talked to the man next to me, a professor, about his students and his daughter. I was cheerful. I didn’t understand.

I have been nearly everywhere, but I grew up in Syracuse, NY, the same town my mother was born in. It’s a town that isn’t that bad, but in my mind it is still a place where mercury poisons our lake and where most of my family and friends have struggled with or succumbed to cancer. My mother lost her sister to cancer; she was just 47. Her brother survived his bout.

When my plane touched the ground and my phone clicked back on, I already had a message. It was from a doctor I had never met or spoken to telling me they had just moved my mother to the ICU.

I was panicked when I met with my father, who awkwardly hugged me as we pushed my rucksack into the trunk of my mother’s Prius. As we passed the trees and power lines that make up the familiar horizon of my home town, I talked. I asked my father what had happened. I didn’t understand, I said.

She only had a cough.

In that white room with a curtain for a door, my mother was jaundiced, her skin wrinkled like someone had taken a yellow legal pad and crumpled each sheet up and then tried to mash it into the shape of a person. I tried to take control of the situation, like I knew how, like my job had prepared me for, like how my boyfriend, with his BA in nursing, had talked me through.

I asked my mother how she was, what she needed, what I could do. She told me she didn’t know. She told me to wait for the doctor, that I could ask him. She told me that they were running tests.

Tests. The vast medical mishaps that had brought us here, an entire chain of terrible choices made by her regular doctor who dismissed my mother’s pain first as “old age” and then begrudgingly sent her for lab tests. Those tests were never done because when she showed up, the lab guy turned her away, stating, “You are allergic to iodine, I can’t perform this test. He needs to order you different lab work. How did he not notice that?”

And then her doctor, possibly annoyed with my persistent mother, over the phone prescribed her antibiotics for a urinary tract infection. After that course, still pain. So more, stronger antibiotics. Still pain. Another course of antibiotics so harsh that their names made my boyfriend wince as I recited them over the phone.

He told me he had never heard of them being given to someone not already in the hospital, being constantly monitored: They were too strong, they should have never been given. And then her body shut down. She drove herself to the emergency room, not wanting to bother my father. She didn’t understand what was happening either.

Her liver was failing and no one knew why. They suggested a transplant. They ran tests. Her lungs were filling up with fluid. They ran tests.

She pleadingly asked me if she should let the nurse give her a catheter. She wanted me to say no, to protect her from the indignity, but I knew in a short while there would be so many people in that tiny, door-less room that she would have no privacy for the bed pan. I held her hand and told her, it will only hurt for a minute and then you don’t have to worry about it anymore. She said everything hurt, that I had no idea.

The tests came back. The doctor had a sullen look on his face. He was sorry. She couldn’t have a liver transplant; she wasn’t eligible. She had cancer.

Every single organ in her body had tiny black dots of cancer, but especially her liver and kidneys. The liver and kidneys they had pumped so full of highly toxic drugs to cure a urinary tract infection that she didn’t even have.

I finally understood and I wanted to scream, but at who? Not the kind nurse who was helping me find a private room for my mother to die in. Not the ICU doctors; they had found her cancer right away.

I didn’t have time to drive to the medical center where her regular doctor was and strangle him with his stethoscope, so instead I stalked the floors, calling Hospice, trying to get my mother home. She was thrashing and crying now that she knew that her lungs were slowly filling with liquid and she was drowning, right there in front of us.

New York is a terrible place to die if you haven’t properly planned ahead. There are a finite number of hospice nurses because there are a finite number of licenses. You can only call and schedule a nurse during business hours. In New York, when the dying patient is having trouble breathing, you can’t have enough Xanax or Valium to really ease the stress or enough morphine to ease the pain, because these drugs slow the breath and might kill the patient a little faster.

In Oregon, you get a drip that you control. In New York, you have no control.

My mother’s breathing was already shallow and she was on the maximum amount of oxygen available when she got her diagnosis. Gasping, my mother begged me to drag her outside, lay her body on the grass, and let her die there. She loved being outside more than anything, to be in the water, to be in the wind. But the doctors would not let me, because off the ventilators, she would die.

I pulled my own Xanax out of my purse and I gave my mother and myself some pills. She calmed down. I calmed down.

I sat beside my mother, holding her hand. She cried and told me she had so much more to say, but soon she wouldn’t be able to. I told her it didn’t matter; that she had already done so well.

My mother was, quite frankly, a spectacular woman. So many mothers struggle to keep their children as close to them as possible, to make it a hard fight to spread their wings, assuming they know best. Not my mother.

My mother let me see the world. She pushed me to travel and to report back on what I saw. In so many places I found myself in, I knew I was walking on the streets where she had once walked, and that was an amazing feeling, to be reliving her adventures.

She lost her ability to speak five hours after being diagnosed and an hour after that, any responsiveness. Six hours later, in the middle of the night, with my father and me beside her, she passed away without a sound.

Two years later, I understand it better. Like the child I once was, in shock from the unexpected pain, it took me a while. But now I understand it was a gift for her to have suffered for such a short time and for us all to be together, pulled back from our far corners of the world to the place where we started.

Danielle Mantia wrote this article for xoJane.

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