How I Got Here. Or there.
In 2014 I was diagnosed with genetic hemochromatosis. Hemochromatosis is a genetic disorder in which the body stores too much iron. Excess iron, if left untreated, damages joints, organs, and eventually can be fatal. It also makes a person go fucking crazy. Hemochromatosis causes hepatic encephalopathy, which is a disorder caused by a buildup of toxins in the brain. It is not fun.
I found out I had this disease when my gall bladder needed to be removed due to iron overload. During this surgery I briefly died while under anesthesia, due to an overly iron-infused heart. Technically, I did not die. Well, not all of me died. I suffered massive brain damage that resulted in the total loss of my memory. My memory is slowly returning. Then my memories go away. I am reliving my life as my memories return. Having grown up homeless, in a commune, in the forest, in my father's dark-room, my memories-my life-are weird. I keep track of my memories by writing them down. My memories are an ongoing collection of pretty stories. Some are even true. I think.
Born and raised in Northern California, I moved to the Sierra Nevada high desert just before I turned thirty. I now lives in Dallas with a friend who helps me deal with life with a terminal illness. Most people call me Feisty, and this is why.
I am forty-three. My mother died when she was forty-three. She died right after surgery to remove her brain tumor. The last time I saw her, alive, she was on a gurney, not yet sedated. Still with me. Still here. Her long, curly brown hair looked like it was being mulled into a surgical skull cap. I was 17. I watched her being pushed, under a blanket, on the gurney, through blue hospital doors, that closed. Quietly. The doors swooshed. That was the last time I saw my mother breathing. The next morning. I saw my mother again. I was still 17. Not my mother. My mother's body was in a hospital room. Lying on her back, on a hospital bed. Her bed against a brown wall, rolled to the side of the room. There was only one bed in the room. I learned that there are always only one bed in those rooms. The dead people rooms.
Dead people who should be breathing and moving, and dead machines that should be beeping and moving. I felt so shaken, like when I had stood behind the shuddering glass at the one-hour-photo, where I'd worked, last year. That year, I was 16. That was the ‘89 earthquake. Everything shook, rolled, dropped, shattered. Seventeen seconds of rolling destruction. Everything seemed to be wanting to be pulled under the surface of the earth. An invisible force. It was such a quiet, deafening shaking. Like now. Like inside of me now. Looking at my dead mother. Like now. Me. Standing there in a ray of sunlight, on the weirdly soft hospital floor. Always, hospital floors are absorbently quiet. Never walked upon, just padded upon. Except for wheels. Wheels rolled.
The wheels of wheelchairs and gurneys are loud. In hospitals, things, people, are always being pushed. Rolled. I felt more shaken by how little I felt as I looked at her, sleeping without breathing. I wondered if her wheeled bed had squeaked as it rolled her to this room. She still had that skullcap on her head. It was the only time I ever saw my mother's hair look so lifeless.
Today, I am alive, technically. Obviously, my mother and I had brains that weren't built to work for more than forty-three years. Less than 2 years after I watched my mother wave to me from the rolling bed, waving to me as those big, blue doors drifted shut after she'd been pushed through them--less than 2 years later I met J.
I want to see flowers. I want to feel warm water. I want to feel waves crashing against my back. I feel stupid. I feel smart. Do I feel smart because I'm so stupid? Feelings are supposed to be shown, not told, when writing. I want to feel happy. I want to eat. I want to know. I want my hair to not fall out. I need a break. I need a brain. I want a break that lasts me the rest of my life and beyond. I don't want to remember being eight years old with my gymnastic teacher's hands in my pants. I've been working for something since I could walk to school by myself. I want my hair back. I want my life back. I want a sandwich. I want ice-cream. I want to eat with love. With people I love. And who love me. I want to sleep. Forever. I want to live happily. Indefinitely. I want to hold my newborn son, every one of these days. I want to be in love and mean it. I want to hide in a lake. I want to hide with fish. I want to write about people who exist, and who are good. Instead I'm swimming fiercely in shallow water. My knees hit rocks. I taste blood. I remember the metallic, plastic, blasting--the sound of my typewriter smashing cement after I threw it over my second-floor balcony. Little brown buttons with letters in a dark courier font splattered the ground. H and I, two stated.
Whenever I find myself in the hospital room, standing next to the bed on which is resting my dead mother, which is many, many times in indecipherable spans of time, I am looking at the window. It is June 14, which means I am nearly exactly 17.5 years old. I am staring at the white blinds, which are slanted open so, and I look through countless strips of plastic, I am looking at the sky. The sky is blue. Above the top of the concrete roof of the fifth floor of the other wing of The Hospital, the sky is blue. It's that clear, clear, clear, clean, lightish blue. The kind of blue that only happens for a little bit of time, on days with a slight breeze, and little pollution. Danny and I--Danny Lee Clark Junior (he's dead now, too) and I--had left the trailer in San Jose, after the call came, around 7:30 a.m. Now, it was around 9:30. It wasn't yet 10:00. The light would be less clear at 10:00. It would start to look hot. And it was, after all, June. June 14th. 1990. I look at my mother. I look at her. She looks peaceful. I'd never seen her look so peaceful. Ever. The bandage wrapped around the top of her head was neat, and clean, and white. It only covered the top of her eyebrows. I would not--did not--think about the bloody wound hiding beneath the clean, white dressing. It was all dead. She was dead.
Standing on my balcony, in Reno, I watched the explosion. When the typewriter hit the concrete, the black ribbon spool still pressed against paper. After the ancient typing machine crashed onto the ground, I remember brown leaves drifting around my brown typewriter, like ballerinas, floating in the blasted air. Today, now, I want to see the brown leaves drifting across the scuffled concrete of my patio. I want to look between the brown patio steps and see the ground. I want to hear the shuffling sound of shoes as people walk on the other side of the fence, unaware of what they're missing over here.
What I want to be is home.
I want to be cooking paella on my stove, in our house, while our 5-year-old son watches something silly on the tv with J., who is sitting on the long sofa, a shot-glass of to-be-sipped-slowly tequila in his hand. They watch the green Bang & Olufsen television. I want to be there, at home, where I was--where I thought I was--safe.
I want to have just come home from a weekend in Pebble Beach. With Jenn, Jenny, and Carrie. I want to be just home from the weekend and thinking something seemed off. Something with me. I hadn't felt like drinking, and drinking was half of the planned intent of those girl trips. I drive to Target. I buy a pregnancy test. I come home. I don't tell J. I go into the bathroom, the bathroom with the two sinks on the left, the shower at the end of the bathroom, on the right. I pee on the stick. Then I am pregnant. I start crying. I am so happy I start crying. But I am also scared because J. was always honestly clear that he didn't want a child. Ever. This was a mistake. But I am so happy and in my heart I know J. will be too. And he was. You always said most of your romance novels heroes were based on. J. I want to go back there. I want to go home. I want to go back to my life. My life. The life and world I built--the roads that led to my home--my life--still goes on. I'm just not there. I'm not the one there, in my home, looking at my growing son. My life is there, but I am here.
Recently, I've been travelling to Spain. Frequently. I've been by the pool. That villa on the hill. Near Gerona, near the Dali Museum. Flynn is only six months old. Robyn is there. She reminds me that once I had glimpses of home. I read Sweet Valley High books in her upstairs bathroom. Her mom always knitted, while sitting in her blue chair, watching her show. Robyn and I went to the beach. A few beaches. And Spain