Most of my life I have been afraid to die, except for when I really wanted to, but even in those brief suicidal flashes, I was always too afraid of it. It was more like a comfort, or a reality check– knowing I could just jump in front of the train, or take all the pills, or leave a car running in the garage whenever I decided, made me know it was always a choice I was making to live. A litmus test that showed I knew there was something to be here for. The one time when I really thought death had come for me, when illness had taken over unexpectedly, the fear miraculously softened a little. But what remained completely unbearable now knowing what my death would do to my family and friends. The fear in their eyes when they looked at me. Seeing a glimpse of this grief made me want to live.
When I got the job at the college, I only had three weeks to move across the country. I scoured Craigslist for apartments and only these dingy little shit holes showed up or huge four story homes, and then row houses. What was a row house? The bottom floor of white clapboard Victorian caught my attention because of the photos of the interior woodwork. The ceiling in the living room was beamed, there were inlaid floors, and a room with warm reddish walls that the landlord referred to as the “gallery” for some reason. I should have known when he told me there was a hot dog shop next door as if it was a perk. Wyatt had helped me to sell almost all of my furniture, we had a yard sale and then he took everything that was left behind to the thrift store on Glendale Boulevard. The day I left I was driving to get a cat carrier when I caught sight of the mountains at dusk in my rearview mirror and I started to cry. This landscape was home. I didn’t want to say goodbye to mountains, yet I knew I was.
Wyatt came with me on the red eye; I bought him a ticket and my cat, The Bat, who had just had a tumor removed from his toe was quiet the whole way, just two little mews that seemed pathetic and lonely with the drown of the jet engine and I wondered what he would do if he knew we were actually in the sky. Flying. I still remember how it was when Wyatt was actually there. I was with the ghost of him for such a long time. But there was a time when I could grip his hand during turbulence and he would reassure me. When he would hold me at night, brushing my hair from my neck and kiss my shoulders, even at the end. He came with me and we got to Pennsylvania the next morning and somehow the cat had lived even though I was convinced he would die of fright.
It was January and the landscape couldn’t have seemed more dreary– grey everywhere except for the thousands of red brick houses we seemed to pass. I was quickly remembering winter. The apartment I had rented was the entire bottom floor of the house and there was more room than I knew what to do with. It was dark. There seemed to be too many exits, four ways in or out. A back room with dirty carpet that was supposed to be the master bedroom, but we just shut the door when we looked in. It was like the back half was carpet and mildew, and then there was a great kitchen and the front formal wooden world. None of my belongings were here yet; no car, no bed, no furniture. We slept on an air mattress. When Wyatt left a few days later, I felt so small in this place where I didn’t know one person and nothing close was familiar.
I could hear the upstairs neighbor talking to her “caseworker” and having sex with a man who would lumber up the stairs late at night. Sometimes I could hear the person’s muffled voice on the other end of her phone; the sound from her room such a direct shot into mine. It only made me feel more far away and the intimate sounds both scared and repulsed me. I had seen her bleached hair, her long nails, everything tinged by the yellowed smoke. When giving directions to her place on the phone, she also liked to mention the hot dog place next door. There were businesses here, like hot dog places, on residential side streets, sandwiched between houses, with small signs and I wondered how anyone ever found them. I had never seen so many hot dog places.
For days there was no hot water, and I couldn’t shower. There were mouse droppings in The Bat’s food dish, and I discovered mold covering the walls of the rooms I didn’t want to enter. The Bat looked like he saw ghosts at night, he would sit wide-eyed at the top of the kitchen cabinets, stop suddenly in doorways as if afraid to cross the threshold into the next room. There were no locks on the windows. All of this and the sound of her sex in the middle of the night made me cry, forced me to leave in the dark one night and never come back.
I saw a sign on a place around the corner and the woman was willing to sublet it to me for six months. It was clean and huge and reminded me of San Francisco and less of death. I called the guy who was taking classes at the local community college who had given me a free kitchen table and chairs that he had advertised on Craigslist because I knew he had a truck and I knew no one else. I remember not being able to breathe when I ran down to the ATM at the pizza place to give him some money for his time. The cold February wind pinching my lungs and the cough starting to crack it was so dry. He asked me to smoke weed and to cook dinner with him one night. I declined the weed, but thought about the cooking. I was flattered and lonely, and later when I was well and heavier, I’d think it was because I was so thin at this point that things like this happened. It wasn’t until I decided to move that night that a neighbor told me the first apartment used to be a funeral home. That explained all the ways in and out.
There were three stories at the new sublet. It felt like a castle. Three bathrooms, a dishwasher, a washer and dryer. A deep tub. Each room was a different color. A metallic gold living room like a temple. I used one bedroom just for my clothes. The walls were a sickening sky blue like it expected a bouncing baby boy. The bedroom I slept in was a deep brown and the light cast the shadows of the tulip trees on the walls and I’d watch the branches dance. There was a ceiling fan that looked like a huge tropical winged insect directly above the bed that made me feel like prey. I had never lived somewhere so nice or so large. I waited for Wyatt to join me from Los Angeles. After a week in the hospital that came later, I waited. And it’s here that I don’t really want to talk about the sickness or the presence of disease, but it did come and I was with it alone and it hung heavy and there were days when I sat on the floor of the attic, laid on the floor in the attic, that was meant to be a library or a place to write a book, but really it was a place to surrender and wish for things to be over. A place to give up. All the potential in that house stayed an idea. Wyatt. Us. It all stayed an idea and that was clear when he came and started an immediate fast, refusing food for a week, making jugs of maple syrup and cayenne, and lemon juice. What a strange way to begin. When spring finally came it was more than I could handle. The bloom was so bright.
The whole reason we had moved to this place was because of this picture in our minds of the Hudson Valley and a house we’d build out of old shipping containers, arranged in a rectangle with a courtyard in the middle. It seems so cliché now, a young couple in the country make their modest mid-century fantasy home out of recycled materials. The steel would make such solid foundation to its structure it could support whole walls of windows on one side. The Bat could go outside in the courtyard without ever being able to escape into the woods. That was important. We’d be closer to that after moving, at least geographically.
There was this couple that I had met through work, both artists, and they had this house, the original homestead in one of these towns that is really just a road and this beautiful land that went back away from the road and three barns for studios. They had this amazing daughter who was always sewing and taking apart books and laughing with her parents and talking about how she would pretend to be a horse when she was little and all of a sudden it all seemed possible to be so remote and far away from our context. That a life like this could make us realized. And I knew they had more money than either of us and an apartment in New York and more secure positions at the college, but I wanted to have what they had.
When it was clear that it wouldn’t be like that at all, when we were no longer together and I would often go to dinners at the couple’s ideal home, I would walk through their bright green door, into their white farmhouse, and listen to their music without Wyatt and realize it wasn’t just the absence of him that was difficult. Walking back to my car one night, listening to the summer buzz of insects, the loneliness I felt was more an acknowledgement of the acute aloneness I had felt since childhood. It had always been there. Being an only child with neglectful divorced parents had made me separate from others for a long time. I wondered if I could ever really feel connected to anyone, to a family, to be part of something. It was deep and I no longer wished to bear it, but on that clear night I knew it was mine.
The sickness had been building. For months, maybe even years, they suspected later. Making notes about the swelling, the bruising, the hives, the welts, the shortness of breath, the muscles and joint aches, the night sweats, the weight loss. Everywhere I went people said I looked amazing, they smiled at me, talked so loudly, boorishly about my slender figure. I had never been so well received. I remember in particular the woman at the mailboxes store from which I would mail packages and academic job applications. She was small and annoying and had a strange accent that I couldn’t quite place where everything sounded like a happy question. She often seemed to want to know more about me, and I would bristle whenever I had to give her information that felt too personal. She talked about my weight, loudly and happily and too often. It doesn’t feel good to lose weight when you are not trying. When in the pit of you, you can feel there is something deeply wrong.
For those little things that I mentioned before I had been to doctors and been diagnosed with asthma and allergies and even once scabies. One doctor at Cedar Sinai, when I came to her with swelling and itching and giant black and purple bruises all over my body, that it was all caused by my anxiety. All of which were wrong in the end and for all of which I received countless ineffective treatments. The symptoms would come and go.
When we first started spending time together and Wyatt lived in the tiny back house in Echo Park, I would walk up all the steps slowly and without noise so he wouldn’t hear me coming, so I could rest and not seem out of breath when I would finally knock for fear that he would think me out of shape or lazy. Sometimes it took a long time for my breath to return. Sometimes I would have to sit and wait. I carried these secrets because I was ashamed.
It all hit in the row house across the country in this unknown place of Pennsylvania, after the Craigslist boy moved me in. Two days later I had a 104 fever. Ice baths didn’t bring it down. I was on the phone with people who were too far away to give advice and this was the first time I felt a fear that deep. A colleague brought to me to a doctor that the college recommended and the doctor insisted it was the flu. Somehow the flu passed and Wyatt came to visit and the fever went down, but I had lost more weight. So much so that I had never even dreamed of being the size I was. I remember in spite of the being ill trying on all of our new thrift store finds for him, completely amazed that my body looked the way it did in these clothes and that these seemingly tiny clothes fit the body I was in. Part of me had wanted this my whole life. And after his weekend visit, a plane ticket I had bought him, I tried on the tight plaid dress I had worn at my going away party a month before and I was swimming in it. I asked a colleague for a recommendation of another doctor and went to see him that Thursday after classes.
At my new job I had been taking the elevator up one floor because I couldn’t take the stairs without getting totally winded. I tried to do this in secret so that none of my new colleagues in the department would notice and think I was lazy. I walked into this job knowing there were tensions and grudges that had lasted years– there were affairs, children born from these affairs, and professors who had married their students. I had been advised by someone who I trusted, and who got me the job, to tread lightly and not voice too many opinions. I wasn’t sure yet who was my friend and I hadn’t learned to not speak my mind in an academic setting. College had been the place that taught me how to do so in the first place, it gave me a voice, so it was a long time to undo this impulse. It was important to me that nobody thought I was lazy. I had been taught that was one of the worst insults. My grandmother who never rested and was still swimming daily and working into her 90s and my father who was a fitness fanatic made it seem like the worst sin. So I was filled with shame each morning as I pushed the button in the large echoey foyer and hoped that no one would see me standing there in my new down jacket and pants in sizes smaller than I had ever worn. I went to all of our department meetings thinking, “Are you a good witch or a bad witch?” and it took years for me to figure it out for some. Carol, one of the few who I knew was a good witch from the start urged me to go to her doctor when I told her I still wasn’t feeling well. So I did. I went slowly down the brown tiled steps, too tired to feel lonely in this new wintry place, and got into my car wanting to cancel the appointment and just head home to my cats, who, not unlike the people in my department, were warring.
I drove to a part of town I had never been to, just off of the infamous Route 22 where people complained about traffic and frequent accidents, its two lanes seemed so tame compared to the freeways of Los Angeles, although the driving felt more aggressive and less predictable. Everyone seemed to go too fast or too slow. The fifteen-minute drive to work was refreshingly painless and it made me laugh when people called it a commute. The office was in a small medical building behind a large water tower. The tower seemed almost comical, some kind of small town middle America monument. It was unfamiliar. It remained some kind of outspoken loud eyesore of a memorial to the trauma that I would incur that night, those years to come, for the whole time I lived in Pennsylvania. And even in the black of this winter night, it marked the spot.
The doctor’s office was on the second floor and right away I didn’t like him. He asked about all my symptoms and I told him about the fever, the night sweats, feeling out of breath, the fatigue, and the weight loss. I thought I had pneumonia, but my lungs were clear. He asked if I was taking anything and I told him about the vitamins, herbs and homeopathic remedies I had shipped to me from California. It was here we disagreed. He didn’t believe they worked and he said that if I were to see him, I’d have to agree and do the treatment he recommended. Because of the weight loss, he recommended that I go downstairs and get a chest x-ray even though he didn’t see anything wrong during the examination. I don’t think it was until I was there that I realized how much weight I had lost, close to 50 pounds.
When I was in the waiting room waiting for the x-ray, I noticed it was a nice office; there was maybe an orchid, perhaps tea or at least nice looking paper cups and water. It seemed clean and bright, not terribly depressing. I went into the room with the technician when called; she was short, round, had curly dark hair, and what I remember as a turquoise and black top with a large pattern. She asked why I was there; I told her I had had trouble breathing. We made small talk, she in the other room, me topless, and then she said it. Maybe it was “holy shit!” or “oh my god!” or “Jesus Christ!” but she said something she wasn’t supposed to. Whatever it was that she saw was something she had never seen before and that was clear. To say that this is not what you want to hear is putting it mildly. When I questioned her “Is it cancer?” she said that I would have to talk to my doctor but that she could see why I had been having a hard time breathing. She seemed panicked and asked me to wait in the waiting room while she called him upstairs. Now the room didn’t seem so nice. I wasn’t sure how I was supposed to sit still. It suddenly seemed so late at night.
The doctor came down, went with the big-mouthed technician into the room to view the images and came back out and asked me to go upstairs with him. In the elevator he turned into someone much more caring than the man who had argued with me about homeopathic remedies minutes before. “What’s happening? Is it cancer?” maybe I actually asked that question less than I remember. I imagine I was too scared to say it aloud too much for fear it might bring it on. But what I had was something I had never heard of. He couldn’t answer my questions, he said he didn’t know. But that I needed to go directly to the hospital. I don’t think it was something he had seen before either. The panic began to grow, the fear engulfed me. He led me back into the examining room and told me I could make as many phone calls as I needed to, but that it was important that I went to the hospital right away to be admitted. I told him I was all alone there, that I didn’t know many people, that I had cats that I needed to feed. I don’t know who I called, but I know one was a new friend that worked at the college and he would feed the cats, one was Carol and her husband Jay who offered to come and get me and take me to the hospital, and one was my dad who I told to get on a plane immediately. In my father’s own panic he became absorbed in the details of he would have to do to make sense of his journey. He was in Florida visiting my grandmother and had no warm clothes, what was he supposed to wear when he got here? And once again the thought of having to carry him through this, to parent him through going to Target to get a pair of pants and a jacket, overwhelmed me. Maybe he couldn’t see how big this was, how long I’d known something wasn’t right. If there was ever a time to show up, this was it. I felt the same way about Wyatt who I know couldn’t come because he had just been here, but part of me was resentful that I had come all this way on my own and I was the person who was now waiting when we had made this decision together. I think I called him too, but hung up disappointed, hearing the quiver of worry that brought his voice to a higher pitch. Where was I on the spectrum of living and dying? What had my body done? And although it didn’t seem like it at the time, this man who didn’t believe in any of the alternative medicine that I trusted deeply, was the one who saved my life. But that I did not know yet.
In his transformation from argumentative doctor to worried doctor, and let me tell you worried doctor is something no one wants to see, argumentative doctor is much more preferable. But this worried doctor had another moment of kindness where he decided to let me get picked up by Carol’s husband Jay and wait at their house until a bed was ready for me at the hospital rather than send me to the emergency room. It seemed like an act of kindness, but what I learned later was that it was because he thought I had tuberculosis. So after a few hours on Carol and Jay’s futon, wrapped in a Mexican blanket, crying and waiting and crying and waiting, the hospital called and said they were ready for me.
The drive through the darkness in Jay’s grey Audi sedan feels like a car commercial in my memory: winding slick wet roads, handling curves, houses illuminated with warm light, the white glow of the hospital. This was a strange land. I had no idea where we were going, the map of the city still a mystery to me, as I had only been there a month. Being in the fancy car and driving on back roads made me feel like maybe the hospital would be fancy too. And in some ways it was, that lessened the blow a bit.
When we got there it was late. We checked in at a small desk and right away we had to put on surgical masks. I wasn’t sure why, but they wouldn’t let us take them off. They took me immediately up to a room. A negative pressure isolation room. Double doors, no sharing space, no sharing air with another patient. They told us over and over again that we had to keeps our masks on. I am needle-phobic, and much more so then, before this situation, before childbirth. When I was told I had to have an IV and get blood drawn I told them. The young nurse put numbing cream in the crease of my arm and we waited. Then some woman who may have been a very good nurse in some other areas, but who clearly did not know how to insert an IV or draw blood dug around in my arm until I told her she had to stop and find someone who knew what they were fucking doing. I’m sure I did not swear. I am sure it happened when she left the room. It grew later and later, and eventually the IV was put into my hand. Eventually the nice young man who was feeding my cat came to keep me company so Carol and Jay could go home. I don’t know how late it got, but he slept there with me, brought snacks, played cards, and didn’t for one second seem scared that he might catch something unforgiveable from me and my heart was so swollen with gratitude for this unexpected friendship that had shown up in this bleak land of snow and row houses and scrapple. Here I was. Not alone. With David. Here next to me on a cot was this young gay man whose biological father had died of AIDS, whose mother was an agoraphobic hoarder. Did I learn his story there or in the days pervious where we chatted outside my office and I pretended to be well? I don’t remember. But there was a road David had travelled that was as uneven and dark as my own had been. And I loved him for showing up, with no questions.
No one would tell me what was going on. For days. I repeated these questions: What could it be? Am I going to die? Is it cancer? Over and over. Or maybe I didn’t.
A blizzard came the second night. My father flew into Philadelphia from Florida and had to drive 3 hours in the snow in the dark, which he hadn’t done in years. David was there when he came. David didn’t leave my side until he came. And when my father walked into the room the look on his face scared me to death. Somewhere in this time period, maybe it was then in that moment, I became less afraid of death itself than I was of hurting the people I loved most. The way your heart breaks when you see your own father afraid to look at you because you’ve lost so much weight, because you look like death. I saw the hope disappear from his face when he looked at me. The smile go slack, the blue in his eyes sharpen.
For the rest of my time there, six days, a lung biopsy, a CT scan, blood draws, TB tests, an infectious disease team, a pulmonary specialist, a regular doctor, a slew of nurses, some kind and gentle, and some nervous or rough. There was no sleep, machines beeping, the door opening and closing, the masks on and off, the tape on the IV itching, the hand swollen. One night nurse who came from pediatrics to draw the blood from my artery for a special test came back with pages of local parks and hikes to visit. Another nurse told us that she thought I had sarcoidosis and met my dad secretly in the cafeteria with printed out information on the disease pleading with him not to tell the doctors she had done so. Those two women were like angels. I still wish I knew their names so I could send them a letter and a gift. The best way to describe what they saw, the doctor said, was that I had tiny white marks all over my lungs, little grains of rice or stars, the x-rays he said looked like constellations. I didn’t want to see but my dad did. I learned later that the medical term for these is granulomas, and with sarcoidosis they tend to be star-shaped and are referred to as asteroid bodies.
The whole time I was being poked and prodded and to try and work through the fear and touch gentleness in the person whose hands were on me, whose hands I was in, I practiced the phrases of the Metta mediation I had learned in California to help with my anxiety. May you be filled with loving kindness. May you be well. May you be peaceful and at ease. Maybe you be happy and free from suffering. It was a wish for them, but also a plea. It helped. It was the only thing I had to hold on to get me through and it was it was a secret. Inside. Sharing the space with my constellations.
