Every day, it’s some new, shitty thing. Today, my roommate, Mr. Billings, is having a conversation with one of his several personalities. His voice is soft and sad. He sounds aggrieved. “Why are you always so mean to me. You are just nasty.”
The personality berating him speaks in a staccato style, firing insults at the injured Mr. Billings. “You’re a faggot. That’s why she left you. You suck dicks” says the personality.
“I don’t” says Mr. Billings in his soft, injured semi-whisper. “I’m not no gaylord or whatever. I loved her very much. I loved her. I still love her. But she kicked me out and she don’t want me back.”
“That’s because you a faggot” is the response, said with an edge of menace, “anybody lets a woman, A GODDAMN WOMAN, walk on him like that, got to be a faggot.”
“Yo, man” says the guard sitting in Mr. Billings’ side of the room, “you can’t talk like that. You got a roommate now.” One of the personalities lets out a long and rattling cackle. And then, Mr. Billings reappears, says apologetically, “I understand,” and goes quiet for a time.
Billings is a 53 year old black man. He’s frighteningly thin, almost emaciated, with long, gangly limbs that seem to operate independently from the rest of his body. His hair is wild, with long, greasy strands all over the place and a tiny tail, pulled together high on his head, and held in place with a rubber band. He wears standard issue hospital garb, the uniform of the infirm; weird gown, blue medical pants, and blue grippy socks. I’m wearing the same thing. We all are. His eyes are sunken deep into their sockets, and he looks like he’s been on the street for years. I know from his multiple phone calls — with social workers, with Social Security, with various counselors — that he is homeless, not for the first time.
His phone calls are a nightmare. On the calls where he gets put into an automated menu, he starts out as Mr. Billings, speaking softly to the recorded voice. “Yes … EBT … new card … lost or stolen … “ but the aggressive personality soon appears, and yells at the computer on the other side of the call. “Bitch, shut that music off,” he yells at the hold tone.
He pleads with the nurses and the doctors to let him leave. “I’ve been here for weeks,” he cries. “Why won’t you let me leave?” He pushes the call bell. When the intercom buzzes, a voice comes through. “Yes, what is it?” “Lunch please. Now,” he yells back. “NO APPLESAUCE.”
How did I get here, in this room, with this psychotic patient? What fresh hell, indeed. According to her friend (the journalist Vincent Sheean), when Dorothy Parker asked the question, it was not meant as a witty aside. Parker was an outwardly funny misanthrope who also suffered from severe depression. When she asked, “what fresh hell can this be?” she meant it as a genuine expression of dread. Its easy for me to complain about all this stuff, but for Billings, every day is truly a fresh hell.
When you spend over two months in the hospital, there is some new indignity every day. Maybe it was the no shower thing. For nearly 60 days, I had a Swan-Ganz Catheter in my neck. I couldn’t shower and had to “wash” myself with packages of medicated wipes. They warmed them for me, at least.
Maybe it was the catheter, itself. It is constantly irritating and has to be changed every two weeks. It’s a painful procedure, and my neck is constantly covered in bandages. They have to move the catheter from the right side of the neck to the left every two weeks. In between changes, the nurses have to change the dressing. Peeling off the bandages leaves the skin on my neck feeling like a giant patch of stingy, hot irritation. After the bandage is removed, the entire area, including the irritated skin on the neck and the puncture hole, where the catheter enters the artery, get scrubbed with an alcohol-soaked sponge. Its a huge bummer!
Maybe it’s the dry skin, or the sleeplessness, or the unceasing interruptions, or the constant beeping of my telemetry, or the ever present smell of sour milk (where does it come from?), or the shitty food. Who knows? But there is definitely some new fresh hell every day, placed on top of all the other fresh hells I’ve already experienced. I miss my family terribly. They visit, and we Face Time every night, but it’s not the same.
Maybe it was the defibrillator replacement, sprung on me minutes before they rolled me down to the cath lab. Surprise! Or maybe it’s the removal of the swan catheter because I had clots after the defibrillator placement. Maybe it was the strep infection in my arm, which, in combination with the clots, turned my left forearm into a hot, itchy, swollen mess. Because of the strep infection, I was deactivated from the list while waiting for a course of antibiotics to finish and for my blood cultures to be seven days clear. All tolled, this added up to nine days off the list. A new fresh hell every day while I wait to wait again.
The clots required removal of the Swan catheter, which meant I could not stay in the CCU and was moved to the “floor.” The CCU nurses, with whom I had developed a nice rapport, seemed concerned. “They’re putting you on the floor?” they asked in worried tones. Then, “at least it will be quieter.” I had an idea it would be bad when my favorite nurse, Sandra, pulled no punches and said, “Oh, they’re moving you to the FLOOR? Ugh.”
Laura came to visit a day or two after I was moved to the floor. I was in “bed 2”, the window bed, so you couldn’t get to me without passing Mr. Billings, who was pacing around without a mask. I heard Laura before I saw her. From three feet outside the room, with the cop between her and my roommate, she shouted “Andrew, I’m here.” She, for good reason, did not feel safe being in the room with Billings, so I we found a space in one of the lounges. We sat unhappily there for a few hours. It had been a a horrible stretch of days; a new fresh hell every day, and I was not very good company, I’m sure. When she left, I went back to my room and put on my noise cancelling headphones so I didn’t have to listen to Billings’s personalities clash. I made it through two more days. One day, my friend Mike, an old surfing pal, came to visit and, given our mutual appreciation for all things absurd or ridiculous, we had fun just laughing at how completely absurd and ridiculous this situation is. I joked about writing a take on The Odd Couple, with me as Felix and Billings as Oscar. “Maybe you write it in kind of a Jim Carroll voice,” he laughed. By the next morning, I’d had enough, and the nurses knew it. I got a visit from the charge nurse about the situation and, though it took some time, they found me a new room, with a new roomate.
When I moved in, my new roomie was asleep. “Great, a sleeper, I thought.” Soon enough, he was awake, and I had yet another fresh hell to enjoy. He played his TV so loud that I could hear the Telemundo game show over the thunderous doom metal (maybe not the best musical genre for a person teetering on the edge of sanity) blasting through my headphones. In addition to the loud TV, my man had an incredible variety of ring tones, each assigned to a different contact. When his wife/girlfriend called, the phone cried out “WHY WON’T YOU ANSWER ME? IT’S YOUR CELL PHONE.” Another made the rata-a-tat-tat sound of a machine gun being fired. Another sounded like a pond full of big bullfrogs in the summertime. There were at least six different tones and his ringer was loud enough to be heard over his TV. When he answered the calls, he had to shout into the phone so he could be heard over the game show. He must have a lot of friends, because the calls came in all day long. Finally, he was discharged, and I had the room to myself.
That night, I fell asleep in a blissfully quiet room. But it wasn’t long until the next fresh hell came along. In middle of that first night alone, a new roommate was rolled in. I woke up for just long enough to realize what was happening. I was dreaming when, later in the morning, I heard panicked whispering in the hallway. “Does he have a mask? Do you know the results.” A nurse came in with a mask and asked me to put it on. “Does he have COVID?” I asked the nurse, who looked at me nervously. I was about to completely lose my cool. “DOES. HE. HAVE. COVID?” I demanded.Not my finest moment, to be sure. She stammered; “I … uh … he … um … let me get the doctor.” The charge nurse came in a few minutes later and told me my new roommate had tested positive for COVID and I had to go down to dental radiology for a mouth Xray. I had been fully awake for less than 20 minutes. The whole episode was so bizarre I could barely process it.
When I got back from dental radiology, I was seething. There were no rooms available, so they stuck me in a lounge and blocked off the entrance. It was the same lounge Laura and I retreated to in order to avoid my crazy roommate. When the heart failure doctor on rounds that day came by, I unloaded on her. “How can this happen?” I asked. “If I get COVID, I can’t get a transplant. This is insanity. Just fucking nuts. And it happened two days after I moved out of the room I was sharing with an actual crazy person, who was homeless, and could have had TB, or pneumonia, or any other communicable disease. What in the fuck is going on in this hospital?”
The doctor I was haranguing, who had absolutely no involvement in how I came to pass through this Kafka-esque week from hell, was admirably patient, affirming, and understanding, as I ranted. She had been on rounds for a few days, so we were already familiar with each other. For example, she knew what happened with Billings, and was appropriately apologetic for the latest fresh hell. She promised action and encouraged me to file a complaint with the Patient Services Administration, which I did. She couldn’t make any promises, she said, but she’d try to get me my own room.
Early that evening, was in my own room, where I slept more soundly than I had since I got to the hospital. The next morning, after showering in my own bathroom for the first time in nearly 60 days, my tubing got looped around the door, pulling the IV from my hand. You’d think that would hurt, but I barely felt it. I checked it quickly and it looked like it was still held in place by the tape. It wasn’t. I walked around for two minutes between the bathroom and my bed, turning my bedroom floor into a Pollack painting with blood droplets. A new day brings a new fresh hell.
Once I was settled in my new room, I had a few visits from Patient Services about my formal complaint. The hospital makes a tremendous amount of money off a patient like me. I hate to be that cynical about it, but its just the stark reality of our messed up health care system. So, the calls and visits had the feeling of a hotel concierge trying to calm an angry patron. Eventually, the senior person from patient services came to the room to deliver an acknowledgment letter.
He was a youngish man, maybe early thirties. He was impeccably coiffed and well-dressed, in a slim fitting blue suit with a window pane check, a bright but understated tie, and tan, buckle oxford shoes. He spoke in the fashion of a person whose job it is to handle the serious complaints. If I had to guess, I’d say he got a B.A. in hospital administration from St. John’s. He was pleasant and understanding and we had a nice enough conversation. He recounted the call from Laura and reported that she “was very upset, understandably, and we want to make sure both of you are comfortable with the level of care you are receiving.”
The acknowledgement letter was ridiculous and totally unsatisfactory, from a consumer perspective. But, as a lawyer, I admired the obvious collaborative effort it took to produce a five paragraph acknowledgement letter in which the only thing acknowledged, is the fact that, at all times, the hospital was operating “above and beyond the requirements of the NYSDOH, NYCDOH and CDC.” The word COVID does not make a single appearance in this masterwork of liability avoidance. “I hope this letter conveys how seriously we took your experience,” the letter says. It’s my favorite line. The word “took” says so much. At least they haven’t moved me. Yet.
My entire existence here seems absurd. I keep saying that, I know. But who lives in a hospital? Seventy-five days is a pretty long time. Not in the grand scheme of things, sure. But while you’re doing it? Holy shit. One day, time feels like it is moving backwards. Then, suddenly, you’ve been here for a month and a half. It’s fun to joke about Kafka and Dorothy Parker, and a new fresh hell every day, anything to keep it light.
I am constantly aware of how lucky I am. By comparison to so many other patients here, I have it easy. I’m mobile. I’m able to work. I can shower and wipe my own ass. I only have one IV drip. I don’t have a catheter. Some of my fellow transplant candidates, those of us able to actually get out of bed and walk around, occasionally run into each other doing laps around the cardiac floor for our daily exercise. They all say the same thing to me: “you look too healthy to need a transplant.” None of them looks healthy.
One friend, Joe, who I speak with at least once a week, has an external pump. It enters the heart through a big hole in his chest. He says it’s terribly irritating. He’s been waiting a month longer than I have. He owns his own business and is worried he’s going to run out of money. Just the other night, he got news that he might be getting a heart, only to be told at the last minute that the donor heart was not usable. In addition to waiting — for God knows how much longer — I now have steel myself for that eventuality, too.
Joe may get a new heart soon, he’s at the top of the list. I hope he does. But how is it possible that the richest country in the world makes it so expensive to get lifesaving care, that your bills will end up bankrupting you? Joe said if loses his business and goes bankrupt, it will be because of this time in the hospital. New heart, new problems.
You can feel the whole system groaning under its own weight. The rampant dysfunction of our health care system is on display all the time here. For Billings, a Medicaid patient, that means he will get whatever he needs to live and walk out of here. He’ll be discharged onto the street. He will likely fall out of the system and be dead within ten years. I imagine he will die sad and alone, without family or friends. Joe has insurance but can’t work from the hospital. His life will be saved by the transplant, but to what end? What good is new lease on life it comes with crushing debt, a bankrupt business, the possible loss of his home? And then there’s me. I have a good job with decent benfits. I pay 20% of my bills until I hit the $15K out of pocket max, when my insurer takes on 100%. I can afford the out of pocket max. I’m the lucky one.
I have the luxury of counting my blessings. Not everyone gets blessings to count. They tell you during the evaluation process that mental health is an important component of your care. So I just try to stay positive. It’s not easy, because everything — the naked inequality of the system; the anxiety that flows naturally from my decades long awareness of the precariousness of my own life; the fear that comes from knowing that, at some point in the (hopefully) near future, a team of surgeons will be sawing through my sternum, removing my heart, and replacing it with a stranger’s; the idea that I will have to do this again in twenty or so years — it all goes around and around your brain. It keeps you up at night. The trazodone helped with sleep for a while, but seems to have lost its traction. Work is sometimes a welcome distraction, but also, kind of stressful!
So what do I do to keep from falling into a spiral of negative thinking? At the risk of sounding like some kind of dime store self-help dipshit, I try to think about Mr. Billings. I only spent a few days in a room with him. If we exchanged 100 words in that time, I’d be surprised. But I know he’s got it way worse than I do. The cardiac problem that brought him to the ward, atrial fibrilation, is less severe than mine, and probably not deadly. But his story is already written. He has no family and no home. He will likely end up in a shelter and then, who knows where. The system will grind him into dust. Shit, he seemed halfway there when I met him.
I have a colleague who has been a great help to me, not just with work. We’ve been working together for years, and I consider her a friend. She just lost her mother to Alzheimer’s, and talked to me about how impressed she was by the way her father was able to stay positive as he took care of her mother through her long decline. “You can do anything for a day, Andrew” she told me. “So, you just think about getting through today and and then, tomorrow is a new one. And you’ll get through tomorrow, too.” So, I just think about my family. I think about the lovely suburban home I’ll return to when this is all done. I think about paddling out to surf clean little waves on a cool September morning. Its corny, but I count my blessings.
Earlier this week, they moved me out of my single room and back into a double. I tried to prevent it. I argued and huffed and puffed. “How is it possible that this hospital that touts itself as one of the leading transplant centers in the world can’t provide single rooms for your long-term patients?” I asked the Patient Services Administrator. I told them to look for other options, and come back to me. “You could pay for a single,” she suggested. I asked her how much. “Seven hundred fifty a night” she told me, with a straight face. I went a little ballistic. “Jesus Christ! So, you have empty rooms available for thirty-five hundred a week? Awesome! I’m sure a lot of your patients can afford that.”
“Well, we prioritize long term patients,” she told me, “isolation patients are first for singles. Then paying customers. Then ordinary patients.” “Paying customers? I guess that is what happens when healthcare is treated as a consumer product. That’s fucked up. What happened to ‘first, do no harm?’” I stopped myself before I said something really nasty.
The new guy might be the worst of the roommates I’ve had so far. He looks like a big troll. The skin on his face is bumpy and mottled. He is retaining fluid, so he looks puffy and swollen. I have the window bed, so I have to walk past his bed to use the toilet or leave the room. He lays there, splayed out on his bed, the folds of his big belly pushing against his gown. He farts loudly and without discretion. The worst thing, though, is the constant snorting noise he makes, all day and night. It’s a combination of labored breathing and a phleghm-coated throat rattle. It sounds like a fat demon clearing its throat. After day one, I wanted to smother him with a pillow. By day four, I’m ready to smother myself with a pillow. Its actually quite distressing and, after nearly 80 days in the hospital, I feel like I’m at the end of my tether.
I was irate that the hospital moved me. I’d been feeling pretty good in my own room. After what I’d been through, with Billings and COVID guy, being in a single made me feel like I could wait as long as it takes. Now, I’m not so sure. I know its not the nurse’s fault, or the doctor’s fault. I know beds are a limited resource at a big, old, urban hospital like NYP-Columbia. But I can’t help but feel that this situation with troll man is somehow unfair. My sister came to visit and I was a hollow-eyed basket case. “I’m so sorry, Andrew, I can’t imagine what this is like,” she said, eyes wide in horror at troll man’s snorting, followed by the sound of him spitting his vile expectorant into a cup.
Just as I was starting to really wallow in self pity, I got a new nurse. Sophea is about six or seven years younger than I am (I’m 50). She was born in Cambodia and was five when the war came. Her father was killed in front of the family. She didn’t fully explain how she came to be in the US, but I assume she came with the refugees who entered the country in waves from ‘75-’79, after the fall of Phnom Penh.
I was complaining to her about the double room, about the awful roommate, about how shitty the food is, and anything else that came into my head. “Have you ever been so hungry you ate grass?” she asked me. “Well, I have.” I was taken aback, and spoke before I thought about what I was saying: “Well, I’m not from Cambodia. By that standard, I’ve never actually been hungry at all, and certainly not so hungry I would eat grass.
“What kind of medical care do you think you’d get in Cambodia?” she asked. She was on a roll. “You think you get a comfortable bed like this? Three warm meals every day? You probably can’t get a transplant there, you know.”
I felt a little bit ashamed, but Sophea turned a corner. “It doesn’t matter where you are. In Cambodia, or in New York, or wherever. Whatever you are going through, you have to live every day. You have find a reason beyond you. So you live every day with purpose. You have to count your blessings.” Either Lesley, Sophea, and me are all reading the same self-help dipshit, or these truisms really mean something. The cynical me (the one I’m trying to be better than) would believe the former. The natural optimist in me (the one I am trying to more fully become) chooses the latter. Its not a choice everyone gets to make. As long as I can make the choice, I will try to be the natural optimist, one who has a purpose beyond myself.