Volume Two and a Half: Mount Sinai *The Remix*
A few hours later I’m moved to another room. I have no idea why. It’s close to midnight and my roommate is sleeping. I’m really excited because this room has a large window and a view. It’s a strange view. I look across the street and I see a shirtless man walking around and cradling a baby. It’s sweet and weird. He does not have dad bod. He has Equinox, hedge fund bod. I wonder if he can see us too? If he can, how does it feel to live so high up and look down at ailing people all day?
Now that I’m settled in, I try to get a little sleep since I know by now that they start taking vitals and blood at 5am. There is nothing like waking up to a needle every day. I learn that my roommates name is Olga. Her son comes to visit her daily. He brings flowers and he brushes her hair. His wife is a nurse in Sunnyside and he asks all the right questions. Olga had been in a rehab facility and was doing well. He’s concerned but he has a good poker face. He asks the nurse to help him with the hair tie; he says he can never quite get it right. Over the next few days Olga’s health will decline. I will listen and watch as her eyes go from reflective and smiling to vacant and searching. Her skin will become waxy and bloated. She will be unable to eat and need to be fed with a tube. They will have trouble getting the tube in and she will go a couple of days without eating. The lack of nutrition will directly influence her decline. I will be a silent witness to her descent and I will feel helpless and stupid.
I have an influx of visitors this week and I feel loved. People bring food, treats and a host of good cheer. It’s difficult because as pleased as I am to see them, I’m too exhausted to engage. My waking hours are filled with shots, drugs, tests, texts and calls. Everyone is concerned. Notifications are supercharged. I feel guilty for craving silence and it’s an impossible dream in any case. I’m shedding water so I have to pee legitimately every 10 - 15 minutes. I check on Olga each time to see how her eyes are doing.
I take 345 tests but really we’re waiting for the fluid to come off and the biopsy results to come back. It’s MLK weekend so each day I’m told that it’ll take a little longer because of the holiday. I imagine the slides and microscopes running around the lab krumping for King. What does the Monday holiday have to do with results from my Thursday biopsy? I don’t complain because there is still a ton of water that needs to drain and I’m still SO exhausted. I’m down about 15lbs. Over the next few days I lose about 30lbs. I can sleep lying down! My legs don’t feel like weights and I can see bones in my feet. I still don’t have any test results. I feel ok but my throat is sore and my voice is hoarse. I sound like I’m dying. I sound frail. Everyone is calling and texting and I don’t want to talk. I don’t want them to hear me like this. I don’t want anyone to worry.
I’m starting to despise TV. Did you know they run a tab for TV? For just $10 a day, you too can watch Cialis -----> Modern Family----- > Latuda ----> Law and Order: SVU ----> Restatis -----> American Dad------- > ASPCA. I draw the line at Big Bang Theory. I switch to Netflix on my Kindle and I start Sherlock. I promptly finish Sherlock and get on the Cumbersnatch train. I totally get it now. One of my Rheumatologists comes to discuss lab results and gets totally sidetracked watching an episode with me. Its witchcraft and I’m here for it.
I want to go home. I don’t know what my next steps will be but I feel paralyzed by uncertainty. My life has become a never-ending scavenger hunt for livelihood. Where will the money come from? I will not panic. I will make a way. I have an amazing ability to work beyond all reason and in spite of myself. That’s how I landed here in the first place. I call my sister for advice. She launches a GoFundMe campaign and my friends and strangers donate over $5000 in less than 24hrs. I come undone. I am stunned. This means that I can send panic on vacation. This means that tasks can be replaced with breath. This means I am loved. This means everything.
The following Wednesday, eight days post admittance, I’m discharged. I still don’t have the biopsy results but my blood work looks good. I’m stoked. The nurse who comes to rescue me is new. She’s young, blonde and lacking in personality. She goes over the discharge process and tells me she’s going to give me all my meds to take so that I don’t have to go straight to the pharmacy. As soon as I take the meds, I feel insane. I’m dizzy and my vision is a little hazy. She’s reading the discharge document aloud and my eyes are crossing. I assume that I feel this way because these meds are generally distributed throughout the day. I’m excited to claim my freedom so I take T’s arm and she guides me down to sip the fresh air.
I feel alive, but I also feel insane. I’m fairly weak and I can’t talk too much. I get to the car and I’m so happy to see my love, Caitlin. She’s beautiful and hilarious and she always makes me feel good. I love her and I’m grateful. Gratitude will become my leading lady. I arrive home and I’m greeted by my own smell. Every home has its own smell. Sometimes it’s soup. Sometimes it’s cat. My home smells like Palo Santo and brown girl. Many people say that hospitals smell sterile but I disagree. They smell like disinfectant and decay. They smell like a cover up.
It’s only 3pm but I feel like I’ve been working on a chain gang. I sink into my old spot on the couch and I sleep for hours. When I awake I feel dizzy again. I assume its because I’ve slept too long. I grasp the walls as I walk to the restroom and I hope that this goes away soon. I know that I have a follow up in a week so I decide to take stock of this and keep a list for the Doc. Over the course of the next few days, I get progressively worse. I can’t hold my head up. I can’t read or complete thoughts well. The dizziness worsens and every time I have to get from one place to another it feels like I’m on a tiny ship in choppy waters.
My follow up appointment is on Wednesday, January 25th. On the eve of my appointment, I wake in the wee hours. My heartbeat is accelerated. My breathing is shallow. I am seeing bursts of lights and am suddenly a bit blind. I cannot stand. I am dying. I can feel it. My brain is moving rapidly.
Brain: You are dying.
Heart: Fuck, I’m dying. I’m not done yet.
Brain: You are dying. T will wake up next to you and find you dead. That’s traumatic. You should move.
Heart: I love her. I don’t want her to find me like that.
Brain: Roll out of bed. Crawl to the living room. Try to make it to the couch. Try to maintain dignity. Even in death, you can be considerate.
My breath is shallow and wispy. My heart is beating ever so fast.
Heart: It’s too soon. I’m not ready.
I crawl to the kitchen and it’s as far as I can go. I don’t have the energy to crawl properly so I’m doing that thing babies do where they just use an arm to pull themselves along. I’ve always made fun of them when they do that. The absurdity of that is pleasing in the moment. I realize that I cannot make it to the couch and I feel the heat coming from the vent in the kitchen.
Brain: Lie in front of the vent. Maybe the heat will keep you alive longer.
Spirit: We are not done. You must keep breathing.
Heart: We are not done. You must keep breathing.
Brain: Breathe deeply. Close your eyes and slow your heart down. You can do this.
I lie on my back. I close my eyes and I focus on my breathing. My soul prays for me because I don’t have the words. I give myself over to my breathing and suddenly meditation clicks. I finally get it. I’m radiating all of my energy, my very core, into my life force. I am, quite literally, willing myself into existence. I am granted a reprieve. I am blessed to see the sun come up. I don’t want T to be afraid when she comes and sees me sprawled on the kitchen floor. When I can see and feel again, I drag myself back to bed. Business as usual, nothing to see here folks.
I am especially dizzy today. Not only do I have to hold the walls, I cannot really stand and maintain balance. I can’t hold my head up. Imagine a cuter version of Gollum clutching the walls of the brownstone. T goes to grab the car from Nancy, our transportation fairy. While she’s gone I attempt to take a shower and get ready for my appointment. My chest is tight and my breathing is still labored. I get in and I brace myself against the wall. I wake up a few minutes (I assume) later with wet hair and my limbs dangling like a colt. My head hurts, I’m seeing stars and I am cold.
I slink to my bed and I attempt to get dressed. I treat the bed like a lazy susan and I use it to stabilize while I pull on tights and a shirt. I lie there trying to get myself together. I text T to let her know I’m going to need her help getting out of here. When she arrives I can see that she’s concerned. But we’re warriors and we push through. I wrap my arms around her neck and she pulls me down the stairs to the car. It’s intimate, vulnerable and pitiful. We’re stuck in traffic and running late. I call to let the office know that I’m going to be late. They tell me if it’s more than 15 minutes I’ll forfeit my appointment. I explain that I really need the appointment. I tell them about all my side effects and how I can’t even sit upright without getting nauseous. They don’t care.
T pulls up as close as she can get but she has to make it around the block, find parking and I’m already late. I get out and cling to the building in front of me. I then cling to the backs of cars in order to make it across the street. When I arrive at the building there are bars on the walls I can cling to. The security guard notices my inability to stand and offers me a wheelchair. He sits me in it and tells me that he has to wait for the other guard to come back because he needs to escort me upstairs. The clock is ticking and at this point I’m 30 minutes late. The security guard takes me to the wrong floor. I’m irked but at this point I’ve already missed the window so it is what it is. I check in at the desk. They ask me if I’m ok and I tell them no. I explain that I am late and why.
This room is brimming with brown bodies in various states of misery. There is a woman holding a sign and leading a workshop on a new advancement in treating Diabetes. She is telling them how it will regulate sugar and perhaps prevent dialysis. She asks how many people are currently on dialysis. Most of the room raises their hands. I am surrounded by amputated limbs and immobility. I am sitting in a wheelchair. I am angry. The lady giving the presentation asks if anyone has any questions. She is obviously caring and passionate about her cause. This is a tough room. I am summoned to the desk. It feels very far away. The wheels of this chair are locked and I have no idea how I’m going to make it to the desk. I attempt to stand and I stumble to the desk and fall on it. The guy says he was gonna come to me. Right dude. You made eye contact, watched me struggle, let me fall and now you wanna tell me you were gonna come to me? Chivalry is dead and I hope this guy’s sex life is too.
T arrives and is alarmed about the chair. She sits nearby and bites her nails. They call me in and the nurse that comes to get me has a super sunny disposition. SUPER sunny. Blinding even. He jokes with us and asks the basic questions. I’m so tapped out at this point; I have T answer for me. He takes my vitals. But I don’t have any. He tries again, no dice. He jokes, “You ARE alive, aren’t you?” I am not amused. Remember, I willed myself to live but my body is still catching up. He tries again. He is concerned. He leaves the room and comes back with graham crackers and OJ. He makes me pound two OJ’s and he gets a reading. He tells me to relax and he goes to get the doctor. She comes in and her face falls. She treated me in the hospital and she knows my personality and my disposition. She asks me what’s happened and when I tell her she looks sheepish. Like a puppy who just shat in your favorite shoes. She tells me she thinks I need to be readmitted. T offers to walk me over since the hospital is just on the next block, but for their protection, I have to be taken by ambulette.
I wait three hours for the ambulette. In that time, I vomit constantly. I can’t get comfortable because my chest feels like it’s caving in. It feels like what I assume the black shit on Spiderman feels like or basically, like any superhero transformation but without the dignity or powers. I am lightheaded and my vision is cloudy and going in and out. I have no control over what is happening to me or what will come next. The ambulette finally arrives and they load me in. As they begin to wheel me out, I vomit once more for good measure. T walks over to meet me. They take me to triage and ask me questions.
Triage Nurse: How are you feeling?
Me: Not great.
TN: What brings you here?
I look at T. I can’t repeat myself again.
They wheel me down the hallway and wait for me to be taken into the ER. When I arrive there are 876 more people than the last time. Seriously. There are so many people the nurses can barely navigate between them. There are no chairs for patient companions because there are so many stretchers. They wedge me on the side of the nurse’s station and come to ask me questions. I defer to T. They attempt to start an IV. My veins will not cooperate. They try an infant needle. My veins will not cooperate. The nurse tells me not to worry because she is the best at this. She is gentle but it’s super painful. She has to slowly jab the needle in because my veins are so shrunken. She finally gets it in and they wheel me to the side and I hover between a closet and an employee only entrance. Each time the door opens it hits the stretcher. They start me on fluids and they keep coming to do tests of my motor skills. I can tell I’m not excelling at them. I’d say I’m at about a C level. I am not a C student, so I try harder. I’m still not great.
I am freezing, shaking and my lips are turning blue. I have no toiletries, charger or reinforcements. T goes to find me food, a blanket and an astronomically priced wall charger. They admit me but inform that the average wait time for a bed at that point is 60 hours. In the meantime, they take me to the Observation Unit. This is a special unit in the ER for folks who need to be observed before being discharged. Folks in this unit are supposed to be there for a max of 48 hours. There are no showers in the rooms and the restrooms are small. Though there are supposed to be a max of two patients to a room, there are always three. I will be in this room for four days before I am taken upstairs. My two roommates will rotate and teach me lessons in humanity that I never wanted to learn. More on that later.
To be continued…