Sundays have always been special. When I was a kid, I'd get dressed in my finest bib and tucker and we'd spend all day at church. I loved church. The music, the community and most of all God. God is like a good glass of bourbon. Smooth and all consuming. When I was at church I felt close to myself, close to my divinity. I felt larger than life. There were other feelings. Fear.Read More
Filtering by Tag: autoimmune
Folks laugh at me when I tell them that long before 'self-care' was the new pink, I thought it was just something white girls did in movies. They'd be putting on face masks or jogging through their lovely neighborhoods or getting a massage and I'd be sitting on the red shag carpet eating pop tarts and hoping the sound I just heard wasn't danger outside the door.Read More
I am especially dizzy the following day. Not only do I have to hold the walls, I cannot really stand and maintain balance. T goes to grab the car from our 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 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 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. 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.
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. Amputated limbs and immobility surround me. I am sitting in a wheelchair. I am angry. I am summoned to the desk. It feels very far away. The wheels of this chair are locked and I have no idea how to proceed. I attempt to stand and I stumble to the desk and fall on it.
T arrives and sits nearby and biting her nails. They call me in and the nurse that comes to get me has a super sunny disposition. 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. He tries again. He is concerned. He leaves the room and comes back with graham crackers and OJ. 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. I need to be readmitted.
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. I am lightheaded and my vision is cloudy. The ambulette finally arrives and as they begin to wheel me out, I vomit once more for good measure.
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. There are so many people the nurses can barely navigate between them. They wedge me on the side of the nurse’s station and come to ask me questions. 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. 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. 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. It’s a large white room directly across from the nurse’s station. They tell me that TV is free in this room and assure me that I’m in good hands. I’m weak and labeled a fall risk. I’m supposed to ring for a nurse whenever I need to go to the bathroom but I’m not having it. I use the IV pole for balance and I slowly drag my weak ass to the bathroom. It’s miniscule, the trash is overflowing and my elbows touch the walls as I squat. It feels like 4am at a dive bar.
I slow drag to my bed and attempt to get some rest. A few seconds later they wheel in Gloria, a Latinx lady in her mid 40’s. Gloria is in for a vicious asthma attack. She’s very popular and there’s a lot of ruckus for 2am. I decide I like Gloria but I want her to hush. Her children will eventually leave and she will receive a multitude of phone calls that will keep us both awake for the hours to come. The nurses outside are cackling and fighting amongst each other anyway. There’s no chance either of us are getting more than a couple of winks.
They come in for our 5am stick and poke and turn on the overhead lights. Shortly after, they wheel in Jessica. Jessica is white, late 20’s or early 30’s and what the medical community calls ‘Morbidly Obese’. I hate this term because it makes her sound more like a circus animal than a human being. She walks with two canes and she’s clearly in agony. She’s been admitted for severe digestive issues and upon arrival hasn’t eaten in 12 days. She has a devastating energy and throughout the four days I remain in that room, she doesn’t receive a single visitor or a phone call.
The next day, Gloria is moved to another room. They take Jessica for testing and I’m alone once more. Enter the random hospital employee who bleaches the entire room. The fumes are overwhelming and to solve this problem he brings in an oxygen tank, which he turns on in the middle of the room. My eyes are burning, I’m coughing and I’m vaguely wondering what’s the point of bleaching the room when my urine sample has been sitting in the same windowsill for three days.
Jessica returns and seconds later, they wheel is Diana. Diana is in her early 60’s, Latinx and stoic. She stares at me from across the room. She doesn’t speak but I can tell she’s in pain. She looks confused and angry. I want to know her story. I quickly realize she doesn’t speak English. None of the on duty staff speaks Spanish. It’s heartbreaking. I stare back at her. I will someone to come for her. The next evening her daughter arrives and I explain that she needs to advocate. I tell her where to find the shower and who to ask for toiletries and that she hasn’t eaten. I learn that she has cancer and a blood clot in her arm. This is her third bout and she’s old hat at this. She barely grimaces through the pain. She looks grateful to me and her daughter explains that she stares at me because I look so young. For some reason, this makes me cry. I cry for all the mothers and grandmothers who carry their pain and ours. I cry, knowing she deserves better and she never stood a chance.
Jessica is taken back and forth for a series of tests. Her digestive track is rebelling and she still can’t consume anything. Unlike Gloria, she winces constantly. I will someone to come for her but my magic fails. She is alone. The nurses tell me that I’ve finally gotten a bed. I’m tired and I want to be worshipped and fed grapes.
While I’m waiting to be moved upstairs, Jessica’s doctor and her meek ass assistant come to tell her they haven’t found the cause of the blockage in her intestines and they’re sending her for more tests. 20 minutes later the assistant comes back and tells her she’s being discharged. She panics.
Jessica: What? How? I haven’t eaten in three weeks! You can’t.
MA Assistant: The doctor doesn’t think there is anything we can do.
Jessica: She just said there was another test. I’m not going. I don’t have anywhere to go. I’m living in a hotel. What if I fall? What if I can’t get back? You can’t.
MA Assistant: I’m sorry. There’s nothing we can do.
My heart shatters.
I try to take a deep breath but its shallow and fragmented. I close my eyes and for a second, I’m a little girl again. I’m staring at the ceiling and I’m willing myself to heal her. I’m willing myself to absorb her pain. I’m willing myself to save her. She calls for her hospital advocate.
Jessica: (Right in front of the I don’t trust her. My doctor said she was doing more tests and now she’s telling me I’m being discharged. They can’t do this. I don’t like the hospital; I’m not trying to stay here. I don’t have anyone! I’m alone. I broke my back last year and I couldn’t work. I got behind on rent. I stayed on friend’s couches for a while. I don’t have any family. I can’t leave. How much are hotels near here? Where’s the nearest hotel? I can’t leave. I can’t eat. I can’t leave.
Advocate: Don’t worry. We won’t let you go. I’ll make sure.
The broken pieces of my heart shatter.
They’ve come for me. On my way out I close my eyes and send them as much love as I have in me. I’m taken upstairs to a lovely room and have visitors within five minutes. I struggle to stay awake and my voice quivers in a corner. I don’t want to let on how insane I feel. My visitors are men and men tend to panic when you peel back the curtain. After my visitors leave, I decide to take a shower and get a good nights sleep. On my way to the shower I notice that every step and every breath is a struggle. I decide not to mention this insanity to my doctors as long as I feel good in the morning.
In the morning, I learn that my roomies name is Eliza. We get very familiar very quickly because she uses the bathroom bedside and the privacy curtain is in over its head. She has to call the nurses to help her and each time she apologizes. Her voice clutches at her dignity and she tries to finish as quickly as possible. There’s a special kind of intimacy to this. I haven’t found the word in English.
I make my morning trip to the bathroom and it feels like hiking. By the time I reach the door, I feel faint. Perhaps, I should mention it. My Rheumatologist is waiting when I come out. She notices my struggle and expresses concern. My breakfast arrives and I’m hungry. I grab the fork and my hands start to tremble. I try to grab the eggs and I spill them all over my gown. I try again and I drop them on the plate. What the hell is happening to me? I call my nurse and ask her to get the doctor. It’s my doctor’s day off so they send some new dude. New Dude says that the tremors don’t make sense. My voice is shrunken and lodged in my throat, but since he doesn’t know me he can’t tell. He tells me they are going to keep me another day to do some tests.
They take me for ultrasounds and x-rays and they take lots of blood. They send a lady in with a sinister black case. She pulls out what appears to be a retractable wand. She tells me to relax and she sticks it up my nose. It crawls down my nose into my esophagus. There’s a flashlight attached and she climbs in after it. She’s down there poking around and I feel like she owes me money. She pulls out and tells me that my throat is inflamed by the acid fountain my medicine has created. That’s just for my information and has nothing to do with why I can’t eek out a sound. I shimmy and shake for the rest of the day and it alarms me that the overall sentiment is a general shrug.
I learn that Eliza has cancer and she too has a blood clot in her arm. It’s increasingly more difficult for her to move and she’s beginning to swell. Her appetite has waned and each time she moves her IV alarms until the nurses come to adjust it. Each time she shifts her remote falls to the floor. Each time her remote falls to floor I get up and retrieve it for her. There are so few comforts here. The privacy curtain has called it quits. The IV alarm will go off approximately every 12 minutes for the rest of the night. I’ve developed scabs in my ears from my headphones but physical pain trumps the pain of the psyche.
The following morning I’m scheduled for discharge. I’m still quaking but my insurance is only valid for two more days and they can’t seem to find the fault lines. I don’t sleep that night because Donald Trump has just instituted a travel ban and I’m seething. I am helpless and outraged and my skin is buzzing with wishes. But, if wishes were fishes, we’d all cast nets and if wishes were horses than beggars would ride. I have not yet secured my own mask; I cannot help secure those around me. I plug in my headphones, wince and finish Luke Cage.
The sun is up and I’ve already been drained and drugged. The remote hits the ground and as I round the curtain, something feels off. Eliza’s skin is waxy and her eyes are lifeless. Her light is dim and I wonder if she’s in pain. The nurse comes in to check on her and notices that she doesn’t look right. I go back to my side of the curtain. She calls her name repeatedly. She asks her to say her name and asks if she knows where she is. There’s an exhalation. The nurse calls for backup. I go for a walk because I have to be able to make a lap before they will release me. When I return there is another nurse and a doctor with her. They keep asking her questions and she isn’t responding. I sit in a chair outside the room and I cry. My doctor comes for another check up, notices me and tells me I’m a good person for being concerned. She tells me that Eliza will be fine but I should stay one more night since my walking is still Wobbles McFarland.
I return to my bed. Another nurse comes in to check on Eliza and things quickly escalate. The sound of footsteps…many footsteps… Loud beeps and thuds…the curtain wafts towards me and my bed is pushed against the wall. The room is suddenly claustrophobic and I’m surrounded. It’s surreal. Before my brain can register what I’m seeing:
Eliza! Eliza can you hear me?
I’m holding my breath. There’s a nurse on my side of the curtain and we’re staring at each other. She’s holding her breath too.
The nurse and I are still staring at each other. Some of the feet exit the room. There is blood on the floor. One of my doctors come to my side of the curtain and asks me if I’m ok. The nurse hasn’t peeled her eyes away and she grabs my hand and we walk silently to the ‘family room’. This room has chairs lining the wall, a bookshelf and a window. I think it’s supposed to be a place to gather your wits but it looks like a waiting room for a principal’s office. The nurse tells me that it was her first code. I ask her if she’s ok. She tells me she’s supposed to be asking me that. I ask her again. She says it was intense. I ask her again. She says no. I tell her that I’m ok and that she can leave me. She looks at me tenderly and considers arguing. She doesn’t.
I call T and tell her what happened. I’m pragmatic at first but the lid falls off. I start to sob and I can’t get my words out. I cover my mouth and stuff the sorrow back in. I screw the lid on tighter and I may have heard a crack. Better not to think about it now. I text my best friend and tell her I need her. I berate her a bit and tell her all the things I’ve been holding on to. Sorrow seeps from the crack and the fault lines glow bright red. I’m coming undone. I’ve never learned self comfort though I excel in indulgence.
I return to the room and am immediately taken for more tests. A few minutes later my new roommate arrives. I had hoped I’d get a reprieve to process. No dice. Maude is in her late 70’s or early 80’s. She is very petite, frail and surrounded by family. Maude is to have surgery tomorrow and she’s in agonizing pain. I know this because she mewls and whimpers throughout the night. The sound of her pain is so stifling that it’s paralyzing. I stab the headphones into my ears and try to meditate. Tears are streaming and my chest is tight I stare at the ceiling and I’m willing myself to sleep. I’m willing Maude’s pain to subside. I’m willing Donald Trump’s heart to grow three sizes.
By morning, Maude’s mewls have become wails. There is no comfort. My nurse brings my discharge papers. I sign my release papers and breathe the freedom in. I smile at Maude’s daughters and I wish them luck. It’s snowing and I feel blessed. Over the next few weeks, I berate everyone about living his or her dreams. My gratitude has morphed into a megaphone. I’m on a soapbox for living. I take walks and post pictures of trees and sunsets. I will the trees to cool my anxiety and the sun to light my guilt on fire. I weigh anger against gratitude and I try to tip the scales. I weigh life against death and I try to tip to scales. I look up at the ceiling and I’m a little girl again willing myself to survive.
I arrive in the Observation Unit and am startled by its brightness. It’s a large white room directly across from the nurse’s station. When I arrive I am alone and I am exceedingly grateful. I know that it’s only a matter of time before I am confronted with some new horror. They tell me that TV is free in this room and assure me that I’m in good hands. I’m weak and labeled a fall risk. I’m supposed to ring for a nurse whenever I need to go to the bathroom but I’m not having it. I use the IV pole for balance and I slowly drag my weak ass to the bathroom. It’s miniscule, the trash is overflowing and my elbows touch the walls as I squat. It feels like 4am at a dive bar. I arrive in the Observation Unit and am startled by its brightness. It’s a large white room directly across from the nurse’s station. When I arrive I am alone and I am exceedingly grateful. I know that it’s only a matter of time before I am confronted with some new horror. They tell me that TV is free in this room and assure me that I’m in good hands. I’m weak and labeled a fall risk. I’m supposed to ring for a nurse whenever I need to go to the bathroom but I’m not having it. I use the IV pole for balance and I slowly drag my weak ass to the bathroom. It’s miniscule, the trash is overflowing and my elbows touch the walls as I squat. It feels like 4am at a dive bar.Read More
“How are you feeling?”…a question I’ve heard no less than 982 times thisyear. Each time a wince and each time a lie of omission. Each day, I stack myself brick by brick and forge a presentable foundation. Presentable enough so that others might feel comfortable coming in to take a seat at my table. The home is lush but not lavish and the party is engaging enough that you forget you have seen the host in….20…30…Where’d she go?Read More