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
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.Read More
I ended my job on January 8. It seemed like a pointless shift. Slow, uneventful, fully staffed. My final hours were anticlimactic. My shift ended, we did the obligatory family meal…that’s a shot, preferably tequila or bourbon, if you didn’t know. I waddled my way to the sunset. Fin.
My great hope was that the sun would hit my face and I would feel free. That last day of school freedom when the bell rings and you smell possibility and newness. This was not that. I mostly felt tired and pained, like usual. I went home and grafted into my couch, like usual. I put my feet up and squeezed down the fluid to try and relieve some of the pressure. There is no relief; there is only pressure.
During my second Mount Sinai vacation, I was visited by three wise women on the same day. Mary Catherine, Maria and Hibbs. They all remind me to apply for every benefit I can to help assist me in the healing and transitional process. I admit that though I’ve applied in the past, I still have some guilt around it. I admit that the term ‘Welfare Queen’ lives like an invisible lock on my spine. It makes me stand up straighter sometimes and it leads me to work my fingers to the bone for other people’s projects, restaurants, and dreams. Perhaps, it’s the lock that landed me in the Observation Unit of Mount Sinai.
These women remind me that I’ve worked my entire adult life. They remind me that this is what these programs are for. They remind me that they would all apply without thinking about it. This reminds me how infuriating perceptions can be. It reminds me why I’m always on a slow simmer. It makes me wonder if Lupus is a slow simmer set to boil. I agree that I will apply for everything, as soon as I get home.
I apply for Medicaid on 1/31 while I’m still in the hospital.
Here’s how it goes in Medicaid land: You’re asked to submit documents and you’re given a two-week deadline. They have two weeks after the due date to review those documents. On the very last day they ask for another document ----two weeks to submit---two weeks to review---one more document----two weeks to submit---two weeks to review.
A month goes by very quickly. I haven’t been able to see a doctor in March, I have yet to see a Rheumatologist since my insurance changes constantly and currently I don’t have any. I call my patient advocate and ask her to find out what’s going on. Turns out, I’ve been denied because my employment letter is missing an address. No one has contacted me. No one has heard of Google or a phone. I called the restaurant and get a new letter within 5 minutes and submit it. ----two weeks to review----It’s now March 15. I am accepted, I now choose a plan, which is effective 4/1. Yes, April. I’m told that it’s retroactive. Which is not at all useful. How do you go back and see doctors that won’t see you? How do you go back and get prescriptions?
In the meantime, I’ve had to opt for paying out of pocket for an Insurance premium. This is a $600 insurance premium. Seeing a specialist is $55. Seeing a PCP to refer that specialist is $35. The medications for a month with this insurance, is $389. Were I to have paid out of pocket for all of this it would be reimbursed. I must mention that one of the medications is $1200 out of pocket. Yes, one. So, unfortunately, I’m shit out of luck.
When I arrive home, I also apply for disability, unemployment and SNAP. If you feel some kind of way about any of that, fuck you. Seriously. But, keep reading because you might learn something. I apply for all of those things on 2/6. The disability application is still in process and I’ve learned that it can take up to 3 -5 years. Yes, years. I think they hope you die or become homeless in the meantime. No, I’m not kidding. I actually think they do. Did you know that in order to even apply you have to fill out paperwork for your last 15 years of employment? I gotta tell ya, when your hand constantly tremors that is A LOT of work. It feels a bit mean. They tell me they have the information they need but they want me to see a Neurologist. They make the appointment and I confirm. I get to the appointment and I’m told it was canceled two weeks prior. They don’t know why no one called me and they don’t know why it was canceled. Awesome.
Unemployment tells me to call on Friday and submit my claim. I do so. I get 947 letters asking about my medical history and why I left my job. I fill these all out, the restaurant fills these all out and we both submit. I get a letter from them on a Friday evening, telling me that it needs to be submitted by my doctor within 6 calendar days of the mail date. This means that this letter needs to be submitted by my doctor on that Monday. What doctor? Your guess is as good as mine. This is February, so luckily I have insurance, but shocker, I can’t get an appointment last minute. I am denied. I get three letters the following week. One letter tells me I’m denied because I quit my job for no reason. One letter tells me I’m denied because I’m not physically able to work. One letter tells me I’m denied because I failed to submit paperwork. I get it dudes. Awesome.
Which brings me to SNAP. I've saved them for last because the vitriol lodged in my throat needed these previous stories to loosen it like phlegm. These stories are like cute little anecdotes in comparison. As I mentioned, I’ve applied for SNAP benefits in the past. It was easy and I received them the same day. I was young, healthy and I was working. I was working part-time, volunteering and not making nearly enough money, but I was working. So surely, I will qualify.
I apply online. I submit all the documents that are listed as what they usually ask for. I’m told I should have a phone interview within the week. I get an automated call two days later telling me that I’ll receive a phone call the next day. This call does not list a time. I spend the next day on red alert. I have a doctor’s appointment and I’m meeting Hibbs for a movie. What if they call when I’m on the train? I alter my travel so that I can be on the bus most of the time but I can’t take a bus to the Upper West Side. I arrive at my doctor’s appointment and I’m told they don’t take my insurance. Right. Really good thing that it took me an hour and a half to get there at 9:45am, I’m stoked. I raise minor hell and have an appointment scheduled with a different doctor for two days later. It would eventually be canceled because they needed a referral within two days or I’d need to pay out of pocket.
I’m late to meet Hibbs because I’ve had to take the bus so I can keep my phone on. I keep it on through lunch and the entire movie. I’ll save you the suspense. They called when I was on the train. I get the same automated call the following day. No time, no rhyme, no reason. I get the call while I’m getting a haircut. I’ve lost more than half of my locs while in the hospital and I look like a shed mop. It’s a small salon and now they all know my business. ALL my business. Because of course they call while I’m in a tiny salon. I speak to the caseworker and she tells me she has all my documents she just needs a copy of my social and she needs a list of the GoFundMe campaign donors. I submit that evening 2/11.
On 2/16 I receive my letters telling me about my telephone interviews with the times listed. Thanks, guys. I also receive a letter with a different case number on it and my first and last names reversed. It’s asking me for ALL the documents I’ve already submitted. I call the number listed to speak with someone. I tell her my two case numbers and ask her what’s up. She tells me she sees both cases and that the letter I received is an old case number from 2006 and that it’s now closed. She tells me she has all the documents she needs, except the lease. I submit another copy of it. I also resubmit ALL the documents under the new/old case number, just in case.
Now it’s a waiting game. They have 30 days to decide. On 3/7, I call to find out what’s up. I’m told that they’ll be denying my case because I can’t get contribution letters from each of the donors of my GoFundMe campaign. I’m told I have to wait until I’m actually denied to appeal. On 3/15, I receive my denial letter. It’s dated 3/10. It says that I’ve submitted NO documents for my case. None. It says if I submit these documents by 3/8, I won’t need to re-apply. I want to punch the air. I want to tear my skin off. I want to kill someone. I request a hearing.
I show up for the hearing on 4/6 with T and Maya. The guard comments on my tremor, telling me I shouldn’t be nervous. We go through the metal detectors we arrive and wait. The entire process beginning to end takes about 8 minutes. We enter the room. The judge explains the process and tells me I’ll get to present my case first and that the state will then present their case. I go on my diatribe. The state representative says, "We have all the documents." I’ve printed them here. I don’t know why they claim these documents weren't submitted. They are in the system. She then provides me with copies of the same documents I’ve submitted 987 times. She says she’s missing my lease though. I have it, of course. I’ve watched enough Judge Judy to know not to get caught slipping. I make them a copy. The judge records the entire exchange and rules that the denial was bullshit. She says she can see that it’s an emergency so I should apply again and that I should get retroactive benefits. She tells me they’ll send their findings up to Albany and I have to wait 7 – 10 days.
I hear nothing.
Because I’m a lunatic and I check their online site constantly to make sure I’m not missing anything, I stumble across a notice dated 4/22 in an inbox that I don’t know exist. This letter is from the Fair Hearing office and tells me I need to submit documents in order to proceed with the case. Guess which documents? Guess which fucking documents? The same fucking documents that are literally everywhere. The same documents that were the impetus for the hearing in the first place.
I’m in the sunken place. Who has the spoon? I’m in the upside down and I want that slimy bitch to bring it. I’m so mad; I would have something for his ass today. I’m pacing. The date is now 4/27 and these documents are due by 4/29. If I weren’t Inspector fucking Gadget I would have missed this deadline. I call the office to make sure that this shit is real.
Women who hates her job: HRA
Me who hates everyone: Hi. I just received a notice requesting blah blah. I have already submitted blah blah. I made copies of this at the actual hearing. Blah blah.
WWHHJ: You have to submit the documents.
MWHE: I have submitted these documents seven times.
WWHHJ: You have to submit the documents.
MWHE: I have submitted the documents.
WWHHJ: You have to submit the documents.
After I manage to stuff my fury into back into the bottle, I gather the documents, scan them into a concise PDF and google a free e-fax. I send said fax. It comes back undeliverable. I send it again. It comes back undeliverable again. I get my period. I close the computer, wrap myself in a weed blanket and hate watch the L word. Side bar: IT IS SO BAD. What was Shane’s hair going through? Why couldn’t they find any Latinas in LA? Bless Pam Grier’s heart. Jenny Schechter is the worst character EVER written. PEAK white. Why is she always crying? Why is she always wearing thigh highs under her jeans? Why? What. Is. Happening? I digress.
The next morning I attempt to send the fax again. Undeliverable. Maybe the fax number on the notice is wrong? I call again.
MWHE: Hi. I’m attempting to fax over some requested documents and I want to confirm the fax number. 917.639.2531
WWHHJ: Yep. That’s it.
MWHE: I’ve been trying to fax them for two days and it’s coming back undeliverable. Is there a problem with your fax machine?
WWHHJ: Oh. It doesn’t work outside the building. You have to come in to fax it. You come in and they scan it.
Dude. Dude. Dude.
MWHE: I cannot come in there. Is there an email I can send to?
WWHHJ: Who’s the caseworker listed?
MWHE: E. Omoregbee
WWHHJ: His number is ____________________. Call him and ask him what to do.
I call this dude. He tells me he has to have the documents and someone has to bring them. He tells me I should be there by 4 because otherwise he won’t be there. Awesome. It’s a beautiful day so Maya agrees to accompany me. We arrive are greeted by a yawning bear. He’s wearing a security guard uniform and he talks to us through his yawn. I can’t even deal with him so I walk past him to the elevators and head to the third floor. We get out of the elevator and a lady behind a desk just says ‘No’. She tells me I need to go back down to the first floor. I call E. Omoregbee on the phone and he tells me he’ll meet me in the lobby. He enters.
E. Omoregbee: Dondrea Burnham
Dondrie Burnham: Hi.
I hand him the documents.
E. Omoregbee: Where’s the letter from SSI?
Dondrie Burnham: I don’t have a letter from SSI. You didn’t ask for a letter from SSI.
E. Omoregbee: I’m training. The rules have changed.
Dondrie Burnham: What. Do. You. Mean?
E. Omoregbee: If I use these documents you gave me to show income it might affect your case.
Dondrie Burnham: That’s fine. Those are the documents. I don’t have income.
He points to Maya.
E. Omoregbee: She does.
Dondrie Burnham: What does that have to do with me?
E. Omoregbee: I’m training so I have to ask my supervisor. I can’t submit this today. I’m done working, but maybe, Wednesday (It’s 2:30 y’all). Then you’ll hear something by mail.
Dondrie Burnham: I filed this at the beginning of February. This is absurd.
E. Omoregbee: Ok. You’ll hear something in the mail.
Dondrie Burnham: …………………………………………………………………………
My rage is trailing me like Pigpen’s dust. I walk outside and its 80 degrees so all the men are commentators. I scream ‘Stop Talking!’ They know I’m not fucking around. I’m breathing in an out. I go to Goodwill and walk up and down the aisles to try and shake off the dust. I can’t be on the streets. I might slap someone. I definitely can’t be on the B52. I also can’t be outside too long because my skin starts to singe. My medicine has made me a stranger to myself. This 15 min of life saving, soul-nourishing sun, has me trembling, nauseous and unsteady on my feet. I am so angry.
I attempt to meditate. I try to acknowledge my feelings and not judge them. I vocalize my gratitude for all the things I have. None of that shit works. My chest is tight. I make myself a good meal. It’s salty, like me. I eat a cookie. I breathe. I try and cool my face and skin. I send emails to two lawyers about my insurance denials and my malpractice claim. More on that later. This is the song that never ends. Its just goes on and on my friends.
No one likes to go to the Emergency Room. I don’t even think the doctors and nurses enjoy being there and they invested time, money and education to be there. However, my recent experiences have given me a greater appreciation for zip codes. We all know race and class are the gatekeepers of society, but it’s easy to forget that they are also the keepers of death. You don’t forget, but you tuck it into the highest, dustiest file cabinet in your mind palace and you put a succulent on it and you save it for deep clean days.
I sit in the blue upholstered chair and I wonder who buys the furniture in these places. Blood, fluids and thousands of asses come to mind. Why do they EVER have upholstery? I’ve had more than two experiences of being stained with someone else’s blood in my New York hospital career. And by career I mean, just trying to get some shit taken care of. I digress.
I sit in the chair of a thousand asses and I stare at the large oval desk. It’s what Ikea calls ‘eco teak’ and Lowe’s calls ‘hickory’. I can see the tops of nurses’ heads and backs of computer monitors. I wait for my name to be called. I look around and I’m horrified by the lack of privacy. There are the obligatory privacy curtains, but they serve to simply delineate the spaces. Each bed faces the center of the room, so everyone can see everyone. It’s immediate entrance into a room of pain, moaning and screwed up faces.
There is one room with walls and no door, which directly faces me and houses a large snoring man. To my right, more pain slivers, to my left the ambulance entrance and more occupied ass upholstered chairs. There are no white people in this room. Within five minutes, I hear my name. I stand and a stern nurse looks at me, holds up her hand and says, I was just checking. ………………………… I sit.
The slumbering man begins to stir and calls for the nurse in a small, weak voice. ‘Nurse’? I should point out that eco teak station is approximately three feet in front of this room. There are no less than twelve nurses present. No one moves, no one answers, no one acknowledges. He repeats himself. ‘Nurse’? ‘Nurse’? His hoarse voices gets louder and more desperate. Nothing. It’s reminds me of when you call your friend's asshole cat and their ear turns in your direction but they make no indication that you’re alive or present in the room. The man persists. He starts to panic a bit as reaches his 9th ‘Nurse’?
A woman’s voice emerges from the ambulance den.
Woman: ‘Y’all answer him. You hear that man calling you’.
Infirmed Man: ‘Bitch, Fuck you’
Now Angry black woman: ‘Motherfucker, fuck you. I was trying to help your stupid ass. I’ll beat the shit out of you’
The woman emerges, limping with a cane, she brandishes the cane like a bat and begins limping toward the infirmed man’s room. NO ONE INTERVENES. A hospital orderly walks by and slides a blue privacy screen in front of the door and keeps walking. The woman is standing directly in front of the screen, screaming at the man.
Angry Black Woman: “I’ll beat the fuck out of you. You don’t know who you’re dealing with. I’m gonna kill you”
The woman continues to stand in front of the door menacing – as menacing as you can be when you’re limping on a cane – and finally limps back to her seat. I wonder what she’s in for and as she screams ‘I just need my damn insulin shot’, I get my answer.
My name is called. I stand up and am immediately confronted with a hand.
‘I was just checking’ says Nurse Sternface.
EMTS bring in a man on a gurney. I can’t see him but I feel very sorry for him.
EMT: Turn over.
Broken Man: I can’t.
EMT: Why not?
Broken Man: I don’t know!
EMT: Turn over!
Broken Man: I CAN’T!
EMT: Why can’t you turn over?
This goes around and around like who’s on first. I can’t help but wonder why they think the man should be able to turn over and how hard it would be for them to just turn him over.
Two hours later, I’m escorted to a gurney, told to change into a gown and strapped to a heart monitor. The woman to my left, a Puerto Rican girl in her late twenties, has been vomiting and clutching her stomach. I know she’s Puerto Rican because she’s also on the phone talking to a friend of hers about how in Texas everyone thought she was white. No one knew what a Puerto Rican was and they had the nerve to think it was Mexican. Her young son, approximately 10, is sitting quietly by her side. He gets her water, checks in with the doctor, and rubs her head. He’s a good boy. An hour later, a doctor approaches her side and asks the boy to go get her water. He then tells her she’s pregnant.
PW Girl: ‘Can y’all take care of that?’
Doctor: No. You’ll have to make an appointment with a doctor or clinic
PW Girl: Damn
She calls her friend.
PW Girl: Girl, I’m pregnant. I’m trying to be fine this summer. I ain’t trying to be pregnant. He must got some damn super sperm. You heard about T.I and Tiny? If they can’t make it work, I don’t even know.
At this point her son has come back and picked up the context clues. He asks if he can tell his dad.
PW Girl: He ain’t your father. Fuck him. Until he give us some money he’s dead. Fuck him and his white bitch.
To my right is a man who’s come in for intense pain in his legs and feet. Even with his cane he can barely walk. About 45 min after PW Girl finds out she’s preggo, I hear a doctor at the nurse’s station asking where his last patient for the night is. He screws up his face and walks toward the man. He asks him what’s the trouble. The man starts to tell him how much pain he’s in when he walks.
Cane Man: It hurts so much. I can barely make it three steps. It’s so painful
No Bedside Manner: You have diabetes. Have you heard of Neuropathy?
Cane Man: I know I have diabetes. I know about the neuropathy, but it’s so bad. It’s never been this bad. How am I supposed to walk?
No BM: I don’t know. It’s a cause of this disease. You have to try and keep your sugar down.
Cane Man: I’m keeping my sugar down. I’m doing all the things. It hurts.
No BM: This is what happens. I’ll have them give you something for the pain.
Then he just walks away. They bring him a pill for the pain. No prescription for the future. No plan. They discharge him.
Enter a man wheeling himself down the aisles in a wheelchair screaming ‘I want drugs’. No one seems surprised to see him or bothered that he’s there.
Enter a man singing and dancing shaking a cup of change. No one seems surprised to see him or bothered that he’s there.
Enter Broken Man face down on the gurney, legs hanging off, shoes half on. The orderly pushing the gurney manages to knock into every single corner. Each time Broken Man groans. It’s horrific.
I finally see a doctor. She has a sweet face and gentle bedside manner.
I give her a summary of my medical history and tell her why I’m there. I’m taken for an x-ray and asked for a urine sample. The urine sample sits on the back of my gurney for several hours. No one retrieves it. I don’t know who my nurse is. I don’t know if I have a nurse. I don’t know if they know I’m still here.
A woman sits across from me on a gurney wearing a hospital gown and Timberlands. She says she doesn’t trust these folks. She has to go to the restroom so she gives me her purse and T her phone. She’s been admitted for chest pain. She was visiting for Christmas and didn’t want to ruin the holiday by complaining. She always does all the cooking and she always plays Santa. Ain’t that just the way with black women? You’ll literally kill yourself not to disappoint and you’re lucky if anyone notices. She’s eventually moved to the bed next to mine and told that she’ll be admitted. Her x-ray showed some abnormalities.
It’s now 1am. The doctor comes to tell me that my tests look ok and that I have protein in my urine. I know that, because I’ve told HER that. She then tells me what happens to the body when your kidneys leak protein. I know that, because I’ve told HER that. She tells me that my condition is complex and that I should go to a ‘good’ hospital- one with a name. She suggests I get compression stockings and tells me to stop taking my diuretic because it is dehydrating.
I fight back tears –not because I want to be admitted to the seventh circle of hell- but I’m frustrated. Hella frustrated. Salty. Big mad. Irked. I’ve been here for seven hours and this is my day off. I have to close the restaurant tomorrow. I’m still carrying 40lbs of fluid on my body. I still can not walk a city block. I still have to sleep sitting up. I can not bend my legs. I remove the pads from the EKG. I remove the gown and change into my human clothes. As always, I struggle getting the snow boots on. It's not snowing but these are the only shoes that fit. I stare at the IV and I want to rip it out. I just want to go home. I wait. I wait so long that I actually start removing the tape and I ask T to find me a bandaid and a cotton swab. On her knight's quest she spots the doctor reading about Carrie Fisher on Facebook. This visit will cost me $350.