Walela laying in a hospital bed with a gown, monitors, oxygen, and hair in a pony tail at White Memorial Hospital

On March 30th, I woke up to a series of bruises on my leg, sweats, chills, elevated heart rate, and a persistent cough. Granted I had not been feeling my best for some time, I assumed as a leukemia patient I’m supposed to feel like shit and pushed through it. However, the bruises on March 30th were an indicator I needed to get to an ER as quickly as possible as they are a red flag for blood cancer patients. My friends drove me to UCLA’s ER in Westwood LA where I was seen immediately and given a wide array of tests. The staff were friendly, comforting, extremely empathetic, asked for my consent before any procedure, and checked in on me consistently. While I was scared, I felt safe. A couple hours later it was determined my white blood cell count was 200,000 (normal is 5,000–10,000), my heart rate was 155 BPM (normal is 70–90), paired with a persistent cough likely indicative of an infection, the doctors at UCLA determined I should be admitted and treated immediately.

For those who don’t know, chemotherapy and cancer tends to make patients immunosuppressed and contracting an infection is often life threatening. From the moment I got my blood test results, I was having UCLA’s specialists tell me they’ve never seen a white blood cell count that high. In my mind, I thought 200,000 was nothing compared to my initial leukemia diagnosis in 2017 where my WBC was 660,000. The doctors shook their head in shock saying the highest they’d ever seen was 90,000. In that moment, I realized none of this was normal and I had a sobering realization in the ER that my life was definitely on the line.

Somehow, MediCal determined I couldn’t be admitted to UCLA and wanted to bounce me to a hospital closer to my zipcode. I live in South Central and purposefully went to the west side of LA because that’s where better care is because that’s where all the bourgeois white people live. I was initially told I’d be transferred to Southern California Hospital in Culver City, where I was relieved. Then an hour later, I was told I’d be transferred to White Memorial in East LA. I arrive in an ambulance to White Memorial Hospital at 1am on March 31st. From the moment they wheel me into the building on the stretcher, the emergency room is filled with 9 police officers just standing — naturally my heart rates goes up and my nerves settle in. I’m transported to the telli unit, 6th floor, so my heart can be monitored during treatment. I am settled in, told to rest, and in the morning treatment will begin.

I wake up at 5am to a phlebotomist poking me with a needle, without my consent. This is illegal. I force myself to gather my bearings and I say, “hey can you give me a second to adjust?” She ignores me, grabs my hand harder. I realize I need to urinate badly because I’ve been hooked up to an IV all night and so I ask, “can you just give me 5 minutes, unhook me from this IV, I can pee, and then I’ll be ready to get my blood drawn?” She continues to ignore me, sticks me without warning (most specialists do a countdown), puts a band aid on my thumb, then proceeds to use my hand where she drew blood from to support herself getting up. In that moment, I knew something was off and I felt deeply afraid.

I’ve experienced and my loved ones have also experienced how racist the medical industrial complex is and I’ve lost many to medical apartheid. I know what it looks like and it was thick in the air at White Memorial Hospital — more so than any hospital I’ve been to. In my previous experiences, I’ve been denied care based off racist, classist, and ableist assumptions that have resulted in my conditions worsening over time until I’m hanging over the edge of the cliff and now medical professionals take me seriously. Knowing how severe my case was entering White Memorial, I was immediately concerned I wouldn’t make it out alive.

As the morning continues, I ask my nurse when the primary care doctor and oncologist are coming in. It felt odd I even had to ask because at most hospitals these professionals come in the morning or mid day. My nurse says, “I don’t know but he’ll come today at some point.” To which my friends and I begin questioning him on why he wouldn’t know and why isn’t there a way the doctor can be contacted or an ETA can be determined. I also begin to ask if there’s any way to brief him on my case and get some form of a plan of action over the phone so I’m not sitting here twiddling my thumbs and hoping a specialist arrives. All our questions are met with either “no” or “I don’t know.” There was a sheer lack of communication but also apathy to our concerns.

As the day progresses, I still haven’t seen the oncologist or PCP assigned to me. At this point it’s past 1pm and I’m started to get irritated, I keep asking my nurse what’s going on and he continues being evasive. So, I ask to speak with whoever is his boss — the charge nurse. The charge nurse comes into my room, my caregivers and I express our concern about the lack of communication being had, we express we understand bureaucracy and procedure but a) we’ve never experienced anything like this in our lives and b) there needs to be more transparency. The charge nurse gets defensive, continues to interrupt me, puts words in my mouth, and says that the hospital is essentially a skeleton on the weekend and there’s one person in each department assigned to the entire hospital. To which I say, I didn’t schedule this emergency on purpose, it happened, and it’s not like I have a broken foot or a cut — I have advanced stage cancer and an infection that hasn’t been treated since yesterday at 12pm, meaning someone needs to communicate with me and I need to be seen as quickly as possible by my doctors. The charge nurse continues to be apathetic and says she doesn’t know what to do or how to help me. So we ask who her boss is — the house supervisor. I ask to speak with the house supervisor to which the charge nurse says she already briefed the supervisor and there’s no need to talk with them.

I proceed to ask, “well who can I talk to in order to get better care if that means switching doctors.” The charge nurse suggests the case manager then says I’ll likely not see her until night time because there’s one case manager assigned to the entire hospital on the weekend. An hour later, the case manager arrives and ask for context of my case. I begin to break down my concerns and am interrupted every other breath, then my nurse comes in, and the two begin to have a conversation without me and in front of me to essentially rationalize that I’m doing the most. I interrupt and say, “sorry I’m right here and I know you’re supposed to advocate on behalf of me. In order to do that, I really need you to listen to me and what I’m saying. I really don’t like when people interrupt me so I’m asking you both to please stop doing that.” To which the case manager rolls her eyes and says, “well let me know when I can talk” And I stop and ask, “is there something wrong? It feels like you’re being real defensive and I’m confused as to why. I’m telling you as a patient how I want to be communicated with and I haven’t even finished my concerns.” She laughs and says, “no no nothing is wrong” sarcastically. My caregivers hop in saying, “you really need to listen this person who you are advocating on behalf of.” To which the case managers accuses me of not listening, that we all are too aggressive, and she thinks we aren’t ready for this conversation. I reply saying, “you aren’t ready for this conversation cuz you keep escalating it when I’m just holding you accountable. If I’m not seen by someone in this facility who is a doctor by 8pm, I cannot stay here anymore cuz I might as well be at home or go to a different ER.” The case manager smiles inappropriately, nods, and says, “I will bring you a form that says you’re leaving against medical advice for you to sign at 8pm and you can go if you wish.” Another action that’s illegal: those forms cannot be signed by patients without having consulted a physician but this woman was ready to let me leave no matter what the consequences on my life would be. I respond, “how would I be leaving against medical advice when I haven’t received any?” To which the case manager throws her hands up in the air, rolls her eyes, says “I’m done,” and leaves the room essentially refusing to do her job.

After waiting for another two hours and receiving no care, I decide to call a friend who works at White Memorial as a nurse but not on my floor and who wasn’t presently working. I start telling her everything and she immediately lists all the things wrong/illegal going on. She urges me to change my primary care doctor alluding to the fact he doesn’t do his job and that patients have suffered gravely under his care. She promises to reach out to my oncologist and find a way to reach my primary care doctor then get back to me.

Somehow, after she does that — within an hour my oncologist arrives and I get a call from my primary care doctor saying he’s on his way.

When my oncologist arrives, he’s cold and immediately starts asking leading questions as if my infection was my fault: “so if you had a cough for almost three weeks why wouldn’t you come in? That just doesn’t make sense to me. You would think you’d be concerned about bronchitis” To which I explain I figured I had a cold and I can handle having a cold on my own just fine. My caregivers ready themselves to take notes but the entire time he contradicts himself, “you look better than all my patients with infections” vs. “I’ve never seen a white blood cell count like yours,” “all of this is likely due to stress,” vs. “this is concerning we need to investigate the cause of this further,” “you’re very swollen maybe something to do with your heart” vs. “you’re young and you look fine — you look good,” “it doesn’t matter if your WBC goes down because it’s a sample from one place in the body” vs. “let’s hope your WBC goes down on its own.” Finally we get frustrated and I say, “listen, I always look good apparently but you haven’t seen my baseline for looking good cuz you haven’t seen me healthy” to which he shrugs and says, “all I know is you don’t look my sepsis patients, you don’t look sick.” “Yeah they said the exact same thing to me 2 years ago when my white blood cell count was 660,000. Look at my chart and tell me otherwise,” I retort.

I begin to explain my illness being advanced stage, that it mimics an acute leukemia, that I have a mutation from how long it went undiagnosed for, that having an infection that lands me in the hospital with an extremely elevated blood count is life threatening. Soon after my mini speech, the oncologist (who is also a hematologist) proves he knows nothing about my illness when he starts asking me what my mutation even means to which I show him my bone marrow biopsy report. We ask for the treatment plan in handling the leukemia and infection (which is bronchitis) at the same time. “Well we are likely going to put you on antibiotics — azithromycin — and then you can take your oral chemo today too.” One of my caregivers raises their hand, “wouldn’t there be an interaction?” The oncologist shakes his head, “no, not at all.” I immediately google “azithromycin interaction with tasigna” to which we discover they will have a fatal interaction because of how they both together will interact with my heart. He barely gives a moment to ask any further questions and leaves.

One of my caregivers starts crying out of frustration, “I see this all the time, they always do this shit to us, how many people do we need to cuss out? Nothing is working. When we are nice they don’t care, when we mad they don’t care. This is what they do to poor Black people. Walela has been at UCLA’s ER since 12pm yesterday and it’s what? Almost 6PM? Why hasn’t Walela gotten any treatment? Fuck standard care, there’s no communication and there’s all apathy. Walela’s life is on the line and they know it, we know it, they just don’t give a fuck. What if Walela didn’t know all these things about their illness? What if their mom wasn’t a nurse? What if Walela didn’t have caregivers? What the fuck is really going on”

I try to remain calm but I know how time sensitive it is to get ahead of infections especially in a place like a hospital. I find myself being the one to remind my nurses to flush my IV every 8 hours, to change my bedding once a day, to give me a new gown, to get new water, there was no one checking in on me. When my caregivers would go to the nursing station asking for help, they would roll their eyes and catch a whole attitude. That same day, I had a nurse come into my room coughing and says, “sorry I’m sick.” And I respond with, “what are you doing here? I’m a cancer patient whose immune compromised with an infection, you can’t be in here.” She says from behind her mask, “No it’s ok I washed my hands,” as she attempts to reach for my IV bare handed. “This is a needle that when you open to flush or to hook me to fluids is a direct open line to my bloodstream. Put on some gloves.” The fact I even have to remind people to do their job properly during my stay is astounding. I had another nurse take out my second IV and act like my first IV whose sealant bandage broke didn’t need to be patched up with tape so it wouldn’t get infected. Every hour I was telling everyone else how to not do something that was quite literally going to put my life in danger.

My primary care doctor finally meanders his way into my room at 6:30pm. I go straight to the point and ask, “what’s the plan of action.” And this man really proceeds to tell me, “well I got a call about you at 2am,” he complains. I say, “bet, well you’ve had over 12 hours to think about me, what’s up.” To which he laughs and finds my directness “endearing” and responds, “well you know, we are still getting to know each other. UCLA is the pitcher and I’m the catcher, you can’t blame me for not knowing what to do.” And fundamentally I knew this man was full of shit because if you’re on the same team — you will know what the fuck to do and UCLA transferred my chart. I explain my case and he looks at me surprised as if it was shocking I understood my illness so well — and I ask “so what’s next?” He shrugs, “I’m still getting to know you.” He proceeds to ask if he can listen to my heart and lungs. Followed by him saying, “like the Native Americans with the feather, Africans throwing magnesium into the fire, I check reflexes like this” as he taps two fingers together. And in my head I was like, “what the fuck did any part of that sentence have to do with other.” And at this point I feel like I’m in a time warp of a really bad Boondocks episode that’s a commentary racism and medicine and how little doctors actually give a shit. I look over and see my caregivers are over it. At this point as well another friend of mine whose white shows up. She begins pressing the doctor about all the illegal things that’ve been done to me and this man responds with, “well I’m so surprised, really I am, I will encourage them to do better.” My friend responds with, “It’s not matter of encouraging because these people are breaking the law. It’s not a choice at this point. They have to do their job properly.” I think after hearing this my doctor believes my white friend is my lawyer or social worker because as soon as she says that, the doctor gathers his things immediately and says hastily, “I’m going to go review your case and be back in 30 minutes.”

The doctor returns and decides to put me on antibiotics and says I can’t be on chemo in that time frame. When I bring up what the oncologist said and how life threatening that could’ve been, he interrupts me and says “that was likely a misunderstanding.” As I begin to speak on how it wasn’t a misunderstanding, my primary care doctor interrupts me saying, “I’m a really good listener, I’m a ranked doctor, and I know what it means to be afraid of death because I was in the army. I know what it means to be in battle and not know what’s happening next. I know what i feels like to be you” I internally roll my eyes in my head at the false equivalency of fighting on behalf of the military to cancer. I say, “I’m not afraid of death, I’m angry that it appears no one here is ensuring I will live.” Which finally shuts my doctor up and he leaves for the evening.

I’m ordered an EKG for my heart that night and the technician looks at my vitals and says, “i don’t know why you weren’t assigned this earlier. This makes no sense to me. You should’ve gotten this done the minute you came in.”

At this point I just take a deep breath and hope I’ll get proper care. They start me on my antibiotics at 10:30pm and I go to sleep.

The rest of my stay, I continue the antibiotics regiment and the nurses I’m assigned to are great the following days (the ones from my first day I never see again) — even my oncologist starts showing up consistently despite him only looking at me for less than 2 minutes each day. However, it also becomes impossible to see my doctors — my cardiologist and primary care doctor specifically. When I ask where they are I’m told, “they don’t make their rounds until 12am sometimes 1am, 2am, 3am.” “Well don’t patients especially on this unit need their rest that doesn’t make sense.” The nurses, looking as frustrated as me, say, “You would think.” One of them admitted to me, sometimes these doctors come to work just to sleep and that’s why they do their rounds so late. At one point during my stay, I even started coughing up blood and bleeding from my nose, a terrible sign for someone with bronchitis and cancer, and it took hours before my doctors gave a plan to treat that.

Hospitals in general are a place of deep warfare for Black people. I’ve lost countless friends and family to pure medical negligence and racist practices. I knew what was happening at White Memorial and I knew I needed to focus on getting the fuck up out of there as stable as possible by any means necessary. I’ve stayed at my fair share of hospitals, emergency rooms, and have experienced my fair share of racist bullshit — this was so overtly obvious I felt unsafe. My friends even took shifts staying awake at night while I would sleep because the nurses thought they could come in my room and do procedures without my consent. It should never get to that. I am proud of myself for surviving that hell hole and beating the odds of my infection and illness in 5 days. I’m proud of how knowledgable of my own disease I am and how I was essentially my own mini doctor and nurse. However, I am angered at the thought of what would’ve happened if I didn’t know how to advocate for myself, if my caregivers didn’t either, if I didn’t take my mom’s advice when I got out the hospital: “it’s your job to know your illness better than these doctors because they will kill you.” I can’t begin to imagine how many patients have experienced life threatening consequences of negligence and sheer apathy in general but especially at White Memorial and especially the Black ones. All I know is to share my story as evidence of proof this shit is real. And I’m not the only one — we’ve seen it from Kim Porter to Beyonce to Serena Williams to countless working class Black people from South Central to South Side. We are constantly murdered in the “hands of care” and what the fuck kind of contradiction is that. I am lucky to have survived and the fact I even have to say that is bullshit.