CW: death, suicide, cancer, brief mention of disordered eating and self harm

I had a stem cell transplant in December 2020 to treat my leukemia. I have spent the years following transplant asking myself: why did I even do this? Yep, that’s right folks, I am not the grateful cancer patient. I am not going to internalize my own survivor’s guilt / the survivor’s guilt projected onto me and say what is expected of me. I am not the inspiration non profits use for their token card. I am not insightful or going to offer you some life altering wisdom. I am the Bad Black Cancer Patient turned Bad Black Cancer Survivor — for I am not thankful I survived. I’m neutral at best.

And…I know what’s incoming:

“You ungrateful ass bitch” — Yeah, I am an ass I guess but I’m an honest ass bitch. Me having my own complicated relationship with life and death doesn’t diminish the appreciation I’ve expressed for those who have been so kind to me. And if that’s what’s being internalized, perhaps reading this at another time would be best for you.

“But Walela you have a book coming out (in 2024), but Walela you have representation, but Walela you lived to tell the tale, Walela you help so many people” — we don’t consider what it takes to be a storyteller — it is burdensome to carry the survivor’s guilt and uncork your worst fears and demons (To quote Natasha Trethaway: “I think poets are people who are like this; for whatever reason you feel psychological exile because you’re always an outsider…”). And let’s not get it twisted: a blue check next to my handle doesn’t mean fat ass checks are being written that can sustain my living expenses to where I can experience stability.

Listen, we can acknowledge truths without pity. We can see the duality. I am giving insight into my brain. This is not a “woe is me,” I don’t want pity or sympathy or to be victimized because I don’t care for it. And of course, there’s the infantilizing crowd that asks: “are you taking your meds, we know you’re super depressed” yes I am, I text my medical team, I go to support groups, journal, read self help books, practice and venerate my ancestors and yes I do feel them. I try my best to follow paths like: returning to art, moving into grief work, writing, and doing the whole “nurture your inner child” thing that everyone chitter chatters about on the internet. In short, I am speaking matter of factly about where I’m at.

I made a foolish mistake with my extreme optimism through transplant. I became convinced surviving cancer meant my hyper-vigilance would show herself out the door making life easier. Because I was “safe.” She never did, she wears boxing gloves, and she is always there and ready to kick my nervous system in the ass.

Most of the time, I spend hours mulling over what cannot be undone, I know “don’t live in the past Walela.” But don’t we all carry a first class ticket to the past in our minds? The past informs the present. Presently, I’m tired. Correction: beyond tired. In a world that demands Black people tap dance through the horrors of capitalism, settler colonialism, and all the phobias and -isms — I am not afforded the break or grace that is extended to white survivors of cancer (and frankly abuse too). I am expected to be a robot with a smile. It gets old…and as you get older, it gets really fucking old.

For years, my cancer turned me into a spectacle on the internet and when I got a donor / when I hit remission, it was curtains double time. There was an immediate discarding: from people online who once closely associated themselves with me for their Good Samaritan complex and faux altruism, to others in my life expecting “well you should be fine by now, the cancer is gone,” to medical institutions providing absolutely no support to what this level of trauma does to a person.

I am not grateful I survived. And that may make you uncomfortable reading, this doesn’t mean I’m not grateful to my donor, to everyone who helped me find a donor, who took the time to talk with me, or to you reading this right now. I’m explaining personal relationship with life, death, and survivorship. Death is not a scary thing for me. Death has had a constant presence in my life before and after cancer. I was acquainted with Death early, losing three of my most important and closest family members: my elders before I turned 17.

Through venerating them, I know there is an alternative place where those in my family who truly love me, care for me, and continue to watch over me are there. I’m sure if we sat with this even logically, given all the information, one can understand how tempting the idea of stepping into the other side can be and even wish I didn’t survive my near death diagnosis in 2017.

Death is the final gasp and release of pain; yet even for Black people, it’s not that simple. That peace we are supposed to be resting in is not necessarily guaranteed as there’s holograms reviving us, unmarked graves, missing caskets, and our corpses being meddled with and experimented on (Killing the Black Body / Medical Apartheid / The Immortal Life of Henrietta Lacks).

Ever since 2017, I have felt myself teetering on the seesaw I used to sit on back in Montessori — I swing high and crash down low then push myself up again. When you expend all your energy for years towards material and literal survival, the back will break from carrying too much, the body will sink as the contents keep piling on years after, and the fall on the way down may as well send me into Dante’s Inferno.

The anguish that comes with surviving cancer and/or abuse is often not acknowledged because people are uncomfortable. Yes, I too, am uncomfortable experiencing all this and talking about it so let’s be uncomfortable together. People really seem to have some sort of skewed idea that after the appointment in which I learned I was in remission I reached the end of the fuckin Lucky Charms rainbow. Or that when I came forward about the abuse I experienced, then I was completely unchained and transcended into a champion of survivors. Yet the reality is, there are limited resources and many, for cancer specifically, have the goal to “reintegrate into society ASAP” (you know lil miss capitalism always needs laborers to exploit) and for abuse survivors the goal is often to silence, criminalize, or deny it happened.

I am certainly in a better place than I was last year and yes, “life is back in my eyes.” However, contrary to popular belief, this has not been a vacation. It’s been disorienting, taking the time to navigate my other disabilities, having emergencies. Having to scrape up money for bills because I’ll be damned to lose my privacy again. Losing large amounts of money to replace what my ex broke due to negligence and getting my apartment to be a livable habitat, and still trying to replace things of mine I had let her borrow but was never returned.

I’ve lost many friends because they benefited from who I was when I was with my abuser, not who I am now outside of my abuser — this current survivor Walela is more inconvenient or “too much” compared to cancer patient Walela.

There’s a raging pandemic that goes ignored which makes life bizarre and isolating when everything is allegedly “normal” and it communicates the vulnerable do not matter.

At times, I will self isolate and be cold if my trust is violated. I will often choose solitude over feeling more pain than necessary. My childhood companions of disordered eating and self injury are menacing and have spent over half my life beside me — longer than most friends. And I am an only child whose family has been largely absent the last 7 years, who all refuse their own accountability, and to have a parent who, out of their own avoidance, disappear on me when I attempted to express my chronic suicidality and being heartbroken that my childhood photos were destroyed (from going no contact years ago) — meaning there’s only a handful of photos that document I was even here on this Earth from infancy — adolescence…now that type of pain hits different.

I never really got a break or was able to relax after transplant. My workaholic tendencies yawn while coming out of a deep slumber — they knock on my computer screen with a devilish smile sneering, “you could always be doing more.” Thing is, the world is a deeply apathetic place for Black people to wake up to daily, as we get to, yet again, not live up to non consensual expectations. Then we go online or go outside and see how we are constantly viewed as an open season for violence. It is excruciating to be aware of how all this shit is rigged meaning in the big picture, I cannot ignore being confronted with: how can we, as Black, produce for your consumption, copying, “education,” or “entertainment” vs. truly acknowledging what it means to be treated as sub-human (I don’t even like the term human but anyways) and to come from a lineage of that generational trauma without care.

Usually, I feel like a flickering translucent being trying to materialize into something, or somebody. But: if this is truly the light at the end of the tunnel that I spent years working and crawling towards: It’s meh.

To expect any survivor to be grateful, to even have an investment in life, is a grave miscalculation. Sure, there are days I do feel that euphoria. They are few and far between though. I don’t live in my pain, my pain is heavy and for that reason it takes a long time to expel from my body. It leaves me in small chunks and for fuck’s sake I’d wish it’d hurry up. But it doesn’t.

I sit with Pain as I write this, it’s me crying and having that lump in my throat. I go to bed with pain sleeping on the other side of the bed my ex used to sleep in — I don’t miss her, I wish I was never abused by her meaning I wish I never met her. Pain lives in my phone for all the people I cannot call — most of all: my mother. And social media “memories” of people long gone: including parts of myself.

There’s no real conclusion to this. If me being almost 29 and writing this, not having shit figured out, and being a complete mess makes me immature — so be it. I am. That’s why I am the Bad Black Cancer Survivor after all.

And a bad bitch too…don’t forget about that.

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This is entirely my own experience, contemplations and questions as a result of my own life. I feel sharing this side of myself, one that’s stigmatized frequently, that so many of us are stigmatized for, can be/has been cathartic.

CW: suicide, suicide ideation, self harm

“Friedrich Nietzsche stated, “The thought of suicide is a great consolation: by means of it, one gets successfully through many a bad night.” This is not to say that chronic suicidal thoughts are harmless. The more someone thinks of suicide, the more they might get used to the idea, thus dissolving their inhibitions and fears around suicide,” — by Stacey Freedenthal, Understanding The Person With Chronic Suicidal Thoughts

Over half my life, I have had long lasting intense bouts of not wanting to be here. And here as in alive. Suicide has often shown itself in different masks to me but the deep core feeling remains the same each time: I want to die.

Is that dramatic? Mmm. No. Am I depressed? Mmm. Yes. And a lot of other things too. Am I medicated? Mmhmm to that too. Have I been in therapy? Mhhm Mhhhm Mhhm. We can keep asking the questions, just know: yeah…I’m trying…and sometimes you can do everything within your means and it still feels like not enough but you keep trying. But also. Hear me out for a second. I think it would be pretty fucking relieving if we all admitted that long term or chronic suicide ideation is a thing so many of us have had to or currently struggle with.

I mean look at the world around us…? We are on a rock floating in space while colonialism ravages it, capitalism tanks it, and we are told to keep working as the cost of living increases. This isn’t a manifesto to say go off into the night and do it. Please don’t take this as the point of what I’m about to write. It’s just I have spent years convinced from non profits, TV, movies, social media, that you don’t talk about suicide until it becomes a problem. But there’s never an acknowledgement of the fact that: me being suicidal isn’t THE problem, it isn’t something inherently wrong with me, or a fuck you to everyone around me, THE problem is the conditions I’m living under. Does that mean I’ll stop feeling suicidal with the fall of capitalism and a liberated society? Probably not. But I do know it hit different when my material needs are covered.

I know there are folks who do not have people to talk to when it comes to suicide, who feel it’s a personal failure, who are afraid to admit it to themselves, who feel like they’ll be “too needy” or “too much” — it’s isolating as hell. Furthermore, I understand the hesitancy to make anyone aware of feeling/being suicidal for a myriad of reasons, but I’m going to go with the first: hospitalizations and institutionalizations are terrifying for we have absolutely no agency. Given we are always told to call the suicide hotline or go in front of a therapist or psychiatrist, many folks experience loads of trauma before AND after admitting to suicide ideation, especially if there is a plan or thoughts of a plan — which often results in a 72 hour hold that can cause even greater trauma. Or many people don’t remember how they wound up in a psychiatric hold (various reasons can be behind that i.e. a blackout). I worked at a teen to teen crisis hotline in my youth. I remember the calls where we would have to keep kids on the phone so their location could be traced, so that an ambulance could go take them to a hospital in the middle of a Friday night.

The glaring problem with suicide intervention, crisis intervention as a whole, is that it is often abrupt, invasive, can catch us off guard, we — the survivors- lack autonomy, and it’s seen as a one time thing — meaning it will never happen again. Two of the biggest driving forces when I’m feeling suicidal are: being choice-less and helpless. I think having the experience I’ve had working at a hotline a decade ago has resulted in having light bulb questions like: what the fuck kind of irony is it that I was actively suicidal while working at this teen to teen hotline? Why did I feel like I couldn’t say anything at the very place that could maybe help me? Why did I hide my self injury? I was among counselors. I was among people I could trust.

I still don’t have the answer: part of it was shame, another part was me not wanting my family to find out how fucked up I was, and more recently I’ve asked myself: was it watching and also talking to kids who wound up trusting myself and other listeners only to have the cops show up, a mental health crisis team show up, seemingly out of thin air? Did I feel I was betraying them? “a mad friend is better than a dead friend,” just didn’t feel like a good enough platitude for me back then and now.

I’ve had a long time to think since little me was working in that hotline room. Have endured some heavy duty shit and only now am I starting to ask: What is an intervention? What constitutes a crisis — isn’t it different for each person? What happens beyond helping someone for “that one time they wanted to die”? What is the after care?

To zoom out. The problem isn’t me having constant suicide ideation. The problem is that we don’t consider: crisis isn’t a one time event, it’s the current state we are living in and attempting to navigate. The world we live in isn’t sustainable for maintaining life, for maintaining health, for maintaining anything other than the circulation of capital. No matter how many prescriptions a psychiatrist can write for me, there’s simply no prescription for grief, for suffering, for oppression, there is no way to medicate or self soothe our way (whether self medicating or with the help of a psychiatrist) up out of our material conditions.

While this is such a morbid and sobering reality to acknowledge daily, I still make the choice to take my medication because it quiets those thoughts down some. I’m also aware I got lucky with a good psychiatrist who diagnosed me thoroughly, one I can admit some dark ass feelings to, and he isn’t ready to pounce and send me away to the nearest hospital against my will. I mean to this day, I use the skills I learned to self soothe in therapy. Especially using a “grounding memory” which is one of me in swim school with my grandmother while I sit in my shower, gripping my shoulders with closed eyes repeating, “then is not now, then is not now.” And yes, all these things have helped immensely. I will never downplay that. But what I’m saying is that even the best therapists and psychiatrists cannot change the material conditions of their clients. And we all know within the field of mental health (medicine in general), there tends to be a huge amount of invalidation, or racism, or ableism, or unsolicited advice, which results in a “why the fuck am I here trying over and over and keep failing over and over,” to play on repeat in our minds.

The problem is not suicide, making it an individual problem is one of the core issues. The problem is there’s not enough support to keep people here, whether pre or post suicide intervention, pre or post suicide ideation. There’s hardly any resources that are available to vulnerable populations where we can genuinely feel safe. Safety meaning: not being threatened by the state. And yet, a majority of “professional care,” means bargaining with the state while also knowing how many Black people have been murdered by cops during a “wellness check.” So many of us often feel left at a crossroads and suspended in some sort of “damned if you, damned if you don’t,” which yet again, causes choice-less and helpless-ness to arrive.

I’ve dealt with a fair share of suicidal folks in my time as a teen and also as an adult. Have walked people off the ledge of themselves and created safety plans together. I try but I am not a professional, I have no desire to be a messiah, or Father Time, I know my ass will often be thinking these same thoughts folks have expressed to me and have done so since I was a kid. I am aware there’s only so much one person or even a support system can do.

I am often saddened that in order to receive the help we need, especially for colonized people, where we feel safest: we often have to create it for ourselves within the communities we belong to. Whether it’s: a guide on “here’s how to get through being put on a 51/50,” or attending a support group, or being able to talk about suicide without being interrupted by some New Age toxic positivity bullshit savior complexes but rather responding with an: “I feel you” and someone is bearing witness for us to unload, making the weight of existence lighter.

I know that there’s no escaping having to interact with this system, we are forced to do it in nearly every facet of our lives. I also know that there’s no escaping the large need for communal care networks and peer to peer support to be created. Shit, I’m still figuring out how to do that in my own life, so who am I to go wagging my finger at anyone else and say, “communal care, communal care, communal care.”

Lately, a lot of what I write isn’t necessarily meant to come to any conclusion but rather present more questions, such as: How do we simultaneously focus on surviving the violence of capitalism, colonialism, and imperialism while also fighting against it?

How do we strike a balance of how much we should or should not interact with the state when it comes to a crisis?

I’m not saying there isn’t work being done surrounding these questions, there always is, and so many people of past and present whose work often goes unnoticed. These are just the questions that zoom around as planets in the orbit of my mind.

I want to know how I am expected to live in a world that is trying to kill me, how am I supposed to “get help” when it’s not affordable, how do I stop “those” thoughts from creeping in? What happens when sometimes “those” thoughts don’t bother me or scare me or even feel invasive but rather trickle in because I am musing on the few things I’m in control of in my life? I want to know why the state refuses to do jack shit…And I know why with that. It’s just…then how am I the one who is supposed to be seen as selfish, or ungrateful, for having a constant urge to become nothing but a memory some days? How is that helpful to even describe anyone whose committed suicide in the past? Here, I understand our survival doesn’t matter to anyone but each other — but still, I have a lot of questions and hardly any answers. I write this in hopes of starting a conversation.

The most I can honestly do is share what has helped me, hope it helps someone else or resonates, and that’s really it, that’s the unfortunate truth of it all:

-I know a huge part of why I am still here, the result of me actively choosing to be alive each day is because I don’t live under the weight of secrecy. Whether it’s sharing by writing this, or with my journal, poems, my loved ones, professionals, and friends. I remain open. Admitting something to another being is different than the thought rattling inside your brain and feeling the crushing awareness in solitude during a global pandemic.

-There are mornings where I immediately know that in order for me to get to the next day, it’s going to be one of those where just getting to the next hour is a “whew, a relief” — usually, I read fiction, watch something that can transport me somewhere, write, write, write, whether poetry or fiction or in my journal — just write, make a playlist, listen to music, call a friend and ask if we can talk for awhile, sitting outside with a friend, busying my hands — for me — my hands have got to be busy.

-From late February to late April of this year, I was intensely suicidal nearly every day. It did get to the point I was scaring myself. I questioned if I was destined to always be this way. Thought of a lot of musicians from my teenage-hood who died of suicide and thought: they tried so hard for decades and it just wasn’t enough. I do somewhat accept as long as we live in this world, suicide ideation will not be running short. I reached out to my psychiatrist and consulted about adding another antidepressant to my regiment (still under consideration on my end and I’m taking my time). I told my best friend. Who didn’t shame me. I told a family member. Who didn’t shame me. I talked about it when I could. Vocalized a lot of feelings surrounding the death itself, something many around me are used to cuz I had cancer for almost 4 years. And I downloaded this random app I heard about on social media called Finch and taking care of a little fucking bird in my phone and crossing off goals like “just be,” or “take a shower,” and writing down little bullet points about how I was feeling: morning, afternoon, evening, and night. And doing little breathing exercises. And listening to soundscapes. There’s also a very sweet Discord and Facebook group. So. All of it did actually help. Did it fix everything? No. However, it alleviated the weight enough for me to make it to each day.

-Stretching and meditation — I know this isn’t for everybody and may sound head-ass to some. I meditate in front of an altar for my ancestors consistently. I recently realized stretching was something I used to do from age 11–18 years old to cope with astronomical levels of stress.

-My meds, support groups, sleeping

-Crying, even if it’s days on end, which can truly feel so agonizing but it helps me. Again, this is what helps me so not meant to be universal or law.

-Letting myself be comforted — I unfortunately am full of a lot of pride but I also am learning to not be ashamed of any aspect of my life including suicide ideation — yeah, it’s scary, but it’s been worthwhile.

If you appreciated this, please consider supporting me and my life expenses:

Patreon: essays, poetry, book reviews, a monthly writing group, and more — the lowest tier is $1

Venmo: ItsWalela

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I will close with the words that inspired me to consider writing these words down and publishing them:

“And when the sun rises we are afraid

it might not remain

when the sun sets we are afraid

it might not rise in the morning

when our stomachs are full we are afraid

of indigestion

when our stomachs are empty we are afraid

we may never eat again

when we are loved we are afraid

love will vanish

when we are alone we are afraid

love will never return

and when we speak we are afraid

our words will not be heard

nor welcomed

but when we are silent

we are still afraid

So it is better to speak

remembering

we were never meant to survive.”

-Audre Lorde, A Litany for Survival

As we all know, Will Smith slapped the hell out of Chris Rock at the Oscars over a joke made about Jada Pinkett-Smith’s appearance — specifically referencing her bald head from alopecia: an autoimmune disease. I saw many Black radical peers of mine break down certain concepts from certain ideologies, theory, books, and more to share some real concise thoughts to contribute during what is considered a massive “pop culture moment.” Meaning…everybody and they grandmama are talking about it.

Now, moments like these are important in the Black community especially. Why? Well so much of “amerikkkan” culture is actually our own being appropriated. And Black celebrities are deeply meaningful to a majority of the Black masses, including the Black working class masses. So, when famous people, who look like us, are being talked about — actually let me correct that: are the main topic of conversation across all media. Best believe many of us plug in. Does this make celebrityhood or the cult of celebrity, okay? Absolutely not. In a perfect world, we wouldn’t have celebrities. In the worlds many of us hope to strive for and envision, celebrityhood dies.

However, we are not there yet; not even close. The reality is: celebrities exist, they wield a whole ton of wealth, and a fuck ton of power meaning they have an instrumental influence on the masses. I mean think about it, why is it a big deal when a celebrity endorses a certain political candidate? Society, as is, relies on celebrityhood to be something worthy to aspire towards. It’s been served to Black working class folks on a platter saying: this is the ticket out the hood, this is the ticket out of whatever material conditions you’re experiencing. Celebrities are deified, glorified, and it’s not without intention. Circling back to what I asked, why is it a big deal when a celebrity endorses a certain political candidate? Because celebrities have that much sway among the masses to potentially create a wave of voters pointed towards another leader within or of the US empire. Again do we want this to be a reality? No! But this is what celebrityhood looks like right now and that’s exactly why it must be talked about. It also consists of many, many, many pop culture moments where we see either shocking or horrifying shit play out that show the very failures of a settler colonial state (quick example: #MeToo & Harvey Weinstein).

Knowing that, pop culture moments can be seen as the access point for many people to first have a realization such as, “oh the Academy is an all white institution and has excused tons of violence from white men, never thought about that.” Or where people run into certain words like: “ableism” and “misogynoir” for the first time. Shit, even with disability - a large number of people are still learning to not associate disability with whatever messed up stereotype that has been fed to us or the fact disability is not at all inherently negative. In moments such as this, people are confronted with ideas that go against what they were taught. They are uncomfortable but willing to listen, or uncomfortable and engaging, or simply watching in silence and observing. Regardless, “pop culture moments” are important because they can serve as a gateway to the beginnings of radicalization.

Pop culture has always held importance among Black people and so the conversations that follow each moment holds heavy importance. Usually what we see is that no matter the influence and wealth, ain’t nothing stops us from being Black at the end of the day. It’s a sobering moment for an enormous number of people who aspire to, look to, and protect celebrities constantly. Some of you reading are probably thinking, “well obviously.” I ask you to consider that while the internet is a vast place with access to more information than ever. We also must consider social media is a place where many of us get our news nowadays, it’s where celebrities live, it’s where internal internet jokes are made, and so in effect, we can often find ourselves in a bubble with people who think similarly to ourselves. When a “pop culture moment” happens, that bubble has a very likely chance of being burst.

With a burst bubble, we got the potential to nudge some folks to a different way of thinking — a way that’s actually rooted in questioning, “why was such joke made,” “why was that joke not in good taste,” “why is it wrong to make fun of an autoimmune disease especially on a large platform but also how does that impact Black people in my own life,” “why are non Black people so committed to policing Black peoples reactions,” “why are we always told how to act by white people?” “why do we care about celebrities so much?”

Many of us understand that there are times we gotta meet our own people where they are at and push. Moments such as these are probably the worst time to descend from the sky speaking on theory and ideologies in ways that are inaccessible to our own kin with big ass words. I think where many people’s frustrations lie is that we do not have a revolutionary culture. A revolutionary culture is essential in propelling a movement forward. The work that many Black radicals attempt to do is create the foundation for Black revolutionary culture to be more widespread. Radicalization is but a seed, so a moment such as this at the Oscars is but a seed too, actually there are multiple seeds. But seeds bloom — and those take time as well. It’s unfathomable to actually believe every single person in our community is going to immediately understand or be willing to understand what ableism is, what is misogynoir is, the double standard on violence, or how there’s even more irony when this entire government is violent from its inception and onward — so who are they to determine what violence is. But we can try to jumpstart that process of understanding.

I remember the latter question was one I was asking in 2016, after what? Pop culture commentary. And that was how I was handed Assata Shakur’s autobiography. Following that, I had more questions, which led me to: Wretched of the Earth by Frantz Fanon — specifically the first chapter: On Violence. Side note: there’s a really good documentary version of this called Concerning Violence with Lauryn Hill doing the voice over and also a picture book I found at The Last Bookstore in Downtown Los Angeles years ago. From that I was able to understand when violent systems are created, they will not go quietly and peacefully. The quote, “colonialism only loosens its hold when the knife is at its throat” immediately comes to mind. That ultimately opened a plethora of writings by Black revolutionaries and cultural workers who spoke on formations, movements, and moments within the history of Black liberation. From Audre Lorde and Zora Neale Hurston to Safiya Bukhari and Butch Lee. To James Yaki Sayles and Nkrumah to Kwame Ture and Amilcar Cabral. And so on and so forth. I learned there’s a tradition of fighting for our self determination that has existed long before I ever imagined.

To this day, the learning has never ended, but it did start somewhere. To this day, I see the need to push and expand our analysis from what it once was to what it could be and I’ve been lucky enough to watch that very necessary and hard work be done. From weigh-ins on pop culture to grassroots organizing to creating multimedia as agitation propaganda as a means of helping folks question the conditions we live under, to engaging in popular education and so on — but each aspect holds importance and will continue.

There are many of us who dream of a life better than this yet don’t have the names for experiences we thought were “normal parts of life,” that are actually abnormal. Such as: the hyper focus on a grind culture led to me learning about productivity, capitalism, and wage labor. Or me sitting while struggling to receive care while battling cancer in 2017, asking why does nearly every Black person I know has lost a family member they know in the hospital? That’s how I learned about medical racism, neglect, and medical apartheid’s connection to enslavement. Or why do Black people experience police brutality? Which led me to understanding the function of the police being to protect property, the rich, and the government and its history with enslavement — with that, suddenly I understood more deeply how it’s not “accidental” that Black people are being murdered — it’s intentional.

I could keep going but I think you all get it: I wouldn’t have started asking those questions and continuing to learn if it wasn’t for Black people who I didn’t know, taking the time online to explain in a tweet or Facebook post why certain events unfolding held different consequences for Black people. For us. I didn’t learn everything I have over the years in one post — but one post was just enough for me to have a “lightbulb moment.” A seed was planted. And then it bloomed.

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CW: Ableism, mention of violent acts towards disabled people, mention of violence in general — if you feel like it’s too much to tackle, don’t force yourself to ❤

My best friend and I were sitting up watching Voyeurs a few nights ago. It follows the story of Pippa and Thomas, both played by Sydney Sweeney and Justice Smith, who move into an apartment across the street from a couple whose windows remain without curtains. To cut to the chase, Pippa and Thomas both start spying on the couple. What begins as playful guessing for the couple, turns into a mode of expressing taboo sexual desires, a mode of “entertainment;” for Pippa, it becomes a savior mission as she is led to believe the woman living across the street is abused by her husband. It escalates with many twists and turns, Thomas is murdered but it’s framed as a suicide, the wife across the street commits suicide after learning about her husband cheating, and Pippa ultimately has sex with and her portrait taken by her dead friend’s husband (who is presented to us as the abuser). Welp, turns out Pippa and Thomas were leasing an apartment from the couple across the street who observed them equally back. It was performance art, to see how far strangers will go to look into another person’s life. Pippa sees justice as luring the couple out of their apartment, drugging them at the optometry office she’s employed at, then blinding them. Pippa felt an “eternal misery” of blindness was a proper punishment over death when it comes to suffering the consequences of ones actions.

So, from that alone, what can we deduce about disability? It’s a punishment, it’s a bad thing, and it’s a sentencing meant to cause more suffering than death itself. As if being disabled, alive, and just existing, is not even a “worthwhile” life to have. It made me start thinking of the multitudes of ways disabled people have been and continue to be portrayed in the media. Disabled people are too often depicted as villains, scammers, the pun for a poor joke. Then on the flip side, the “positive way” we are portrayed to the media relies on an extreme polarity where disabled people can also be your inspiration or make you feel grateful you’re “not like that” or “if xyz disabled person could get through this, than so can I.”

In a capitalist society that systematically oppresses disabled people, many of our actual stories fade to the background, because we are useless labor — we can’t hand over our bodies to be exploited in the ways capitalism deems necessary. Knowing that, it’s not surprising just how poorly depicted disabled people are: we aren’t people, we are a lesson on good vs. bad morals, we are often the very thing the viewer does not wish to be or fears to be. Now, are the disabilities of many characters in TV/Film constantly highlighted? No. And we don’t think anything of it, because nothing is said of it, and that is problem. We come to naturally associate villains with disability without even realizing it.

For instance, Sleeping Beauty was one of my first favorite Disney movies as a young child. However, Maleficent’s backstory emerging in 2014 was enlightening. No longer was she an evil woman with a dragon as I once understood her to be; but instead, she is an older, burdened fairy whose wings were brutally clipped by Aurora’s father. This was done in order to inherit the throne after his father passing. Maleficent was manipulated and without her wings: was effectively disabled hence why she uses a cane as both a mobility aid and weapon.

Did I ever think twice about it back then? No. It took until I started acknowledging my own disabilities, at 23 years old, and dealing with my own cancer battle to even truly understand what disablement means. So what about all the other people who aren’t disabled? Do they think twice? No. Can I blame them? Not necessarily when it’s an indoctrination for ableism wrapped super nicely. Does it affect how disabled people are treated? Absolutely.

More than 26% of people who live in the U.S. have disabilities, that amounts to roughly 1 in 4 people, and these numbers account for the people diagnosed, so that percentage is likely higher. Disability becomes a reality for many of us as we age and age and age — the elderly are associated with disability too, ya know. It was through further conversation with my friend, we started realizing just how many characters whose stories we grew up with who are associated with “bad” are also disabled. We ping ponged characters from the films throughout our childhoods and shows we’ve watched as adults, it was a list. A list way too long. Disability has always, and continues to be, ultimately perceived as a moral failing. What does that communicate to young disabled children? Disabled teens? Disabled adults? Newly disabled people? Disabled elders? We are inherently bad and we are well aware the world views us in the same vein.

“Historically Disabled Villains go right back to the beginning of the Folktale and Fairy-tale tradition. Many fairy tales appropriate this image of the elderly and the disabled assuming the role of villain; they are usually driven by jealousy towards the young and beautiful counterpart or they may be cruel and cunning like Rumplestiltskin. Now this idea of the disabled villain being jealous of the non-disabled and thus turning their hatred towards them has remained with us throughout the history of literature, film, TV and stage.

A strong consensus that runs throughout literature is that a person with a disability is innately driven towards evil due to their disability. Many earlier Puritan texts suggested this idea, that a child who was conceived with a disability is being punished for being innately immoral. However, one of the most famous examples of a Disabled Villain who believes their disability gives them soul licence for their misconduct is William Shakespeare’s Richard III.” — Emily Davison

Over hundreds of years we’ve watched disablement stray from fantasy into movies and TV about day to day life. The message is still the same: so we are constantly inundated with it. Disability is always a moral story — it’s either “don’t become that bad thing, ugly, evil, thing” or, in more recent years, disabled people are meant to better those around them — they are used as a tool for inspiration rooted in pity.

One of the immediate films that came to mind was from my childhood as well: Tyler Perry’s Diary of a Mad Black Woman. Now, that film has a lot to unpack but I’m going to focus on the villain. The villain of Diary of a Mad Black Woman is a cold heart callous attorney who is extremely wealthy but also has an entire family with another woman. He kicks out his current wife, Helen, and instead moves his girlfriend in. Boom bam. He is our villain. A “turning point” in this film is when our villain becomes disabled — he’s paralyzed by being shot multiple times by a disgruntled client. He becomes paralyzed and needs round the clock care. His mistress and family leaves him, but his ex wife stays. Helen views his disability as something that makes him no longer a threat to her safety as she was once abused by him.

What unfolds is: an ex wife volunteering to care for her ex husband but largely to have revenge for his abuses. The scene this movie is most famous for is him being “karmically” wheeled into a bathtub and almost drowning as his ex wife watches while smoking a cigarette. This is viewed as a deserving punishment by the audience and is intended to be. Am I caping for abusers? No. What I’m illustrating is how what’s viewed as a fit life long punishment is: disablement. There is a way of making a commentary on abuse without resorting to that infamous scene / plot line.

Revisiting this film as an adult also helped explain why I felt I must have “deserved” cancer for years rather than being like “yeah, it’s a DNA mutation and what about it?” Consequently, also explained why I felt I deserved neglect from my caregiver. Was I abusive? No. Did I do something bad to my partner? No. It was the direct impact of films like this that influenced me believing I couldn’t possibly conceive having a disability and any thoughts about disability were ableist as hell. It was the direct impact of media like this that also made me feel I was deserving of every bad thing.

Now, while I got you here with cancer…You know I would have to discuss Squid Games. The elderly love-able quick witted character who is later revealed as the villain happens to also be battling brain cancer. He had previously hosted the Squid Games and planned to pass them down to his son. When asked why he participated, why even create something as heinous as this: he said he just wanted to have fun. Similar to Shakespeare’s Richard III, this this type of “disability representation,” again renders a human into a monstrous, apathetic being, willing to commit atrocities, and who is to be feared for their malice knows no limits.

We, as disabled people, are told constantly by the characters written about us that: We are miserable and must live in hopes of “becoming better” physically or proving ourselves as “good” by a bullshit standard. Reality is, disabled people can be shitty, yes, as can any person on this planet. However, the entirety of its demographic is not and yet there’s no room for the consumer to even consider humanizing disability because of how it’s been historically portrayed and morphed.

Yet another Disney film but still relevant, Peter Pan — Captain Hook is an amputee survivor who has a hook for a hand & he is the main antagonist — willing to harm children. Harvey Dent aka Two Faced from the DC comics and films, is in reality a survivor of an acidic burn attack and that is what turns him from a good man, a good lawyer into a super-villain.

The dozens of neurodivergent coded characters used for puns or as over exaggerating, weird, uncivilized people. Easiest example I could think of: Elf. Buddy loves Christmas, knows extensive history and facts about the North Pole, and loves sweet food. He’s immediately associated with child-like qualities and incapable of surviving society in his own “delusions” (because in this world Santa is actually real & that’s actually a critically important fact to keep in mind).

And while there are many more examples, last but not least: Split, a 2016 psychological thriller directed by M.Night Shyamalan has the antagonist be a kidnapper/killer with Dissociative Identity Disorder and said to have 23 personalities. He kidnaps three innocent girls and the horror of the film is: his disability being a threat to safety and haunting to watch. Doesn’t make it easier to destigmatizing the lesser romanticized mental illnesses with films such as that.

You see where I’m going with this? When non disabled people write about disability as punchlines — they either are aware and do not care or genuinely don’t understand how their work is going to be translated by various demographics. When non disabled people write about disability as inspiration porn — they burden those of us who are disabled as lighthouses of wisdom or the reminder of “be grateful for what you have” for we have nothing. When non disabled people write about disability there is certainly a higher chance of the villainous character having a “disturbing” disability.

What also happens frequently with disability in the media is that non disabled actors will play in roles meant for us. The easiest reference to point to as of late was Sia having Maddie Ziegler act as an autistic child for her music video and short film. When presented with critique, Sia shut down, she had “tried” to work it out with one autistic actor and essentially failed to meet the accommodations necessary or even look for a second autistic actress. Sia, in her self righteousness, thought she was performing a favor on behalf of a community she did not nor did she care to fully understand.

For this reason, disabled writers, actors, musicians, artists, and people need to be in the forefront whether it’s stories told about our conditions or instead we simply exist without question. Some of the shows who have done a better job of exploring this is:

-The Sex Life of College Girls on HBO Max — while not a lead character, there’s a member of the freshman class who is a recurring character, Joceyln, played by disabled actress Lauren ‘Lolo’ Spencer, who is a Black wheel chair user. She exists within this universe simply as herself, there’s no pity party, she doesn’t want one, she isn’t our inspiration, and she for damn sure isn’t the villain. She’s unapologetically herself and frankly, a scene stealer, in the best way possible.

-The L Word: Generation Q on Hulu — Jillian Mercado’s character reflects her in that she too has muscle atrophy, she also is queer, and Black, and she too has sex. It was a massive moment in television for her character to come to life as Mercado has said in interviews she had no representation of physical disability as a child.

-Sex Education on Netflix — this was the season everyone was talking about on twitter because sex with mobility aids was portrayed accurately. Beyond accurately, also naturally, organically, and we get to see a disabled person be desirable — and not one dimensional. Actor George Robinson’s character is well rounded enough to where he can’t be a villain. Every character on the show is intentionally equally unlikeable and like-able.

-Special on Netflix — written about life as a white gay man with cerebral palsy, the show’s creator and lead actor, Ryan O’Connell humanizes disabled people by showing how constantly ridiculous and ableist society is. He also shows himself navigating through it — making it feel possible to do. His character is fully human meaning capable of a range of emotions and a range of conflicts. It truly has one of the best opening scenes poking fun at the idea of disabled people being scary when a child is shown screaming upon learning Ryan has a disability which is why he limps.

-Everything’s Going to Be Okay on Hulu— written by and starring Josh Thomas has two seasons of a household where half of the members either have autism and/or ADHD while the others are neurotypicals. Nicholas is an Australian white gay man in his twenties. “He goes to visit his American father and two teenage half-sisters in Los Angeles. During his visit, he learns that their father is terminally ill and wants Nicholas to become the guardian to Genevieve and Matilda, because their mother is already dead.” The show navigates what family can look like and be like outside of the “norm.” And I especially appreciated the emphasis on the fact disabled people work their ass off to try to fit into a world not designed for us, and the show drives home the point that we should exist simply as ourselves — which we see this family do in the comfort of their home, making it feel. We see this especially with Matilda’s piano playing or parallel playing with her girlfriend, who is also autistic. It’s also shown in how Nicholas does not live up to having a perfect “adult” room — his room is colorful and reminds me of a disco ball. Having a room like this as an adult would be generally considered “immature” or “not normal” but it works because it works for Nicholas.

What I’ve found interesting as a link between the five shows is: desirability. Sex is a common theme throughout. These shows almost point the mirror back to the viewer and ask us to consider why disability is immediately associated with being unattractive, unloveable, and undesirable. With being helpless, dissatisfied with life, or mean. Shows like this help break away from the harmful and hurtful tropes that have played out for quite literally hundreds of years. And even still, we see how desirability often isn’t enough — there’s more elements to our stories that give greater understanding to the our experiences.

Of course, I still find within decent representation it almost always largely consists of white disabled people. What I am excited about is the future. Which is why it is important to acknowledge actresses like Lolo Spencer and Jillian Mercado being casted because disability, itself, is often associated with white people. It’s a white person’s story to tell. I believe we are moving away from that year by year and finally, we are moving towards seeing: disability as just that — disability. This doesn’t mean we don’t experience neglect or medical racism or ableism and so on and so forth, but rather: disability is not a moral character flaw. There are thousands of brilliant stories being told and waiting to be told to reach massive audiences. I can’t wait for the day we can experience them as a community.

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ID: the word survivor bracketed and split up in bold font with a smaller cursive type font reading: to beat the odds, one with great courage, and strength, a true inspiration (Image from: Google Images search for “cancer survivor” from Mendocino Coast Clinics)

*That image is somewhat satirical for me and my weird humor considering how much I hate inspiration porn but it’s fitting.

Content Warning: This piece speaks extensively about suicide ideation, mental illness, chronic illness/disability, cancer, survivor’s guilt, death and medical trauma.

It’s 2021 and a random day in September. I’ve been crying on and off for multiple days on end. I am engulfed in dread, feelings of worthlessness, questioning if I’m permanently broken, or if I will ever experience life as I wish. The trauma I try to hide spills out everywhere — what the fuck just happened? What was this transplant? What was cancer? What was that diagnosis? Why were you failed so many times? You forgot 4 years have passed since your diagnosis, welcome to being 27 — I guess? What spills turns into a river, a lake, then an ocean in my living room. I barely tread water with my panic attacks. If I’ve experienced some of the lowest life has to offer, then received the miracle of a matching donor to cure the leukemia I had been battling for years, the transplant went well, and I’ve been offered things that I could’ve only dreamed of as a child, then why is that not a knockout high to me? Why is that somehow not enough? Why do I think about offing myself to the point I’ve scared myself back into therapy?

There’s shame when we, as cancer survivors, are unhappy. When we admit : yes, we are depressed, anxious, experiencing PTSD. Yes, we cannot adjust to life without the fear of relapse. We are terrified to do the chemo, the radiation, all the pain over again whether by immersing ourselves in past memories or in the fear for our futures. Everything feels impossible — like a slow drowning. Our shame is rooted in so many things — we think of how we once dreamed to be in remission so therefore we are ungrateful or we know how many others died along the way & so we aren’t using this second chance at life properly — like maybe we should’ve been the ones to die instead (aka survivor’s guilt). We are told it’s a “fight” “a battle” — we are survivors now so therefore we are gladiators, we won it all. To many, we are considered badasses or inspirational or whatever else, yet somehow it doesn’t feel like it for many of us. It just feels…empty.

Last year in 2020, the same month: September, I was crying about how my one match, for the stem cell transplant I needed, delayed donating by 6 months or more. I felt suicidal then too. Because what was the point. There’s no lesson in this kind of grief. What kind of living is this? It’s not enough. So, you can imagine I was pretty fucking surprised that I’ve been feeling even more suicidal this year than I was last year. I look at myself with disgust some mornings. I feel as though I’m malfunctioning because I should be happier than ever. My negative self-talk rears its beastly head as I punch down on myself over and over because I am “just an ungrateful shit.” My negative self-talk is also really good at forcing me into memories I am not ready to feel — like how 31 days in a hospital in isolation for a transplant changes someone — I prefer to not think about it.

The skill many of us younger patients develop is repressing. We bury. We had tunnel vision through our treatment because we had to make it to the other side of hope. We had to be able to ensure our future. Because cancer makes us sit still as all our peers move on, the world keeps turning, and we just want to keep up. Because we haven’t even gotten to experience what this life is even about. But when our future arrives, we have no idea what to do with it. That is a testament to the gravity and reverence that shrouds the golden ticket of another chance at living. For me, it’d be my third time. Often, I joke about how I’m a cat with 9 lives but I’m usually consumed with: why am I the one who gets the chances? Is it a lottery? Is life pre scripted and God watches our “episode” when it comes on? Is it fate? All of the questions ultimately boil down to: Why the fuck am I still here?

I have been told by many people that I’ve been a comfort for them through their cancer care or care for other disabilities, they talk about how me being frank and open helps them feel seen — like they aren’t alone, they talk about how my survival now gives them hope — I’m living proof of going through the ringer and making it out alive — that it’s possible to live beyond a diagnosis. I was diagnosed with advanced stage leukemia in 2017 and because I didn’t see anyone who looked like me or who had my politics talk about cancer, I decided to be what I needed so that hopefully someone else wouldn’t have to experience what I did in the first few months of my cancer battle. I became comfortable talking about my leukemia, how shit my insurance was, the instances of medical neglect and medical racism, the highs and lows, the mini triumphs, the chemotherapy failures, taking what I learned to navigate the medical industrial complex and sharing tips for self advocacy, and finally searching for a donor, transplant, followed by recovery. Some people have been following me since the start, others since 2018/2019, or summer 2020 many people trickled in. My cancer has played out in front of an audience that is bigger than my social media following as my story has been shared over and over by people & platforms with far larger followings than my own. I always said, “if I could just touch the life of one person then my job is done.” I’ve been told by more than one person I’ve helped them. Eight other lives have been saved because of people registering to be stem cell donors with the national registry under my code (text itsWalela to 61474 for more information). I should be proud of myself, I should be happy, but everything flies right over my head. I feel numb because when things are good or when nice things are said, inevitably something bad will happen — trauma will trick us into believing that.

I’ve been fine with sharing about my cancer experience to a certain extent. Perhaps because I share more than the average person then I guess what I do is considered vulnerable but there’s always this gnawing inside me, where I want to snap into myself when it comes to mental health & cancer. So much of cancer treatment, even at the best of facilities, is focused on getting you through chemo, radiation, surgery, transplant, whatever protocol and seeing you get into remission. It’s all focused on the body. Yet, our mental health is part of our overall health, it lives within our bodies too. In my experience, social workers who’ve been assigned to me have failed me in finding resources no matter how often I’d ask (likely because they have way too many patients on their plate). When it’s discussed in oncology or transplant units, it’s “exercise” and “eat well” — even on far too many websites dedicated to cancer survivor support. But we all know, those two things are not the end all, be all, of achieving emotional & mental stability. So we are left alone & often feeling utterly directionless.

When the treatment is over, the remission is achieved, and the dust settles. There’s nothing. No pamphlet. No “here’s what to expect.” Nothing. Because living *should* be enough, I guess. Nevermind that we endured being so close to death we could smell it, it was palpable, some of us had to say where we wanted to be buried (me) because it was thought we wouldn’t make it, advanced directives were regular, random and inconvenient hospitalizations were normal, many of us experienced financial stress beyond what is comprehensible and continue to in survivorship, and felt like zombies in our own home where the days blended together. Many of us try to grasp at straws for normalcy but there isn’t anything normal about this: our life has been divided into Before Cancer and After Cancer. We are not and never will be who we were before. Our bodies are not the same. For many of us, they even look significantly different. There is no normal after cancer when some relationships were entirely destroyed because of it, when careers have been halted or are in ruin, or when the slightest bruise, cut, headache, stomach pain, anything that we know to be a symptom for our type of cancer sends us into a tailspin. I mean, I can keep going but the point is: this wasn’t a walk in the park and it still isn’t. It is absolutely a battle for your life when it comes to cancer treatment, it’s mind over matter constantly, it’s shutting off emotions at times or only being able to feel surface emotions like rage masking as deep grief. How can we ever expect that a cancer survivor is going to simply “be okay” after all that?

If I’m going to be truly vulnerable about my cancer experience, then I seek to be vulnerable in my survivorship as well. I am not okay. I will be eventually. But I am not okay. I have been extremely suicidal on and off for months now. I’ve felt alone, ashamed, guilty, and frankly afraid to even admit that as my reality. There’s so much complexity to living. & heavy is the duty we carry to “make something” of this hell we experienced (especially during a pandemic).

In the 8 months that have passed since my transplant, new memories have popped up from years ago, resentment I’d been burying resurrected itself, every day I’m not doing “something” — it feels like I’m wasting time or I’m wasting this opportunity. I think of all the people I knew and knew of who died in my 3 years and 11 months of battling leukemia — how badly each of them wanted to live — and I instantly feel like a brat. But, mental health and mental illness is not bratty or selfish. Inner turmoil is the weight of being human. When we are being told we are supposed to be okay constantly, even by our own medical care teams or families/friends, we try to convince ourselves of the same myth. For many of us, it is a silent suffering out of fear of how we appear to others: we don’t want to concern anyone, or we don’t believe our feelings are worthwhile, or we downplay, rationalize, cry alone, have a breakdown or 10 alone, perhaps even start doing and acting in ways that are uncharacteristic to ourselves such as: self sabotaging.

This is a common reality among cancer survivors. For me, having cumulatively 80k followers online makes an undoing, an unraveling feel impossible with cancer or not. There’s an expectation of me. A silent projection of the “strong Black person” trope then add in being neurodivergent, having anxiety and depression and PTSD…There is nowhere for me to set my load down because I appear to carry it so well. I have fed into this because for me, I don’t want to be a bummer, I don’t want to make anyone feel worse; I want to bring comfort, and help motivate others in my shoes. I’ve also come to realize that I want people to be prepared for the very real possibility: survivorship is not going to be how you pictured or how it gets portrayed at all. It just won’t be.

I’ve found myself censoring what I literally just wrote in the past because: If I’m such a source of comfort, then I certainly can’t share that about myself; but it’s fucking true. We need to be allowed to say the shit more often: Cancer patients and survivors experience suicide ideation and/or have committed suicide, we have mental illnesses, the battle is thick with layers of complex trauma. Many of us had mental illnesses going undiagnosed prior to our cancer diagnosis — those symptoms swell though. And at times, it truly feels like our heads are getting screwed off or like we simply can’t ever be ourselves again. Many of us even fall head first into identity crises such as: who am I without cancer? For me, I was 23–3 years from 20 years old at diagnosis, now I’m 27–3 years from 30 years old, and I’m seeing, watching, learning how much I missed out on. What I didn’t realize is that those 4 years are a pretty pivotal, transitory time that I was unable to experience to the fullest — shit, if at all. Now, I question my clothing, how I talk, ask how the fuck to work Tik Tok, I realize there’s even music, TV, and movies that I missed out on, jealousy jealousy by Olivia Rodrigo becomes my theme song some days as I wish to be further along in my life, and in the midst of all this: I’m unable to relate to a majority of people my age but still adulting feels like a whole college course I missed. The longer I’ve gotten adjusted to survivorship, that list continues to grow longer.

There is far too much pressure for cancer survivors to live up to being these badass warrior beings as if we aren’t people, as if we can’t deteriorate. There’s an inherent pressure that isn’t even explicitly said but trust me, it is felt. And yes, the warrior metaphors can be beautiful and cute and empowering, but there’s a dehumanizing element to it as well. Because as survivors, we are instantly assigned to be role models, we are the strong people who conquered death’s thirst for our souls, we are who people look at and say, “damn they’ve been through so much, makes me grateful for my own life.” Yes, our mere existence and the trauma that comes with it becomes motivating factors to everyone else: never end up like how we did. We are the underdogs, the comeback story, our lives play out on social media like a damn play on Broadway. We aren’t treated as people but as a symbol of hope. & I have no problem with symbolism, but I do have a problem being reduced to simply a concept rather than an entire human being.

The best way I’ve been able to combat any of this is to enter therapy again, which I can hardly afford, and finding a solid match took a good while. I’ve entered couples counseling with my long term partner as cancer did impact our relationship. I try to be honest and consistent with my psychiatrist. Try to prioritize what makes me feel good: reading, writing, journaling, watching documentaries, playing this stupid Harry Potter game on my phone, re-acquaintng myself with Spanish via DuoLingo, meditating, praying. And sometimes, even all that doesn’t feel like enough. So when that happens, I reach out to a friend. Usually my best friend. Or I sit under a weighted blanket and cry. Or I sit on my balcony. I’m in a support group I drift in and out of as the sessions I’ve been in tend to be filled with comfortably wealthy white people with good insurance — yeah we both had cancer, but our worlds do not relate. I don’t have an answer for anything. All I know is that we are deserving of far more help navigating the aftermath of cancer and stitching our lives back together. I’m just, I don’t know, I’m on my corner of the internet, sitting at a table in Los Angeles, typing this “essay” attempting to share how I feel, what helps me, yet again hoping I’m not alone and hoping others are not alone either in reading this. I don’t have a marvelous conclusion or incredible epiphany — this is a snap shot at reality. But I will leave with this quote that emboldened me to write this thing:

“Survival isn’t some theory operating in a vacuum. It’s a matter of my everyday living and making decisions. How do I hold faith with sun in a sunless place?… I have to stay open and filtering no matter what’s coming at me because that arms me in a particularly Black woman’s way. When I’m open, I’m also less despairing” — Audre Lorde, A Burst of Light and Other Essays

Here’s a list of resources I’ve found helpful:

The National Suicide Hotline: 800–273–8255

TEEN LINE (if you are 19 and under): 310–855-HOPE

Cancer Support Community Helpline: 888–793–9355

Help With Cost of Meds: https://www.needymeds.org/

The Sam Fund offers financial help but I’ve also benefited from their resources list: http://www.thesamfund.org/

Following people online who are in a similar situation to me by looking at hashtags on Instagram related to my cancer type or transplant — I’ve actually made a couple friends this way

Please consider supporting me as I continue my recovery by either joining my patreon (lowest tier is a dollar) or donating to:

Paypal: ItsWalela@gmail.com

Last week, I found myself breaking down into a panic attack when realizing all the Lysol disinfecting spray online and in the greater Los Angeles area was sold out. My panic attack wasn’t rooted in the common hysteria linked to COVID 19, my panic attack was rooted in the fact I was becoming barred from having access to the products that keep me and have KEPT me safe on a daily basis since my cancer diagnosis 3 years ago. This all resulted in me going on Twitter asking for help — I was able to connect with multiple people who have since sent me the specific Lysol I needed, Clorox wipes, and more.

Even after my disinfectant needs were met, I still was experiencing various people messaging me saying they’d go to the fully stocked stores in their area on my behalf. The organizer in me paused and thought, “Well, I’m not the only person part of this at risk population experiencing a lack of access, what can I do?” And a Twitter thread (now transformed into two Google docs) was born where immune compromised people could make their needs known and people willing to help immune compromised people could be connected to others in need. At the same time, several other people and groups nationally were undertaking mutual aid projects and significantly helping their communities.

Now, we are seeing more conversations surrounding mutual aid and most importantly: we are seeing the self directed efforts of solidarity. Mutual aid is an anti capitalist practice and a liberatory practice for disabled folks. What’s keeping myself and many other disabled people alive right now is not state institutions or a capitalist market. What’s keeping myself and many other disabled people alive right now is instead solidarity efforts from mutual aid to social distancing.

Mutual aid has the aim of not just compensating for institutional failures, rather its aim is to challenge and subvert the entirety of the system which directs these institutions — that system being capitalism-imperialism. For example, the “failures” embodied in the lack of disability justice aren’t necessarily failures, they are the consequences of a system which measures our worth as human beings in terms of how much value our labor can create for the rich. In the context of this capitalist system, “disabled” becomes a measure of to what extent a person’s labor can not be exploited. This takes on various forms but the common thread is a lack of regard for the lives of disabled people.

For example, I’m 26 years old, Black, non binary, queer, and a cancer patient who lives in South Central Los Angeles. I’m immune compromised meaning I can’t work full time and pay my bills either via fundraising or doing small college gigs once or twice a month. Based on my previous paragraph, it’s obvious that a capitalist system views me as disposable on a daily basis to begin with. Now, add in a global health pandemic, people not taking social distancing seriously, everything closing, being self quarantined even more than usual, a gig economy going completely underwater, yet somehow bills are still due — I, as a disabled person, am not meant to survive. Mutual aid makes survival during a COVID 19 pandemic a possibility for myself and many other disabled people because it prioritizes community care and our livelihood — from getting the medical supplies we need to fundraising efforts to grocery store and pharmacy runs and more.

Mutual aid goes beyond crisis pandemic modes though, it’s meant to stimulate self directed modes of autonomy consistently. The practice of mutual aid can fundamentally shift community relationships and interpersonal relationships by emphasizing self motivated reciprocity (not charity). Imagine how much mutual aid can improve the lives of disabled people and frankly all community members on a day to day basis. Mutual aid asks us to humanize the same people capitalism will call useless. As a practice, it can be an essential introduction to radicalism / radical politics — especially in working class communities.

While this global health pandemic shows just how fragile and nonsensical capitalism is, it’s also important to push for continued organizing during and after this crisis. The same systems that have been created to starve us of resources, exploit us, dispose of us, commit acts of violence against us, and eradicate our communities, those systems were created by people and therefore can be replaced by people too. Let’s continue prioritizing the safety and survival of all our community members and continue to allow mutual aid to be a pathway for The People to become organizers too. Let’s also prioritize accessibility so disabled organizers and disabled peoples can be included in our movements.

Resources:

COVID Info Drop: https://docs.google.com/document/d/1kanSvePoQCRqx_cbaE_JA6VEKakAlwhgkd5pjrjSy0A/edit?fbclid=IwAR04RIEc0gU74BELEyGpGVWLYnuHLepwfRKLLCLirqhNcSvRr4KMFV42Onw

Immune Compromised People in Need: https://docs.google.com/document/d/1xdmHQVS8wxAiApUM53MYMq1Atiqm5UsLGQlTp61oNcM/edit

Willing to Help Immune Compromised People In Need: https://docs.google.com/document/d/1u6JQDlkjEWaYtfTxQ54gshOjOl9Fc76UCi5jVYYGn9E/edit

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Before we start, here is a glossary of the major terms I used so we can all be working from the same place of definitions during this essay reading experience:

“Holistic” Ableism: An accidental term I made up in a rant to concisely describe the ableism many “holistic” figures with status, ie social media influencers or self proclaimed gurus in communities, uphold in order to set themselves up as people with “special exclusive knowledge” that others, namely disabled people, cannot receive from anywhere else (especially western doctors). They often reduce disability to a personal failing ie dietary, poor self care, believing the diagnosis as truth, and more nonsense. Doing this usually results in cult of personality — making many of these figures impenetrable from critique and they are able to finesse hella money by taking advantage of the desperation and vulnerability people have who are really desperate to no longer suffer. The holistic is in quotation marks because these people actually do not uphold the principles of holistic care.

Ableism: is deeply informed by capitalist logic. Capitalism requires labor power. Under capitalism, disabled people are made to be disposable — it labels anyone who cannot produce value within the process of commodity production as being disposable. That logic has negative consequences for disabled people.Ableism is a set of beliefs and practices designed to discriminate against disabled people and make disabled people easily disposable — especially those who are colonized. It also is a refusal to humanize and empathize with the unique struggle of disabled people but instead prioritize able bodied people.

Fauxhemian: A person who is not genuinely well informed in holistic traditions, practices, and medicine. Is usually very spiritually confused too. A great example = New Age “practitioners” — for more detail on this example and its application to the term fauxhemian, read a thread by me on Twitter complete with sources: https://twitter.com/itswalela/status/1125078605808070661

Colonialism: To paraphrase James Yaki Sayles, Colonialism is as a whole: the exploitation of natural resources and the prevention of the independent development of industry, the drawing of arbitrary national borders, and the implantation of alien political systems; the imposition of eurocentric education system, the distortion of the history of the colonized peoples.

Settler Colonialism: Distinguishes itself from other forms of colonialism because the fundamental goal of settler colonialism is the total extermination of the indigenous population or the colonized people in order to create space for settlers to create their own society and see themselves as “the new native” and essentially replace them. For example: the US is a settler colonial state and because the base logic was extermination, they didn’t have indigenous labor so settlers had to “source” labor via enslavement and force Africans to work to build their nation

SO what prompted this whole essay was a result of me scrolling on Instagram and seeing a post that made me scratch my head and say “that’s ableist.” The post came from an extremely popular Instagram account known as “the holistic psychologist” spearheaded by Dr. Nicole LePera. The post was the following:

The logic informing what Dr. LePera wrote places a lot of personal responsibility on the patient for having mental illness. How so? Dr. LePera speaks of a new paradigm in which she gives people the tools to become self healers which involves: becoming conscious, acknowledging childhood trauma, triggers, speaking “messages of limitless empowerment,” reparenting, self care, and more. The problem is: these words are juxtaposed next to paragraphs in which she’s also talking about mental illness in quotations saying “mental illnesses” aren’t in fact mental illnesses but rather messengers of life experience and trauma & so once we can heal ourselves of that, then we can move forward as “conscious warriors.”

Of course, it is imperative for us to be equipped with the tools to aid our coping mechanisms. Of course it is important that we become aware of our triggers, our trauma, our family’s trauma, and work on that. However, sometimes even doing all of that is not enough. Sometimes we need more and sometimes that is in the form of professional help like a psychotherapist or psychiatrist. Because the state of our mental health or having a mental illness isn’t a result of our “failings” to self heal.

In 2019, my mental health was on a downward spiral. I was feeling suicidal and decided I needed to see a therapist. I started working diligently with an incredible trauma informed therapist who could see me and all the ways I moved through the world, he respects my politics, and specializes in disability esp cancer. I felt seen as a whole person, he assigned incredible homework to do in between our visits: journaling, establishing a routine, self care, going to yoga, and more. I was becoming self aware of my triggers, I was unpacking hella trauma, and still I felt disappointed where I had periods of time where it felt like nothing was working. I soon realized that I needed to see a psychiatrist too. Two weeks later, I was diagnosed with depression, generalized anxiety disorder, PTSD/CPTSD, and PMDD. I exhaled relief because it made sense. I cried because I finally understood that this suffering wasn’t deserved or was the result of me not trying hard enough. Over the course of 6 months I worked with my psychiatrist consistently either once or a couple times a month. He collected as much personal history about me as possible (he basically has an autobiography of my life at this point) and we worked slowly to find dosages of each medication until we found a perfect fit. Through the balance of both medication and being intentional about my work in and outside of therapy, I’m in a better place than I have been in 12 years.

At first glance, The.Holistic.Psychologist’s posts appear insightful and helpful, especially for those who don’t have access to therapy ie many poor people, especially poor colonized people. I was recommended to her page from a friend and had even shared some of her posts a couple times. I mostly trusted the recommendation because of how many mutuals we had (poor mistake I learned last year). However, upon seeing this post yesterday, I decided to delve further into Dr. LePera’s page and found multiple posts filled with ableism that I had either missed before or were older. I also received messages of first hand experiences from her former followers about her lack of accountability as well as her seemingly harmless yet genuinely harmful rhetoric.

Here are a small number of examples (for more examples honestly just go to the IG page and scroll):

And this account isn’t isolated, this is a pattern across many pages online (and people in real life) proclaiming to be “holistic” healers, practitioners, or filled with “holistic knowledge,” because they read something online or they feel like they are when that’s simply not the case. Instead these people masquerade problematic rhetoric that is usually ableist as “self healing.” Hence: “holistic” ableism.

Other examples:

Hood Healer, an account with over 100,000 followers on Instagram, being homophobic and using ableist slurs: https://twitter.com/_iamtiredLord/status/1191815041575792640

Dr Sebi: “Dr. Sebi” Was Either A Complete Fool Or A Complete Fraud, But He Was No Healer — a complete breakdown on Dr. Sebi’s nonsensical misinformation being presented as cures.

As we can see in these examples (this is a very small number, there are plenty more out there), the problematic rhetoric expands beyond ableism but can also turn into ableism + classism, queerphobia, “I don’t see color,” and “positive vibes only,” toxic positivity, one cure for all nonsense. And the worst part is, many of these self proclaimed healers either have a sizable social media following, or heavy duty client lists, or are founders of centers, or are often selling a product or workshops to “deepen the understanding.” This is a lucrative business for either social capital or monetary profit because healing is something everyone desperately wants.

There’s nothing wrong with surviving under capitalism, but these people aren’t as informed as they present themselves to be, hardly offer sources, if they do it’s to a random off base sole study that they believe “proves” their point (studies need to be peer reviewed and conducted multiple times), they meld too many wildly different cultural & spiritual practices (which is dangerous and here’s a twitter thread I wrote with plenty of sources and further reading: https://twitter.com/itswalela/status/1125078605808070661), and constantly push misleading ideas rooted in problematic beliefs. The result is staggering because a wealth of misinformation is spread, many are made to feel they aren’t “doing enough” to “fix” their disability, and these people are constantly put on a pedestal.

This isn’t a tirade against holistic medicine. It’s a critique of fauxhemians who claim to possess “holistic” knowledge and in fact are causing harm or have the potential to cause great harm. Holistic medicine at its core is to treat the entire being. A lot of fauxhemians or fake “holistic” experts are proponents of these over simplified one type fits all blanket fixes to extremely complex diseases, disabilities, or disorders and that approach IS NOT a holistic approach. A holistic approach considers everything — so, reducing shit to one size fits all solutions (usually coupled with disregarding diagnoses) is in fact dangerous.

And believe me, I have empathy for our desire to self heal. I understand how people such as this become so popular online or in communities making them impenetrable from critique due to the cult of personality surrounding them. I believe for many colonized people in particular — the ongoing violence of capitalism and settler colonialism in that we’ve been stripped of our traditions, that we are exploited, displaced, murdered, and treated as disposable — results in a deep yearning to have a say in our destiny. Pages like The.Holistic.Psychologist or The Hood Healer or Dr Sebi or whomever else appeal to our desire to exercise some form of self determination; where we feel as though we are active participants in our healing because we aren’t relying on a system designed to kill us or maybe because we hope we are practicing something similar to our ancestors. Many people masquerading as “holistic” practitioners or “holistic” therapists will use buzzwords (often incorrectly) to gain our trust but ultimately they prey on our vulnerability and desperation — especially for those of us who are colonized disabled people. And I know that because I have experienced it first hand.

In 2017, I was diagnosed with advanced stage leukemia — a battle I am still fighting almost 3 years later. My cancer is complex, it is smart, it often stuns oncologists as it doesn’t “act how it should,” and it cannot even be broken down simply in a sentence. There are many factors at play with my cancer, my treatment, my genes, my longevity, etc. It’s overwhelming and to describe it accurately would require a ton of medical mumbo jumbo. I remember being 23 years old and being overwhelmed with all of this. I remember desperately wanting more for myself and some semblance of control over my life. Navigating a medical system that is designed to not give a fuck about us and that usually kills poor Black people, I felt like MediCal was in charge of my life and I wanted to do more to heal & secure my future.

Due to my many terrifying encounters with careless doctors, I was very open at the start of my cancer journey to try alternatives. I was introduced to an older woman who claimed to have been given divine knowledge. She was well known in my neighborhood and so at the time, there was no reason not to trust her. She proceeded to tell me about a regiment she has for everyone which was: eating a vegan diet and drinking an EXTREMELY diluted chlorophyll drink. She claimed doing both would cure my cancer. The catch: I couldn’t be on my oral chemotherapy and the drinks would cost me $60 a week. She never once asked for details on my cancer, the medications I was taking, my family history, other supplements I was on, there was nothing. But naive me was so desperate and too trusting, I gave in.

After about a month of this “regiment” in 2017, I went to an ER because I wasn’t feeling well. A blood test revealed my white blood cell count was 100% more than normal at 100,000. Moments like this are dangerous for someone with my advanced staging because once our counts start spiking, it’s extremely difficult to bring them down and the risk for infection is always high. Luckily, my count started coming down after going back on my oral chemo. However, this still didn’t change the fact that my life was close to being on the line because I listened to a VERY convincing ‘holistic’ practitioner aka a fraud who finessed $240 from me for some knock off chlorophyll drinks and told me to go vegan.

In 2018, I met my acupuncturist at a community holistic center. I told her the story I just told y’all. I also told her the story of how I tried Simply Wholesome’s famous olive oil cleanse that landed me in the hospital because the gallbladder is not designed to process copious amounts of oil. She started shaking her head profusely. She then warned me to not trust anyone who claims to be a “holistic” practitioner but is unwilling to accept my diagnosis as valid, who tells me I have to go off my chemo to receive their care, who is unwilling to work with my western doctors, and who does not inquire more about my disabilities & their complexities. And just like that, a light illuminated. Using those guidelines, I’ve been able to create an impeccable care team of holistic practitioners that balance out my western care.

What my acupuncturist said also made me spot fauxhemians much more quickly. The ones who I detected as frauds were: those who claimed to be students of Dr. Sebi without knowing Dr. Sebi himself was an entire fraud, those who wanted me to go off my chemo / put my cancer in “” / and wanted me to PURCHASE their product (I believe in compensating people, this is very different), New Agers, those who shoved veganism down my throat, those who made clear they didn’t understand nor were they willing to understand the complexity of my cancer, those who didn’t have mentors, or licensing, or tradition, those who insinuated my chemo would limit my spiritual capabilities, and let’s never forget: random people doling out unsolicited advice because they read swipe throughs on meme pages about gut health or alkalizing my diet.

In an age where social media can be one of the greatest places to build community and feel seen, it is also a place that often relies on lack of critical thinking (ie taking a meme that says drinking sea moss will help with mental health for face value). When we do not question the information we are being told, when we are not investigating for ourselves but instead putting other people on pedestals and allowing them to tell us shit cuz we have tons of mutuals or they have a ton of followers — well it becomes a damn mess. It results in a really agonizing cycle of misinformation being spread and especially when it comes to ‘holistic’ ableism and fauxhemians: it can border becoming really fuckin dangerous as it can play with peoples physical and mental well being.

If you enjoyed this piece, please consider donating as I continue battling cancer:

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There is something about having cancer, or any disability for that matter, that will make people — from strangers to acquaintances to friends to family — act completely out of pocket. I got diagnosed with advanced stage leukemia in April 2017. I remember the outpouring of love and support from strangers online, from my partner, my best friend, and some family members. Don’t get me wrong, it 1000% got me through my initial diagnosis. It wasn’t until I got out of the hospital that things changed or maybe I started noticing shit…who knows. I realized there were a few people who I had called close friends who hadn’t so much as sent me a text, a direct message, or called even though it was a well known fact on my social media and the communities I belonged to that I just got diagnosed with cancer. The amount of pain and devastation I’ve felt from “friends” or “family” or people I share communities not checking in on me has often left me to feel overwhelmed and infuriated to say the least.

On the one hand, I get it. Cancer (or disability — I’m just speaking on my personal experience so yeah) is this big scary elephant in the room. It makes all of us question our own mortality, grapple with death, shame, regret, remorse, and a myriad of other emotions that are hella uncomfortable. Sometimes, the thought of cancer can be so overwhelming people don’t even know where to begin, what to say, how to respond, or simply how to communicate. I have empathy for it, I really do; but at the same time it’s not my job, as a disabled person, to help the able bodied people in my life unpack their own phobias around disability, cancer, death, and ableism. It’s also not an excuse to do really shitty things as a friend, lover, family member, or person.

Since having cancer, I could write a book on the lack of support I’ve received. But I’m not going to do that, instead I’ll share the few poignant moments that have stuck with me to this day and have shaped why I move the way I do now:

-On the day of my diagnosis/hospitalization, I texted my mentor of almost 4 or 5 years the news. He proceeded to ignore my message & completely left me on read. It was never addressed in the months following nor did I ever receive an apology.

-There were a couple friends who literally disappeared when I first got diagnosed then reappeared when I was released from the hospital then disappeared again when they realized my cancer was going to be a long term thing. They continued to do this weird popping in and out: when it seemed like my cancer was “okay,” they’d come back into my life and we’d pick up where we left off; But as soon as my cancer became “a problem,” they disappeared.

-There were more friends and acquaintances who I would talk to about my cancer, or my upcoming appointments (while making sure not to dump or overshare in the process) and yet there were no words of support, no check-ins post appointments — it was just like talking to a brick wall or nothing at all. They were devoid of empathy or would give really surface responses. However, what was ironic was how they would be the ones who’d emotionally dump on me (without asking for consent) about really trivial issues. These were the ones who saw our friendship as valuable when my health didn’t get in the way of my availability to help them through their problems.

-There were others who offered support and day to day help then disappeared when the time came to follow through.

- There were others close to me who would see my posts on social media and didn’t think to check in. One instance that happened recently was I had a friend of almost a year who I was really close to. I was slightly annoyed with how she handled communicating something important (wasn’t a deal breaker for our friendship) and we weren’t really speaking — I was assuming we were taking space. Shortly after, maybe a week or two later, I posted about my cancer worsening on social media. My former friend sat through and watched every single story post like it was CNN but didn’t once text me, DM me, email me, nothing to check in. Radio silence. Mind you, I’ve had people where we didn’t fuck with each other at all reach out about my cancer. And it was really in that moment something in me shifted. I blocked her, moved on, and we haven’t spoken since. I did so because in that moment I decided that people cannot have close access to my life when they can’t even check in about my life threatening illness.

My grandaddy used to say, “you’ll be lucky if you can find enough good friends to fit on one hand in this life.” And he was damn right because trauma of any kind really shows how the people in your life value you. When we talk about friendship, we have to discuss reciprocity. We have to understand reciprocity as one of the fundamental pillars to make a friendship or a relationship of any kind work. Reciprocity comes in many forms: i.e. being compassionate, considerate, being able to equally sharing space in interactions, being mutually respectful of each other’s time, boundaries, and energy, etc. How reciprocity looks varies relationship to relationship based on what each person needs but also based on how circumstances change over time.

Care is a form of reciprocity in all relationships. For me, I’m not saying every single friend or my partner have to be at my side every second, come to all my appointments, and do the job of my therapist all in one — that’d be ridiculous. What I am saying is that all my friends and people I share space with do need to be willing and self motivated to check in about me, my life, my feelings, and my cancer, what I am saying is that all my friends and people I share space with cannot expect me to give all of my compassion, listening, and emotional support when they refuse to do the same for me, what I am saying is anyone who wants to be my friend needs to be willing to maintain balance in how much is given and taken.

Care is to let people know they matter to you and that you value their life. It’s not rooted in grandiose actions or presents or whatever tf. It’s a willingness to show up. It’s a willingness to say, “I’ve been thinking of you” “I’ve honestly never dealt with this but how can I support you?” “I have a lot on my plate but I still want to be there for you, how can we make it work?” “I don’t even know where to begin and I’m sorry I don’t have the words” “Do you mind telling me more about your disability so I can understand better? Or do you have a specific website you think accurately describes it so I can be more informed?” “What can I do to make things easier?”

There is nothing worse than to be navigating life as a disabled person and to already feel isolated from people who you thought you were in a mutually caring friendship/relationship with. We already feel isolated enough whether it’s because of strangers looking at us weird or being jackasses, or a capitalist society telling us we aren’t valuable, or lack of accessibility everywhere, or bosses/professors/teachers/etc who literally have no empathy for us, I mean the list can go on. The last thing we want is to feel even more isolated from our loved ones because they are acting weird and distant and like our disability is the boogie man. It makes us feel like we are a spectacle to be ogled at, to be observed in silence, many times I’ve equated the lack of support I’ve received with my cancer to feeling like people are just waiting in suspense on social media or in my life to see if I’ve died or not yet.

We all too often forget how our inaction can deeply affect those around us. For me, I spent so much time being caught up in the trope of how disabled people constantly have to be graceful inspiration porn, always nice and grateful even in shitty circumstances or when people are being shitty that it started to dictate my behavior and my expectations. It started to dictate how I thought complete lack of support was normal. That when people ignored my cancer it was okay. I was terrified of being seen as mean for setting any boundaries, for telling friends when they weren’t being good friends, for not wanting to be a source of “charity” to stroke someone’s ego, how much I repressed my need to be seen as dynamic. I convinced myself that I should just accept a lot of bullshit. And let me say first hand, it’s a terrible fucking thing when ableist myths become your own reality.

Cancer has always been an illuminating experience and continues to be 2.5 years into my battle. Experiencing lack of support first hand has been deeply lonely at times and it has resulted in moments where I resented my disability. I’ve complained about it in many therapy sessions and have said “well maybe if I didn’t have cancer, I’d have more friends.” But what I have taken away from this and therapy and cancer and what people being basically ain’t shit is that: there is something life changing in realizing my worthiness in the midst of trauma. There is something inherently meaningful in being able to value myself when I am made to feel disposable and yet I can still set boundaries that are firm about who can and can’t have access to me.

It has been nothing short of a blessing to finally see myself (without feeling ashamed for being confident) as a really good friend, as a really good person, as a beautifully compassionate human, as someone who will go above and beyond. It has taken me my whole life to value my empathy, how I ask intentional questions, how thoughtful I am, and to know that sharing those parts of me with someone is sacred. Just as them sharing parts of themselves with me is sacred.

It has taken my whole life to create boundaries to protect my relationship with myself as I maintain relationships with others. To understand that relationships of any kind should not be depleting, should not be rooted in take take take, should not be non reciprocal, should not brush off confrontation, and should not act as if parts of me — hello, my cancer, do not exist. And I am not a bitch for realizing that, for valuing myself enough to realize I deserve better, to vocalize that, and to remove people from my life who refuse to understand or do better.

If you are able bodied and are trying to figure out how to be better at supporting the disabled people in your life or disabled people in general, understand the reality of being disabled is something you all are rarely forced to think about because you don’t have to, because it doesn’t affect your day to day life…but you need to. You need to consider what would it look like if we acknowledged the disabilities of those around us? If we practiced community care? If we supported those who need it most in our communities? If we supported our disabled peers, family members, acquaintances to the best of our ability? What would it look like to unlearn ableism & the “taboo” of disability? What is overwhelming or scary about supporting disabled people? These questions are just some of many that need to be unpacked.

Here are some ideas of how to be supportive to the disabled people in your life:

-Ask “how can I best support you” so we have autonomy — sometimes what you think is care, is actually not helpful to us at all

-If you don’t know what to say or what to do, admit that when talking to us

-If we have fundraisers: share — more than once — ask if there’s anything extra you can do to make sure our goals are met

-Realize that you likely don’t fully understand what we are going through and that is okay, but don’t pretend and don’t dismiss our feelings or fears

-If you don’t know, ask — don’t make assumptions on what we need

-Do not give unsolicited advice

-Research our disability so you can keep up with what we are saying or ask us if we feel comfortable sharing

-Do not assume how we feel because we “look good” in a photo or in person, do not assume we receiving all the support we need so you shouldn’t try to offer some

-Send a text to check in — check in when you know we have appointments (if we’ve expressed we are okay with it), check in just for fun, check in because it’s a quick way to demonstrate care

This morning, I did what I usually do: the good ole checking between all my social media apps routine. I am calm, I am content, and I am interested to see what those I follow are doing. I open my Instagram & have a few DMs, I check them only to find the first message emblazoned across my screen reads: “Have you considered an alkaline diet? I don’t wish to be insensitive but I have known many to have cured cancer through trying this.” I immediately feel my heart rate skyrocket out of anger, I want to claw my eyeballs out, throw my phone across the room, or better yet — reach through the damn phone and slap this mothafucka. And before you hit me with, “well they were probably just trying to be nice, that’s a little bit of an extreme reaction” (which is also utter crap because intention vs. impact is a thing), let’s break this down:

An able bodied woman messages me, who thinks she is knowledgeable in some form naturopathy but according to her social media holds no certifications other than posting vegan food and “holistic” memes. This woman decides to hit my inbox — a disabled person who has been battling cancer for two years with a “suggestion” on what I can do to “cure” my cancer. However, she also knows she is being insensitive because everyone who knows they are on fuckshit always say, “I don’t mean to be on some bullshit, but here’s some bullshit.” Additionally, no where on my social media was I inquiring about natural remedies or diets or plans to aid or cure my cancer. In fact, everywhere on my social media I talk about how much I hate unsolicited advice and how I have a team of both Western doctors and holistic practitioners who I work with. So, this also tells me that ole girl felt so emboldened to tell me her “cure” that she hadn’t even taken the time to do her research. Instead, she projected her ignorant notion of the support she thought I needed onto me and instead of helping, she caused much more harm than good.

But here’s the thing about unsolicited advice, it is inherently meant to be unhelpful. It is meant to be invasive, assumptive, paternalistic, as well as a means to feed the “advice giver’s” ego, and more often than not it is rooted in ableism.

I’ve had advanced stage leukemia — specifically phase 3 chronic myeloid leukemia — for 2 years now. It is an illness that has ravaged my body, my mental health, my finances, and my life as a whole. A huge part of my time is dedicated to making the best and most well informed decisions for myself to ensure my livelihood — mostly because of medical racism but also because I am an active participant in my healing. However, it is no easy task — it’s a very high tightrope to walk: there are TONS of factors that go into creating treatment plans for me: what oral chemo clashes with my other medication and what of those things fit into my holistic regiments, how do all those things affect the mutation my cancer has developed that seems to befuddle anyone that comes into contact with it — the list is ongoing. You know that gif of the confused white lady & all the mathematical equations are buzzing around her head? Yeah, that’s usually what navigating treatment options feels like for me.

Outside of leukemia, I also have depression, generalized anxiety disorder, PTSD/C-PTSD, and pulmonary hypertension (a byproduct of chemo), 95% of which I take medication for. The past 24+ months, I have dedicated every fiber of my being to beating my cancer & adjusting to life with my other disabilities.

It has taken over a year to construct a balance between Western medicine and holistic care ie: acupuncture, traditional Chinese medicine, massage therapy, supplements, etc. To get to that point, of fucking course, I researched every single thing possible. I tried and failed many times, was taken advantage of by multiple “naturopaths” and “herbalists,” I looked into diets like: the alkaline diet, the grape-seed diet, CKLS cleanse, all fruit to rid illness diet, apricot seed diet, I was vegan, I even tried cleanses that sent me to the damn hospital. It took me a year to really understand that the internet is full of fraudulent and seemingly convincing “information” that is ultimately rooted in preying on people’s desperation and in my case: my desperation as a cancer patient to enter remission as quickly as possible. And ultimately, I learned that just because a meme is being heavily circulated on Instagram from an “all natural” page with a ton of followers — it still doesn’t mean the information the meme is spreading is automatically true.

So, when someone decides to waltz their way into my mentions or my inbox telling me how to navigate my cancer with bullshit like “put an amethyst to your head twice a day” “eat only cabbage” “take turmeric” “pour CBD oil on your entire life” “go completely vegan” “clean up your diet;” when they have not so much as had a consultation with me, are unaware of the staging & nature of my cancer, have not looked at my medical file, do not know what medications I’m on, or what holistic regiment I’m engaging in…yeah I get bout ready to clock a bitch.

Unsolicited advice is a faux form of enlightenment that’s extremely presumptuous. Its assumptive nature, especially from abled bodied people, immediately reduces our disabilities to choices - like being disabled is a lifestyle we signed up for. Unsolicited advice tells us: “well, you haven’t done enough research and that is why you are struggling,” “you haven’t gone vegan so that is why you still have you chronic illness,” or “you are taking those pills made by a capitalist medical industry so that’s why you are disabled.”

Disability isn’t a choice though. We don’t wake up and decide we want a disability or pick it from a catalogue and mail it to ourselves. We don’t sit in “pity parties” when we speak on our disabilities. We just are disabled and we navigate our lives to the best of our abilities considering our unique circumstances.

It also would be completely fucked up to not acknowledge the ways in which environmental racism, colonialism, and capitalist exploitation contributes significantly to destroying our well beings but sometimes even our very physical health and more often than not, our access to quality care- especially as colonized people. It’s not as simple as “going vegan,” especially when you’re a poor nigga living in a working class community and access to “real organic food” is on the other side of town where all the bourgeois white people live & the blueberries are 9 whole fucking dollars (it’s true, I saw it at Trader Joes on the west side today). It’s not as simple as “take all these supplements,” when the bill winds up being $200+ a month and you got loads of other bills to pay. It’s not as simple as “well you’re taking the white man’s medicine,” when you are doing the best you possibly can to find a balance and stay alive.

It is easy to tell someone what to do when you are not the one experiencing shit, it is easy to ignore all the other factors that come into play — because guess what able bodied people, ya’ll are not tasked with having to think about that shit.

Unsolicited advice is also rooted in complete and utter ignorance that is meant to only feed the advice giver’s ego. I remember someone got irate with me on Twitter last year when I rejected their advice to take CBD oil. Again, the person made an assumption that I hadn’t tried CBD oil but also made the assumption that because CBD oil aided so and so person in their life with their stomach cancer then obviously it would help with my leukemia. A quick search on medical studies about CML + my mutation type + CBD oil and one will generate results on how the best CBD oil can do for my specific condition is alleviate some of the side effects of chemo but by no means does it “aid” treatment. And a quick common sense check would make one realize the nature of a stomach cancer and leukemia — blood/bone marrow cancer are wildly different and thus are treated differently…yes, even in holistic realms. But none of that mattered to this Twitter user, they were more upset at how I had the audacity to reject their advice, with sound reasoning, while also setting a boundary in saying I was not interested nor did I appreciate unsolicited advice.

Here’s the kicker, for a majority of able bodied people, interacting with disabled people serves as currency for their Good Samaritan persona — “well I told this disabled person how to cure themselves so therefore I did a good thing and I am a good person.” Fuck our boundaries or what type of support we actually need as disabled people — able bodied people usually believe they’ve got that part figured out for us. But also, the very existence of disabled people makes able bodied people extremely uncomfortable. It goes back to what I said earlier about reducing our conditions to “choices,” unsolicited advice is a very weird form of rationalizing their very blatant ableism. If able bodied people can “figure out” how to “fix” us from a google search or a Dr. Sebi video then there’s no reason for us to “still” be disabled. But what if those suggestions are bullshit, mythical, fallacious, or not rooted in any ounce of fact (like they usually are), well then that means disabled people will still exist. It means some of our disabilities can’t be “magically” cured. It means some disabled people are simply disabled for the rest of our lives. And that means able bodied people will be forced to figure out how to “stomach” our existence and God forbid that actually happens (that was sarcasm).

If you genuinely wish to support disabled people, ASK us how we would like to be supported. ASK for our consent. Let us have the autonomy to decide how much or how little we want you involved with our disability and our lives. It is one of the most pretentious and unhelpful things to assume you automatically know the exact type of support every individual needs. So just don’t do it. You don’t have all the answers and frankly neither does a 5 second google search. Humble yourself to admit that. And humble yourself to check your own ableism in the process.

If you feel so moved and wish to support me, a Black non binary queer disabled person who wrote this feel free to donate to the following links below to help with my living expenses:

Venmo: Alonzo-Hunt-1

Paypal: ItsWalela@gmail.com

Cop a “Fuck Your Ableism, Fuck Medical Racism, Fuck Medical Apartheid” shirt or “Your Unsolicited Advice Does Not ‘Cure’ My Disability” Shirt here: https://www.bonfire.com/store/walelas-shop/

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.

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