What about the “right-to-live?”

I remember when Jahi McMath died—for the second time. 

Senior year of high school, I came across an article about Jahi McMath, a 13-year-old Black girl who was declared brain dead after her tonsils were removed. It was Jahi’s first surgery, and she was scared. She didn’t want to go through with it, but her mom convinced her it would make her life easier (Jahi had sleep apnea, and removing her enlarged tonsils was intended to help). After speaking with the doctor, Jahi consented to the surgery, and she was fine for about an hour afterwards.

Jahi’s blood vessels were unusually close to the surface of her throat; the doctor had noted this in his chart for her, but the post-op staff was unaware. So when Jahi started coughing up blood, they didn’t see it as the alarm that it was, although Jahi’s family did. They repeatedly raised the alarms for her, but no one listened until her heart stopped.

Jahi was declared brain dead; her brain had stopped functioning due to the massive blood loss. In California, brain death is legal death. But Jahi’s family didn’t accept that. Her mother, Nailah, was convinced Jahi was still alive; Jahi responded to some stimuli and questions. Nailah asked Jahi if she wanted to be taken off life support, and Jahi said no through physical movements her mother taught her.

In the long legal battle that followed, Nailah and her family were forced to flee the state with Jahi under threat of legal action and jail time. Nailah’s insistence that Jahi was alive, and refusal to take her off life support, violated California’s medical ethics, so they went to New Jersey, where families can reject the notion of brain death on religious grounds—Nailah technically “kidnapped” Jahi to do this. There, Jahi had at-home around-the-clock medical support from nurses and doctors who were willing to lose their medical license or be shunned from the medical community; the doctors that treated Jahi were treated as quacks by the medical community. In the view of the community at large, you cannot treat a body that is already dead, and although Jahi’s body was not dead, her brain technically was. The California hospital where Jahi had been declared dead consistently disavowed the McMath family’s efforts and actively disparaged them for “desecrating a body.” But they were wrong.

With consistent care, and rogue researchers willing to look into her case, Jahi was able to exhibit signs of life, brainwave activity, and even underwent puberty. In 2017, a neurologist at UCLA independently confirmed that Jahi was no longer “brain dead.”

Jahi died—for the final time—in June of 2018, not even six months after the New Yorker article was published due to internal bleeding from abdominal complications. Despite overwhelming evidence, the hospital that issued Jahi’s death certificate refused to ever accept Jahi’s recovery and overturn her death certificate.

In 2020, I, much like Jahi, was preparing to go into surgery to get my tonsils removed for sleep apnea, just as she had been. Her name haunted the back of my mind in the days counting down to my surgery, but I, just like Jahi, spoke with my surgeon and asked him how many times he had done the surgery, what the risks were, how long he had been a surgeon. I had the insight that a 20-year-old had and a 13-year-old didn’t, but we were in the beginning of a pandemic, in the middle of the shutdown, and my mom wasn’t even allowed in the waiting room with me. Though I was nearly certain I would be fine (my surgeon routinely did much more complex and precise surgeries, like removing tumors that had grown into the blood vessels of the throat), I was alone when I frantically pulled the anesthesiologist aside and had to shamefully admit that I had been taking quinine pills until yesterday morning, a stupid superstition I had bought into as a way to stave off a Covid infection.

Quinine, for those unaware, is an herbal supplement that used to be used as a “cure all” back in the days of the Black Plague and the Spanish Flu. It didn’t work back then, but I’m a big believer in the placebo effect, and I needed to take something to put my mind at ease. One of the side effects of quinine—that I didn’t know until the morning before my surgery when I actually read the bottle—is that it can thin your blood. This makes you a higher risk for surgery; you’re more likely to bleed uncontrollably because the blood is much harder to coagulate. The bottle said to stop taking quinine two weeks before surgery. Feeling like I was going to cry, and possibly even about to die, I waited anxiously to be taken back and prayed that I would wake up afterwards.

Obviously, I did, or I wouldn’t be writing this right now. But I’m aware how lucky I was, and am. Jahi’s case is in direct opposition to Terry Schiavo’s: Terry Schiavo was a White woman declared brain dead who the hospital refused to stop treating, whereas Jahi was falsely declared brain dead and refused further treatment. Jahi’s family noticed this too; they knew if Jahi had been White, she would have likely received the attention she needed, and even if she had still been declared brain dead, her family’s choices would have been respected. Having come after both of them, and being light-skinned myself, I know my family would have had the respect and space they needed to make whatever decision for me they felt was right if my surgery had gone wrong.

Still, it haunts me; Jahi’s story is barely told outside of fringe medical pieces, but Terry Schiavo’s is well-known enough to be casually referenced in feminist writings. Who gets the right-to-live? Who is allowed to die? Why are our bodies’ needs and wishes ignored depending on the kind of body we inhabit? I hope Jahi is resting peacefully now, but I carry the anger and fear of what was allowed to happen to her.

“You’re Really Good At Taking Everyone’s Sh!t”

Whose Fault Is It?

Emotional labor is the act of “regulating or managing emotional expressions with others as part of one’s professional work role”. For the context of this blog post, I will also be referencing emotional work as well, which is the role people use in any social context.
RANT: Every post, YouTube video, and link that I looked at typically focused on the emphasis of how women have been the brute focus of emotional work and often, labor. WHAT ABOUT THE MEN?!
BLOG: Ideally, men have been the focus, but in our current generation, I am starting to wonder if men are becoming the scapegoat for blame. There are good and bad things to this, but I can only share my experiences. From growing up in a household as an adopted child to working in hospitality at some of the best hotels in the Houston area, to coming home and being expected to “clean up everyone else’s shit” (one of my ex’s fathers literally told me this and suggested I work for some type of plumbing company) to experiencing my own version of emotional labor is…exhausting. As a recommendation, if you’re dealing with being the emotional laborer of your family or workplace, I suggest counseling, good friends, hobbies, and money.
Now that I have your attention, the emphasis on emotional labor during this period of the class was for women. Honestly, I love that. Often, the strongest women in my life have carried the emotional labor of EVERYONE in the family. My Grandmother (capital G, because she truly is a G), and my Aunt (who raised me, God bless her soul) have not only raised multiple members of the family but have guided others and influenced people for generations to come. I can endlessly explain what they have done for everyone, including my impaired brother (this falls into the disability category of the past few weeks, but I decided to not go in-depth with these issues and instead focus on emotional labor…anyway) My Grandmother has done amazing things as a widowed woman, and when my grandfather was alive, what I recall of him, he was a remarkable man, veteran, and overall generally good person. In order for him to be that he needed to have an even stronger woman there to not only support him, but to motivate and guide him. We so often focus on a certain gender, but I think its vital to focus and include everyone because we cannot physically do it all on our own – even if social media suggests that we do.
When it comes to emotional labor for myself, as an older male, I grew up with the family vibe of “you want it? Do it yourself” This mindset has its own version of toxic masculinity and it worked for a time, but as I have grown older and started practicing gratitude, meditation, and fitness, I have learned that kindness is the key to growing. However, that is also the curse of being easily manipulated and being the scapegoat out of a lack of emotion – if you allow yourself to be. When working as a hotel supervisor, I found myself taking on the emotional verbal abuse of people that travelled so far and attempted to check in, but one minor inconvenience (Well…one time there was a major inconvenience, we sold out and by the time they got there…the people didn’t have a room… and they were diamond members which is equivalent to being a traveling version of Karen) set them over the top, and I had to apologize profusely, make up for their issues by giving them a free nights stay at another hotel, etc… all while keeping a smile on my face. So dumb, but it was vital in learning how to maneuver around people when they are angry and teaching myself how to stay calm in the face of disappointment. That’s an invaluable trait and lessons/memories that I am grateful for.
I don’t know, I am a believer in the idea that everything happens for a reason. Maybe I should allow myself to be the gatekeeper of my own “shit”, to be more selfish and selfless at the same time, and to lack the attempt to understand everything and everyone around me but I cant do that shrug. In essence, I think all of us must have some type of role in emotional labor, but please, don’t forget to take care of your mental, physical, and financial well-being. Your family, friends, and pets will thank you for it. (I will always choose to be kind and thank you to all of the people in my life, wouldn’t be me without YOU).

Excerpts from my investigation into disability on campus

The following is a series of excerpts for an article that I wrote for The Retriever that was published on Wednesday. (Below is from my original draft, some changes have been made in the final version for newspaper formatting.) If these tidbits interest you, you can find the whole article in print on campus now!

UMBC, I have a challenge for you.

Administration, Student Disability Services, and Facilities all tout the campus accessible routes map as the end-all, be-all solution for disabled students navigating campus. My challenge for you is this:

Make your way to the stadium lot, and then walk to the Fine Arts Building using only routes labeled as accessible. You are not allowed to use stairs, though you may use the short cuts available through buildings via elevators.  (The elevator short cuts are labeled on the map below.) For extra credit, start at the top of the hill near the Walker Apartments and go to the library.

I have marked the destinations for you below. The full map is available here: https://about.umbc.edu/files/2021/09/2021-UMBC-accessible-routes-map.pdf

While you are walking, focus in on your body. Ask yourself: What would this walk be like if my calves were screaming in pain? What if I struggled with balance and were prone to tripping on uneven surfaces and could fall?  What if I were using a walker right now? What about a non-motorized wheelchair?

What about crutches, or a lower-limb cast? When you arrive at your destination, take a note of the time. How long did it take you compared to using the stairs? Did you have to use a new route compared to your ordinary routine?

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It was disclosed to me by several students that after they met all of the (stringent and privilege-laden) requirements to receive an accommodation appointment with SDS, they are told they will be unable to get the accommodations they need. In addition, it has also been reported to me that these meetings are often negative in nature with the student seeking accommodations being met with derision and/or hostility for their accommodation requests. One student, who wishes to remain anonymous, reported being “refused note-taking assistance because they needed to ‘learn how to take notes themselves,’” as well as being refused alternative text formatting as that is up to the teacher and “they cannot do anything about it.” The student accurately pointed out that both of these accommodations are among the published list on the SDS website. Another anonymous student trying to receive accommodations was told, “I know migraines can hurt sometimes but that doesn’t mean you can miss class.”

Many of the interactions that were shared with me have a common thread that is heard all too often by the disabled community: “You’re just not trying hard enough” or “It can’t be that bad”. The implications that we are lazy, that we haven’t developed strategies to succeed in our classes, or that we are somehow exaggerating our health problems are not only outdated ways of thinking about disability but are also extremely harmful.  The reality of our lives is that it frequently is “that bad,” and that we wouldn’t be asking UMBC for help if we hadn’t already exhausted all of the resources available to us as individuals.  To hear these words from the people put in place to help us succeed is equivalent to lifting us up only to kick us back down. UMBC is not the only institution in Maryland struggling with this problem, as this article (https://www.jhunewsletter.com/article/2021/08/disability-isnt-taken-seriously- at-hopkins) written by a graduate student at Johns Hopkins details out. Laurel Maury was awarded accommodations by JHU but found that her professors refused to use them (even under threat of legal action) and some went as far as to bully her for having them. Maury’s struggle echoes many of the sentiments that have been expressed to me by current UMBC students.

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To my fellow disabled students: You are not alone, you have a voice, and your voice deserves to be heard.

The Unspoken Truth about Working Out

Growing up as an Asian American, I always had a fast metabolism and never weighed above 100 pounds. No matter how much I tried to eat, I could never gain the weight. If I lost any weight for any reason, it was hard to gain it back. Medical professionals would tell me that I needed to “eat a cheeseburger” because my weight was not considered ‘healthy.’ I was not allowed to donate blood because I did not reach the weight minimum. I was tired of being told how ‘weak and small’ I looked, envying anyone with more noticeable curves or physical strength. I refused to take pictures for months, archiving my entire feed on Instagram and hiding my body as much as I could. I was sick of the body I was in. So in 2019, I began to research ways I can transform the way I look as quickly as possible. 

Bedroom.

A view from my bed [ID: Hazy photograph of a window illuminated by vibrant red and purple lighting. In the center there is an electric candelabra sitting on the window sill, slightly obscured by sheer curtains.]

2011 was the year I began distancing. By which I mean, I began a life lived from my twin bed, fueled by goldfish crackers and electrolyte drinks, seldom able to access the outside world. It wasn’t mine to call home anymore.

I was drowning in conditions that these doctors hardly knew about. I had no choice but to become my own doctor, nurse, and historian. More than anything, I became my own community.

The outside world was stolen from me by sickness, uncertainty, and administrative violence – this world was never built for my survival. Such predicaments were met with constant calls to push through – go into the world anyways, risk it all for a “normal” life. They said adapting to it would make me better. It wrecked my body and my mind. Being bedridden was extraordinarily taxing and painful in a way that cannot be understood by those who have not been fully immersed in it in this way, yet. But I am inseparable from my bedroom life, I am made of soft pillows and the world I built among them. 

Queer Brokenness: Intersection with Mental Illness

Image Source: http://trauma.blog.yorku.ca/2015/12/south-asian-queer-community-lacks-visibility/  (Artist – Jinesh Patel)

(Content and Trigger Warning: Self Harm, Suicide, Substance Abuse, Emotional Abuse, Intimate Partner Violence, Bullying)

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I often find that mental illness and queerness aren’t addressed properly or constructively when talked about together. So often the public at large would have us believe that queerness is a result of mental illness or that mental illness is the result of queerness exclusively. With this in mind, the queer community will often push back on society’s behavior by talking about the two exclusively from each other, frequently ignoring all the ways mental illness intersect. That’s does not go to say that queerness is the result of mental illness or vice versa at all, but rather it shouldn’t be ignored that many people in the queer community go through both because of the way society has constructed and reacted towards queerness. For example, queerness has often been perceived as a deviant thing, it has historically been punished and worked against in a variety of ways.

People Are Kind of Gross, Right?

I was thinking about this as I cleaned some sweat off of the ear pads of my headphones. People are kind of super gross.

(A very distressed, very pink, child)

A for effort?

My brother and I were driving to school on Friday last week and on the radio they were talking about Obesity. Obesity is a huge problem in the United States of America. More than one-third (35.7 percent) of adults are considered to be obese. More than 1 in 20 (6.3 percent) have extreme obesity. Almost 3 in 4 men (74 percent) are considered to be overweight or obese. These are just numbers and there is more to it than that. But we cannot ignore the amount of health problems that comes with obesity.

So apparently right now some companies are trying things out to reduce the level of obesity in America. I heard them talk on the radio about how companies are considering taxing and also reducing the sugar quantity in all these soft drinks or beverages, in order to get people not to buy it as much and also drop a couple of pounds.

In my opinion, while these sound like interesting methods to cut down the obesity level in America, I just don’t think they would really be effective. Like how much tax are you really going to be allowed to put on something like soda to get people who really want it not to buy it? Maybe reducing the sugar quantity might help, but I feel as though a lot of people might be angered by this.

 

Can you see my oppression?

For a couple of weeks, I have noticed something that has been circling my life, that something is oppression.

Now and Then

At some point in my life I was 325lbs of pure fat. This was a result of me eating too much (having a sweet tooth and loving junk food) and not working out, I did not have any health conditions that caused me to be fat. Something as little as climbing up the stairs to get to my room, would get me breathing heavily and sweating. Looking myself in the mirror was always very difficult because my man-boobs and love-handles would irritate and make me feel uncomfortable. I remember all the insults I received from some of my family members, peers, and even strangers about my weight. Some of them were being hateful and bullies, but most of them were actually just trying to help/motivate me to lose weight. It didn’t matter if they had good or bad intentions, I was always sensitive about my weight.