The Death of Chadwick Boseman

Warning: Graphic images ie blood, damaged skin , open wounds, hospital setting

Hearing about Chadwick Boseman's death has been a lot for the black community and for all who knew his impactful work both on and off-screen. His death was not only unanticipated by the whole world but the nature in which he passed let us know that he gave a lot more of himself than we could ever hope to deserve.

Chadwick has always been a philanthropist and a humble individual. From the onset of his career, he made it a point to emphasize the importance of black excellence and education. From 2002 to 2009 he taught at the Schomburg Center for Research in Black Culture, a center that developed the Junior Scholars program, focusing on youths 11–18, “This tuition-free Saturday program…during the academic year promotes historical literacy through college-style lectures and presentations, group discussions and activities, and project-based learning”(2020). Even after achieving fame, though he was in small episodic roles in shows such as Law and Order, Boseman still kept his students in his thoughts, discussing the program at length in interviews as well as posting videos in support later in his career.

As his presence in the film industry grew, so did Boseman’s philanthropic efforts. in 2018, he made it a point to visit Howard University, a historically black college located in Washington D.C. It was there that he engaged students, encouraging them to endure the hardships, to fight for their beliefs. It was there too, that he was mentored by none other than Denzel Washington. It was here that he chose to donate and all through 2019 Chadwick supported and helped donate to other historically black colleges across the country.

Chadwick Boseman at Howard University’s 2018, delivering a powerful commencement speech. For the full transcript of the speech please click here (2018).

-------

Towards his final moments, he continued to give selflessly, supporting Michelle Obama’s #WhenWeAllVote. This organization is a non-profit that works to increase voter participation across all races and ages. Their goal is to increase voter awareness, foster more concern about candidates, and working to get people invested in the impact their candidates could make.

Lastly, though he suffered his own cancer battle, he took the time to encourage others to fight their own battles. This is something I have noticed, about the roles he chose in acting, the philanthropic pursuits he chose to invest in and the uniquely humble way he carried himself. During his last year alive he spent his time visiting children living with cancer at St. Jude’s Research Center. I can’t imagine the impact that seeing Black Panther had on these children, how strong they must have felt inside afterward. Living with my own autoimmune disorder since I was twelve, I did so with no heroes that truly understood me. I didn’t have someone with my disease to look up to, to emulate. Boseman was that figure for many of these children. Not only that, in April 2020, he also took the time to donate nearly 5 million dollars worth of PPE equipment to hospitals that served predominantly black communities during the pandemic. This is the man that we didn’t know about. This was the man that he was when he wasn’t wearing impressive black spandex, still a king.

In 2016, Chadwick Boseman starred in the films Gods of Egypt, Captain America: Civil War and in 2018 took the lead in Black Panther. Since 2016, he had also starred in Message from the King, Marshall, 21 Bridges, and Spike Lee's Da 5 Bloods. He made it a point to embody stories of the black man that teaches positivity and resilience. Through his acting, we witnessed how a king should act, how a leader should regard his home and his people. We experienced a world where black lives mattered and were understood. That alone was something we saw in T'Challa. Boseman has been noted as saying that he wanted to take roles that stepped away from black tropes. He didn’t want to tell the slave story, he wanted to tell stories of black people excelling.

-------

Why couldn’t we have this hero and embrace his illness as well?

Living with lupus I’ve had to lie about the severity of my disease or pretend that I didn’t have lupus to be successful. I, along with millions of others in this country, understand precisely what it took for him to excel. Individuals with lupus experience a plethora of symptoms that emulate other diseases. It’s one of the reasons we can take and use such a variety of medications, why it can take us years to be properly diagnosed. Some of the medications I take, such as methotrexate, Boseman could very well have taken if he was going through chemotherapy. He could have been using prednisone, a steroid that helps you feel like Superman all while pumping your bones to the max for the cells it needs to make you feel that way. I understand daily nausea, how you can vomit your guts out and continue working, taking calls at your desk. I know the heart-ripping fear of coughing up blood and wondering where it came from. I imagine Boseman doing a scene while feeling his body rejecting every action, feeling every motion with an acute hint of nausea and pain but pushing through it. Action-heavy films such as the Jackie Robinson biopic, 42, the Marvel movies, Gods of Egypt had to have taken a large physical toll. I know the practice it takes to not let people see pain on your face. I imagine his family saw it though, as mine did. They saw the fatigue. They witnessed the strength it took to erase it and speak with fans. They knew what he meant to so many people.

In this country living with a disease is extremely difficult. Many disabled are forced to meet the terms and conditions of the abled in order to function or to not be ostracized by their peers or coworkers. We hide our pain to ease normal people's discomfort or to protect ourselves in that environment and not be regarded as weak. If Boseman had taken the time to treat his body in the way it needed to be treated, would Disney have allowed him the time? Would they have postponed his scenes? Let him take a year off to heal and recuperate? After his death, it was later disclosed that only a few non-family members were privy to knowledge of his illness, "including producing partner Logan Coles, longtime agent Michael Greene, trainer Addison Henderson and 42 director Brian Helgeland — with varying degrees of knowledge about the severity of the actor’s condition. No one involved with Black Panther was aware, says a source. It was Boseman’s wish to keep his cancer battle private (Siegel & Kit, 2020)." I wonder if he felt that he could be honest about his condition or he like so many of us, did everything he could to accommodate the people around him.

-------

During this pandemic, needs for the disabled have been met more than ever before. We have more access to work online and are finally able to embrace full online learning. Not only that things so many of us have craved such as going to Comic-con to meet people like Chadwick Boseman was finally possible, with virtual conventions, concerts and acts of spontaneous creativity being produced for fans all over the world to enjoy for free. Musicians, actors, chefs, dancers have made them accessible to people like us. Now, there is normalcy in hanging out online, playing games together, simply chatting with someone to see how they’re doing. Self-care is now encouraged, people care about one another’s wellbeing. Often, travel and being able to support ourselves financially to travel is a struggle for the disabled and for the first time we get to taste what it feels like for people to not care about our condition. What a lot of Americans do not understand is how restrictive being disabled can be. I don’t mean, having difficulty moving, finding an open bathroom or even having to search for the closest elevator in a vast parking lot. I mean the laws centered around the “protection” of the disabled, rights, which in reality exclude the disabled from having successful careers, finishing college or even getting married.

What Chadwick had, financial freedom, is rare for a disabled person. In the state of Virginia for example, the earnings cap for an individual on disability is roughly $1,200. This means that a citizen on disability is only allowed to earn $1,200 from another source of income other than SSDI (Social Security Disability Income), lest individuals risk losing their health insurance. It doesn’t matter if the money earned goes toward housing, travel, bills, or vehicles. What the government believes is that their monthly stipend (anywhere between 400–$1,800)is enough to sustain a home, groceries, gas, bills, and extra medical expenses. What the average middle-class citizen understands, what you probably reading this understand, is that surviving on such a small amount is impossible without aid in northern Virginia. Being disabled is inconvenient sure, but it is also expensive in this country.

Using myself as an example, I’ll tell you my amount spent on my medical expenses this month and how it’s affected my income. So, being immunocompromised, I’m currently unable to work at my temp job due to its lack of protection. Disability affords me roughly $860 per month, $50 of which is taken to cover my insurance premiums. Per month, I use eight different medications, a lot of which my insurance helps me pay for. I spend about 30 to $40 per month on these medications. I have CPTSD ( Complex Post-Traumatic Stress Disorder) which costs $180 to talk about per month with a therapist. This month is also special for me because my family is able to help me pay for my dental work. Medications have wreaked havoc on my mouth and two crowns, coupled with x-rays have already amounted to a little over $800 with insurance. While dealing with dentists, who will over time have to do about $4,000 worth of work hopefully this year, I also have regularly scheduled doctor appointments, each costing 50$ per visit plus travel expenses. Dealing with lupus affects my entire body, hair, drastic weight fluctuation, fatigue, decreased mobility, degenerative tissue damage, possible changes in vision, personality changes due to medication or the disease itself, appetite, bone density, white blood cell count, even brain swelling has been a thing in my past. The disease I have has transformed several times over the course of my life, forcing me to adjust both physically and financially in drastic ways. These five years past, I’ve been dealing with a change in my disease. Due to an allergic reaction to a medication, my skin was damaged so thoroughly that I lost the palms of my hands, the soles of my feet, and the majority of my surface skin.

The tissue still hasn't healed properly and because of that, I need custom footwear (an estimated 150 to $300) and regularly scheduled appointments with a podiatrist ($50) and dermatologist($50). I also see a rheumatologist to manage my overall lupus, which affects my joints, especially my hips and legs. For now, due to expenses, I’ve had to forgo physical therapy which would have been a steep $135 a week and settle for walking as much as I can and light exercises in the home. I have to see an optometrist every 6 months in case one of my medications alters my perception of color and also because I’m nearsighted. I still can’t afford glasses for my new prescription ($224), because the lenses I need, which have to block UV rays (all lupus warriors are sun-sensitive and it can cause symptoms such as dizziness, fatigue, fevers, headaches, and even joint pain), I can’t afford alongside my other expenses, not to mention each eye appointment is anywhere between 50 to $60.

My insurance insists that even with no working hours I’m still earning too much and have to meet a deductible of $2,700 before I can get full coverage. The fine line I dance of being able to afford my healthcare needs and my basic cost of living gives me anxiety. Every symptom I experience I have to catalog as being something I can deal with until I can afford to treat it properly or something I have to scrape what little I have to treat it immediately. This month, I wanted a second opinion on my skin condition, since I’ve had similar pain for the last five years. I had a biopsy and to take care of the bandages, cream and pay for this new doctor’s opinion I spent an unplanned $90.

This is the part where people usually suggest turning to family. However, I am the oldest child of five and three of my siblings are in college, which my parents are paying for. They’re allowing me to live with them, letting me chip in when I can with money. My fiance and I share the basement area and are unable to get married or leave my parent’s basement because between my fixed income and his job as assistant manager at Papa John’s we barely break even on current bills and can’t put away money to save.

-------

Let’s look at things from an abled person’s perspective, now. Using a mid-range priced city in Virginia, Fairfax, we can see exactly how much money a family needs to live comfortably. According to researchers at Patch.com they estimated that an average family consisting of two adults and two children in the City of Fairfax would have to earn a combined income of roughly $9,000 per month, about $110,000 a year to have a comfortable life. Breaking down these numbers here’s what we have:

“Housing: $1,188 per month

Food: $769 per month

Child Care: $1,719 per month

Transportation: $1,157 per month

Health Care: $949

Other Necessities: $1,072 per month

Taxes: $1,544 per month (Wood & Staff, 2018)”

To live in the DC metro area, about half an hour away, that same family would need to earn approximately $8,795 every month to have a comfortable yet modest living. What does that mean for a disabled citizen earning only $860 per month and their ability to earn higher income is controlled by the government?

Chadwick, fortunately, was able to manage his illness on his terms using the money he earned during his career. He was able to maintain a comfortable lifestyle, travel, get married, as well as support his family. What we should ask ourselves now is how expensive is it to treat colon cancer. Cancer treatment for the average citizen, colon cancer specifically, would either put a middle-income earner into debt or force them to spend a large portion of their savings. Simply put, beating cancer doesn’t come cheap. Using the compiled data of scientists and doctors at the National Institute of Health it was determined that there are approximately three financial levels that a person will be at, in terms of cost of care. With the least life-threatening, in situ and local stage cancer, the approximate cost is roughly $27,551 with Medicare insurance. From there, distant stage cancer patients would have to pay about $29,933, followed by regional cancer patients whose cost of yearly treatment is about 30,748 with the same Medicare insurance. This is the cost of just one individual. Considering that Chadwick also has an older brother, Kevin Boseman, that also contended with colon cancer, imagine the cost to fight being doubled. Thankfully, his brother has entered remission but there probably still exists levels of care to pay for (Acuna, 2020).

What average American could afford that cost?

“Given the same stage of diagnosis, patients with more comorbid [the simultaneous presence of two chronic diseases or conditions in a patient] conditions had higher costs. Having one, two, or three and more comorbid conditions increased costs by $2,762, $3,095, and $7,717, respectively, as compared to patients with no comorbidity. Overall treatment costs were higher among Medicare only patients than among dually eligible patients, but the difference was not statistically significant" (Luo, Bradly, Dahman, Gardiner, 2010).” What this tells us, is that getting sick, having a disease or simply being disabled is unaffordable for the average person in America.

Chadwick Boseman sacrificed himself in our old world. A world that didn't care about his disease because honestly, he is not the only one doing what he did. How many of us have lost people to cancer? Can you imagine asking your grandmother to continue working? Mine did. Sixteen-hour shifts working as a live-in nurse, with lung cancer killing her all the while, untreated for months because she didn't have the time to regard herself. Though we are disabled we still have to work equally hard or often harder to achieve the things in life we want, ie a career, a family, even maintaining friendships. People want us to commit to events, so do we. How we commit can mean popping pills beforehand, might mean long soaking in a tub and more pills afterward, days of sleeping, days of aching. Everything, every little action as a disabled person costs.

When I hear about Chadwick’s death, I’m at a birthday party. I don’t quite feel it. I’m struggling to see the sickness in the man I saw on screen. I’m crying because I feel especially guilty for not seeing his hurt. I know that I shouldn’t, and honestly it isn’t guilt. It’s empathy because at the end of the day it was his choice. As a writer and performer, I understand that sometimes the work is bigger than any one of us. Beethoven was deaf, Van Gogh, bipolar, Tubman had epilepsy, Pat Parker had breast cancer, Selena Gomez lupus, Venus Williams Sjögren’s syndrome, Bernie Mac succumbed to sarcoidosis and complications with pneumonia. People like them value hard work, specifically the work they do but in the real world, it is very difficult for a disabled person to get the treatment they need, to afford it, or take the time out of work to get better and come back to finish their goals.

Hinging benefits such as healthcare and privileges such as marriage on monetary wealth discourage the disabled and sick from seeking help or forces them to turn down their dreams. In some states being disabled means living in poverty, living in a constant state of pain because medication is unaffordable. This country created the perfect storm of restrictive and outdated laws to foster generations of disabled and sick, with price caps on how much the disabled can earn per month, control over doctors and medications that are capable of treating their illness, and forcing citizens to take cheaper, riskier options for treatment. The disabled contend with facilities and stores all over the world being barely accessible, places like movie theaters woefully out of touch for the deaf/hard-of-hearing community, campuses with too few elevators or ramps, bathrooms with one disabled stall and a sink that’s too high.

Any one person in this country could very well be a young unrealized Chadwick Boseman, be smart, capable and confident in their abilities. Any one person could suddenly go from perfect health to dying, from being self-sufficient to needing help getting dressed or eating. I was 12 years old, dancing and taking Tae Kwon Do when lupus entered my life. Not to mention, all of us get old, we all get hurt sometimes, we all have others whom we care about. When we lost Chadwick, we lost a king. We lost a one of a kind individual that did what he could to make the world better than when he left it. I don’t think we should continue living in the old world and that new laws, new standards of living should be made for people like Chadwick. The disabled, the diseased and the different should not have to hide who they are and suffer in silence. We have a right to be here, we have a right to live our lives as Chadwick did, loving what we do and having the freedom to do so. Knowing the man that he was, we can imagine the world he wanted, a world where we all have a chance at greatness. As he said to those hopeful graduates at Howard, “ Your very existence is wrapped up within the issues you might be right here to meet. No matter what you select for a professional path, keep in mind, the struggles alongside the best way are solely meant to form you in your objective. After I dared to problem the system that might relegate us to victims and stereotypes with no clear historic backgrounds, no hopes or abilities, once I questioned that methodology of portrayal, a unique path opened up for me, the trail to my future. When God has one thing for you, it would not matter who stands in opposition to it. God will transfer somebody that is holding you again away from the door and put somebody there who will open it for you if it is meant for you (2018).”

So, let us open the door he made, a door that doesn’t hold anyone back for being who they are, for being made how they are, and walk through together.

If you would like to make an impact on those suffering from colon cancer please click this here to research or donate to an organization focused on beating the disease.

References

Acuna, K. (2020, October 27). Chadwick Boseman's older brother reveals he has been in cancer remission for 2 years after his own private battle. Insider. Retrieved November 10, 2020, from https://www.insider.com/chadwick-boseman-brother-kevin-cancer-remission-2020-10

Chadwick Boseman Remembered by New Yorkers Who Worked With Him [Interview by 1043845021 798318544 R. Lee]. (2020, September 2). In Spectrum News NY1. Manhattan, NY.

Chadwick Boseman's Howard University 2018 Commencement Speech [Video file]. (2018). United States: Howard University. Retrieved November 10, 2020, from Chadwick Boseman's Howard University 2018 Commencement Speech

Garrison, C. (2020, August 29). 12 Colon Cancer Charities To Donate To In Chadwick Boseman’s Honor. Elite Daily. Retrieved November 10, 2020, from https://www.elitedaily.com/p/12-colon-cancer-charities-to-donate-to-in-chadwick-bosemans-honor-32640342

Luo, Z., Bradley, C. J., Dahman, B. A., & Gardiner, J. C. (2010). Colon cancer treatment costs for Medicare and dually eligible beneficiaries. Health care financing review, 31(1), 35–50.

Siegel, T., & Kit, B. (2020, September 2). Disney Grapples With How to Proceed on 'Black Panther' Without Chadwick Boseman. The Hollywood Reporter. Retrieved November 10, 2020, from https://www.hollywoodreporter.com/news/disney-grapples-with-how-to-proceed-on-black-panther-without-chadwick-boseman

St. Jude. (2020, September 3). [Photograph]. St. Jude Children's Research Hospital.

T. (Ed.). (2020). The Schomburg Center Junior Scholars Program. Retrieved November 10, 2020, from https://www.nypl.org/help/about-nypl/fellowships-institutes/junior-scholars-program

[Photograph found in Wikipedia]. (n.d.). Retrieved November 10, 2020, from https://marvelcinematicuniverse.fandom.com/wiki/Black_Panther

Wood, S. (2018, March 23). Here's How Much You Need To Earn To Live In Fairfax City (1043920462 798364951 P. Staff, Ed.). Patch News. Retrieved November 10, 2020, from https://patch.com/virginia/fairfaxcity/heres-how-much-you-need-earn-live-fairfax-city?fbclid=IwAR0GDIbeHGf-pSNU77aUn16QlxRxVRnNwIHZu-05fwE_Rx5ttbRa99s5brQ