I'm a Black Woman, and I Want to Protest—But I'm Chronically Ill
“Thanks a lot for ruining my holiday,” a woman’s voice said.
Her words were as overcast as the clouds I watched rush across the sky above me. That day in December 2014, I was one of 150 people splayed across the concrete in Philadelphia’s City Hall courtyard. I’d attended many protests in the past, but this was my first die-in—a demonstration where protestors simulate being dead in order to bring attention to an issue.
Admittedly, I was uncomfortable with the simulation. I worry sometimes that die-ins veer too close to making the violence and trauma experienced by Black people a spectacle. It was also cold. And between the subway rumbling underneath me and the shock and awe from tourists and shoppers, I was feeling...weird. In the moment, however, I reasoned that comfort—mine or theirs—was of no consequence. Michael Brown laid in the street for four and half hours. He didn’t get a chance to say, “Am I done? Is it over?” Eric Garner’s last words were, “I can’t breathe!” So I dare not say: “But I’m cold!”
A part of me thinks about that day and wishes I would have screamed louder. I wish I would have “resurrected” myself for five minutes to tell that woman that every holiday is ruined for Trayvon Martin’s mother. I wish these things because, unbeknownst to me at the time, that day would be the last I protested in the streets.
The only thing that has seemingly changed from then until now are the names in the hashtags. Eric Garner’s cries to breathe are echoed by George Floyd’s. Aiyana Stanley Jones’ sweet dreams-turned-deadly nightmare is mirrored in the late night wake up call of Breonna Taylor. COVID-19 be damned, the streets are full again with people whose sorrow and rage can no longer be choked back or pacified. And again, my inclination is to do what I’ve always done: Find the organization that’s screaming the loudest, and add my voice and body to the chorus. Unfortunately, this time around, I’ve been forced to make a different choice.
In the latter half of 2019, I spent nearly 75-85% of my time in bed due to an unnamed chronic illness that left me debilitated. I experienced extreme headaches to the point of being disoriented, severe balance issues, heart palpitations, fatigue, and muscle weakness. I went to doctor after doctor, wading through their disregard and biases.
“Maybe it’s your Fibromyalgia flaring up,” they said.
“No, this feels very different.”
“Maybe you should look into psychological care,” they said.
“Been in therapy for three years, try again.”
I took test after test and still, no answers. Finally, I learned that my immune system had crashed for a number of reasons including heavy metals toxicity and an inner-ear imbalance. As a result of that experience, I had to shift my entire way of life and living. I began eating mostly plant-based and using herbal and alternative medicines. In January 2020, I finally felt like I wasn’t dying and could return to my life. Then COVID-19 hit and I was back home—and, well, terrified. With my immune system in recovery, what would happen if I caught this virus that was disproportionately affecting those who looked like me?
While there has been no evidence yet of a link between autoimmune diseases and COVID-19, what I know from personal experience is that a flare up from any autoimmune disease, from Lupus to RA, can have a person laid up for weeks trying to recover. For me, one day in the streets can easily mean a couple of weeks in the sheets. If COVID didn’t get me, the fatigue and Fibromyalgia pain would certainly try.
Ironically, the biggest factor affecting a Black person’s immunity is the very thing we are fighting against. USC and UCLA scientists revealed last year that it’s been long known that “racism is linked to health problems [and]…racism appears to increase chronic inflammation among African Americans.” The influence of racism on the number of Black people living with chronic illness is significant. According to a 2018 UC Berkeley study, “...African American women who report experiencing high levels of racial discrimination may face greater risk of developing chronic diseases.”
There is certainly a cost we incur whenever we protest, and it’s a price that many are willing to pay. Whether we are marching, dying-in, blocking off streets, or storming our city buildings, there is always the risk that the confrontation will turn violent. Not to mention the mental and emotional toll that constant exposure to trauma reveals. But there’s something about the presence of a virus that disproportionately kills Black people that amps up the stakes. Evidence of this has recently showed up in preliminary reports that protestors in Houston have begun to fall ill from the virus.
My health battle last year shifted something in me. I now fundamentally know that my ability to fight injustice and call out white supremacy for longer than this particular moment is very much contingent on my being and staying well. This is something that I want every Black person out there fighting the good fight to also understand. We must continue to press these institutions—the criminal justice system and law enforcement, to start—to do right by us, and protesting is one very important part of that strategy. But we also must take care of ourselves. The biggest threat to racism and racists is a people who are whole and healed, despite everything that both have tried to steal from us.
I’ve anxiously watched as, in my hometown of Louisville, Kentucky, the uprisings on behalf of Breonna Taylor have reached a fever pitch. In every news clip and FB live, I’ve searched the faces of protesters for my family and friends. Some were there; others were not. Many, like me, were wrestling with the decision to march or not in light of health challenges.
Tiphanie Grant, a wife, mom, and entrepreneur in Louisville shared with me her decision to find other ways to protest in light of her battle with Fibromyalgia and Lupus. “If it wasn't for COVID-19, I would be marching and helping to bring supplies to protesters. I feel like I’m fighting two pandemics: racism, and a virus that can kill you.” But she also makes clear that she will still advocate in other ways. “I have chosen to give money to bail programs and programs that are providing supplies. Because I’m immune-compromised, I do feel helpless, but I hope this small part is helping the cause.”
Juanita Shackelford, a Certified Social Worker in Louisville, has suffered from thyroid issues for twenty years. During that time, she’s had four surgeries to remove her thyroid, gall bladder and two lumps from her right breast. She was also diagnosed with asthma. “COVID-19 is an extremely anxious time for me and my daughter, who also suffers from thyroid issues,” she says. “If my body calls out for rest, I must rest. But this has not prevented me from participating in protests at every level including planning, marching, and educating others.”
Writer Claudia Love Mair of Lexington, KY, has also had to reconcile—albeit somewhat unwillingly—that her health issues have made active protesting an impossibility. “With fibromyalgia and arthritis, and a torn meniscus that hasn't fully healed, I am unable to walk very far or stand for long. Despite these obstacles, I was ready to get out there on the front lines, but my daughter said absolutely not. We argued for days, until my 82-year-old mother chimed in and asked why I was being stupid. I reluctantly relented. Honestly, I hadn't thought about how my choices would affect the people who love me. I'm staying home, just as I stayed home during quarantine, for them.”
Living with chronic illness has always meant considering the impact that “feeling down” has on those you love. COVID-19 heightens that awareness. It isn’t just about being down, but more about the impact of being dead.
“I'm prepared to participate in other caravan protests in Lexington,” Claudia continues. “Other than that, I am using my primary social media account to share articles and insights. I show solidarity this way, and raise awareness. It isn't very heroic, but it's something. I want to be out there, but some days I feel like I'm on borrowed time as it is. My daughter asked me why I would speed up the process. She said she needs me, too.”
Those words from Claudia’s daughter unraveled me. As a Black woman, I have every reason to demand justice and equity for my people. And though sometimes I feel slightly guilty for not being in the streets, I choose to invest that emotional energy into amplifying the stories of the fight through my work, giving to funds that support protestors, and carrying the mantle of health, healing, and wellness for all our social justice warriors, in all the ways I can.
I execute my right to do all of these things, particularly as someone who has experienced what it means to lose a family member to racial violence. (In 2018, my elder cousin Vickie Lee Jones, along with another Black man, was murdered in a Kroger grocery store by a white man attempting to recreate his own Charleston massacre).
But when I stare into the eyes of my sweet baby girl, I see that the fight is much more nuanced than simply “will I march or not?” And then, I find peace in my decision to fight another way.
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