Anti-Racism Educator Fights for Fair Treatment in Health Care—and Beyond
He could be teaching a course on the history of African American culture through food at a local college or conducting an anti-racism training at the nonprofit he founded. But Calvin Eaton also sometimes spends 15-18 hours a day in bed because of debilitating pain and fatigue.
In the fall of 2009, when Calvin was 23 years old, he suddenly started experiencing widespread pain, muscular fatigue, and extreme body fatigue. Initially treated for mono, then for a general viral infection, he was finally told to lose weight.
Frustrated with the mixed diagnoses, Calvin started researching his symptoms. This eventually led him to fibromyalgia, a chronic condition that affects 4 million Americans and is characterized by pervasive pain and exhaustion. He brought his findings to his primary care provider, who used it as a basis for his official diagnosis in late 2010, almost a year after his symptoms appeared.
The now 35-year-old Rochester, New York resident has since been diagnosed with two other conditions: chronic fatigue syndrome (CFS) and celiac disease. But that hasn’t stopped him from creating a lasting impact on his community; in fact, in some ways, his health challenges have inspired and shaped his professional path.
As Calvin once wrote on his blog, he experienced intense feelings of guilt, anger, and shame for not being able to do the things he wanted and to stay on top of, including social and career commitments. The constant push and pull of his body eventually became too much and led to a nine-month period of staying in bed from September 2012 to March 2013 after a workplace fall. “I had to reshape my outlook and perspective in order to climb out of a dark psychological and painful physical place,” he wrote.
Balancing Productivity and Self-Care
Calvin experiences constant pain, though the severity varies. He can’t describe what a typical day is like when he’s in pain, because there is no typical day. “Every day is different, and sometimes even within a day, the feelings and sensations change,” he says.
Weather is a major factor, as rain and high humidity results in increased symptoms. Sometimes the extreme fatigue is more debilitating than the pain, and there’s no treatment for that other than long periods of sleep. When Calvin is in a flare, his entire body feels weighed down. “Imagine that someone has drugged you against your will and no matter how hard you try, you simply cannot wake up,” he wrote in his blog. “These sleep spells can last a few days, several days, or several weeks. At its worst, getting out of bed can literally take hours upon hours.”
Calvin’s fibromyalgia and myalgic encephalomyelitis (ME)/CFS exhibit as separate conditions, yet they’re “co-occurring,” as he puts it. Right now, his ME/CFS is more pronounced and more debilitating. As a preventative measure, he practices the “activity pacing” technique, in which he tries to balance his energy and activity. This means avoiding high-intensity activities that tend to initiate a fatigue flare-up. “My body seems to ‘over-feel,’ so something like lifting a box on Monday can feel in my body like I moved an entire house on Tuesday,” he says. “The sensation is disproportionate to the trigger.”
Calvin has tried many treatments to help manage his pain, including salt water floatation therapy, diet changes, acupuncture, chiropractic care, prescription medication (including opioids), exercise and physical therapy, CBD, and UV light therapy. One thing he’s learned is that massage therapy does not help his body and, in fact, makes his pain worse. Calvin notes that many of these alternative treatments are expensive and can be cost-prohibitive long-term. If cost wasn’t a factor, he says he’d like to try hyperbaric oxygen therapy.
Taking care of his health while pursuing his passions as an educator and activist is no easy feat. In 2012, Calvin ended up in the emergency room for an anxiety and panic attack. At the time, he was a teacher, overworking himself. Over the years, he’s learned many self-pacing strategies and even worked with a fibromyalgia coach.
In the beginning, Calvin saw fibromyalgia as something he could beat or overcome. Eventually, he learned to accept it as part of him. This was a years-long process, one that he calls ongoing.
Thriving Despite Pain
His career as an entrepreneur actually began with his Gluten Free Chef Blog and an Instagram account
(@theglutenfreechefblog). It was a way for him to document his experiences learning how to eat gluten free, and the growing pains that resulted. It eventually became something he was able to make a small living from. It also was the catalyst to his career as a community educator and eventually led to his founding a thriving nonprofit, 540WMain, Inc.
Calvin describes 540WMain as “a 501c(3) virtual nonprofit organization and anti-racist education brand that promotes justice for all.” He started it in 2015 as part of his journey of building a career as a disabled entrepreneur. He says it happened organically. The organization added a physical location in 2016, though now it’s all virtual due to the pandemic. Some examples of the workshops and classes currently on offer are “Introduction to Implicit and Unconscious Bias,” “Codeswitching 101,” “Decluttering Your Life: Minimalism Basics,” and “Guided Listening & Self-Care Circle.”
In addition to classes, 540WMain offers speaking engagements, consultancy, and professional development, with an emphasis on teaching clients about the realities of racism and working to address it.
Calvin also serves as adjunct faculty member at St. John Fisher College. He is a frequent guest lecturer at several Rochester area universities, including Nazareth College and the University of Rochester.
Calvin’s schedule may be full, but he is careful to prioritize his health.
“I love that I was able to craft a career infrastructure that complements my experience as someone living with an invisible disability,” Calvin says.
Facing Health Disparities
One topic that Calvin is particularly passionate about as an anti-racism educator is health care disparities. If he was to explain health disparities to others, he’d offer the following: “The barriers— whether implicit or explicit—that prevent all people, but most importantly, folks from marginalized and underrepresented groups, from accessing and receiving quality health care.”
While Calvin has never had any explicit instance of bias or bigotry as a Black man, he has experienced microaggressions, or brief and subtle instances of discrimination. Like many people with pain, he’s felt overlooked, ignored, and dismissed. However, he says, “It is difficult to separate my race from my experience and feelings of being treated differently. I feel that there have been times when a practitioner has judged my ability to pay or socioeconomic status based on my race and stereotypes that equate Blackness to poverty.”
He wishes the public understood that health disparities are real and affect Black people in tangible and devastating ways. For example, multiple studies have found that Black people are less likely to receive pain medication in emergency room settings than white counterparts, even when adjusting for other factors.
Calvin says that if someone is newly diagnosed, the best way to handle health disparities is finding someone, like a loved one who can come with you to appointments and help advocate for you or even, more officially, serve as a health care proxy—someone with specific legal decision-making rights and access to your records.
Changed for the Better
While Calvin devotes much of his time and energy to advocating for others, he, too, needs support, like all people living with pain and disability. He finds much of his strength in his family and friends and in his faith as a Jehovah’s Witness.
The most consistently helpful resource for Calvin has been the U.S. Pain Foundation, which he’s relied on over the years as he deals with his health conditions. He is a long-time volunteer and sits on its Disparities Solutions Advisory Council. Beyond its programming, much of its value to him has been simply in connecting with other patients—and knowing that he is not alone in his struggles.
Calvin says chronic pain has changed the entire course of his life, and continues to do so. He can barely remember what life was like without chronic pain, but wouldn’t change anything.
“I have had such a full life despite chronic pain, and it is hard to know or wish that I never had this come into my life,” Calvin says. “If I erased the chronic pain experience, I would also lose all the people and experiences that have changed me for the better.”
— by Lisa A. Goldstein