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Culture

The #DocumentingCOVID19 Project is gathering untold stories from people in diverse communities

The #DocumentingCOVID19 Project is gathering untold stories from people in diverse communities

In the early days of California's shutdown, I read diary entries from the 1918 Spanish Flu pandemic. The entries portrayed many things; fear, despair, anxieties…the same things I was seeing every day on my social media.

My Facebook was filled with commentary and experiences from Black people, women, LGBTQ+ folks, and other diverse groups. One friend had a fever of 102 and a vicious cough, another was sheltering-in-place with her children while working from home, and yet another friend had lost a job opportunity. Would history remember their experiences? Would anyone remember how they felt, what they feared the most, what they were hopeful about?

The Internet has given diverse communities outlets to express ourselves for the world. We make people laugh through TikTok, start engaging conversations on Twitter, and document our dog's antics on Facebook. However, as a historian, I look at all of this material and wonder: who is organizing all these narratives? In 100 years, we may have archived the social media of MJ Rodriguez, Cardi B, Billy Porter, Hillary Clinton, and Anthony Bourdain, but their lives are not representative of the majority. Most of us will not ever be a presidential nominee, win an Emmy, or be on the front of magazines. And while I am not against recording celebrities, I believe that we can learn the most about a historical event from those who are never given the spotlight.


Historical narratives are often framed around the experiences of straight white men. As a Black woman thinking about future history books, I felt anxious that stories like the ones I saw on my Facebook would never be told because they would not be considered important. I could not let my family and friends be forgotten by history. With that determination set in my bones, I began assembling an oral history project, The #DocumentingCOVID19 Project, aimed at recording my communities.

Every week, I interview people to assure they will not be forgotten by history. I am recording the stories of people living through the COVID-19 pandemic so future generations will know how diverse communities and women survived. Since April, with the help of many supportive friends, I have interviewed 23 people from all walks of life: CEOs, hairdressers, mothers, teachers, COVID-19 survivors, community center workers, and government employees. Within these groups is even more diversity: Black, Indigenous, LGBTQ+, Jewish, people with disabilities, etc. In each interview, I ask people about their experiences during this pandemic as it relates to their identities.

For example, when speaking with Black mothers, who often give "the talk" about the police, I ask how they navigate a new talk… about COVID. For teachers, I ask about their concerns over what they can cover through virtual learning and the preparedness of future students. For people living with disabilities, we talk about the experience of watching large companies suddenly instituting working from home for able-bodied people, something disability advocates have been demanding for years. The records created by my interviewees gives a nuanced look at the pandemic: not everyone is making sourdough starters and perfecting their brownie recipe. Many people from diverse communities are afraid, suffering, but also showing a steel resistance to a pandemic that puts them most at risk.

Recording the narratives of diverse communities is essential because the nuances they give disrupt historical myths. One of my favorite things to do is read through primary sources in archives. Recently, I came across former slave narratives collected in the 1930s by Professor John B. Cade of Southern University and A&M College. Professor Cade and his interviewers traveled around the Jim Crow South, collecting the memoirs of former slaves. The power of these slave narratives is that they debunk many of the myths we have created about slavery. When someone tells me about how "slaves were usually treated well", I will now always share the story of Florence Bailey, who testified that slaves on her plantation were "branded by cutting ashes into their skin." It is hard to stand by your belief that slavery was only "a bit bad," when the voices of survivors say the exact opposite.

As I look ahead to the years that will follow this pandemic, I can already see some of the myths that will be created: it was hysteria created by the media, it was a Democrat hoax, it was just a cold, etc. While historical myths are created in part to organized political following in the present, they also occur because people do not know their history. It is my hope that the oral histories collected during this pandemic by researchers across the world will assure diverse communities are not forgotten. That our stories are not forgotten. That in a way, the work being done now, by historians and researchers can serve as a Mythbusters time capsule for future generations.

COVID-19 takes more lives each day and we do not have a cure. But we do have voices. Voices that recall the devastation, fear, and also the hope. One of the last questions I ask my interviewees is what their feelings about the future are. It has surprised me, after almost an hour of describing the exhaustion, anxieties and frustrations that the most common answer is "I am hopeful."

When they write the history of this pandemic, I want the world to know that despite everything we faced, we held tightly to hope. And if anyone doubts this, all they need to do is listen to the voices we have saved, telling our stories, preserved so our great-grandchildren will know how we survived.

Nikki Brueggeman is a writer and poet based in Southern California where she focuses on the subjects of Blackness and history. She can be followed on Twitter @warriornikki.

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Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

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It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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