Donney Rose: On Being a Social Organizer with Invisible Illnesses and Practicing Social Distancing

Hi, I’m Donney. If you have been following articles here on The North Star over the past month, you have likely run across a few of my pieces. If you have taken the time to read any of those pieces you have probably learned a few things about me: I’m from Baton Rouge, I’m a poet/creative writing educator and I’m married. I’m sure I have not yet told you about my twin cats, Jalen and Derrick, but they are pretty lit.

Here are two other identifying facts about me: 1) I am a social organizer/advocate/activist and, 2) I suffer from relapse-remitting multiple sclerosis (MS) and Type II diabetes.

The latter of those factoids is always a difficult admission living in an ableist society, but it is an admission that has helped me build community with other invisible illness warriors and strangely given my conditions some degree of normalcy. I have accomplished a great deal in the six years since my MS diagnosis, and have continued on an upward trajectory since the nearly two years of my diabetes diagnosis. I am often fatigued, marginally depressed, irritable and in physical discomfort. I am also often hopeful, grateful, loved and loving to my community and highly ambitious. I am a weird duality of extrovert and introvert, and I guess I can blame the blend of my parents’ personalities for that. With the right crowd of socially conscious, arts loving, equality advocating people, I am a social maven. I can also be a very insular party of one. Now that you have a better introduction of me, let me tell you how all of this plays out in relation to isolation, medical paranoia and the very real consequences of defying my (half) outgoing nature.

The aforementioned lit ass twin cats, Jalen and Derrick Rose

The road to discovering my MS diagnosis was a jarring one not only for me but for my loved ones and immediate community. The tail end of 2013 was a time of great depression that I chalked up to a series of deaths in my family. I did not assume the wave of imbalance as a symptom of a larger problem, I just assumed I went through a lot that year and my mental anguish was the product of all of that.

The beginning of 2014 brought on various physical abnormalities. First I experienced severe mobility issues coupled with a loss of tenor in my speaking voice. My primary care physician thought I was experiencing hormone related issues and prescribed hormone replacement therapy medication. My mobility improved, but a new feeling of tingling and spasticity began consuming my body. For the first half of 2014, the people closest to me were deeply concerned about my mortality. As someone who had led the majority of my adult life as a performing artist, event organizer, educator and promoter, seeing myself sidelined by a mysterious ailment was cause for alarm. By November 2014, after a series of blood work tests, MRIs and a spinal tap, my neurologist named the autoimmune terror I had been experiencing throughout the year. An estimated one million Americans suffer from multiple sclerosis, a disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. I was now in that number. I distinctly remember my neurologist telling me that MS particularly wreaked havoc on the bodies of Black men and I thought to myself “so what else is new?”

By the time I received my diagnosis, Black America was thick into the throes of the #BlackLivesMatter movement. I spent the majority of 2014 reeling from the physical pain of an unknown illness and angered/saddened by a parade of state sanctioned killings that claimed the lives of Eric Garner, Mike Brown and Tamir Rice among others. My social media accounts became a rallying cry for me to raise awareness to my local community about these egregious injustices, while simultaneously keeping my family and close friends abreast of my health developments. It was during this time my community attached the label of activist to my list of titles, a label I did not feel entitled to as I was not physically on the frontlines fighting inequality.

I started taking medication for multiple sclerosis at the beginning of 2015 and felt an immediate resurgence of personhood. I got back to regularly performing poetry, wrote a chapbook and became more vocal (and physically active) with regards to social inequalities, specifically state sanctioned violence against Black people. By the time I helped chaperone a team of Baton Rouge youth poets at the international youth poetry slam festival, Brave New Voices (BNV), Sandra Bland had died due to the negligence of Waller County jailers. The rallying cry of #SayHerName feverishly rang out among the 500+ youth participating at BNV, and I along with my other mentor peers were in full-voiced advocacy mode alongside our young people.

Later in 2015, when it was determined that no charges would be brought up on officers involved with the mysterious death of Victor White III, who allegedly shot himself while being handcuffed in the back of a police car, the spoken word collective I belonged to organized a specialty open mic night called “Voices For Vic,” where his father, mother and sister attended as special guests. Because the Victor White case happened in the small town of New Iberia, Louisiana, located 70 miles west of Baton Rouge, our collective was able to get good “practice” for putting on shows that would not only entertain but also uplift, inspire and encourage advocacy. We did not know the powder keg of 2016 that was around the corner and I had no idea just how much my newly minted identity of artist-activist would be stretched to its limits at the same time my body was adjusting to its new normal.

For a number of reasons, I have gone on record as declaring 2016 the worst year of my adult life. Before the year would ultimately end with the abysmal election of Donald Trump as America’s commander-in-chief, I personally and communally endured a great deal of challenges and loss that produced a stressful cocktail of calamity for my already compromised health. The horror of the year began rather pedestrian, literally. During an annual neighborhood Mardi Gras parade, a float rolled by mocking the death of Eric Garner. I was in attendance during that parade, which later featured afloat that said “rape is just surprise sex”, and was wildly outraged at the blatant racism and sexism on display. I went home later that day and wrote a note on Facebook that was circulated hundreds of times and was followed up by some of my community peers, additionally writing about the parade’s mockery and eventually making national headlines.

Two months after the parade debacle, a young Black man was brutally beaten by police at Baton Rouge’s annual Earth Day parade. And all of this was merely a precursor to the July 5, 2016, the shooting death of Alton Sterling at the hands of Baton Rouge police officers Blane Salamoni and Howie Lake, an incident that would make international news and rip the bandage off the racially hostile environment of my hometown and the state’s capital city. Within 48 hours of Sterling’s death, I was asked to appear on Democracy Now as my communal voice had grown to a level of trusted representation. Later I would be called upon by BBC and The New York Times to voice perspective. A week after the Sterling shooter, I would once again be accompanying a group of youth poets to the Brave New Voices festival. One of our youth poets, Kaiya, would perform her signature poem “Blackout” and began her performance in dedication to Alton Sterling.

The day we returned to Baton Rouge from Washington, D.C., for Brave New Voices, three Baton Rouge officers were killed in retaliation to the Sterling shooting. Four days later, our poet Kaiya passed away from mysterious health complications. My grief went from local to hyper-local in an instance and this was all taking place a month before a great flood would obliterate Baton Rouge’s infrastructure and displace thousands. It should also be noted that throughout that year, Donald Trump would make four visits to the Baton Rouge area en route to winning the presidential election, his presence, a viscerally symbolic nod to the divide and chaos the city was experiencing. But in spite of all that going horribly wrong, my condition was making unprecedented improvement and by October of 2016, an MRI showed an unusual process of remyelination, or repair to myelin damaged by multiple sclerosis.

2016 article in The Advocate, Louisiana’s official journal, on my advocacy work. I also had a nice suit on in the picture.

The next two years (2017 and 2018) would mostly be years of great success for me. I was selected as a Forty Under 40 recipient by Baton Rouge’s primary business journal in 2017 and in 2018 was named one of five Kennedy Center Citizen Artist Fellows for its 2018-2019 cohort. After years of navigating the physical complexity of living with an autoimmune illness and asserting myself in fights for socioeconomic and racial justice in my hometown, the totality of my work was starting to see institutional recognition. But the fall of 2018 brought with it an intense freefall/downward spiral. In October 2018, I was diagnosed with Type II diabetes, lost my job with the nonprofit I was working for due to lack of funding and lost my cousin, who was more like a sister to me and taught me most of what I knew about being an artist, organizer and educator.

By the time 2019 rolled around, I was hustling to make ends meet and to restore a significant part of my spirit that had been broken. My body was engaged in battle with two diseases that were in direct opposition with one another with regards to damage they were causing. Professionally, I generated the highest earnings I ever made in life working as an independent artist/writer/organizer. Physically, I desperately hoped that my body would not take on any additional ailments, which has all led to this current moment in time where I am doing everything I can to stay the hell out of dodge from the coronavirus.

Kennedy Center Fellowship ended with Citizen Artist Fellows getting custom made bobbleheads.

According to diabetes.org people with diabetes are not more likely to get COVID-19 than the general population but are subject to severely worse outcomes. If their diabetes is managed improperly, they are generally at risk for a number of diabetes-related complications. And it’s me; I’m people, though my diet and disease management is solid. According to the National Multiple Sclerosis Society, people with MS who are treated with disease modifying therapies face an increased risk of infection upon contracting COVID-19. It’s also me, people with MS. So much of my livelihood is based on connecting with people, sharing art and ideas, and building community, but there is no livelihood without me remaining alive. I gotta remain inside for the unforeseeable future and it’s taking everything in me to not want to embrace the community that has sustained me, but I love them and myself too much to take those risks.