It’s no secret that black people don’t get a fair shake when it comes to healthcare in America. More and more each day, stories are hitting our timelines where we’re being arrested as hospital patients, misdiagnosed with horrific results, or being gaslighted by the “trusted” physicians we count on to survive.
I learned a lot about these issues first hand when my kidneys failed way-back-when in 2012 thanks to a kidney disease known as FSGS. Laid up, clinging to hope like a life raft at Brooklyn Hospital, I was told that I needed an emergency surgery to be placed on dialysis in order to stay alive. If you’re wondering like many others just what dialysis is and does—it is a medical process primarily for those with kidney diseases by which uric acid and urea are removed from circulating blood (or using one’s peritoneum) by means of a dialyzer. When my kidneys stopped working, dialysis was necessary to remove waste, salt and extra water to prevent them from building up in my body.
Now, statistically, patients of color are 1.5 to nearly 4 times more likely than whites to require this option. In my case, it was the only one offered. Let me repeat that slowly: THE. ONLY. OPTION. OFFERED. Had it not been for me and my then-girlfriend pestering my RN (registered nurse) about other choices, I might’ve been part of 57.1 percent that experienced a lower death rate than whites (63.5 percent) only to later learn that the prescribed hemodialysis sessions are considered inadequate because, according to The National Cooperative Dialysis Study, “higher dialysis doses result in reduced morbidity.”
For me, the right choice was only peritoneal dialysis. Relatively new, the practice went into long term use around the 1960s, and I credit it with not only saving my life but making sure I had a pretty awesome one at that. I say awesome despite all the hurdles I went through because for those on hemodialysis, doing things such as traveling and maintaining a regular work-life balance is excruciatingly hard. On PD, I was able to keep my levels stable from the comfort of my home (albeit while being hooked onto a Baxter machine for nine hours every night), travel to places like the UK and Greece, and work a stable job without judgment or reservations from my peers (shout-out to Black Enterprise and Okayplayer for understanding).
Trust me, it wasn’t easy… and by no stretch of my imagination was it pretty. From having almost bi-weekly trips to the ER to all those prescription pills I had to take daily to finding space for my Baxter supplies to fit in a one-bedroom, one-bathroom apartment — that time in my life was heavily stressful on myself, my then-fiancée, and my extended family.
I had a moment of clarity that happened during an extended stay at Mount Sinai Hospital’s emergency room:
The place was filled to capacity with so many people that I and others were placed in the hallway, writhing in pain, waiting for a bay to open up just so we could get an IV placed in our arms. One guy lost his sh*t (literally) and by the time I finally made it to a safe place, an elderly black woman had shared that she was “in wait” for three days straight without so much as a physician looking her way. Despite the pain, she checked out and hauled herself to another hospital known for poor health services.
That’s what a lot of patients of color are faced with on a daily basis. As someone still dealing with FSGS and having survived End Stage Renal Failure, the stakes are too high to be dealing with a healthcare “professional” who believes your pain tolerance is superhuman or hold an implicit preference for white patients when you’re in their care. Then when you add in how it affects your loved ones and those you consider your peers, it becomes an added stress on your psyche. I remember when I had a solid three-month bout of ER visits, which forced me to be more open about my condition, and people who I long admired and respected would come to me and say, “I’m sorry.” Now, empathy is cool, damn near missed in today’s emotionally devoid climate, but it always felt like a slight to me. I’d make a joke that it was “your fault” that I’m in this predicament, but really I was giving game to anyone looking down on the “sick black guy who may die” by saying: “I’m still here and ready for the turn up, so don’t lessen me by making me feel like the other in the room.”
All those emotions and life-or-death scenarios came to a head when Mitch McConnell proposed ending Obamacare in 2017. My body had been ragged with issues: calcium deficiencies in my bones, my skin was actually ripping at the seams, and I was frequently in the hospital for attacks to my intestines. It was dire, to be honest, and I wrote (with the help of my now-wife) a piece that served as a call-to-action that I could no longer wait for the waiting list to gift me with a new lease on life (I had been on the NYC Organ Donors list that whole time). Fast forward to Jan. 31, 2018, and my long wait came to an end when fellow scribe (and blood brother) Anslem Rocque successfully donated his kidney to me. Besides crying tears of joy in front of his MVP wife, Starr, and friends — I made a solemn promise to myself and my Creator that I wasn’t going back to my old life. You might ask, “What does that mean exactly, Kevito?!” And I’m glad you asked. It means that I took all of my experiences and those from others and dedicated every day forward to challenge and change how patients and practitioners of color are treated by this American healthcare system. From Charles Kinsley, who was an unarmed black caregiver shot by police while treating a patient of color with autism, to Serena Williams, who, after surviving a pulmonary embolism and emergency C-section, addressed the all-too-common situation of doctors dismissing black-and-brown women’s pain.
The effort I’ve put in so far has led to developing a project that uses laughter as the best medicine to explore healthcare issues that affect the black-and-brown community. Too many stories are headlined with us falling victim to other people’s negligence. Too many families and friends are deprived of their loved ones due to a lack of information about healthcare problems that play a significant part in these disparities we face. I think of people who I grew up admiring — Roy Hargrove, Pam the Funkstress, Phife Dawg, Akron’s own James Ingram, close friends like Reggie “Combat Jack” Ossé — and lament that we either didn’t know or didn’t show ways to provide solutions and tips that led to better health awareness.
I say no more and never again.
I am overly dedicated to raising #BlackHealthAwareness and spotlight why #BlackHealthMatters through every possible platform that exists, while putting the finishing touches on my plan of action that I cannot wait for you all to experience.
Kevin L. Clark is a Brooklyn-based health and culture journalist, and recent kidney transplant recipient who is raising awareness about his Mighty Healthy crowdfunding project on Seed&Spark. He also hosts #NotAnother90sParty, an R&B-centric party that happens every first Thursday of the month at GoodLife Bar. Follow him at @KevitoClark or @TeamMightyHealthy on IG and Twitter and subscribe to his weekly #KevitoSays newsletter.