Black Lives Matter (in the Hospital)

This post, and subsequent blog, is about many things that make up the rich and chaotic texture in my life and interests. As I sit down on an early Summer Friday morning to knock the cobwebs from my mind and practice a form of an expression that I’d placed on a shelf long ago, there is much swirling in my heart and mind. The world outside has been flipped upside down it would seem ever since the clock struck twelve on December 31st. I, along with practically the rest of humanity, have watched the old world fade away as we are thrust into what appears to be the most turbulent decade in all of human history.

And yet, as my fingers sloppily find their way across my keyboard, much is still the same. Despite a ferocious global pandemic which caused the collapse of seemingly all global functions and processes, Black people are still fighting a centuries’ old war for dignity. Much more than dignity, really, but for now all that my brain can muster is dignity. Just, dignity. Some things never change. And yet still, in the wake of another terrible tragedy at the hands of law enforcement, The People have risen up to fight back. Damn, that felt good to type. And it feels great to witness and be a part of.

I digress. This post is meant to be about how my world has changed but also stayed the same. I’m still obsessed with design and food and art. I’m still creating on the low, with a gang of projects in mind or in process or better yet, in reach. And I still have Sickle Cell. Even being home for two (or is it three now?) months couldn’t keep my illness at bay. It’s frustrating as hell to spend a days and weeks taking it easy only to be met with the same aches, pains, struggles and fears as before. It just makes you tired. More tired than before. More tired than you thought you could be. To be clear, I’m not just speaking about the physical effects of my illness here.

Sickle Cell is known, accurately or not, as a “Black” disease because it primarily affects those of Sub-Saharan African descent. If you’re following closely, you might anticipate where this is going. When you are suffering in life, the last thing you want to worry about fighting for is your dignity. When patients with Sickle Cell visit hospitals they are indisputably treated with suspicion, contempt, and even violence. We are accused, directly or passively, of drug seeking and even faking. Imagine that. Faking a genetic debilitating illness. In my own personal experience I have been lied to, ignored, mocked, insulted, and even gaslighted. All by medical professionals, whose supposed duty is to provide care.

I’m strong though. And I’m blessed. And I have a great support system in family and friends who too are strong and blessed. Many of my brothers and sisters across this nation and across the globe are not as fortunate. It’s no secret that the same discriminatory practices we see carried out in nearly every facet of life in the United States are inflicted upon us in medical facilities. In fact, one doesn’t have to look far into the dark, racist history of this country to find Black people being horribly and sadistically mistreated by physicians. Henrietta Lacks and the Tuskegee Experiments merely scratch the surface on what has been widely researched and documented.

I could never hope to capture all of my thoughts and feelings and experiences on the matter in a single blog post, and this isn’t the first time I’ve blogged about my experiences with Sickle Cell. But next Friday, June 19th is World Sickle Cell Day, designated by the U.N. in 2009. In the United States, Juneteenth has an even more significant meaning to many Black people in this country. And as Black people across the nation take part in unprecedented demonstrations and and activism in the streets as well as on social media, I can help but feel even more the auspicious nature of these seeming coincidences. I believe that in times of revolution, everyone has a role to play. At present time I believe that my role is to fight for the Black lives in Emergency Rooms all over who face these obstacles in the face of their already debilitating illness. My immediate goals are for legislation at local, State, and Federal levels for Emergency Room and Hospital protocols for Sickle Cell patients and more.