My experience being diagnosed with Lupus Nephritis at the top of 2024, along with the meaning and questions behind my newest painting "Rise."
It took three visits to my doctor and two visits to the ER for me to be diagnosed with Class 4 Lupus Nephritis. This diagnosis means that my immune system is attacking my vital organs and tissues, but chose to really attack my kidney. That more than 50% of my important blood vessels were damaged before I received proper treatment, and eventually, I may need dialysis or even a kidney transplant.
"Rise." Sketch. Procreate. I made this during my time in the hospital.
During this time, I was hospitalized twice, both times for 5 days. Both times, time stood still as I gazed outside my window wondering when this would start making sense. Sitting and wondering, why I became sick.
Wrestling with my maybes, I wondered if God stopped loving me. Or maybe he gave up on me. Or maybe I was born to suffer.
Maybe I deserved this.
Maybe I needed to revert back to my intense solitude.
Or maybe I was someone who would always be almost there, just for something to pull me back into that abyss…
When family visited I would feel so good again, all sentimental and warm-like because I felt their love. Especially when they’d make me laugh, hug me tight, or make me watch Tubi movies.
But when the clock struck 9, and the nurse made them leave, the loneliness would return, and I’d be back to staring out my window as tears would fall down my cheek.
I’d wonder if I was weak because I wasn’t a lupus warrior, and I had no desire to be one. I read other Black women’s stories and most would say things like they worked from their hospital beds. That their pace didn’t change. That they were mostly silent about the emotional toll lupus had on them.
I wondered if I was weak because I did none of those things. I let those who asked know that my life had changed, that I was different, that I was sick and I would always be that way. That I was in pain, that emotionally and physically I was not the same. I took a break from school, I said no to opportunities, and I decided to be still for a while as I got used to my new body.
I wondered why I was supposed to be strong at a time when I barely had the strength to stand on my feet.
Why is it that my non-Black doctors could so easily tell me that they were sorry for my condition, while so many relatives and friends just decided I would be fine?
Why did my not being okay feel like it threatened their comfort?
Sometimes I'd catch myself pretending, holding in my tears and telling the tale that I was fine because I didn't want to be a burden looking for sympathy.
Looking outside my window my grandmother and the people I read about would cross my mind, and I’d wonder if they downplayed their illnesses because they knew people just wouldn’t understand. Or maybe they didn’t want them to worry. Or maybe they were tethered to the idea of being "strong," of not being a "burden."
And then I’d wonder why we were silently taught to bear the entire weight of being ill so that the healthy people around us would feel okay.
So, in that bed, looking out my window, I decided there was nothing strong about suffering in silence and I’d weep for them.
I prayed that those people would know that vulnerability was strength enough so they wouldn’t live a life of carrying around all they had to go through as it made them sicker.
Looking outside my window I thought about why Blackness was so limited that we are rarely allowed to explore our humanity and all that it is. For the good, bad, and the ugly. We only ever wanted to talk about our perseverance and excellence.
Why did my being sensitive always feel like a rebellion against my skin? I thought about my art. I asked why we were so bound to the idea that strength had everything to do with suffering in solitude. Why did we not realize that being a golden trophy was still a shell? Was still an assumption that we lacked depth and complexity? Why did we keep ourselves bound just because we were shiny?
Why did I, a Black woman, have such a hard time allowing someone to hold me when I needed to be held? Why was I so ashamed of crying when they diagnosed me? Why did I let the world take away my delicate nature so that I could just harbor everyone else's pain while mine lay doormat and fester into what is now a lifelong disease? Why was I willing to continue doing this to myself? Attempting to carry everyone else's stuff along with mine.
So I asked myself, why couldn't I be a sensitive Black woman? Why couldn't I be a sensitive, sick Black woman? Why, even now, was I confined to confidence and strength when I had neither?
And after a while, I let myself cry to God, to my parents, to my brother, to my boyfriend, to my aunts. I’d let my tears flow into their shoulders, and they’d let me crumble.
And it felt so, so good to have the freedom to be weak.
And in my tears, my cries out to God, in my days where I’d just lay down, I began to wonder why I became sick again as I wrestled with my maybes.
Maybe it was so I could lay down, and look outside my window. Maybe it was for me to realize that I was gifted with feeling deeply. Maybe it was to remind me I was not in control. Maybe it was so I could take walks, and appreciate the blue sky. Maybe it was to give me time to imagine. To feel God. To appreciate the simple things around me. To allow myself to be held. To wake up and cry. To be a soft woman. To stop feeling so embarrassed about these things.
"Rise." 40x60 in. Oil Painting on Stretched Canvas. May, 2024.
Maybe… it was just so I could let myself be.
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