Send Me More Stories About Chronic Illness
The night before heading to the Black Lives Matter Protests in Long Beach, I took my usual 3 large Lialda pills and my horrifying mesalamine enema and prayed that my ulcerative colitis wouldn’t stop me from protesting.
But the next day as my friends and I joined the crowds with our signs, I felt it. The intrusive pang of a flare up piercing through my body like fire. I tried to calm my anxiety, but it’s hard enough to stay calm when your body is attacking itself even when you don’t feel like you’re fighting your life as a Black Woman.
My body wanted me to go home; my heart wanted me to stay. In that moment, my body was weakened: the mesalamine I take breaks down my immune system, while the type of flare-up I was feeling can be so debilitating it stops me in my tracks.
But my soul didn’t want to be stopped by my body. It wanted its cries of justice to be heard.
Isn’t it already hard enough to live in a disabled body without being persecuted for it being Black?
Standing there with the police and National Guard pointing rifles at me, I felt a great deal of pain. My gut ached, yes, but so did my heart, as we chanted, “Justice for George Floyd!” and “Justice for Breonna Taylor!”
We continued into the street, stopping traffic. I could feel flamethrowers surging into my colon, and I thought: Isn’t it already hard enough to live in a disabled body without being persecuted for it being Black?
Eric Garner had asthma and diabetes. Sandra Bland had epilepsy and depression. Freddie Gray had a developmental disorder. They were all once standing on this Earth like me. All of us, Black and disabled in America.
Cop and military swarming around us, I felt my UC induced chronic fatigue beginning to take its toll, but I would not stop fighting. UC is scary. But it’s not as scary as living in a world without racial justice, or the genocide that is killing my people. Ulcerative Colitis may be incurable, but the same is not true for racism.
As several cars drove by, honking in support, I felt happy, but also exhausted. I am sick of the lies that tell us that racism has reached a remission. I am sick of disability being a comorbidity for Black lives to be lost in the pandemic. Most of all, in the immortal words of chronically ill Civil Rights activist Fannie Lee Hamer, I am sick of being sick and tired.
I felt sharp pin-needle stabs as I stood to rise. For only an instant, I locked eyes with an agitated national guard member as he restlessly paced back and forth, rifle in hand. The hostility in his eyes torched my stomach, leading to a flare-up. He seemed so poised and ready to act. So ready to shoot, if we had just given him an excuse.
They were all once standing on this Earth like me. All of us, Black and disabled in America.
Under his gaze, I felt afraid, powerless. Then, I remembered something. Being Black, woman, queer, and disabled have always placed my life in a condition of limited control. There were times when I couldn’t control the anti-blackness toward me. Times I couldn’t push back the sexism and the bigotry. Times I couldn’t stand up to my immune disease.
But that’s why I was standing out there. And while they may have had different burdens on their health than UC, that’s why so many people were standing there with me too.
