I was 37 the first time my body whispered that something wasn’t right. I was on the train, just another day in New York, when my left eye started twitching. At first, it seemed harmless, almost funny. I remember thinking, great, now everyone thinks I’m winking at them. But the twitch didn’t stop. It followed me everywhere, a small, mocking reminder that something inside me had shifted.
I ignored it. Why wouldn’t I? I worked out, ate clean, didn’t drink much—I was living what I thought was the definition of “healthy.” But then the headaches came. Not ordinary headaches, but the kind that slammed into me in the middle of the night, jolting me out of sleep with a heavy pounding in my skull. They were so bad I’d end up vomiting, curled up on the bathroom floor. My face started to swell, my ankles ballooned, and exhaustion wrapped itself around me like a blanket I couldn’t kick off. I was becoming unrecognizable—even to myself.
My girlfriend at the time noticed it too. “You’re getting kind of puffy,” she said gently. “And you’re always tired. Maybe you should see a doctor?” But I brushed it off. Like so many men I knew, I told myself it was just work, just stress, nothing serious. I didn’t want to believe my body was betraying me.
The truth hit me one day when I went to visit a friend. Another friend had just finished producing a mixtape and I wanted him to hear it. When he opened the door, he didn’t even listen to the music. He looked at me and said, “Bro, you look horrible.” He wasn’t being mean—he was scared. Within the hour, he rushed me to the hospital, and that decision saved my life.
At the hospital, the words came fast: dialysis, kidney failure, FSGS. The doctors told me that if I didn’t start treatment immediately, I’d be dead within two weeks. I remember staring at them, barely able to process. Focal segmental glomerulosclerosis. It sounded like another language. All I could really hear were the words “chronic kidney disease” and “terminal.”
Terminal. I must have looked that word up twenty times, hoping the definition would somehow change. It didn’t. The only thing that changed was me.
Dialysis became my new reality. Four hours at a time, needles the size of pencils, the machine pulling blood in and out, leaving me hollow and exhausted. At first, I fought against it emotionally, sinking into depression. I replayed memories of who I was before, as if clinging to those snapshots could bring that person back. But slowly, I realized that life doesn’t work that way. I couldn’t go back. I had to find a new way forward.
Living with FSGS has been like sharing my body with an unwanted tenant. Some days, it wins—drains me, humbles me, reminds me I’m not in control. But most days, I win. I’ve learned to carry it without letting it define me.
What surprised me most was how my pain connected me to others. In dialysis chairs, in waiting rooms, in conversations with people who didn’t have the words to explain what they were going through—I saw pieces of myself. I realized that many in Black and Brown communities were living with kidney disease, just like me, often without a voice, often dismissed or overlooked by the healthcare system. That truth lit something inside me.
So I began telling my story. First to friends, then to anyone who would listen. And eventually, I turned it into work—building spaces where others could tell theirs. That’s how The Jentosy Project was born. Because I know what silence feels like. I know what it’s like to have a disease speak for you, when you can’t find the language yourself.
Now, I see my story not just as survival, but as a bridge. FSGS didn’t end my life; it rerouted it. It forced me to create something larger than myself, a place where others don’t have to carry their illness alone.
And if there’s one thing I’ve learned, it’s this: we are more than our diagnosis. FSGS might live in my body, but it doesn’t own my spirit. My purpose is clear—I will keep telling this story until others find the courage to tell theirs.
Keyaira S.
Rachel M.
María L.
Stacey B.