Full Disclosure

I remember running into a tree at full speed playing tag when I was young. I lay on the grass, winded, staring up at the black and genuinely wondering how my friends had seen it in the dimming twilight. Years later, at outdoor music festivals, the sun would dip below the horizon and I’d suddenly find myself stepping on people’s blankets, tripping over legs, and walking straight into strangers. For a long time, it was just a joke—I was clumsy, bad in the dark, a bit spacey.

Then came the last four years. I developed posterior cataracts unusually early, sending me on a carousel of optometrists and ophthalmologists trying to figure out why my eyes were aging decades ahead of schedule. But the cataracts were just a symptom. The real thief had been operating in the background my entire life.

It turns out I have Retinitis Pigmentosa.

RP is a strange, ironic disorder. It steals your night vision first, making the dark a wall of shadow. Then, as if to mock you, it turns around and makes you hypersensitive to light—the very thing you need to see. But the true culprit of RP is the slow, relentless creep of tunnel vision. My peripheral field has been shrinking, degree by degree, year by year. The walls of my vision have been closing in, bringing me to my latest peripheral test result and an official diagnosis: legally blind.

Handing over my driver’s license hit hard. Losing that specific kind of independence is a real adjustment, forcing a complete recalibration of how I move through my gigs, plan my travel, and rely on the world around me.

Yet, in a strange way, if you have to deal with progressive vision loss, RP gives you a unique kind of grace. It doesn't drop a curtain overnight; it fades the lights so slowly that your mind, your habits, and your spirit have time to keep up.

Because the world shrinks gradually, you learn to adapt in real time. You learn to lean into your other senses, to trust your memory, to find deep focus in the center of the frame, and to appreciate the clarity of what remains right in front of you. RP doesn't erase your life—it just forces you to slow down and pay closer attention.