The story of Killian
I was eight years old when it started—the dizziness, the slurred speech, the way my legs would give out. I didn’t have the words for it back then. I just knew something was wrong. But no one believed me. Teachers said I was faking. Doctors dismissed me. And friends disappeared when I couldn’t keep up.
It took eleven years before I was diagnosed with Episodic Ataxia Type 2 (EA2), a rare genetic neurological disorder. It causes sudden episodes of weakness, imbalance, confusion, and fatigue. There’s no warning, no cure—just learning to live in the in-between.
I started treatment with Diamox at 19, but by then I’d already lost so much. I couldn’t participate in school. I’ve never been able to work or drive. Friendships and relationships are hard when you’re always explaining something people can’t see.
People say, “But you look fine.”
What they don’t see is the effort it takes just to stand, just to speak, just to exist in this body.
For years, I stayed silent. I didn’t want pity. I didn’t want to keep justifying myself.
So now I’m speaking out.